Happy Birthday Nathan: Forever 16

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 con20170227_141421sider 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

HAPPY BIRTHDAY

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COMPLETE HEARTBREAK: Rest in PEACE Nathan T. Silpath Feb. 27, 2001-Jan. 9, 2018

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.

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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

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It Continues On… “ENDLESS”

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

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As the World Turns in the Childhood Cancer Life

nathanSo 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.

God Bless!!!!.

#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

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Nearing 100 days POST TRANSPLANT

Good morning to all,

Today we are just 3 days away from that 100 day mark of post transplant….Well guess what in all honesty and truths, that really don’t seem to make a difference for Nathan, as he had a Haplo bone marrow transplant and things tend to work very differently for these cases; BUT we are excited anyways to be here at this point wanting to celebrate and make it MORE, we will do that but cautiously. The 100 days post transplant is a very special day for so many because that is the estimated time it take for the body to build an immune system and those that follow that schedule can start lifting some of those hardship restrictions and with little baby steps begin to enter back into the real world, as long as everything is going to plan to begin with.

Nathan’s world, we are just beginning to bounce back from the GvHD(Graft vs. Host Disease) and recover from that wicked nasty horrid virus BK w/HC, I do have to say with these last 6 1/2 yrs under our belts of Nathan fighting osteosarcoma the surgeries, chemos, and everything involved, this BK w/HC truly beat my boy down; this virus pushed him to the edge, challenged every bit of this kiddos being, strength, both mentally and physically and damn near pushed him over the edge of things. This experience was one Nathan could have definitely done without, but as he endured all that, the pain, blood, the lack of or should I say NO SLEEP, and oh did I mention the pain? That was severe, pain like no one should ever have to endure ever let alone a kid…imagine passing kidney stones every day all day for a month(yep no fun) and no sleeping to boot because of the whole situation. Yes you read correctly round the clock no end to it 24-7 pain. Medications only to maybe at ease to life but not really because with those meds came side effects which added more pain and more problems, oh yes and then of course more meds to treat those problems and effects; Nathan had to stick it out as there is no treatment for the BK w/HC virus in this state but to treat the symptoms and make sure he don’t bleed out (HC stands for: hemorrhagic cystitis) by monitoring his platelet count carefully, which his Drs did an amazing job with.

…So basically let me sum up; this last month has been an absolute miserable horrid experience for us all. As his mom, of course I was right there for him through this whole process, round the clock helping, comforting and crying right along with him. I cannot say enough how heart wrenching it is to have to stand by and watch your child suffer in any means especially in pain and fear. Calling back and forth with his Dr.s and they too having to sadly express there just was no treatment they could provide just treat the symptoms. There were many opportunities to admit into the hospital with this if it was too much to bear and endure but for Nathan the meds they would administer would cause more issues on top of these, he cannot have many of the meds that most can to relieve the pain and discomforts things like this bring, so he can only have the basics of that world and so with all that into consideration he chose to stay home where he at least had the comforts of home around him, because admitting would not change the situation nor speed up the process to getting better, honestly thinking about it it may have even challenged him more.

So it’s now the night before his 100 day post transplant day, I had to take care of appts. and all, so I got side tracked on the post, today we found out Nathan’s immune test, they test how strong his system is, well, yup they’re very low, what was kinda expected for him at this point still with the Haplo transplant.

I’m gonna hop off this post so i can get it up especially beings it’s a few days old now..

Thank you ALL for all the prayers and great words of encouragement for/to Nathan…God Bless

#ultimatewarroirx3 #kickincancer #cantkeephimdown

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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

 

** 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

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1st POST TRANSPLANT BMB RESULTS

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Nathan had his first bone marrow biopsy post transplant 2 weeks ago and the results are in…these results show where Nathans cancer the t-MDS and the Leukemia stand in his system as of now; there will definitely be MORE biopsies done as time goegraphics-thumbs-220297s but as for today….

NATHAN’S TESTS SHOW….

.

.NO BLOOD CANCER,  

NO: t-MDS or LEUKEMIA….NONE  “0” !!!!!!!

WE CANNOT TELL YOU HOW OVER JOYED WE ARE WITH THIS NEWS, YES A LONG WAYS STILL TO RECOVER AND MORE TESTS TO COME BUT THIS… THIS IS…JUST THE BEGINNING OF GREAT THINGS TO COME <3

THANK YOU ALL WHO CONTINUE TO KEEP NATHAN AND MY FAMILY ON THOUGHTS AND PRAYERS…PLEASE KEEP THEM GOING BECAUSE IT’S NOT A PERMANENT THING YET BUT THE BEGINNING OF THE RIGHT TRACK

<3   #myultimatewarriorx3 #kickincancer #cancersux

 

 

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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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Day +10 Happy Easter in more ways then one

We are in day +10 now meaning it’s 10 days into transplant, Nathan has no doubtedly had some struggles through these days between transplant fevers from the type of transplant he had to getting an ND feeding tube to help during days of struggling to eat and of course ulcers in his throat from this process then onto loosing his hair for the third time round in his life, ALL of which are not any life a kid wants to endure as I’m sure you can imagine. Nathan has definitely had some very down days , this process completely sux and so does being held up in the hospital in a room during these beautiful days and times that he should be blossoming himself as  a 16yr old. 

These past 4 days Nathan has been having a rash on and off, the Drs have been watching it carefully as when the cells atart to graft the recipient will get whats called a grafting rash, kinda like a flushing all over him but Nathan dont want to seems to go with the norm so hes been getting it on amd off, while everyone is sitting on the sidelines trying to figure out if thats in fact what it is. Nathan is on round the clock benadryl so the thought is that may be helping with the inflammation process  (grafting rash). As it would have it today is what I’ve been referring to double digit day, it’s day +10 and so 9t has proven to definitely be a double digit day, I just received his labs AND WE HAVE from a “0” ANC to A “20” ANC (DOUBLE DIGIT) his cell count has risen and what a perfect day for this; EASTER DAY!  The cell count rising means grafting is taking place in Nathan, my baby is on his way to beating this. The process he will/can go through can still bring it’s very own complications; high fevers, graft vs. host disease, and much fatigue and discomfort, so as we celebrate the rising of his cell count and progress we still will be on eggshells so to speak, watching for side effects that could prove some very difficult days for Nathan.

 So please as Nathan goes through this process, please keep him close in prayers…Thank you ALL very much !!! 

God Bless and Happy Easter 

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