Dates like these are and will be embedded in our minds forever, they never leave they just hang around; mind you some of these dates are ones to be celebrated then others are far from that. This date in particular was a bittersweet date for us, Nathan didn’t have a full match donor and as a last resort Dad had to step in as a partial match, a HAPLO transplant they call it, a risky transplant with a 50/50 chance; we knew that but options were not there for our son, this was ultimately his best chance for survival and beating this 2nd cancer. Nathan did great with the transplant and it was a huge success with 100% donor engraftment and although we knew it would be a long road I can honestly tell you no one expected to be facing this day without our amazing, beautiful, and brave son.
Sadly the cancer was too aggressive and came back with a vengeance, this mind you after the Dr.s set off “a nuclear bomb” inside our son. When your fighting a beast like this you give it everything you possibly can and push forward fighting everyday, hour, minute, and second; and that what each and every one of us did including his treating Drs.
Today I set aside time to be very thankful we had the opportunity we had to give this possibility to Nathan, a second chance at life or maybe a 3rd, or 4th; honestly he’d been through so much but something Nathan did through it all that we fall back on all the time is and this with knowing he was fighting for his life, to survive time and time again over and over was he lived. Nathan took every opportunity to “LIVE” to succeed, learn, and move forward from helping others to doing things Nathan wanted to do, hiking, sports, laughing, pranking, and learning; he loved to learn. So this day I will look back with excitement, that we had the opportunity but also sorrow because he’s not here to celebrate his day, his 2nd birthday’s anniversary… I always wanted an April baby and I got one even if it was for a short time… I got one <3 YOU!!! #forever16 #foreverwithus
It’s not fair to you or any other child and family having to go through this, childhood cancer is a relentless disease and what it steals form the child is something that can never be regained back, and what childhood cancer stole from your friends and us, your family; your parents and your older brother is absolutely devastating and cruel. You left us for a better place, to gain a new body and become whole again. I do not consider this loosing to cancer I consider this as you winning eternal freedom and glory; although we suffer and hurt deeply from your loss, I find a piece of comfort knowing that your not suffering and that you didn’t. What you didn’t have a chance to learn as didn’t many others either is, Thursday night Jan. 4th I spoke with your Dr. and learned from your BMB that you had been diagnosed with full t-AML, a third cancer that again had no treatment for you but plan C and that was to only calm it from exploding throughout your body to help ease things, but t-AML after going through osteosarcoma 2x and t-MDS 2x with a BMT would have been unforgiving, and for that I am grateful God spared you from all that but non the less I, WE ALL miss you horribly, every second, minute, and hour of every day.
Today February 27, 2018 I will celebrate your birthday as I know you would want, this is the day God gave you to me, although for a short time, it was a time of much joy and beautiful memories; a time I’ll/we’ll never forget, a time yet again God answered my prayers, a prayer for another child. I couldn’t have done all this without God by my side and many will wonder how I can feel that way with all you went through and then loosing you, but if many knew the truth that I was to have no more children when I did have you they may understand a bit better what a true miracle you were from the very beginning. I will/am shed many tears and many will flow like the many falls we hiked to, but I know in my heart you are free and in the land of the unimaginable, whole, not sick and complete again; you are alive in my heart and mind and with me in everything I do. I can feel the peace you have at last and all your dreams and desires to make a difference and be there for other children and families, it will all continue to get carried on, you created a legacy Nathan and I promise you, everything you went through and endured will not be in vein; there are many things to be learned from whether it be medically, personally, humanity, and/or just life; many will learn and grow from you as a person, there will forever be “Nathans Story”.
Forever 16, I love you my son… We WILL be together again <3
I will Never Give UP ! #13 #RIPmyultimatewarrior
REST IN PEACE MY BEAUTIFUL AMAZING SON…
Nathan is an amazing young man who always no matter what the situation always found the good in everyone. Almost 17yrs ago we were gifted the amazing privilege to be parents to such an invigorating and inspiring child, from day one he made his presence known to those around him. Nathan fought many hurdles in life, but with every hurdle he always found a silver lining somewhere; somehow.
Nov. 18, 2010 Nathan started his battle with cancer and fought tirelessly through everything that was dealt to him, little did we know that Nathan would go on to fight cancer three more time and being diagnosed all in total with 3 different types of cancer. At the time of Nathan’s second battle he knew he needed to make a difference and founded Nathan’s Story; a non-profit organization for children fighting cancer and he focused on everyone else but himself even through his own times of difficulties.
Nathan was a true gift to us all from God and while his time with us here, his impact was strong, Nathan is a gift that will forever keep on giving. We are so very proud we were chosen to be his parents, and although we are devastated and hurting deeply we understand that God called Nathan home. You hear many times that God don’t give you more than you can handle but I can honestly tell you God did not give our amazing son cancer or cause all his distress but I can absolutely tell you, that if you let him, God will help you though it, we had to turn it all over years ago and ride solely on our faith.
We thank everyone who has stood by our family, especially Nathan and held our son in constant prayers and always offering great words of encouragement.
Nathan went home to be with the Lord Tuesday night at 10:45pm
Nathan’s last hurrah… he did it his way- he won and now he is free…
FLY HIGH MY SWEET BABE…WE WILL BE TOGEATHER AGAIN
Please keep my family in thoughts and prayers…
#myultimatewarriorx4 #refusetoloose #kickincancer#childhoodcacnersux Nathans Story
— feeling devastated with Nathan Silpath and 3 others.
Just a quick note…
Nathan made it home yesterday from the hospital as you can see his fan club was very excited to see him. This week we are hoping to see some sign that the treatment had an effect as of now Nathan is transfusion dependant for platelets and red cells, the treatment of course added some hardship to his counts but there were no other options but to try. Nathan will be enjoying his good days to the max as much as he can please keep in prayers for control of diseas and a treatment that will offer a better opportunity for a cure. Nathan is very rare and unique on how he responds to medications and different situations so we are praying he continues to stay rare and unique and beats this t-MDS/leukemia, he jas a tremendous fight on his hands and hes ready to stand up to ot and kick its ass he just needs the right treatment to come along.
We thank you all for keeping our family toght in prayers.
Nathas Mom, Dad, and Big Bro
Novenber 24, 2017
Nathan had some great months in between my last update, he got back on the ice for Sled hockey, Dr pulled his line so he could attend classes with his friends; all was going well, slow but well as it should be for a now 16 year old who has battled cancer for 7 years/3 times and 2 different types of cancers; one would have thought that was the way it should happen, after all that including a Haplo BMT, and a successful one at that with 100% donor(Dad) cells, you’d think whewww it’s over, road to recovery; nice and easy does it and let that kiddo live some life as he should…
Not how it happens in the real world, the world of childhood cancer tends to throw more curve balls then a game of baseball. Nathan’s labs fell pretty suddenly 3 weeks, oppps now 4 weeks ago and naturally everything was going to plan with him and his Haplo, no one expected a relapse; Nathan had all the indicators of no relapse except the labs, he has all donor cells, active GvHD of several forms, and the last BMB there was 0 blasts seen; so as it went Nathan’s labs were not making a come back, so of course a BMB was scheduled and as it would turn out…
Nathan’s t-MDS/Leukemia has made itself known again…
As we looked at our 7 year anniversary in all this, original admission/dx Nov 18, 2010 and Nathan receiving his very first dose chemo on Nov 25, 2010 (was Thanksgiving Day then) we were hearing those words again. words no one, not anyone should have to hear one time let alone now for the 4th “YOUR SON HAS CANCER” heartbroken, devastated, and NUMB is just a few feelings you have when you hear those words, some get angry, I honestly just don’t have the energy right now for anger nor much else for that matter right now.
Nathan’s situation is rare and unique, of course it couldn’t just be a easy fix, it’s very complicated, we are waiting for test result that are still out on the marrow right now with hopes that he don’t have all the markers he had prior to complicate things even more, there’s not really a treatment out there for Nathan, the transplant was his chance for a cure, but unfortunately the chemo in the process didn’t work well enough and sleeper cells were able to hide away. Nathan is not fully recovered from the transplant yet so his marrow is still in a weak state, which may cause some difficulties. We don’t have a plan of action yet as said above we need to get all the results back from his biopsies first…
I’ve written this post and posted/removed it many times in these past few days, but it’s just not changing the fact that Nathan, more then any other time is truly in the fight for his life. I’m asking you to please keep Nathan in prayers, he needs a miracle and I have to say I do believe in Miracles…
Thank you so much and God Bless!!!!
Nathan’s Mom, Dad and Brother
So it’s been almost a year since we felt that horrible gut punch of a feeling that something was wrong again and in that time what Nathan and my family has endured has been continuous… BUT here we are at 196 days POST transplant almost our 200 day mark (10/21/2017) and there really hasn’t been a change in Nathan to be honest with you, the Dr’s pulled his lines out at the beginning of August to give him quality of life to thrive as much as he can without the line risks tagging along. Nathan was at his end wits just drowning in his own world not being able to do anything at all and with sled Hockey season nearing the Dr knew what her patient needed and that was to get back on that ice and thrive. Sled hockey has given so much back to Nathan and it’s a way out, a release for him in his world of “NOTHING” He was thrilled to be going back but of course that comes with a lot of precautions and labs, and if needed transfusions, all of which Nathan has to be stuck for, besides all his normal sticks, labs, infusions, and whatever else comes down the road. We take one day at a time and enjoy everything we can as we honestly don’t know what the next day or week may bring to our family. Nathan has been having a lot of difficulties with weight (he’s lost a lot because his lack of stomach function ), GVHD, neuropathy, walking and with a “drop foot” situation, so of course you all know what that means…back to MORE APPOINTMENTS AND DRs, everyone’s favorite topic….NOT!!!! Where we are now?? Nathan is waiting on a new foot brace to help him walk without the drop foot happening, which is very necessary because as that happen to be on his limb salvage leg, he cannot flex at the knee making it extremely hard for him to follow through with a step causing him to be a very high fall risk, and we’ve been there before and that was no fun. We also have neurology set up to see what they think, as the orthopedic feels there’s multiple things happening, not just one that it appears and the two are of separate entities…the neuropathy being caused by treatments and no explanation for the drop foot yet.
Nathan’s labs continue to be the same for the most part as they’ve been for some time, his outter labs (CBCs) continue to hang in there jumping up and down, but that’s can be a normal thing depending on his day, his inner labs (Ts and Bs) from the transplant don’t seem to be budging any and he needs those to grow to start developing an immune system again, as well as redoing ALL his immunizations since the transplant wiped them all out, so we very cautiously move forward with life all while still being on his transplant meds.
Nathan was permitted to attend his classes, as they are homeschooling classes with minimal kids in the class; his school and peers have been fantastic and very supportive with considering his circumstances, they have above and beyond to accommodate, but the flu season is arriving and I cannot deny getting very nervous about this while situation, having to pull Nathan back will be very upsetting to him; Nathan has not attended a whole year of school since 3rd grade in school, the year before his original diagnosis, so as a kiddo that loves school, being all home bound and home schooled(home completely) you can imagine what it means to him to be allowed back in classes.
That’s the quick update for Nathan where things are to sum it up…in limbo…he’s exhausted both mentally and physically but continues to push back at cancer with a lot of determination, he refuses to let it beat him, and Thank the Lord for that!
We thank you all for continued prayers and positive thoughts as we push steadily through this battle.
#myultimatewarriorx3 #refusetoloose #kickincancer
** ALL PHOTOS, VIDEOS, AND ETC. ARE PROPERTY OF NATHAN’S STORY INC. MAY NOT BE DUPLICATED OR USED WITHOUT PERMISSION OF NATHAN’S STORY INC. PERMISSION WITH THE EXCEPTION OF SHARING THE STORY AS WHOLE AS SHARED ABOVE …IN DOING SO CAN BRING LEGAL ACTION
Childhood cancer…it’s like no other illness, disease, or diagnosis you’ll ever receive…you hear all the things cancer CANNOT DO but let’s be realistic, how about what it CAN DO and it will do to many who try so hard to not … Continue reading