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

Facebooktwittergoogle_plusredditpinterestlinkedinmail

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

Facebooktwittergoogle_plusredditpinterestlinkedinmail

1st POST TRANSPLANT BMB RESULTS

Image

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

 

 

Facebooktwittergoogle_plusredditpinterestlinkedinmail

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!!!!

Facebooktwittergoogle_plusredditpinterestlinkedinmail

LAP 3 – MDS (premature leukemia)

After a very long month of not feeling well and many concerns with very low blood counts, we sadly share that Nathan has a type of leukemia… MDS is a type of leukemia that is considered immature cells, Nathan’s treatment will basically consist of the same treatment though and he has a much better chance of kicking it’s butt; the treatment plan will consist of very intense chemo administered over days and then into the transplant process. Time is VERY CRUCIAL for Nathan with this, if things take too long, Nathan’s MDS cells can and will turn into full blown AML and that will make a difference in treatment and hardship through the fight. This diagnosis has come from his treatments needed for his osteosarcoma, his chemo’s; that is a risk taken to fight cancer and many other things that involve breaking down the bodies defenses.
We’ve talked to Nathan’s Dr’s and are confident the plan is a good one and gives Nathan a great chance of kicking cancers ass again. The team is close to Nathan already knows a lot about him and that will help him along the way.
Nathan is aware and as of now is handling it pretty well, he is scared, concerned, and very nervous, BUT there is a light at the end of his tunnel still and that hope alone will give him strength. Nathan has been included in all of this and kinda had a feeling it was going in this direction so he sorta expected it when we talked. Nathan has just entered into a new school this year and has truly enjoyed the experience and had made some great friends, he naturally won’t be back the rest of the year but the connection continues and is fantastic for him, as the last 2 battles he’s been through he really has not had “friend” support, so that alone will be a great benefit to him as well.

Nathan has been fighting for just over 6 yrs now between his original diagnosis of osteosarcoma; fighting it twice – to all the surgeries and complications. He’s had tons of chemo, many surgeries, side effects and this just tops it all; his treatment has made him sick: AGAIN. What do you do when your faced with a decision at the time look at the risks in the future or treat and deal with the here and the now…you treat and deal with the here and the now or you have no future to worry about. We and Nathan have no regrets of his treatment options, we are hurt, frustrated, scared and any and all you can imagine and more BUT he’s here, he may be going back into the fight but he’s here to fight and determined to kick butt; AGAIN!!

So many ask what can we do/how can we help…you can help by keeping Nathan and my family in prayers please and you can make a great difference by registering to be a match for marrow donors at:

BE THE MATCH

All it takes is a cheek swab to get in and a little information about yourself.

Please keep Nathan and my family lifted up in prayers…we will conquer but won’t be without a challenge!

Thank you so very much…

God Bless,

Kim

Facebooktwittergoogle_plusredditpinterestlinkedinmail