Saturday, August 28, 2010
I've never been good at accepting help, asking for help, or even at admitting that I need help. Neither is Kirk. In school, I would much rather spend hours trying to figure something out on my own than ask for help from the teacher, and admit that I didn't know everything. For many years, Kirk would do everything he could to avoid calling tech support when he had a problem with his computers. Over the last few months, we've been on the receiving end of countless kindnesses, gifts, hugs, cards, letters, and more. It's been hard to accept the help, but it's been wonderful knowing that there are so many people wanting to help, reading the blog, praying, and using their talents to help make this road lighter for us. It's been reassuring to us - as well as humbling and overwhelming.
When I was little, I often made my dad tell stories about growing up during the 1930's. I loved hearing about his life and the way people lived in the 'olden days' - before electricity, cars, phones, fridges. I especially loved the concept of 'barn raising' type activities where entire communities come together to work on a project and help each other out. Not only does a big job get done quickly, but the community is strengthened, and the workers get to experience the pride and satisfaction that comes from working together. That kind of thing doesn't happen as regularly now, but it's cool that we got to see some of that spirit last week. It's humbling to be on the receiving end of it.
Just before I left for Saskatoon on the day we got the pathology report, I ran to get something out of our laundry room and saw water dripping down from the ceiling. The kids were finally loaded into the van (which we'd had to wait for while the tires were being replaced due to the flat tire the day before), and we really needed to get to Saskatoon to be together. Instead of delaying our trip, I called my brother. He found that our shingles, which we thought would last another 2 or 3 years, were shot as a result of the extrordinarily rainy (and windy) spring we had.
Then, my wonderful brother gathered together a group of amazing volunteers to re-shingle our house for us. Words can not express how thankful we are to these people for all the work they put in. They got the whole house finished in one day - just last Saturday, August 21. We weren't here to see them, but we do have pictures. There were some who worked on the roof, some who loaned the equipment, and some who made lunch, snacks and coffee for the workers. Thank-you to everyone.
We hope that you were all blessed through doing, and we pray that we will be able to pay it forward (or back) sometime soon.
Monday, August 23, 2010
We had a great few days at the lake. I wasn't sure I wanted to go, but we promised the girls we would be there to pick them up from camp. It turned out to be a much needed break. The girls did an awesome job in the musical they learned at skills camp and it was great getting to see friends from the lake again. Kol had a blast seeing his 'best friends' and all of the counselors from last year. We got to go tubing (my arms are still a bit stiff), and Mari even tried to water ski. I realized how hard it is for me to just sit and do nothing but be with the kids. I felt guilty just sitting - I kept thinking that I should go find something to do - like read one of the books we've been given, clean the kitchen, or write a blog post. It was a good lesson to learn.
Tomorrow Birgitte has a follow-up EEG, so some of us will be making another trip to Saskatoon for that, but then we have no more medical appointments scheduled until Kol's MRI on September 23rd. It will be nice to be able to spend a large chunk of time being normal. Normal is good.
Birgitte seems to be tolerating her medication well, but we have noticed several behavioural changes in the last few weeks that we're not happy about. It's hard to tell if they are due to all the changes, travelling, and upheaval throughout Kol's treatment, or if it is due to side-effects of her medication. I hope we can figure it out soon, though. I miss Birgitte.
I'm working on another blog post, which should be finished soon. I was hoping to get it done today - but I'm going to go spend time with the kids, so it won't be. It's also getting really long; I have so much to say. It's about Blessings.
Tuesday, August 17, 2010
Kol went out with a bang today. Kristen had asked the radiation therapists on Monday if we could bring in a few balloons to celebrate Kol’s last radiation treatment. They decided to take charge of the celebrations themselves.
Today, when they came to get us from the waiting room, one of them was dressed up in a black cape and Darth Vader mask:
Kol arrived at the radiation therapy suite to find more of them with various Star Wars accessories, including blasters and clone trooper helmets.
While Kol was in treatment, they set up a balloon drop and handed out noisemakers, and when he came out of the treatment area, they let them drop:
After celebrating (with a CD blasting “We Will Rock You” and “Taking Care of Business”), all that was left was for Kol to ring the bell:
For those not in the know, this is a tradition in the radiation therapy department – there’s a bell mounted on a plaque in the hallway by the waiting room, and when someone has their last radiation treatment, they ring the bell, and everyone applauds.
Thanks so much again to the “Meadow” team for taking such good care of not only Kol, but all of us.
The rest of the day was filled with fun – we went out for lunch, gave Kol some new LEGO, went out for a movie, and then ordered pizza for supper.
The future is still uncertain, and this is only a short break – we’ll be back at the cancer center in about five weeks to start a more intense chemotherapy regimen (that will last for about six months), with a follow-up MRI in late September. But all of that can wait – for now, it’s time to relax, head up to the lake for a bit, and just enjoy a quiet time together.
This was a good day.
Monday, August 16, 2010
Sunday, August 15, 2010
It's just five of us this week - Julianna and Mari are both gone to Kinasao for Skills Camp, so we won't see them until Friday afternoon. We're thinking of heading up to the lake on Tuesday or Wednesday and stay at Mom and Dad's cabin for a bit, or we might just run up Friday afternoon to get the girls - either way, we'll at least get to say that we went to the lake this week.
Kol continues to be in good spirits and dealing well with the treatments. His blood counts on Wednesday were back up in the safe zone, so he was able to go to VBS on Thursday and Friday morning in Outlook - he had a blast, it was so good to see him up singing with the other kids at the closing gathering Friday.
The meeting with Birgitte's neurologist went well last week - as expected, there was nothing out of the ordinary in her MRI. The neurologist said that her personality changes could be a side-effect of her medication, but they might just be temporary while she's adjusting to it. There's another EEG scheduled for her later this month, which should give an indication as to whether the medication is helping.
So, a somewhat busy week coming up, but then things might actually have a chance to settle back into some sort of normal, at least for six weeks. Kol is supposed to get an MRI about a month after the end of radiation treatment - mostly to check on the swelling, etc. from the radiation - and then another MRI two months after that to get a better look at the tumor. Chemotherapy should start sometime around Kol's 8th birthday (September 27th).
Thanks again for all of your prayer and support, and thanks for all the positive feedback from the video post last week - we'll see about doing something like that again in the future, it was a lot of fun!
Sunday, August 8, 2010
- The number seven has always a certain mystique about it - seven days of creation, the seven wonders of the ancient world, seven seals, seven dwarfs. This weekend we've realized that our seven-year-old son, from our family of seven, has only seven radiation treatments left. It's hard to believe we're this close to the end of this phase of treatment - we're really looking forward to it being over.
Kol continues to do well - he has had only a few short-term side-effects from the treatments (nausea, hair loss, lowered blood counts) that are either easily treated or tolerated. There are still long-term effects that we won't see for quite a while, but for now, he is such a trooper, and we are proud and thankful.
- This past week saw me (Kirk) on the road a lot - to Buchanan and back on Monday for a classmate's funeral, to Cypress Hills on Tuesday with Julianna and Mari for the Friggstad family reunion, back to Saskatoon Wednesday evening for appointments Thursday morning, and then back to Outlook Friday evening. Julianna and Mari stayed on in Cypress with my dad until Thursday, then went to Regina to visit their cousins (especially newborn Kjell!), finally returning home Saturday night. This coming week promises to have less of a "road warrior" schedule - we're in Saskatoon until Wednesday, then we'll drive in for Kol's appointments Thursday and Friday afternoons so that he can spend at least a couple days at VBS in Outlook (if his blood counts are high enough). Julianna and Mari are staying in Outlook and going to VBS all week.
- Speaking of blood counts, Kol's counts were on a roller coaster ride again last week. Tuesday, they were high enough that they were able to resume the final two spinal radiation treatments, but by the end of those treatments they were so low that we had to keep Kol at home all weekend to reduce his exposure to possible infections. Now that the spinal treatments are all done, the blood counts should start rising again - and Kol doesn't have to have daily bloodwork done any more.
- Birgitte didn't come along to the Friggstad reunion last week - she started running a fever the Saturday before the reunion (July 31), and it still hadn't broken by Tuesday morning, so she went to Saskatoon with Kristen, Kol, and Annika. Sandra (Kristen's mom) also came along to Saskatoon, so she was able to take care of Birgitte while Kristen took Kol to his appointments. Fortunately, Tylenol kept the fever under control until it finally broke on Wednesday.
This Monday morning (August 9) is Birgitte's follow-up appointment with her neurologist. We'll likely hear if anything of interest showed up in her recent MRI scan, and we want to talk about the side effects of her medication - this past week, we've really noticed changes in her personality and behavior that seemed to coincide with an increase in her dosage last Sunday. Hopefully we can find out if there's anything that can be done, if these effects are temporary, or if there's more going on than meets the eye.
- Our 16th wedding anniversary was last Friday, so we went out for supper Thursday night at Moxies. Sandra was still with us in Saskatoon, so she watched Kol and Birgitte for us - Annika hasn't started any solids yet, so she had to stay with Kristen. It was good to get a little time together without most of the kids. :-)
- BONUS VIDEO!
- Kol and I were alone at home Sunday afternoon (Kristen and the girls were gone swimming), so we started playing around with the webcam. It's not a professional production by any stretch of the imagination - the microphone didn't always pick up Kol's voice, the lighting isn't great, and there are a few seconds at the beginning where I stare blankly at the camera until I realize that it's recording - but we had fun recording it, and we hope you enjoy it:
Tusen takk for bønnene deres og støtte - thank you very much for your prayers and support.