March 25th - Day + 47

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