Our last session of chemo was scheduled for March 17. We made cookies for the doctors & nurses. I made a scrapbook page for all of the staff to sign. The nurses gave her balloons and a toy. I was so disappointed that the camera I brought didn't work - the batteries were dead!! But, still I was thrilled it was our last day of chemo.
However, I should have learned by now that things with Catherine rarely run smoothly. Catherine has had the same chemo drugs for 16 months: carboplatin and vincristine. We have never had any problems with her infusions. Well, on the very last day of her chemo, Catherine had a dangerous, instantaneous reaction to her chemo.
Here's what happened: 25 minutes into her 60 minute chemo infusion she started throwing up and developed hives & spots & welts all over her body IN A MATTER OF MINUTES. Apparently that is the sign of an allergic reaction. They surrounded her by nurses & doctors: one with a crash cart, one taking vitals, one with a chart and a watch writing down when she got which spots, etc., and the oncologist listening to her breathing with a stethoscope. She was fading in and out of consciousness. I cannot stress how quickly this happened - literally she went from playing with a toy to passed out and spotted from head to toe in less than 5 minutes. Her face was totally red and swollen and her torso was covered in red spots.
Her vitals stayed strong the whole time and her respiration was OK the whole time. We had to stay until every single spot/hive disappeared. It started at 4:48 p.m. and we were allowed to leave at about 6:15. It was intense, but started and ended very quickly.
We kept her on Benadryl for 24 hours and she has been a little sleepy and fussy. But, she is doing fine now with no more signs of hives or spots. She has not vomited at all and is back up to full strength formula through her tube (we had back-pedaled to juice to limit vomiting, then diluted formula).
Although we are officially done with chemo, we will still be busy:
Our next brain MRI is March 23rd, than every 3 months after that for 2 years. Then the brain MRI's will be every 6 months for a few more years, than annually for the rest of her life.
She will have weekly blood checks for 1 - 2 months to make sure her platelet counts go up and stay up and her white blood cell counts stay stable. Her platelets have been dropping for the last week (180's on Thurs, 150's on Friday, 93 yesterday). If they get below 30, she will need another platelet transfusion. However, if her body gets dependent on receiving platelet transfusions, than she won't make them her own. So, they wait until your platelets are very low before they will transfuse.
Once a month for 6 months she has to get her chemo port flushed with Heparin, so it doesn't get clogged. Then, if she has not relapsed in 6 months, the port can be removed (which is a surgery). Most kids with brain tumors who relapse will relapse within the first 6 months.
Catherine still needs to have her bladder repair surgery in April. That has not been scheduled yet.
Obviously our main prayer request is complete remission - so many kids relapse. It is heartbreaking. We are also excited to see how she will gain in strength, weight and energy over the next year. The oncologists have warned us that it can take a year for children this small to rebound from chemo, and some of the side effects can be permanent. She has had some hearing loss and nerve damage in her legs, which we hope will fix itself now that she is not getting more chemo in her body.
We also cannot beleive it is over - it seems like just yesterday we were told that she had a brain tumor. I remember looking at her beautiful face and thinking "How can there be a tumor inside that cute head?" It all seemed surreal. It still seems like a nightmare. I feel like we have been treading water for 16 months - just surviving. We have tried to process our emotions as we have gone along, but I am not sure if it has really hit us that our little girl had cancer.
No comments:
Post a Comment