Dalton's Dream

It was a glorious day when my doctor said to me at my first OB visit," Dianna, I see two babies!". We were surprised when we found out I was pregnant again since our youngest daughter was only 6 months old. God had already blessed us with 4 babies, now we were going to have 6.

With this new news also came concern. What if one of our babies had Krabbe, or both of them? We contacted our genetics counselor to see what new research had been done since the loss of our first son, Anthony, in 1989. We were told there was nothing new in Krabbe research. But we didn't let this get to us. We focused on our twins and bringing them into the world as close to full term as possible.
My pregnancy went well with twice the morning sickness and according to Tommy, twice the mood changes. We delivered our babies Oct.3rd, 1996, five days before their due date. Things went well in the hospital and we came home all together only two days later. Now there was only one thing we had left to do, get a Krabbe test done on each of them.
At two weeks of age this test was done. Tommy and I anxiously awaited the results for two weeks. Then on Oct.31st. we called our genetics doctor only to receive what was our biggest fear. Dakota was a carrier, but Dalton had Krabbe. All I could do was cry. As I held him in my arms, all I could think was, "I am not giving up without a fight!". This deadly disease had already taken our first son, Anthony, and we were going to try to do something to save Dalton.
Again, we asked our genetics councelor for new information on research for Krabbe. And again we got the same reply..."There isn't anything new." It was then that we turned to other resources. My mom's business, Natural World, and my sister-in-law's friend looked up Krabbe on the internet and immediately faxed us all the things they could find. It was then that we learned about BMT"s (bone marrow transplants) and the ULF (United Leukodystrophy Foundation).
We called ULF and they put us in touch with DR. Krivit at the University of Minnesota Hospital. Alot of things were discussed concerning Dalton's condition and we were told to come to Minnesota to be tested for a possible BMT. Through the information we had given Dr. Krivit, he wasn't too sure it would be worth our trip out there. Dalton already had a few minor signs of Krabbe. He had some stiffness in his legs and was not able to latch on well to the breast when nursing. However, he was willing to see us.
Tommy and I gave this some serious thought and decided to see if there were any other doctors who were familiar with this disease and were performing transplants. To make a long story short, we were finally put in contact with Dr. Joanne Kurtzberg at Duke University Hospital in Durham, North Carolina. This was great news because we live in NC, only two and a half hours away.
Only one and a half weeks after Dalton was diagnosed, we were preparing for his BMT. Finding a donor was more simple than we could ever imagine. Our whole family was tested and his twin sister would be his chance at a new beginning. She was a PERFECT match. (Now we knew why God had blessed us with two babies at once).
Dalton entered Duke Hospital on Monday, Nov.25th. The following morning, he went down to surgery to get a hickman cathater placed in his chest. This was a central line placed in the large vein above his heart. He would receive all his medicines, tranfusions, nutrition, and most of all, his bone marrow transplant through this line. This was also used to draw his labs for all his many test. On this day we also began our chemotherapy. For eight days he was supposed to receive chemotherapy, but due to Dalton's size, we only had treatment 4 days, then we had a break until BMT day.
On Dec. 4th, I awoke to mixed feelings. It was BMT day. I was anxious for Dalton to receive his transplant, on the other hand, I was worried about Dakota going down to surgery to harvest her bone marrow. What if things went wrong, or what if there just wasn't enough bone marrow to harvest from her tiny two month old body? However, I knew this was something that had to be done...and it was.
Dakota was only in surgery about an hour and a half when the doctors came and got Tommy and I to go to recovery with her. (It was hard trying to be with both of our babies. We spent most of our time going from Dalton's room to the surgery waiting room.) Dr. Joanne Kurtberg and Dr. Paul Martin harvested Dakota's marrow . They were surprised to see they were able to get 60cc of marrow, since they were only expecting about 10cc.(and was hoping for 20cc.)
Dakota was soon released from recovery where she was then brought to Dalton's room. The family waited together while the normal procedures were done to prepare the marrow for it's new recepient.
Only a few hours after Dakota's bone marrow harvest, the time had finely came we all had been waiting for. The whole family gathered together to watch Dalton receive his transplant. It was given to him through his central line and only took about 45 minutes. This day was the beginning of alot of difficult things for Dalton. He had developed a severe diaper rash due to chemotheraphy. He had to go without a diaper several hours a day.
Soon came other problems that are side affect of a transplant. He had nursed up until his second day post bmt...now he had set up mucositis and was unable to drink by mouth. He got all his nutrition by his central line which helped him gain weight well. He had alot of restless nights, many of which I sometimes questioned myself, had I made the right choice. I knew in my heart it was the only choice for him. I just tried to keep in mind my promise to do everything I could for him.
On day eight post bmt we received wonderful news, Dalton had a white cell count of .5 which we had been told not to expect until day 14-day 21. Dakota's cells were beginning to grow and most of his were gone. This was what he needed and like the doctors, we were surprised to see things going ahead schedule. Things started getting better. Dalton's rash was healing nicely with the help of Dr Harris' Buttocks Paste and mylanta (sounds funny but it works) and his white count continued to grow higher. After 12 days of no feeds his mucositis was beginning to heal and he was ready to try nursing again. I had pumped milk for him to take by bottle but he didn't seem satisfied until he was feeding the natural way. Holding him in my arms to nurse him again was like the first time ...the bond was unbelieveable. I knew then that he was going to be fine.
Dalton continued to do well and on day 18 post bmt he was released from the hospital as an outpatient. It was Dec.22, one day after my birthday and 3 days before Tommy's birthday and Christmas. We couldn't have asked for a better present.
Even though he was released from the hospital, we had to stay near by. We went to the clinic every day for a couple of weeks to check his counts and other labs. I drew his blood from his central line which all transplant patients go home with. Usually most patients continue their nutrition through their central line after they are released from the hospital. Dalton didn't need it since he was nursing enough to get the nutrition he needed.
Dalton and Dakota's first Christmas came so Tommy brought the rest of the children to Durham to the apartment which I was staying with the twins. We felt blessed to have our family together to celebrate this joyous occassion.
As days went by and Dalton continued to improve, he started getting a break from going to the clinic. It is usually routine for transplant patients to stay near the hospital for 100 days after the transplant. But, at day 60 post bmt we brought Dalton home. Finally our whole family was together again.
Dalton has had several check-ups since coming home. He is being followed very carefully. His white cells are normal, he has 80-85% of Dakota's cells, but the most important test reveals that Dalton now has a normal enzyme level and his protein levels are coming down. He is also being followed by Dr. Krivit in Minnesota, whom we met in August of '97. Dalton's progress has been published in The New England Journal of Medicine April '98. He is patient # 5.
Dalton is doing as well as can be expected. He is 4 years old. He uses a wide vocabulary and is doing most everything Dakota is doing, with the exception of walking. He receives physical theraphy five times a week and occupational therapy twice a week.
You could say Dalton is teaching us alot of things. His progress teaches the doctors so they can learn more on infantile Krabbe transplants. But most of all, he has taught me to not take my children for granted...and to never give up. He has had to fight a long battle but finally "he wins!".

The decision to have your child receive a transpant should be taken with alot of consideration. It is not an easy process by no means. It was our choice for Dalton only because he was diagnosed early and he had a donor ready. This is not always the case. We have experienced both situations dealing with Krabbe and neither one was easy. We will remember both experiences for the rest of our lives. We hope our story will help other families. We would like to thank all Dalton's doctors, our family and friends for their support, our new families we have met over the internet through the Krabbe site, Natural World for getting information about Krabbe research and connecting us with ULF, and most of all...THE LORD. Without him we would be lost.

For more information on bone marrow transplants and cord blood transplants, see Joseph's page