Start of Interim Maintenance

This past Friday marked the end of Consolidation and the beginning of a new phase called Interim Maintenance. It will last about 50 days and is what Dave and I like to call the calm before the storm. While it consists of higher doses of oral chemo at home, her treatments at the doctor's office will be more spread out (although we will continue to go every week for blood counts to determine her ability to take her weekly dose of methotrexate at home).

Catherine started a five day course of the steroids this weekend, which she will do every four weeks for the remaining 2 years. It is amazing how after just one dose her appetite kicked in (the egg sandwiches are back!) and the steroid tantrum reared its ugly face. While I was dreading the start of the steroids, I was thrilled to see Catherine eat again as she has lost more weight than she gained when on them originally. That said I have come to the conclusion that the monthly steroids are for beefing patients up during the course of their treatment.

As the doctors promised, our lives have settled into a new routine and Catherine seems to view her condition as normal. Apparently, she is flashing her port to her teachers and friends, telling them that is where the doctors put her medicine. She LOVES her doctors and talks about them constantly. And, at her request, we read a book called Kathy's Hats which is about a little girl with cancer. A couple of weeks ago I was both alarmed and comforted when Catherine pretended to take blood from a baby doll's "port". Dr. Elisha thought this was great and that her behavior was a healthy acceptance of her condition.

As I wrote earlier, Interim Maintenance is the calm before the storm. When it ends, we will start Delayed Intensification. Basically, it will be an incredible amount of chemo and we will be making a lot of trips to Guilford, as much as 5 times a week. But that's not now, and we've learned that we just have to take everything one day at a time.

Back from the Hospital

After 4 days and 4 nights, Catherine and I finally came home from the hospital. As it turns out, her blood cultures were all negative for a bacterial infection - what she had was a virus. To be discharged Catherine had to be fever free (below 100.4) for at least 24 hours. With that as my parameter, I thought we'd be out of there on Thursday, but at 10:30 Wednesday night, Catherine started throwing up. She couldn't even keep water down. To make matters worse, her fever went back up to 102. The next day, Dr. Joe ordered her second transfusion to help her along (on Tuesday morning, Catherine received a blood transfusion as her hemoglobin levels fell well below normal levels, common when anyone is fighting an infection, but more pronounced for someone on chemotherapy treatment). This transfusion was something new to us - IVIg, or Intravenous Infusion of Immunoglobulins. Immunoglobins are the part of our white blood cells that help fight infections, they are also the direct target of Catherine's chemotherapy protocol, so this transfusion helped her fight off whatever virus was making its way through her system.
On a side note, this hospital visit was much different from our first. Happily, we were in the same wing as last time, so the nurses faces were all familiar ones for Catherine. And, since her ANC count was so high, we were able to leave our room and head off to storytime and Arts & Crafts in the West wing of the pediatric unit. Catherine also had a blast in the playroom that was located right next to our room. Once the IV was de-accessed from her port-a-cath, Catherine was truly free to roam the halls without me trailing behind. The nurses got a kick out of the real Catherine whom they had not met two months ago. As a matter of fact, Catherine kept Dave and Alex waiting downstairs because she wanted to finish her art project with one of the hospital volunteers. After we got in the car, Catherine thanked me for taking her because she had fun at their "school" (storytime) and she enjoyed all their toys. I'm glad it was a positive experience for her, but I hope we aren't back there anytime soon!

Hospital Visit

As many of you are probably aware, Catherine was admitted to Yale New Haven Monday night. Her leukemia has not returned but she was running a fever all day Monday and as a standard precaution, she was admitted and a battery of blood tests are being performed.

Her immunity is strong as measured by her ANC count and her platelets are at normal levels which is a major relief. A quick analysis of her white blood count indicates her body is fighting off some form of viral or bacterial infection - likely picked up from her brother! So far we do not have the results of her blood test but it appears it is likely bacterial. While at Yale, she is receiving antibiotics intravenously in addition to her standard treatment protocol.

Catherine's spirits as one would imagine have been dampened a bit upon spending time overnight in the hospital but again her doctors told us to expect this possible complication. In fact, they would have been worried if she breezed through her treatments without a single hiccup.

If anyone needs to contact us, Theresa is still at the hospital while returned home tonight to pick up somethings. I will be returning in the morning but we are reachable by our mobile phones. Hopefully I will have some concrete blood results on Wednesday.

Take care.