Day +43

Ryan's birthday is tomorrow, we are so excited to celebrate! This weekend will be a lot of little adjustments and monitoring because his counts have been bouncing around. His bloodwork got sent out on Wednesday to check his STR's, hopefully we get the results back today but it probably will not be until next week. I'm going to make a wishlist on Amazon for his birthday if anyone wants to get him gifts. I'll update once we get results. Have a great weekend and welcome to Summer!

Day +37

Time is like a black hole here, you come out of the other side unsure if it has been 15 minutes or 15 days. Everything is going VERY well. Ryan's belly has finally gone back down to almost normal size and his weight is normalizing as well. The rash he had has already cleared up with a little boost in his immuno suppressant. We are now just waiting for his body to start producing enough platelets for us to get discharged. His appetite has gotten better slowly with the abdominal swelling going down. They have started weaning him off of his morphine which has gone well, he has to be at a manageable level to leave. Tomorrow is Father's Day and I am lucky to say that Ryan has the best Dad in the whole world. Have a great weekend everyone!

Day +34

Ryan's had an eventful afternoon. We finally got his drain placed, ND tube put in, and bone marrow aspiration done. They removed about 100cc of the fluid during the insertion. The doctor said that the fluid they drained was clear which is a great sign. Instead of taking it all at once it will be about 100cc every 6 hours until it is back to a level they are comfortable with. We will begin tube feeding some breast milk tomorrow to try and kick start his digestive system again. Once he is having good intake of breast milk and he begins making his own platelets we will be discharged. Fingers crossed. The bone marrow aspiration will take a week for results and they have sent a sample to the specialist in California to help them do research to help find a cause / cure for JMML. Well I need to try to get some sleep now. Keep us in your thoughts!

Day +33

Dan and I went to a job fair so Ryan got a visit from his abuelos so we could get a break together. After another day of delays Ryan's doctors have been trying everything they can think of but he is still retaining a lot of fluid (basically 15% of his body weight) in his abdomen. If his weight and abdominal girth doesn't go down by morning they will be putting in a shunt to drain the excess fluid. We also noticed the other night that he has developed a rash on his scalp / forehead which has spread a little to his face. The rash is graph vs host disease (GVHD) which is the donors cells realizing that Ryan's cells are not theirs, the school of thought is that this minor rash is a good sign which should actually mean that he is less likely to relapse. He is in amazing spirits, just a little uncomfortable. Keep up the prayers, they are working. There are just a lot of hurdles on the track to recovery from transplant.

Day +32

 The bone marrow aspiration is postponed again today. Ryan has about 400 CC's of free fluid floating around in his tummy so he has a giant 59 cm belly right now. They didn't want to put him under anesthesia with the pressure from the fluid so we are trying multiple doses of diuretics to try to flush the fluids out. This is all very normal after the strength of the chemo he received  He is also having some issues making his own platelets so it is looking like we will be inpatient for another week until his appetite improves and he doesn't need to get platelets everyday. We have been so fortunate to have such great medical staff to explain it all and make us a part of their decisions. We should know later today or tomorrow if he is 100% donor cells from a blood sample they had taken on Friday. Our Oncologist is very confident that he is all donor cells but wants to verify that he has shedded his KRAS mutation which can cause future problems. Well looks like I have a minute to nap so I will try to update again tomorrow!

Ryan is 100% donor cells!!!!!!!!! Now they just need to verify with the aspiration that he no longer has the KRAS mutation. Still a long road ahead of us but the good news is always welcome.

Day +30

Busy day. Ryan's counts keep coming up but we had to postpone his bone marrow aspiration today. The doctor that studies JMML is going to get a sample of it so they needed to push to Monday so she can get it fresh. While he is under anesthesia they will be doing an endoscopy to make sure he isn't experiencing graph vs host disease (GVHD). We are seeing his energy level soar but he is still reluctant to eat so he is getting his nutrition from his IV. With any luck his appetite will fire back up in the next few days. Have a great weekend!

Day +26

ANC this morning was 1,700!!! If he keeps this up it looks like we will be discharged next week. What a wild roller coaster. Keep up the prayers!

Day +25

Today Ryan's white blood cell count is 2.05 and his ANC is 1125! This is what we have been waiting for. He has returned to my full force terrorizer. I'm going to start him on PT and OT tomorrow to give myself a break, with any luck he will be walking by the end of the week. As a whole there are clear signs of him engrafting so by the end of the week they will do another bone marrow aspiration to find out what percent of his marrow is his donor's cells. He still hasn't taken his nap today so it's time to fight a losing battle. I will try to update soon with info about his counts.

Day +23