We traveled to Denver on Wednesday for the MIBG injection. While we were there, I requested to see a bone specialist. It was at that appointment we found out that My’isha’s radius bone in her forearm will not heal form the break until the cancer cells have been killed. Until then, her arm will need to stay in a cast. Luckily, they gave her a water-proof cast so she can still enjoy her favorite past time… swimming. She will have to get a new cast every 3-4 weeks until we see improvement in the stability of the disease and the bone. She is still little and young, so the outlook is good for her pretty little bones.
(Side note: it sucks when your child breaks a bone. If your anything like me, your feeling like a less than perfect parent and blaming yourself and thinking of what you should have done and what to do to prevent another broken bone. When I found out it was the cancer that was breaking down her bone causing the weakness which allowed for the break, I felt not so bad about myself. It’s all cancer’s fault!)
When we met with her new oncologist, Dr. Macy, we were excited to get information. I don’t think her daddy or I were really ready for the conversation we were about to have. We talked about a lot of things that we already knew, like neuroblastoma comes back stronger, different, and quick, and she is going to need treatment and a central line. There were all things we went in expecting to hear.
What we did not expect to hear were things like, think about her quality of life, it is time to start making goals of things that you want to do while My’isha is still here, and hospice. Those types of conversations are VERY hard on parents. I am sure you can imagine. We left worried and overwhelmed to say the least, but we did our best to remain positive.
The following day, Thursday, was CT scan, MIBG scan, and bone marrow biopsy. My mom accompanied My’isha and I this time. The process is something the 3 of us are very familiar with. The waiting for My’isha to drink the contrast, waiting for the nurse to call us back, waiting for the anesthesiatologist, waiting for the procedure, and waiting for My’isha to wake up for anesthesia. The waiting process is something we are quite accustomed to. This time things were a little different…
I remember My’isha’s initial diagnosis in March of 2013 in Oklahoma City like t was yesterday. I remember finally breaking down outside of the bone marrow biopsy room when we discovered her intolerance to Versed and sitting in the MIBG room and seeing my baby’s body light up with neuroblastoma. So when my request to be in the MIBG room this time was declined, of course I had some questions. And… of course I got the best guy to give me answers… NOT!
When I asked the nurses the day before and when we were getting checked in, all fingers pointed to the anesthesiologist. So I asked HIM why if my daughter is sedated would I not be able to be in the room. I was told it was policy. I was told I would be one more person in the room to worry about if anything went wrong. I was told it wouldn’t benefit my daughter at all and that it would only benefit me to be in there. So of course….the experience stated off in the wrong direction.
My mom and I enjoyed a nice lunch together in the cafeteria of the hospital. We took our time and wasted a good hour before we headed back. After another hour passed, I asked for an update. She was still in nuclear medicine where they do the MIBG, which is the longest test, and I figured they would be done with that soon, and then they will need to do her bone marror biopsy which would be pretty quick while she is sedated. It had to have been close to another hour that had passed before my mom went to ask again.
It was close to 3 hours that My’isha was sedated that day, so it makes sense why waking her up wasn’t so easy this time. Thankfully we had a very cool nurse who brought My’isha one of her favorite things of all time… a popsicle! He out it on her lips, but she didn’t budge the first couple of times. When we finally got a reaction from her, it was simply her tongue sticking out of her mouth searching for the popsicle! It was so cute! We continued trying to wake her with the popsicle and getting a great laugh out of her stubbornness… even in a sedated sleep. She refused to wake up, but would literally kick her legs and fuss if we took the popsicle away.
My’isha finally woke up enough for us to get her out and to the car and home to her brothers and daddy. It was close to the end of the day by the time we got out of there, so I figured I wouldn’t received a phone call with results until the following day. So…. the waiting game begins….
To be continued….