Monday, May 17

Chemo Round 1, Day 3

The neurosurgeon checked in with us this morning, and I asked him about Collin's eyes turning in. Since all of the recent scans and other tests show no increase in cranial pressure, he feels the cause is most likely inflammation of the sixth nerve, which should decrease over time. Collin had physical and occupational therapy again. Physical therapy is challenging for him, and he spends the whole session crying; while it is hard to see him go through it, I know how important it is, so I swallow my tears and cheer him on. He tolerated OT very well today, with very little fussing. 

I became very annoyed at the respiratory therapist who came this morning to give Collin his breathing treatment. I was washing my hands when she came in the room, and I told her I'd be done in a minute and would get out the inhaler for her. She saw where it was and got it out herself, and after taking a quick listen to him with a stethoscope, she just put the mask over his face and gave him his puffs. Collin was laying in his bed facing the wall, so he couldn't see who was there. He got very upset and fought the treatment. He probably would have done so no matter what, but I like to tell him who is going to be doing what to him so he knows what to expect. I figured this therapist wouldn't walk in to a five year old's room and not tell them what to expect, so it really angered me that she would treat Collin that way, and I told her next time I would appreciate her letting me tell him what she was going to do before she touched him. Tonight a different respiratory therapist came to do his treatment, and I explained who was there and what they would do. He fought the breathing treatment a whole lot less.

The oncologist had talked about putting me in touch with a family who had been through chemo and was on the other side of things now. Today a family that she had in mind came into the outpatient clinic, so I got the chance to meet them. The little girl was diagnosed at the age of four months; she's now fourteen months, and healthy, with very few long term side effects from the chemo. Her hair (and eyelashes!) are growing back, and the scars from her tumor removal, shunt placement, and Broviac catheter are hardly noticeable. Her mother told me that the first round of chemo is the hardest, but not to lose hope because it will get better.

Today's chemo drug was a very high dose of Methotrexate given via IV over four hours. The common side effects of the Methotrexate include mouth sores, nausea, vomiting, loss of appetite, and abnormal liver function tests. The kidneys are watched very closely, and urine is checked for acidity and presence of blood. Twenty four hours after the Methotrexate is given, a vitamin rescue called Leucovorin is given to stop the ongoing effects of the drug. Then blood tests will tell if the Methotrexate is gone from Collin's system.  

The oncologist stopped in tonight and was very pleased with how Collin looked and how he had tolerated the chemo so far, but she still warned that the hardest part is still to come. Later this evening Collin's pediatrician stopped by, and spent about an hour visiting with us. He was very pleased to see how Colin looked now compared to two weeks ago when he saw him in the PICU. Despite my little frustrations through the day, today left me feeling positive and hopeful.