Posted by Mommy
We made it through are first week of week long chemo treatment. Each day got a little better than the day before with CJ getting used to the in home nurse coming over each day. He even got his port de-accessed with no problems. In fact he sat in a chair by himself just asking the nurse questions the entire time she worked on him.
Today we went into the clinic with CJ in a bad mood. He didn’t want to take his morning medicine, or put on his magic cream over his port. He did okay getting his finger poke done to check his counts, and didn’t have any problems with the doctor coming in to give him a check up. His ANC was only 500 but at this stage chemo still continues. He decided he didn’t want his port accessed and especially didn’t want to keep it accessed for the rest of the week. After fighting and having to hold CJ down kicking and screaming to get his port accessed, we left with both of us mad. But the good thing with CJ is by the time we got home he was over being mad and talking my ear off about everything he knows, which is a lot, (just ask him).
The rest of this week we will have to go through three more days of chemo, with the in home nurse coming each morning. On Friday she will give CJ his chemo and take blood to check his counts just in case they fall too low, and he needs blood before the weekend. Next week we go in for just a count check, as long as his counts aren’t too low. Then we will have a couple of weeks off from chemo before maintenance starts. We are staying strong, knowing that the hardest part is almost over. Less than a month and our weekly or more visits go down to monthly, and maybe we can get back to a little bit more normal life.
FINALLY!!! A light at the end of a very long tunnel. What's CJ's blood type again? O+? If so I'll ask around for friends to donate this week....just in case.
ReplyDeleteSheree, when Grandma had her chemo, she had to get shoots, daily, to keep her counts up. I THINK the meds name was nupergin, something along those lines. Now that might just be something they use on women with Breast cancer, but maybe it would be something to look into to keep his counts in a more managable area? I'm really afraid if they keep giving the chemo with counts that low, it is going to be horrible for all involved (Craig is his father, and when either/or are sick they both behave the same, so I DO know what you are being put through.) And if those little shots will keep his counts up to a decent point at least he'd be able to go to Craig's and give you a break. Heck, you can take him ALMOST anyplace instead of being stuck indoors. Winter will be here soon enough and he enjoys the sun and the water so much, shouldn't he be allowed to enjoy it, if it's possible? Also, with it being so hard for Craig right now to get around, if he could just go there, that alone should give you some time to get healed up also.
Maybe if his counts behave he can go to Ohio (Dayton) for the weekend with us next weekend. We are taking Oliver. It's for the Conley family reunion. Leave Fri afternoon, be home Sun afternoon/early evening. We will have to wait and see I guess. I would ask about those shots though..it can't hurt to ask. And even if he needed them while in Oh, we can just take him to St E's (Elizabeth's) to get them, he'd need 2 if he went with us.
Let's see what happens this week. You ask about the nuprigin and see what they say about that. Maybe by Fri we will know for sure one way or another.
I'm going to copy the pic and video of CJ and Mom Williams since I don't have a cluse how to get a pic up here.
Hang in there Sweetie, believe me, it could be so much worse. I know it's easy for me to "say" while I've been here and you've basically done it all, but it WILL get better.
But you already know you can call me anytime, and I'll be there ASAP....in my time, I know, but I WILL be there!!!!!
Love ya all,
Amy
"Almost done with heavy chemo." These are the words you have to chant. And then on his weeks off while you wait for counts to recover just keep telling yourself that too.
ReplyDeleteI know it is hard to understand but with this type of cancer that both of our children have this low count thing at this stage is what HAS to be done. It is the last push to kill as much cancer as possible and start to retrain the bone marrow on how to produce only good healthy cells. That is how we have to look at it. Their bone marrow is producing the cancer cells right along with the red and white cells and this LONG chemo is to train the bone marrow how to do it right. At least it has helped me to think about it like that w/ ViviAnne.
Oh, I know that by reading Amy's comment above some other people may be asking the same questions about blood donations and such. I have been told by the doctors a couple of times that our children should not get donor directed blood. For two reasons. 1) We never know when they will need a transfusion and the process that is involved with donating is lengthy so the two just don't match up. And 2) Which is the MOST important reason, is that IF, Heaven forbid, one of our kids would ever NEED a bone marrow transplant they can NOT receive that transplant from someone they have previously received blood from. Because of the antibodies and the transfusion would not take. SO our Doctors ask people to donate in Honor of our children that way people are still donating but not ruling themselves out as possible bone marrow donors.
Hope that all made sense.
OH and the nuprigen shots, they will run a check on his immune system when he gets into maintenace to see if he needs those and they will continue to check those levels throughout treatment and even years after. But as of now the chemo is designed to lower his counts so the shots are not really an option for now. One day yes but not now. It is so hard to swallow that fact, I know. But believe me, this is why the Doctors do not get worried when counts bottom out at this stage. It is because they are supposed to. That does not make it an easier or less scary for us family members but that is just the straight truth about it all.
Hugs
Kristen