Ace had a great appointment with Dr. McClain on Friday. We really liked him. He thoroughly examined Ace and was incredibly reassuring. They did blood work, a full skeletal x-ray survey, and a chest x-ray on Friday. The blood work all came back good. His liver enzymes are slightly elevated at a 67 and the high range that they normally like to see is a 60. Dr. McClain said he is not concerned with this # as it is not alarmingly high and we will watch it. There were no lesions found on his bones in the skeletal survey which is VERY good news. There was a "shady" area on the chest x-ray, but Dr. McClain said that he is not concerned about this area at this time. He thinks it was likely an area of blood vessels. He said that it is hard to get a good, clear read on a baby Ace's age. Ace will have to have a head CT as well as an ultrasound to check his liver, spleen and kidneys. They are going to call us the first part of this week to let us know when that will take place. Ace will have to be sedated for the CT, so it has to be scheduled with an anesthesiologist. Dr. McClain does feel that Ace will need some form of chemotherapy. Based upon his examination of Ace and the test results on Friday, he feels that we have a very good shot at the LCH being skin only at this time. If the CT and ultrasound come back clear, he said that Ace should be able to take a form of chemotherapy that is given orally. It would be given by us, at home for a period of 6 months to a year. If they find other areas affected in the CT or ultrasound then he would need to have chemotherapy intravenously and would also receive steroids orally. We feel extremely positive after our meeting with Dr. McClain and remain hopeful that the skin is the only organ that the LCH is affecting.
Dr. McClain was very informative. We had a long list of questions and concerns and he answered all of them without hesitation. One of the major questions that we had was regarding when this disease can become fatal. Dr. McClain has been working at TX Children's Cancer Center treating LCH patients for 27 years. He said that in that time period, he has lost 4 patients to this disease. These cases were all many years ago. He explained that there are currently 4 different chemotherapy/treatment regimes that they use and that all patients have responded to one of these regimes in recent years. This was so comforting. We had also read that patients who were diagnosed with LCH before the age of 1 were more likely to have a serious form/multi-system form of the disease. Dr. McClain stated that recent studies had confirmed that this is not the case. Dr. McClain explained that if the LCH is presenting as skin only at this time in Ace, the chemotherapy drug would hopefully "head off" the disease from showing up elsewhere. He explained that in cases where it presents as skin only, it shows up elsewhere in the body 40% of the time within the first year. By treating with chemotherapy, we are hoping to stop this.
We could not be more thankful for the results of the tests on Friday. We feel so comfortable with Dr. McClain. He spent a great amount of time with us, and encouraged us when we left to contact him should we have any questions or concerns at any time. We have read so many positive things about Dr. McClain from people who are patients and those who are not patients that have contacted him for information. Treating LCH is obviously his passion and you can tell that he truly cares about his patients. Friday was a very emotional and hard day for all of us to say the least. Ace was the youngest patient in the center at the time we were there. We were on the 14th floor for our appointment and lab work. We went down to the radiology department on the 8th floor for his x-rays. When we got back on the elevator to go back up to the 14th floor after the x-ray there was a doctor on the elevator that asked us which floor we were going to so he could push the floor button. When Toby replied "14", he just shook his head and said "Oh man, not for that little guy. I am so sorry." Obviously, floor 14 is not where you want to go. But, with that being said, we are so thankful that Dr. McClain and this hospital are so close to us. We know that Ace is going to receive great care and we feel really hopeful that we will be able to be through all of this before Ace is old enough to remember any of it. Dr. McClain was actually waiting for us when we got off the elevator after the x-rays and went over all of the results with us from the tests. I know I stated in my last post how truly thankful we are for the care that Ace has received, but I just have to say again how great everyone has been. Dr. McClain was incredibly attentive to Ace and to us. Dr. Anderson, the dermatologist that diagnosed Ace called us yesterday afternoon(on a Saturday) to check on Ace and to see how the appointment went. Dr. Boecker and her staff are always great with Ace and Tinsley. We truly feel that our kids could not be in better hands.
We really want to thank everyone again for keeping Ace in their prayers. We know how fortunate we are to have so many people who love our little boy.
Up and ready to go Friday morning. Thursday night was Ace's first night in a hotel. We did not have a very restful night. Ace did not go to sleep until around 11. He woke up at 1:15 and went back to sleep around 2:45. At 3:39, the clock alarm went off. We think the cleaning lady may have accidentally hit it and turned it on as neither of us had messed with it. The alarm woke Ace up and he was not happy. He went back to sleep after a few minutes, but was back up by 6. I think he was anxious for his appointment. :-)
Worn out after blood work. It took 3 nurses to draw blood. They had trouble finding a vein. The first vein clotted really quickly, so they had to poke him again. He was not happy. He gave those nurses heck! He is so strong. We are so thankful that he feels so good.
X-rays
Worn out after all of the tests.
Thanks again for checking in on us and keeping Ace in your prayers!
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