Ryan's Roar

September 1st Day + 208

2009-09-01T19:38:00.000-07:00

Ryan,

Look how far you have come, day + 208 from transplant.
You seem to be doing great! It is hard for us to know with out the fish test. But on the other hand you look great and everyone who see you says the same thing.

I was putting Ally to bed tonight, and I told her she was your Angel. She said " YEP"
I think people look at me and think that I am over the top now, Ryan. Things that I use to let go, like a cough or a sore throat or a fever in the first days, now I am on it right away, making sure that know one who has been sick or is sick comes near you. Paranoid, maybe? But better safe than sorry. I would never be able to forgive myself if you were to get sick and something happened to you because I should have been smarter. I wish I could go back to being more care free but I think this is the new me. You get upset if I tell you, that you can not go somewhere because someone is sick, but this is our new life and I know once you are old enough to understand you will thank us for keeping you so safe.

You are so carefree and I worry constantly. Remission, a word that to me is like a ticking time bomb, you never know if it will go off or just remain the same . What a way to live, in fear, every minute, every day wondering what will happen next. I try so hard to stay positive but at the same time know the reality of what we have been giving to deal with . Five years is a long time and for the next five years, life will be different. And even after that it will never be the same .
Cancer has touched us in a way that is very painful. Daddy and I have spent many night in tears, wondering why. Of course with no answer and no reason that we can think of that this has happened to you and us as a family.
We will have to re think family trips, wondering what tomorrow holds.
Each day that I have with you and Ally is a blessing and I am so very thankful for them.
What I do know, is that I love each and every day we have and will continue to enjoy our family time, I will continue to fight for you and cheer you on through each bump and each milestone you accomplish.

You have spirit and you have fight, and Ally is a fighter so together I think you guys could pretty much accomplish anything...

Love you and I hope you are amazed and have a wonderful time at Walt Disney World Florida..
You deserve it all and I know you sisters are so looking forward to this time with you ...

Mommy...
XXXXXXX

July 25th Day + 169

2009-07-25T16:56:00.000-07:00

Ryan,

Mommy has had some emotional weeks, so I thought I would write to you again.
Although you are doing so well, I still have problems taking it all in. I think about it every day. Wondering, what will tomorrow bring. And hoping that it brings only good things our way from now on. Since your visit on July 8th, and all the news was still very positive, you have been full of life, full of energy and acting like a typical 4 year old boy.

You have had a blocked line, so we were in hospital trying to unblock it. Then 2 days later a hole in the line. I was a mess, I put you in the bath tub and saw blood running down your chest. I was scared, so back to the hospital we went. We were there for 4 hours and they sent us home with clamps above the hole so you did not bleed anymore.
We got a call from the nurse to tell us your lines would be taken out in a week. We panicked some more. The night before your surgery we got another call, stating you had been bumped and that it would be a day later. Mommy took you down and we waited all day with no food. I have to admit for a little boy who did not eat from midnight until 6 pm the next day. You made me proud. I could not eat in front of you, but by 2pm, all I wanted to do was eat, but I managed to keep us both busy with toys, books and the nurses were a great help, dressing you up like a DR.
I really do think that you are going to be the DR in the family. All you ask for is DR stuff, dress like one and tell us you are going to fix children when you are older. Go for it honey, I am behind you all the way, and if you change your mind at some point that is perfectly fine to. We are proud of you no matter what.

You have been granted your wish to Disney by the Children's wish foundation, and we are so fortunate to be going in just over 5 weeks. We leave on September 5th and come back on September 12th..What a week we are going to have. Mommy has already started planning and looking up everything that we can do. Florida here we come!!! We can not wait to spend so real family quality time together.

Daddy and I are signing up with the Children's wish foundation to walk with them this year and raise money for other children with life threatening disease's just like you. We want them to have any wish that they may want to come true. Ryan this charity is truly amazing! It gives families like us and others that are in our shoes the chance to do something great, after going through something so awful. We are grateful to the Children's wish foundation and all who donate to the cause.

I have delayed you going to school due to my own fears, but the way I see it is, it is only another 4 months from when school starts until January so really what will you miss in Jr. Kindergarten.

Mommy has also decided to go back to work to get back to our normal life. You have already asked me if I can go now as you are so looking forward to going back to daycare in September.
Mommy will be returning on September 14th as I have to find daycare for your sister Ally and make sure she settles in well.

Ryan, I love you so very much and one day when you are a little bit older you will understand all that you went through so much more. So many people had a part in your road and your recovery, but in the end, you had to do the fighting and you are truly an amazing little boy. We could not be any luckier. You are here with us and fighting like a champion. Keep fighting Ryan, don't ever give up.

Love Mommy.

July 8th, 2009 Day + 152

2009-07-08T16:27:00.000-07:00

Ryan,

Another great day at SKH. Dr. Gassas is thrilled with your progress. 5 months in remission. 5 months post transplant. You are a trooper.

He asked me if I was happy? All I could stay was I was thrilled to know that you are doing so well. He also re mined me of the severity of your disease. It is like a flip of a coin! 50% we will not see this again and 50% that it could come back at any time.

He said, Suzanne, when we get to a year in remission we sigh, when we get to two years we say phew. He said the longer you remain with no cells of your own the chances of them coming back weaken. This is what I pray for. That your sister has done her part and weakened your cells from returning. Let's hope and pray.

Dr. Gassas, has confirmed he has started the process to have your central line removed, and that you are now able to go places with out your mask, you may also travel to Montreal and he has given you the OK to travel to Disney World for your wish, through the Children's wish foundation.
Wow, Ryan we can go on a family trip together. This is something that we could all use and look forward to. I will be starting that process tomorrow.

We can stop your medication Septra and we will continue on Penicillin for a full year!

Really this is like a ticket to get back to our old life and knowing that we still have to make well judged decisions for you.

Mommy, will be looking at all options in the up coming months as to what is best for our family.
I have to decide about going back to work, daycare for you and Ally.
Dr. Gassas has said you can go to school, I said no, and he said Why? I told him I was not comfortable and will most likely wait until January. He made a good point about you getting back to a normal life and having something to do, something to enjoy, meet new friends and be like all the other kids your age.I am looking at the options, but still don't think that 4 months will make that much of a difference.

Your next appointment, believe it or not is not until September 8th. A full two months away.

Ryan, Hope is a wonderful word, a word that I have continued to see through out this journey with you. It is a word I hold on to, you need to hold onto it too.......

We love you and are glad you are doing so well...Keep it up sweetheart....

Love always,

Mommy.

June 15th -Day +128

2009-06-15T19:12:00.001-07:00

Ryan,

I saw this saying by Lance Armstrong and liked it alot, so I thought I would put it in so you could read and see this one day.

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.

We got more results today from last weeks fish test. You are still in remission. Yippppeeeee! Fighting like hell is how I take this result.

Funny, I feel wonderful and thrilled about the news, yet still sad in some ways. I can not help but watch and think of our future, what it holds, etc.
I know many people are probably thinking what am I saying here, but as your mother, I am thrilled about the news, but anxious about the next test and the one after that..It is always right there, staring me in the face.
Daddy told me last night, we have to deal with this for a very long time, and even you being in remission, do not mean that every couple of weeks we have to await these results. It is so hard and every day that we get closer to a result, I feel I get a little more freaked out and my days become harder and harder to deal with.
Ryan, I have had some bad days recently and I am hoping that I can get them under control!
I cry alot and watch you alot and take in every minute of every day with you.
We are trying to get back to a normal routine and Daddy and I have many things to figure out in the next couple of months.

Hopefully in a few months we can contract Children's wish foundation and let them know we are ready to go ahead with the trip to Disney. I know you will love it. Mommy just wants to make sure you are ready to go and that we do not do to much to soon.

I love you baby...

Mommy.

June 10th- Day + 123

2009-06-10T12:22:00.000-07:00

Ryan ,

We went to SKH today for a check up!
Dr. Gassas was on vacation so mommy was a little upset that it has been so long since we have actually spoken to a Dr. I had a lot of questions and I asked the nurse if I could ask her the questions and if she could not answer then to refer me to a Dr. They were OK with this.

She examed you and said that she can not feel your spleen....this is good news.
She said you looked great, so we must be doing something right.

Chris took your blood and sent it away for the CBC, Bio Chem, results that we get with in an hour. Everything looks great! Your fish test has been sent out and we should have an answer on Monday. This will tell us if you are still holding all of your sister's cells....Crossing fingers....

We are allowed to take you to Montreal for a weekend as they have a transplant center at St. Justine's Hospital and should we run into any problems we can take you there....this is good Ryan we can go away for a few days and get away from our house....

If all stays 200/200 for the next couple of tests you can get your central line removed hopefully and go to school in September as per the hospital...Mommy and Daddy have decided to keep you out of school until January as precaution. Ryan there are just to many risks involved. Your immune system will not be back to full strengh and we do not want to take any chances.

You also may be able to go on your wish with Children's Wish in September or October depending on results and if your line is out. I know you want to go to Disney so bad...
We will get you there, Ryan.

Mommy is trying to get back to a normal schedule and will work out the details in the next few months....before I make any changes I need to see that you stay in remission for more than just one blood test..Maybe that is silly of me, but I want to make my decision based on the best information possible...and if you need me for a longer period of time, this is where I will be ...but if you continue to do well, it may be best for you to get back to your normal life with your friends and school, activities, etc.

Love ya lots,

Mommy

June 1st -Day + 115

2009-06-02T11:39:00.000-07:00

Ryan,

So you Nana in Ireland called last night to tell us that your Uncle Phillip and Cousin David, went to the Gratto.....Many people have gone to this Grotto in Ireland and placed things about a person who needs to be healed. So they placed the dinosaur that you gave your Uncle Phillipo to remember you by when he was here and a scanned picture of you. Dave went back up to see it and from what I gathered from the conversation is that someone put candles to help heal there loved one and everything on the Grotto was burned. David said the only thing that remained was your picture....Daddy and I talked about what we thought this meant and we have chosen to believe that someone is watching over you and protecting you..

Ryan you are doing great and are now taking your medicine with no problems at all.
I think the fact that we are bribing you with freezes and Popsicles.

Your hair is starting to come in, and it is coming in very nice, not in patches....it feels like a new born babies head....so soft....
Your tummy still bothers you and your bowl movements are still more frequent than most people, this will take time...All the chemo that gave you mucocitis I think has affected your tummy in some way. Some people get Graft VS Host of the gut...I do not think you have this, but I keep telling myself that your tummy and bowl issues may be what is keeping you in remission.
My belief is that Ally is attacking you in some small way. This keeps me positive.

I still have my bad days, days when I just cry for no reason, days that are just worse than others.
I watch you sleep and play with your friends and see the joy you have in everything that you do .

Ryan, continue to let Ally fight inside you and continue to be the wonderful little boy that you are.

Mommy.

May 25th - Day 108 200/200

2009-05-25T10:03:00.000-07:00

Ryan,

Ally did it, she has conquered your troops. We got the call this morning! You have 200/200 doner cells (Ally's cells) You have 2 amazing sisters. Ally who has given you this gift and Kayla who has been there by your side through it all. She has supported you and visited you in the hospital and they both love you so much.

We are taking this news and running with it. Today, tomorrow and everyday that we have with knowing you have 200/200 cells. We are over the moon!

Ryan it has been a long road and unfortunately it is not over by any means. I am not being negative, but realistic. It has been a bumpy roller coater for the last 6 months and I am worried if I get to happy I will get let down again. I want to believe that this was just a bump in our life, a shift in our plan that has now been put to rest and we can continue with nothing but good news and a great outcome to an awful disease..

Ryan you have come so far and we are all so proud of you.

Sibling fight for siblings and all three of you have shown great strengh in dealing with this awful disease at such young age. Ryan you and Ally don't really understand what is going on, only that you are sick and Ally is making you better, but Kayla gets it. She understand how serious this is and what is at risk and she has been so brave and strong. You could not ask for two better sisters.

I also want to thank you and your sister's for giving Daddy and I the strengh to get through this every day for the past 6 months. Although I don't know what the future holds, the one thing I do know is we have a great family and a great support system, so whatever the future hold we will deal with as a family and knowing we have so much support means the world to us.

So ryan, I want to thank everyone who has supported us through this and continues to do so, your family in Montreal ( your gramma and Grandad) our family in Ireland ( Nana, your Aunts and Uncles and cousins and there families), your Auntie Nicole and Uncle Shayne.
All of our neighbours, our dear and close friends, you all know who you are.
messages, phone calls just to say hello and see how we are. Shoulders to cry on, (that we have done alot of.) Blood clinics in your honor, family running marathons in your honor, fundraising in your honor. The list goes on and I can only tell everyone that it has helped in any way that they are amazing people who deserve the very best.

We are going to celebrate this tonight! I am not really sure how as we are limited in what we can do, but we will celebrate that I know for sure.

Love you

Mommy

XXXXXXXXXX

May 20th - Day + 104

2009-05-20T16:27:00.001-07:00

Ryan ,

At the hospital last Wednesday your cells had increased from 5 to 8. I think we were all under the impression we would be heading for a second DLI on May 27th. Mommy was worried that the cells being 8 were based on a test that was done on May 4th and we were now coming up to May 15th so I called the hospital looking for the results that were done on the 13th of May.
When I called they said that they had not received them back, but not to worry. It was the long weekend so I knew we would have to wait until Tuesday to hear from them. I woke up and called Daddy at work and told him to call the hospital and talk to Jane. He did and he called me back with in a few minutes and when I answered he just said " 4"
My response was 4 what? He said he has 4 cells...I was so happy that your cells had gone down. I was positive that they would have gone up. So we had to go into hospital today for another test to see if in a week they have increased...So we wait. Jane said to call on Monday and she will get us the results.

Ryan, you have been a handful lately. I am not sure if you have turned four and are more aware and more verbal then before. You are giving Daddy and I a run for our money. You are not listening very well and bed time has become even harder than before.
I am thinking it is a stage. Your sister is in her big girl bed and is doing great. Actually she stays in her bed and you don't. Who would have figured that to be the case.

You and Ally are starting to play very well together and you love her so very much. The first thing she does in the morning now that she is mobile, is runs into your room, gets in your bed with you under the covers and screams RY RY. You are always watching out for her and making sure she does not get into trouble.
You are a really good big brother and I am sure Kayla thinks that you are a really good little brother to.

Hang in there Ryan we are hoping for some more good news next week.

Love ya

Mommy.

May 16th - Day +100

2009-05-16T16:14:00.000-07:00

Congratulations Ryan,

We were told on Jan 9th that once you were in transplant the first 100 days were critical.
Congratulation you have gotten past the first 100 days....HOORAY!!!!!!!!!

It has been a little harder than we thought after finding out that you did not take your sisters full bone marrow. We came out with 197 Ally VS 3 Ryan. It has been like a little roller coaster, your cells have been going up and down for the last 2 months.

We have had to turn to the DLI - using Ally white cells and infusing them into you.

Ryan we used one DLI just after Easter and your cells seemed to come down. We managed to get them down to 5.

Unfortunately, we were told on Wednesday that just passed that your cells have started to increase again. Not the news we were hoping for, your cells now stand at 8 cell . So they have done another fish test and we are awaiting the news.

I called yesterday to see if they had heard anything and the response was not yet, but not to worry. Easier said than done. My fear is that if we were at 8 cells on the 4th what is it now, we are 12 days past that point. I am hoping they went down, but have prepared myself after talking with Dr. Gassas on Wednesday that it is most likely we will have to use the 2nd out of 3rd DLI.
(Ally White cells)

This is scheduled for May 27th unless the cells have gone down ( we would not use) or have really increased than I think they will schedule you in sooner.

Dr. Gassas did say that you could live with some of your own cells for the rest of your life with out relapse, but the chance of relapse is much greater with your cells.

Mommy feels like she is on a roller coaster that never stops, we just go up and down and round and round. I am fearful of losing you one day and grateful that you are doing so well.
Ryan I wish we could see our future, as this was not the plan. But our plan has now taking a bit of a turn and we will see it through and continue our plan in life when we are done with this journey. Ryan sometimes life throws us these loops and we just have to find a way to cope and carry on.

Alot of people have told us that we are strong and they don't know how we do it. We are not sure how we do it either, we just know we have to for you. Daddy and I find ourselves, watching your every move, watching you breath when you sleep, watching you play with your sisters and loving them so much. We just take it all in. I find myself crying myself to sleep almost every night, taking little breaks in the day while you nap and crying a bit more, so you dont see me. So are we strong, maybe, but I think that you give us that strength, along with Kayla and Ally. There are days when we do not feel that we can do this anymore, we are tired, drained and exhausted, but our love for you, Kayla and Ally is so much stronger than all of this put together.

We are a family and we will get through this for you.......

Love always

Mommy.

May 10th- Day + 93 Ryan's 4th Birthday and Mothers Day

2009-05-10T14:18:00.000-07:00

Ryan,

We were introduced on May 10th 2005, at 12.26 am. Daddy and I came into your room while you slept, and cuddled up with you and told you how much we love you. Then we just had to wake you up to tell you Happy 4th Birthday!!!! You were so excited, you said I'm four.
You fell back asleep and woke at 6:30 am and ran into our room and said do you know what day it is. It's Mother's Day! Happy Mother's Day Mommy. My heart sank. I was waiting for it is my birthday let's open presents.

Your Uncle Jim, Auntie Brenda, Uncle Philip, Autie Ro Ro, and Nana flew in from Ireland to spend your special day with you. Your Gramma, and Grandad from Montreal came as well.
What a lucky little boy to have so many people make the longs trips that they have made to celebrate with you.

Unfortunately, this year we only had family due to isolation and the risk of germs. Next year it will be different, we will have all your friends and family and make it so big as you will be turning "Five" Wow, five how time flies. I remember it like it was yesterday when you were born.
You have turned out to be one amazing little boy. You are smart, funny, inquisitive, and stubborn. I think you get that from your mommy "Sorry" not the best quality. I guess we could look at it as you will not let you cancer get you down, so if that is you been stubborn, good for you sweetheart...Daddy and I were just saying you have never complained once out, the needles, the masks that you have to wear when we leave the house. You remind us about it all the time, you make sure that no one is sick around you, or you ask for a mask. We could not be prouder of you. You are fighting this disease with courage and strengh.

Uncle Jim and Auntie Brenda brought over a beautiful uniform for you. A replica of Uncle Jim uniform from the Irish police. They had it tailored made to your size and you were thrilled.
They also sent an email to the local Milton police department explaining it was your birthday and what you are going through and they asked if they could make a trip to the house to see you.
So you got to sit in a police car, press all the buttons to make the loud sirens and police noises. You thought it was so much fun...When you had, had enough you said the police man, thank you for coming, but I am going inside now because I am getting cold. To any of your readers of the blog, I can not post a picture, but the pictures are on face book. I must say, and I am biased but Ryan you make one cute police man even if you are holding a stuffed penguin..

We had a cake, you requested Spider-Man, so mommy, Auntie Brenda and Autie Ro Ro, worked hard to get it done. You thought it was great. I think we were all glad it was done and worked out.

You were so tired you were asleep on the couch by 5:30, I woke you about an hour later and you were so grumpy. I should have known better, but I did not want you awake all night.

Daddy and I are so grateful to daddy's family for coming over from Ireland and making a holiday out of your Birthday. Ryan we are so fortunate to have great family on both sides. They have all turned there lives upside down for us during this crazy and difficult time.

Happy Birthday Ryan! We all love you so very much.

May 4th -Day + 87

2009-05-04T19:25:00.000-07:00

Ryan,

You have confirmed it. You are a little monkey.
Friday morning you had an accident in your bed. Mommy had to clean you up and I cleaned your lines right before I put you in the tub. You cried your eyes out because of your accident and asked for the syringes that I used to do your lines. So I gave in and you played in the tub as you always do.

Only problem this time , is you decided to pretend you could do your lines yourself and inserted bath water into you blood stream. Mommy thought that if she just pulled back and took out the water and cleaned your lines again all would be fine. I was wrong, very wrong.
I told your nurse about it at 4pm , and she looked at me and said call the hospital. When I asked her why she said there are alot of bacterias in water, some that are very serious, especially if they hit your blood stream. So we called the hospital and they said if you spiked a fever to bring you in.

All seemed to be fine, until mommy went out for an hour. I got a call from you daddy saying that you had spiked a fever. I came straight home and took you to the hospital. I called on the way to let them know.

They were all amazed that you would even know how to do this. I guess I can take credit for that. I have a very intelligent little boy. You are smarter than you know.
The Dr. asked you to tell him what happened and you described it perfectly. You also mentioned that if your mommy could do it than so could you. I don't think so. You were made to promise that you would never do it again....

Your fever broke after 4 hours and you were on antibiotics for 3 days. We were released this morning and your Dr. was happy with your progress.

Dr. Gassas says you look great and that your blood counts are good. He also mentioned this morning that since the DLI you know only have 5 of your own cells. Yeah. Great news.

He said that Ally cells have destroyed 10 of your and she only has to destroy 5 more for us to have a perfect 200/200 (Ally cells only) if we can achieve this than your army will have surrendered to your sister.

We did another blood test today as the last one was 2 weeks ago, so this will tell us if she has conquered your troops of if we have some more work to do.

I hope and pray we have done it and we can deem you in remission. This is my wish for you.

If anyone were to see you now, they would all be amazed at the difference in you from January to now. You are full of energy, full of life. Maybe this is Ally coming out in you. She gives us a run for our money on a daily basis. If you have any of you sister in you, we are sure to win this battle.

I had a great time with you this weekend Ryan and as always am so proud of you and what you have accomplished.

Love your mom.

April 22nd- Day + 75

2009-04-22T10:22:00.000-07:00

Ryan,

You said the other day that you talked to God and he told you that he was going to make you better. Well you must be doing something right because your bone marrow is clear. Your JMML is not back from what we can see. You are 21/2 months post transplant and it is not back so far.

Most children with JMML relapse with in a few months, we are almost there and you have not. Ryan keep doing what you are doing! Maybe I should be saying Ally keep doing what you are doing! Then again, I could just say keep on working together as a team. You both can do it, you can win this battle. I have amazingly strong willed children, so if anyone can beat this the two of you can.

Ryan you give me the strength to keep holding on. Every time I look at your face, each time we talk , each time you make me laugh. Each kiss and hug I get, the way you are with your sisters and how much you love them and us. All of this makes me love you more and more each day. You really are an inspiration to us all.

Dr. Gassas basically said, if I have this correct is nothing in your bone marrow ( ie: looks like remission) your blood work also looks fine so that would classify remission. But because you still have 15/200 cells they can not be 100% sure that it is not lingering and looking to resurface again. Your monocytes are with in normal range so another good sign.

We wait now until Friday to see if your cells have decreased since your DLI last week.
We are hoping that this is the case. Dr Gassas at a conference next week in England so we only have to go back on May 6th. This is like a nice little vacation away from the hospital.

I can not wait, the weather will hopefully get nicer and we can go to Niagara for a picnic lunch as a family. We still have to stay relatively close to the hospital to be on the safe side.

Ryan today was a good day, better than many others. We had an idea your JMML was not back but until you hear it from the Dr's you are alway left wondering for sure. We know it can come back at any time but we will run with this for now and hope that your fish test that was done today shows less cells. We should have those results by Friday.

Keep up the great work Ryan and lets Ally's troops conquer.

Mommy.

April 20th - Day+ 73

2009-04-20T08:03:00.000-07:00

Ryan,

Look how far you have come. We are at day + 73 post transplant and you are doing great considering all you have been through.

Mommy walked the 5 km MS walk yesterday and found out that she is out of shape. I need walk more often. You gave me a sticker to wear on my hand and you said " Think about me, don't forget" I got home and the sticker was still on my hand and you were thrilled.

You had a great weekend with your sisters. You spent a lot of time at the park and we took a walk on Saturday night. You are sleeping great in your bed and still eating and drinking well.

Mommy had a rough week last week and relaxed yesterday, once the walk was done.
You and I feel asleep for a short time on the couch yesterday, we curled up under a blanket to keep warm and drifted off to sleep. Mommy enjoyed each minute that you were asleep in my arms. I watched you like I did when you were a baby.

Ryan, you have started to want to play with your friends again and are becoming more comfortable in your surroundings since we have been home. I am so pleased to see this.

Mommy, has realized through all of this what friendship really means. One day when you are all grown up you will have many friends, I am certain of this. and you will understand how important they are.

Just remember friends are not always there during just the good times, but they are also there during the difficult and not so good ones. Being there through the good times is easy, it is being there through the bad that is much more difficult. Daddy and I have come to know that we have a great family and we have great friends.

We have had amazing friends from before you were sick who have been beside us every step of the way , and we have met some really amazing friends since you got sick, who have become good friends that have also been right there taking this ride with us.

So again, mommy wants to thank everyone who has been there for our family during this time. We could not have done it with out all of you. Ryan, their support is everything. One day you will look back on all of this and see what this journey was all about. I will be starting your scrap book soon. Your shadow box in done and will be hung in your room today, to remind you of what you have accomplished so far on this journey.

Love you babe,

Mommy

April 16th- Day + 69

2009-04-16T08:44:00.000-07:00

Ryan,

WE ARE ALL HOME!

You went in yesterday for your bone marrow aspiration! You were funny, the Dr. said you are going to take a little nap and you said" I don't want to take a nap" and you were in a sleep, just like that. Daddy had to come into the room just to watch..I think he thinks you are funny.
You sister did it the day before and daddy took a video of her when she was on her happy medication.

Dr. Gassas explained it like this:

Ryan you have a little army of soliders that have not given up yet. So we have to increase Ally's troop to try to over power yours. So we sent in 40 million cells yesterday to do just that...
You would think that 40 million would be able to take on 14 ( which is proabably more like 5000) when you do the actual math. So we wait to see what this war will do. Who will win.
Sorry Ryan I have to take Ally's side on this one, as she needs to kick some real butt now.
Please let your 14 soliders surrender to her troops. This is what we all need, this is what I need and this is expecially what you need.

We have another set of troop frozen and ready to come out should we need and another set after that.

Ally was able to produce 3 troops instead of the 2 they were looking for. Go Ally.

Ryan, we are awaiting the results of your bone marrow aspiration, this will give us a guide line to how we move forward. If there are no signs of your JMML being back then we can move slow, like we did yesterday. If it is back, then we will have to send in some more of Ally's troops to destroy yours. I call them the reinforcements. Destroy seems like a harsh word to use, but as your mommy if your cells are destroyed, then you will live a much better life and will continue to do great things. And we can deal with whatever happens after that together.

Ryan if we can get through this we can get through anything!

You wished last night before you went to bed that your line and bandage was gone and you could do what ever you wanted and go where ever you wanted. So now take a rest, let Ally's body do its thing and then guess what you will be as good as new and you can get on it. Go where ever you want, and do whatever you want. And I will be your biggest fan, cheering you along the way.

Love you monkey,

Mommy

April 15th- Day+ 68

2009-04-15T03:35:00.000-07:00

Ryan,

You would have been so proud of your little sister. When we got to the hospital she had her blood work and IV done. She cried a little but she got through it. We waited until about 3pm and the OR called us down. We were what they call " on call " as it was booked last minute.

When we got down stairs they came and told us that they were running late and if we wanted this done that Ally would have to be sidated and not put under general.

This is when we lost it, Mommy broke down and Daddy was just angry. We were not told this and with our emmotions running high, Daddy laid into the nurse and the Dr. The wanted to give her 3 different drugs, one that causes short term memory loss, and another on top of that.
When it came down to it we allowed them to do it, otherwise they were sending up back up stairs and it would have been cancelled. Mommy asked that she went in with Ally to the OR to make sure that she would be ok. When they gave her the first drug, we could not help but laugh as she was so high and she was laughing so hard..Daddy took a video so he could show Gramma and Grandad. She got through the surgery just fine and was awake when she came out.

The line was in her leg and she was not allowed to sit or walk. Ryan this was the hardest part as she is so much younger than you and does not understand. She had a reaction to all the drugs about an hour post surgery and daddy could hardly hold her down. She became a very angry child and she then fell asleep. It started again about 6:30 and the nurse gave her Ativan to calm her down.

We got up yesterday and went down to the 6th floor where they did the stem stell harvest and then we have to wait to see if they got enough or she had to do it again.

At 5:15 Dr. Gassas came in and told us she had done her job and it was now up to you to except her cells to fight off yours. Dr. Gassas was hoping for 2 sets to do two DLI's and Ally provided enough for 3.

She is home and resting well. We have to monitor heg leg today to make sure there is no bleeding. You were so happy to see her last night. But were quick to ask me to put her to bed. I think you wanted time with me and I was ready for it to. I missed you so much.

We are heading back to the hospital this morning. Dr. Gassas wants to do a Bone Marrow Aspiration on you to see if your JMML is back. He says it sometime hides it self in the bone marrow and not the perifial blood. So that will be done at around 11 and they will knock you out.
Then you will get Ally's cells today arond 2pm.

So we will update the blog when we get home today to as how everything goes.

Love ya Ryan and missed you so much.

Mommy

April 12th- Day +65 Easter

2009-04-12T10:16:00.000-07:00

Ryan,

Happy Easter Sweetheart!

You were so excited this morning to see that the Easter Bunny had come. We had to keep reminding you that some of the eggs he left for Ally. You were very kind and helped her find so eggs and you even put a few back for her.

We are Day + 65 after transplant and other than some of your cells growing back, you are doing very well. You look great, are eating and drinking well. You sleep more than a almost 4 year old should but that is ok. You need it.

Since Ally has had to go to the hospital for the last two night, we have dropped you to your Auntie Nicole for some quality time with Ethan and Aidan. Auntie Nicole to of course. She loves her special time with you when mommy is not around.

Grandad and Gramma were suppose to be here on Friday but Grandad was not feeling well and did not want to take any chances of you or Ally catching anything. They are on there way now, so they can take care of you for a few day while I am at the hospital with Ally.

You are not happy that I will not be here, but I have told you that she needs me and that she is doing this for you. I know you are in good hands and you will have a wonderful time with Gramma and Grandad. Daddy will be with Ally and I at the hospital on Monday and maybe Tuesday, but will be home with you at night to put you to bed and read you a story.

Kayla should be here on Thursday! I am sure we will be home by Thursday night at the latest.

Your Nana, Uncle Jim, Auntie Brenda, Auntie Ro Ro and uncle Phillip have confirmed that they will be here for your birthday and we are going tp have a big snake party at your request. Yuck.

You saw Ally's arm last night and said " mommy that looks really" then you paused and said 'BAD" and you asked where the tube in her leg was.

Ally is doing great, but we have not got to the hard part yet. Mommy is not looking forward to tomorrow. Ryan it is hard enough having to watch you battle this and now to add Ally to the mix of having to have these procedures done. I just keep telling myself it will all work out in the end.
You watch the two of you will do this together. I count on it.

You have both been through so much that no child should have to go through and if I could do it for you both I would.

I love you both so much.

Mommy.

April 9th- Day + 62 Bad News Yet Again

2009-04-09T15:31:00.000-07:00

Ryan,

What is happening? Mommy is so sad! Today at 3:30 you and I were talking about the day you were born and then the phone rang. Guess who ? Dr. Gassas!

He called to say that your cells have increased to 14! Wow they doubled in a week. Not the news we wanted to hear.

Plans for Easter have since changed. Ally will be going into hospital tomorrow for her first shot of GCSF to increase her white cells. Second shot will be Saturday night and third shot Sunday.

Monday morning she goes in for the insertion of the tube that will harvest her white cells. She will be put under and the remainder of Monday will be a rest day.

Tuesday they will harvest her cells and another harvest on Wednesday. She should be home by Thursday at the latest.

Gramma and Grandad are coming back tomorrow due to the news. They will help Auntie Nicole take care of you while we are taking care of Ally for the next few days.

Mommy has asked Dr. Gassas if this will hurt Ally in any way. He said that she has to have an easy going weekend. No rough play as her spleen will be full of blood due to the inceased cells.

I have asked what happens after DLI, he said that he wants to get enough for 2 DLI's to take place. So one will be done ASAP and then if it does not work again in about 4 weeks. He says this is an oppertunity to reverse what is happening. He also said there are no guarantees.
Mommy has read up on this procedure and I am not sure what to think as most studies show it does not keep a patient in remission. If that is the case I am hoping that it will buy us enough time to get you to another transplant.

I also asked abuot should DLI not work! His response was lets get to that bridge when we have to. Then a bit of a pause and then he said if it works out timming wise, we may be able to do another transplant.

Mommy is devistated! All we want is for you to get through this and be OK.
I will put my positive spin on this one and say these are bumps in the road and the end result will be great. We still have not got the 3rd piece of good news. So we wait.

You have been asking alot about God lately! You questions was what is God's job? So we have told you that he is the man that takes care of us all. You have asked if we are going to Die? We have told you that we will all die when we are very old. You seem to be ok with these answers.

You were also watching Backyardigins this morning and you said " Mommy Tasha is quitting "
You said mommy we never quit. We never give up and we alway fight. You got it baby.

Mommy is having a hard time with this one. How do I keep it together for you! How do I not let you see what my fears are everyday! I know you see it when I cry. You still wipe my tears and I still tell you they are tears because I love you so much.

Love you baby.

Mommy.

April 8th - Day + 61 Longer Road than we thought

2009-04-08T12:00:00.000-07:00

Ryan,

It is wednesday and we set off for the hospital early. You were in great spirits.
We saw your friend Kathryn and her brother Jeff.

We started off by seeing Dr. Gassas and you invited him to your birthday. He was very honored.
But he will have to pass as he need to ensure that he is at the hospital to take care of all the other boy and girls.

But good news your Nana, Auntie Brenda, Uncle Jim, Auntie Ro Ro and Uncle Phillip will be coming over from Ireland to see you in May for you Birthday. You may even get a visit from your Uncle Aidan and Auntie Ann.

Dr. Gassas examed you today and he still can not feel your spleen so that is great news.
He has removed your overnight hydration another good thing as we are eating and drinking well.

Your routine blood work has come back and looks pretty good. The only down side is that your monocytes ( marker for your disease ) has increased a bit. This is not something we want. It has come out of the normal range from last week and we will monitor. We await the FISH test again.

Ryan, it really seems like this is a week by week process and it is alot of adjusting to see what happens next. It is not at all straight forward. Dr. Gassas, I think should have the results by the end of the week and will let us know.
If your cells increase, they will make the decission to do the DLI on Ally, if they remain the same or less then we will wait some more. Your white counts, platelets and red counts are all stable..

Mommy is trying to hold it all together, but with great difficulty. I actually just made two cups of tea, and I am the only one here. Cleary not thinking.

Keep fighting my sweet boy. You are doing great..
We are all beside you every step of the way .

Love Mommy.

April 5th Day + 57 Shears of Hope Cut-A-Thon

2009-04-05T11:09:00.000-07:00

Ryan,

Today mommy and Ally were invited to join Cindy, Shannon, Jody and the staff of Village Hair Studio in there efforts in raising money for Sick Kids Hospital. We set off early and Ally got her hair cut by Jody and put in her donation in the box for sick kids. Your sister Kayla was also there to support you, she gave her donation as well, but did not get her hair cut as she has dance competitions coming up soon and it needs to be long enough to tie up.

Ryan you should have seen it, the staff were dressed in your favorite color, yellow. You are so right, it is a bright and happy color. There were yellow flowers, and your pictures were also up.

Mommy really can not thank Village Hair Studio enough for doing this in your honor. I am sure that they are going to have a very successful day. It is amazing how many kind and generous people there are out there willing to help.

Ryan, once you are able, I will take you there so you can meet all the wonderful people at the salon and we will have Jody cut your hair. It is such a wonderful place, great atmosphere, friendly and personable staff and always with out a dought a great cut, color and style.

Mommy thanks them from the bottom of her heart for what they have done.

Heather, Kathryn's mom was also there with one of her friends. She is truly an amazing person and mommy has become very fond of her. She understands what we are going through as a family as their family is going through the same thing. Mommy thanks her so much for coming.

Your Auntie Nicole, Ethan and Aidan came aswell, Ethan said he was shaving his head again, so you were not along in this. He really misses you and wants you to get well, as do we all.
Auntie Tina and Stevie, Deannie, Cindy and Kayla, Tanya and Lia, Carol Ann and Mike, Crystal, James, Savannah, and James Jr. were also there . I am sure if we had stayed longer we would have seen more people but Ally really needed to get home for her nap.

Mommy wants to extend her thanks to everybody who went to the salon today to support Village Hair Studio's event.

Thanks to all

Mommy loves you Ryan and you are loved by so many wonderful people

Mommy

April 3rd - Day + 55 Some more news

2009-04-03T13:46:00.000-07:00

Hi Ryan,

I found the spell check on blogger....yeah, now there should be no more mistakes.

You are doing well with in yourself. Hot Chocolate is your new favorite drink, you can not get enough and you are eating honey raisin toast like it has gone out of style.
Mommy is sleeping better with a few interruptions during the night.

Kayla had to get a vaccination (MMR) so she can not see you for about tow weeks. The reason she can not see you is because the shot she was given was is a live virus.
With you having a suppressed immune system, Kayla's Dr. and her mommy did not think it was wise.
Kayla will see us in two weeks. Mommy called the hospital to see if Mommy and Daddy can still see Kayla and they said " YES" not to worry. Daddy will be taking her to dinner and a movie next week.

Kim from the hospital called today, I thought she was returning my call, but she had not even got my message.
I got a little worried, as to why the hospital would be calling us today since we are only scheduled to go back next week.
Kim said that they put a rush on your Fish test to see what Ally cells were doing.

The bad news, we still see your cells.( are goal is to eliminate all of them)
The good news is there are now (194) Ally and (6) of Ryan, not much of a difference. But still one less.

Ryan, I choose to look at this as your cells did not increase with in the week. I take this as good news. We will now have to wait until Wednesday to see what your monocytes are doing?

Ryan, I was not sure what to expect once we were out of transplant. I had hoped and prayed you would be in remission and we would just have to monitor. Unfortunately, that is not the case and we are playing the waiting game, with unknown result every week. I think this will be a longer road than we all had hoped.

Ryan, this is the hardest thing life has ever dealt me and I am sure I speak for your father as well when I say this. So we will remain hope full and see what next week holds. I find it so unfair that you have had to face such a serious disease at such a young age. You have been through in your short life, more than I have ever been through. You inspire me as you are doing this with such strength and courage.

I will continue to pray for you. Daddy and I are so fortunate to have you as our son.

Hugs and kisses to you Ryan...

Love your mom

April 1st -Day + 53 Good New and Bad News

2009-04-01T11:52:00.000-07:00

Ryan,

We set off for the hospital today, it was dull outside and a quiet ride in.
Not knowing what to expect, it was a quiet drive in to town.
Gramma and Grandad came with us so they could hear what Dr. Gassas had to say and
be a third party. Sometimes what one person hears is not the same as another.

In the last few days you have done a 180 on us and have started to drink quite a bit. We were somewhat worried about this as you were doing this when you first got sick. You have started eating a bit better as well.

When we got to the hospital all your friends were there. I got a big hug from your friend Kathryn and you played with her until the Dr. saw us.

Daddy, right away asked if the fish test (you vs Ally) was back. They said yes, but we will talk about that later. Daddy was quick to state that when they say that, it is not good news.
So she told us that your cells have grown. Ally has 193 cells and you have 7. This is the bad news.

I think from now on, I will have you daddy wait for these results as this test is not the only factor with your disease. There are many variables. If daddy had waited we would not have sat for another hour thinking the worst.

What came next was your results from today. Your monocytes have dropped to 0.71 from 1.59.
This is the cells we really need to watch now. This type of cells is a marker in your disease.
The higher it is the worse off we are. So this is excellent news. Your white cells also came down to 7.1 from 11.1 another good thing.

Dr. Gassass says that next weeks results are key, as today we took another fish test and you have been off of the Cyclosporine for one full week. He is hoping that we are seeing a bit of Graft VS. Luekemia. ( Ally's cells attacking the remainder of your cells.) He says that as you have been off of it for a week now, we hopefully will see Ally's cells rise and yours start to fall.

He has told us that it is a very complicated disease and we need to control it early on, and that is why we have adjusted the medications already.

Grandad asked the question, what about a second transplant and Dr. Gassas replied do you really want to know the answer.. Grandad said yes....Dr. Gassas said time line on this is six months....Grandad replied with "WHY".
Dr. Gassas said that is a good question! Because of Ryans organs. His body needs to recover from the effects of the chemo and if we were to do it now, the chance of you surviving a second transplant would not be good. But should you remain in good health for another 4 months it is an option.

So should your cells grow again next week, they will most likely schedule Ally for the DLI and harvest her white cells. If not we continue to monitor you.

We asked if you were in remission and he said by looking at your blood cells "YES" but looking at the your cells vs Ally's " NO" We can not be 100% sure that there is no cancer as you are still growing your own cells. But the markers that we see are not showing any signs of it being back.

Ryan, mommy is choosing to run with this good news and hope that Ally's cells are fighting your luekemia. So far today has not been that bad. It definately could have been worse.
We all love you!

Mommy

March 31st Day + 52

2009-03-31T04:06:00.001-07:00

Ryan,

Mommy has had a rough week. Since last wednesday I have had tears, and been very sad.
Just when I think we are getting back on track, Wednesday is here again. So I go from being upset about new we have received to what will be next.

Mommy went to the Dr. for herself this week to make sure that I can take care of you.
I have not been sleeping well, all I do is toss and turn and worry about you.
Dr. Walk has given me a mild sleeping pill and told me that if I can get a good night sleep, maybe the days will be a little bit more manageable. So I will try this route.

You got to meet Karen, Jeff, Ben and Natty this weekend. We had a brunch on Sunday and it was great.

Friday and Saturday you we not really yourself, but by Sunday you were eating well and drinking more and I saw alot more activity from you.

Mommy was telling her friend Heather (Kathryn's mom ) about what our news was at the hospital last week, and she offered some help. Heather said she could contact a Dr. she is in touch for Kathryn and see if there was any studies or other treatments for JMML outside of Canada. Ryan, within a day we had an email from a German Dr. who would be interested in hearing your story and giving us there opinion.

Mommy and Daddy have so many questions and Gramma and Grandad are coming down this week to the hospital to be a third set of ears to hear what Dr. Gassass says.

I am not convinced, that we are on track here. I am not convinced that we can not do another transplant to get your remainning cells out. All I keep hearing is a year...Why a year? Does it have something to do with Ally adn her age? I wish I knew.
Yet most studies and information on your disease show better results on a second transplant!

We have made a list of questions and hope to get the answers tomorrow.
I will also be sending my email to the Dr's in the United States and Germany with your case history for a second opinion. Ryan, we have to do this as we are your voice, we need to know that we are doing everything possible to get you better. It is not that we do not have faith in the Dr.s here( that is not it at all ) but there maybe someone else out there that can sheed a different perpective on your case, know a little more or can offer some other advise. I do beleive that there is no harm in this.

Ryan, I am not sure what tomorrow holds, but whatever it does, know that we are there fighting with you every step of the way. We will figure this out.

I can not wait until it is a bit warmer so you can play outside a little longer. We take short walks to the park, but you are to cold, so we don't stay long.

You are so excited that your Grandad and Gramma are coming to visit today. All you keep asking is can I go fishing with Grandad...Soon honey soon.

Ryan, Mommy has to apologize to everyone who has been reading the blog for the lack of updates this week.
I will post again tomorrow as to the news we hear at Sick Kids.

March 25th - Day + 47

2009-03-25T12:24:00.001-07:00

Ryan,

We did not have such a great day at Sick Kids today. Another day where the news was not what we wanted to hear. So we pray and hope some more.

Dr Gassass said that your white count is up from 6.1 to 11.1 since last week. The normal range is between 5.0 - 12.0. He also indicated that your monocytes are 1.59 (elevated) normal range for this is less than 0.57. The monocytes are also a marker for JMML. I think this means the higher they go the bigger chance the JMML will re-occur. Dr.Gassass thinks that you might have a bit of GVHD ( graft vs host disease) so hopefully that will work in our favour next week when we get the results of the fish test. ( your cells vs Ally's cell) we want them to be higher in Ally's favour than last weeks results. Should this fail and we see more of your cells, than they will probably do the DLI and give Ally and injection to increase her white cells and then harvest them and give them to you in doses. If they were to give it all to you at once, Ally's whites would attack you and cause more problems.
I asked if we could do another transplant and was told things happen in steps and that if you get to a year post transplant it could be an option.
If the DLI does not work than we are out of options Dr. Gassass said.
He told us not to loose hope. He is not convinced that the JMML is back at this point and that we have to try to remain positive.

Daddy and mommy are not sure what to do. We have so many feeling running though us right now. We love you so much and the thought of you not being here is unimaginable to us.
I cried all the way home from the hospital. I cried so much I gave myself a headache.
The thoughts that went in and out of my head all the way home was enough to drive anyone crazy. I am surprised that I am not already there.

The first thing you said to me when we left the hospital was "mommy, can you take me to see everything I have never seen before." So I asksed you what that was and you did not have an answer. Do you know something we don't? I have asked myself this question time and time again. I have not really come up with an answer, I think I still am just reading into what you say.

Ryan, I will pray every night that we get better news next week.
We still have not got our second and third piece of good news.

Our first was that Ally was a match after a trying month and a half from the date of your diagnosis. And all good things happen in three's.

So I will hang on to this and hope for the best my sweet boy.

I love you the whole world and back again, and when you are able to read you will say "hey mom that is what we say everynight before bed.

Mommy

March 23rd Day + 46

2009-03-24T19:17:00.000-07:00

Ryan,

Here is another Poem that was written for you by you friend Kai in England's mom.

Ryan is a dinosaur….
He just as strong, that’s for sure
When he plays you should hear him roar
His feet go thudding on the floor.
On Monday he’s a big T-rex
See how those muscles flex!
On Tuesday he’s a Brontosaurus
He’s hungry, he shouts “I want More-us!”
On Wednesday he’s a Triceratops
He’s big and loud and never stops
On Thursday he’s a Diplodocus
He’s magic too, Hocus-pocus!
On Friday he’s a Pterodactylus
He’s got wings, he makes no fuss
Come the weekend he’s an Iguanadon
His 5 metres tall and just as long
His energy goes on and on….
Ryan is a dinosaur
When you hear thunder, it’s Ryan’s roar
His footprints will stay forevermore
Ryan you’re big and brave, and that’s for sure!!
Get better soon big boy
xxx

March 23rd Day + 46

2009-03-24T10:50:00.000-07:00

Ryan,

Trevor's mom cindy just sent mommy a poem that she knew that I would relate to, so I thought I would share.

He's My Son-By Mark Schultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tiredI'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill up her eyes
Can you hear me?
Am I getting through onight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See he's not just anyone
He's my son
Sometimes late at night
I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I beLiving without him here
He's so tired and he's scared
Let him know that You're there
Can you hear me?
Can you see him?
Please don't leave him
He's my son

March 26th- Day +46

2009-03-24T10:01:00.000-07:00

Ryan,

Your spirits are still good. Yesterday and today have not been good days in the sense of eating and drinking. Ryan it is so important that you eat to sustain your weight and drink to keep from getting dehydrated. I place a call in to Kim at the hospital as your stools have increased, so I am worried that you will not keep your weight up and that you will end up dehydrated.

Yesterday you received a bear named Cromwell from Olivia and Merideth in Montreal.
A note came with it that said he need a place to live and a good friend and that you would be perfect. How they new he liked to do all the things you like do is amazing.
He like to go to the park, watch Diego and wonder pets, he even like Tim Horton's Tim bits.
When I read the note to you, you said mommy that is everything I like. You hugged him and took him to bed last night. When daddy came in to tuck you in at late last night, you woke up and asked daddy, where is Cromwell. Daddy tucked him back in beside you.

Ryan, Village Hair Studio has asked mommy if they can do a cut-a-thon on April 5th in your honor with all proceeds raised to go to Sick Kids. Mommy is truly amazed at how you have touched so many people. Mommy and Ally will be going to support this cause as Sick Kids, or as you would call it The Sick Kids hotel has been so good to us. Ryan there are so many children at Sick kids fighting just like you and who need help and even other's who just has visits every once in a while.
We all need this hospital. It is truly an amazing place, should anyone every have to visit.

You are sleeping now after a very long morning. I think you are started to get cabin fever and it is to cold to go outside. You are so sensitive to the cold these days and I do not want you to get sick. A few more days honey and we will go outside.

I love you so much

Mommy

March 23rd Day + 45

2009-03-23T05:38:00.000-07:00

Ryan,

You have a nice weekend. We did not do very much.
You spent alot of time with your Granadad. He brought you a fishing rod, so you can go fishing this summer. Something to look forward to.

Kayla was here for the weekend, and you all had a great time together.

The basement is getting there, it should not be much longer until you will have your own place to play.

You are taking you medicine like a trooper. I am so happy this is no longer the battle it once was.

Your bowl movements have increased since we have lowered the medication as per Dr. Gassass.
You also had a bit of a rash on the weekend. Mommy called the hospital and they said to keep everything status quo and call on Monday to talk to Kim and they will decide if we need to adjust the medicines again. We do not want you to have to many loose stools.

We went for a drive yesterday and you slept through the whole thing. We just wanted to get you out of the house for a little while. You went to the park and had a nice time on the swings. You love the red swing so much and never want to get off of it.

Pretty great weekend.

Love ya

March 20th -Day + 42

2009-03-20T08:07:00.000-07:00

Ryan,

You had a great day yesterday. Your cousin Ethan came over at 10 am and stayed until 7:30 pm. You played so nicely together and it was wonderful to see you playing again and having fun.
Mommy hardly saw you. I missed it so much as we have spent the last 5 months together, but got great pleasure that you were having a nice time.

When Ethan left last night, you told me mommy he forgot the giraffe I gave him to remember me by. My heart sank. You will understand when you are older that people read into what other people say.
Something that mommy has to stop doing, as you are only three and just trying to find a way to communicate your thoughts to Daddy and I.

Daddy and I stayed up last night and asked oursleves when this journey would get better. We came up with it will never get better. November 15th was a day that changed our life forever, and now we look forward and see a life of uncertainty. If you get through this we will always wonder if your cancer will come back, and if you don't we will never get over it and we will never be the same people we once were.

I write my thoughts Ryan, so that when you are old enough to have this blog you will see what an amazing person you are. That you will understand how difficult this was for all of us and how you being sick has affected so many people. That this is just a bump in your path of life. That you are destined to do wonderful things. And that once you get through this you can look back on this and see what you have overcome. So you can see all the people that cheered you along the way and supported our family throught this difficult time.
This will make you stronger. This will make us stronger.

I also write this blog, because it is a way for mommy to cope and deal with all of this. To get my thoughts out and not to bottle them up. Mommy is so worried about you. I want you to be one of those miracle stories that we always hear about in the news. I am worried about your daddy and your sisters aswell. Ally is so young and will probably not remember alot of this. Kayla understands most of it and has her sad days, and I know that Daddy has his quiet moments away from us all. He is doing a great job of being so strong and holding it all together. But I know he is hurting just like the rest of us.

The basement is almost done. It was a work in progress and it was being done slow. Daddy and I with the advise of Grandad decided to move it along quicker, so you have a place to go as you are isolated for now. Hopefully it will be done in a few more weeks.

Ryan, I mentioned in a previous blog that I was not impressed with the cleaners that were in to reduce the amount of dust in the house. Gina called back today and they will be back next week to redo all the dusting in the house. Mommy was happy that they decided to do this. It only maked sense as it was not done properly.

You are asking for lunch now, so I will finish for today.

Love ya

Mommy

March 18th -Day + 40

2009-03-18T13:28:00.000-07:00

Ryan,

So we are just getting home from the hospital. Your first visit post transplant.
You needed your lines accessed for them to do your routine blood work. You were happy to help. We sat with the Dr. and asked if the fish test ( your sisters cells vs your cells ) were in and we were told no.
Daddy asked if they could call for the results as we were told it would only take 4-5 days to get the answers. (Daddy was very anxious.) The Dr. said that she would call and see if they were in and just not put into the computer.
We waited about 40 mintues and we were told that your routine blood work looked off. Daddy, again asked if she had called for the fish test and she looked at us and said we will take about this later with Dr. Gassass. I am not sure if it was how she said it or the look on her face, but Daddy and I both new that it was not great news.
The re-did you routine blood work and we waited another 40 minutes.

Dr. Gassass then came in and said the first test this morning must have been a bad sample as your Red count was very low and did not make much sense.

your counts today were;

WBC- 6.1
RBC- 89
PLT - 164
Poly's - 2.89

Dr. Gassass said this is all good. He then went on to say that he need to let us know that the fish test came back as 197 cells as Ally's and 3 cells were Ryans.
When they do the test they take 200 cells and check to see what the ratio is.
This works out to 1.5% of the cell are your and 98.5% are All'y'.
Daddy and I were hoping that you had 10% Ally's cells, but this is not the case sweetheart. We know have a new bump in our road and your journey. We now have to decrease one medication (cyclosporine) to see if Ally's cells can destroy the remainder of your cells. The fact that you still have some of your own cells put you at greater risk of relapsing.
You will be monitored every week as usual and then we will do the fish test every second week to see what your cells are doing.
Should this not work ( decreasing the medicine) our next step will be to look at Ally again.
Dr. Gassass called it a DLI. DLI means that they would inject Ally with a drug and increase her white cells and then harvest them and infuse them into you. This would mean that Ally would have to be put under again and her hospital stay this time would be 3-4 days. Dr. Gassass has told us not to panic yet.

Mommy has had her tears today and is now thinking positive as that is the only thing I can do.
You are everything to us, and to know that the transplant was not 100% successful is hard to swallow. We wish this journey for you was over and you could get back to your normal life.
It seems as if this journey will be a little longer than we thought honey.
Ryan remember, things in life are not always easy, sometimes there are bumps in the road and then the good things come to those who wait.
Ryan, you just told me " Mommy don't worry I will be fine"
We love you so much

Mommy.

March 16 - Day + 38

2009-03-16T17:28:00.000-07:00

Ryan,

What a busy day we have had. It is 8:20 pm and I am ready for bed. You are however wide awake on the couch and hooked up to you friend Fred. You just told me you like being hooked to him, I asked you why and you said " because I love him mommy".

You were up early (7:30) coughing and a runny nose. I was concerned and put a call into the hospital to our contact nurse Kim. Our home nurse checked you out and said that your chest was clear. That put my mind at ease a little.

You are taking your medicine with no problems now, so that is once less worry. We have got it from taking 1 hour to about 3 minutes. Go Daddy. All credit for this goes to Dave. He has the touch.

Kim called back at about 9 am and said that if all was clear fluid in your nose and what you were coughing up, that we should not get to worried. I told her about your legs and she said to watch it.
They see sore legs mostly amoungst the older kids and the parents call in upset as they think the cancer is back, as it is the first common sign of childhood luekemia. She told me to remember, Ryan has been bed ridden for 6 weeks and he is home and probably using the muscles more.
She said we will do blood work on Wednesday and see what his counts are.

The cleaners were here and unfortunatley they did not do the greatest job, I will be calling to complain about that in the morning. Daddy could not believe it when he got home.

Steve was here completing last minute things in the basement, and all I could hear over the vacuum was him calling my name. so I ran downstair and he looked at me and said I think I need to go to the hospital. he looked in shock and then said that he had a bleeder and sliced his finger. Ryan mommy is not just your nurse, but is becoming a nurse to all in need.
I ran and got some of you supplies and wrapped his finger and taped it to apply pressure to the wound. Wow, it was a good one Steve. By the time he left for the hospital, the blood was soaked through. I think Steve was more worried about me passing out than his hand.

Then the steam cleaners came and cleaned the couches, so we are up and running finally.

Kayla is coming over for St. Patty's day tomorrow night and we have to be at the hospital early on Wednesday for you first appointment post transplant.

Gramma and Grandad are coming on Wednesday and you have asked more than once for your grandad as you want him to take you fishing. I don't think that will happen this trip, but soon honey, when the weather is warmer.

Lots to look forward to this week.

Mommy

March 15th- Day + 37

2009-03-15T18:01:00.000-07:00

Hi Ryan,

You have had a nice weekend. You played out side yesterday with Daddy and Ally.
You also went with mommy to the O'leary house to drop off our change and a donation as they have a party each year in honor of Mrs. O'leary's father who passed away from Luekemia in January of 2008. There house was decorated in green for St. Patty's day and you acted very shy. Mr. O'leary gave you a hat and a St. Patty's day necklace and a balloon.

You have complained about your legs hurting at the end of the day. Daddy and Mommy of course worried as sore legs is one of the first signs of Juvenille Luekemia. You are also complaining that you are cold. So we have kept the windows closed and the heat on.

Mommy and Daddy are getting anxious for Wednesday, we think that might be the day we find out if the transplant indeed worked. We are crossing everything and praying that it did.

I got an email from your friend John Bishay's mom and she said that he has all of his sister's cells, so that is wonderful news and we wish them all the best in ther journey.

Today you went to the park with Daddy in the morning, while mommy went to do some errands.
I decided to repace all of our cleaning supplies with new once to ensure all dust is removed from our house. I called in the duct people to clean all our ducts today, so again you went to the park as I thought is was better you were out of the house in case any dust came up.

The cleaners are coming tomorrow to clean the house from top to bottom. We should be up and running soon.

You are sleeping pretty well and I think Daddy is feeling left out as I think I am in your bed more than my own.

We have not seem your cousins since we got home as we have been waiting for the all clear from your Auntie Nicole that the boys are completely over there colds.

We went for a small visit tonight and they also wore there masks so you would not think you were the only one. Ethan thought is was great. Aidan not so much.

We have done bath time and you are now hooked to Fred for the night. You also took both of your medicines like the tropper you are. This is getting better every day.

Mommy had a few tears tonight and you asked me why and I told you that is was because I was sad your legs hurt and you do not want to walk. you said mommy I will walk down the stairs if you stop crying. What a caring little boy you are. Always looking out for me.

I hope you sleep well tonight. Sweet Dreams!!!!

Mommy

March 13th- Day + 35

2009-03-13T12:29:00.000-07:00

Ryan,

So far so good, you are doing great.

Mommy has been working hard to get our house in order for you.
I have called in professionals to clean all the air ducts to alliviate any dust, they will be here on Sunday. I have also called in the cleaners to do a one over on the house to get rid of all the dust that may be lying around. all I have left to do is find someone to steam clean the couch and chairs.

Kayla and Ally are coming home tonight to see you and you are so looking forward to it. Hopefully we will rent some movies and have a nice dinner together.

I went last night and gave blood, as so many people need it. You have opened my eyes to that.
Daddy wants to give, but can not as he was in Ireland at a time that the blood was tainted.

Auntie Nicole and Uncle Shayne also went. This is something we will do every two months, in order to give back.

After giving blood I went to see Sherry, Steve and Stevie and Aunt Tina met me there for tea and I brought home a beautiful red bike that was donated to the charity event for our family.
You were amazed by it. You have been riding it around the house all day.

Mommy read a story in the Milton paper about a family who has a party every year, in honor of a man that passed away from Luekemia and they serve drinks and food and all they ask is that their friends and family bring there loose change. I have put a call in to see if the family can give me a call, so you and your sisters can donate some of your piggy bank money. Everything raised goes to sick kids. Ryan sick kids has taken such great care of you and given you, with the help of Ally a fighting chance. I know you don't understand this now, but Daddy and I will explain it as you get older.

We are still having problems with your medications. You really don't like them, but are managing with great difficulty to get them down.
I have become quite the nurse Ryan, I can not only clean you central lines, but I can also hook you up to your overnight hydration. you would have guessed it could be so easy. I love it.
Maybe I should become a nurse.????????

We went out today in the car for a drive, we stopped at your aunts house because you wanted to drop off chips to your friends. You are not allowed to go in at this time, but can be on the street with your mask, so your friends came out to say hello to you. You had a nice time, it was only about 10 minutes but you enjoyed it alot.

We read 5 stories today and then you took a nap. You were so tired.
You woke up with pains in your tummy , so I will keep an eye on how frequent they are.
Ryan, you need to drink more, you are finding it very hard to do, but we will continue to work on this.

Stay strong my little man, you are doing great.

Love ya

March 11- Day + 33 First Day Home

2009-03-11T18:27:00.000-07:00

Ryan,

We drove home yesterday from the hospital and it was amazing; you were looking everywhere and making comments on everything you saw. From the taxi cabs to the dinos in the park. I thought, sure Ryan, there are no dinos in the park and guess what I was wrong. There was a statue of a stegosaurus right in front of us.

When we drove into the driveway there were dinosaur balloons on the porch and you thought that that was just great...Thanks to the Raymond family.

We had dinner together and it was like night and day, you asked for everything under the sun. Daddy and I were so pleased.

The nurse came to set you up for hydration last night and that went very well. Your mommy is becoming quite the nurse these days.

When the nurse left, of course the pumps started beeping, with my five minute lesson, I was able to flush it and restart it all. Thank goodness otherwise we would probably have been driving back down for hydration at the hospital.

8pm came, that is medicine time now 3 medicines that really don’t taste that great. We struggle through it, but we manage.

You had a wonderful sleep in your bed and only called out once in the night.

When you woke this morning, we turned off the pumped, flushed and heplocked your central line.

We came down for breakfast and you wanted toast with Jam, so mommy got a bit smarter and put your most important medicine in the jam and spread it on your toast...you loved it, you said it was so good.

We had a great day, we played, we watched some TV, read some stories and then you took a nap.

When you woke up, you and I went for a walk to the mail box on your request and once we stepped outside, you said it was to cold. I tried to tell you but you did not want to listen.

You did not really do great on dinner or your fluid intake today, but we will continue to work on that tomorrow.

You took you medicine a little better tonight and then chased it down with milk. Daddy told you, you could have some popcorn, so you are now sitting on the couch eating it.

You turned to me and said, "Mommy I have a heart, and you are in it" GO HABS GO"
I cried and you wiped my tears away, like you always do, when you see me cry.

Ryan you have such a wonderful heart and personality.
I want to thank you for giving me the opportunity to be your mom. I am so very honoured and proud.

I love you more each day.

Love
Mommy.

March 10- Day + 32

2009-03-10T08:45:00.000-07:00

Ryan,

YOU DID ITWE ARE GOING HOME TODAY! HOORAY!

You are still finding it hard to take those meds, but we get trough them every time.

Counts today:

WBC- 2.1
RBC -81
PLT - 103
POLY'S - 0.78

Ryan, for everyone that reads your blog, I will continue to post. It may not be everyday, but it will be on any milestones, clinic days or any major hurdles or triumps that we face.
For the first week that we are home, I will post as we are still doing home hydration and nurses will be coming to the house to monitor you.

Love Mommy,

March 9th - Day + 31

2009-03-09T08:01:00.000-07:00

Ryan,

You had a good day yesterday, with the exception of taking your medication.
I don't blame you as they taste horrible. It is aweful to watch you struggle with this.

We walked the halls and played with your toys.
Your sister Kayla came down for lunch and you had such a nice visit.
Gramma and Grandad came later in the afternoon on there way back to Montreal, and you made a wood boat with Grandad which we painted last night and you decided to call your boat, Pika Grandad.. (I am sure your grandad would be proud to be part of the pokemons)

Auntie Nicole, Uncle Shayne and the boys were going to come, but Ethan and Aidan were just getting over there coughs so did not want to give you any germs.

Your counts yesterday were

WBC- 2.3
RBC -88
PLT -88
Poly's 1.0

You have woken up this morning and taken your medication a little bit better, but still with some tears. We have taken a walk downstairs and your feet and legs are now in need of a rest.

One of the nurses just came in and told us we will probably go home on Wednesday. I have questioned this as we were told probably today. They say you are ready but I guess there is a lot more to do then just letting us leave. You are in need of over night hydration, so you have to get hooked up to IV at night at home, so a nurse will have to come and visit us each day.

So we will wait to see what the verdict is on your discharge.

Your counts today :

WBC- 1.7
RBC- 101
PLT - 88
Poly's - .56

Daddy has dropped Ally off and is off to work for the day, I am sure he will be in to visit you at some point today.

So now it is just a waiting game to see when we can go home and resume a some what of a normal life.

Ryan you have done an amazing job.
I want to thank your sister Ally for giving you a chance of beating this disease.
Ally you are an angel that was sent from god to help your brother. Daddy and mommy are so very proud of you. When you are older, you will understand what an amazing thing you have done.
I want to thank your Auntie Nicole and Uncle Shayne for taking Ally in to your home for the last 4 months on and off in order to help us out. And for organizing the blood drive in Milton.
Your Grandma and Grandad for coming every second weekend to help us out at the house and getting it ready for you to come home.
Your daddy's family for keeping in touch and sending support our way every day and for the visits we received just before Christmas and during Christmas.
The Thomas and Dos Santos family for all there support.
Kayla's mommy's family for all there support.
Tina and her entire family for everything they have done for our family.
All of our neighbours and friends for everything they have done.
Sylvie, Bill, Karen, Jeff and there family for all of there support.
Craig for his help with the webiste and keeping it updated.
Maggie, Trish, Shirly and there families for putting together a blood drive in Montreal.
The Hospital for sick Kids ( doctors, nurses and staff ) they have made our stay here as enjoyable as it can possibly be. Ryan acutally probably would not mind staying. There is way more to do here than at home.

Really mommy just wants to thank everyone for all the support we have received during this very difficult time.

Ryan,

You are looking good, and mommy and daddy send you all the positive vibes that you need to continue to do well and fight this disease. We will, as a family take it one day at a time, we will celebrate every success and we will fight every hurdle that comes our way.
Together we can do this and one day we will look back on this as a bump in the road.

We all love you,

Mommy.

March 7th- Day + 29

2009-03-07T07:03:00.001-08:00

Ryan,

Mommy took a day to herself yesterday, it has been a long time since I have done that, and I am not complaining, but it was needed.

Yesterday was the day of the fundraiser for our family that your Aunt Tina, Sherry, Steve, Stevie and Dinni and her family, and the rest of the Hammond family put together. Mommy and Daddy thank them all from the bottom of our hearts.

Ryan, when god gave out best friends, your mommy got the best one, your Aunt Tina is one amazing woman, so warm and giving and always there for everyone. I can only hope that one day you are a lucky as I am, and find a friend that you can call your best friend.

Ryan, Lisa Raitt (MP for Halton and minister of Natural Resourses) her husband Dave and two sons also came out to support us last night.

Wendy and her husband, came representing the mayor of Milton.

Ryan you would have loved it, there was so many people there who are praying for you, so many of your friends were there, and all I could think was Ryan would love to be here.

Mommy wants to take this oppurtunity to again, thank everyone who has supported us in any way through this journey. We love you all.

Mommy would also like to announce that you can all do " THE POLY DANCE"
RYAN HAS ENGRAFTED!!!!!!!!!!!!!!!!!!
RYAN I THINK THE ANGELS HEARD US ALL ROARING LAST NIGHT!

I have already danced and cried this morning, what great news Ryan YOU DID IT.
We could not be more proud of you.

You told daddy this morning, "Daddy can I walk the halls today, because it has been a very long time"

Ryan, you can and it will only get better from here, soon you will be home and we will be able to have alot of family time and in time you will be able to see all your friends. We will take it one day at a time.

Counts today:

WBC -1.4
RBC - 81
PLT - 65
Poly's - 0.53 YEAH

Ryan, Grandad is with you now, because your daddy was not feeling well and did not want to get you sick and mommy will be there tonight to celebrate with you.

Love always,

Mommy

March 5th - Day + 27 addtional news

2009-03-05T12:41:00.000-08:00

Ryan,

I decided to post yet again today!
I thought it was important to let every one that is following your blog know that your Dr's have been in this morning and said you are doing great.

Actual polys are: 0.37 not 0.34 so even better than I thought earlier this morning.

So they have decided that if you engraft over the weekend and you continue to eat and drink like you are :

You Guessed it:

WE ARE GOING HOME NEXT WEEK!!!!!!!!!!!!!!

I am so looking forward to you sleeping in your own bed, being with your family in your own home and getting back to a "new" normal kind of life.

We all love you so much, this is not the end of the journey, but one step closer to what we all pray for, "a wonderful outcome "to this bump in the road.

Mommy

March 5th- Day + 27

2009-03-05T05:40:00.000-08:00

Ryan,

You had a fantastic day yesterday.
The dr's came in yesterday morning that as you were eating small amounts they would be taking you off of your food suppliments. They also said that they would balance your electrolytes if needed as that was being balanced in the suppliments as well.

So needless to say you have got over another hurdle. With that being said, they are expecting 1250ml in fluid a day. 750 ml to be giving in over night hydration ( IV) and the rest you have to do. So I am proud to say that yesterday you were able to get down 505ml. Another stepping stone accomplished.

You ate a good dinner considering, 1 chicken finger, 3 pieces of brocolli and some cucumber.
I guess the TPN suppliment really did keep you full.

We watched some TV again last night ( you guessed it Jurrasic Park # 2) and then you wanted to watch Youtube. I was asking myself how does he know about youtube and videos and you keep saying "mommy, daddy lets me watch the snake eat the rat" Nice Dave.
I watched one video and had to draw the line as I don't like to look at them. Ryan is now asking for a snake as a pet and he can keep it in a cage in his room. (I dont think so)

Mary Sunshine will be in today to see Ryan later today and Dave will be here tonight to take over.

The Dr's seem to think that you will be in step down early next week. Ryan I can not wait, you will be able to walk the halls soon.

Your counts today:

WBC- 1.4
RBC - 88
PLT -54
Poly's 0.34 we are now only 0.16 away from our poly dance.

This morning you asked me for a hot chocolate from Tim's but the nurse said no. It was a good thing that I had instant hot chocolate here, so I made you some with hot milk. I put it into a tim's cup so you did not know the difference and you have drank the whole cup. I have no dought that you will reach the 500 ml that you need to acheive today.

Mommy's next task it getting our family back together slowly once you are home, I am sure it will take some time, but in the end we will all be together again. I can not wait.

Keep up the great work Ryan.

Hug and Kisses
Mommy

March 4th Day + 26

2009-03-04T05:27:00.000-08:00

Ryan,

Before I start today's blog, I need to apologize to everyone who is reading for my poor spelling and puntuation. It was brought to my father's attention yesterday that I am my father's daughter. I guess it is in the genes. Thanks Robin. I guess with that being said I can admit I am not the greatest speller and am not always sure where to put my comas, but in my defense I do write fast and do not check the spelling as Ryan is always looking for something or needs me, so before I bind it for Ryan it will have to be reviewed. On another note, there is no spell check on here that I can find, that would be a great help.

Ryan,

You had a wonderful day yesterday, you ate a nice picnic lunch on the ground with your dinosaurs. You had a 1/4 of a grilled cheese sandwich and some brocolli with a glass of milk.
Your liquid intake yesterday was 260ml, all the nurses were impressed.

Mary sunshine came to visit and let you borrow a batman until Thursday night, she told you that you could have him for 2 sleeps. You were so nice that you gave her something to keep until Thursday as well.

Your counts today:

WBC: 1.3 (up a little )
RBC- 88
PLT - 53
Poly's - 0.24 slowly rising.

I think we may have to put our shoes on hold to do our dance until next week. Take you time sweetheart, all that matters is that you get better and beat this. So, if it takes a bit longer for us to get our dance that is ok with me.

Your breakfast today has started off poor, you will not eat anything, but you keep telling me you are hungry, so hopefully we can get lunch in and some more liquid.

Mommy is going to lunch today with Sylvie. Karen, unfortunatley is unable to make it, so hopefully I will see her tomorrow for coffee.

Daddy will be coming around noon to have lunch with you. I am sure you will have him on the floor with your dino's for a picnic as you will be un-locked from Fred for a few hours.

Hope you have a great day today Ryan

Love,
Mommy.

March 3rd - Day + 25

2009-03-03T06:16:00.000-08:00

Ryan,

Last night you had a bit of a reaction to one of your medicines so Ashley gave you some benadryl. You fell asleep at 7:30 and did not wake until 8:30 this morning. What a great sleep.

You are giving me a hard time taking the medicine that the Dr's want you to take. I dont blame you, it does not taste very good. So I have put it into your milk in hopes that you will drink it.
You did manage to get 1/4 of a hard boiled egg down, and a bite of bacon. We will continue to try through out the day.

Mary Sunshine is here today, that I know you will enjoy. They have now asked her to come in the morning for you, as you seem to fall asleep in the early afternoon and have missed her a few times.

Daddy will be down for a visit around noon, so that will be nice for you and for mommy, a we did not get to see him yesterday.

Your counts today are:

WBC- 1.1 down from yesterday
RBC- 88
PLT - 44
Poly's 0.19

Dr.Gassas say you are taking you time, and I am not surprised as you have alway been a a little boy that does things in his own time, you can not be pushed to do something. I think you get that from me.

Ryan we are getting closer to your poly dance. We are only 0.3 away from it. My toes are starting ot get ready. I can not wait for you to be able to get out of this room and walk the halls.
Maybe once we are out of the room, you will be more inclined to eat and drink and do what we use to do.

Then it will be getting back to our old routine once we are home. Wow, home that sounds so nice..I can not wait for you to be back in your surroundings and enjoying all your toys, your room, your stool at the breakfast bar. The little things. I am so looking forward to this day,as I am sure you are to.

Love you,
Mommy
XXXXXX

March 2nd- Day + 24

2009-03-02T10:40:00.000-08:00

Ryan,

Last night when you were falling asleep, you asked me for the Angel that hand on Fred.
It has Alexandria's name on it and you told me you were thinking of her and that she was your angel. Ryan you are so right, she is your Angel.

Daddy, Kayla , Ally, Gern , Carol Ann and Mike had a nice dinner last night at Jack Astor's, Kayla was going to go home with Daddy and ally, but got sad that you were not going to be there.
I told Daddy to tell KK that you will be home before we all know it.. What a day that will be.

Your white counts today are 1.3. Horray!!!!!
The Dr.'s have been in and said that you are taking your time. They are worried that you are not eating yet, but this is also common after transplant. They will be giving you a medicine to stimulate your tummy to want to eat.

You are doing better, but I guess not enough that they think you can sustain your weight.

So counts today:

WBC - 1.3
RBC - 94
PLT -44
POLY's - 0.10 they have gone down. This can happen as it all depends on the sample they get.

When Dr. Gassass came in he said that the poly's went down, but the mono's are coming up and we usually see that before the poly's rise..so he thinks they are on there way up.

It is very cold outside today from what the nurses tell me and you are in a very good mood today.

You have been asking to do your own blood withdrawls and the nurses are letting you help.
I think Dr. Mira was shocked when she came in and saw you pulling back the needle to get your blood out.

Your are sleeping now as I write, as you were up at the crack of dawn this morning.

Sweet Dreams,
Mommy.

March 1st- Day + 23

2009-03-01T17:16:00.000-08:00

Ryan,

Mommy is back, and I heard that you had a rough night on Friday after I left.
Daddy said that you were sick every hour on the hour. Mommy was so sad that you were not feeling well. But daddy has told me that since Saturday morning you are back to your normal self, feeling much better in yourself.

I got to talk to you on Skype on Saturday night at 10pm and you were in a great mood and talked to me forever. I am so glad to see you are feeling more like yourself.

I got to you Aunt's house and had dinner with Ally and put her to bed. I was going to bunk in with her that night, but Ethan and Aidan had a sleepover in Ethan's bed, so I got Aidan's room and it was the best sleep ever, plus Auntie Nicole said Ally would sleep longer if there was no one else in the room. That worked for me. Thanks Aidan.
Ryan Aidan's bed is the best sleep in the house.

Ally and I went out and ran some errands on Saturday and of course ended up at the mall. Such a girl thing to do.
She was not pleased, and by the time we left she was over tired and cried all the way home.
I am not sure if it is poor Ally or poor Mommy.

She napped from 2- 4 and then we went to Sherry, Steve's and Stevies and met Aunt Tina there.
We had a nice dinner and then I took Ally home to put her to bed.

This morning we had Cameo, Nick, Charlotte and Gabriel over and we also had Michelle, Savannah and Carlisle over. Jamie, Melanie and Colby stopped by and dropped over some of Jamie's yummy birthday cake and then we had Katherine over for tea this afternoon.

Ally and I then drove back to the hospital where Daddy and I did the trade. He has now gone to meet Kayla for dinner at Jack Astor's with Ally.

Your counts have not really changed since Friday, we are holding at

WBC - 0.7
RBC -89
PLT - 48 going up
Poly's - 0.13 a bit more and closer to step down.

Dr. Gassas ( transplant Dr) came in to talk to Daddy and told us everything is going well and that it is a bit early for GVHD. So we will wait and see what this week brings. Friday is the day they take your blood to find out what percentage of cells are Ally's and what percentage are yours.
We want them all to be Ally's so we will pray for that this week. Those results will take about 2 weeks. We also hope that you are in step down this week and are able to walk the halls with a mask.

Keep up the great work Ryan. We are all so proud of you.

Love Mommy

XXXXXXXX

February 27- Day + 21

2009-02-27T07:17:00.000-08:00

Ryan,

You had a hard time yesterday getting any food or drink down, but you managed to get 190 ml of milk in last night. Unfotunaltley it all came up about 2 hours later and you were complaining alot about tummy pain and wanted to lay very still.

We have watched all the Jurrasic Park movies now and we are watching the first one again now.

I woke up this morning and there was a big note on the board saying your whites were 0.7 and that you now have poly's 0.11, so we need 0.39 more to go until the dance.

Counts are :

WBC- 0.7
RBC- 89
PLT - 36 holding for now.

You have had some milk this morning, so it is a start and you had a few froot loops...so hopefully it will progress as the day goes on.

You should be in step down in a few day and we will see the nurses do there dance. I think Mommy and everyone we know will be doing the poly dance to.

Ryan, Daddy cute Ally's hair. I think that is a mommy daughter thing, he cute her bangs, which I have been growing for a long time. So now I have to start all over again. He told me we had this talk, but I do not recall telling him to cut them short, what I remember is, "please just cut the ones that are in her face and leave the rest"...What was he thinking. LOL

Ryan, can't wait to see what the next couple of days hold. Daddy and Mummy are on a high right now. I am sure that once day + 28 hits and they do your blood test we will start to stress again.
I have been told it take about 2 weeks to get the results, so we will be doing alot of praying and hoping again.

Love you,

M0mmy

February 26th- Day + 20

2009-02-26T05:34:00.000-08:00

Ryan,

You ate yesterday, we started with crakers, then moved on to penne pasta, a bite of a bannana and then at 9 pm last night you asked for pickles, but you were specific, they had to be long, big and juicy pickles.
Your daddy luckly was still downtown, he went to 4 stores and called me to say he could not find any...you were so upset. About 20 minutes later he called back and said he found a jar and was bringing up to you...your face was amazing. We saw the biggest smile.

Ashley, your nurse from the day before knew you liked dinosaurs, so she send up the Jurassic Park trilogy for you to watch. So we started with the first movie last night, I was amazed you stayed up to watch it as you were up so early yesterday morning. We had such a nice night.

All your food stayed down, so this is another hurdle I think we have passed.

Mary Sunshine will be in today to see you, and we will watch the second movie n teh jurassic park series.

Daddy is not coming down today, as he has a very busy day with work and he needs to make sure that he is back for Kayla and Ally. They are going to have dinner with Cameo, Nick, Charlotte and Gabriel. Ryan we need to remind daddy not to forget the wine and dessert. Hopefully he reads mommy's blog today.

Your counts are stable:

WBC- 0.5
RBC- 90
PLT -38

I have been told that the poly test gets done on Monday's, Wednesdays and Friday so that will be done tomorrowwe (hopefully there will be a few) Mommy has her fingers crossed...and I am sure everyone who reads the blog and is thinking of you has there's crossed to.
We are waiting for that poly dance...I think Mommy will join the nurses in this celebration. You will probably wonder what we are doing and why we look silly, dancing by your bed.
When you are older and read this you will understand why we are celebrating.

February 25th Day +19

2009-02-25T12:41:00.000-08:00

Ryan,

Day 19 and you have asked to go home and have your birthday. The only problem with this is that you are not willing to eat or drink....
We continue to try and get you to eat something. Dr. Mira has reduced your TPN ( food suppliment) to try to get you stimulated to eat. You antibiotics have been discontinued, and your morphine reduced yet again to .41....Thing are looking good.

Counts today:

WBC - 0.5
RBC -86
PLT - 59 again you got a good bag of platelets yesterday.

Mommy went for lunch today with Karen and Sylvie and had a wonderful time. We laughed and laughed and had a fun time. Ryan they both have children just about your age and you will meet them all when we are out of here. Mommy needs a break some days and I know one day you will understand that when you read about your journey. You cried when I left and told me if I left you something would happen to you. Wow, how you get to my heart. How do you know how to hit me where it hurts...I felt really bad, but knew your were in good hands with your daddy. Sylvie, Karen I had a great time. Thank you so much. Dave is jeleous, he wishes he went.

Mary Sunshine came yesterday while you were sleeping and dropped of a pokemon book. how lucky you are. She will be back on Thursday to read it to you.

So now we need those poly to rise so you can leave your room for a little while..This will come in time. Your legs are starting to hurt, that is because you have been in bed for 3 weeks straigt. They have told me we can give you a shot of morphine if it gets really bad.

All in all, they tell me you are a text book case. no major issues yet and that you have the best Dr. in the hospital on your case..Ryan you are in good hands..

You are getting a little more bold every day, it must be a good sign, I know it must be so hard to be 31/2 and stuck in this little room.

Baby, it wont be to much longer, hang in there..
I love you so much,

Mommy
XOXXOXO

February 24th - Day + 18

2009-02-24T06:12:00.000-08:00

Good Morning Ryan,

You are not in the greatest spirits this morning, probably the benadryl....You get sleeply with this and you feel asleep last night as your tummy was not feeling very well and you were sick.

You are in need of platelets this moring and a blood transfusion....double whammy.....
I guess it is a good thing that Mary Sunshine will be in this afternoon, that will surely cheer you up.

Ryan, it is Tanya and Carol Ann Birthday today, so we hope that they have a wonderful day....

Counts today:

WBC - 0.3 same as yesterday
RBC - 70
PLT - 21

Mommy is hoping that Mira come in today and tells us that we can take the 2 anitbiotics away.
She told us yesterday that if your white's went up or remained the same that we would, and if you spiked a fever again we can restart them.

The nurse told us this morning it is really cold outside, it is a good thing we dont have to go anywhere today and maybe by the time we are out of here we will have warmer weather.

Daddy picked up Kayla last night and then your cousin Ethan and took them for dinner last night, they had a great time.

Daddy will be down for a visit later and again tomorrow so mommy can have lunch with Karen and Sylvie. (looking forward to it)

Keep up the great work Ryan,
Love you,
Mommy

February 23rd - Day +17

2009-02-23T10:25:00.000-08:00

Ryan,

We watched the Oscars last night together and I think I fell asleep before you did..
You were loving watching Walle and the Kung Fu Panda clips as well as the dancing....
I did not hear you in the night, not once....Krista your nurse told me you did not wake and that she changed you twice in the night, something I usually do..I was so tired.

When we woke this morning, we woke to Julie, one of you favorite nurses telling us your white count was at o.3.....it is moving up you are doing so well.

As today is Monday, all the team on Unit 8B get together to discuss all the children on the ward and then the Dr.s come in and visit with us and let us know what is going on.

Dr. Mira came in and had her thumbs up, saying you are doing amazing and she is so proud of you. If your counts tomorrow are the same or higher they will take you off of your antibiotics, as they absorb into the liver and kidneys making them work a bit harder.

You continue not to want to eat anything, but this is common as chemo can affect the way things taste...and I have been told that you may like things you did not before and may dislike things you really liked before.. usually it is the stronger tasting things that children like after transplant..

We are going to have some issues when we get home as you love Strawberries, blueberries and blackberries. and they have all been listed as things you can not have...as they are harder to wash and are sprayed with chemicals....but we will come up with some new things that you like..

I have asked our social worker to register you with childrens wish foundation, so they are in the process of doing that for you.. hopefully once we have the all clear we can go away (the five of us) once you are better and your immune system is stronger..(we will play this by ear)

Counts today:

WBC - 0.3
RBC- 81
PLT - 30

Hopefully you will be engrafted sometime next week and then it will be a matter of getting you eating and drinking enough that they feel confident you will not get dehydrated. If you can do this we may get a few day passes home from about 2pm- 9pm and then back to sleep and hydration and then discharge....this will all depend on how you are doing and as long as no complications arise....

Ryan we are getting there....

Mommy.

February 22nd - Day + 16

2009-02-22T07:10:00.000-08:00

Ryan,

We are day +16 and you may be on the way to engraftment..

Daddy called this morning to tell me the nurse came in and said Whites are 0.2......I asked for the rest of the number and he had no clue. I think Daddy was just as anxious as mommy, but would never let on. the nurse has now told us we need to be looking for graft vs host...

as vibrant red rash on the palms of your hand and the soles of your feet...we want a small amount of this....and so very loose stools is a good sign aswell.

They do have the possibility of going back down tomorrow, but for today I am the happiest person ever. It's a start.

It is your aunt's birthday today and she wished for this last night when she blew out her candles. That is all she wanted for her special day. Nicole you got your wish.

There is something about the # 22 I think, for all of you who do not know, that is the number of the house where Nicole and I grew up in Montreal. It is also , the day of Nicole and Ally's birthdays....and now it is the day Ryan's counts came up higher than 0.1....

You had a great day yesterday, Daddy said that you are your old self again....Ryan you are doing great....Your liver test this morning are down significantly, another great sign...

Counts today:

WBC - 0.2

RBC -76

PLT - 43

See you soon sweetheart....

Mommy

February 21st - Day + 15

2009-02-21T11:46:00.000-08:00

Ryan,

I left you last night and you were ok....I am so glad ...Daddy called me last night to tell me all the things you were saying....you are funny when you want to be.
I called and you were fast asleep by 9:30 pm and you slept until 8:30 am and you did not wake.

Your counts today :

WBC - o.1
RBC - 95
PLT - 17 so another transfusion scheduled for this morning...

I called you to see how you were doing and you seemed to sound a little down, probably all the medication.

I talked to your nurse today and we have dropped your morphine level from 1.22 to 1.0.
I asked her about the 0.1 white count and she told me it is the same as > 0.1 really....
she said that she knows we are anxious at this point but it is still early yet..so we continue to wait for your counts to rise.

Daddy tells me you are eating Froot loops and drinking... wonderful news and that they ran your liver counts again and they are down...everything seems to be on track Ryan.

I will be back at the hospital tomorrow to see you ....Keep up the great work sweetheart...we are all fighting right beside you ....Ally has done her job and now your body needs to let it work..

Ally and I went to the mall today to run soon erands and get you your Auntie Nicole a birthday gift and we stopped into say hello to our friend Leanne and we ended up staying for lunch....Thanks Leanne....it was fun....we then were heading home and decided to take a detour to Tim's to pick up coffee for Sherry and Steve..Happy Birthday Steve....

We were invited to Nicole's today to celebrate Chris's birthday but unfortunatley we could not make it as it is Auntie Nicole's birthday as well..Chris, Ryan says happy Birthday ....
Wow..February 22nd is a busy day for alot of people we know...
Happy Birthday to you all ....Enjoy.....Ryan can't wait to see you all ...hopefully it will be soon

On that note, we post again tomorrow....

February 20th - Day + 14

2009-02-20T09:30:00.000-08:00

Ryan,

You were able to get down 75 ml of apple juice yesterday and 40 ml of ginger ale...You took a bite of a grape popsicle....good for you. I think it was a bit early to take in so much, because just after you finished the ginger ale you spat it all up....that is ok.....

You slept well last night ( 8 pm - 8 am ) with a small interuption saying you wanted to be sick....and it was a very small amount and you were back out in minutes...

Today, you have been grumpy and daddy came to visit and you were not very nice to him.
Daddy has left at your request and will be back later for the weekend.. Poor Daddy!!!!

Your counts today:

WBC - 0.1 - maybe on the rise....but could fall back down again tomorrow....crossing my fingers
RBC -78
PLT - 22

You have had your benadryl and your transfusion and you are still awake....I amazed as you usually fall back to sleep....
We have played Lego this morning, and built a house and a car...

Mira was in today already and said that your liver counts are up again, but that you are getting ride of all the fluid that they are pumping you with. So that is a good thing.
They still do not think that you have the aveno oculsive disease because you are not retaining any fluid you are actually in teh negatives..She also said that your poop has changed color and could be a sign of graft VS host....she said it is a bit early as the counts have not come up yet ...but they will keep an eye on it all...

You are smiling alot more this afternoon at your TV shows....which I am thrilled about ..your smile is so great and you are talking so much more ....

You are being a mommy's boy today, you want only me to be in the room, you have told all the nurses to leave and the Dr's not to talk to me ....

Ryan you said you would try to drink again for me today and you have kept down about 50 ml of apple juice so far today aswell....so I am pleased....as this will help us to go home faster as long as everything else stay in check ...

They are going to reduce you amount of Morphine as well as I do not think you need the higher dose...so we are taking you from 1.59 to 1.29......so another good thing.....

You really are amazing and I could not be any prouder of you, you have dealt with all of this so well, and have not really complained one bit...OK, maybe one bit, but not much more...and to be stuck in a room like you have been and still being so good...I love you.....

Mommy

February 19th -Day +13 Second entry

2009-02-19T11:54:00.000-08:00

Dr. has been in today and say that Ryan looks good...
The Ultrasound has come back and there is no sign of the Adveno Ocusual Disease...phew....
She said that once the bone marrow know where to go , it makes it's home there and then creates the new cells....
We think the mucositis is going away slowly, so it is possible that some of the cells have started to come up and have gone to fight the mucositis and have not hit the blood steam yet....so we wait....Mira, Ryan docotor is very calming....she make me feels so much better....she explains things in a way that makes sence and you can understand as a parent....Ryan really like her to..

Ryan has tried an orange popsicle for me thie morning, did not go very well...He played with it more than anything.

We also told him in order to go home, he will have to eat and drink again....so we started with trying to get him to swallow his own saliva, instead of spitting it out....it worked he is swallowing on his own...the only time I give him the bucket is if he has to throw up.....yeah Ryan ...you are doing so well.

He also had two sips of Apple Juice and swallowed it....Thank you Dave, you know how to get our son to do stuff....

I am going to order a whole tray of dinner tonight and see if he will eat something...easy things that slide down and we will let you all know how that goes tomorrow....

Have a good evening everyone...

February 19th - Day +13

2009-02-19T05:27:00.000-08:00

Good Morning,

No new news to report....Ryan had a good night last night....Vomiited at 4 am ....very small amount and slept really well....

As the days go on, it get harder and harder as I have not seen a change in his counts....
You don't expect this change before day 14, so the closer you get the more anxious you feel...

Counts today are:

WBC- .0.1
RBC - 76
PLT - 43
Billirubin - 4 same as yesterday.....but the nurse said all the other numbers have come down...
So today they will be very strick on his fluids and how much they are giving...

His Magnisium is down so they will readjust this in his TPN (his food suppliment) to ensure his joints are ok.

Ryan is still sleeping and I have just gotten up...so I am heading the shower as they alway make us feel a bit better....

If there is any more news to post later in the day I will post again..

Success Story from sick kids that was in the news today ....

2009-02-18T16:23:00.000-08:00

http://www.thestar.com/article/589098

Article about a teen who was not given long to live as she needed a double lung transplant....
Sick kids has a doctor that created a artifical lung that was used to keep this beautiful teen alive until a doner could be found....

Amazing, truly amazing.....and it just shows that miracles do happen and that we can not give up hope......

Have a good night everyone....

Febraury 18th - Day + 12

2009-02-18T08:36:00.000-08:00

Ryan,

Today is a good day to be inside. It looks cold and it is snowing..
You had a rough night, yet again last night. Throwing up at 9 pm,11pm, 2am, 4am, you had some tummy and throat pain....They gave you a boast of Morphine on top of your running drip to keep you confortable...
Because of the vomiiting and the nasal discharge showing traces of blood, you had a platlete transfusion last night at 10pm.

Today your levels are:

WBC -0.1
RBC - 95
PLT - 77 that must have been some good platletes (biggest increase I have seen since the effects of the chemo)

The nurse was just in and told me that your Billirubin is up ( means your liver is working harder than it needs to) so they are sending up a tech to do an ultrasound, and they have measured your tummy....Of course I jumped the gun and freaked out (as I am a worrier by nature) so they came in to talk to me to tell me this happens and that it will probably be back to normal tomorrow...so I pray this is the case...

The Dr. came in just after that as I think the nurses asked her to come and talk to me ....she said higher billitubin could mean the starts of the counts coming up, or could be a problem with your liver working harder than it should. If this is the case they can not do much for it, a use of medication and less fluids to give your liver and kidneys a break....

Ryan you look good....you are playing Playdo and watching TV. you talked to you cousins in Ireland this morning and we read some of your dinosaur book...

Your friend John engrafted this morning and they are getting him on track now to send him home....Hooray John we are so happy for you....this is a day to celebrate...we are all thrillled for you and your mom is over the moon today..

Daddy and I took about an hour break to visit with Karen Gordon, Bill Carroll and his wife Sylvie Carroll..They have all spent there own time down at Sick Kids with there children, so they understand first hand what we are going through. I want to thank them so much for coming down to see us, it really meant alot to Dave and I...just to get out of the room for a little while and talk about everyday things, and to laugh was great....Karen I thought of another person you could put as your profile pic (instead of Clonney or Gere, what about Matthew McConaughey) just a thought.

Hailey thank you so much for the LIVE STRONG braclets...they are awesome..and yellow is Ryan's favorite colour. (he says it is a happy colour). Ryan will be wearing one by the end of the day...

At 3Pm the tech came in to do the ultrasound, will probably be a day or two for the results...
Just as I thought you were about to take a nap, Donna came in to do your central line, dressing change....you fought it and cried so they gave you Ativan ....to try to relax you...I left the room and it was a things seemed to go well....I guess maybe I should leave you with the pretty nurses and things will run a bit smoother.....note to self....

Again, thank you everyone for all the support that you have show us as a family, we really do appreciate it.

Ryan my sweet boy, you have touched the hearts of so many people and you have so many people wishes you well and praying for you every day...

Sleep well baby, I love you.
Mommy.

February 17th - Day + 11

2009-02-17T07:08:00.000-08:00

I guess everyone is back at work today....Still looks sunny outside....
Ryan is talking today and has decided he likes my chair better than his bed, so I have put a clean sheet on it, and set him up there infront of the TV...

Cameo, we read his dinosaur encylopedia last night and he loved it...so I think we will continue to read a bit each night before he goes to sleep..

Ryan morphine was increased yesterday to 1.59, we started at a very low dose or .9, I aksed if he was getting alot of morphine and they tell me the dose is still quite low....so hopefully when we whene him off of it, it will be ok....He is having a hard time with the probe....they put it the childrens fingers when they are on Morphine( hospital policy) to monitor the heart rate....
He does not like this and keeps pulling it off....so the nurse of the day has to come in and put another one on.....

He keeps asking the nurses for pokers ( needles with blunt ends), bandaids and cleaning wipes...so he can pretend to give me poke and I have to say I have 5 bandaids on my hands right now...I am going to try and take it down to 2....

He is retaining some water now, so they are keeping an eye on that....so needless to say his weight is up....just a bit...

It is a waiting game....I think every morning this will be the day and they come in and tell me the whites are comihng up, but we are still below > .1 ...It is like watching water boil...until you walk away it does not boil.
So I think I will stop asking until they come in and do the dance....I have been told there is a poly dance that the nurses do, one the levels start to come up...

Mary Sunshine is here today, so something to look forward to....I might need to hire her to come to the house...he loves her so much ...I wonder if she does home visits....

As I am writting , Ryan just said I want to go home now mommy.....oh how I wish....maybe another good sign....he is ready to leave.....to bad the whites have not given us the same sign...

He will probably need a transfusion for platelets and blood tomorrow...

Levels today

WBC -> .1
RBC - 76
PLt - 32

Katheryn and Steven, children of 2 of the parents I have been close to while during our visit here..both got to go home for the day yesterday and then had to report back last night....
There counts are up and they are starting to eat and drink, so they will probably be going home later this week... Hooray, Hooray, Hooray, I bet they can not wait to be home and back to a normal routine....Ryan this will be us soon....

will post again tomororw...

Suzie

February 16th- Day + 10

2009-02-16T08:29:00.001-08:00

Good Morning,

It looks sunny outside today. Ryan was sick right before bed last night but then had a really good night...he slept right though until 8:30 this morning..as for myself, it was a restless sleep. I tossed and turned and was up to change him a few times in the night...Woke at 7:30 this morning and watched Diane Lane and Richard Gere in Night in Rodanthe...Not to bad...

Ryan woke and again is spitting his saliva every few minutes...but in general is in good spirits and has spoken quite a bit this morning..I am happy to see this as I was starting to get a little to quiet around here..I was only hearing the sounds of Fred when he started to beep....

Ryan's counts's today:

WBC - > .1
RBC - 85
PLT -25

An order has been put in for his transfusion, so Benadryl again and he will most likely fall asleep..

Ryan was actually smiling for his cousin Sophie and his Auntie Geraldine. They called this morning on Skype to talk to him....He didn't say much, but he did poke his toungue out at them...maybe we are on our way to some better days and the numbers will start to come up soon...I am crossing my fingers, toes and anything else I can cross....

Dave and Ally are having breakfast with Nicole and the boys this morning...Dave went to the store this morning to get some grocceries and found out they were all closed.....

Honey, you live in Ontario, it is family day today.....I know, dates and times get away from you when you are confined to a little room for 4 days....Sorry babe, I should have reminded you last night....I can not help but laugh...Thank goodness for RABBA...24/7.........

For those of you in Ontario, Happy Family Day.
Hope everyone is having a nice day...

What is the weather like...is it warm out there today?

February 15th - Day + 9

2009-02-15T16:43:00.000-08:00

Today's blog is a little late....Just got back to the hospital. Had planned to come back tomorrow, but could not say away another night...Dave has left to go home and get some uninterupted sleep.

Ryan had another bad night last night. Alot of pain in his throat and tummy. His morphine has been increased by 20%. He is not talking and spitting up his mucus every few minutes...Poor little guy, but still he is not complaining. I just finished giving him a bath.

Overall he looks well to me....His eyes are a bit red, probably from lack of a full night's sleep and the drugs..

Counts today:

WBC - > 0.1
RBC 85
PLT -42

Before Dave left, I went downstairs to get something to eat...I ran into a lady and her daughter that we had met when we first got diagnosed back in November...This little girl taught Ryan how to ride his pole....much easier way to get around..I could not help but cry when she asked me how Ryan was and then told me that her daughter was cancer free for 2 month and she has relapsed and the cancer is back.. She said they were looking to get there life back in order, travel this summer etc. I pray that Megan gets better soon.

Many of the children that went to transplant a week before Ryan are going into step down and will soon be going home...This is also hard as you develop relationships with the parents as we are all going through the same thing and are hoping for the very best and we all try to stay so positive..

Well going to spend sometime with Ryan now...Will write again tomorrow.
Have a good night everyone...

February 14th Day +8

2009-02-14T11:26:00.000-08:00

Happy Valentine's Day! Hope everyone is having a wonderful day!

Dave I miss you and love you!

Yesterday continued to be bad for Ryan, he had alot of pain in his mouth. He slept quite a bit, on and off..He was holding in all of his saliva and then pointing to spit it out....my poor little guy, what I would give for him not to have to feel this.

I drove home last night (left in rush hour) 5:30 will not ever do that again. I made it to Milton at 7:30 what a drive....really it gave me to much time to think, and that lead to my personal cry time. Probably not a good thing to be doing while driving...

I questioned why, why, why, why? An Answer, Dave and I will never know.

Another bad night,Ryan was up vomitting and in alot of pain...Dave called me this morning to tell me Ryan's counts:

WBC - 0.1

RBC -85

PLT -25 after the transfusion yesterday.

The Dr.s decided to give him another transfusion today as they said they dropped so rapidly last time that they do not want to wait today....so again the Benadryl to prevent a reaction.

I tried calling Ryan on Skype this morning, and was able to see him, he would not talk ( his mouth is probably to sore) I miss his voice so much.

Ryan has not talked in 2 days and has not had any thing to eat or drink for the same amout of time.

Hopefully, the counts will start to climb this week and the mucositis will start to subside.

Resting at home as Ally was sick in the night and I was not feeling good either...

It is a holiday on Monday ( Family Day ) so Dave may have to do another night, if I can not shake this run down feeling..

Going to mass in the morning at our Church with Ally, we are going to go and say a pray for Ryan, Tina and her parents will be joining us, Nicole and the boys might be coming to... Prayers in numbers right?????

So, to everyone have a wonderful long weekend and I will post again tomorrow.

Suzie

February 12th, Day +7

2009-02-13T10:33:00.000-08:00

Hey Everyone,

Ryan won Bingo yesterday and the Marlies hockey team were here, so as Ryan is in isolation they came up and delivered his toys to him and a signed poster of the Marlies hockey team. WAY TO GO RYAN.......

Dave was here last night and I think mostly everything went well...
When I got here this morning, Ryan was sleeping, drug enduced as his platelets fell in the night to 10 so he had his transfusion this morning ( with dose of Benadryl first to ensure he does not react) he has vomitted and has alot of pain in his tummy, mouth and thoat. I dont anticipate this going away any time soon. He is holding his mouth closed today and I have noticed it is filling up with Saliva..So I have now put a bowl in front of him to spit in to...He is not talking, just pointing.

His eyes are heavy, and look sleepy...his hair is almot gone....he is actually pulling it out himself and handing it to Dave or myself....Oh how my heart aches for him...I know I would not be as brave as what he has been....I am so very proud of him...

Last night, I had a hard time falling asleep, although I know that I need the break or I am not going to be any good to him, I could not help but miss him like crazy....I think Dave and I feel we do not want to miss even one minute with him....I saw Ally for a little while last night and she is doing great....her lower back looks fine, still the marks from the needles but she does not seem to be in any pain.

Ryan and I made his Valentine's card yesterday and a little gift for everyone on the floor yesterday and we delivered them today as we knew the hospital was celebrating Valentines today....so he has had lots of surprises... I stepped out for a few minutes today and when I came back, Ryan had a special delivery arrive...Thank you, Agatha, Derek, Maddy and James....

So our next thing to look forward to is the day he starts to engraft and then on day +28 they do a blood test to find out how many cells are Ally's and if any are Ryan's....so what we want to see is 100% Ally. Once his counts start coming up and his Poly's are 0.5 for more than 3 days we can move to step down and then we have to get him whened off the Morphine and stating to eat and drink again.....something I hear that can take alot of time because the children are so scared of it hurting when they try to eat of drink.

I will be going home tonight to see Ally and back on Monday morning, so Dave can spend some time with Ally and Kalya...

Happy Valentine's Day everyone....Enjoy....

Suzie

February 12th- Day + 6

2009-02-12T09:31:00.000-08:00

I would like to mention a few things before I start today's blog.

I would like to wish my bestest friend Tina a very HAPPY BIRTHDAY! Hope you are having a great day.

To Trish, Maggie, Shirley, Richard and my Mom and Dad, Dave and I would like to thank you for all your hard work in organizing yesterdays blood drive. I have been told that you had 116 pints of blood donated. That is another 348 people who can be helped. That is absolutely amazing...Thank you so much. We love you all.

To everyone who went to donate and couldn't, thank you, and to every one that could, thank you and to all the volunteers and nurses, thank you.

Ryan fell asleep last night at 11:45, tried to get him to go earlier but he just wouldn't and I have to pick my battles as we are in such a confined space, with no real routine. With that being said, we had a parent meeting yesterday, this is the first one I have attending, mostly because I was unsure of what they talked about and I did not want to get more upset than I already have been.

To my surprise it was nice, parents talked about what to expect when talking there children home, how to disipline our children on the unit. Some really good ideas came out of it..so I think I will go again next week...

Ryan's hair is falling out fast, this has made me very emotional, I knew it would happen, I even had his hair cut (brush cut) before we came in to lessen the effects to myself. I have realized it does not matter how short his hair is, it still comes out in batches... He woke this morning with hair in his face, on his pillow in his bed and he screamed...I have told him, it is ok and it will grow back.

We have made notes to our nurses, called I love my nurse because ( and the children have to fill out why) Ryan came up with, because they are pretty and they bring me pokemon stuff...so that is on the wall in the unit....we have also made Valentine bags...with stickers..Ryan did his all on his own, that is hanging outside his door...As I am going home today, I am going to pick up something small for each of the children on the ward to put in there bags.... We have already done there valentines cards....Theme :Kung Fu Panda...

Ryan woke up vomitting again this morning at 7:00 am and is very tired today.
His mouth looks swollen, and his lip are stuck in a pout like position, I think his mouth hurts as he had not said much today.
They have told me they will start a Morphine drip today to control his pain...He will also get his last dose of Methotrexate (chemo) to prevent to much graft vs host. This may make his mucositis worse.

Today, Mary Sunshine will be around and we have Bingo on TV at 2 pm...so that will occupy him for an hour or so, if he does not fall asleep first...

Counts today:

WBC - 0.1 up from > 0.1 this could mean the starts of engraftment or it may just fluctuate for a few day between 0.1 and >0.1.
RBC - 101 up from yesterday
PLT - 20 down again, expected.....they will not be transfusing as > 20 is when they transfuse unless and other indications, like bleeding gums, nose bleeds or any other form of a bleed.

I am so tired. This week has been very emtional and exhausting, but we knew this was going to happen and so far all as we say on the ward, if the Dr. say all of this is expected, then we are doing ok....

Tomorrow is Friday, I bet we are all looking forward to the weekend.

Hugs
XXXXXX

February 11 - DAy + 5

2009-02-11T05:32:00.000-08:00

Today is Blood Doner clinic in Montreal. I am sure it will be a huge success. I know that Trish, Maggie and Shirly have worked so very hard on this...Thanks to you all, it means the world to us.

Dave picked Kayla up from school yesterday and then picked up Ally from my sisters so he could spend some time with them. Kayla had two of her friends ( Charlotte and Jaden over for dinner)
she has not seen them since Ryan was admitted for transplant, so we thought this would be fun for her.) Ally spent some time with her Daddy and then put herself to sleep. (this is a new thing)
Her new word is (ouch, ouch and she says it for anything , we think it is funny. Once she was in bed, and Kayla's friend went home, Dave spent so time with KK before bed.

Ryan had a good night until about 3 am, then his throat, tummy and bum were hurting..This is Mucositis.. Michelle was his nurse again last night, she is great...She gave him Morphine at about 5:30 and again at 7:30 as the pain did not seem to subside..The Dr. will decide today if he should be put on a running drip of not.

Ryan's hair is starting to flake off onto his pillow now, he is none the wiser yet. He seems comfortable now. Not eating or drinking, that is expected.

We talked to his new fellow ( we call her Dr. Mira), which is one step above a resident and one below the staff Dr...(the staff Dr. over sees the entire unit.)
Mira told us yesterday that this is her first JMML patient. We asked alot of questions with regards to how Ryan is doing. She told us that it is good that he came in with no blasts, however even with no blasts, there usually is a few cells hiding somewhere in the blood, so that is why they blast Ryan's marrow with high levels of chemo, hoping to get those last cells and block his bone marrow before transplant and then infuse Ally's. This makes sense.. She said that usually with a sibling doner we see the engraftment at about two weeks, sometimes 3..
We also learnt that it is not just Ryan that has a 50 % chance of relapse, we thought that was the relapse rate of his disease..it seems that transplant either works or it dosn't (for all the children up here) which also makes sense when you think about it.
So now we wait for some sign of (graft vs host) and (graft vs Luekemia).

Ryans counts today:

WBC- less than 0.1
RBC - 94 after transfusion yesterday
PLT-34 after transfusion yesterday.

From our window we can see that it look dull over Toronto today. Not sure how cold it is, have not been outside since Sunday.
Providing Ryan is ok , I will be leaving tomorrow night to see my best friend Tina as it is her birthday, and then to see Ally. Then back to SKH for friday and home for the weekend to see Ally.

Hope everyone is having a nice week!

February 10th- Day +4

2009-02-10T05:42:00.000-08:00

Ryan had a bad evening last night. The mucocitis has set in. His thoat is very sore and his lips are swollen a little. He was given some morphine for pain at 7pm last night. I thought it would put him to sleep, but it did the complete opposite..he was wired for about 2 hours.

He was talking in circles, and then he hold me he will never leave me. I said you promise, he said yes, but continued to tell me "but mommy I can leave you when I get married to a nice girl, right mommy" I tried not to cry, and told him yes.

I got an email from a friend of a friend in Milton who's little girl (Savannah) asked for donations for Ryan in lieu of gifts for her birthday. How amazing, a little girl who gave up her birthday gifts to give to an illness that has touched someone in her community...Savannah you are truely amazing. All being well ,I will see her on the weekend to thank her personally.

We also received a beautiful gift that was dropped off to the hospital last night, unfortunatley we did not get to meet the families, but thank them so very much for there kindness and generosity.
Two beautiful blankets with Ryan and Ally names on them and a lunch bag with Kayla's name on it... all in a beautful pillowcase with the the Hyland family embroidered on it, absolutely beautiful.

I spoke with my sister last night and Ally continues to do great, no isses with her lower back and seems to be healing nicely. I got to hear her voice on the phone last night, she is trying so hard to talk. I am so lucky to have such a great sister and brother in law who is keeping me posted on everything I am missing with Ally and taking such great care of her,while I am at the hospital during the week. I look forward to my weekends with her, to see her beautiful smile and to get lots of hugs. It gets me through to the next weekend. Ally I miss you so much, and know that you are to young to really get it, but know when you are told this story in years to come you would not have it any other way.

Today, Ryan woke up screaming in pain, both in his thoat and tummy. Another dose of morphine to ease his pain.He then realized a picutre that Michelle our nurse from last night made for him...Dinosaurs, lots of dinosaurs, he loved it.
Our nurse today, Gina has been in to inform me that Ryan will be in need of a blood and platlet transfusion today. So we start with Benadryl as Ryan reacts to platlets, then the bag goes up and then we will move on to the blood. Should be a busy day.

Counts this morning:

WBC - 0.1
RBC - 74
PLT - 20

Dave said to me on Saturday that it would be a very long week as he thought this would all set in. I was not so sure..I guess hoping he would not be in this much pain and the side effects would not be so servre.Dave you were right, it is only Tuesday and it feels like I have been here for a week.

Hopefully tomorrow will be a better day for Ryan.

Suzie

February 9th- Day + 3

2009-02-09T07:52:00.000-08:00

We made it through the first weekend after transplant..a few small issues but nothing that is out of the ordinary.
For anyone who is reading this blog and is located in the montreal area, there is a blood drive being held in Ryan honor (in Beaconsfield, detail on ryansroar.ca) on February 11th, that was put together by good friends Trish, Maggie and there mom Shirly...we would love to see anyone there to donate..remember one pint of blood can save 3 peoples live...that is amazing...something I was unaware of until Ryan became sick...it just opens our eyes to the little things that we can do to help another person in need..I donated my first time in honor of Ryan in Milton at the blood drive my sister organized on Jan 15th and I am set to do it again in March...What a great feeling to know you have help someone in the world. Thanks Trish, Maggie and Shirly to all there efforts in putting this drive together.

We dont really read into the things are children say or do, but now I wonder about everything that Ryan says, probably my own mind, as he is still the same boy doing the same things he did before he was diagnosed.

Ryan said to me last night, mommy I love you, I told him I love you to Ryan and he said but dont forget it mommy...he said this morning, mommy I am thinking of Ally..

On a lighter note, he has a higher pitched voice, Dave told me this over the phone on the weekend and I said sure Dave...now I her and yes it is higher pitched...they say this is a side effect from the Chemo.

He has had some pain this morning in tummy and has been to the toilet 5 times already....I wish I could do more to make him feel better...

No signs of an mucositis yet...so no need for morphine yet.
Ryan has 2 doses of a medication to reduce the severity of graft vs host. that was administered on day +1, today and will be administered again on Day +6.

We had a nurse just before transplant name Julie and she and Ryan were talking and she was asking him about his pokemon's and he asked her for some pokemom stickers. She said she would try to find some, Ryan turned around and said "do you promise" because my grandad said when you make a promise you never break it..
Julie said I promise I will try Ryan....

So today , Susan our nurse came in and told him she had a surprise from Julie, when Ryan opened it up, he was so excited it was a pokemon figurine....even better than stickers...THANKS JULIE...he loves it...

Ryan counts are :

WBC- 0.1 - dropped and are in the toliet so I call it. they will now have to come up once he en grafts

RBC - 79 - big drop from yesterday, will probably need a blood transfusion in the next day or so

PLT- 31 not a big increase, will most likely need another transfusion for this aswell soon
Platlets do not hold a long life span even in healthy children or adults but our body
regenerates ours automatically where as Ryan's are comprimised.

Again, thank you to everyone for there prayers for our brave little boy. If you could all say a little prayer for one of Ryan's friend (Trevor) who is fighting a different form of Luekemia. there are so many little ones and older ones up here fighting this disease and these boy and girls are so very brave and special.
TREVOR, ryan misses you and asks about you often. I saw your mom this morning as you were here for a visit and a finger poke and she told me that we will look back on all of this when you and Ryan are off to university. I believe in my heart we will see this day for both of you...

Suzie
XXXXX

February 8th - Day +2

2009-02-08T08:13:00.000-08:00

Good Morning,

Ally continues to do well, bandages are now off...she has 2 little holes in either side of her lower back..But all looks well.

I went out last night with my neighbour for a well needed drink (pitcher of sangria). I had a great time something I think I have needed but did not want to take as Ryan and Ally so needed me..

I got a text from Dave last night at 10 pm that stated Ryan was in great form. I was thrilled.
I then received another text at 12:00 am stating he had his first fever....that was a concern. Dave said that the nurses said they had been expecting a fever it was just a matter of time.
He has now been put on 2 forms of antibiotics and will remain on them until his body has excepted Ally marrow.

He has woken up this morning and had his sponge bath and bed sheets have been changed. That is a daily routine that can not be skipped.

His fever has since disappeared, but now his platlets have dropped below the amount that they allow....20.....Ryans are sitting at 17......so he will be transfused to ensure he does not bleed.
This is also excepted as in previous blogs I have said they will go up and down throught the process...Platlets have always been Ryan main issue...as he has already had ab out 18 transfusion since November 15th, 2008.

So we wait and continue to monitor him every 4 hours...

Counts:

WBC - 0.6
RBC - 91
PLT - 17

Ryan is watching TV and does not seem to be bothered....so that is a positive...as they say he will likely be put on morphine once the mucositis sets in ....not sure when that will be, this depends on each individual patient...

I will be heading back down to the hospital at 3:30 this afternoon, Ally will be dropped to Nicole and Kayla is with her grandad at the theatre watching the Sounds of Music, something I am sure she will enjoy....

Will post again tomorrow...Hope everyone had a nice weekend.

February 7th, Day +1

2009-02-07T09:43:00.000-08:00

Yesterday was hard for us all, but we are past that now, we now look forward to Ryan getting better..

I forgot to mention in yesterday blog that Dave had sent a beautiful email to CFRB (radio station) here in Toronto ( what a beautiful email it was) in short it basicly said that Bill Carroll the host of the show always opens up his family to us the public and his experiences. Dave wrote to thank him for that as he also has a child that visits sicks kids and it is easier for us as parents to come here knowing that other people think highly of SKH....it mentioned how they have somethings in possible and Dave was hoping that we never had SKH in common but now we do.
Then he went on to tell Ryan's story and Ally being a match... so they went on the air yesterday morning with the story and then Dave was interviewed for a few minutes....

All of this really makes us all realize what is truly important to us...Family, friends, health and happiness and love..not the cars, the big houses, money, trips...they are nice, but not important in the grand scheme of things... I would rather live knowing I have my kids, our family and friends and health than any amout of money in the world. ( it really does put it into perspective)

So I went home last night for the weekend to give TLC to Ally, but I find myself back at the hospital with Ryan as Dave had to run an important errand. So to date....Ally is doing great...she slept until 7:30 am and does not seem to be in any pain today....she has had a great breakfast and her bottle and my parents are watching her until I get back when I will bath her and take off her bandages...She has not needed any pain medication....

Ryan is also good, he ate 3/4 of a pancake this morning, 1/2 a bowl of cheerios and a chocolate...not bad for a little guy in his condition...

He looks extremely tired and will not eat his lunch....vitals are stable.....

His counts today are

WBC - 1.0 no change but it is expected to change soon.
RBC - 89 so up a bit
PLT - 31 so also up a bit...

I have talked to the nurse today and she tell me the Red and Platlets will fluctuate...
The whites will depleat to nothing very soon. Fever will set in and we wait for some sign of graft vs host (Ryan's body fighting Ally's marrow)...we want to see a small amount of this, not to much..sounds a bit strange as we want him to except it...what we want to see is graft vs Luekemia (Ally's marrow fighting the Luekemia)

I hope everyone is enjoying there weekend, will post again tomorrow or Monday.

Transplant Day - February 6th- Day 0

2009-02-07T05:07:00.001-08:00

The day we have been waiting for!
The First day of our new life. A day where we have been given a chance that Ryan can beat this, now it is up to Ryan body to do what it needs to do. And we will fight beside him all the way..

Ally arrived at 7 am and was pre - admitted and put in to the cutiest white hospital gowns...(pants, shirt and booties). She would not go to anyone else but her mommy....I guess that is what happens when you have not seen one of your children for 5 days....it breaks my heart....
So off went to the waiting room when they call you for surgery....I was worried that she would not go with the nurse in to the OR...they asked me if I was ok with her crying if she did...what could I say....so I said I guess so, this has to be done....so off she went and to my surprise she went quietly...(looking a bit scared but she did not cry) unless that happened once she was in the OR...we waited for what seemed like hours but was about an hour and a half and the DR. came out to tell me she was breathing on her own and all was good....They took 250 cc of her bone marrow to give to Ryan. The reason that amout is because Ally is so small, they could not take any more with out putting her at risk..She then went to recovery where she was out of sorts to say the least...she was very upset and in alot of pain ( Morphine was given x2 as her heart rate was up from the pain...) once she was calm I left her with Dave and went to clean Ryan old room to get all his things ready for the new isolation room. I also wanted to check in on Ryan to make sure he was doing ok...So needless to say this was a day of running from floor to floor..
With the help of Tanya and my parents we were able to go from Ryan to Ally with out worring about leaving them alone...I spent the afternoon upstair with Ryan wipping down his toys to bring into his new room and watching Ally bone marrow fuse into Ryan...He took the transplant great....no pre meds as Ally was such a good match and same blood time...so no real risk of any reaction....it toook 4 hours to run her bone marrow into Ryan but it was fine..ALL WENT WELL.
At about 6 pm I packed my stuff and said by to Dave and Ryan and went to see Ally just ot find out she could not leave as she had not peed all day, another concern.....
So we have to wait....she was in so much pain 9just crying and trying to get confortable.( oh how I wish I could have made it better) I held her and held her and finally she peed at about 7:15 so we were given the ok to leave....they administered so codine for the pain.

Ryan had his first bout of vomitting the night before...It was out of the blue, no warning..
It lasted about a minute and he said I feel better now...they say this can happen, they just feel sick and then they feel better... Ryan said mommy do you like the smell of my vomitt...I said now way, and then I asked him the same thing...he looked at me and said "NO"!!!!!!
I told him he was such a brave boy and his response to me was "yes I am" and off he went to sleep...the rest of the night was great.

Counts today :

WBC 1.0
RBC 84
PLT - 24

So dropping steadly we should see no whites tomorrow or about .1 or .2.....

To my sweet Alexandria,
You do no understand what you have given to your brother, but you have him the chance of life...As you get older we will explain this to you so you understand what a wonderful thing you have done. Without you " a perfect match and same blood type, ryan would not have the same chance to fight this disease.
You are truly Mommy and Daddy's angel, and I thank you so very much for being able to give him this hope. Hope for a life where he can do and be whatever he wants to be.
I have told your brother that you have given him your blood and he understands that your blood is in side of him and he said Mommy I love Ally and I am getting her good blood so I can get better and we can go home...

Sorry everyone for not posting this yesterday , I am sure you were all wondering.but by the time I got home I had no energy to do anything...

Thanks for all the prayers and please keep praying as this is the first step to a long road ahead. We now need Ryan body to except Ally's bone marrow and en graft...that ususally take about 2-3 weeks... and the we need him to stay in remission forever.........Ryan this is my hope and prayer for you, my sweet little boy....

XXXXXXX

February 5th Day -1

2009-02-05T16:21:00.001-08:00

Ryan has yet another good day! It boggles my mind that he has not had one episode of vommiting. (knock on wood) He is however showing signs of fatigue.. sleeping a bit more.
Eating again, probably because they stopped his food suppliment for 24 hours to give him is last dose of Chemo last night..

He woke up grumpy, who could blame him ( I dont want to be here, so I can only imagine what he thinks)

He asked for toast this morning so toast is what he got, then another piece and another and another...yes 4 pieces of toast...good for him .....nothing since but we are ok with that....

He played with his best buddy Mary Sunshine again today and she brought him some special coloring pages. (Pokemon).

Gramma and Grandad came for a visit but only got about 10 minutes in before he crashed out on the couch in the parents longue...

Counts today are :

WBC -1.7
RBC - 84
PLT - 31

I think they will be doing a blood test tonight to ensure they keep him above 20.....

Again addicited to the smurfs....Dave came down with figurines that he picked up at Square One and so nerds...that is what Ryan asked for...( who would have thought he would want NERD, lol)

We are thinking of our friend Trevor who just got admitted back into hospital with a fever...
Trevor we love you and are thinking of you and hope you get to go home soon.
For those of you who are not familar with Trevor, he is Ryan's friend they meet here at SKH in November when they were both diagnosed.

So we are ready for tomorrow, Dave is home with Ally getting her ready with my sister and parents. They have to be here for 7 am and her procedure is at 9 am ....she will be very cranky as she can not have her bottle in the morning..

This is it......HOPE, FAITH AND PRAYERS, there is something to be said about it all.
Once my monkey falls asleep I will head down to the chapel here to say a prayer for both of them.

Sleep well , will update you all tomorrow.

Hugs and kisses to you all,

XOXOXOXOXO

Febraury 5th - Day -1 Poem from a friend.

2009-02-05T09:00:00.000-08:00

I received this poem from a special lady who I think is amazing, brave and strong and inspires me to be the same....Thanks Michele. I know Jean Pierre is watching over Ryan.

YOUR SPECIAL ANGELI’m your special angel,On orders from above.To see that as a child of GodYou receive some special love.God sent me down to find you,I knew exactly where to look.For your name is written down,In God’s big address book.He said I’d recognize you,From you little turned-up nose.You’d also have two shell-like ears,Complete by two ear lobes.He gave me then a choice,Of you left ear or your right.Said I could stay on either one,So I’d be with you day and night.So, if you ear begin to tickle,From the flutter of my wings.Remember I’m an angel, And angels do those things.Now if you get to feeling sad,Or maybe kind of scared.Just tug upon your earlobe,I promise to be there.I’ll come straight to your rescue,Because that’s my job to do.God thinks you’re very special,That’s why he sent me down to you.

February 5 Day 1

2009-02-05T01:31:00.000-08:00

You will most likely see two entries today.
Ryan this entry is for you. Mommy has decided that once we are done with transplant, this blog will be printed off and binded for you so that when you are older you can she what a brave boy you really are.
It is 4 am and I am awake because once again your feet are itchy, I now ask myself if they are really itchy or if you are like me and just like them tickled...as you keep telling me to tickle not scratch ( and when I stop for a minute you don't seem to complain that they are itchy.)
For some reason I am now wide awake and am watching you sleep peacefully and can not help but cry, we are 1 day away from your transplant. I guess it is hitting me that this it, we need this to work, we need your body to except Ally's bone marrow and for your body to get rid of any reminance of your cells. Ryan you can do this, I know you can.
Ryan you are amazing, brave and have not complained once through this entire journey, a journey that you will probably not remember but one Daddy and I will never forget. The day we found out you had Luekemia was the worst day in our lives, a day that changed our lives forever. (2 days before we actually knew, we took you to the Dr as you had a bruise and purple dots all over you arm, once I got you to Dr. Walk he said you looked very pale and that your liver and spleen were enlarged. I knew in my heart something was terribly wrong, so I went home and researched and found luekemia. I called you daddy and told him my thoughts. Your daddy said to me, "I do not have a good feeling about this, Suzie". Dr. Walk had asked us to come back the next day to do some blood tests, I told him I wanted the results before Monday and he said he would call on Saturday...I put my faith in the system and waited. He called as promised at 2:15 pm just after I had put you down for a nap and told me I would not be wrong to take you to the hospital so off we went...that night it was confirmed, we just had to wait to find out what form of Luekemia you had. We went from praying that is was not Luekemia to hoping for the best form of Luekemia, 8 days later we found out that you have the rarest form of Luekemia (unfortunatley one whose only cure is a complete bone marrow transplant) and a 3o% chance of a family match.
So Daddy , Mommy and Alexandria had our blood tested to see if any of us match you in order to donate our bone marrow. Finally on December 19th, 2008 we were given our christmas miracle your baby sister a complete 6/6 HLA match, you could not ask for better. Ally is your little ANGEL, a gift from god that is going to save you. Daddy and I have HOPE and continue to believe that you are going to do great things in life and you are going bounce back from this bump in the road and continue on to do wonderful things. (you have to, there is no other choice)

Ryan the day you were born is a day I will never forget, the day after mother's day (May 10th, 2005. I had been in labour for 16 hours and you fought to stay in my tummy. They decided a c-section was best to bring you into the world. I had waited for this day for my entire life, but when they put you into my arms, I was so scared,( I had waited for you for so long and then I did not want to hold you) at that point in my life I realized I was not just responsible for me but for a new baby boy that needed me so very much to nuture him and take care of him and to give him a chance to grow into a stong little boy and eventually a man. Ryan love is not something that is automatic, it is something that grows with time, you and I had to get to know each other and learn each others ways, we had a hard time for eight weeks, we both cried all the time.
But I can tell you this my sweet little boy that over the last 3 1/2 years I have fallen in love with you a little bit more every day, your smile, your laugh, your voice, the funny way you grab my face to kiss me, and hug me every day and tell me you love me. We are now closer than I ever thought we could be. It is true what they say, boys are mommy boys...that you will always be.

Ryan, you being sick has truley made me realize the important things in life, love, happiness, you, your daddy, your sisters, ( Kayla and Ally) and the rest of our family. With out that nothing else matter.
I promise you that we will not give up HOPE and that mommy, daddy, Kayla, Ally,and everyone else that loves you, will fight with you every step of the way.
Ryan you have so many people praying for you all over the world, family, friends , and some people who dont know us, but have heard your story.

Get well sweetheart.

Love Mommy,

Love Mommy,
XOXOXOXOX

February 4th - Day -2

2009-02-04T06:55:00.000-08:00

Almot there, 2 days to go until Ryan receives his transplant...and is on a road to recovery.

Yesterday was long he did not sleep at all, trying to entertain a 3 year old for over 12 hours is hard to do, especially when in closed corners...
Luckily for us they had the clowns here yesterday so Ryan got to see Mary Sunshine, and then they have Bingo at 1 pm....The put it on the television and televise it from the Bear room on the 4th floor every 2 weeks...So yesterday the Bingo theme was "FIRE" they had the firefighters her to do the game and we watched from our TV, if the kids in the room win they go down to get there prize....so we played 2 games and Ryan won the second one, so off we went....When he got there he was given a fire fighter hat and of course Ryan road in on Fred his IV pole and they said they would love a ride like that ...So he had his few minutes of fame on the TV yesterday..

We took some walks went down stairs , he now has to wear a mask to leave the unit....counts are low...

He starts his last dose of Chemo in about 1 hour and it runs for about 1/2 an hour through his IV, I think this one is the strongest dose he will have...they told me to expect vomitting and nausea...so we will see...so far he has been able to hold his own.

He is hooked on cheese ( at least it is something) sips of water and apple juice....
We are taking a daily bath and washing the dinos and now the pokemon..

I found a few DVD of the smurfs he was hesitant at first and now is addicited to them, we are on DVD # 4....( bring back those child hood memories)

His night was good fell asleep at 9pm and I went to bed at 11, IV did not go off that much and from 2-7 I slept solid...yeah......

He has woken up and will not really open his mouth, few words and looks ill.....eyes are very dark and he is telling us he has a head ache...very common with all the chemo....he also say his feet have a head ache...

He is calling for me now so we are off until tomorrow...

Counts are:

WBC - 1.8
RBC 83 (reason he is so tired)
PLT 34

White blood counts fight infection, so Ryan is almost depleted.
Red blood count is enery and oxygen in his blood so the lower they are the more tired he will become
Platelets are what clots your blood so the lower they are the more risk of bleeding.

Hugs to all,

Ryan, Dave and Suzie

February 3rd day -3

2009-02-03T08:18:00.000-08:00

We are back,
Bit of a long night last night, Ryan feel asleep at 6:50 because he had no nap.
He was then awake at 10 pm just as I was going to get into bed. So we were up until he again fell asleep, once I acomplished that Dave called at 12 am to talk....then there are the IV pumps that beep all night and you need to push a button to call the nurse (so up I get about another 8 times ) Ryan was up at 4 am to play, (thinking no way) so back to sleep he went and then got up at 9:50 am. WHAT A NIGHT.

It is snowing here in TO this morning and we are lying in bed watching finding nemo....
Mary Sunshine is here and doing magic tricks with Ryan (he loves it)

He complained late in the day yesterday that his tummy was hurting and he has to throw up, and then looked at me and said but I am not going to, because I don't want to...(mind over matter) good for him.

He spent the day in his dino hat scaring the whole 8th floor. Ward A, B, C, D....everyone thought is was so cute....Cameo please thank your mom and let her know he loves the hat...

Counts are steadly dropping:

WBC - 3.0
RBC - 93
PLT - 39
His Poly are 2.08 so he will soon become neutrepenic and will not be able to fight a bacterial infection...

So as the whites keep falling the poly's will fall as well.

Everytime I look at him, all I want to do is cry, as I can not imagine my life with out him.I can only HOPE and pray everyday that he is strong enough to fight this disease. So far he is doing great as per the Dr's. Dave and I try to stay strong everyday, some days harder than others...He is a fighter so I will hold onto that.

Dave and I thank everyone for there messages, well wishes, phone calls, deliveries of food, everyone who reads the blog, messages on facebook.

Ryan is so lucky to have so many people routing for him.

February 2nd Day -4

2009-02-02T11:25:00.000-08:00

Reporting from room 69 on 8B is Ryan Hyland, he wishes to tell everyone he is brave and fighting his blood...(his words)

So round one of the new chemo is done and he has been given the steriod, so I am awaiting to see if he turns into a Jeckel and hyde personality..
Dave was down for lunch and Ryan has eaten froot loops and milk, spagetti noodles 3 mouth fulls with some chips and a minigo. He has had 3 looly pops and some apple juice. Oh yeah and a haagen dazs vanilla ice cream ( not bad for a little guys that is on suppliments for not eating)

He has played with Kim the volunteer this morning, so I ran down to get a bagel and tea from Tim's

Counts today are:

WBC - 4.3
RBC - 96
PLT- 43

Dr's do there rounds every day but on Monday's there are about 16 of them outside your door and 1-3 come in. When they got to us this morning Dr. Tal said everything is going to plan with Ryan so no need to do anything and she asked me if I had question and they were gone...so I guess that was good news.

Julie is our nurse today and she was also our nurse yesterday and she is amazing, sat with Dave and explained lots yesterday to him and also Nicole and Shayne.

Ryan is still in great form, busy, wants to do lots. Effects should hit in the next day or two...it seems like we are expecting reaction to things and they dont come ...good thing as I have been told by the nurse....we are on track ...
Ally is in good form heading in to Friday, so they have given me a list of things to do with her on Thursday night to prep her for Friday.

I think I will go home on Thursday to get her ready and then stay here on Saturday with Ryan .
She is doing such a great thing and I think I need to give her some TLC....and as long as Ryan is stable Dave can cope and call me if anything changes..

So that is the news for today from 8B- BMT unit at SCH in Toronto.
Signing off

February 1st - day -5

2009-02-02T05:51:00.000-08:00

I just want to thank Erin and Alex for coming to visit Ryan yesterday, as well as Nicole, Shayne , Ethan and Aidan, it really occupied alot of his time. Erin he had a bath last night with his Dino's.

Dave had updated me through the weekend that Ryan had stopped eating and they were considering putting him on a suppliment...

When Kayla and I got here last night, he was so happy to see us, so we hung out in the hall for a while and Ryan and Kayla played for a bit. Kayla gave him her sweater and he had it around his shoulders. Kayla he misses you so much, he watched you and Daddy leave from the window and saw that you took the stairs and daddy took the elevator and he said Kayla daddy won, the elevator was faster...I laguhed..He also said I don't want Kayla to go mommy....

He ate a few pieces of spagetti noodles for me last night and sipped on some milk....at this point whatever he asks for he gets (nurses said that will stop on Friday) strick diet....low bacteria....

He takes his medicine - Septra to prevent chest infections / and Dilantin to prevent seizures by him self...we play a bit of a game.I leave the room and he has to have it gone by the time I get back....so I walk outside and watch him and then I come back and he is so proud of himself...

His is addicted to his Nintendo DS ( Super Mario), he concentrates so much and get frustrated when he loses a man

So we are done with the 16 doses of Busulfan and the dilantin will stop later tomorrow.

We start the second form of Chemo tomorrow (stronger than the first) it is called Cyclophosphamide (this will be given on Monday and Tuesday) it will be given by IV and run over an hour....Side effect usually will start with in a day or two.

They will also give a drug to prevent his bladder from bleeding as this medicine can attach to the wall of the bladder and sometime they see some bleeding...(they said it usually happens in the older kids, as they tend to hold there pee, where as the youngers ones cant hold so hopefully this does not happen to Ryan

Counts today are :

WBC - 5.4
RBC - 96
PLT - 40 and holding

We saw some broken blood vessles under his eyes and one on his leg so we informed the nurse and they ran an CBC just to ensure the platelets were still holding (test was done at 8:45pm)
results:

WBC- 4.8
RBC - 96
PLT - 43 (so still holding) do not have to worry during the night....yeah

Will post again tomorrow.

January 31st Day -6

2009-01-31T13:24:00.000-08:00

A little late on the blog today, I am at home (actually my sisters house) can't bring myself to go home without Ryan and Dave. Kayla is with her mom this weekend and are busy with ballet and plans for dinner. Ally is also settled at Nicole's so why take her out of her environment. Ryan is still doing great, I have checked in with Dave and he is still eating, had a great breakfast and lunch and is now sleeping. He has his last does of Busafin tonight at 9 pm with a break tomorrow and then we start again on Monday with another cocktail of chemo.

They tell me to expect him to start feeling bad Thursday.

Ally and I spent a great day together, we took cloths to Dave at the hospital and then went to the mall to do a few errands..We saw our friend Leanne at visage and she gave us some lolly pops for Ryan. We then went to see my friend Tina, Sherry, Steve and Stevie where Ally had a ball with Bolder there dog and Maple there bird. Tina I think needs a nap as she was running after Ally..(right Tina)

Counts today:

WBC - 5.9

RBC 95

PLT - 40

Ryan is still playing and enjoying himself...He had a visitor today, Tania came down to see him, she was going to bring the girls but Sarah had a cough so she decided to leave the girls at home.

I am sure Ryan loved it as Lea gave him one of her Pokemon, Ryan's new favorite toy next to his dino's....

Our Child life specialist, ran around the hospital yesterday looking for anything to do with Dinos, and pokemons and she came back with a bucket of dino's and 3 pokemon movies.

Ryans was thrilled.

As a mother I am torn between where I am suppose to be, I know I need to be with Ryan but am missing Ally so much, she has not let me put her down since last night at 5 pm....

I guess the good thing is she will not remember this and with that being said Ryan may not remember either. So stay tunned I have not decided as to where I will be Friday night, with Ryan or with Ally. Her procedure is more invasive and the Dr's have told me she will need lots of TLC, and transplant is actually less invasive it is like a blood transfusion through his IV.

I think Ally needs to know that she has done a great thing for her brother.

I will wait and see what each of them need on Friday and decide from there.

My parents and Tania will also be at the hospital on Friday, we will all tag team to make sure the 2 of them are well taken care.

Will post again tomorrow. Have a great weekend

The Hylands

January 30th - Day -7

2009-01-30T08:05:00.000-08:00

Well we had a great night last night, Ryan is still a night owl( must take that after his father) adn an early riser( after his mother), but I did manage to get about 7 hours with a few interuptions.

Ryans is playing with a volunteer now and is having a ball...
Still no affects that are apparent from the Chemo. He is still his happy and funny self...

His dilantin medicine had to be inceased last night as the levels were low and they wanted to make sure he was not at risk for seizure...no affects there either...

He is getting really good at his DS now as he has lots of time to practice...
Leanne our child life representative has delivered alot of Pokemon movies for him to watch. He is thrilled.

Dave and I had a nice dinner in the room last night ...Shayne made some butter chicken and Paul made some pasta so we shared and it was so yummy.......thanks guys....

Bathtime is becoming a longer event in our lives...he has to wash all his toys....and we can not drain the water until it is done....

I am going home tonight to see Ally as I am missing her so much, I do however get to see her on Skype every night to send kisses her way.
I will be back on Sunday , so I guess it is a boy weekend for Ryan and Dave ( I guess that makes sense as it is Superbowl weekend) a guy thing.

Counts today :

WBC - 5.2
RBC - 91
Plt - 40

So another steady drop. He will get a platlets transfusion when he get down to about 20 on the PLT and a blood transfusion when he gets to around 70 on teh RBC. and at some point the white will be at 0, that is when he can not fight an infection and will be in isolation.

Ryan will be getting a visitor in a few minutes, his friend Trevor his here for treatment and will be coming to see him in the longue, so by for now

January 29th Day -8

2009-01-29T09:04:00.000-08:00

Well Ryan was up till 11 pm last night, I could not keep my eyes open...He would cry if I turned out the lights...so I talked to Child Life this morning and they told me to keep things a normal as possible. So if he does something wrong, disapline him as best we can. They say if we dont when we get home it will be difficult for us...

Today has gone well so far...
He had a great breakfast and no reacation to the chemo yet...we do not except this until sometime next week...probably around day -3 from what we are hearing.

Mary sunshine the clown was in this morning and he loved it...He looks for her all the time. I have to admit she is very funny..

We are going down to Marnies lounge today at 1 p, after his lunch so he can play for an hour and then back up for a nap. Transplant unit has a special time for everything as all the places have to be cleaned and disinfected before the kids can go down.

Ryan told me this morning : we can go home now mommy I have had enough here. Imagine we are only on day 3....

Counts today are

WBC - 6.2
RBC - 94
Plt - remain the same at 45

I saw a Dr. yesterday that was in the ER (he is a hematologist specialist)back in November. He was comiong out of the transplant unit and said what are you doing here...So I told him we were in transplant. (the look on his face) he said no one around here tell us anything. He then asked but who is the doner, they found one that quick, I said my daughter (he just said wow) that is amazing. Then I told him about the blasts (0 in the bone marrow ) and he said you could not be in a better position...

So so far very positive, I try not to get to far ahead of myself.
Well Lunch is here so we are off for now.
:)

January 28th - Day -9

2009-01-28T09:48:00.000-08:00

Ryan fell asleep last night at 7:50 pm, probably due to the dilantin.....he was talking funny in his sleep all night...telling me the meal train was coming (that is were we order all of his food from )

He started on his first dose of Chemo at 3 am and seemed to handle it fine....we had the second dose at 9 am this morning and he is still holding his own..Next dose 3pm and then 9pm and so on.until Saturday..His eyes look tired and his mood ( well lets just say it swings alot....) He is eating great so far so we are very lucky....weight on admission was 15.8 and yesterday it was 16.4 kg so a nice jump, today it was 16.1 so it is fluctuating.

Ryans theme song if you have not heard is: AINT NO MOUNTAIN HIGH ENOUGH, sings it all the time...

Counts today:

WBC - 5.2
RBC - 95
Plt- 45

So a gradual drop since yesterday...
It is now 1:40 and he is peacefully napping.

Dave and I can not thank everyone enough for all your support and well wishes..
Ryan is one lucky little boy to have so many who love him .

January 27th, 2009

2009-01-27T09:18:00.000-08:00

Ryan fell asleep last night at 11 pm and was awake at 4 am with itchy feet, that is nothing new...
Could be a reaction to the Septra ( preventative med for chest infections) or jsut part of the disease.
He fell back asleep at 4:30 and then was up at 6:45. He had a great breakfast and they administered Dilantin through this IV at 11: am( this is an anti seizure medicine) one that is used before they start his first form of Chem ( Busulfan ) which can cause seizures. It has made him v ery sleepy, they say it feels to them like they are drunk, so he may be dizzy when he walks so we have to be careful...

...he will continue on the Dilantin by mouth at a low dose to maintain levels so they can prevent seizures from occuring. The Chemo start in the middle of the night tonight starting at 3am and runs for 2 hours and they administer it every 6 hours...so he get a 4 hour break between doses....so that will run until Saturday at 7pm and then he has a break on Sunday with only hydration.

His counts are still ok, they are dropping, Whote count is 5.9, Red counts 101 and platelets are 49. We will not see them go back up until transplant is over as the chemo will start to kill the cells...so he will need platelets and blood tranfusions regularly....

We again start on Monday on another Chemo (Cyclophosphamide) for 2 days and then I think another chemo for Wednesday and Thursday and then Friday is the day....DAY (0).
Ally will come in and have her bone marrow harvested and then to Ryan in the afternoon and we go into isolation...

They came around this morning to change the posters in the room , so I can not wait until he wakes ups and sees the dinosaurs....
He got the Toronto Raptors signatures yesterday and the author Robert Munch is here today reading to the kids...Sick Kids is truely an amazing place..

will post more tomorrow, hope everyone is well.

First Day in New Home

2009-01-26T16:31:00.000-08:00

We are here, Ryan is in good form.

We have our proticol for the next 11 days....Wow alot of stuff to take in.
We have a room that has a bathroom for the next 10 days so that is great news as we thought we were going straight into isolation.

We have seen the doctors and they gave us our first piece of good news. Ryan has no blasts in his bone marrow, we were hoping for less than 20% and there is none...what this translates to is that he has no cancer cells (aka: like remission) Yeah....the doctor said that would be good for prognosis.( another Yeah)
We also found out that Ally is a match (blood type wise - o positive just like Ryan)

We know we have a long road ahead and we are praying every day that Ryans does well in the next 10 days and then well in transplant..I am sure that we will have some bumps along the way, but I remain hopeful that my little man beats this disease...
He is so cute, sunning around the hospital renaming all the staff...we have a person named Nick at the front desk and Ryan now calls him Scott....(funny)
Ryan being Ryan is a good thing, he has the fight and he also has the stubborness...I am hoping this works in his favour...

Signing off for now,

Suzie

All SET

2009-01-22T08:14:00.000-08:00

Hi Everyone,

Ryan is still doing well.
We were at the hospital on Tuesday and Wednesday this week. We have been up at 5:30 each morning in preparation for our days....We have our set date for transplant...we move in on Monday the 26th of January.. Ryan had all his pre-tests done and all looks good from what we know. He had a minor procedure yesterday with sidation and he asked if he could put himself to sleep...pretty ironic he injected his medicine and fell asleep sitting up, eyes open...
This procedure was to check the amount of immature white cell( bad cells) they call them "blasts" he body has, they are wanting those at less than 20%. We ran into his Dr and he said that we are so luckly to be going to tranplant this soon, and that it usually takes 6 months....
He woke up and was as hyper as could be...not what you would expect from a sick little boy....

We are off on Sunday to the hair dresser to have a buzz cut...that is more for me as I dont think I can handle watching his beautiful hair fall out.

So we start everything on Monday and will most likely be in hospital for 3 months...hopefully Ryan will do well (cross fingers) and we will be out in 2.....all being well and Ryan being safe...

We are anxious as it is like it is all starting again, but this time with much more at risk (they have to tell you it all, every possibiltiy that could happen in transplant...something you never want to hear. but we are very lucky to have a great support system, friend family and many other people that are supporting us through this difficult journey and we are very fortunate and thankful for that..
The one thing I do know is that the cancer that Ryan is fighting can not get his spirit as he is a trooper and he is still smiling after all he has already been through...
I have tried to explain in child terms that we are going to hospital on Monday and it will be for a while and he said to me, you a mean a very long time mommy. He is truly amazing and we are so lucky to have him......

A friend of ours sent me an email yesterday stating please do me a favour this year. Keep your chin up and DONT EVER GIVE UP HOPE!!!!! Ally was a match for a reason.....Hope is what I have chosen to hold onto..He said good things happen in 3's and the first of the 3 was Ally being a match, now we are waiting for the other 2.....

Tobogganing Second Attempt

2009-01-19T20:04:00.000-08:00

Ok, so yesterday was a better day at the hill it was only - 4 and we got in 10 runs...I have lots of pictures, just have not had the time to upload them.
Back to the hospital tomorrow for some pre tests before transplant...
Ryan is still up (it is now 11pm) so he will surely be tired in the morning...
He can not eat after 7:30 and we have to hit the road at 6:30 so we will be up early to start the day...hopefully platelets are holding and we will not have to have a transfusion tomorrow...fingers crossed...

Got to get this little monkey to bed...will post tomorrow once we are home .

Tobogganing

2009-01-17T14:18:00.000-08:00

I am still amazed at the turn out from the blood drive...wow....thankyou to everyone who came out, to donate, donate there time, and support us through Ryan's Journey...

Last week we decided to get all the kids together and go tobogganing.. thinking the weather would be nice. Nice, -18 is not nice, it is really cold, but we had promised the kids so off we went..

We did about 3 runs down the hill and got back in the car and came home, we did however get some pictures.
Ryan was the only one who said please can we stay, I don't want to leave... I told him we would come back during the week when it was a bit warmer and he said but mommy it will be spring and all the snow will be melted..

He is doing great and we are enjoying our last 2 weeks before our tenative transplant date...
Dave and I are struggling, as we watch Ryan and realize that we have no idea what the future hold, only that we have to stay positive for our family.

Blood Doner Clinic in Ryan's Honor

2009-01-16T12:49:00.000-08:00

It was a success...

142 pints of blood received, which translates to 426 people who could be saved.
1 unit of blood is broken up into 3 categories....platelets, plasma and red cells.
We had 50 new doners, so that is wonderful..from what our representative from Canadian blood services told us it is the largest new doners she has ever seen in one clinic....I encourage everyone to keep donating if you can as I did it for the first time and it felt great....I know that I am going to continue to do it for as long as I can....

Signing off for now.

Transplant consult.

2009-01-15T19:01:00.001-08:00

Today was tough...alot of information ...things you never want to hear...
Looks like we are going in to hospital Jan 26th all being well and should be there for about 3 months...give or take a little...that was a shock we thought 6 weeks.

Ally had a hard time having her blood taken for some extra test needed.
Ryan as always talked to everyone and full of energy....glad to see as I know it will not last as the Dr's have told us he will become very ill once in transplant and that it will be a rough for about 3-4 weeks....so we are preparing for this...

Next 2 weeks, trying to make sure Ryan has lots of fun and enjoys his time as once we are admitted he will not see outside until the next season hits..

Will update soon

2009-01-14T11:46:00.000-08:00

Hi Everyone,

We are back at sick kids tomorrow to do follow-up blood test to ensure Ryan platelets are stable. Tomorrow is also the day we find out exactly what to expect at transplant, what will happen to Ryan, they say it will be intense so we are anxious today, anticipating what we will hear tomorrow.
Ally has to come to this appointment for some blood work as well and an examination before transplant... What an amazing thing for her to be doing and she does not even understand that she has the ability to save her brothers life...what a story this will be one day, when she is old enough to understand.

Will keep you all posted..