Another date… Happy RE-Birthday Nathan…

Dates like these are and will be embedded in our minds forever, they never leave they 20170406_212513just 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 DSC_0061with 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 to20170227_141421 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

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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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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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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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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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