Robert’s Road to Recovery

An Action Plan & Donor Search

The website, Paul Murphy, Diane Smith and other parents were our lifesavers. My father-in-law, Fred is an old army doctor now practicing in Oregon. He called many of his old buddies to find out which doctors we should talk to and I went on the website. We would both come up with the same answers but I would get mine slightly faster.

It was clear at Robert’s age that a BMT was our best option. Matt, Robert’s twin had a 25% chance of matching. Mark and I had a 1% chance and Robert’s half siblings had no better chance than the general population. Unfortunately, none of us matched. We started an unrelated donor search with Minnesota.

We went to see both Dr. Peters at the University of Minnesota and Dr. Cowen at UCSF in San Francisco. U of M had a lot more experienced with metabolic disorders but UCSF was much closer. We took Fred to both locations with us. It is extremely helpful to have a doctor in the family at a time like this. We felt both locations could do an excellent job but that our family would feel the least disruptions if we went to UCSF.

Donor Search

We moved the donor search to UCSF. We started around Valentine’s Day. This is a very slow part of the procedure. Each potential donor (Robert had 26) must be contacted and be brought in to give blood. The blood first is analyzed to see if all six markers match. Once this is confirmed, the blood is analyzed again using high resonance analysis. They look at each marker again and analyze it to the fourth level. For example, one of Robert’s markers is an A0302 and the rest of the world is an A0301. This is only one allele off but they are not sure what effect that will have on him.

Once the donor’s blood is in, it takes about three weeks to analyze it. I wish I had worked with the the donor coordinator at UCSF right up front to understand each step that had to be taken with the donors blood, I would have developed a chart to fill out or I would have asked her to fill it out. It would have made communicating so much easier. And even thought all 26 donors were in the database before Robert’s request came in, this part of the search took four long months.

This step takes more patience to live through than I thought I had. Again, I should have asked the steps the donor needed to go through before the donor can be accepted and the BMT can be scheduled. The donor must go through a physical, must accept giving bone marrow or peripheral blood (whichever your doctor requests), must go through psychological counseling and must agree to the date (not necessarily in this order).

Our first donor moved out the date by a week to better fit his schedule (we were not even supposed to know it was a he) and then at the last minute said he was not willing to give bone marrow and only willing to give peripheral blood. We had to move onto the second donor and start all over again. This donor was in his thirties, which is a very good age. They prefer men in thier twenties or thirties because they generate the most white blood cell. Women who have been pregnant are less preferable. There can be more hosts versus graft disease.

It took 10 days to get the second donor in for a physical. Then something showed up on his echocardiogram that needed to be re-evaluated. It took 8 days to get an appointment to see the bone marrow donor cardiologist and then a few more days to get the results. We have kept Robert isolated from his siblings, school mates and therapists. He went to live with my mother about a half-hour from us. He has been there three weeks. My father-in-law says there are studies that show if a person goes into a BMT with a virus, mortality goes up 25%. We have been in a holding pattern for about three weeks.

There are all kinds of tests required within 30 days of the BMT. Unfortunately, we had many of these done a few months earlier and they all had to be repeated again. Robert need to see an audiologist, a psychiatrist for testing, a cardiologist, a dermatologist, a dentist, an orthopedic surgeon, repeat all blood tests and an MRI’s of the brain and back.

On the day we found out the first donor backed out, Robert was having dental work under anathesia. I think dentist do not understand this syndrome at all. Robert had two fillings and caps put on the back teeth because he was grinding them so bad. He does not grind his teeth anymore. As parents, I think we have to insist on caps to protect our child’s teeth.

The day before we found out the second donor cleared, I was at our pediatrician’s office and noticed one of Robert’s front teeth looked very bad. I had him at his dentist within two hours and Dr. Kelly said the tooth needed to be pulled because the root was exposed.

I can see why the doctors don’t like isolation. It has been extremely hard on all of us. I think the stress made Mark sick. He was supposed to take Robert for his line placement but he has a sore throat and we have now decided to keep him separate from Robert.

I would recommend working on good sanitary practices four months before the bone marrow transplant. We are a big family with bad habits. We eat off each other’s plates and drink from each other’s cups. This has been a very hard habit to break. For hand washing the sanitizing cleansers have been great

I also wish I had gotten Robert’s latest trigger finger worked on during the search for the donor. Dr. Cowen does not want us to do it so close to the BMT. We will probably have to wait a year. It does affect the use of his hands.

It is now late Sunday night and we will start the whole process on Tuesday. I think I better get some sleep.

Please pray for Robert.

Read more:

Back to the Beginning | Suspicions & Diagnosis | An action plan & donor search | Robert’s surgeries

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