Two months have passed since our last update. Progress is being made for Paige. We have a few snippets of good news to share with you.

Back on March 20, Paige’s blood labs revealed her platelet count was 80,000, crossing over the lower limit of the 75,000 threshold for the trial study. It had been 21 months, since June 23, 2022, since Paige’s platelets were above 75k. We were super excited to finally see her blood reach this mark. 

Just a few days after that, in late March, we were notified by Paige’s Oncologist that she had been approved for IVIG (intravenous Immune Globulin therapy) to treat her Thrombocytopenia. IVIG had been denied back in early February when the first oder was made. After several phone calls from the Oncologist and then my persistence in calling and conversing with a Highmark “customer care advocate”, the insurance approval was worked out. Paige received this treatment last Friday, April 12. It was a full day at Hopkins’ Pediatric Oncology Clinic. Paige received 1000 ml of IVIG in 3.5 hours. We were told by some of the staff that this bag can cost around $100,000. It was not even  released by the Hopkins’ pharmacy to the Ped. Onc. Clinic until they knew for certain that Paige was ready to receive it. 

Because Paige had not received this therapy before, there was required monitoring throughout the treatment. Paige slept through most of the treatment, partly because they had loaded her up with Benadryl through her IV shortly before it began. The administration went smoothly and Paige did not have any negative or allergic reactions while at Hopkins, except for a headache.

We arrived back home around 7:30 Friday evening. Paige had a continuing headache on the way home and by 8:30 was fully asleep. On Saturday morning, she awoke with a very severe headache, of migraine proportions. She continued to sleep, waking up occasionally when we wanted to know how she was feeling. Her headache was only getting worse as the day went on. At the encouragement of a friend in our neighborhood who is an EMT, we called the Oncologist on Saturday evening and were advised to continue administering extra-strength Tylenol as well as Ibuprofen, rotating these agents every 3 hours. Paige continued in this state through Sunday and into Monday. She slept for over 65 hours!! 

On Monday afternoon, Paige finally started to “come alive” and began talking and functioning as normal. She felt well enough to make herself some afternoon pancakes, the first thing she had eaten since Friday. Paige had missed school on Friday and Monday due to the treatment and the headache. Her main concern, however, was that she was planning to play her viola in a recital for Chamber Ensembles at Messiah on Monday evening. She was given permission to reschedule, if necessary. However, she was willing to move forward and try to keep this commitment. She had been practicing a Brahm’s piece with her trio (a vocalist and a pianist) since the beginning of the semester. Paige performed in the recital Monday evening and did very well. It was truly amazing to see such a quick turnaround from her condition over the weekend. Her commitments to her trio and meeting this requirement were very admirable to see. (Pictures and part of recital performance attached)

Yesterday, Paige had blood labs drawn and they came back this morning showing improvement. Her platelets had dropped to 72k last Friday at Hopkins, with the labs drawn before treatment. Today, her platelets are up to 81,000. 

We do not yet know if another IVIG will be considered. We also do not know anything about a timeline for when Paige might be able to begin the trial study through Baylor University and Texas Children’s Hospital. This is a MEK-1 inhibitor trial using Cobinetinib for CNS LCH tumor. Paige can’t begin due to the limit of persistent Thrombocytopenia, of which low platelets are the indicating marker.

Lastly, on another note, Paige has scheduled her classes for next fall at Messiah. She has 2 semesters to go after this spring, Lord willing.

Your continued prayers, expressions of support, and concern for Paige are always appreciated. 

Always Grateful,
Dan