Tuesday, January 25, 2005

 

More Weight and GVH

Devin had his appointment this morning. As has been the trend for the past few visits, our boy has put some weight on.

We saw Dr. Frangoul very quickly. He is happy with the progress Devin is making. The small bits of GVH on his face, which clear up when I apply the topical version of prograf to the spots, are not much of a concern. Dr. Frangoul said if Devin has those small outbreaks and doesn't have to go back on the medication or the medication needs to be increased, that is good. Those little spots on his face will keep the leukemia at bay. Since that is the case, I say let the boy have those little spots on his face forever!

His magnesium level has been within the normal range for the last few visits as well. Since we are tapering the medication that requires the magnesium supplement, we should be able to drop some of his magnesium pills. He is currently taking 12 large magnesium with protien pills a day. I will call tomorrow to check his magnesium level and we may be able to drop him to 10 or even 8 pills a day.

His prograf taper goes down to .2 ml twice a day tomorrow. At this rate, by the 9th of February, he will be totally off his prograf. Once he is off his prograf, we should be able to drop his prevacid and his magnesium. He will have to continue on bactrim and acycolovir for at least 3 months after that. I am not sure about his vefend.

Devin has been testing us lately. Over the weekend, he and his brothers decided it would be okay to leave our neighborhood, get on a major road and walk a few miles to a gas station. They chose to go when the temperature dropped over 14º, down into the low 20's, in an hour and got incredibly cold. They turned around after going about a mile and Devin spilled his guts to us. Why these silly boys thought we would be okay with them doing this is still a mystery. They had told Dad they were at a friends house so now all three are on a very, very short leash. While we are glad that nothing happened to them, we are very angry that they even attempted this.

Devin is doing well in school, we have been working on his spelling and seen an improvement in his spelling test results.

Since Devin is doing well, we are back to visits every 4 weeks. Our next clinic appointment is February 22.

posted by Devin's Mom 9:07 PM

Tuesday, January 04, 2005

 

Gaining Weight

Devin has gained yet some more weight. At his appointment today, he was just over 58 lbs! This is wonderful that he is gaining weight and getting taller.

Just before Christmas, we had some really bad weather come in. It happen to start on a day that we had planned to go to the pharmacy to pick up refills. The weather closed the pharmacy down where we could not get the refill. I called down to the oncologist on call at Vanderbilt. Luckily, I had an alternate medication at the house that Devin could take until the roads cleared and we could pick up his refill. As it turned out, it was nearly a week before we could get in.

Devin's skin is looking much better, we have been applying a topical cream on any spots that we see and it has really made a difference. Dr. Frangoul was pleased with how his skin is looking.

The prograf taper continues. It has gotten to the point now where his prograf level is not being checked so I don't have to hold it on the mornings he has an appointment. I forgot that we could stop his amoxicillin after his last bottle ran out so I am going to double check with the clinic and stop it. If that was the case, he only took it a few days longer than the date we were told we could stop.

As always, no news is good news. We are just cruising along here. Our next clinic appointment will be January 25.

posted by Devin's Mom 11:05 PM

Saturday, January 01, 2005

 

posted by Devin's Mom 12:01 AM