* While my laptop is out of commission, Landen's CaringBridge site has the most current updates (and photos). Thankfully, it's very easy to update from my phone. If you want to follow his treatment (and not wait for slow updates on dA), check it out here: [link]


December 5, 2012

Back at MD Anderson, thank goodness...

This hospital stay is wearing all of us out, and Landen's list of challenges only seems to be getting longer...

We are working diligently with the physical and occupational therapists to get him back on his feet. He is making progress-- slowly, but it IS progress-- but he has lost so much muscle mass that therapy (especially walking) is still very painful for him and he dreads putting his feet on the floor.

Nutrition is also a challenge. Landen is consuming calories and meeting the nutritionist's expectations... but his phosphorus is very high, and it has spent the last several days climbing instead of coming back down to normal levels. It's turning into a real problem.

The doctors have not put him on a low-phosphorus diet because of nutritional concerns (because it would eliminate dairy, peanut butter, and most other high-calorie foods that Bug will eat)... but today they decided that we need to limit his milk intake, and they put him on an oral medication that will bind the phosphorus in his meals and keep some of it from absorbing into his bloodstream. The only trouble is, it must be taken with, or right after, a meal... and oral medication tends to make him nauseated... so giving it with (or right after) food is like waving a red flag in front of a bull. Landen ate well this evening... but he vomited everything after I gave him the phosphorus-binding medicine.

Back to square one.

I don't know what we're going to do about the food/medication issue tomorrow. I'll just have to ask the nurse for anti-nausea medication before meals and hope for the best. He can't afford to LOSE food.

If this wasn't enough, I spoke with our primary oncologist (Dr. Wells) a couple of days ago and we had a serious discussion about the future of Landen's treatment in the face of these new cardiac issues... and there is now a possibility that he will NOT be eligible for a bone marrow transplant, or that he will have to wait much longer to have one. And he cannot receive any high-dose chemotherapy until his heart function improves. We're stymied.

The original plan was a round of low-dose chemotherapy (it could have been out-patient if we weren't already in the hospital), and then a round of very high-dose chemotherapy right before transplant (to completely wipe everything out)... and then do the transplant.

Now... I don't know.

Dr. Wells intends to go ahead with the round of low-dose chemotherapy, which will probably start next week or soon after. Then, we may be looking at two or three (or more) rounds of low-dose chemotherapy, followed by a much higher end round of chemotherapy. Whether Landen is able to get a bone marrow transplant after the last round of chemo, or not, will depend on the condition of his heart and the transplant team's willingness to take him on as a patient.

This has been a lot of information (and changes) to handle, and I feel really overwhelmed right now... especially when all I really want to do is go home and have a nice, family Christmas with Bug and the people we love.

We'll just have to take it one day at a time. What happens in the future will happen when we get there, and I don't want to spoil the now by worrying too much about the might.

I'm praying for the best.

Please keep Landen in your thoughts and prayers. We are going to keep tackling one issue at a time until we get them all sorted out and all that's left to do is go outside and play.

Kadri

* While my laptop is out of commission, Landen's CaringBridge site has the most current updates (and photos). Thankfully, it's very easy to update from my phone. If you want to follow his treatment (and not wait for slow updates on dA), check it out here: [link]