Pray for KK

Walking with Nurse Barbara post-surgery

KK began experiencing headaches, stiff neck, torticollis, lack of appetite, nausea over 9 weeks ago and double vision on April 4.  We went to the ER on April 8 where they discovered that these were all caused by a grade 4 glioblastoma multiforme tumor that KK has named “Charlie”. It was deep inside the left side of her brain and there was also a large amount of fluid trapped near it.

KK was scheduled for a tumor excision on April 10. A hard conversation we had in the wee hours of the morning before surgery will give you a glimpse into my daughter's heart: "If I leave this earth today, Jesus will be waiting to give me a hug; if I don't, you will give me a hug." The procedure began with a trip to the PACU at 10:15am and ended back in the PICU around 9pm. KK was, in the words of nurse Peter, “remarkable”. She had no trouble coming out of anesthesia. However, we had trouble keeping her pain levels down the first day after surgery because KK has such a high pain tolerance and wouldn’t tell us until it was a 5 or 7 out of 10 (which would be off the charts for me).

KK had a follow-up MRI on April 11 to see how much of “Charlie” remained and to find out if the fluid would be able to drain on its own. The results showed that about 2-3 cm of residue was left and the fluid was not draining. So, KK had a second surgery on April 14 to have a shunt placed to drain the fluid. KK had a very difficult time coming out of anesthesia this time (a different anesthesia was used that was supposed to have less side-effects, but instead she experienced severe nausea and vomitting). A follow-up CT scan and shunt imaging revealed that it was working properly and the fluid was draining.

Through it all, KK has been amazing. I am so proud of her! Everyone loved her; she was so endearing. As she was vomiting after the shunt surgery, she said to the nurse, “Thank you for taking care of me.” She was well spoken and asked relevant questions whenever anyone asked if we had questions. She understands very well all that has happened and what is ahead for us. KK tires easily right now. She has a walker to help her with balance while walking and is wearing an eye patch to help with double vision. She covers her stronger eye when she is sitting and her weaker eye when she is moving.

I have a friend that is a spinal surgeon that contacted the Chief of Neurosurgery Emeritus at Boston Children’s Hospital about KK’s case. The two of them then connected with the Director of Pediatric Neuro-Oncology at Dana Farber who wants to fast track us. Unfortunately, UMass did not get her scans and records uploaded in time for their weekly meeting where they review new cases on Thursday. So we will need to wait another week before the group will meet again. Waiting is not what anyone wants to do with KK’s situation. Pray that God will move mountains to somehow get her case “on the docket” sooner than next Thursday. I don’t know for sure what Dana Farber’s plan will be to eradicate what is left of “Charlie”, but it is most likely a combination of directed radiation and a chemo pill.

Please pray for God to bring complete healing to my little girl.