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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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….

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.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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Pre – Transplant: t-MDS (AML/Leukemia)

Nathan admitted into the hospital directly after surgery for his central lines on Wednesday, there were some complications feeding his lines in, Dr. tried the left side first, where his original lines were placed in 2010, and had no success so moving onto the right side with some complication’s along the way as well, he was able to feed the lines in successfully. Nathan had mild muscle discomfort but with the help of heat packs and a small amount of meds he has almost completely bounced back. Thursday Nathan received his first round of chemo of Bulsaulfan, to begin the bone marrow transplant process, they call these the “minus“ days, leading up to “the” day. Nathan’s received this chemo (Bulsaulfan), every 6hrs, round the clock; he would have it brought in hooked up and it would run for 2hrs, every day for 4 days. During this time he did well, he maintained himself with minimal side effect, nausea and mild fatigue. His central line dressing though is creating havoc as it did before and with this time Nathan’s system being pushed to a greater extreme this is a problem as he needs a sealed and protected site where his central lines exit his chest to prevent infection. His skin has already reacted to the adhesives and it’s creating a contact dermatitis type reaction which we are all being very cautious as as we cannot have it completely breaking down going into transplant on Thursday and the recovery afterwards, so it’s a meeting of the minds to keep it in sync.

Today is day 5 in, (-3) today, Nathan started his second chemo, Cyclophosphamide he will receive this for 2 days at 2hr infusions each along with round the clock medication that called, Mesna; it’s a rescue med to protect his organs from damage due to receiving the Cyclophosphamide chemo. This particular chemo is much stronger and will wipe Nathan out very quickly, and has. It’s been 2 hours since his chemo stopped running and he’s already felt nausea with in ½ hour and much fatigue, he is currently sleeping as I write this.

*Day:  -2

So as life would have it, my update didn’t make it out as planned and we continued into Nathan’s evening with a very sick kiddo into the night and if that wasn’t bad enough for him it triggered a migraine on top of it all, making the vomiting much worse. Today he is feeling much better, thankfully; but again he is hooked up and receiving chemo as I’m re-updating my update.

Nathan is feeling the nervousness of all this especially this second chemo and how he knows it’s going to knock him down and then of course “The transplant” along with the recovery. His spirits are good and he’s determined to kick this, and beat cancers butt and get back to life and everything he loves and enjoys.

Thank you to ALL for so many great words of encouragement and positive thoughts and the many many prayers being said for Nathan and my family… God Bless!

 

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Little updates from our week…

1/25/2017…This week Nathan started his maintenance chemo to keep the cancer cells under control, he’s had to report to the oncology clinic every day this week to receive his chemo injections…it ended up that it wasn’t just one Chemo injection a day it’s 3, so far this week he’s received 9 chemo injections with 6 more to go ending on Friday then he starts an oral chemo…These injections have not been a joy at all to him as he already had body aches and these cause bad muscle pain, nausea, fatigue, min. hair effects, and low counts.  After receiving his shots yesterday in his legs he broke out with sight rashes and with bad itching…can I tell ya hes about beat…As a parent who has to watch and stand by this all, convince your child he wants to get up, travel and receive more chemo (injections) that will make him feel worse just sux because neither one of us wants to be doing this BUT you have too :/ It’s draining!!!

1/29/2017…Yesterday, Nathan started a new maintenance chemo after receiving total of 15 chemo injections last week of the first…It appears there has been slight change in his cellular growth but not enough to change his present status, Thank you Lord!!! I cannot express how important it is to keep this controlled for Nathan and his transplant. This new chemo is not a pleasant one either , it is in low dose but that don’t stop the ill junky feelings you get from it at all. Nathan is loosing weight already, not that he can afford it to begin with as he just leveled off from all his unfortunate events last year but the way I understand it is it’s not his fault it’s from his body trying to deal with the cancer, the cancer is in his blood and marrow and with his body trying to respond it’s using all his calories he’s eating so we’ve had to add to his diet with supplements to add more calories, needless to say he’s not thrilled but he has a amazing dietitian who knows how to work with kids in a way they can handle it, as much as it’s possible anyways, then you add his stomach issue he has already to this all and…well nothing, you can’t do anything; you just have to hang on.

~~Summary of this new diagnosis battle/where we are~~

It’s been almost 2mos now of all this going on… To come out with a secondary cancer for my son; a 2x fighter of OS with “spots” in his lungs and it’s caused by the chemo treatments…as of last marrow biopsies he was still t-MDS.

Today was the first time I was going over my sons medical with another medical professional and had to say he has leukemia…this is so un frekin believable I am just sickened, honestly i’m not sure what I am just have that numb feeling about me again… A second cancer caused by his first and second cancer treatments with osteosarcoma… he started on chemo 2wks ago with an infusion through his LP and then onto a maintenance plan to try and control the cell growth trying to keep it in the MDS stage and prevent the t_AML; they where able to track the chemos that caused it to 2 of those that were used in his treatments 1 from his original MAP and 1 from the relapse in his lungs; so of course it can’t just stop there those flags have shown his t-MDS to be very rare and yup it continues…very aggressive! There has been cell growth since all the findings and he gets bone marrow biopsies pretty regularly now to track it.

My family all tested to be a match and our older son was not nor was I but Dad is a good back up donor; they found 3 perfect matched in the National Registry and only 1 has responded to start the process and all are out of the country to boot…He’s getting a big genetic work up to try and at least see if he’s pre-dispositioned for this or if it’s all just another bad deck of cards being delt.

So as we’re signing away for our now 15yr old son to get back into chemo what are we reading??? YES it carries a risk for yet ANOTHER cancer (lymphoma) oh AND it can kick in his OS: oh of course its “RARE” but he has fallen into that 3rd column endlessly, why should we not be really concerned?! GOOD GRIEF!!!!! So until we can get his transplant on schedule we do maintenance chemo’s with hopes to control this damn stuff…My son at age 9 dx with OS relapse at 12 with metastaic bi-lateral lung and now 15 with leukemia(T-MDS)…Silver lining????? it’s not full blown t-AML…things seriously need to change 🙁

Thank you everyone for all your great words of encouragement and prayers, please keep them coming, we need a donor match, a full match to give Nathan the best possible chance of beating this…

Mom <3

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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

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