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…


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

#myultimatewarriorx3 #kickincancer #cantkeephimdown #nathansstory




Broken Hearts and Tears of Children

alex While you see so many children with smiles on their faces there are many more you may not see… These are the children of the childhood cancer world, yes that’s right children get cancer too, and at to high of a rate at that.

Childhood cancer come in many different sub-types, it’s not just one disease…they get all the cancers adults get and some that adults don’t. The bodies of children inside and out are not fully developed yet, so as you can imagine chemo does unbelievable things to our children’s bodies inside and out. We see and hear all about the adult world as it’s discussed and talked about on a regular basis, but what people don’t like to talk about or discuss is children suffering, yes I said suffering, not only are the treatments they receive decades old and made specifically for adults and administered at high doses, but these tiny little humans are trying to grow both mentally and physically and these adult based chemo in high dose forms to try and take a lot of that away from our children, let alone everything else it does…BUT what many-many folks don’t realize again is that these beautiful children fighting to survive and to have somewhat of a decent life afterwards is they do a lot of growing up in the hospital(s) and cannot attend school because of their particular delicate situation(s). The friends and playmates they make are also children in delicate/difficult situations as well. The bonds between these children become very tight, they share moments, stories, dreams and encourage each other through hard times; they are some of the most bravest and strongest people I know. We/they all become one very close tight nit family/community, we share tears, shoulders, struggles, and yes at times we can find laughter.

Nathan has been in this world now for just about 6years and throught these years he has like many of the children met and grown very fond of many of the children that share his delicate life, they may not all share the same diagnosis but that don’t stop them from understanding and bonding. We have met so many families from all walks of life and Nathan being out of school for so long and away from so many has become very close to these children/families he shares so much with and they have filled voids in his life that may not have been created if he was not diagnosed with cancer, they have become his friends, close friends; along the way and in all this he has also had to say “goodnight” to many…Yes there again another world our children who are diagnosed with cancer have to endure that maybe they would not as much if there was a change and a huge difference in how they are treated with cancer… Part of getting the children through recovery is to keep their stress levels at a minimum, you they have toxic chemicals, can’t go to school, cannot be a regular actuve child, lives primarly in a hospital and the list goes on…we are to keep the stress level at a minimum..UM YEAH NOPE! This past week we, the childhood cancer community have lost yet another young life to cancer; this young man battled 3 different types of cancer, being diagnosed lastly with a terminal brain tumor; this young man has been along with us from the start for the most part, Alex was the first we met, that was diagnosed with the same type of cancer as Nathan, osteosarcoma; bone cancer. In our first meeting his words of encouragement he offered not only to Nathan but to me, an adult, were just so uplifting and encouraging that I will never forget that day, all while Nathan was dealing with his wonderful side effects of his steroids he needed to take his chemo, but as it was, Alex paid no mind to that; he said no worries that happens to us all; we all go through it, its part of the course.(unacceptable world for children) All week long I struggled to tell Nathan, as he has his own struggles going on as well and Drs cannot express enough just how imporatan it is to keep his stress at a very minimal very low level…feeling horribly, I decided not to share just yet as Nathan had an event coming up that he was invited to attend as a HERO, a hero: a child fighting, who has fought cancer, anyways he needed this desperately, I found myself extending sympathy and apologies all at once to the mother/a friend of the young man, who was laying her beautiful son to rest the same day. Our day went off beautifully for Nathan, all the while I was just agonizing if I did the right thing, with a very heavy heart and mind I participated in the day along side of my son who was just in his glory with the outcome of his experience, thinking of this young man and his family and all attending his services at the same time; I wept many times through out the day, I wept in pain and in joy, it was a emotional struggle, you see the event was for another little boy who is also fighting cancer and has quite a ways to go yet to be done with his treatments and who will as the parents just found out, spend the rest of his life fearing another diagnosis of another cancer due to a genetic disorder. Nathan understands all too well and too much for being 15, so does all the other children who are put into these situations. This morning as I knew in my heart I could not hold it any longer I explained to Nathan the loss of Alex, the whole week and why I waited…in return my son who understands beceause we’ve been here too many times before, got angry, very angry with emotion and expressed to me that this would not happen if people, those people who could truly do something listened and trey cared enough to do it, angry that there is so little done to help make this NOT happen, so very little known to the general public that CHILDREN GET CANCER TOO and to top it off he just can’t comprehend how little the children mean to the world…