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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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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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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2017 Taking AIM on Childhood Cancer…

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We were extremely pleased to be able to have had our 3RD annual 3D Archery Tournament; “Taking “AIM” on Childhood Cancer”, with Nathan going into his 3rd battle with cancer and needing the transplant this year we weren’t sure we’d … Continue reading

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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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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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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Chemo; A love hate relationship

Chemo chemo and more chemo…

Nathan is on another MAP some the same just a bit tweeked and more added in…Nathans cancer cells are not responding the way the Drs would like and they cannot do high dose chemo like he needs for fear his organs will react and transplant will eithet be seriously delayed or not happen. Nathans organs took a serious hit with his last battle with osteosarcoma, creating a very difficult decision at that time and having to stop treatment to kill the cancer to save his organs from shut down and failure. It’s been 4 1/2 yrs since that and although Nathans organ have recovered and are functioning they are damaged and that remains a problem and serious concern. Blood counts remain low in the neutrapenic levels already with transfusions of necessity on board to maintain, his white cells continue to drop but cannot at this time be rebooted due to feeding the cancer cells and encouraging growth and strengthening and we do not want that to happen, we are in that time of the mask again and carefully monitoring visitors. 

The bone marrow biopsies continue to show rare and aggresive flags that are and will make this battle more difficult for Nathan. We have had several donors pop up out of the country none yet being able to use for Nathan and awaiting one the last(on the list) donor match results now; this donor has already sparked a special place of hope for us though, as he just popped up suddenly; as we where hearing about the results from the last this new donor just showed up,  meaning he’s a new registrant on the donor list and matched up with Nathan: as the Drs where saying this just don’t happen, and has never happened to them prior. I believe in fate and my faith is strong and we need a perfect match from a donor to continue to transplant with the least amount of risk and relapse for Nathan as he already has too many odds stacked against him…although I have a good feeling about it I’m not getting my hopes up to be let down again I will continue to pray.

 Nathan is hanging in there and doing his best to be himself, after a red bag transfusion last week and a beautiful weekend we where able to get him out and about to enjoy some of that sunshine and fresh air. Nathans happy time is gaming online with a great friend he met in his new school the 2 of them crack me up listening to them as the FaceTime anf play online the house is full of laughter from both boys, I absolutely love listening to it. 

Nathan has a special day coming up in which we are totally grateful for…his 16th birthday is on Monday; not exactly what we had in mind for him with way of celebration but we have him with us and for that we are eternally grateful; Nathan has spent a many of birthdays(6yrs) in this situation fighting cancer and getting chemo and although he hates it all he totally knows it’s what needs to be done,  his Drs are trying to work it out that even though he has to have his chemo that day it can still be a special day for him too, but we know very well that we wont know that till the day comes as his counts are very low and welp they trump our situation so it makes it VERY DIFFICULT to make celebration plans as we hoped for.

We want to thank everyone who keeps Nathan and our family in thought and prayer as I’ve known from prior experiences and feel it again there are honestly days we ride solely on those prayers…

Thank you and God Bless!

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Maintenance Chemo

As many know Nathan has been on a maintenance chemo schedule with hopes to halt the growth and progression of his cancer. The first was infused through an LP procedure and then he went onto chemo injections that he had to go to the hospital everyday for which consisted of 3 injections of chemo each time and then onto the chemo administered at home every day…he did well with these all considering what he’s experienced in the past, the big problems is chills, fatigue, nausea, and of course his blood counts. He ended last week with a BMB which we shared that there was no new growth/maturing in Nathan’s cancer cells and YES that’s fantastic news but in the same breath Nathans cancer cells did not decrease in % at all they stayed the same, the Drs where hoping to see a decrease to benefit/aide Nathan in this battle. As I explained before there are many Drs involved in conference with Nathan’s case as it’s not common, but pretty rare…concerns are high in controlling it still and Nathan will be going back onto more rounds of chemo, with added meds/chemo’s everyone was hoping that by now Nathan would be in the transplant process. The added meds are still being determined as the results we have now are only preliminary results and Drs are waiting for the actual full results before making any decisions. Nathan’s body has been through a lot of chemo’s in these last 6yrs, and not just regular doses but HIGH DOSES of chemo’s and his organs took some major hardship during his second battle with osteosarcoma, that we have to be aware and cautious of that while treating in this maintenance course; if things are to hard they can create organ failure and Nathan’s transplant will be put off. We cannot emphasize enough how badly he NEEDS this transplant it is his only chance of beating this.

As far as the donors are concerned…Nathan did not match anyone in the states(other then his dad being a partial), they had to reach out to the international registry for him and found 3 matches, the 1st donor who is going through all the process is still on the possible list, 2nd donor is not on the registry any more so he’s out and the 3rd has responded and is going through the process of testing now, once his results come back the Drs can make a better decision as to where to go from here.

Nathan is hanging in there he has good/bad days and days of just being here feeling like junk, his nausea has been a bugger these last days and that creates another problem for him; eating, Nathan needs to keep eating to maintain and prepare for transplant,as he goes through that process his body will be put to extreme limits and he will need a lot of strength before hand to push through it all. Although we are anxious to get our boy into transplant to save him we are not anxious about it at all with what he will endure, it will be a very trying and difficult time/experience, and it honestly totally scares the hell out of us.

I cannot deny I’ve been a bad about pushing him to do his school work as i honestly sit and look at him and think i just can’t make that fight right now, I just want to enjoy his company and laughs while he’s in the mood, so yes he’s gotten behind a bit and those that know me…that is not a thing I ever let happen but one thing I know is every laugh I share with him through these days of worry and concern along with much fear is vital, not only for me but for Nathan as well.

We will have another meeting later this week and find out our new direction with this all, I ask you all to please keep Nathan and my family in your prayers…

Thank you and 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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