We have not officially started maintenance chemotherapy because Nico’s counts have not quite recovered from DI. Nico’s blood work continued to drop for weeks after DI was officially over, but this past week he was just under the threshold and is definitely on the mend. Nico has been eating like a horse, a welcome change since he has not grown while on front line chemo (the doctors assure us that this is common), and playing very hard. We even tried out riding the bike that he got last Christmas and never got to use. The biggest concern that we have right now is that Nico continues to complain of knee pain. He frequently wakes up in the night crying from the pain. It seems to come and go, and generally it does not seem to limit him, but when he has it, it is very intense. We hope to see Nico’s oncologist again this week when we start maintenance (fingers crossed), and get to the bottom of it.
Today was the CureSearch Walk. If we are Facebook friends, you have already experienced the onslaught of posts about CureSearch. Jeff and I decided that we wanted to participate for several reasons. First, a lot of the cancer non-profits contribute close to nothing for childhood cancer research. For example, Leukemia Lymphoma Society contributes one cent for every public dollar donated. The American Cancer Society contributes two cents for every dollar. Less than 4% of federal funds allocated for cancer research is directed to childhood cancer (and that is all childhood cancers combined). Second, Jeff and I feel a tremendous amount of gratitude for the fairly incredible advances made in the treatment of leukemia (in spite of this funding gap), and wanted to give back in some way. Third, the Walk corresponded with Nico completing front line chemotherapy and onto maintenance. So this Walk served as a sort of coming-out for Nico.
Nico has not been able to participate in a large gathering or socialize with other children outside of the hospital (and that is still extremely limited) for over ten months. Nico woke up this morning knowing that his Aunt Casa (Jessica) flew in from Phoenix for a special event and expecting that we were all going to walk. But he was totally unprepared for this event. When we first arrived to Sugar House Park, Nico had a complete meltdown. He was totally overwhelmed. Aunt Casa knows him very well, pulled him aside and he calmed down. Nico still stayed away from the group for the most part and would occasionally climb into his stroller and shut everything out.
Then his friends started to arrive, friends that Nico had not seen in over ten months. That morning, as we were getting ready to leave for the Walk, Nico insisted we bring a box of Annie’s shells & white cheddar (his favorite). When Nico recognized his friend, he pulled out the macaroni and explained what he had and how to make it. His friend excitedly showed his mother the box, and suddenly, Nico had found “his people.” Later another friend showed up, a friend that Nico played with regularly before, and I tried to stand back and just watch. Nico was particularly overwhelmed at that time, but before I knew it, Nico and his friends were playing on the side of a grassy hill. Jeff was choked up, and I felt just a little afraid to exhale, but it was a really important milestone for all of us.
I know that we have written many times how overwhelming the support has been, but again, we were really humbled by the outpour. Friends from my college days (and that was a long, long time ago) drove up from Provo with their families. The Montessori Community School pulled through big time again – Guides (teachers), the Director, other parents, even parents that we never met before, and lots of friends (classmates) of Nico. Nico’s guide, Miss Sophie, has been there for our boy and family at every turn, and even though she never takes credit, I cannot imagine what the last year would have been like without her. Overall, Team Nico raised over $6,000.00 for CureSearch. Salt Lake City raised over $106,000.00, and CureSearch said this was the most successful grassroots fundraiser they had seen in over ten years.
After this post, I am attaching a slideshow of pictures from the Walk and a picture of our dear friend Adriana, who ran her 10th (that is tenth!) marathon this year while championing our warrior on her shirt. I think the day was a success. I am exhausted, and going to bed now.
Today was the CureSearch Walk. If we are Facebook friends, you have already experienced the onslaught of posts about CureSearch. Jeff and I decided that we wanted to participate for several reasons. First, a lot of the cancer non-profits contribute close to nothing for childhood cancer research. For example, Leukemia Lymphoma Society contributes one cent for every public dollar donated. The American Cancer Society contributes two cents for every dollar. Less than 4% of federal funds allocated for cancer research is directed to childhood cancer (and that is all childhood cancers combined). Second, Jeff and I feel a tremendous amount of gratitude for the fairly incredible advances made in the treatment of leukemia (in spite of this funding gap), and wanted to give back in some way. Third, the Walk corresponded with Nico completing front line chemotherapy and onto maintenance. So this Walk served as a sort of coming-out for Nico.
Nico has not been able to participate in a large gathering or socialize with other children outside of the hospital (and that is still extremely limited) for over ten months. Nico woke up this morning knowing that his Aunt Casa (Jessica) flew in from Phoenix for a special event and expecting that we were all going to walk. But he was totally unprepared for this event. When we first arrived to Sugar House Park, Nico had a complete meltdown. He was totally overwhelmed. Aunt Casa knows him very well, pulled him aside and he calmed down. Nico still stayed away from the group for the most part and would occasionally climb into his stroller and shut everything out.
Then his friends started to arrive, friends that Nico had not seen in over ten months. That morning, as we were getting ready to leave for the Walk, Nico insisted we bring a box of Annie’s shells & white cheddar (his favorite). When Nico recognized his friend, he pulled out the macaroni and explained what he had and how to make it. His friend excitedly showed his mother the box, and suddenly, Nico had found “his people.” Later another friend showed up, a friend that Nico played with regularly before, and I tried to stand back and just watch. Nico was particularly overwhelmed at that time, but before I knew it, Nico and his friends were playing on the side of a grassy hill. Jeff was choked up, and I felt just a little afraid to exhale, but it was a really important milestone for all of us.
I know that we have written many times how overwhelming the support has been, but again, we were really humbled by the outpour. Friends from my college days (and that was a long, long time ago) drove up from Provo with their families. The Montessori Community School pulled through big time again – Guides (teachers), the Director, other parents, even parents that we never met before, and lots of friends (classmates) of Nico. Nico’s guide, Miss Sophie, has been there for our boy and family at every turn, and even though she never takes credit, I cannot imagine what the last year would have been like without her. Overall, Team Nico raised over $6,000.00 for CureSearch. Salt Lake City raised over $106,000.00, and CureSearch said this was the most successful grassroots fundraiser they had seen in over ten years.
After this post, I am attaching a slideshow of pictures from the Walk and a picture of our dear friend Adriana, who ran her 10th (that is tenth!) marathon this year while championing our warrior on her shirt. I think the day was a success. I am exhausted, and going to bed now.
RSS Feed