Daniel Canfield

This page was created on December 18, 2004, just 13 days after we received the preliminary diagnosis of Adrenoleukodystrophy (ALD.) It has been created to provide friends and family a place to go to get updates on Daniel.

Please take a moment sign the guestbook. You may also send a message to Daniel or anyone in his family at the author's email address below.

Thanks in advance for your prayers and support.

God Bless You!


- Daniel Canfield & Family


"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

Journal

Thursday, June 15, 2006 11:24 PM CDT

June 10, 2006

“Uncharted Territory”

Hello to all our Friends,

It’s been a VERY long time since we have updated Daniel’s site. It is not because he hasn’t had anything going on, but more because I was beginning to feel like a broken record (or as Daniel might say…..”the song that never ends”). As with the last update, most of our time has been spent “waiting” for his RFLP (bone marrow percentage) reports. That has continued to be somewhat of a rollercoaster and unfortunately, the direction has been going down rather than up. After weaning off the cyclosporine, Daniel was 80onor marrow which was wonderful. The next move was to take him off his Cellcept, which is a drug that helps prevent rejection of the donor marrow. Unfortunately, he lost ground after being off the drug a couple of months and ended up back on it, at which point he stabilized around 55onor.

The concern is that if he looses his donor marrow, then his ALD may re-activate. They have had about 3 other kids in this situation and when the donor graft has dropped the ALD progressed. The transplant team feels that if he drops below 50onor marrow, the chance of loosing his graft totally is significant. So, as you can see, Daniel is in a rather precarious situation. The other little issue is that we are now in “uncharted territory,” according to Dr. Orchard. Hmmmmmm…….at first blush that comment has the ability to put any normal parent into a panic and it did (I take that as a good sign….I may still be somewhat normal). The good news is that they are still coming up with options.

So this week we returned to Minnesota with Thomas along, to proceed with a procedure that has documented success in the leukemia setting. They have not used it in ALD and have no data to know what may happen. DLI or Donor Lymphocyte Infusion is now the new set of letters that you can add to your dictionary. They give Daniel more of Thomas’s cells with the goal of inducing a ‘ graft vs host or Thomas vs Daniel’ response. They want just enough response to get Thomas’s marrow to be primary, but not enough to cause them to need to treat him for graft vs host disease.

Friday morning they hooked Thomas up to a centrifuge ( apheresis machine) for three hours and collected donor lymphocytes. They then quantify what they collect, give a small amount to Daniel and freeze the rest in progressively larger quantities for future use. Thomas was again a GREAT donor. He tolerated the procedure well and the staff indicated they got A LOT of cells. Daniel received the first infusion of cells late Friday afternoon. He did well, but was a bit unhappy that he had to get “stupid Benadryl.” On the other hand, the trip home was rather quiet…….he slept the whole 5 hours.

So, we have now moved on to our new journey of waiting in uncharted territory. It is somewhat unnerving because while we wait to see if he is going to improve his marrow percentage, he could loose his graft completely. On the other hand, we have a back up source from Thomas in a freezer in Minnesota so if needed they will do a second transplant.

It would be easy to be in a constant state of anxiety at this point, but as always we are banking on the fact that God is with us and He has a plan even if we can’t see the whole picture. As I contemplated what it meant to be in “uncharted territory” it struck me that none of us really are on a known path into the future. We like to think we know what is next, because it gives us some sense of control and predictability. The reality is that even though you may have plans for your future, they can change in a heartbeat, for better or worse, and you are in “uncharted territory.” That would be a very scary place to be if we did not know that our hope is in God and that he is in control, even when we feel like we are lost. We return to the scripture that starts Daniel’s web page…………….

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

We will try to do a better job to keep you updated over the next few months. Our next RFLP will be in two weeks and if he needs additional cells it could be in 3 to 6 weeks depending on the lab results. In the mean time, we appreciate your interest and prayers.

You can see some pictures of our visit to Minneapolis by going to the following links. They include pictures of the hospital and clinic buildings, a visit to our friends at the Ronald McDonald House, a visit to Como Zoo, the “Mall”, some pictures of the DLI, and pictures from “Family Weekend” at the Iowa Braille School. The blindfolds were part of the independent living “Olympics” that helped us all understand a little of what it is like for a visually impaired person to do some everyday tasks.

For those of you who haven’t seen Daniel in awhile, you’ll see a lot of change from the last set of pictures. Use the back arrow on your broswer to return from the pictures to this page...

Clinic & DLI Pictures

Como Zoo and Conservatory Pictures

RMH and Around Minneapolis Pictures

Iowa Braille School Pictures


For those of you who haven’t seen Daniel in awhile, you’ll see a lot of change from the last set of pictures…..

Have a Blessed Summer.

Sylvia, Larry, Daniel, Thomas and Jen

Read Journal History

Hospital Information:

Fairview-University Children's Hospital
420 Delaware Street S.E.
Minneapolis, MN 55455
612-672-6000

Links:

E-mail Author: laanspac@engineer.com

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