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Boston today - result no IV!

posted Sep 4, 2013, 10:48 PM by FightingFor Mya   [ updated Sep 4, 2013, 10:49 PM ]
Aug 22, 2013 8:45pm

We went down to Dana Faber again today to get weighed and check in with all the doctors (nutritionist, oncology, and stem cell transplant). The nutritionist said that her weight continues to increase which is good. Talked about our frustration on getting her to eat more. She said that she is getting what she needs because her weight is increasing, so basically I need to relax about this! :)

The stem cell doctor is very pleased with Mya's progress. As of today, we are at Day 70 of our 100 days of isolation. She said that we don't need to come back in until Day 100, which is Sept. 27th. That is awesome news!

The oncology doctors said it was alright to remove Mya's arm IV. She isn't giving blood for another month and all the major procedures are over, so they said it was a good time to remove it. For the MRI in October, Mya will just have a hand IV for that one procedure.

It was quite something to see that thing removed! The small tube came out of her arm, it was 15 inches long! It had to have gone all the way up into her neck. And it was so tiny too... amazing.

We also met with the opthtamologist to discuss Mya's eye. He sees improvement with the left eye's movement, which is good. However, it is still pulled to the outside. We have started talking about performing an operation on the eye to center it. It's been 6 months of treatment with patches and Botox shots. Normally, they like to wait 9-12 months with the current regiment, before they will entertain surgery. The doctor explained that there are 3 nerves that control the muscles of the eye. It appears that 2 of the 3 nerves for Mya have been damaged or are just not working. In the surgery, the plan would be to take the remaining nerve that is working, split it off and attach it around the damaged nerves to keep the eye centered. Mya's eye stil won't move alot, but at least it would be centered and looking forward. There are other options to think about in regards to its lack of dialation.

So over all, a great visit to Boston. And now, we don't need to go back for another month!