Thursday Clinic Visit - Maintenance Round 18

Today's clinic visit consisted of the following:
1) Port access
2) a blood draw
3) Zofran (anti-nausea - increased dose because she had vomiting after the last lumbar puncture. She is now at the maximum dose for her weight)
4) Lumbar Puncture with Methotrexate, Cytarabine & Hydrocortisone (Intrathecal Chemotherapy)
5) Vincristine (Chemo)

Katie was a VERY brave girl today while having her port accessed. Over the past few accessastions, I watched her face while the needle pierced her skin and it didn't appear to me as if the level of screaming changed or even if the look in her eye reflected that she just had a needle pierce her skin. There was no difference, which led me to believe that she really didn't feel it. So, I started asking her whether it hurt or not and she said, "no". When I asked her why the screaming and yelling, she replied, "it might hurt". We have had this same round of questioning after the past 3 or 4 times she has had her port accessed. This time, I figured that maybe it was time to talk to her BEFORE we go to the clinic. Today, I told her to concentrate on the fact that it wasn't going to hurt and to just blow out really hard instead of screaming. I didn't actually expect that she would do that, but SHE DID! And after it was over, she again said that it didn't hurt. This was the least amount of screaming we have heard since we started this whole ordeal. It was nice, for once, not to hear her screaming bloody murder during her port access.

While waiting for her blood counts to come back, we were in the infusion room. Katie played with childlife while Mike chatted with whoever passed by. I went upstairs to the 5th floor to visit another family that we know whose daughter has been inpatient for 2 weeks.

Katie's counts were again high enough for us to start the next cycle. She had a lumbar puncture today, but Dr. Keuker was not there to administer the procedure. I REALLY hate it when he is not there for these. I think this is only the 2nd (or 3rd) time that she has had one without him and it just makes me really nervous. I know the other doctors are completely capable, but I just hate it. Her procedure today was performed by boyfriend #4 - Dr. Grossman. This time, they increased her dose of Zofran to the maximum dose for her weight in hopes of eliminating the nausea and vomiting after the procedure. They also had to give her more sedative because, after her normal dose, we all agreed that she was not as "loopy" as she normally is. Even with the increased dose, she was still not as out of it as normal. This was even more obvious when the needles were going into her spine and she was feeling quite a bit of it. She was blowing like crazy, but still not a scream or a whimper. After the procedure was over, I kept thinking about how there is only one more lumbar puncture left. I laid my head on hers and began to cry. I said, "You are so brave. Only one more, baby. I love you." Once she was able to sit up (45 minutes after her procedure), she was nauseous and we sat still with a bucket on her lap for a while (20-30 minutes), but there was never any vomiting.

This cycle will consist of the following:
Vincristine - Day 1 (same dose as previous cycles)
Methotrexate (oral at home chemo) - Days 8 & 15 (same dose as the last cycle)
6-mercapturine (oral at home chemo) - Days 1-14 (same dose as the last cycle)
Dexamethasone (oral at home steroid)- Days 1-5 (same dose as the last cycle)

Next planned clinic visit will be in three weeks, April 15.

The countdown is seriously on over here...there are only 9 clinic visits, ONE lumbar puncture and 1 bone marrow test left!!!