Tuesday, July 13, 2010

Five down, twenty-five to go

It was a busy day today. We left for Saskatoon this morning in the rain, which turned out to be a blessing in disguise - because of the rain, most of the crews working on highway 219 weren't out, so there was no need to wait for the pilot truck to go through the work area, which meant that we made quite good time. We stopped at Mom and Dad's, had a chance to chat for a few minutes, then left the three girls there and continued on to the Kinsmen Children's Center.

At KCC, we met with a number of people, including a psychologist (briefly and informally), social worker, physiotherapist, occupational therapist, and developmental pediatrician, all within about three hours. Kol still has some weakness on his right side, but is showing good progress in both gross motor (walking, large movements, etc.) and fine motor (writing, manipulating things with fingers, etc.) control. The visit was more of an introductory visit, and to get something of a baseline - as treatments continue, we may need their services to assess and treat the side-effects of the radiation and/or chemotherapy.

Radiation treatment number five went well. We met with Dr. K, the radiation oncologist, before the treatment, and discussed Kol's post-treatment nausea and reduced appetite. I think we finally got the right Gravol dose figured out today - no nausea, no falling asleep. As for the reduced appetite, that's also relatively common - Dr. K suggested smaller meals more often, sort of a "grazing" strategy. We're a little concerned about Kol's eating - he seems even pickier about his food than he was before, and isn't eating as much, so we're going to have to work harder at making sure he's getting decent nutrition, both quantity and quality. Dr. K also mentioned that Kol will be getting regular MRI scans at three month intervals for at least a year after treaments, then at six month or longer intervals after that.

Tonight we stayed at Mom and Dad's, and rented "Up" after supper for a family movie. Radiation treatment number six is Wednesday morning, followed by the second round of vincristine (chemo). Kol did better at handling the needle poke Monday than he has before, so hopefully the poke for the IV tomorrow won't be too traumatic. The silver lining for Kol is that he'll have an hour or so to kill in the pediatric waiting room at the cancer center, where they have a Wii - he has enjoyed getting to play on that other days when we've had some time between treatments, so that should be a bright spot of his day. We're probably heading home to Outlook soon after, as Julianna has a birthday party Wednesday evening.

In other news, Birgitte started her medication for her epilepsy this week - it starts at a very low dose, and increases over 6 weeks to the full dose, so we probably still have to be extra vigilant about making sure she gets her sleep for a while yet. Her MRI is still next Tuesday.

Kristen and I are feeling more tired lately, so we're trying to get to bed at a decent time - hopefully there won't be as many past-midnight blog posts. We need to try to find more "us" time - hard enough to do with a sick kid, even harder with a sick kid and a 5-month-old baby. We also need to make time for the other kids - they really need more one-on-one time with us than we've been able to give them so far.

Finally, we got hit by another "glitch" last Friday - the power was out when we arrived home, and after the power came on, we discovered that our family Mac computer wasn't booting up. Thankfully, it turned out to be bad RAM, so it was a relatively cheap and easy fix.

Speaking of feeling tired, I see that it's time for me to bring this post to an end. Thanks to all of you for your prayers and support.

2 comments:

  1. Bo and Miena FriggstadJuly 15, 2010 at 9:09 AM

    It is good to hear that he is handeling every thing so well. Sorry that we missed seeing you all in S.toon on Wednesday. love Bo & Miena

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  2. Our thoughts and prayers are with you. We can't begin to imagine what this has been for all of you. Take care. Cindi & Jarl

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