Today has been a long day... the entire family was at the clinic for 9am as Nathan was scheduled to have a spinal treatment today. With his platelets all over the board, we asked whether they would proceed or wait for blood work to come back. His platelets were 43 on Saturday and the magic number we were told is 50. So on the assumption that they would reduce further, we waited for blood work to come back switching Nathan's treatment time with another child's. It was a good thing we waited as his platelets came in at 19! Needless to say Nathan received another platelet transfusion today. He received extra sleepy medication today in order to have the leg needles given to him while he was sleeping. He felt horrible today and had a headache right after the treatment, an indication he sat up too soon after having it. Although nauseated and tired, he managed to sleep this afternoon putting him in a really good mood for the evening. Nathan will have a triple intrathecal treatment every Monday during this phase.
The boys were great at the clinic today. Nathan walked in talking over his shoulder to his brothers: "follow me boys", since this was his domain. They enjoyed the Starlite system together and then when asked to go in to get the topical cream on their arms for the HLA testing they did great. Carter was anxious as he was thinking more about the needle and Justin was relaxed as he didn't understand. Arron went first followed by Carter and Justin putting me last. The needles the clinic uses to draw blood are a lot shorter than when you go for blood work. The nurses had to fill 2 tubes - somewhere between 8-10mls- each. Carter seemed to flow slowly so actually needed two pokes to complete his blood work but he did really well and the nurses were great at providing distractions for them. Justin was great, and teased Carter at the end that he did better than him but they both did wonderful. Since I was last the boys wanted to go out to play the Wii rather than wait and I was grateful as I hate needles :). It didn't hurt but by that point my anxiety levels were high and I was grateful for a few minutes to let the tears fall. Now we wait and pray that one of us is a match.
Nathan's white blood cells were at 0.58 today and neutrophils of 0.18. He will have leg needles and fresh frozen plasma on Wed and leg needles on Friday, so hopefully his counts will stabilize and only the good ones will come back. We also pray for no fever.
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