AIM II Day 24-28

The days at the clinic are getting a little more difficult. Wednesday was another round of leg needles and it took a phone call to Arron to get Nathan into the nurse's room to have the Erwina Asparginase administered. The clinic was busier than usual as Dr Ali was tied up with one family. Lauren who is 5 and is in the maintenance part of being treated for ALL, developed a very rare allergic reaction to the Methotrexate chemo pill. The family was given their options which essentially meant the parents had to decide whether they would discontinue treatment completely or take another route.

Friday Arron had an EDO so he came to the clinic with us. Nathan again did not want to receive the leg needles. He is at the point that breathing through them isn't working. He musters up control to count but soon after the needle is in he screams. Then he tries to forget about it by being funny.

Although Nathan has it difficult we were reminded again on Friday that things could be worse. Another little boy, Owen who is somewhere between 3 and 4, relapsed. We have seen too many of these cases in our days at the clinic and makes me question what with all the improvement in medication why these children need to suffer as they do. Watching the anguish these families are faced with makes being at the clinic all that more difficult. My heart goes out to them.

Dr Ali had a rough week with his group of patients. As a result strict orders were provided for Nathan to receive his fresh frozen plasma over a 4 hour period to ensure he had no negative reaction. I was quite surprised by these instructions since Nathan has being receiving the plasma after the 3rd round of leg needles since March and it has never dripped longer than 2 hours. So Friday was a long, draining day.

We count our blessings that Nathan is doing well. He had a good weekend and took the opportunity to play with his brothers and some friends. Nathan will have a heavy week of treatment this week with Tuesday being the only day not at the clinic. Mon, Wed and Friday are leg needles and then none again until Sept 14th. Once we reach September 14th he will have 12 more rounds of leg needles between then and the middle of November and then they should be done.