10 days to 100

90 Days today! Seems like time has been dragging on and at the same time speeding by like a jet. Sebastian is a rockstar and has been doing awesome! We found out 3 days ago that his body is finally making fighter T-cells, and they are 84% donor cells. This is a good thing, and they should eventually get to 100%. We started weaning his medication (Cyclosporin), which suppresses his immune system making those fighter cells 'lazy' so they won't attack him. With the wean there is potential for graft vs. host disease (GVHD) to rear up, so we are on high alert for any rashes or symptoms showing he could be rejecting the donor or the donor rejecting him. We also learned his blood type changed from A- to O-! Neat. 

This week was the first week we only had to go in to the out-patient clinic once! We have been regulars there lately, heading in at least twice a week to be sure his kidney's were ok and getting fluid boluses when his blood electrolytes (lytes the docs call them) remained high. With the wean of the Cyclosporin we should see less strain on his kidneys and thus a lower creatinine, urea, and potassium. With these lytes balancing out, we can also drop off of giving Kayexalate for his high potassium and we shouldn't need to pump him full of so much water meaning the NG tube may finally come out! Hallelujah! He may start eating foods again.

Next Tuesday (day +95) we go in for our weekly clinic visit, and we have our first bone marrow biopsy post transplant to check the bone marrow for a few things. We want to see if the donor marrow is 100% at the source, and also check for any leukemia cells. Bash will also have a lumbar puncture again to check for leukemia cells in his spinal fluid as they like to hide in there. He will be put under anesthesia for these tests and because he is over a year old now we can do them in the day treatment room instead of going all the way up to day surgery which is much less timely. He wont be allowed to eat anything after midnight and can only have water or clear fluids until 6am - wish me luck on that one as he still wakes 2-3 times in the night for a bottle! 

His day +100 falls on October 15th (coincidentally my mom's bday) and we can stop some of his medications! He will continue to wean with Cyclosporin as long as there is no evidence of GVHD. He can drop to twice a day Acyclovir which he currently needs 4 times a day. We can stop fluconazole completely. If his broviac line is removed (there are plans to remove ASAP as one of the lumens is still blocked) then we can stop giving his once a day needle of enoxaparin. If that line comes out he can have normal baths and go swimming again! We wont need to wrap him up in saran wrap to keep the line from getting wet! He will need to have blood drawn to check it still and the nurses will do this peripherally in his arm with a needle each time, which I can't see him being very happy about, but hey baths!!!

Some big days ahead here. Thoughts, positivity, prayers, and love are all appreciated - it has got us though so much already. I am nervous, terrified really, yet excited and happy. Look how far we have come!