Taking “AIM” on Childhood Cancer 4th Annual 3D Archery Tournament

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Thank you to all who made this possible with phenomenal sponsors and with a record turnout, it was most definitely a bittersweet day for many. The weather although a tad chilly was great, everyone had a good time, shot good … Continue reading

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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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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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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Day -1 into Day 0 – aka: Transplant Day

We’ve been through day -1 and day 0 since I last updated…

Long story short… day -1 was a day of rest for Nathan, no chemo’s or anything like that and I managed to get him out into the healing gardens for some great sunshine and fresh air. As the day went you could tell he was nervous about what was to come but we all did pretty good I think keeping him busy with the help of PT and OT and few others his mind was focused on many things.

Nathan had his marrow donation donated by his Dad, since there was no match for Nathan we did a Haplotype bone marrow transplant. This type of transplant gave Nathan the best chance to kick this, there are some extra risks with this type of process but Nathan waited months for a donor and had no luck the Drs found a treatment that yes put Nathans cancer into remission but it was a temporary thing and because of that Nathan went into transplant in the best condition he possibly could. Nathan’s Dad admitted in the OR Thursday morning prepared to donate, the Drs where thrilled with the amount of cells they were able to harvest from Dad; 2 liters of cells via. bone marrow aspiration. This was sent to be processed which took all day to do for several reasons, 1 being quantity and another being they are 2 different blood types. Nathan received his transplant finally at 9:21pm April 6th, it ended at 9:57pm. Nathan did well with the feed but had some issues that were not abnormal right after and later through the night. Nathan’s vitals were very active going from high to low and setting off the bells and whistles all night long BUT they both did GREAT.

Dad is home and recouping and Nathan is waiting for the grafting process to begin. There is still more to his process before he can just let it all happen, Nathan needs to have an IVIG infusion and then back onto more chemo, the IVIG is part of the process but the chemo is because Dad and son are different blood types and they need to wipe out the donated T cells so Nathan can receive better and will lessen the severity of grafts vs. host disease, which everyone is at risk of getting in these cases but Nathan’s case and type of transplant raises his chances.

As I sit and type the update, Nathan is sleeping and has been all day Nathan spiked a fever last night which came down today and then right back up and above. The concern is of course infection, but it is also expected to happen with a transplant (your putting foreign matter into his body and it’s responding). Nathan’s counts are falling now and he’s beginning to have chemo effect with his body as well. All in all though Dr says he’s doing well.

Thank you to everyone for keeping my son and family in constant prayers; this is only the beginning of this process, Nathan has a ways to go yet and the days can get much worse before they get better.

 

Thank you and God Bless!!!!

#myultimatewarriorx3

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