Just A Fingerstick

Yesterday we went for what will now be our routine - a weekly fingerstick test just to check Catherine's counts. Given that we just finished a 5 day pulse of steroids, I knew the counts would be good. I will admit that I expected them to be much higher (ANC-2300, hemoglobin-12.3, platelets-180,000). In the past when she has gone on steroids, her counts have gone up beyond normal parameters. The last time that happened, Dr. Darryl had said that the further along you go in treatment, the less the impact the steroids have on your counts. I guess we are beginning to reach that point, plus she has a bit of a runny nose (like every other kid in town) which is probably affecting her counts. Dr. Darryl also mentioned that the bone marrow aspirate from last week shows that not only is Catherine still in remission, but her bone marrow is still trying to recover from Delayed Intensification (amazing how they can see that). That may also explain why her counts weren't as high as expected and I would anticipate that they will drop again pretty soon.
As I mentioned in my last post, Catherine had very severe jaw pain from the Vincristine. I am happy to say that by Tuesday it subsided enough that I didn't have to give her any pain medicine. And, as the week wore on, her energy level picked up again. We are still working on taking our medicine without a fight. After a month off, I shouldn't expect miracles.
Not to forget Alex - on Thursday I picked hime up from school a bit early. The kids were outside on the playground, and despite my hoping that school would give him a chance to be with kids his own age, I found him with who else? - the 4 year olds! He always gives me a good laugh despite his crazy antics!

Maintenance Begins!!

On Friday, we finally started Long Term Maintenance - 7 months and 6 days after her diagnosis (but whose counting?) Maintenance will encompass a once/month dose of Vincristine; a 5 day steroid pulse once/month; 6-MP every night at home; once/week dose of methotrexate at home; and a lumbar puncture with methotrexate once every 3 months. This past Friday, she got it all. The 'roid rage kicked in pretty quickly. She put it on hold for her friend's birthday party, but Grandma and Pop-Pop sure got a dose of it when they babysat Saturday (Dave and I went out to dinner for our anniversary). Sunday was spent crying in pain the entire day. As I've written, Vincristine always seems to give Catherine jaw pain, the severity is hit or miss. This dose was a big hit. We actually gave her codeine on Sunday, but it didn't work. On Monday, Catherine insisted on going to school. She complained about her jaw so I gave her the codeine and it seemed to work by the time I dropped her off. Unfortunately when I picked her up, her teacher informed me that she didn't feel well and cried half the time. At home, I gave her another dose of codeine. It seemed to work somewhat, but not enough. I called the doctor's office and Dr. Joe said to give her codeine every 4 hours and if the pain is still there in the morning to bring her in for an IV drip of morphine. I certainly hope it does not come to that. I also hope that Maintenance eventually becomes the "breeze" everyone tells me it will be. I think we were all spoiled by having the old Catherine with us for the past 6 weeks. Now chemo Catherine is back. It absolutely breaks my heart to have her cry to me and ask me to make the pain go away and there is absolutely nothing I can do but hold her.
Hopefully tomorrow will be a better day.

Counts Back Up

We went back to the doctor yesterday just for a fingerstick test. I am happy to say that her counts went up - ANC 1053!! She is cleared to go back to school, but I decided that it's best to keep her home this week because everyone seems to be sick and I don't want her counts to drop because of a virus. Although being at home is no better as once again Alex is sick. The fun with Alex began last Wednesday when he grabbed Catherine's Bactrim and licked the cup it was in dry. I called the doctors and they said not to worry; then Friday he stuck a small bead in his ear and we had to go to the immediate care center to have it removed; and Saturday morning, he woke up all congested. We went to his doctor today and once again Alex has an ear infection.
Speaking of Bactrim, Dr. Elisha thinks that we need to look at whether or not it is affecting her counts more than it should. Very quickly, Bactrim is an antibiotic Catherine takes 2x/day three days/week to prevent a type of pneumonia that people with compromised immune systems are prone to. It does have the side effect of suppressing your bone marrow and it seems to impact Catherine's too much. Her blood will be tested Friday for a glucose-6-phosphate dehydrogenase (G6PD) deficiency. If she does not have this deficiency, she will be taken off the Bactrim and put on a daily antibiotic called Dapsone. I guess it does the same thing as the Bactrim, but when I looked it up on the Internet, it says that it is used to treat leprosy!! I'll have to talk to the docs further on Friday about this.
Will update Friday when we try for 3rd time to start Maintenance!

Counts Still Low

Catherine's ANC dropped again this week to 493 so we were unable to start Long Term Maintenance...again! On the plus side, her hemoglobin went up to 10.2 and her platelets stayed steady at 193,000. We are going to go back on Tuesday for a quick fingerstick and we are scheduled to try starting LTM next Friday. If her counts are still low next week, they will do a bone marrow aspirate to check for leukemia, although they believe she is still in remission. Even if her counts are okay, they may still do the BMA...we'll see. Of course Catherine was supposed to go to a birthday party tomorrow. It always seems that when she has a b-day party, her counts drop. She has another one next week. Hopefully, it isn't a harbinger of things to come.

Catherine and Alex were in school this week (needless to say with an ANC of 493 she won't be there next week). Catherine and the other 3 girls in her class seemed to click and I think it'll be a good year. Catherine caused a bit of trouble on the first day by being a little stubborn with her teacher, but after a long talk, she behaved the rest of the week. Alex, the one I worried about being the discipline problem, was excellent. When I went to pick him up the other day, he gave a toy to a crying child to make her feel better. Very sweet boy - at least when he and his sister are not conspiring to drive me crazy!

Start of Long Term Maintenance Delayed

On Tuesday, Catherine, Alex and I drove up to Guilford for a finger stick test just to check Catherine's counts. All her numbers were great with her hemoglobin making a nice recovery over the weekend. Her ANC was 1280 so Dr. Elisha felt that for sure we'd be good to go on Friday for the start of Maintenance, where, as usual , the parameters to start are an ANC of 750 and platelets of 75,000. Imagine my surprise when on Friday Dr. Joe came in with her counts and said we were a no-go. I really thought he was talking about another patient and was stunned when he confirmed that it was Catherine. Her ANC had dropped to 656 (her platelets were a strong 199,000). In his mind this isn't considered a true delay, just her body still recovering from Delayed Intensification. So we will try again next Friday.
On the plus side, this means Catherine's first week of school will be sans steroids and all other meds. She is so excited to start so in a way I am glad that it won't be hindered by the side effects of Vincristine. I met with Catherine's teachers and the new mothers last week at a parent coffee. I was happy to hear that her new teacher is herself a cancer survivor and understands first hand the things we need to watch out for (i.e. germs).
Not to be left out, Alex started school this past week (a 2's program). The pandemonium of a group of crying 2 year olds being left alone for the first time seemed to leave Alex wondering what the heck was going on. But, he just went off with his teacher who said that after observing the goings on in a corner by himself for a bit, ended up having a great day. He was so excited to see me and Catherine when we picked him up and I felt like he sort of grew up a little in the three hours that he was there.
This week should be interesting with both kids in school. Hopefully it will end with the start of Maintenance.

The Energizer Bunny

As expected, Catherine got her platelet transfusion Friday. Her platelet count was 46,000, but with the long weekend ahead of us and a brother that, to quote Dr. Elisha, "likes to beat up his sister", the transfusion was absolutely necessary. The red blood cell transfusion did not happen. Despite Catherine's hemoglobin dropping down to 7.3, Dr. Elisha didn't think it was necessary given that her energy level remained very high and it appeared that her counts were on their way up (ANC 719!). He was truly on the fence about it given that I had already picked up the blood, but Cindy, our nurse, said that they could send the blood back to the hospital before it expired so that it wouldn't go to waste. We go back Tuesday now for a finger stick just to check her counts.
Her energy has remained high the whole weekend. Especially today - she rode her bike, we went to the playground and she played in the driveway with Alex. Of course, every time she falls or bumps herself, Dave and I cringe and are afraid to look at the bruise that will be left behind. Yesterday, while Catherine, Alex and I were playing, Alex's head accidently hit the bridge of Catherine's nose. Her nose bled for short time (thank God we got those platelets!), but now she has a bruise on her nose. Despite all these bumps and bruises, I always remind myself that these are normal childhood things and I should just be thankful that she has the energy right now to enjoy herself because I know that won't always be the case.
That said, we are scheduled to start Long Term Maintenance on Friday. I can't believe it! Everyone tells me that it'll be so much easier than these for first 6 1/2 months have been. I hope they are right!