Today has been one heck of a day.
Clinic days are always pretty crazy but today was an extra crazy clinic visit because we had three separate meetings scheduled for our trip to Vanderbilt. I got up earlier than planned when Doofus stood up in his crib and started yelling, "Mama". As soon as I got him out of the bed he headed to the kitchen, grabbed a chair, and stood on it in front of the open refrigerator. When I found him, he was pointing and hollering, "That!" I picked him up and said, "What is it that you need?" He grabbed the maple syrup. He wanted to drink a cup of maple syrup. After I said, "No, can I fix you some milk instead?" the wailing began. I was barely able to get me and Hunter out the door on time to make it to our first appointment in the clinic. He remembered his numbing cream for the insides of his elbows that he must have in order to make blood draws go more smoothly. I'm so glad he pays such close attention to what is required for his illness (like scraping his tongue, washing and sanitizing his hands, not touching things that might be covered in germs, taking his meds, and, numbing his arms). I can't tell you how often I've forgotten things but he's remembered them.
Once we were finally on our way, we got stuck in traffic. For about 15-20 minutes. Making us, of course, 15-20 minutes late. We adjusted everything with blood draws and touching base with the head nurse and were on our way to our first stop... the family consultation room for a follow up on a longitudinal study being conducted by the psych department. Michael and I had filled out a huge packet of paperwork back last summer right after Hunter's diagnosis. Now we were participating in a part of the study that evaluated the way that parents communicate with their child who is undergoing treatment for a cancer diagnosis.
First we had to sit on either side of a divider and we had to use communication so that Hunter could use puzzle pieces to create a picture that looked exactly like the one that was put in front of me. The task was super easy and we rocked it. We had five minutes and we were being videotaped. After he made his picture, we chatted about tomorrow and had a few laughs. It was fun. After that task was complete, we were asked to just chat for fifteen minutes about our experience with cancer. I was given some questions to help keep our conversation moving. We didn't have any trouble talking for fifteen minutes. This experience prompted me to talk to Hunter about not signing something until you've read over it (I read his agreement form to him and he signed it), about how we were participating in the study because it might help some children in the future who will be diagnosed with cancer, and about how when I was in college I spent a good chunk of my time studying smokers and their unrealistic optimism regarding how likely they were to develop certain smoking related illnesses.
After the experiment was finished, we waited for a while and then we met with some members of the psychiatric team (unrelated to the study). One of the residents stayed with Hunter in the exam room while the other resident took me to the waiting room for a chat. There were a lot of things talked about... like family psychiatric history, OCD, SPD, PPD, Asperger's, depression, anxiety. Tons of things a mom likes to talk about when discussing her child (insert sarcasm). But they came back with referrals, a game plan and most of all, validation. There were tears (on my part) and I declared that I felt like a ton of bricks had been removed from my back. I no longer felt like I was alone in fighting this battle.
Our meeting with the transplant team went well. We drop two meds and we continue tapering cyclosporin. We should be off of it completely by July 29th. And in two weeks we'll receive our hydrocortisone tapering schedule. Hydrocort does NOT treat Graft Vs. Host Disease so we know that it is not brewing back up (at least not gastrointestinal-wise) and that the vomiting and lack of appetite were in fact due to his adrenals being whacked out. This is a huge relief to me... for now, ya know?
After our clinic visit, we went downstairs to the gift shop so that Hunter could use the gift cards he earned during the experiment. He chose a cool Klutz Kit called Invasion Bristlebots. He also chose a gift for his sister. She has been saying that she'd like a pink poodle. So that's what he got for her. The staff wrapped it up for her so beautifully and he was super proud of his special gift for his sister.
Michael had arranged to have Ronin delivered to gymnastics by her grandmother in order to buy me and Hunter enough time to also do some grocery shopping while we were in Nashville. We only have one working vehicle right now. The last time Hunter and I went to Trader Joe's after clinic, he threw up the moment we stepped inside. I wasn't prepared for what happened while we did our shopping. He got his own shopping cart and started shopping... which is great in a way because I'm thrilled that he's feeling well enough to do this and that he's got an appetite. But the problem is that we are broke. And the government has made some changes to our funding and so we didn't have much money to be blowing on the types of things he was choosing... like new desserts and more frozen pizzas (when we already had some). Had I known that this was what he was planning to do when we went shopping, I would have had a bit of a talk with him before hand... something like, "Hey, you can choose three special treat items while we are shopping and anything else you will need to pay for" or "You can pick six dollars worth of special food in addition to the ingredients for your snack mix." But I didn't have that talk. I just stood by and held my breath while he put things in his cart. He ended up not getting too terribly much that I wouldn't have purchased myself. But it did teach me a lesson and as much as I hated to, I had to tell Hunter that while we were in Whole Foods I would need to agree to anything he wanted to put in his cart. He took it fine but for some reason it really bothered me to have to say this. I hate having to say no to him when it means saying no to something that seems to be giving him such happiness and contentment. Such a tough spot to be in.
While at Whole Foods, I am pretty sure that I saw that lawyer guy who got Andrea Zuckerman pregnant and then married her. Who knew that he was hanging out in Nashville, TN, shopping at Whole Foods and holding white babies?
All in all, Hunter and I had a lovely time together. I am constantly amazed by him and how far he has come in the past 10 months. He has more energy than I do these days. And his sense of humor is returning. I'm just so darned thankful.