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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Little updates from our week…

1/25/2017…This week Nathan started his maintenance chemo to keep the cancer cells under control, he’s had to report to the oncology clinic every day this week to receive his chemo injections…it ended up that it wasn’t just one Chemo injection a day it’s 3, so far this week he’s received 9 chemo injections with 6 more to go ending on Friday then he starts an oral chemo…These injections have not been a joy at all to him as he already had body aches and these cause bad muscle pain, nausea, fatigue, min. hair effects, and low counts.  After receiving his shots yesterday in his legs he broke out with sight rashes and with bad itching…can I tell ya hes about beat…As a parent who has to watch and stand by this all, convince your child he wants to get up, travel and receive more chemo (injections) that will make him feel worse just sux because neither one of us wants to be doing this BUT you have too :/ It’s draining!!!

1/29/2017…Yesterday, Nathan started a new maintenance chemo after receiving total of 15 chemo injections last week of the first…It appears there has been slight change in his cellular growth but not enough to change his present status, Thank you Lord!!! I cannot express how important it is to keep this controlled for Nathan and his transplant. This new chemo is not a pleasant one either , it is in low dose but that don’t stop the ill junky feelings you get from it at all. Nathan is loosing weight already, not that he can afford it to begin with as he just leveled off from all his unfortunate events last year but the way I understand it is it’s not his fault it’s from his body trying to deal with the cancer, the cancer is in his blood and marrow and with his body trying to respond it’s using all his calories he’s eating so we’ve had to add to his diet with supplements to add more calories, needless to say he’s not thrilled but he has a amazing dietitian who knows how to work with kids in a way they can handle it, as much as it’s possible anyways, then you add his stomach issue he has already to this all and…well nothing, you can’t do anything; you just have to hang on.

~~Summary of this new diagnosis battle/where we are~~

It’s been almost 2mos now of all this going on… To come out with a secondary cancer for my son; a 2x fighter of OS with “spots” in his lungs and it’s caused by the chemo treatments…as of last marrow biopsies he was still t-MDS.

Today was the first time I was going over my sons medical with another medical professional and had to say he has leukemia…this is so un frekin believable I am just sickened, honestly i’m not sure what I am just have that numb feeling about me again… A second cancer caused by his first and second cancer treatments with osteosarcoma… he started on chemo 2wks ago with an infusion through his LP and then onto a maintenance plan to try and control the cell growth trying to keep it in the MDS stage and prevent the t_AML; they where able to track the chemos that caused it to 2 of those that were used in his treatments 1 from his original MAP and 1 from the relapse in his lungs; so of course it can’t just stop there those flags have shown his t-MDS to be very rare and yup it continues…very aggressive! There has been cell growth since all the findings and he gets bone marrow biopsies pretty regularly now to track it.

My family all tested to be a match and our older son was not nor was I but Dad is a good back up donor; they found 3 perfect matched in the National Registry and only 1 has responded to start the process and all are out of the country to boot…He’s getting a big genetic work up to try and at least see if he’s pre-dispositioned for this or if it’s all just another bad deck of cards being delt.

So as we’re signing away for our now 15yr old son to get back into chemo what are we reading??? YES it carries a risk for yet ANOTHER cancer (lymphoma) oh AND it can kick in his OS: oh of course its “RARE” but he has fallen into that 3rd column endlessly, why should we not be really concerned?! GOOD GRIEF!!!!! So until we can get his transplant on schedule we do maintenance chemo’s with hopes to control this damn stuff…My son at age 9 dx with OS relapse at 12 with metastaic bi-lateral lung and now 15 with leukemia(T-MDS)…Silver lining????? it’s not full blown t-AML…things seriously need to change 🙁

Thank you everyone for all your great words of encouragement and prayers, please keep them coming, we need a donor match, a full match to give Nathan the best possible chance of beating this…

Mom <3

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