This past week was really a good week for CJ. He seemed to be feeling pretty well most of the time. He has been playful and settled...he just won't eat. Quite a difference from when he was receiving those steroids. I can remember the doctors commenting during the steroid eating bonanza that there would come a time that we would be begging him to eat. Well, here we are!
Since his counts were up, we took CJ on a field trip to the mall. He and Hunter needed new shoes so CJ, Hunter, Mommie and YaYa headed to the mall for shoes and lunch with Aunt Kim, Kristin, ViviAnne & Cooper. We had a great day and a great visit. I'm sure we were quite the sight with one little bald head and another just beginning to get her hair back. ViviAnne is so excited that her hair is coming back! CJ doesn't talk much about his missing hair. Of course, we really don't draw much attention to it. Once or twice I've heard him say that he doesn't want to be bald.
It was a fun day for CJ (and all of us for that matter). He likes his new shoes and he thinks it was great fun eating lunch at the shoe store. Sheree tried, but soon gave up explaining the concept of "the mall". As far as he's concerned, he saw and ate food at the shoe store!
Since we were in the neighborhood, we stopped by YaYa's office to meet some of her friends and co-workers. These are some of the greatest people you could ever meet. They have been very good to CJ and to his family. Their donation to CJ's fund has gone a long way toward helping with CJ's medical expenses. We are very grateful to everyone at KESA for their kind support. During our visit, CJ found a Staples "EAZY" button on our office manager's desk. I'm sure you've seen the commercials on TV. Well, when you push this button a recorded voice says, "That was easy!" Linda was happy to have CJ take that button home with him. I wondered how long it would take for Sheree to confiscate that thing and hide it from him.
The next day, CJ had an appointment at the clinic for his chemo treatment, a combination of the dreaded Vincristine and Methyltrexate. The Vincristine is the drug that causes the pain in his legs. It also causes nausea and other side effects so the docs gave him an anti-nausea drug to help with that. Apparently, the doctors increase the strength of these chemo treatments based on the patient's ANC levels. CJ's counts at the time were 1500 so the doctors increased his dosage this time around.
CJ brought his "Easy" button with him that day. After the finger poke, he pushed the button and got the message, "That was easy." Then came the magic cream (This is a topical anesthetic they use to numb the area where they access his port.) Again, the button said, "That was easy." After they administered the drugs (CJ calls it his energy juice), he hits his button again, "That was easy." He had the staff really tickled with his new toy and it added a little fun to the clinic trip that day. Other than the long wait to see the doctor, it was a pretty easy visit.
The next few days were very busy. CJ got to spend time Saturday afternoon, and again Sunday with his Dad and his family. And he got to go to Paps Chris's house on Monday.
Today, it was back to the clinic for the PEG shots - or, as CJ calls them, those "BAD PIG SHOTS". After the doctors increased his last chemo dosage, his ANC has dropped to 400. The doctors don't seem concerned, just cautious. With counts under 1000 he is home-bound again and Sheree and Greg have to be very careful about exposing him to virus or bacteria. This means they must watch his diet as well - no fresh baked goods, no fresh produce (that includes strawberries, poor guy), no deli meats, nothing that can carry bacteria - processed foods only. They must again limit visitors to the house, especially during this flu and allergy season.
Well, that's pretty much the situation for now. CJ's next clinic visit will be next Tuesday. I'm sure Sheree and Greg will be praying for an increase in the ANC so CJ can "come out and play". I feel so bad for all of them, being cooped up inside with no visitors. I've been following a couple of blogs for other children at different stages of A.L.L. It seems that this back and forth with the ANC is going to be our lives for the next few years. Even when CJ enters the maintenance phase of his treatment, his ANC will fluctuate up and down as the doctors adjust the chemo dosages. I read from one mom today that her three-year-old little girl has been home-bound for several weeks now so she set up a wading pool (without water) in her livingroom and let little Emma play in her bathing suit. These A.L.L. parents are constantly challenged to come up with creative ways of dealing with so many situations from being cooped up at home to talking their children in to taking their meds. It's just so hard to think about this going on for so long in these little lives.
We'll post again when there is news to share. Until then, our sincere "thank you" for all of your prayers and warm thoughts.
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