Two updates - Jade's appt went really well, Dr. Ryan was very reassuring that he is quite confident this is just mono and we will continue to track the fevers and go back in a month. Hopefully this will be behind us soon - however after looking at the prospect of having two kids with cancer, we suddenly feel as though life is much easier. Maybe that scare was a reminder that things can always be worse, right?

Brinley's clinic did not go so well. Well, it went fine up until the lumbar puncture. Brinley's weight went up by almost a full pound, that was great news. Hopefully during maintenance she continues to grow normal. She has fallen under the 3% percentile for her age, so we need to see her grow. We got the rundown on the new phase, MAINTENANCE! I can't believe we made it to maintenance! Today she got IV vincristine, that is the one that has caused some fevers with her, hopefully not this time. At least her counts are good, so we probably wouldn't end up inpatient. Maintenance will go like this: Once a month she will go in for IV chemo. Every third visit she will get a lumbar puncture for chemo in her spine. She will take 5 days of the steroid per month, starting today. They call them "steroid pulses". She will get nightly chemo, 6-MP, orally every night until treatment is over, unless they have to hold chemo for low counts or illness. She will also take an oral med called methotrexate (the same chemo she gets in her spine) once a week. A lot of oral chemo, but much less IV chemo. We got an off treatment date!!! It's actually November of 2010. Less than 2 years! It's nice to have an actual date to look forward to. That date will not change, even if they have to hold her chemo.

After clinic, we went down to the RTU for her LP. If you don't know what that is yet, that is where they sedate her and stick a needle in her spine. It has two purposes, they draw out spinal fluid and check for leukemia cells, and they inject chemo into her spinal fluid. Today the nurse practitioner did the LP. She came out after a while and said she had to poke her 3 times and could only get blood out, no spinal fluid. She finally had to call the doctor to do it, and the oncologist got it the first try. When Brinley woke up she was in a lot of pain, these can cause severe headaches (Brinley has never had a headache with them before). They had to finally give her some pain medication to calm her down. She wouldn't eat or drink. I am very upset, from now on I will request only the oncologist do the procedure. The nurse practitioner said that this hardly ever happens with her doing the procedure, but she will not be trying again on Brinley. She vomited on the way home and is not feeling great now. It seems like there is always something with these LP's, last time it was what landed her inpatient with 104 fever. (that was from the sedation though). At least we are going to every 3 months now. We won't be back in there for another month!! Hooray!


Anonymous said...

Congrats to jade being in the clear. Who would've ever thought you'd be happy she had mono! And congrats to lil brin brin being in her maintenance phase. And congrats to u and ur hubs welcoming in another addition to the family. I read ur blog everyday and brinley is always in my prayers. I'm so glad Jade is safe... u and ur family already have a full plate! Good luck with everytihng sweety!