Hey everyone! Just an update from home...
Well, let's see... we were discharged Saturday about 2:00pm. It's always so nice when things happen before you think they will. Alex was SO happy to leave almost a week early. I still don't know if they just needed the bed, or if she really was ready to go home.
Our first few days at home weren't really fun. Alex didn't feel well at all. She wasn't running any fevers and things were fairly calm, but she really was in bed the entire first few days. She seems to be feeling much better now. On Monday morning the home health nurse came and took blood... then we wait and see... it usually takes half the day for the lab to get all the counts in. As it turned out, her red blood count had stabilized and her white count had risen to 1,000 since Saturday. Unbelievable! They decided I could discontinue the I.V. antibiotics and also the neupogen shots. All great news... BUT, Alex's platelets were extremely low so they said to come right up. So... off we went to the clinic to get some platelets. There was really only Sunday in between platelet transfusions so hard to believe they were that low. Anywho... at the clinic Alex's doctor poked his head in the room to say hello and to see how Alex was feeling... He also wanted to talk to us about the Bone Marrow Transplant stuff. It appears that both teams (the oncologist team and the Bone Marrow team) are not in agreement as of yet as what to do with Alex. This situation is HIGHLY frustrating. We thought that everything was in order! Our Bone Marrow contact has already sent off for the HLA matching for the transplant. SO... being the person that I am... I called the Bone Marrow people when I got home and said that I wanted a meeting with BOTH teams in the same room so that we could ask our questions and we could get a really clear picture as to the risks and benefits of both protocols. Alex's doctor (Dr. Lemons) seems to think that the Bone Marrow's people estimates of successful chemotherapies are extremely pessimistic... and the Bone Marrow people seem to be sticking by their percentages. SO... what to do? We have a meeting with both Dr. Lemon's and the Bone Marrow team on Wednesday. I am writing down questions that I have this week. In the end, this decision really is Alex's to make. I don't think this makes her that happy, but I cannot make this decision for her. It's going to be the hardest one she has made for sure. Here's the thing... If she goes the chemotherapy route and she relapses again, she COULD (and possibly could not) have a BMT down the road... this is where they are in disagreement as to being possible to have a BMT after a second relapse. BUT... here is the big BUT... if she went the BMT route, and she rejected the BMT or for some reason she was having troubles, the only thing to do is have another BMT. The benefits to a successful BMT would be amazing. But... the risks and side effects of a BMT are very very broad, very common and at times can be fatal. All this can be said for chemotherapy too, though. We all remember Alex's massive stroke in November in 2007. So, you just don't know...
Well, even with all this said, it will be nice to meet with both teams and get a better feel for the situation. Alex's doctor is the head over the entire Oncology department at Primary Children's. We trust him. And don't get me wrong, he's not saying that Alex shouldn't get a BMT, he is just saying that it MAY not be the only way to go... and he wants her to be totally aware of all the risks that are involved. That is one part of all this that I am TOTALLY aware of. In fact, I know all too well the problems with a BMT. I guess this is what makes me a person that hates gambling. There can be a big payoff, but what are the odds?
SO... on Wednesday we have a really big day. First Alex has an appointment with the clinic for just a check up and then also for a Bone Marrow biopsy. No chemo will be administered. The doctor wants to check how well Alex is responding to everything before he proceeds with the next block of therapy. After the biopsy we go to this meeting with both the oncology team and the bone marrow team. It should be interesting. But it will be a long day for Alex.
Also this week... the home health nurse came in on Thursday for another blood draw (this will happen every Monday and Thursday that we are home) and her counts came back excellent. Her ANC is 3,400 (which is a NICE fat ANC), her red count is stable at 31, and her platelets at 43... which is still low but now climbing on their own. The next block of treatment cannot begin until they are in the 140/175 range. I don't think this will take that long. The next course is set to begin on the 28th of October, but the doctor wants the results of the bone marrow biopsy first. So, we wait. Something we are really good at. :D
I will update after our appointment on Wednesday with all the information that we received. Thanks for tuning in :o)
I can't tell you how grateful we are for all the cards and gifts! I can't even write "thank you" notes out quick enough. BUT, I am working on it! Thanks to the dentist that I haven't even met that sent me a WHOLE case of Colgate soft toothbrushes. Really... THANK YOU! And, to my very good friend Kristy... you are truly one of the most generous people I have ever met. I do have a great group of friends!
Here is what Alex and I have been doing at home this week (several weeks really). This is an 8000 piece puzzle that is a history of the world. It's an Italian artist and the captions are SO adorable! You just have to see it to believe it.
Here the sweetest man sits with us while Alex is getting platelets. This is the infusion room at the cancer clinic. There are about 12 lazy boy type chairs that the kids sit in. There are TVs and snacks and toys of course. The staff here are amazing!
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