Day +4087 post transplant Day +3785 off therapy

June 10, 2014

Today was Taylor’s yearly check up. I’ll admit I was nervous. Not nervous because he had symptoms of some sort, just the omg, my kid has an oncology apt nervous! Even, almost 12 years later, it’s hard to believe that we’ve been through what all we have.
Add to the nerves a new doctor and you have a true panic situation. It isn’t that I don’t trust the doctors it’s just that your primary doctor is family. He knew Taylor, he knew his quirks, knew his body, every scar, every breathing issue, etc. he knew me! He knew when to calm me, when to use certain words! Today he wasn’t there! For 12 years Dr. Berkow has traveled this journey with us, but today we got a new dr. Sad day! However, that being said, I really liked our new dr. Dr. Bremich-Stoltz was very attentive, very thorough, she listened and talked to Taylor like an adult. She had read the chart (I knew she would read the chart) but she had studied it. She didn’t have it with her, but she talked like she knew my child. She knew his quirks, his body, she found his scars and asked what they were from. She put us all at ease and we are pleased!!

The best thing she did was go over his sheet that lists all his treatments. Want to hear the best news ever???? Most of the drugs that cause a second malignancy do so in the first 10 years, so he is at the end of that major worry. Yes, it can happen, but the chances are less and less. They are looking into testing for next year when we return. He will be 14 and it will be time to start testing the sex hormones etc. that makes me nervous as it’s another blow if we are told he can’t have children, but again, we can deal with that. He is a tad worried about the fact that the study requires a colonoscopy 10 yrs after radiation, but he’s so young. They will discuss that with the TLC (taking on life after cancer) doctor and see if he’ll do that test next year.

Taylor had already had an echo cardio gram this morning and lab work. He wasn’t happy about the labs being from his hand rather than arm, but he did it! He was 91 pounds, still on the small size, but growing. Dr. Bemrich didn’t see a need to see Dr. Latiff again since we chose not to do growth hormone shots. She can check the hormone levels and of more needs to be done, send is back to endocrinology.

After a great check up and schedule for next year, we headed to the audiology clinic for a hearing test. The test is unchanged. Still has very high frequency hearing loss, but none in the normal range. He has always been tested every other year, but she wants to start it yearly now. During puberty boys tend to lose hearing, so we need to monitor that things don’t get worse.

Well, that did it for our day! Glad it went well, but glad it’s over! We go back on june 9th 2015.