Hello everyone. We have been really busy but now I have time to catch people up with what has been happening since the previous post.
Starting on Monday (8/30). Clara was scheduled to have a central line put in which would allow for her chemo treatment to start. Apparently the chemicals are harsh enough that they don't want to administer them via traditional IV in the arm or foot. The plan was to either have a PICC (peripherally inserted central line) or a Hickman line which is a more direct and permanent solution. Because she was neutropenic the doctors were worried about infection so they decided on the PICC. Unfortunately she was so swollen that after multiple attempts (2 left arm, 1 right arm, 1 right leg) it was decided to insert a catheter subclavian (under her collar bone). During this procedure she was asleep so they also gave her a lumbar puncture with her first dose of chemotherapy because of some leukemic cells that were in her earlier spinal fluid sample (from then they thought it was meningitis). The standard here is a monthly injection of chemo into her spinal fluid and because they saw some leukemic cells they are adding a weekly dose for the first month.
On Tuesday (as I also mentioned on Monday) Clara was pretty swollen from retaining fluids. She seemed to be in better spirits though and we actually got a smile at her favorite toy, "Happy Man". Today the main regimen of chemo was to start. She is on the study AML08 which is a collaboration between Stanford and St. Jude Children's Hospital. The initial difference from the standard of care was a randomization for a new drug. Unfortunately, her liver function was below the cutoff required by this new drug so she was simply given the standard drug set. This started with a high dose of Cytarabine on Tuesday night. This started day 1 of her chemotherapy.
Tuesday night / Wednesday morning we received a series of scary phone calls about Clara. She was now getting some fluid on her lungs as well as having deteriorated kidney function. The doctors thought that the signs pointed to a dosage effect response to the cytarabine. The fluid buildup was exacerbating any kidney problems because of the added pressure on the kidneys. She was brought back up to the PICU and was put on a kidney dialysis machine and a breathing tube. They also took this opportunity to put in a PICC in her groin and an IV on her wrist and her head. When we arrived in the morning all of our stuff had been removed from our room in Oncology (where we had been slowly moving in with the intention of staying for months. We were both very nervous about seeing her hooked up to all of these machines but finally got to see her. She was incredibly swollen and at this point had gained over 3lbs in fluids (She was admitted at 13lbs and was now over 16lbs).
Thursday she was in a lot better situation in terms of fluid retention. The dialysis machine had been removing fluid slowly overnight and Clara was significantly less swollen. She was completely drugged though and was asleep the whole day.
On Friday when we came in, she was already off of the dialysis machine. She was looking very thin at this point, especially in the face. Throughout the day Friday she was asleep on the drugs they had given her to relax. Her chemo was also restarted today (Day 1 starts today at 5pm). They decided to move her from the original Induction I plan to the plan for Induction II (Which uses lower doses of Cytarabine - low dose is actually the standard dose used in most protocols). Induction is the phase of therapy where they try to kick the disease into remission. This plan now calls for Cytarabine for 8 days, Etoposide for days 1-5, and Daunorubicin on days 2, 4, and 6.
On Saturday they began to dial back the breathing machine. She had long period of open eyes! She was still drugged but they were starting to wean her off of the medications. That night she had a ventilator sensor begin malfunctioning. These ventilators provide a puff of air when the patient is breathing in so that it doesn't feel like they are breathing through a straw. Unfortunately, the machine was also giving her a puff of air when she tried to breath out. Clara was not happy with this (who would like to have air blown into their lungs when they are trying to breathe out?). Before they figured this out though, Clara was probably overly medicated to sedate/calm her. The plan was still to take her off of the ventilator late tomorrow morning. She slept wall that night from the sedation.
On Sunday Clara was still in PICU but finally came off of the ventilator. They also removed her hand IV. She was moved to a different room in the PICU which was more away from the hustle and bustle. She was doing very well and the doctor decided to let Brooke hold her for the first time in quite a while. Clara was having some withdrawal from the drugs and so was awake for over 9 hours, but finally she was able to settle down and with her Benadryl that night (to help with nausea) she slept the whole night.
On Monday she was finally moved back to the Oncology ward. Hopefully she will stay put here for the next month+. She was back to her admission weight today and looked a lot better. We got a good laugh out of her today and she actually was able to nurse from Brooke for the first time in 10 days. She seemed a little confused at first but managed ok in the end. Monday night was a rougher night for her. She was still a little wired from the drug withdrawal and so was not able to get to sleep until 3am. At some point during the night she decided that she no longer needed her feeding tube so she helped the doctors by removing it.
She didn't have any trouble staying asleep though. On Tusday she slept until she had to go into surgery again. She had to have the subclavian line removed due to a bad blood culture (possible infection but probably not). They also wanted to remove her groin line because it is hard to keep clean. They took her down and were able to easily insert a PICC in her left arm as well as give her the weekly lumbar puncture for her chemo. After the surgery she was hungry! (No food allowed since 3am) The nurses were giving her pedialyte (60mL) which she had scarfed down. Brooke ran in and was upset because she wanted to nurse her. Fortunately Clara wasn't done yet and continued to nurse on Brooke and was generally a happy baby. She actually looks like herself (except for some tubes and lots of poke holes all over her body) and was able to be carried and fed well throughout the day. Brooke stayed the night with her now that she isn't under sedatives and had a tough night again with Clara not finally settling down until late. Brooke reports that Clara kept waking up and laughing at the vital signs monitor.