Dates of Distress…

There are many dates we are just geared to remember in our lives automatically from childhood into adulthood: birthdays, anniversary’s, holidays, and others that may play a role in our everyday lives…

WE have dates too just like everyone else, but there are additional dates plugged into our brains, ones we don’t want to remember, ones that bring heartache, heartbreak and many times devastation to our lives…These are dates and times of our child’s diagnosis with childhood cancer, surgeries, start/end of chemo’s, and bad news; the list goes on, dates we should not ever have to hear. You try very hard to get past these days as the calendar reaches them, you tell yourself this year will be different: this day we will make it matter for other reasons/happier ones, you try to replace bad news/feelings with great memories and positives news…you can’t; you just can’t replace these days as if they never existed, because they are a part of you, your family, your heart, and your life. These date are dates that no one should ever have to have embedded in their minds, no one should have to look at that calendar and dread what tomorrow will bring because they were told however long ago it was, their child has cancer, time is limited, no more we can do, and again the list goes on and on. Too many parents are hearing these words too many times; one bad piece of news after another…IT NEEDS TO CHANGE!!!
Today on September 27, 2012 we stopped Nathan’s chemo, we stopped his treatments because his treatments were and had caused so much damage to his organs that the next one could be the one proven to shut anyone of if not more then one, shut them down, them? His organs! We had to choose his path that day and decide if we were going to continue to fight his cancer or try to save his organs now…how do you as a parent, not educated n this world make this decision; you have to weigh it all in and decide on the here and the now; it’s like using the scale system to decide your child’s life and these are decisions the Dr.s cannot make for you, just provide you with information to help you along the way. we decided to try and save his organs; to try and maybe prevent failure and need to transplant, we won’t really ever know if we’ve succeeded till we get there because it could happen at any time now in his life, his organs are damaged that’s a definite but what does that mean for him? It means you go everyday just praying you made the right decision. Its dates like these I talk about above, dates that you should not have to hear when you are enjoying your child grow. This is a date that will as well as many other forever be engraved into my mind, not for a lack of trying to erase it, you cannot; it don’t work like that. Just when you thought it may be gone you have to explain his last day of chemo to someone and that he didn’t finish his treatment plan and why he didn’t finish…
Oh and let’s not forget he’s sitting right there next t you listening-observing your every move and taking in every word you say, they understand far more then you give them credit for; for this is how they grew up listening to these discussions and terminology around them…IT’S NOT RIGHT!!! So many times more then not I hear the question how long has he been off treatment? I reply with the correct time and I hear excitement, yes that’s great I am excited but for Nathan there has been a game changer in there that many do not know or understand anything about…This day 4 years ago changed many things for Nathan; everyday is precious for us because we truly do not know what tomorrow will bring, but yet we have to raise him in a way that he’s normal; when all we want to do is just celebrate everyday that he’s ok and nothing is going on. You just can’t and usually don’t explain that to everyone…that bittersweet day of “no-more chemo” and “organ(s) failure- high risk” you hear phrases like it’s not “IF” for your son now it’s “WHEN“…WHAT??!! yes you hear these words, you deal with changes along the way that only make you wanna celebrate everyday because you just don’t know what’s lurking around the next corner…

These are dates you just can’t get past…those dreaded, embedded dates!

Childhood cancer knows no boundaries and treatments are very old and were created for adults…help make that difference in the way our children get treated while fighting childhood cancer(S)… SHOW YOU CARE BE AWARE!!!!

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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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