Little Hero at UCSF by Wednesday Kirven

Last week I had the opportunity to go with my sister and her family to San Francisco for what has become routine to them and their son, Camden, undergoing treatment for retinoblastoma, a cancer of the retinal eye tissue. He was four months old when diagnosed and this trip to UCSF would be number 25 for them in the last 19 months. My sister, January, and her husband, Steven, have three beautiful children that I consider partly mine because they let me. Camden’s oldest sister Trisha, is 19, his other sister Taylor, is 7, and Camden turns 2 today! I wanted to go with them on this trip because of all the times they had been I had never been able to go and I wanted to see what it was like. I wanted to see the hospital that they frequented so regularly and the “Family House” in which they stayed each time they went. I wanted to be able to visualize it all when she called me every month with a report after their trip. But what I saw was so much more than that.

I saw the long drive. I saw the expensive gas fill ups. I saw the city through the car windows on the way to appointments and sitting in traffic. I even saw friends the night we got there, which was fun for everyone. I saw Family House, a hostel-like home where families coming into the city regularly to treat their sick children can stay for free. I saw the kindness of strangers who had donated food, clothes, diapers, and toiletries to the occupants of Family House. I saw the hospital and multiple waiting rooms. I saw other children in the waiting rooms missing limbs and hair but not missing early morning smiles when they witnessed the absolute cuteness of the little ones with us. I saw the nurses and the doctors and halls that you pace to occupy small children that have a hard time waiting for doctors who are running an hour behind schedule. I saw the gift shop that you pretend is a giant mall with hundreds of interesting things to point to or pick up and possibly use to distract them for just a few more minutes. I saw the hospital cafeteria, where you sit and try to eat something because you really are very hungry after waiting all morning (because if the baby can’t eat before his appointment, it’s not really fair for anyone else to eat in front of him) but that you can’t really stomach because you’re nervous for what’s happening with the child who is so amazing behind “hospital personnel only” doors. I saw an incredibly brave mother and a courageous father who did not know what they could do until they had to do it. I saw an adoring and patient sister who is supportive and nurturing while still confused by all of the adult and medicinal vocabulary and who is still coming to grips with not being the baby of the family and him always getting more attention from everyone else, but being a “sick baby” getting pretty much all of it from visitors and strangers. I saw the anxiety of an oldest sister and other family members at home coming through on phone calls and texts awaiting any news. I saw the pride of a little girl who lost her two front teeth in one day and the wheels of her head turning as she imagined what the tooth fairy might leave for her. I saw the hope that brightly illuminates this otherwise would be dark community of families that are all fighting for the lives and health and happiness of their beautiful children. I saw a hero of a little boy who is too familiar with things done to his body regularly that children should not be so familiar with.

Since diagnosis it has been about 19 months and has included: 19 Exams Under Anesthesia, 1 broviac surgery, 4 rounds of systemic chemo, 3 IntraArterial Chemo Therapy Surgeries, 28 times under anesthesia, 29 nights in the hospital, 25 trips to UCSF, 5 Valley Children’s Hospital ER visits, 1 ambulance ride, 16 IVs, 28 shots, 1 emergency broviac removal surgery, 9 platelets transfusions, 3 red blood transfusions, 4 MRIs, and 38 blood draws/labs. We have all been hoping and praying that through each of his treatments he would come out with as little damage done to his precious body as possible and that in the end the tumors would shrink and he might not only survive but that he would be able to see! Today was his 2nd birthday! Birthdays mark milestones in every child’s life but this feels more exciting! When he was first diagnosed, the doctors kept talking about how things might change and even be more promising when he turned two and at the time it seemed SO far away. Now it’s here! He is growing and happy and chatty and LOOKS otherwise healthy as he discovers the world through his thick round glasses (that I think make him even cuter but I might be biased). And through it all we keep reminding ourselves of how happy we are that the tumors haven’t been as aggressive these last few visits and that we don’t know exactly how much but we know HE CAN SEE! Praise God! But what he doesn’t know is what WE can see because of him. And for that, I am forever changed and especially grateful. Happy Birthday little man! You are SO loved!

Read more about Family House heroes at http://www.familyhouseinc.org/family-stories.html