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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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…

THESE ARE THE TEARS, FEARS, AND THE BROKEN HEARTS OF OUR CHILDREN FIGHTING CANCER; THINGS NEED TO CHANGE!

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