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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WE have a timeline and a DONOR

 

It has been very busy since I last updated for Nathan and my family…

Nathan had completed his first round of “maintenance chemo” and did rather well considering it all, with mild chemo effects from what we’re use to, thankful for that most definitely, then he took some time off from treatment to recover only to begin another round with extended chemo from one and adding another treatment to it known as an “antibody” and now recovering from that infusion with an unsure as to using the remainder part of his cocktail. Nathan’s dx is a rare and complicated one yes people get MDS but senior citizens get MDS not children let alone it being a therapy induced dx with markers proving it to be even more rare and aggressive; difference between t-MDS and t-AML is literally a number of blasts in his cells/marrow; his treatments are that of t-AML because unlike the seniors who get this dx naturally and can live with it Nathan’s is not as such and will become full blown t-AML and that my friends is exactly what the Drs are hoping to prevent with his chemo cocktails. Nathan started his 2nd regiment with the injections, 3 at a time of chemo in his “fatty” tissue; yes exactly anyone that knows Nathan he has none of that and that’s just another problem he had is weight issues; needless to say Nathan is a very sore monkey right now black and blue all over but like the warrior he is he held in there and finished up. He then moved onto his infusion with the antibody (Mylotarg, GO); all went well till Nathan was done and about 55 mins later his body decided it didn’t like it and of course he reacted to it; I don’t need to go into all the details of his reaction but will say it wasn’t pleasant, was very scary moment for ALL, but thank God we were in the hospital at the time and the teams where able to counter it safely and Nathan is ok and doing great now. Antibodies are just that; foreign substance fusing through your body looking for what it’s suppose to attack and kill, hence the reaction; it is not uncommon for a reaction tis the reason we had him admitted for it, Nathan has proven all to many times he’s not the common side effect kiddo and we know to take the extra precautions with him, he likes to get those really odd 1 in a million side effects to his meds, hence his second cancer dx.

The Dr changed things around for Nathan so he could celebrate his 16th birthday; yup that’s right I said 16, so many of you have watched our lil boy grow these last 6yrs-4mos; from 9 to 16 and in those years he’s been to hell and back several times and this ride isn’t gonna be any different maybe even more challenging for us all involved. Which brings me to the title of this post “WE have a timeline” Many of you are aware the difficulties we’ve had trying to find a donor for Nathan; there was no one donor match for our boy in the USA so the Drs put him on the international registry and he tagged 3 immediately all of which did not pan out then with much excitement a new donor, new to the registry even, popped up and gave us a lot of hope, we do not know whether or not he was our match we needed but unfortunately there was a problem(don’t know exactly what) but this particular donor could not donate for one year, and that just don’t fit in our timeline…we’ve had a back up plan through this and that’s exactly where we are going to go…When we all typed to check our match with Nathan his Dad came up as a possibility, through more testing and typing his markers are high enough with being 1/2 of Nathan’s biological genetic make-up that we can use him as the donor; so YES I”M SAYING WE HAVE OUR DONOR; the Drs where truly hoping to find that 10/10 match for Nathan but that just didn’t happen in our case…we are extremely excited but also nervous and definitely scared as a bone marrow transplant (BMT) is no easy task for anyone let alone a child whose body and organs have been through the wringer not 1x but 2x with osteosarcoma (bone cancer) and then adding to it, his maintenance chemo’s are taking their toll as well. There will be a lot of testing going on with my family between Nathan having/needing more tests, particularly organs and another bone marrow biopsy (BMB) and his father needing a lot of tests to donate as well..please keep them both close in prayers as they prep for this, as you can expect this adds to the nervousness of the situation; although over joyed/estatic to be able to be his donor, this I can imagine is also some added nervousness/pressure for Dad…I will have 2 of my most cherished hearts going at one time…

Thank you to all for the thoughts and prayers…

God bless!!!!

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Turn of Event’s – Lap 3

Thank you everyone for all your kind words, words of encouragement to Nathan and your prayers…
It has been a very busy week; Nathan was admitted into the hospital late Saturday evening for a fever and bad chills, the concerns with the fever for Nathan where because he very low blood counts, the fever represented a possible infection, this kinda of stay we are very familiar with from the last 2 cancer battles.

Thankfully the blood cultures showed no growth for infection, but the thought is the cancer is the cause of the fevers, as Nathan runs a low grade fever, chills, and gets winded every evening, we need to watch how high the fever gets as with not having an immune system there is always a chance for an infection to find its way.

Through the course of our stay more results came back for Nathan and there are even more concerns: Nathan has a rare diagnosis and on top of that it’s been determined to be aggressive. Nathan’s Dr’s have been in communication with Dr’s across the country consulting, there are many voices going into his treatment to give him the best care they can and chance to kick it’s butt, his specific diagnosis is just not common in children and with it showing it’s aggressive that adds to the complexity as well. The Dr’s have repeated the bone marrow biopsies and also did an LP, along with that LP he received an infusion of chemo through the access, they need to make sure the cancer cells have not matured and entered the spinal fluid. This brought us into the chemo world much sooner then we had anticipated, so of course preparation instead of having time was done quickly. Since the new information has come to light, the Dr’s have had to come up with a new plan to get Nathan to transplant as long as these last marrow biopsies show the t-MDS has not matured.

Nathan is doing the best he can; naturally he has his times of fear, sadness, and concern and others he’s plotting and planning just how to prank his nurses when he is inpatient again and for the transplant stay; that’s our Nathan!

We are home again for now and waiting for news of his test results so we can get this path paved and on the way. Please keep Nathan and my family in your prayers, this is gonna be a very different battle for him and our family to go through but we will do this…

NATHAN IS A FIGHTER; AN ULTIMATE WARRIOR!!!!!
Thank you all and God bless!

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