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 chanceĀ 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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