We've decided on Minnesota

Well, we finally decided. We will be going to Fairview Hospital at the University of Minnesota for Max's transplant.

As you know, we have been researching facilities for the past few weeks. We were deciding between Children's Memorial Hospital in Chicago, Duke University Medical Center in NC and Fairview. We ruled out Children's pretty early on because while they had much experience with transplants, they had little experience treating children with Hurler Syndrome. We had a very hard time, however, deciding between MN and Duke, but we finally did pick MN for the following reasons ...

1. We had a much more thorough visit at MN. We got to meet many of the sub-specialists who would be treating Max and feel confident in their expertise. Our trip to Duke was much shorter. We only met with the transplant doctor, and while we have tremendous confidence in her, we feel more secure having met the other doctors at MN. This is especially true of the pulminogist, who will closely following Max due to his history of lung problems.

2. MN seems less likely to shunt Max for his hydrocephalus. While they may end up having to do so, they use several criteria to determine whether or not a shunt is needed. Duke bases the decision to shunt on lumbar puncture. While MN does perform lumbar punctures, they use several other methods as well. If we can avoid a shunt we'd like to for two reasons. First, it can be a major complication during transplant if it becomes infected. Second, we'd like to avoid a life time of having to deal with the shunt. While some patients experience no problems with their shunts, we have a family friend with a child who has 18 shunt related surgeries. She said if you can avoid a shunt, avoid it. If Max does end up needing one he will certainly get it and we will deal with it, but if not that would be great.

3. On a less significant note, MN is closer to home, making it easier for travel and for people to visit us.

Our tentative date to begin testing in MN is July 14th. Things are going to become very crazy for us now.

We thank all of you for your support during this difficult decision. We will keep you posted on any updates. Look for Mighty-Max.com to be up very soon.

Love,
Margaret, Mike. Grace and Max

Hospital Visits

Hey Max fans,

The move towards transplant continues. We visited University of Minnesota this week Mon and Tues. to discuss Max's treatment. We were very impressed with their Hurlers experience. They have transplanted the most Hurlers kids in the country. Max had nine appointments over the two days. We met with Dr. Grewal of metabolic storage disorders, as well as ENT, pulminology, social work, neurology, neuro-psych, and more.

We also met a few Hurlers kids in the waiting room. It was so strange. We walked in and we recognized a girl we've seen online, and the look we received from the Dad was unmistakable. He could pick out Max as a Hurler child from across the room. The disease is so rare but they have so many patients there.

Max did great at all of his check-ups. He scored very well on the neuro-psych tests. He is developmentally at the level of a 9 month old (his adjusted age), and not far off from his chronological age, 11 months. A poor score on this test is the biggest contra-indicator for transplant, so we were very glad he did well.

As it stands right now, they would not recommend a tonsillectomy or a shunt. MN believes that the best treatment for hydrocephalus in Hurlers patients is transplant. These are two areas that differ from Duke. I think Duke removes all tonsils before transplant, and they shunt based on cerebral spinal fluid pressure.

Their biggest area for concern is Max's lungs. As you may or may not know, Max has infantile asthma. Hurler kids are more predisposed to lung issues during transplant, and Max would be at a higher risk. If we choose MN, we'd have to go there a few weeks before transplant to give his lungs a "tune-up" and make them as stable as possible.

They took Grace's blood again to check her enzyme level. As some of you know, she is an exact match for Max's HLA type. But they were disappointed that her level was only 11, and are hoping it comes back higher next time. If it is still 11 they probably would not use her as Max's donor, but would go for cord blood instead.

We also toured the Ronald McDonald house and were pleasantly surprised. It is a housing option for us if we go there, although we worry about exposing Max to so many people and germs after transplant. It has many amenities for us and Grace and a location that make it a very viable option for our family. Otherwise, we can put our name on a waiting list for a University apartment.

We were supposed to go to Duke this morning and meet with Dr. Kurtzberg from their transplant unit, but mother nature had other ideas. Grace was up all night with the stomach flu. Mike and I got no sleep and then I felt sick this morning. The plans have been changed to next week Tues. We are disappointed, as we wanted to make our decision this weekend so we can get the ball rolling. I guess it will be postponed a week. We have been asking for a sign as to which place to choose and wondered if this was it!

Duke will be the last place we visit. After this trip we will make our decision to the best of our ability and we are hopeful that we will be able to make it with confidence and with no regrets.

As this letter indicates, we are deeply immersed in the medical nuances of transplant and it in necessary for us to remain on task. This moves us out of some of the earlier discussions we raised as far as fundraising and research. These remain, however, a major goal for us. We first must help our guy get through his transplant, and if successful, he will be a daily inspiration for these other goals.

Max started "cruising" along the side of his crib this week as well as saying ma and da for the first time. He continues to be a source of so much
joy, determination, and focus that he is an inspiration. And his
performances at these many many appointments is directly responsible for our feeling the most hopeful we have felt in some time.

We will keep you posted.

-Margaret and Mike

Hospital Options

Dear Max fans,

I think our last email started with "Things have changed" and that's probably going to be the case from here on out. When we last wrote, we spoke of the movement towards transplant and that we thought we could do it at Children's Memorial Hospital. We have come to learn that while their experience in performing transplants for children is extensive, it's minimal at best when dealing with Hurler kids. The doctors there feel that their experience is enough to give us confidence, but in talking to so many families who have been through transplant and with the MPS society, we have been told again and again that Hurler children can be very tricky and experience really does matter.

We've been in contact with many families now, and the personal experiences have been very encouraging and also frighteningly real. The important thing is that these families have helped us prepare for what we are about to face and have made themselves available for support at any time.

In addition, we have made contact with doctors at Duke and at Fairview (Univ. Of Minnesota) and their response and interest in Max has been amazing. They both have been working with these kids for so long, and they are eager to have another little guy to aid in the ongoing search for a master plan for treatment.

Children's is not out of the options yet, it's far too good of a hospital and of a situation for our whole family to just write it off. We will have more meetings with the team there in the near future, and we are going to be direct about our need for confidence. If it is not met, we are trying to prepare ourselves for a situation that would take us away from home for a long period of time. We have a call in with Minnesota to take a trip north for a consultation, and we are also looking into traveling to Duke.

We have read of many families that did not travel to get treatment and we have read of families who lost children at even these top hospitals. There are no easy choices.

In other news, we are going to be telling you all of a website for Max that our friend Chris is making for us. She'll be maintaining it and coordinating our updates once it's online, and we will have our updates there, links to sites we are finding, and a message board for all of you to contact us and each other. We will send an update out when it's ready.

As for Miss Grace, she has been a trooper thorough all of this. As she will readily tell anyone, she was very brave when she got her blood checked at the 'kids hospital." She knows if her blood matches Max's she will get to share some with him. She loves to make her brother laugh, and will do just about anything to get him to giggle (including bonking herself on the head). She is obsessed with dresses, and we have to do quite a bit on convincing to make her wear pants. We are going to be taking her to the movies to see
Finding Nemo tomorrow.

Thanks again for the kind words of encouragement, and for sharing our story with those around you. It's been very surprising to hear from so many people near and far. Sorry if we have been a little late in responding to some emails and calls, please know how much they are appreciated even if we don't get back to you right away.

We will keep you posted on everything.

Sincerely,

Margaret & Mike