Natural History Study in Chicago
The following is an email that I sent out to family and friends explaining our first trip to Chicago for the Natural History Study...
Hey guys! I thought I would just put into words the best I could the sum up of what happened on our first Chicago trip. I know that you all have been praying for us, and I wanted to be able to share this in a way that just gets it all out there. As I have been reminded, the progression of the disease they talk about does not take into account the prayers of those who love Hudson, and a God who heals. But even if He chooses not to heal Hudson outright, we see so many blessings and opportunities for God to show His love for this child and be a blessing to many more who will follow him... Let me know if you have any questions :) We are so blessed to have been given the gift of raising this child... he is a treasure!
My thoughts on our first Chicago Trip
This is my attempt to put into one file everything that we learned about Hudson, about Hunter Syndrome, and about what the future might look like for our family.
As an overview, Hudson did extremely well, and he qualified for the study very easily. We learned a lot of good things, many things were clarified that had been fuzzy before, and no new bad news was presented. We are so thankful for Hudson's attitude through the whole thing. That was certainly a gift from God. He lined up our appointments so that before each evaluation, we had time to go back to the hotel for a nap… and he actually took them! He also woke up on his own each time so we didn't have to wake him up and thus make him grumpy! By the time we would walk to the site, he had had just the right stimulation of him to be ready to do whatever was needed. Everyone said what a joy it was to work with him! We are so thankful, and we are certain that all the prayer that our loved ones offered up for us was heard and lovingly answered in the affirmative for this trip. Other trips will not be as stressful since they are all just following him, now that he has qualified for the study. We will be going to these same places every 3 months for the next two years to have Hudson followed and tested. He LOVED the testing since it was like playing, so it will not be a burden on him.
Also, we are SO blessed to be able to have met the professionals involved in this study… I did not meet one person that I was not THRILLED to have work with Hudson. Dr. Burton is the geneticist at Lurie Children's Hospital, and she headed up one of the sites for the Elaprase trial when years ago before it was approved so she knows her stuff! Also, she is going to be heading up a site (in Chicago) for the intrathecal Elaprase study when it happens in about a year (where Elaprase is put in the port in the spine to help it cross the blood brain barrier). She is a very nice lady who will tell it to you straight (what is hardest for me to get from his geneticist in Indy), and is very easy to communicate with. Hudson stole Dr. Burton's heart right away… She came in, introduced herself, and shook my hand… then we looked down, and Hudson very seriously had extended his hand so that she could shake it, too… all the 7 ladies in the room offered a collective, "awwww!" ;)
Dr. Burton confirmed what I had already learned… that Elaprase will help the soft tissues the best…. he probably won't have many heart, liver, or kidney problems. But the cartilage and bones while they will be helped a little, will not be fully helped… for instance, Hudson has hearing aids… his airway will still need to be closely monitored, and she confirmed that he is already losing range of motion in his shoulders and hips. Most of this is not life threatening, though.
The psychologist also loved Hudson, said he was the best two year old she's ever tested! She started him out on the DAS test, just to see how he would do. The DAS test is not supposed to really apply until he is close to 3, but she wanted to see how he would respond. I am pretty sure that most of his answers were completely random, but she thought they weren't because he was actually getting the majority of them right. In any case, she was encouraged that he got the concept because it looks like a good sign that in the future he will be able to use that test. The she switched to the Bayley test… and Hudson had a BALL. It was very much like playing, and he was all for it! Except for being distracted by any pictures of cookies, phones, or bottles and picking them every time no matter what/trying to eat or pretend with them, he did very well :) She was willing to skip around a little bit, too. She, too, fell in love with Hudson and said he was a joy to work with, and loved our family! I asked her a lot of questions, and she gave me honest, simple answers. It was great.
The OT therapist was also amazing. Hudson got to show off his new jumping skill a lot, which he loved, kicked and threw balls, etc. Hudson isn't talking, but he scored above his age level in everything else. His hand skills are great, opening and closing bottles, manipulating his crayons the right way and using both hands to work with the paper, etc… In fact, there was one exercise where he had to open a bottle, dump the beads into her hands, put them back, and put the cap back on. He opened the bottle, dumped them in her hands, started putting the beads in, but that was too easy. So he started to put the beads in the cap, and then he would dump the cap contents into the bottle! She said that even though he is not talking, his receptive language skills are wonderful… he can follow 2-3 step directions, and did everything asked of him right away. We were very encouraged.
So Hudson got off to a great start. I've been saying the meeting was bittersweet… and here's why. He did awesome, but the reality of Hunter Syndrome is that this is probably the high point for Hudson. In the next couple years he will start to plateau and then go backwards in his abilities. That is why he is in the study… to monitor his progression backward.
But there is silver lining there, too… While in our meeting with Dr. Burton, she seemed very excited about Hudson being in the Natural History Study because she thought this makes him an excellent candidate for the intrathecal trial. She said that since they were able to have documented how good he is doing, now, before the cognitive delay is to start…. and over the next year or so start to document a decline, that he would be a perfect candidate to be able to measure clear data that the intrathecal method of receiving elaprase is beneficial to the cognitive restoration of Hunters patients. There has NEVER been a way to treat the cognitive side of this disease before… and Hudson just might be able to be in the first wave, which means that IF it works out, he might not suffer as much cognitive delay as is predicted…
Oh! I almost forgot another praise! God was gracious to the girls, too! At every turn He had a blessing for them as well, from finding a fast food place on the way to the hospital that had Izzy drinks and pirate booty snacks (some of their favorites), to the American Girl doll store being on the walk between our hotel and the hospital (which we will be using as reading incentives ;).... God certainly doesn't forget about anybody! Being a sibling to Hudson will be increasingly difficult, especially if we do the intrathecal trial. So thankful we have a God who sees!
So, on that note, I will stop. I am thankful for this opportunity, and I pray that God will lead our family in the way He wants us to go, and equip us for the journey ahead, whatever it may be.
Thank you all for loving us and praying for us!
Becky
Hey guys! I thought I would just put into words the best I could the sum up of what happened on our first Chicago trip. I know that you all have been praying for us, and I wanted to be able to share this in a way that just gets it all out there. As I have been reminded, the progression of the disease they talk about does not take into account the prayers of those who love Hudson, and a God who heals. But even if He chooses not to heal Hudson outright, we see so many blessings and opportunities for God to show His love for this child and be a blessing to many more who will follow him... Let me know if you have any questions :) We are so blessed to have been given the gift of raising this child... he is a treasure!
My thoughts on our first Chicago Trip
This is my attempt to put into one file everything that we learned about Hudson, about Hunter Syndrome, and about what the future might look like for our family.
As an overview, Hudson did extremely well, and he qualified for the study very easily. We learned a lot of good things, many things were clarified that had been fuzzy before, and no new bad news was presented. We are so thankful for Hudson's attitude through the whole thing. That was certainly a gift from God. He lined up our appointments so that before each evaluation, we had time to go back to the hotel for a nap… and he actually took them! He also woke up on his own each time so we didn't have to wake him up and thus make him grumpy! By the time we would walk to the site, he had had just the right stimulation of him to be ready to do whatever was needed. Everyone said what a joy it was to work with him! We are so thankful, and we are certain that all the prayer that our loved ones offered up for us was heard and lovingly answered in the affirmative for this trip. Other trips will not be as stressful since they are all just following him, now that he has qualified for the study. We will be going to these same places every 3 months for the next two years to have Hudson followed and tested. He LOVED the testing since it was like playing, so it will not be a burden on him.
Also, we are SO blessed to be able to have met the professionals involved in this study… I did not meet one person that I was not THRILLED to have work with Hudson. Dr. Burton is the geneticist at Lurie Children's Hospital, and she headed up one of the sites for the Elaprase trial when years ago before it was approved so she knows her stuff! Also, she is going to be heading up a site (in Chicago) for the intrathecal Elaprase study when it happens in about a year (where Elaprase is put in the port in the spine to help it cross the blood brain barrier). She is a very nice lady who will tell it to you straight (what is hardest for me to get from his geneticist in Indy), and is very easy to communicate with. Hudson stole Dr. Burton's heart right away… She came in, introduced herself, and shook my hand… then we looked down, and Hudson very seriously had extended his hand so that she could shake it, too… all the 7 ladies in the room offered a collective, "awwww!" ;)
Dr. Burton confirmed what I had already learned… that Elaprase will help the soft tissues the best…. he probably won't have many heart, liver, or kidney problems. But the cartilage and bones while they will be helped a little, will not be fully helped… for instance, Hudson has hearing aids… his airway will still need to be closely monitored, and she confirmed that he is already losing range of motion in his shoulders and hips. Most of this is not life threatening, though.
The psychologist also loved Hudson, said he was the best two year old she's ever tested! She started him out on the DAS test, just to see how he would do. The DAS test is not supposed to really apply until he is close to 3, but she wanted to see how he would respond. I am pretty sure that most of his answers were completely random, but she thought they weren't because he was actually getting the majority of them right. In any case, she was encouraged that he got the concept because it looks like a good sign that in the future he will be able to use that test. The she switched to the Bayley test… and Hudson had a BALL. It was very much like playing, and he was all for it! Except for being distracted by any pictures of cookies, phones, or bottles and picking them every time no matter what/trying to eat or pretend with them, he did very well :) She was willing to skip around a little bit, too. She, too, fell in love with Hudson and said he was a joy to work with, and loved our family! I asked her a lot of questions, and she gave me honest, simple answers. It was great.
The OT therapist was also amazing. Hudson got to show off his new jumping skill a lot, which he loved, kicked and threw balls, etc. Hudson isn't talking, but he scored above his age level in everything else. His hand skills are great, opening and closing bottles, manipulating his crayons the right way and using both hands to work with the paper, etc… In fact, there was one exercise where he had to open a bottle, dump the beads into her hands, put them back, and put the cap back on. He opened the bottle, dumped them in her hands, started putting the beads in, but that was too easy. So he started to put the beads in the cap, and then he would dump the cap contents into the bottle! She said that even though he is not talking, his receptive language skills are wonderful… he can follow 2-3 step directions, and did everything asked of him right away. We were very encouraged.
So Hudson got off to a great start. I've been saying the meeting was bittersweet… and here's why. He did awesome, but the reality of Hunter Syndrome is that this is probably the high point for Hudson. In the next couple years he will start to plateau and then go backwards in his abilities. That is why he is in the study… to monitor his progression backward.
But there is silver lining there, too… While in our meeting with Dr. Burton, she seemed very excited about Hudson being in the Natural History Study because she thought this makes him an excellent candidate for the intrathecal trial. She said that since they were able to have documented how good he is doing, now, before the cognitive delay is to start…. and over the next year or so start to document a decline, that he would be a perfect candidate to be able to measure clear data that the intrathecal method of receiving elaprase is beneficial to the cognitive restoration of Hunters patients. There has NEVER been a way to treat the cognitive side of this disease before… and Hudson just might be able to be in the first wave, which means that IF it works out, he might not suffer as much cognitive delay as is predicted…
Oh! I almost forgot another praise! God was gracious to the girls, too! At every turn He had a blessing for them as well, from finding a fast food place on the way to the hospital that had Izzy drinks and pirate booty snacks (some of their favorites), to the American Girl doll store being on the walk between our hotel and the hospital (which we will be using as reading incentives ;).... God certainly doesn't forget about anybody! Being a sibling to Hudson will be increasingly difficult, especially if we do the intrathecal trial. So thankful we have a God who sees!
So, on that note, I will stop. I am thankful for this opportunity, and I pray that God will lead our family in the way He wants us to go, and equip us for the journey ahead, whatever it may be.
Thank you all for loving us and praying for us!
Becky