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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Dates of Distress…

There are many dates we are just geared to remember in our lives automatically from childhood into adulthood: birthdays, anniversary’s, holidays, and others that may play a role in our everyday lives…

WE have dates too just like everyone else, but there are additional dates plugged into our brains, ones we don’t want to remember, ones that bring heartache, heartbreak and many times devastation to our lives…These are dates and times of our child’s diagnosis with childhood cancer, surgeries, start/end of chemo’s, and bad news; the list goes on, dates we should not ever have to hear. You try very hard to get past these days as the calendar reaches them, you tell yourself this year will be different: this day we will make it matter for other reasons/happier ones, you try to replace bad news/feelings with great memories and positives news…you can’t; you just can’t replace these days as if they never existed, because they are a part of you, your family, your heart, and your life. These date are dates that no one should ever have to have embedded in their minds, no one should have to look at that calendar and dread what tomorrow will bring because they were told however long ago it was, their child has cancer, time is limited, no more we can do, and again the list goes on and on. Too many parents are hearing these words too many times; one bad piece of news after another…IT NEEDS TO CHANGE!!!
Today on September 27, 2012 we stopped Nathan’s chemo, we stopped his treatments because his treatments were and had caused so much damage to his organs that the next one could be the one proven to shut anyone of if not more then one, shut them down, them? His organs! We had to choose his path that day and decide if we were going to continue to fight his cancer or try to save his organs now…how do you as a parent, not educated n this world make this decision; you have to weigh it all in and decide on the here and the now; it’s like using the scale system to decide your child’s life and these are decisions the Dr.s cannot make for you, just provide you with information to help you along the way. we decided to try and save his organs; to try and maybe prevent failure and need to transplant, we won’t really ever know if we’ve succeeded till we get there because it could happen at any time now in his life, his organs are damaged that’s a definite but what does that mean for him? It means you go everyday just praying you made the right decision. Its dates like these I talk about above, dates that you should not have to hear when you are enjoying your child grow. This is a date that will as well as many other forever be engraved into my mind, not for a lack of trying to erase it, you cannot; it don’t work like that. Just when you thought it may be gone you have to explain his last day of chemo to someone and that he didn’t finish his treatment plan and why he didn’t finish…
Oh and let’s not forget he’s sitting right there next t you listening-observing your every move and taking in every word you say, they understand far more then you give them credit for; for this is how they grew up listening to these discussions and terminology around them…IT’S NOT RIGHT!!! So many times more then not I hear the question how long has he been off treatment? I reply with the correct time and I hear excitement, yes that’s great I am excited but for Nathan there has been a game changer in there that many do not know or understand anything about…This day 4 years ago changed many things for Nathan; everyday is precious for us because we truly do not know what tomorrow will bring, but yet we have to raise him in a way that he’s normal; when all we want to do is just celebrate everyday that he’s ok and nothing is going on. You just can’t and usually don’t explain that to everyone…that bittersweet day of “no-more chemo” and “organ(s) failure- high risk” you hear phrases like it’s not “IF” for your son now it’s “WHEN“…WHAT??!! yes you hear these words, you deal with changes along the way that only make you wanna celebrate everyday because you just don’t know what’s lurking around the next corner…

These are dates you just can’t get past…those dreaded, embedded dates!

Childhood cancer knows no boundaries and treatments are very old and were created for adults…help make that difference in the way our children get treated while fighting childhood cancer(S)… SHOW YOU CARE BE AWARE!!!!

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