Liv had another great week and when Monday rolled around and it was time to check counts, I was just sure that she would make counts and we would start IM 2 the next day. But, her patient coordinator called to let me know that her ANC had dropped even more! I couldn’t believe it, she had so much energy and was so happy and healthy. Again, she told me not to worry, that a lot of patients are delayed a few weeks before this round. Its just the nature of the chemo she had been on during Delayed Intensification. The rest of her counts looked awesome so, we decided to enjoy another week off and not worry about it! She still had low counts so we couldn’t really go anywhere that there were a lot of people, but we did a lot of fun things outside with just our family.
Her counts on September 20th
Liv got the awesome opportunity of doing a photo shoot for Persnickety Clothing! She got to wear the Mya Dress for it. Persnickety is donating all the proceeds from this dress to Liv through Millie’s Princess Foundation. Liv was so excited to get to do a photoshoot with other little girls who have cancer! We went up to Salt Lake for the shoot. Grandma came with us and afterward we took Liv on a little date to Freddy’s for dinner. At Freddy’s a really nice man paid for our dinner and came to talk to Livvi, it was so sweet of him!
On Sunday we had our ward Primary Program. I wanted Liv to be able to be a part of it so badly, but we weren’t sure what her counts were. Just five days before she was at only 200, which means she shouldn’t go to church and be exposed to all of those kids. Rick and I thought hard about it and decided that since the sunbeams weren’t sitting up on the stage the whole time (they sat with their parents and then just went up for their turn to sing), that we felt ok about her going to participate. I am so glad we let her! It was such a sweet experience. The sunbeams were supposed to say what they were grateful for. Street said, “I’m grateful to play with my baby brother, Stade.” Then they put the microphone in front of Livvi, I was so nervous that she would get shy and scared and cover her face, but she proudly and loudly said, “I’m grateful for my sister cuz she makes beds for me when my legs hurt.” I couldn’t have been more proud! She was so brave and did such a great job. I started sobbing. I’m so grateful that my kids have such a great relationship and love each other so much. As she sang “I am a Child of God” and “Gethsemane”, I sobbed and sobbed. The spirit was so strong in that room!
The next day Liv’s nurse came to get her labs. We got the call a few hours later that not only did she make counts but her ANC had shot up so high! Yay!
Because her counts were so high she was ok to go to dance class that day! She hasn’t been able to go this year yet because her ANC has been too low. She was so excited when I told her she got to go! Its the first extracurricular anything that she has ever done and she felt so special! It was also nice that her sister was in her class and her aunt was her teacher, that way she wasn’t too nervous or scared to do something new 🙂
We went to clinic this morning and she did great! She got her Pentamidine and Vincristine and Methotrexate. The child life specialist brought her a doll and a bunch of the medical supplies that Liv is familiar with. Liv accessed the doll, drew her labs, gave her meds, and deaccessed her. It was amazing that she knew every little step and what supplies to use for each of them. It was adorable and sad all at the same time. I can’t believe she understands all of this at just four years old. After her meds we went down for her LP. Everything went great and she was ready to go once she woke up!
Interim Maintenance 2 is 8 weeks long. She gets Vincristine (chemo) and Methotrexate (chemo) every ten days. The Methotrexate escalates to a higher dose each time. She got a lumbar puncture today and will get another one before the round is over. She has to make counts each time before she gets her chemo (ANC of 750), so her nurse will come the day before each time to make sure it is high enough. THIS IS THE LAST ROUND OF TREATMENT BEFORE WE HIT MAINTENANCE!!! Maintenance is a year and 7 months long but so much less intense from what she has been doing. We are so excited!