Day +10 Happy Easter in more ways then one

We are in day +10 now meaning it’s 10 days into transplant, Nathan has no doubtedly had some struggles through these days between transplant fevers from the type of transplant he had to getting an ND feeding tube to help during days of struggling to eat and of course ulcers in his throat from this process then onto loosing his hair for the third time round in his life, ALL of which are not any life a kid wants to endure as I’m sure you can imagine. Nathan has definitely had some very down days , this process completely sux and so does being held up in the hospital in a room during these beautiful days and times that he should be blossoming himself as  a 16yr old. 

These past 4 days Nathan has been having a rash on and off, the Drs have been watching it carefully as when the cells atart to graft the recipient will get whats called a grafting rash, kinda like a flushing all over him but Nathan dont want to seems to go with the norm so hes been getting it on amd off, while everyone is sitting on the sidelines trying to figure out if thats in fact what it is. Nathan is on round the clock benadryl so the thought is that may be helping with the inflammation process  (grafting rash). As it would have it today is what I’ve been referring to double digit day, it’s day +10 and so 9t has proven to definitely be a double digit day, I just received his labs AND WE HAVE from a “0” ANC to A “20” ANC (DOUBLE DIGIT) his cell count has risen and what a perfect day for this; EASTER DAY!  The cell count rising means grafting is taking place in Nathan, my baby is on his way to beating this. The process he will/can go through can still bring it’s very own complications; high fevers, graft vs. host disease, and much fatigue and discomfort, so as we celebrate the rising of his cell count and progress we still will be on eggshells so to speak, watching for side effects that could prove some very difficult days for Nathan.

 So please as Nathan goes through this process, please keep him close in prayers…Thank you ALL very much !!! 

God Bless and Happy Easter 

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Day -1 into Day 0 – aka: Transplant Day

We’ve been through day -1 and day 0 since I last updated…

Long story short… day -1 was a day of rest for Nathan, no chemo’s or anything like that and I managed to get him out into the healing gardens for some great sunshine and fresh air. As the day went you could tell he was nervous about what was to come but we all did pretty good I think keeping him busy with the help of PT and OT and few others his mind was focused on many things.

Nathan had his marrow donation donated by his Dad, since there was no match for Nathan we did a Haplotype bone marrow transplant. This type of transplant gave Nathan the best chance to kick this, there are some extra risks with this type of process but Nathan waited months for a donor and had no luck the Drs found a treatment that yes put Nathans cancer into remission but it was a temporary thing and because of that Nathan went into transplant in the best condition he possibly could. Nathan’s Dad admitted in the OR Thursday morning prepared to donate, the Drs where thrilled with the amount of cells they were able to harvest from Dad; 2 liters of cells via. bone marrow aspiration. This was sent to be processed which took all day to do for several reasons, 1 being quantity and another being they are 2 different blood types. Nathan received his transplant finally at 9:21pm April 6th, it ended at 9:57pm. Nathan did well with the feed but had some issues that were not abnormal right after and later through the night. Nathan’s vitals were very active going from high to low and setting off the bells and whistles all night long BUT they both did GREAT.

Dad is home and recouping and Nathan is waiting for the grafting process to begin. There is still more to his process before he can just let it all happen, Nathan needs to have an IVIG infusion and then back onto more chemo, the IVIG is part of the process but the chemo is because Dad and son are different blood types and they need to wipe out the donated T cells so Nathan can receive better and will lessen the severity of grafts vs. host disease, which everyone is at risk of getting in these cases but Nathan’s case and type of transplant raises his chances.

As I sit and type the update, Nathan is sleeping and has been all day Nathan spiked a fever last night which came down today and then right back up and above. The concern is of course infection, but it is also expected to happen with a transplant (your putting foreign matter into his body and it’s responding). Nathan’s counts are falling now and he’s beginning to have chemo effect with his body as well. All in all though Dr says he’s doing well.

Thank you to everyone for keeping my son and family in constant prayers; this is only the beginning of this process, Nathan has a ways to go yet and the days can get much worse before they get better.

 

Thank you and God Bless!!!!

#myultimatewarriorx3

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Pre – Transplant: t-MDS (AML/Leukemia)

Nathan admitted into the hospital directly after surgery for his central lines on Wednesday, there were some complications feeding his lines in, Dr. tried the left side first, where his original lines were placed in 2010, and had no success so moving onto the right side with some complication’s along the way as well, he was able to feed the lines in successfully. Nathan had mild muscle discomfort but with the help of heat packs and a small amount of meds he has almost completely bounced back. Thursday Nathan received his first round of chemo of Bulsaulfan, to begin the bone marrow transplant process, they call these the “minus“ days, leading up to “the” day. Nathan’s received this chemo (Bulsaulfan), every 6hrs, round the clock; he would have it brought in hooked up and it would run for 2hrs, every day for 4 days. During this time he did well, he maintained himself with minimal side effect, nausea and mild fatigue. His central line dressing though is creating havoc as it did before and with this time Nathan’s system being pushed to a greater extreme this is a problem as he needs a sealed and protected site where his central lines exit his chest to prevent infection. His skin has already reacted to the adhesives and it’s creating a contact dermatitis type reaction which we are all being very cautious as as we cannot have it completely breaking down going into transplant on Thursday and the recovery afterwards, so it’s a meeting of the minds to keep it in sync.

Today is day 5 in, (-3) today, Nathan started his second chemo, Cyclophosphamide he will receive this for 2 days at 2hr infusions each along with round the clock medication that called, Mesna; it’s a rescue med to protect his organs from damage due to receiving the Cyclophosphamide chemo. This particular chemo is much stronger and will wipe Nathan out very quickly, and has. It’s been 2 hours since his chemo stopped running and he’s already felt nausea with in ½ hour and much fatigue, he is currently sleeping as I write this.

*Day:  -2

So as life would have it, my update didn’t make it out as planned and we continued into Nathan’s evening with a very sick kiddo into the night and if that wasn’t bad enough for him it triggered a migraine on top of it all, making the vomiting much worse. Today he is feeling much better, thankfully; but again he is hooked up and receiving chemo as I’m re-updating my update.

Nathan is feeling the nervousness of all this especially this second chemo and how he knows it’s going to knock him down and then of course “The transplant” along with the recovery. His spirits are good and he’s determined to kick this, and beat cancers butt and get back to life and everything he loves and enjoys.

Thank you to ALL for so many great words of encouragement and positive thoughts and the many many prayers being said for Nathan and my family… God Bless!

 

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