Just realized it’s been two weeks since I have updated the page. Man time has flown with a flurry of activity and hurry up and waits in the last couple of weeks. Since my last update we ended up back in the hospital on Wednesday the 16th due to fever and low white blood counts. Audrey’s ANC was at 0 until Monday the 21st when it jumped to 260. We had to be at 500 to be released and eating. The last round of chemo had caused a severe case of mucositis. Because chemo attacks the dividing cells in the body the mucus lining of the body is also attacked which causes serve pain and ulcers throughout the entire tract. For two days she wouldn’t even swallow her own spit. She ended up losing a bit of weight during this time as she wouldn’t eat or drink. Finally Tuesday her counts came up to over 500 and all she had to do was eat and drink to leave. Once we told her that she tried a lot harder and we were released at about 1 PM on Tuesday the 22nd.
Because of the hospitalization Melissa and Audrey missed their flight on Sunday the 20th to Houston and we missed our first appointment at MD Anderson on the 21st. We got everything rescheduled for the following Monday the 28th but knew once we got released we wanted to get to Houston as quickly as possible.
Once we got home on Tuesday Melissa and I started packing the van and getting everything ready to leave. We arrived home at about 2 PM from the Hospital and at 5:30 PM Cole and I were on the road. We stopped by and picked up our friend Randy who helped me drive 18 hours straight through to Houston. Cole was a trooper through it all he never complained and was mostly upbeat through the entire trip. Once we arrived in Houston we checked into a hotel by the airport where I got caught up on work emails and took a few short naps before picking Melissa and Audrey up at the airport.
Friday was our first appointment and experience with the behemoth that is MD Anderson. I was talking to our case manager down here and she said she was told this is the largest grouping of medical complexes.
in the world. If there is a larger one I would be surprised. We saw our Oncologist who was very nice and super informative. We are very excited to have him review her case and let us know what he thinks as well. It was a super busy day. They wanted to get blood counts but since we hadn’t been accessed yet at MD Anderson we had to go for a chest x-ray on the 3rd floor then get accessed on the 8th floor before going back to the 7th floor to get blood drawn and deaccessed.
While we were at the Oncologist we got a call from the Ronald McDonald house that they had a room ready for us which was great since we had been staying in hotels the 2 nights before.
Monday we went to our first consultation with the proton therapy team and were able to get answer for all the questions we have been waiting to ask for months. In the end we got the answer we expected which is there will be diminished IQ which means slowed learning which will just require adjustments when going through school. As well as spinal growth issues which they will watch and try and help with growth hormones if needed. Following the Proton visit on Monday we say the ophthalmologist to get a baseline vision test since radiation can effect vision as well.
Tuesday we had a meeting with the audiologist to test hearing and the endocrinologist to get benchmarks on thyroid levels before radiation.
Wednesday we had a first radiation simulation where they start to get the reading for the radiation plan as well as make her mask that will hold here still while getting the treatment. Here is a picture before bed with Audrey’s lines on her stomach and I asked her to give me a cheesy grin and thumbs up. This is what I got. 🙂
That brings us to today where we had our CT Scan that started with getting accessed at 7:00 AM then waiting for the CT appointment at 10:00 and finally getting done about 1:30 with the scan and waking up from sedation around 2:30. What we thought was going to be a short day at the hospital ended up taking a lot longer. Seems that we would be used to that by not by not what we expected today.
Tomorrow we just have a checkup with the oncologist then think we will take the kids to Herman Park which is very close to where we are staying. Staying in a single room all together is going to take some getting used to and some perseverance from all of us.