Back on Track

So we made the pilgrimage to Guilford on Monday to see if Catherine could go to school this week. Happy to say her ANC hit a whopping 576 and she was able to go to school and the end of the year picnic! She had a blast. The bone marrow she had last week, also showed that she is still leukemia free. That was a huge weight off my shoulders. Despite her counts being higher, Dr. Joe decided to keep her off everything until our normal appointment which was today.

Catherine was very excited about today's visit because she knew that she would likely get a special present since her birthday is coming up (May 29th!). Sure enough, everyone made a big deal about her birthday and it made the visit go so smoothly because Catherine was in a great mood. With her counts up all the chemo started back up today: a lumbar puncture with a dose of methotrexate into her spinal fluid, an IV dose of Vincristine, and then at home, 2 doses of steroids (the first day of a five day course), the 6-MP and oral methotrexate. That's a lot on any given day, but today it was so much harder because she has gone 3 weeks taking nothing. I have to say, Catherine had gotten so good at taking her meds, but I guess the break ruined our groove. I'm sure she'll get used to it again. When I mentioned to Dr. Elisha that Catherine would be on Day 4 of the steroids for her birthday, he jokingly replied, "At least you know she'll eat the cake." Strange the way we look at things now.

First Official Delay in Therapy

So after two weeks off all medicine, Catherine is still neutropenic (her ANC was 220 down from 360 last week). Interestingly, the rest of her counts went up significantly. Dr. Elisha, who always tells me not to worry, started asking us if she had any runny noses (viruses can drive down your ANC). She hasn't, but Dave was sick this week (I made him wear a mask around the house) so the doctors think she may be fighting something off. Nice to know she can fight something off at all. Our schedule for today was to be a lumbar puncture (LP), an IV dose of Vincristine, and the start of a 5 day course of steroids, as well as the daily 6-MP. Her low ANC has delayed all that by a week which marks the first (and probably not the last) true delay in her treatment (luckily, the missed doses of 6-MP and methotrexate these past two weeks do not need to be made up). Since Catherine's port was already accessed for the LP, Dr. Elisha decided that although probably not necessary, he may as well perform a bone marrow aspirate to check for leukemia cells. He also did it put mine and Dave's minds to rest. We will know the full results tomorrow, but based on what he saw in the microscope everything looked clear and normal. Being a "the glass is half full" kind of guy, he also said that kids whose counts respond so dramatically to the chemo tend to do very well long-term with respect to their prognosis.

We will go back to the doctor Monday for a fingerstick test (at my request). If her ANC is above 500, Catherine will be able to attend her last two days of school. If not, there is always the 2 week camp I signed her up for in early June. On a much lighter note, "Theresa" Grandma took Alex to get a haircut today. The barber ignored my mother's instructions and went scissor happy - I think I was more upset about his haircut than Catherine's ANC!

Counts Still Low

Dreary day and a dreary visit. The ride up to Guilford was a tough one today - it was pouring and visibility was awful. I was so glad we made it there in one piece!!

As I wrote last week, Catherine's counts were low, particularly her ANC which was 350 and her hemglobin which was 9.8. On this portion of the protocol, if Catherine's ANC is below 500 she is taken off the 6-MP and Methotrexate that I give her at home for one week. I have to admit it was so nice not to worry about taking the meds, and within a couple of days off them, the old Catherine emerged. Her energy level was probably about 90% where it was pre-diagnosis, she didn't throw up once and she didn't complian about being tired or her stomach hurting. Obviously Dave and I had underestimated the power of the drugs we give her at home. With the old Catherine next to me, I truly expected her counts to be back up. I was stunned when Dr. MJ showed me the sheet - nothing had changed (her platelet count went up slightly and her hemoglobin actually went down some more!) On the plus side her reticulocyte count was much higher than last week (a reticulocyte is a young red blood cell. The number of reticulocytes in blood rises when red cell production is unusually vigorous, as after a major bleeding episode or after the bone marrow has been suppressed and is regenerating.)

With her counts down, she must still stay off the 6-MP and methotrexate and now also come off the antibiotic Bactrim that I give her three times a week. Bactrim is given during the entire two years to prevent Pneumocystis carinii pneumonia which is common in people with weakened immune systems. Hopefully this should help Catherine's bone marrow recover. If her counts are still low next Friday, the doctors will perform a bone marrow aspirate just to ensure that the leukemia is not returning. Dr. MJ reminded me that chemotherapy is cumulative in the system and low counts two weeks in a row are very common. As usual, I have been told not to worry (easier said than done!). She also said that they may have to start tweaking the dose of her meds.

Again, Catherine's spirits are great. I never cease to be amazed by her strength and the resilience of all the children I have met at the doctors' office. We should all take a page from their book.

Will let you know how we do.

I Guess the Chemo is Working

Although Interim Maintenance is supposed to be one of the easier phases, the higher dose of the 6-MP has taken its toll on Catherine's blood counts. For the past two weeks, Catherine's White Blood Count, ANC, Platelets and Hemoglobin have been slowly declining. We even had a visit in between treatments to see if she would need a blood transfusion (luckily she did not). As of today, Catherine is neutropenic (for the first time in almost two months!) and we have to stop all oral chemotherapy for one week to give her body a chance to recover. It is assumed that her counts will bounce back and we will pick up where we left off. Of course I was upset, and the doctors have me pegged so they prefaced this news by reminding me that this is exactly what they want to see happen. If her counts never dropped they would increase her dose of chemo. So in a weird way, it is good that her body is reacting this way given that the toxicity of her protocol is so low. On the plus side, they can see that her bone marrow is working overtime to increase her hemoglobin levels, so hopefully that will bode well for next week. Another plus is that for one week, we don't have to deal with crushing pills or eating dinner by a certain time so that she can take her meds. As usual, Catherine is handling this better than me saying that her counts will probably come back up tomorrow (yes, she does talk about her counts). Will let you know how she does next week!