I can't believe we've been home a week already! Last Wednesday, a nurse came to the house to draw labs, and by the end of the day I had received a call from a nurse at the clinic saying that Collin's counts were high enough that we didn't have to give any more Neupogen injections. But because of the Neupogen the night before, Collin was miserable Wednesday night, so Collin, Bill and I didn't get much sleep. I tried giving him a dose of Tylenol for the pain, but it didn't make a difference. I ended up giving him a dose of Morphine Wednesday night, and then a few more throughout the day Thursday. Thankfully he slept much better Thursday night, and was more like himself by Friday. Since then, he has enjoyed being home, playing with Neya, seeing her off at the bus stop in the morning and picking her up from school in the afternoon, playing with his toys, and watching videos of kid's songs on You Tube with Bill. Last Saturday Collin turned 21months old, and the four of us took advantage of the beautiful weather and took a nice long walk. We stopped at the park and thought we'd see if Collin would enjoy some time on the swings, but he wanted no part of them. Since I'm not sure what he sees, I wondered if his vision was part of the problem; if I had double vision, I don't think swinging would make me feel very well. So, we gave up on that, put him back in the stroller, and kept walking, which he enjoyed. We also decided to become a Penn State THON family, to help raise money for Childhood Cancer Research, and we are looking forward to experiencing THON in February as long as Collin is healthy enough to attend.
Today, Collin had an outpatient PT eval. His therapist noticed improvement since the last time she saw him. The session went very well, and Collin worked very hard. He did a lot of leaning and reaching, pulling himself up to stand, playing while standing at a surface, and walking pushing a toy grocery cart. He requires less assistance with standing and walking; now when he walks his steps are much more controlled, and he supports his own weight. We just help him steer the push toy or walker, and help prevent it from getting away from him. If he walks holding on to my hands, I'm really just there for reassurance; he walks and supports himself, I'm not holding him up (at least until he gets fatigued). He will have a few more outpatient PT visits before he is readmitted on Oct. 4, and he has an outpatient OT eval next week.
Tomorrow we meet with the oncologist to discuss the high dose chemo and stem cell transplant, and to sign consent forms for everything. I'm nervous, both about the meeting tomorrow, and the admission in October. I'm not looking forward to going back to the hospital and being separated as a family for another length of time. I don't want to see Collin sick again, or come down with another infection. I'm enjoying the little things, like being able to open the windows and breathe fresh air, hear the birds, etc. I've never been this tired in my life, physically, mentally, or emotionally, and finding the stamina to get through the next round is going to be a challenge. I guess in a way it's like running a marathon; you have to push yourself to keep going even when you think you can't continue. Yesterday, we received a special gift from an amazing person who heard of Collin through a friend. This person is a runner, and just ran a half marathon a few days ago with the Leukemia & Lymphoma Society Team. She had pictures of some very special kids in whose honor she was running pinned on her jersey, including Collin, and those photos inspired her and many other wonderful people to keep running and complete the marathon. Yesterday, we received an envelope from her, and in it was a beautiful card, and her medal from the marathon! She sent her medal to Collin, and said he was a hero and an inspiration. I am so touched by this, and I will bring that medal to the hospital and hang it on Collin's bed, as a symbol of his strength and so that I can look at it every day and be inspired by the strength and love of others. When he is old enough to understand, I will make sure he knows how special that medal is!
Wow! I have just spent the last few hours reading your blog (through your medullo post) I cried as I relived our journey. We are nine years ahead of you. My daughter was born within days of your son, diagnosed a month later and also on my birthday. No radiation, high dose chemo with stem cell rescue.So many similarities. Like I said, we are now nine years out. It hasn't been easy, but we are getting through, day to day, year to year. I wish you all the well wishes and prayers.
ReplyDeleteIf you would like to read my daughters story, she too has a site... caringbridge.org/canada/katelynn