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

Facebooktwittergoogle_plusredditpinterestlinkedinmail

Maintenance Chemo: controlling the cancer till Transplant

Another day and 3 more chemo injections today for my boy, day 2… its a bittersweet process: hate this whole thing but these injections Nathan has to receive is hopefully keeping the cancer cells from maturing from t-MDS to fullblown t-AML and thats very important for his transplant and progress. He started the injections yesterday and absolutely hates it, he feels like crud, is very achey and tired and when you have to fuss with your child to get up in the morning to go get chemo injections it just plain sux, its a horrible feeling as a Mom. To have to watch and encourage is difficult especially when you wouldn’t want to do it either but you know it’s what your child needs for any chance to beat his cancer, and the third time around is just plain exausting, both mentally and physically.

We have many great thoughts and prayers being sent our way daily and we are extremely grateful for that….Thank you to all of you they truly mean a lot to us all.

Facebooktwittergoogle_plusredditpinterestlinkedinmail

Turn of Event’s – Lap 3

Thank you everyone for all your kind words, words of encouragement to Nathan and your prayers…
It has been a very busy week; Nathan was admitted into the hospital late Saturday evening for a fever and bad chills, the concerns with the fever for Nathan where because he very low blood counts, the fever represented a possible infection, this kinda of stay we are very familiar with from the last 2 cancer battles.

Thankfully the blood cultures showed no growth for infection, but the thought is the cancer is the cause of the fevers, as Nathan runs a low grade fever, chills, and gets winded every evening, we need to watch how high the fever gets as with not having an immune system there is always a chance for an infection to find its way.

Through the course of our stay more results came back for Nathan and there are even more concerns: Nathan has a rare diagnosis and on top of that it’s been determined to be aggressive. Nathan’s Dr’s have been in communication with Dr’s across the country consulting, there are many voices going into his treatment to give him the best care they can and chance to kick it’s butt, his specific diagnosis is just not common in children and with it showing it’s aggressive that adds to the complexity as well. The Dr’s have repeated the bone marrow biopsies and also did an LP, along with that LP he received an infusion of chemo through the access, they need to make sure the cancer cells have not matured and entered the spinal fluid. This brought us into the chemo world much sooner then we had anticipated, so of course preparation instead of having time was done quickly. Since the new information has come to light, the Dr’s have had to come up with a new plan to get Nathan to transplant as long as these last marrow biopsies show the t-MDS has not matured.

Nathan is doing the best he can; naturally he has his times of fear, sadness, and concern and others he’s plotting and planning just how to prank his nurses when he is inpatient again and for the transplant stay; that’s our Nathan!

We are home again for now and waiting for news of his test results so we can get this path paved and on the way. Please keep Nathan and my family in your prayers, this is gonna be a very different battle for him and our family to go through but we will do this…

NATHAN IS A FIGHTER; AN ULTIMATE WARRIOR!!!!!
Thank you all and 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