Okay... a month late, but better late than never! When I last left you, I believe Becca was ready to head to the clinic at the end of July. They drew TONS of labs, many of which we've never heard, and thankfully, they all came back great. The immunology studies showed some levels still low, but that was to be expected with all she has been through with the bone marrow transplant. Today, Ethan took Becca to the day hospital at Children's for IVIG (her IgG level was a tad low last month, and this will give her a boost of immunoglobulin for the beginning of the school year), an EKG, and a check-up with Dr. Absalon. They pre-medicate her with Benadryl whenever she gets IVIG, and unfortunately, it hadn't worn off when they left the hospital today. When I talked with groggy Becca on the phone, she said, "Mommy, I really want to go to music class, but I'm SO tired and lazy!" I reassured her that she would have music class next week, but she told me that it was a LONG time away (she LOVES music class and Mrs. Maegly).
Again today, Becca's labs looked terrific! She's sporting an ANC in the upper 3,000s, which is a great start for a school year filled with bugs and viruses. Please join me in praying and crossing fingers that she stays healthy and out of the hospital!
We have surgery scheduled for September 24th, when Becca will have her port removed. Though it is surgery, and we are always nervous when our child is put under anesthesia, we feel it is huge that we are at the point for Becca's port to be able to come out. This means that she will not have to have it flushed (a needle poked in her chest) monthly!!! Her labs can be drawn from her arm; still a needle poke, but the needle is so much smaller, and with Emla cream, she might not even feel it. In addition, she will not need the oral antibiotic she takes three days a week once her port is removed. It may seem minor, but to have NO MEDICATIONS is a major victory for Becca being just a little over one year out of transplant. We can also move to clinic visits every other month instead of the monthly visits. This is a huge plus, since Becca doesn't want to miss school. That new normal is looking better each day...
The best news of the day was this afternoon when Mary (our care coordinator) called. I thought she was just going to go over Becca's labs with me, but she had word from Becca's donor! I had asked Mary on the phone if we could try to contact him now that it has been a year, and I had almost come to terms with the fact that maybe he wanted to remain anonymous. Today she told me that there was actually a message "out there" requesting that we contact him! It brought tears to my eyes thinking that we might actually be able to talk with or even meet this amazing young man who saved our child's life! I am beyond excited to thank him!!! So, we need to fill out a form, then he needs to fill out a form, and then I believe we will be able to get in touch with one another. I think something fell through the cracks when our BMT care coordinator left on maternity leave and did not return, so I'm glad that we can move forward in making this connection.
Enough about the "medical side" of our lives... Our family has been eeking every last minute out of the summer. Ethan and Lily ended up heading back to the UP with Ethan's parents a couple of days after our family returned, but Becca and I stayed so that she could attend summer school for math and I could start working. We had some fun Mommy/Becca time, but we were QUITE ready for Ethan and Lily to return. Since then, we've all been starting school. Becca is now in first grade, Lily is in the fourth grade, I am still blessed to work with elementary students in grades K-4, and Ethan is in his second semester at UC (starting in the nursing program).
I will post some pics another night this week, as this getting up early again is wiping me out and I'm ready for bed!