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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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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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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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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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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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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