After keeping the information of our pending diagnosis within our family and spending our New Year’s Eve at the nurses station in pajamas with complete strangers we decided that we needed to share this news with all of our friends and family… what better way than to put it on Facebook.
[Facebook post] January 1st, 2013. – For anyone who has been waiting to hear from us we just want everyone to know that two days ago Ryan was admitted into the Pediatric ICU at Florida Hospital For Children. Based on the current information it’s a 99% chance that he has a very rare form of leukemia. We are keeping in good spirits and he is doing VERY well right now, he has the best doctors on his case and they are doing every possible thing they can to make this process better. Once we get more information we will share with everyone but in the interim please keep us in your thoughts and prayers. If you could refrain from phone calls, we’re dealing with this one day at a time. Feel free to send Facebook messages and I’ll get back to everyone when I get the chance. Thank you
The outpouring of positive thoughts and prayers was so much more appreciated than we could possibly ever put into words. I’m not sure if it was more the medicine or the prayers but his infection cleared up and his blood counts kept getting better everyday. January 3rd, we finally caved and got a room at the Ronald McDonald house which was amazing just to shower and lay down in a bed without having to think about anything for a few hours. Ryan started sleeping through the night and things kept getting better.
[Facebook post] January 4th, 2013- Today we got moved off of the Pediatric ICU, YAY!!! The doctor has confirmed that Ryan does indeed have the rare juvenile myelomonocytic leukemia but there are still tests that are being processed so we need to wait two more weeks until we can start talking about treatment. Luckily Ryan is doing VERY well. If he keeps his stats where they are all weekend the doctor is going to try to let him come home until the rest of the results come in. So we’re in good spirits and can’t wait to kick this cancer’s butt!
This was the day that the JMML was confirmed and Dr. Hajjar told us that Ryan also has a gene abnormality (monosomy 7) which is another branch within the leukemia. So not only does our sweet little baby have the rarest 1% off all childhood leukemia, his abnormality only affects 11% of these children. We have also been lucky enough to have one of the best pediatric oncologists who is also on the board of governors for St. Jude’s so he personally knows the doctors there as well. Things just kept looking up; our doctor was in contact with the world leading reseacher and oncologist who specialists in JMML (Dr. Loh at UCSF) and we have an extended family member who is a pediatric oncology nurse who actually works with her at UCSF. So she has received his bone marrow and blood to start testing the cytogenetics to get all of the pieces to the puzzle before we start treatment. Those results should get back Thursday January 17th.
[Facebook post] January 8th, 2013 – Due to all of the positive thoughts and prayers we will be going home today! We will be having clinic visits until his blood work comes back from U.C.S.F. around the 17th. He just has to stay healthy until we start treatment so we can stay at home until treatment. Keep praying, we are seeing the results every single day.
Being home has been the best thing for not only Ryan but for us as well. To hear him laugh and play in our own living room is worth more than anything money could buy. Now that things have slowed down some we’ve been able to enjoy the little things. Sorry if any of this has been redundant or doesn’t make much sense, I’m still a little foggy.
We began a very low dose oral chemo at home which has been the most difficult thing in the last few days, mostly the fact that we have to whittle his cells down to nothing to be able to let them grow healthy again. We will have our first visit to Dr. Hajjar’s office where they will be monitoring his white blood cell counts and other blood function twice a week. So far it looks like we’ll be doing his bone marrow transplant in St. Petersberg at All Children’s but we have no idea when but they have started looking in the transplant database for a match. But he just woke up so I’ll fill everyone in again once we get some more information.
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