On Monday at 5pm, Keith, Josiah, Jaden and I headed to Chicago for Keith's 6 month post transplant check up with Dr. Burt. He had a 6:45am MRI the next morning, so we stayed Monday night to be sure we made it on time! We stayed in our same hotel which is kiddy-corner from the medical offices where all Keith's appointments were, and also across the street from a parking garage where we could get discounted parking because we were there for medical purposes. And because they have really good coffee and breakfast. :)
We made it on time and the MRI went really well. Keith also had to have some blood work done, but then we were free the rest of the day. The boys enjoyed the pool this time, it is at the top of the hotel and open to the sky. So this winter when we were there it was not open, it was filled with snow.
After lunch we headed to the Museum of Science and Industry where we found out Keith is still not ready to keep up with us walking/exploring. He sat on a bench and waited for us. So me and the boys quickly saw what we wanted to see and do. Hopefully by his next check-up he will be feeling more up to sight-seeing.
The boys are being buckled in the flight simulator at the Museum.
On Wednesday, at 10:30, we met with neurologist Dr. Balabanov, who assists Dr. Burt in giving another opinion of the patient. Our initial appointment with him in July 2015 did not go very well, so we were a little skeptical of our visit this time. But he was amazing to talk to! He walked in and said, "look at you with all that hair, and a tan!" We chatted for about 30 minutes and he explained everything very well. Keith asked about working too hard and if that could be damaging what he has already gained since he felt like he had regressed in July. Dr. B. said there is no way you can hurt what you have already gained. Whew! He explained that because you are working so hard you are sending signals rapidly through damaged nerve tunnels and after awhile those tunnels get tired and shut off, thus you experience the set back. He said you need to stay within your means of ability, once you push yourself outside that circle by working too hard, you will notice some of your old symptoms coming back. So Keith has to really keep pacing himself yet, which is difficult when you are a farming especially in the summer. But that circle should start to expand as Keith heals.
Dr. B. would also like Keith to start Yoga. HAHAHAHAHAHA...I laughed out loud! Yoga, because you don't work up a sweat and you don't push yourself too hard. We shall see about that! :)
Keith also asked about the medication he is taking. And Dr. B. said Keith could go off all his medicine except for the Vitamin D and the Acyclovir which is an anti-infection medicine which helps his new immune system. So that will be wonderful! There are also very few restrictions anymore. So he is able to mow the lawn, take out the garbage, and swim in lakes and pools again!
Since May, Keith's triglycerides have been extremely high, in the 1,000's and they should be in the 100's. So Keith has cut out bread, potatoes, pasta, rice, and sweets and his triglycerides have dropped to the 200's. He has also lost 24 pounds! They said to keep doing what you are doing, it's working!
Dr. B. explained that at the 6 month point you are just beginning the upward climb of gaining what you lost. Cannot wait to see what Keith will be like in 2 years! We maybe don't even realize all that was lost over the last 15 years, and we will be amazed at what he can do again.
Keith with Dr. Burt. Keith's shirt says, HSCT = Hematopietic Stem Cell Transplant
There was a guy in our facebook group selling these t-shirts to raise money for his own transplant and Keith wanted to help him out.
I believe we were told the white spots are the lesions on his brain.
Our meeting with neurologist Dr. Burt was at 12:30 on Wednesday. He walked in, looked at Keith and said, "so you are here for your 1 year check-up?" No, 6 month! To which he raised his eyebrows. Then started a whole list of questions, which lasted about 2 minutes, then he was shaking our hand, posing for a picture, and out the door! wow. I think he was in the room for 3 minutes, total. But then his nurse came in and handed us the MRI results and said, "no new or enhancing lesions" like it was no big deal! That is basically like saying, "you are now cancer free!" I think they are just so confident in their transplant that it's not that big of news to them anymore. (WE are still trying to wrap our minds around this news!) She answered the remaining questions we had and was very helpful. Keith had to do a bunch of testing in another room which he said he failed miserably, but again, hopeful to ace those tests one day!
There is just so much to be thankful for when you spend a few days in and out of waiting rooms and doctors offices. So many hurting people. We are SO SO blessed! It's hard to see what could have been Keith's future and to think we were saved from all that. And again our thoughts and prayers of thanksgiving go to our great God and His healing mercies, but also supporters and how truly grateful we are to all of you!
We headed home after our appointment with Dr. Burt. I could not entice them with any more the city had to offer. They wanted to get home. Home sweet home!
