Christmas did happen in the middle of Memphis trip 1 and Memphis trip 2 BUT I'm too lazy to blog about it right now. Just know it was wonderful to be together, everyone ate too much, got spoiled with mountains of toys, games and goodies, and I was very happy to get everyone back to school. We had one week of 'normal' routine and then Matt and I were off again. It was barely enough time to get caught up on the laundry. :)
Now we are back in Memphis and it has been crazy! First, we had a bit of a fiasco with travel arrangments. They changed the dates they needed us here and our previous arrangement fell through. Then it changed AGAIN and turned our travel into a bit of a crisis. Basically St. Jude's requires 14 days advance notice for travel arrangements and we didn't have that. They had to go UPSTAIRS for special approval (insert JAWS theme music here).
Matt and I arrived on Thursday evening, as scheduled. He was fine on the airplane ride, chatting up the 2 ladies sitting next to him on the plane (since our reservations were made so late, I ended up sitting in front of him instead of next to him). He seemed quite tired when we arrived and I knew he was dehydrated, so I was really encouraging fluids. He was reluctant to drink, which often happens when he gets dehydrated and his sodium climbs higher than it should. After we ate a quick snack, I gave him his meds, including a stress dose of his hydro cortisone since he seemed tired and overwhelmed and just a little 'off'. After taking his meds, he promptly vomited. It still didn't seem like he was sick, just that he was tired and I was forcing him to drink too much. I gave him another stress dose of hydro cortisone and put him to bed.
Friday was a big day, test-wise, and turned into a bigger day as it progressed. We arrived early to have his first set of labs drawn. This study is called a Pharmacokinetics Study. It measures the amount of chemotherapy in the blood before taking the drug and then again 1 hour, 2 hours, 4 hours, and 8 hours after taking the drug. Matt is in a phase 1 trial and phase 1 trials are all about correct dosing and what side effects occur with the drug. After we began the test, Matt started seeming a little strange. He was complaining of an earache and he was hungry since he had to fast for 2 hours before chemo and 1 hour after. We finally got him a bowl of cereal after the 2nd blood draw and then went for our clinic visit. In clinic, Matt began really, really acting poorly. He said his ear REALLY was hurting and he began to cry - very unlike him. The clinic doctors and nurses kicked into gear and began doing tests. Lots and lots of tests. While we waited for the results, they decided to start Rocephin via IV. He laid down on the bed and as soon as they started the antibiotic, he began vomiting. Again, he didn't seem 'sick', but something was very wrong.
He was in adrenal crisis.
When you or I are in a stressful situation or we are ill, our body makes adrenalin. We make a little bit every day, but in times of stress our bodies make a lot. Matt's body doesn't make ANY and it is the most life threatening, on a day to day basis, thing we deal with. Between the travel and subsequent dehydration and the illness, it put him over the edge. Thankfully, we were in the hospital at the time. They gave him an IV stress dose of cortisol and decided to admit him. They wanted to watch him closely. They also wanted to get the results back from all the tests. Because of his symptoms (vomiting, diarrhea, sore throat, cough, earache) they put him in a 'strict isolation' room. Every time anyone came into the room they had to put on a full gown, mask and gloves. Matt was not allowed to walk around the unit, and I had to scrub my hands in a special sink right outside his room whenever I walked out.
Hilariously, every single test came back NEGATIVE. The only diagnoses they made was of an ear infection. Matt is probably the first kid in the universe to be hospitalized - in an isolation room, no less - for an ear infection. The other symptoms we saw were symptoms of either the chemotherapy or the adrenal crisis, or both. Being the amazing bounce-backer than he is, the next morning Matt seemed great. His labs were improving (especially his sodium because we were giving him IV fluids) and they let him out of the hospital that afternoon.
On Sunday, we were pretty tired so we took it easy. We watched a few movies and took a nap. We did walk over to the hospital twice to draw labs and make sure that his sodium was still coming down or stabilizing.
Monday we were supposed to go home. We had a quick appointment for labs, and a quick visit to clinic and then our flight was scheduled to leave that evening. When we got to clinic, Dr.Wetmore was still a little perplexed by some of Matt's labs. His lab work, during the adrenal crisis and afterward, were 'out of range' for the study that Matt is on. The study doctor wanted to pull him off of the study. I do NOT want him off the study. Of course, I don't want him to do anything unsafe, but we only have one more month until we find out if it is working! I've been anxious to get him on a VEGF receptor for a long long time. Dr.Wetmore (and I agree) felt like the strange labs were due to the adrenal crisis and illness. She wanted to do a few more tests to figure out if we can get any more answers as to why his labs were 'off'. Specifically, he had high sodium (easily explained with his DI), high Uric Acid (???They usually only see this in people with Gout???), protein in his urine, and his liver enzymes were off. She suspected kidney stones. So, off we went for a kidney u/s and a 24 hour urinalysis.
Today, we got great news! All of the labs were back to normal. The protein in his urine is almost gone. He does not have kidney stones. AND Dr. Wetmore talked the study doctor into allowing Matt to continue the chemotherapy. He had the first dose of course 2 tonight. I am sooooo anxious for next month!
Second great thing: Dr.Wetmore totally went to bat for us regarding growth hormone. I've posted enough times about our battles with doctors over this one, that you probably already know doctors won't prescribe it because Matt still has a tumor. BUT, Matt will always have a tumor and he NEEDS growth hormone. You and I make growth hormone and it makes us feel great. Everything hinges on Matt receiving growth hormone. Dr.Wetmore was shocked and dismayed that Matt is not on GH. She wants him on GH and testosterone. She said she couldn't find a single study that showed a correlation between GH and tumor growth. She said, "I've spent my 20 year career in a lab trying to figure out ways to make astrocytes grow or stop growing. Growth Hormone does NOT affect astrocyte growth)". She is prescribing growth hormone for Matt. We will get him a little taller and then begin testosterone. Once testosterone is started, puberty will begin and his growth plates will begin to close.
All in all, this has been a very adventure filled trip to Memphis. I am overwhelmingly pleased with how this trip has gone and, still, that we have chosen to have Matt treated at St. Jude Children's Research Hospital.
We will go home tomorrow - and I will start all over again on the laundry. :)