Force-filled family fun

Robin and Quinten took the whole mob of us to Star Wars in Concert tonight, and it was absolutely fantastic. There were a number of displays around the arena (Credit Union Center in Saskatoon) with various props and costumes from the movies, and lots of fans in costumes (from kids in Halloween costumes to adults who have built their own near-professional-quality outfits) posing for pictures or just walking around. The music was incredible - hearing a live symphony orchestra performing it (along with a choir for "The Duel of the Fates") was almost overpowering. I still get caught off guard at how tightly music can be tied to emotions - from the opening chord of the main theme, I was almost overwhelmed with emotion, bringing back the excitement of watching the movies when I was younger (oh, who am I kidding - it brought back the excitement of watching the movies when I was older too!)

Kolbjorn had a blast. He had a small lightsaber (we wouldn't let him bring the big one) that he waved around in time to the music - during the encore performance of "The Imperial March", he stood up and started conducting with it. The other kids loved it too - the music, the displays and costumes. I think the only disappointment they found in the night was my unwillingness to bring home everything from the merchandise stand.




Big thanks to Robin and Quinten for treating us tonight - we really appreciated it.

The calm

We thought that we would only have about one week at home before the radiation started; we didn't realize how long the planning for the radiation would take.  Now we have 3 more weeks at home before we start the daily treatments, and we start running again.  Although it is a bit worrisome that the tumour will be allowed more time to regrow, the extra time at home is just what we need.  

The first week at home was tough - we were all 'decompressing', and there were lots of pent-up emotions to work out.  That caught me off-guard - I was looking forward to getting to relax so I could process what had happened.  I guess I should have realized that the kids all had emotions to process, too.   It was interesting though, to see again how different each child is.  One refused to talk about Kol's illness - another needed an in depth discussion.  One child's worry/stress manifested as stomach  ailments, another had headaches; all were whiny, and some were suddenly more clingy.  Everyone's emotions were close to the surface.    Annika just wanted to be held all of the time.

It seems that we were in some kind of  "break down" vortex that first week at home, too.  Everything but the dishwasher worked fine before Kol's surgery, but when we got home from the hospital, it seems like everything broke down.  Our microwave stopped working - the timer would run, but it didn't heat - and then it mysteriously started working again.  Our car wouldn't start one day, but the next time we tried it, it started fine,  The clothes washer stopped working, but it was a quick fix.   The "hot element" warning light on our stove started going on and off at random intervals - and was apparently on most of the time we were away, when the stove wasn't being used at all.  The air conditioner in our van works at random intervals, and the breaker in the garage flipped off on its own while we were gone.  The 'bubbler' in the aquarium stopped working, and even the Wii was doing strange things.  And it wasn't just electrical things; our shingles, which we thought had another year or two left, started to leak, and will be replaced this year instead of next like we had planned (too much rain and wind, I guess).  Almost everything is fine now, but it was a strange few days.   At least the fridge worked.  


The second week was much better.  Emotions have stabilized and we're starting to develop our new normal.  Kol is feeling good; he probably feels better now than he has for months.  He is still weak on his right side, but his energy is back, he participates in games and activities with the girls more than he  has for months, and the 'fog' that he seemed to have when we talked to him is gone.  It is wonderful to see.  The change before was so gradual, we didn't really notice how much he was withdrawing - and we just thought he was an introvert like his dad, and preferred to read rather than run (he still prefers to read, but he's not as much of a bookworm as we thought.)  He went swimming at grandma's pool one night (without submerging his head - he has to wait a few more days for the 38 stitches on his head to heal) and he swam for longer than he ever did last year - and he participated in all of the games the girls played, too.


Another bonus of waiting longer is that we have more time to build up Kolbjorn's health.  We've been using this time to do as much as we can to strengthen Kol's immune system and body in preparation for the next phase.  We've totally cut out most sweeteners in Kol's diet - no sugar, aspartame, or splenda.  He can have naturally sweet foods like fruits, as well as limited amounts of stevia - a herbal sweetener.  We've also been trying to only use good fats (coconut, fish and flax) and eat more fish, legumes and raw foods.  He likes smoothies, so I've been 'spiking' them with things like broccoli, avocado, spinach, seeds, omega 3 oil, acidophilus,  and a vitamin/mineral supplement.  He's started taking Juice Plus, and we have some supplements from the naturopath for kidney/liver cleansing and for gutt/stomach support.  We had been doing some of these things for a while, but we've (I've) been lazier the last few months.  Now, I just need to find good recipes that meet all these requirements.  I'm also looking into juicing, and we're thinking about buying a good juicer. 

We'll probably be spending a few days at the lake to re-charge some more before the radiation starts.  More calm.  It should be wonderful.

Weekend update

It's been a while since we last posted to the blog, so here's a quick roundup of news items from our world:

• the service for prayer and anointing on Friday evening was so very good, it was wonderful to have friends and family together to pray for Kol and us, and good fellowship (Lutheran code word for coffee and goodies) was had afterwards
• we had a birthday party for Birgitte on Saturday (she turned 5 on June 20th)
• Birgitte also has an MRI appointment on July 20th as part of the follow-up on her epilepsy diagnosis
• Kolbjorn has a follow-up appointment with a physiotherapist here in Outlook Monday morning, and will be having a spinal tap done at the Cancer Center on Wednesday morning
• we're heading in to Saskatoon Monday evening to see Star Wars in Concert, and the whole family is very excited about it!

I'm not sure what else there is to report on, but if it's important (or at least mildly interesting) we'll be sure to update here. Hope all of you had a good weekend too!

Prayer and anointing

From an e-mail sent by Steven (Kristen's brother) to a large number of people, including members of Bethlehem Lutheran congregation, other residents of Outlook, friends and family across the country:

Just a short note to let you know we will be having a service of prayers for healing and anointing with oil for Kol on Friday night (June 25) @ 7:30 at the church. All are welcome to come and support Kol.

If you can not make it please pray along with those who can at that time. Thanks your prayers are coveted and appreciated a lot.

We would like to extend this invitation to anyone who is interested in participating. Thank-you.

The odds

C-3PO: Sir, the possibility of successfully navigating an asteroid field is approximately 3720 to 1.

Han Solo: Never tell me the odds.

Following our meeting with the oncologist on Monday, my mind has been fixated on odds: "one in three". According to the statistics, one out of three patients who have cancer similar to Kolbjorn's will have their tumors controlled (the oncologist's term) by radiation and chemotherapy. According to the statistics, two out of three will succumb to the cancer (again, the oncologist's term) despite treatment. According to the statistics, three out of three who do not have treatment will succumb. According to the statistics.

Mark Twain: There are three kinds of lies - lies, damned lies, and statistics.

The treatments will not be easy. The radiation will likely cause some swelling in the brain, increasing pressure in the head, possibly bringing back the headaches and nausea that led us to take him to the ER in the first place. There may be fatigue and hair loss, and when the hair grows back it may not be the same as before. They will also be giving him vincristine at the same time, which may also cause nausea and hair loss. There will be daily X-ray scans, and weekly CT scans. There will be a spinal tap at some point, in order to determine if any cells from the original tumor have moved into the spinal column. There are serious long-term effects ("late toxicity", in the oncologist's words) from the radiation that are even more pronounced for younger patients - damage to the pituitary gland (requiring growth hormone therapy), damage to the vertebrae in the spine (causing his torso to not be in proportion to the rest of his body), increased risk of secondary cancers in bone or blood vessels, risk of cataracts, risk of cognitive or memory impairment. It may even be necessary to decide whether to risk damage to the optic nerve (causing permanent loss of vision), in order to properly irradiate the tumor area, or risk not giving the area enough radiation in order to spare the optic nerve.

Kol is going to beat the odds. In spite of all the pain and damage that may come with the treatment, he will survive, and he will thrive. He will beat the odds. He will be the one in three.

It's a date

At Kol's CT Simulation yesterday we got a start date for his radiation therapy.  July 7th at 1:00 is his first treatment.

We also got a call yesterday from the MRI department at RUH, about Birgitte's MRI.  She is booked for July 20th at 7 AM.

Yet another CT

We heard today that they want Kol at the cancer clinic again tomorrow (Wednesday June 23) for his planning CT. The information sheet we got calls it a CT Simulation, and the info they collect will be used by "a treatment planner, medical physicist, and...radiation oncologist" to make a treatment plan. It should take them about 1.5 to 2 weeks to do the planning.

The appointment is at 1:00. At this appointment, they will make his mask - it's made of a white plastic mesh that molds easily after having been warmed in a water bath. It will stretch over his head, and then he gets to wear it for about 20 minutes until it cools. We got to see some masks Monday, and they explained how they make them and what it will feel like when they put it on Kol's face (like a warm wet washcloth). The mask will be used to hold his head in the exact position it needs to be in during all of the radiation treatments. Kol's pituitary gland is within a centimeter of the tumor, and his optic nerve and thalamus are also very close. The Dr. said that he has to focus the beams precisely - within 2 to 3 mm - so any movement or variation in his position is dangerous.

We're still waiting for an appointment for a spinal tap - but since the results from that will only be used to calculate the dose of radiation to Kol's spine, it's not as urgent as the simulation. They are planning approximately 5 1/2 to 6 weeks of daily (weekdays) radiation treatments, the first 3 weeks will focus on the head, then 2 weeks of treatments to the spine, and then back to the head for a few more treatments.

Meeting with the radiation oncologist

This morning we went to the Saskatoon Cancer Center to meet with the radiation oncologist. We talked with him for about an hour, and also spent quite a bit of time talking with the social worker there. Rick (the social worker) was fantastic, talking about so many issues surrounding the treatment (for example, how to claim medical travel expenses for income tax deductions) and giving us a tour of the facility, including the CT scanner and the radiation therapy room. He also gave us a bag filled with all sorts of books (some for Kolbjorn, some for us) and toys (mostly for Kolbjorn) - they really seem to go the extra mile for the kids, it made us feel really cared for.

Kol will be starting radiation therapy in early July. As part of the preparation and planning for therapy, he will have to have a mold taken of his face and head (in order to keep his head in the same position for all the scans and treatments), have another CT scan, and will also have to have a spinal tap to determine if any cancer cells have moved from the ventricle (where the tumor was) down through the spinal column - not looking forward to that part.

We're still processing our conversation with the oncologist - I took two and a half pages of notes, and we also recorded the conversation, so we're going to be reviewing all those things over the next few days. We'll post more once we have a better handle on it.

Big words in Grade IV

We've had several people ask what is meant by "grade IV" tumour - and several who thought grade 4 and stage 4 are the same thing. Here is my attempt to explain it all a bit better.

No tumour in the brain is considered benign, since any brain tumour can cause serious problems. As a result, rather than classifying tumours as malignant or benign, brain tumours are classified by grade. A Grade I brain tumour would be considered benign if it were found in any other part of the body. It is not cancerous. Grade II is a slow-growing slightly malignant tumour. A grade IV tumour is a highly malignant, fast-growing brain tumour.

Kol's tumour is a Grade IV. It is considered a primary brain tumour - which means that it started in the brain. It is also a primitive neuroectodermal tumor (PNET), so named because of the type of cell they believe it originated from. Most PNET tumours are medulloblastomas, and are intratentorial (iPNET) - meaning they are in the lower part of the brain - kind of behind the ears. Kol's is a neuroblastoma subtype rather than the medulloblastoma, and it is supratentorial (sPNET) - which means that it is in the top part of the brain - above the ears.

Are you still following?

We were told before Kol's surgery that most tumours where Kol's is are low grade - meaning either a grade I or II. I found on one website (don't know how trustworthy or up to date it is) that the ratio of PNET medulloblastomas to PNET nueroblastomas is 25:1, and the incidence of a medulloblastoma is 1 in 200 000. If my math is right, that makes a neuroblastoma 1 in 5 000 000. The position of it (supratentorial) may make it even more rare.

Primary brain tumors are not classified into stages like most other cancers are. This is because the size of a brain tumor is less important than its location and the type of brain cell that it comes from.

Any questions - either for us, or ones that we could ask the oncologists? We already have some questions we'd like to ask, but we also know that everyone thinks differently, and we'd like to get as complete info as possible at our meeting on Monday. Post them in the comments, or if you'd rather, you can e-mail them to me. My address is kristen@friggstad.com

It's been quiet around here...

Obviously we haven't had much earth-shattering news to report in the past few days, which is probably a good thing. Here's a few small updates for everyone:

• Kol's CT scan on Wednesday afternoon went smoothly. We likely won't hear anything about it until we meet with the oncologist on Monday.
• The results from Mayo clinic are back, and pretty much confirm the original diagnosis, so no surprises there.
• We got the bandage off of Kol's head that was covering where the EVD (drain) was, and it turns out that the stitches aren't the dissolving kind, so we'll be going in to the Outlook medical clinic this afternoon to get them removed.
• Kol and I have cleared World 1 in New Super Mario Brothers Wii (what marketing genius came up with that convoluted name anyhow?), and are now starting on World 2. I'm sure you were all just on the edge of your seats waiting for that bit of important news! Seriously, though, it's a fun game, and Kol and I have been having a blast playing together.

We're still scheduled to see the radiation oncologist on Monday morning, and hopefully we'll get the treatment "road map" laid out so we have a better idea of what the next few months are going to look like for us.

Thanks to everyone who has helped or offered to help in so many different ways! In the past week we've had people helping us with our garden, doing laundry, watching our kids while we take Kol in to appointments in Saskatoon, and probably a bunch of other things that I'm completely forgetting right now.

And as always, thanks to everyone for their prayers, well wishes, and encouragement. You have lifted our family and carried us through the past three weeks, and I can't imagine how we would have survived this without all of you. Thank you, and I hope that someday we can be as much of a blessing to you as you have been to us.