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August 27, 2003 -- Interim Maintenance #2 (Days 22-56) /Maintenance #1 (Day 0) I hope everyone had a great summer. I can't believe it's almost September. A lot has happened since I last updated you all on Katie's treatments. I apologize for not returning any emails after I sent out the announcement of Kyle's birth. Within a few minutes of sending the announcement, the monitor on my computer went. I've got a temporary set-up until I get a new monitor. I'll give you a quick run-down of Katie's trips to the clinic since my last update. (I was with her for all trips to the clinic except August 5th.) July 16 was day 22 of Interim Maintenance #2 (IM#2), Katie had her CBC and her ANC was 1848. On July 22 (IM#2-Day 28), Katie had her CBC (ANC was 1980), lumbar puncture (LP), spinal tap and Methotrexate (MTX) spinal injection, and her Vincristine IV push. She was very agitated and after discussing with Dr. Rock, we decided for the next LP, we would try a different approach with the sedating drugs. July 29 (IM#2-Day 35), Katie had her CBC and her ANC was 2496. August 5 (IM#2-Day 42), Katie had her CBC and her ANC was 1890. August 13 (IM#2-Day 50), Katie had her CBC and her ANC was 1768. She had a rash on the inside crease of her arm. Dr. Rock suspected shingles and prescribed Acyclovir 3 times a day for 7 days in addition to her regular meds. It didn't seem to bother Katie much. We had to keep arm covered and we had to keep her away from her baby brother until the rash cleared. Katie finished her 56 days of the Interim Maintenance #2 phase on August 19. Katie hit a major milestone last week. She started Maintenance (Day 0) on August 20. She had her CBC (ANC was 1035), lumbar puncture (LP), spinal tap and Methotrexate (MTX) spinal injection, and her Vincristine IV push. Katie likes to be in control and likes to know details of what is happening during her treatments. Instead of doing the conscious sedation with a variety of drugs including Versed (which makes Katie VERY irritable), Dr. Rock decided to keep her awake and sitting up for the spinal tap and MTX injection--just giving Katie a local and some pain meds. After explaining to Katie what Dr. Rock was going to do, Katie's favorite nurse (Trudy) held her still while I held her hand. The procedure went VERY well and VERY quickly. Katie was a little scared at first, but quickly relaxed when it was over. She lied flat for 20 minutes (to let the chemo travel through her spinal column and to her brain) and was able to go home shortly there after. It was amazing to see how well Katie handled it. Katie's med doses will be adjusted throughout this phase to keep Katie's immune system suppressed (ANC between 1000-1500). This is supposed to keep the leukemia from getting the upper hand again. She now will go to the clinic every two weeks, unless something comes up. She returns on September 3 for her next CBC and again on September 17 for a CBC and her Vincristine IV push. During Maintenance, Katie will be taking the same meds she was taking during Interim Maintenance but on a slightly different schedule. She will continue to take Sulfatrim (anti-fungal/anti-pneumonia) 4 doses/2days a week, Senekot (laxative to keep her stools soft) daily and Zofran for nausea as needed. She will take her 6MP chemo daily, oral Methotrexate (MTX) chemo weekly and Dexamethasone (DEX) anti-leukemic/steroid 10 doses for 5 days every 28 days, and the Vincristine IV push every 28 days until the end of the 84 day cycle (November 12). Her next spinal tap and spinal MTX will be on day 84. Katie will repeat this cycle of meds, IVs and spinals until she completes Maintenance in 2005. Katie is doing very well. She won't be attending preschool this fall. We want to keep her as healthy as we can. She will be taking a few classes at the Hatboro and Ambler YMCAs. She wants to take swimming (which Dr. Rock highly recommends to help her build her muscles and bones), ballet and cooking. Yes, they have cooking classes for three year-olds!! It will be nice to see Katie interacting with other kids again. We still have to watch out for illness, fevers and her exposure to kids who have had live vaccines. The parents of her friends and family members have been great about letting me know what she may have been exposed to. We will have to inform her class instructors of her condition and ask that the parents in those classes let us know when Katie's been exposed to anything potential dangerous for her. Katie was thrilled to have a baby brother. She wasn't so sure if she wanted him to come home from the hospital with us, though. It took her about a week to get used to him getting a lot of the attention. She still has moments when she fake cries when Kyle cries. We make sure we go to her first. Mostly, she's been a huge help, and loves to sing to her baby brother. NEXT: September 12, 2003 -- Maintenance #1 (Days 14-20) |
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