Tuesday, September 1, 2009

September 1st Day + 208


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 ...


Saturday, July 25, 2009

July 25th Day + 169


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.

Wednesday, July 8, 2009

July 8th, 2009 Day + 152


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,


Monday, June 15, 2009

June 15th -Day +128


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...


Wednesday, June 10, 2009

June 10th- Day + 123

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,


Tuesday, June 2, 2009

June 1st -Day + 115


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.


Monday, May 25, 2009

May 25th - Day 108 200/200


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