Tough Roads (Osteo x2 and t-MDS/Leukemia)

nathanIt’s been some time since an update and I truly apologize to all but it has been pretty rough this last month for Nathan and my time has been few and far between being able to update. So many think because Nathan has had his transplant and is home that all is said and done and everything is fine…it’s not fine; not for Nathan nor anyone else going through anything like this; the days are trying and can be extremely difficult, the side effects, the problems, complications and so on can be trying and relentless, not just for my son but for anyone then add the fact that even know he’s home he’s on isolation; that means the only way he can see anyone inside or out is with a mask, imagine wearing a mask to walk out your front door to say hello to someone and no one really being able to come to visit you…life alone and stuck in time it seems.

Nathan, about a month ago developed a rash on his body and it was a very itchy rash, I know immediately what it was and was not happy at ll to see it with the exception of knowing to see a minor bit of this could be a good thing for Nathan as far as beating this  t-MDS, leukemia; the rash was/is GvHD, Graft vs. host Disease, it’s a rejection rash, something Nathan was at high risk of because of the Haplo transplant and not having the match he truly needed for transplant. Drs prescribed steroid creams along with topical ointments but it just got worse and kept spreading so they had to start Nathan on prednisone to try and get it under control, low dose at first but eventually had to increase it, we started to see it taking effect finally and the GvHD seemed to be responding to this treatment. All’s great right? nope, because what the steroids do for transplant patients can be horrible, I’m not talking the hunger, moods, swelling; I’m talking how they break your system down even more and leave you at the mercy of viral infections and anything else lurking around the the system that wants to come out and rake havoc on you/Nathan…AND that’s exactly what happened; of course!

Nathan began having pain when he would use the bathroom, naturally one would think a UTI, but no it’s not that simple in this world. When your a child you get viruses like all kids do and many you never know you have because at some point every child don’t feel well and then they do and you just don’t know why, well many of those viruses stay in your system like a tag for the body to remember it was there, and it works kinda like an immunity to that virus s you don’t get it again; when your a transplant patient they give you meds to suppress your immune system as to help prevent rejection, those meds are immunosuppressants, hence the reason you need to be on isolation and away from specific things, germs, viruses, molds , and etc. So lets add steroids to that mix, what do steroids do? lower your immune system as well and adds the risks of getting sick and that’s exactly how it went too. When Nathan was younger as many children do he had a virus, that virus along with many tagged in his system so the Drs at least knew it was there to watch for it, anyways the prednisone opened the door for them to come through and one did just that; it’s called the BK poloyoma virus, normally under normal circumstances this would show up and one just doesn’t feel well for a day or two and done, in Nathan’s world it comes back in a different way, it comes back as BKV and usually tags along with it of course HC (Hemorrhagic Cystitis). This is extremely painful and very uncomfortable to endure for anyone let alone a child, a child that’s already been trough hell and back. There is no treatment for this, but to treat the symptoms and ride the course it takes you which is endless days and nights of non stop pain ( won’t go into details, please tap the link and read about it). Want to see a very strong person who has endured so much and done it with amazing attitude and endurance break down and be at the end of their rope?! experience someone going through this, pain meds truly don’t touch this; it’s something you have to just endure; it makes me angry, sad, and every emotion you can imagine runs through you watching your child endure so much and you cannot help them, the fear of him starting to bleed out uncontrollably is real and completely sucks. Nathan can’t have most meds that others can have for pain so that don’t help his situation he can only use certain ones and then the side effects of those on top of whats already a true living hell for anyone especially a kid..I can honestly say his world just suck right now and I’m helpless to it in being able to help him.

Nothing will start getting better until we can get rid of the steroids treating his rejection issue, and that needed to be under control first, and that seems to be where we are at this point, very carefully taking away the prednisone so the body can try to fight the BKV w/HC…this has been the last month for Nathan a living hell, one more thing to endure to survive childhood cancer, it’s been 6 1/2 years of fighting, enduring, and accepting what life keeps dishing out to him; that’s almost half his life now and in the mix of all this he’s working endlessly trying to complete his 10th grade work so he can move onto 11th grade where he absolutely deserves to be…

HATS OFF TO THIS KIDDO… HE JUST KEEPS PUSHING FORWARD REGARDLESS 18618129_10209522195711790_1499877916_o (1)WHAT LIFE KEEPS DISHING OUT TO HIM

Thank you to ALL who continue to keep Nathan in thoughts and prayers…

#myultimatewarriorx3 #kickincancer #cantkeephimdown #nathansstory

 

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Nathan update…

Well it’s been almost a month now since Nathan has come home and it’s long and grueling…Nathan is on full isolation even at home with regular visits to the transplant clinic; meaning still no living and enjoying life like a normal teen should be BUT he’s home and that alone is a relief and we are extremely grateful for. The isolation process remains in effect for 100 days post transplant and Nathan is nearing his 60 day mark next week, we have a ways to go yet.

Nathan is doing well with recovery from his transplant, the transplant was deemed a success as far as the transfer of the donor(his Dad) to recipient, how it has effected the actual cancer we still do not know, there is a BMB scheduled to check in on that. Labs have  maintained well until just recently when he needed a good pump up of Red cells, so that alone is great news; his ANC is fantastic but unlike our situation when Nathan was being treated for osteosarcoma(bone cancer), his ANC (Absolute neutrophil count) numbers after the BMT can be deceiving; in the transplant world it tells us the cells are growing and doing well but as far as his immunity, not the case; he has none due to being on immune compressing medications to help avoid rejection and GvHD (Graft vs. Host disease), something very high risk with a Haplo Transplant; which is what Nathan had due to not being able to find a matched donor.

Nathan is working hard on getting his remainder of school work pumped out so he can continue onto the 11th grade as he should, while anxiously awaiting for some of the restrictions to lift so he can enjoy some fun activities, as he should be.

Thank you everyone for so many wonderful words of encouragement and thoughtful prayers for Nathan and the rest of my family. God Bless!!!!

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A Piece of Home 2016 “Sponsor a Tree”

It is nearing that time of year again, the time where everyone starts preparing for the holidays, whether you celebrate Christmas, Kwanzaa, and Hanukkah(these are just a few of the celebrations that take place). Although in some aspects different they have one thing in common and that’s to be together as a family and usually in the home enjoying the celebration. In the world of childhood cancer or any serious medical world that’s not always the option for those going through the treatments or the hardships, many spend their time of celebration in the hospital’s where they need to be at that time for whatever the reason it may be. Our mission at Nathan’s Story with “A Piece of Home” is to help ease that by bringing some of that home comfort to those in patient.
As many of you can only imagine being in the hospital over the holidays is no fun…now imagine yourself as a child fighting cancer, a new way of life for you and your family that you have just embarked on in the last month. Nathan started his chemo treatments on Thanksgiving day of 2010, what better day we thought to be thankful for a “beginning to and end”. The chemo treatments were three weeks out of four in the hospital as inpatient, he was pulled out of school and taught by the teacher in the hospital and a home teacher the schools sent to our home, when he was there. Nathan and our family spent every holiday in the hospital as in patient either for chemo treatments or fevers/isolation with the exception of Halloween. The staff did everything they could to help make this as joyful and painless as they could but when it all came down to it we were still in the hospital for the holiday’s; childhood cancer seemed determined to take from us those special moments that we as a family cherish.
We at Nathan’s Story C.C.O. wanted to help make it even more special, beings we could look at it from a different perspective then most since we actually were in the situation. We personally came up with the idea of bringing in “A Piece of Home” for the holidays. Our first year and within months of becoming an official 501(c)(3) we raised funds to get the children that would be in the hospital for the holidays their own holiday tree. The trees we chose were specifically chosen with the children in mind and with the help of Nathan himself. The trees are no more then 32-36″ with fiber optic lights, lights that change colors automatically and cascade through the room with soft soothing colors to be able to relax and and enjoy. The children as well as the family truly enjoy the soft glow of the tree and the changing of the lights, it offers a relaxed and peaceful moment.
We reached out to everyone with our “sponsorship program” last year for the first time to help us grow in our mission and make it even more special and there was a response that was truly amazing and helped not only provide the trees but we where able to provide a holiday dinner and gifts for ALL the children including the siblings, we had crafts and just all around a great coming together of everyone around enjoying each others company and conversation; all this on the unit of a hospital.
Won’t you please help us again by “Sponsoring a Tree”…

Sponsorship is $20.00 per tree; you can donate by secure check out below or with check,  Mail to: Nathan’s Story PO Box 213 Galena MD 21635

Thank You…

Nathan’s Story




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**All donations are tax deductible as we are a Federally approved 501c3 non-profit and will provide receipt of donation upon request.

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