Breakdown

We saw Dr. Appel on Tuesday and asked about Methotrexate. At the time, they were having meetings on how to best “conserve” the drug. She admitted he is a candidate to get bumped if the supply does dwindle more, but thought that we could get one more round in. What they have explained to me is that are conserving and not rationing, meaning they will make sure kids that need the drug are admitted on the same day based on their prescribed amounts so that nothing in a vile is wasted – basically a logistical issue for them. They aren’t withholding it from any kid at this time. They think the media has blown it up a little but think that might help in getting the supply started again (with a much bigger price tag).

The new treatment plan is for Trip to have another skeletal survey in two weeks before his next dose is due to see if the lesions in his bones are improving any. (She wants to hold off on the MRI and the PET due to the amount of radiation exposure unless it is needed.) If the bones show improvement we will continue another two rounds of Methotrexate and then have the PET and MRI. If there are new lesions on the bones or growth in the existing lesions, we will go immediately to our toxic friend, Clofarabine.

This has been an extremely challenging week for our family outside of Trip’s disease and related medical issues. We had to make a gut-wrenching decision that ultimately broke my heart. It took my focus off of Trip and put me in a place where I had to call for backup. We were in the hospital yesterday when I called my mom in panic mode. Within 7 hours of that phone call she was hugging me and reminding me what is good, true and important in life. She was making my son happy and giving me comfort. What greater blessing is there in life than having loving, steadfast family members?

My lesson for the week is to keep my eye on the ball.

While Trip was hooked up receiving chemo yesterday and I was having my breakdown, he grabbed my hand, kissed it and hugged me. He said, “Mom, I’m going to do everything I can to take care of you.” He gives me peace, comfort and hope even when I should be giving it to him. He’s a beautiful child inside and out and I’ll be forever grateful that he is mine.

We will hopefully get to go home tomorrow if the Methotrexate is out of his system. His birthday is Tuesday, so I’m looking forward to celebrating his 4 years of life and spoiling him rotten just because I can. I’m so thankful we will be at home and together on his birthday.