Colby Megan & Maggie
Tuesday, April 27, 2010
I would like to first start by saying Thank you to everyone who participated in the Tomorrow Fund walk and thank you to all the people who donated on behalf of Nicholas. It was a rainy day but it did not stop the kids from jumping in the puddles and blowing bubbles. Throughout the walk their are posters of the children who are/were patients of the clinic. Nick was the first child this year. The Tomorrow Fund Clinic has been wonderful to us over this past 1.5 years. They consider each patient as part of their family and will not give up on anyone. As I have mentioned before, Nick feels safe at clinic, it is part of his life and will probably always be part of it. We enjoyed a family party Sunday afternoon back at our house. Greg took Nick to clinic on Monday after school. His counts were good, except his red blood cells:
We will monitor him this week and see how he feels. If he is acting really tired and no energy we will bring him in for a red blood cell transfusion. The doctor has decided to give him one more treatment of the IVIG next month. They tested his level last week and he is just above the normal range, so as precautionary, we will go ahead with another infusion. Next Tuesday, Nick will have another Lumbar Puncture (spinal). He has one every 18 weeks, so Greg & I will be there with him. I believe we will be in PICU recovery during the procedure and be able to watch the whole time. We will tell Nick the night before because he can not eat or drink anything after midnight. I try not to think about the day until it arrives, we are always anxious waiting for the results and praying for the best.
On a side note, there is a family I have been following through caringbridge site because their son has ALL T-Cell. This little boy has endured so much and is losing his battle to leukemia through a rare chromosome disorder. Nick was tested for this chromosome at the time of his dx and he does not have it. This family really needs lots of prayers to get through the next few weeks. We are so greatful that Nick has been strong and his body has accepted the chemo to date. www.caringbridge.org/visit/caseydesombre