Saga continues… Preparation time 

Since the last time I’ve updated about Nathan there has been so much going on…

We went away for a week to give Nathan a much needed repreive, he needed this desperately as his world spins outta control amd he’s watching all his friends and life move forward his seems to be in a terrible repeating cycle of fighting cancer or some other element from cancer. Although the week away was fun it was also an eye opener and a reality checker for us all particularly Nathan; the calm before the storm one could say.

When we came back it was immediate appointments, one that was for fun, Nathan was permitted to play in his sled hockey playoffs with his team the DE Sled Snipers, they didn’t make the championship but had 2 very great games trying and then onto the Udance for B+ where he was proudly and sadly reognized as a childhood cancer survivor and a repeat fighter going back into his wat with a new diagnosis, a secondary cancer cased by 2 of his prior chemos he needed to dight the last 2 battles;  I  mention the mixed otion above because although such a great defeat beating cancer 2x it still sucks that our children have to endure such aggressive treatments to do it with multitudes od side effects which Nathan has experienced many of, hence the sad end of it all and then you have the memories of the friends you made and loved that are not there to celebrate with you. The  B + Foundation is amazing in all they do for our children across the country, Nathan has grown pretty close to them I fell, although can’t make every event they are close on our hearts and always on our minds, they offered Nathan a.special opportunity to meet a Major in the Army, who happens to be a family member, with Nathans love for the military this was a very exciting afternoon thay followed after some pretty intense testing preparing for transplant. Thank you Joe for arranging that.  <3

In the last weeks building up to now, Nathan has went through a lot of tests preparing for his bone marrow transplant, of which his Dad will be his donor, they will have to do a hyplodidentical transplant as time for Nathan is of the essence, so as you can imagine now have 2 outta 3 of my favorite men in my life going through this process is exausting.for mentally, his Dad will need to provide a large quantity of marrow in which they will do actual aspirations to get, Nathan is in need of a full marrow transplant and as shared previously there are no matches for him across the world, his case is very rare for many reasons  and as it keeps going, becomes more difficult. Nathans translant team, his oncologist and ortho and many Drs across the country are working very diligently to do everything theu can to give Nathan the best possible outcome but as we know Nathans organs have been damaged from prior chemo treatments and are not 100%. The tests that have been run do show just that there has been hardship on his organs and they are not 100%, but the Drs feel good about his high dose chemo prep for the transplant of course nothing is ever garuanteed so we desperately hope and pray for the best, again picking his path of life This last year and a half his oncologist has been watching “spots” that appeared on his scans for any change, that can take time even years of its gonna happen so they have to make sure they’re on that if it happens,  one of his tests for prep was another CT and was right in his 3mos schedule from the last, and of course another curve ball; there’s a new spot in Nathans lung since the last test 3 mos ago, this spot cannot be dx exactly  because Nathan would need a biopsy which would mean another thoroctomy and thats not a good idea in Nathans health state with the leukemia and no time to wait 3mos for another CT for change in size. This new spot can either be his osteosarcoma relasping (which is a high risk in this process) or infection which neither are very good news but we need to move forward with the unknown to give Nathan any chance in beating any of this. 

My family is gearing up to enter the stages of a bone marrow transplant, stress is high, nerves are wracked and as maybe you can imagine none of us are truly ready to do this particularly Nathan…

 I ask for prayers for my family as this will be a difficult battle and time for us all particularly our warrior; it will be like no other he’s been through.

Thank you 

God Bless

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Just a lil update…

Good morning wanted to touch base with everyone a little update on our boy…Nathan is bouncing back from the infusion pretty well he is feeling very fatigued from ot but does his best to push that aside and move on,  his stomach has been very difficult to please through all this as from going through all the past high dose chemo treatments and organ issues, his stomach was the first to actually show the hardship moving forward but wr are working hard everyday as keeping him healthy is extremely important going into transplant. Nathan has fell behind on his school work pretty bad now as he truly just lost all incentive anyone knowing Nathan knows thats very unlike him and me just as guilty having no desire to enter that battle when my son is in the hardest battle of his life;  for life. I crave happy days, many smiles, snuggles and making great memories; I’ve kinda come to the conclusion at this point there’ll be time for school work after this fight has been won and he knows as well he’ll have to make them up and anyone knowing me, knows I don’t set school work aside lightly im a very strong advacate to strive to succeed but he’s striving in another way right now so it will be what it will be.

 Nathan has a hard difficult battle ahead of him soon and he will be faced with life challenges again but these will be a tad different, i have to utmost confidence im him and faith that he will kick this as he has done 2x prior but to deny the fact that everything his young body has already been through and harm all the other high dose chemos have already caused done scare the hell outta me would be wrong; because it absolutely does and he truly has no control over that or it would be a no brainer WIN! 

Nathan has an amazing support system around him this time like no other he’s had before and that would be his peers; the kids on his hockey team and at his school have completely wrapped themselves around our boy and it just brings me to tears to feel this and the delight Nathan has feeling the love and support, the parents of the team/school and staff at school have just swept us off out feet with love and support and it is amazing. We cannot thank them all enough for everything. 

Thank you everyone for all the great words of encouragement, love, thoughts,  and prayers…

God Bless!

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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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