Home Sweet Home

Keith finished out the rest of last week at the hospital and by Sunday, we finally got to say goodbye to overnight hospital stays.

On our way out the door. Wahoo! Keith doesn't look too excited but little sleep left him pretty grouchy.

Keith went home still needing anti-nausea meds every 3 hours and a 1 hour IV antibiotic every 8 hours. Fortunately, we've been able to cut way back on the anti-nausea meds since then and his antibiotic ends today which means I won't be setting an alarm at 3 and 4 AM every night to set up the IV infusion and to flush and remove it. It also means Keith and I will be getting more sleep since I inevitably wake him up every morning with the IV infusion. It means Keith can now take baths again once his port is deaccessed and he won't have an IV hanging off of him which means he'll be much happier playing without it bugging him all the time. We are really looking forward to saying goodbye to the IV antibiotics. Bet you can't tell...

For the most part, Keith has had a great week. He is starting to get a little more energy and the nausea seems to be improving right along with his energy.

Evidence that Keith ate 3 popsicles this week! Prior to those, he hadn't put anything in his mouth for awhile. Signs of changes to come!

I spent most of the week doing things I'd put off until treatment is over. Keith is now scheduled for hearing aids, regular Physical Therapy appointments, a Feeding clinic and an Early Intervention Evaluation for preschool. Whether he realizes it or not, he's still going to be a busy little man! But it will be much easier on him at least.

Currently, Keith is having an end of treatment MRI. (Hence, the reason I have time to post right now.) We expect good things. On Tuesday, we'll meet with his neurosurgeon and the oncology team following their Tumor Boards so we can have an idea of how things look and next steps for our little fighter. Keith will also have a kidney ultrasound and meet with the urologist.

As you can see, we are "done" with treatment but not quite "done". We never really will be and that is okay. The reason it feels okay to me is because I never want to forget what it's like to live at the hospital and what it feels like to be completely at the mercy of blood counts and at the mercy of specialist visits and MRI scans and unpredictable nausea and worse: at the mercy of the unknown. Not because I have a chip on my shoulder, but because every day new families are experiencing their February 1, 2011. They are hearing the words, "Your child has cancer." I want to remember what this whole experience has been like and will continue to be like so somehow our "education" as a family has not been in vain and we can use it to ease the burdens of others in similar situations. Like he has the last 15 months, Keith will be leading the way for our family.

"One of the greatest discoveries of parenthood is that we learn far more about what really matters from our children than we ever did from our parents. We come to recognize the truth in Isaiah's prophecy that "a little child shall lead them." (President Boyd K. Packer. April 2012 General Conference.)

Keith has been leading us all along. Times we felt we were the ones taking care of him, he has been teaching us to have more charity, more strength, more eternal vision. Cole and Ally have lead us in love and comic relief when we've needed it most. We are grateful for our brave little son, his loving and supportive siblings and the training we are undertaking as parents every day.