Wednesday, April 1, 2009

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

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

8 comments:

  1. Bad news before good - that's my way of doing things! Great to read that there are indicators that the fight is starting to go Ryan's way!! Keep up the wonderful work Ryan. Enjoy your visit with your Grandad and Gramma.

    Sue & Dave, Ryan is very gifted to have you both in his corner. Take care of each other!

    Elaine

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  2. I'm with Elain bad news first then the good news always makes it better.
    Ryan is a fighter and he is going to prove to us all. Keep on fighting Ryan we are all right behind you roaring all the way.
    Its a long road ahead but try to take one day at a time.
    I know you will enjoy Grandad and Gramma's visit.
    Sue and Dave you take care of yourselves too. I pass along all my strength to you all.
    Love you guys,
    Tina
    xo

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  3. Run with the good news, next week Allys cells will have taken over, that is what you hold on to, k?

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  4. Dear Sue,
    Wonderful, marvellous news! With this good news, I hope that this next week will be easier and that you will get more sleep.

    You are strong and impressive parents. Ryan is a lucky little boy who will do well because of your love and support of him.
    Sleep well!

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  5. Thanks for all the wonderful comments..
    We are so lucky to have so many people routing for us. It is amazing the things you learn when you are faced with something like this. What is the most important to you, what means the most and I have learnt not to take one minute for granted and to cherish every moment you have...Life is to short and we never know what tomorrow holds.

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  6. You both are amazing parent's with precious children. It's amazing to see how all of you keep each other strong. Family is power, fight hard the whole way. Ryan you will soon have an amazing story of triumph to tell when you're a little bit older.

    Mike & Shannon

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  7. Keep up being positive, only good can come your way....good thoughts and prayers from Arizona

    Becky Tonner

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  8. Praying for all of the Hyland's! Keep fighting Ryan...You will win this fight!
    XO Siobhan

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