Monday, May 25, 2009

May 25th - Day 108 200/200

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

Wednesday, May 20, 2009

May 20th - Day + 104

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.

Saturday, May 16, 2009

May 16th - Day +100

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.

Sunday, May 10, 2009

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

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.

Monday, May 4, 2009

May 4th -Day + 87

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.