Tuesday, June 29, 2010

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.

Monday, June 28, 2010

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.

Sunday, June 27, 2010

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!

Thursday, June 24, 2010

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.

Tuesday, June 22, 2010

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.

Monday, June 21, 2010

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.

Saturday, June 19, 2010

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

Friday, June 18, 2010

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.

Tuesday, June 15, 2010

Another CT Scan

We just got a call from the Cancer Clinic this morning. The Radiation Oncologist would like another CT scan - the last one still showed post-op swelling and the hydrocephalus or excess fluid in Kol's brain. The scan is scheduled for tomorrow at 3:00 - it will be his fourth one. It is amazing and scary to us how quickly Kol has gotten in for CT scans, and MRIs. Of course we are impatient, and want things to move quickly, but it really seems urgent when even 'jaded medical staff' bypass the normal channels for him. I think that is what shocked me most when Kirk told me about the mass in the first place - it was certainly a shock that Kol had a tumor, but it was really shocking that they were sending him for an MRI immediately. In contrast, Birgitte's neurologist wants her to have an MRI, but said that because there is such a long waiting list, that would probably be in about 4 months.

As always, we thank you for your prayer support through all of this, and we ask for continued prayers for this CT scan. It would be wonderful if the doctors couldn't find the tumor on tomorrow's scan. Whatever happens, we know that Kol is in God's hands, and He is capable of all. God has already worked a miracle in our lives by creating such a wonderful support group around us, and for all the prayers and answered prayers in the last 20 days. To God Be The Glory for what He is doing.

Monday, June 14, 2010

Time for updates

It's been a few days since we've had any news here, so I figured it was time for a new post.

First off, there's nothing particularly momentous or earth-shattering to report, which is a nice change. We've had a good weekend reconnecting as a family - we've spent a lot of time just being together, watching movies, playing games on the Wii, reading books, talking, laughing, crying. Sunday we spent a good part of the day at the church with the Sunday School picnic - Kol had a lot of fun, although judging from his behavior later that day, he may have overdone things. Still, it was good to see him acting very much like his old self, and good to see friends at church that we haven't seen for a few weeks.

Kol has an appointment with the radiation oncologist next Monday (June 21), and hopefully we'll find out what his treatment schedule looks like at that point in time. We also had a good discussion with our naturopath last Thursday, and we're working on a complementary treatment for Kol, focusing on nutrition and overall health to support his body through the various other conventional therapies that are coming up.

We're slowly beginning to come to terms with everything that's happened, although I still often find myself in denial - it's taken me a while to get used to using terms like "tumor" and "cancer" (and I'm still having problems with that last one), and when someone suggests things like the Children's Wish Foundation my first reaction is "that's for kids that might die, that's not for us!" Obviously, it's taking a while for the seriousness of this to sink in for me. It all still seems somewhat surreal, like a bad dream that I expect to wake up from soon.

My parents and an old friend of the family came down to visit tonight and have supper with us - it was a very nice time, Kolbjorn was very much his old self (driving everyone crazy with "knock-knock" jokes), and everyone being relaxed and enjoying themselves. It felt... normal. Felt good. I'm treasuring these interludes of normalcy between the more dramatic segments of our life, and trying to relax and enjoy them as they come.

Saturday, June 12, 2010

Be it ever so humble...

...there's no place like home. Especially when you see something like this when you get there:
And then you notice that someone has stocked the fridge. And washed dishes. And done laundry. And cleaned the garage. And mowed the lawns. And as you realize that there must be more than one "someone" involved in this, you begin to feel humbled by these acts of service, acts of support, acts of love. And you feel very thankful. Very thankful indeed.

Enough of the third person - time to take ownership of this. We are humbled and thankful, not only for these acts, but for all the love, support, encouragement, gifts, hugs, tears, and prayers that you have shared with us. I don't know how we can ever properly thank all of you, but this is a start.

Now that we're all at home together, we're beginning to "decompress", emotionally speaking - there's been grief, sorrow, anxiousness, anger, and many other emotions that we've been holding back over the past two weeks. It's been a bit rough, but it's been good to start working through these feelings, to start healing. We're probably going to stay inside and not entertain too many visitors for the next couple days - we'll probably go to church on Sunday, but other than that I think we'll be sticking pretty close to home. Call it a "family retreat" or something like that - it'll be good for us.

It's good to be home.

Thursday, June 10, 2010

Make like a tree and get outta here!

Kol was discharged Thursday afternoon! It feels so good to be out of the hospital, to see Kol in his "street clothes" after two weeks of mostly hospital gowns or pajamas, to see the smiles on everyone's faces as we pulled up to Mom and Dad's place, to see him disappear up the stairs to go find the Lego pile upstairs... yeah, it feels good.

We're going to stick around here tonight, and then head back to Outlook sometime on Friday. It'll feel so good to be back home...

Quick update on Birgitte

Birgitte had an EEG scan Wednesday morning, and we met with a neurologist Wednesday afternoon. The diagnosis is generalized epilepsy, which doesn't come as much of a surprise to us, but it's good to know for sure. The doctor has prescribed some medication (the name of which escapes me at the moment) that should prevent any further seizures, supposedly with very few side effects. We'll have to add this to our list of things to research before we make any decisions here as well, but in light of everything else that has happened in the past two weeks, this doesn't feel like a very big burden. Kristen or I will update a bit more on this soon.

Time for some sleep. Thanks again to everyone for the prayers, encouragement, visits, gifts, etc. over the past two weeks - our whole family has been so blessed by your support, it's hard to find the words to express how grateful we feel, so all I can say right now is a simple "thank you", and good night.

My boy is coming home soon!

Kol is likely to be discharged on Thursday morning, and I feel practically giddy about it. I went to WalMart to pick up a few things after leaving the hospital Wednesday night, and all I could think was "My boy is coming home!" and wander around with a goofy grin on my face. OK, so I often walk around with some sort of goofy expression on my face, but there was a definite undercurrent of joy behind this goofy look.

Tentatively, we're planning on staying in Saskatoon at Mom and Dad's for Thursday night - I managed to get an appointment for Kol with my naturopath on Thursday afternoon, so it would be nice to be able to relax and spend some time as a family together again outside of the hospital without having to go through the hassle of getting everybody packed up right away and trying to get back home to Outlook before it gets too late. Ulla and her girls came up from Regina Tuesday night as well, so it will also give us more opportunity to spend time with them.

There are still big decisions to be made regarding ongoing treatment for Kolbjorn, but right now I can only think one thought - my boy is coming home, and that makes me feel happy.

Wednesday, June 9, 2010

Decision time

These last 2 days since we got the pathology report have been the hardest for me; I've been trying to process what we've been told, and it is overwhelming. It was easy to sign the consent for the brain surgery; Kol was in pain, and would have died without it. But this next decision is tough. Not only do the treatment recommendations from the oncologists seem to be quite aggressive, but because this type of tumor, in the place that it is, is rare enough that they really have no clue whether or not it will respond at all to any kind of treatment. I don't know how I can agree to put Kol through months of pain and sickness if it's not even going to do anything. But how can I not?

Here's some more info about the tumor, as I understand it at the moment. This is subject to change, because there is a very good chance I missed something, or misunderstood what we were told. The tumor itself is a neuroblastoma sub-type of a PNET tumor. I have it written down somewhere what PNET stands for, but I forget now - I'll let you google it if you want to know more. I'll be doing that too, soon. This kind of tumor is rarely seen in the brain, and are usually in the lower area of the brain. Kol's was near the top. Tumors where Kol's is don't respond as well to treatment, although the neuroblastoma sub-type does tend to respond slightly better to treatment elsewhere in the body.

The cancer clinic belongs to a group of treatment centers called Children's Oncology Group (I think) that collects and shares data on different types of cancer and the different treatment protocols. Any center that belongs to this group - which appears to be most in North America - will recommend the same treatment.

I'm falling asleep, so I'll try to post more tomorrow - about the results from Birgitte's EEG and visit with the Neurologist.

Unplugged (and other pictures)

"I've got no strings
To hold me down
To make me fret, or make me frown
I had strings
But now I'm free
There are no strings on me"

Michael Kusugak, an Inuit storyteller and co-author (with Robert Munsch) of "A Promise is a Promise", stopped by the pediatrics ward on Tuesday to tell stories to the kids - Kolbjorn and Birgitte got their picture taken with him afterwards. He was in Saskatoon for the Children's Festival.

"Words cannot possibly express how utterly delighted I am to be here right now."

Small victories, big challenges

Kol continues to make progress in his recovery from the surgery. He is now completely "unplugged" - no IV lines, no feeding tube, no electrodes for heart monitor, no EVD, nothing. He's eating pretty well, talking more, and has been working with a physiotherapist and occupational therapist to get up and moving again - he's walking unassisted for short distances (a bit slowly, a bit shaky, but on his own).

Today we had a ton of visitors - Wes, Andrew, Belinda and Thomas, Christy, Brette, Christine and Samuel, and Auntie Robin all stopped in at various points through the afternoon (at least one person asked if I was going to post their name "on the blog" - here you go, but you need to share the spotlight with everyone else). The room seems to be packed full with gifts - books, puzzles, games, movies, CDs, food, and more. It's been wonderful to see all of you (even if some of you never actually got to see Kol due to doctors and physio showing up during visiting hours).

I also drove back home to Outlook for an hour or so this evening to try to see Julianna's band concert. I arrived just in time to hear about half of the last song that the grade 6 band performed - even though I missed most of the performance, Julianna was very excited to see me there. It was also good to see a few familiar faces - I just realized that I hadn't been back home to Outlook since the night I took Kol in to the ER 12 days ago. I also realized that I had completely forgotten to ask anyone to feed my fish that was in my office, so there was a quick "burial at sea" tonight. Poor fish. Once life gets back to a more regular schedule, I'll see about getting a new one.

We met with an oncologist this afternoon to talk about ongoing treatment for Kol. They're recommending radiation therapy followed by chemo. The cancer is relatively rare - the oncologist said they would see a case of it maybe once every five years here in Saskatoon - so there isn't necessarily a lot of data on how effective the treatments might be. There are lots of unknowns, and some pretty big decisions to be made soon regarding treatment. I'm hoping to talk to my naturopath as well this week to see what complementary and/or alternative therapies might be options as well.

On another note, Birgitte is going in for an EEG scan Wednesday morning at 10:00, and we'll be meeting with a neurologist probably that afternoon - she was scheduled for the EEG next Tuesday, and the neurologist appointment the Tuesday after that, but after her seizure on Friday they were able to move her appointments up. Hopefully we'll get a better idea of what's happening there as well.

Thanks again to everyone for the outpouring of prayers and encouragement. We are so deeply grateful to you all, and can only hope that one day we can be as much of a blessing to you as you have been to us.

I'll close this post with part of a choir song that has been stuck in my head tonight (if memory serves me correctly, I think I sang this in LCBI Concert Choir or the Zion Lutheran chorus), called "Thy Will Be Done" by Joyce Eilers:

Sometimes the load is heavy,
And sometimes the road is long.
And sometimes, Lord, this heart of mine
Is not so very strong.
But Thy will be done, Lord,
Thy will be done.

Father, I do not ask You
To take this cup from me.
I only ask Your guidance
O'er paths I cannot see.
And Thy will be done, Lord,
Thy will be done.

Monday, June 7, 2010

Pathology results not good

The tumor appears to be a grade 4 neuroblastoma - grade 4 being the fastest growing, most aggressive. The one bright spot in this diagnosis is that neuroblastomas normally don't metastasize - that is, they don't spread to other parts of the body. We're going to be meeting with an oncologist in the next day or two - we don't know for sure what sort of treatments they are going to want to do, but radiation therapy is likely, and chemotherapy is a possibility. They probably won't start treatment for at least another week or so, to allow Kol to regain his strength and recover from the surgery. Dr. Vitali didn't want to give me numbers (in terms of percentages, etc.), he emphasized that each person reacts differently to these cancers, so at this point in time I have no idea what sort of prognosis is possible.

I guess it goes without saying that this is not what we were expecting, or at least not what we were hoping for. I'm still in a state of shock. Kristen is still in Outlook until later this afternoon - our "tire guy" should have the van back on it's feet (so to speak) before school is out, and then I believe she's coming straight up here. I haven't told Kol yet about this - I think I want to wait until Kristen is here, so that we can both be there to comfort him and answer his questions. For now, I'm just trying to hold myself together until I can find a safe time/place to let my guard down and start processing some of the emotions that I'm holding back.

Your prayers, more than ever, are coveted. Thanks for your love and support.

Sunday, June 6, 2010

Julianna was right - this time

Someone said tonight that we were being tested. They might be right.

Julianna told Kirk on Friday evening as they were on their way back to Saskatoon after Birgitte's seizure that she had heard bad things happen in threes, and wondered what would be next. Kirk said 3 is a crowd, 2 is enough. Neither Kirk or I really believe the superstitions - anyone can find a pattern if they look hard enough.

I came home tonight with the girls. Julianna's piano recital was tonight, and Mari will go to school tomorrow. Julianna will probably stay until after her band concert. On our way home, we had a tire blow out on us. I drove over something, and we heard a bang and then the van started shaking. Julianna said that was the third bad thing. If that means that this is the end of 'bad things', I'll take a flat tire any day.

We were on 219, just past where the road was down to one lane due to construction. Within 3 minutes after I pulled over, I had 2 trucks with road construction workers stopped beside me. They used the hydraulic jack from one of the trucks, and one of them took out the spare while the other guy took off the old tire. The dirt was soft on the side of the road, and the jack sunk in a bit, so we had to dig some to get the new tire in. There was a spade in one of the trucks. The tire iron in the van was tiny. They had a much stronger, ratcheting one. It probably took less than 20 minutes to get the tire changed, and we made it to Outlook in just enough time to stop at Subway and get to the recital. If I had to change the tire myself, it would have taken forever.

God was watching out for us again. If that tire had blown out 1 minute earlier, we would have been following the pilot vehicle through the middle of construction vehicles, with a whole line of cars behind us and no where to pull over: any later, and I would have had to change the tire myself.

The EVD is out

Kirk already posted that the EVD has been removed. While Kirk and the girls were at church, I stayed at the hospital, waiting most of the morning for the neuro surg. resident to remove Kol's drain. She came around 9:30, saw Kol eating, and had the nurse put lidocaine (freezing) around the site of the drain while she ran upstairs for something, and she said she'd be back shortly. The lidocaine cream takes effect in about 20 minutes, and is effective for about 1 hour. 1.5 hours later, the nurse paged her, and she was in ER. They put more lidocaine cream on, she came back, did an assessment of Kol, and left again.

During the assessment, Kol was able to sit up for about 2 minutes, and, although he is still quite weak, his balance was good. Neurologically, there seemed to be no issues. He is very aware of his surroundings, he hadn't vomited within the last 24 hours, his eyes respond appropriately, his muscle strength is improving, and although he still has some right side weakness, it has been lessening. He still has a constant headache - I think because the pressure in his head has been constantly changing. I hope that it will go away now that the drain is gone and the pressure will be more constant.

The lidocaine had almost worn off a second time by the time she got there at about 12:30. Kol was sleeping, and I crawled up on the bed with him while the resident and nurse pulled the tube out. After all of the waiting, the actual removal was quite anti-climactic. The stitches that held it in place were cut, the valves on the drain were opened, (so it wouldn't create a vacuum and suck out CSF) and the tube was just pulled. He whimpered and squeezed my hands while it was being stitched, but he was so tough. He was more upset at having tape removed than he was at getting stitches in his head.

I'm probably being a worry wart, but I find that I've been worrying more about the drain having been removed than I did about the surgery itself. Maybe it's because I knew the surgery was absolutely necessary. I also felt completely comforted during Kol's surgery. I know the drain had to be removed, too. The risk of infection is greater the longer it stays in, and apparently, if it is left in too long, the normal drain passage way - whatever that is, could get sealed, or plugged up permanently. There were just a few little things that concerned me about Kol's behavior before the drain got removed. He has a tremor in his hands and arms. It was really noticeable when he and Kirk were working together building a LEGO model last night. He was complaining of pressure under where the sutures were - where the bone was removed. It looked a bit swollen there, too. It's probably nothing, but I would appreciate prayers that his body reabsorbs/drains all of the CSF properly.

Even if the CSF doesn't drain properly, we still have options. Kol would need another operation to install a shunt - a tube that will drain the fluid from his head into his leg. It's not a terrible thing.

Flying solo

I'm alone at the hospital with Kol for the next 24 hours or so. Kristen and the girls have headed back to Outlook - Julianna has a piano recital tonight, and Mari wants to go back to school - so it's a "boys' night" for me and Kol. So far, that seems to involve Kol watching "The Lion, The Witch, and the Wardrobe" on the big laptop while I hack around on my little netbook (testing out Ubuntu 10.4 Netbook edition, running off a USB stick). We're complete party animals here.

Kol has had a pretty good day today - ate a relatively big breakfast, had his EVD removed (Kris will post the details later), got picky at lunch, had a good visit with his sisters and grandparents this afternoon, and he's been talking more often and more clearly. There were some low points this afternoon as well - an old bandage (on his neck, where the central line had been inserted) was removed, but it was really pulling the skin and causing him some pain. He also threw up just at supper time, and as part of the cleanup we had to change some of the tape on his feeding tube, which also caused some distress (although not as bad as the other bandage). Overall, though, it's been a good day.

The girls and I went to Rock of Ages Lutheran with Mom and Dad this morning, and at the end of the service they had our family (as well as one other family with someone in the hospital) come up to the front for prayers. The elders of the congregation were all around us, praying for us, laying on hands, etc. It was almost overwhelming - I'm not normally one that enjoys being the center of attention, so in that respect it was somewhat uncomfortable, but at the same time it felt good to be blessed in that way. Thank-you to the Rock congregation for blessing us in that way.

Saturday, June 5, 2010

Continued progress

Some promising things today:

  • Kol has been eating more regular food than the day before, which means that his feeding tube may be removed soon
  • the physiotherapist stopped in and started working with Kol - he was able to sit up on the edge of the bed for a minute without anyone holding him (although our hands were pretty darn close to him in case he did fall over)
  • while he still isn't talking normally, we have discovered that he will whisper words and phrases without too much difficulty, which is making communicating with Kol much easier (although we still end up doing a lot of yes/no or multiple-choice questions)
  • Kol was able to start building his new Lego set (Kristen and I bought one for him when he went into surgery) - his hands are a bit shaky and weak, but he's doing a great job and loving it!
Kristen is on the night shift tonight, and I'll be taking the girls to church Sunday morning with Mom and Dad. Julianna has a piano recital scheduled later Sunday back home in Outlook, so we're thinking that Kristen might take the girls back home, at least for the night, get Mari back to school, take care of a few things at the house, etc. while I stay with Kol. It'll be good for her to get a break from the hospital - she's ended up staying there while I've gone other places (Friggstad "rice mush" gathering, out for supper with the girls, etc.), so she's earned it.

Tomorrow I hope to get my hair cut to match Kol's - I figure I could at least to that to show a little solidarity with him in this. I can't put it off too much longer, though, as his hair is already starting to grow back after being shaved for the operation.

Time for bed - sleep is a precious thing.

More Waiting

Kol had his follow-up CT scan today. It showed that his ventricle(s) is (are? I don't remember if the Dr said just one, or both) bigger than it was on his last one. That's not a good sign. It might mean that his body isn't draining the CSF, or brain fluid properly. However, Kol is doing well - he still has headaches, which is a concern, but he has no hyperemesis, (extreme vomiting) he has good muscle control, his strength is coming back, and he is alert and is able to communicate. The neuro surgical team decided to wait one more day with the drain in, and clamped, and, if Kol remains stable, they will remove the drain tomorrow. The neuro surgical resident said that "He will declare himself in the next day." by how he reacts too being clamped. They won't do any more scans - rather they will judge by his symptoms whether or not to remove the drain.

The best laid plans of mice and men go oft astray

Well. Today certainly didn't go according to plan. Birgitte had a seizure on our way back to Outlook (to take part in the Relay for Life) - not a serious one, she's recovered fairly quickly, but it was enough to make us turn around and head back to the hospital. For a little while I had visions of trying to take care of two kids in the hospital, but thankfully everything checked out fine in the ER and she's now resting at Mom and Dad's place (Mom and Dad came back from the lake as soon as they heard) with Kristen - I'm back on the night shift with Kol.

For those who aren't aware, this is the second seizure Birgitte has had - her first one was back in February, shortly after Annika was born. She was referred to a neurologist, and was scheduled for an EEG scan on June 15 and a follow-up appointment with the neurologist a week afterwards - tonight the ER said they were going to send another referral to the neurologist, so it's possible that they might move us up in priority for the scan and/or appointment. In the meantime, we're going to have to make sure Birgitte gets plenty of sleep and try to manage stress better, as that may be what triggers the seizures - Kristen's sister Regan had similar seizures at around the same age, so we're using that experience as a guideline until we know more about Birgitte's situation.

So, that's how today ended up going. On the plus side, Kol continues to improve - there's a plan in place for weaning him off of the feeding tube, it looks like we're still on schedule for getting the CT tomorrow and probably removing the EVD, and he's been laughing out loud at jokes and movies, which raises my spirits as well as his. At the end of the day, even a day like today, I still have hope and faith that things will continue to improve. Surprising for a cynic like me to say that, but there it is.

Today is gone. Today was fun. Tomorrow is another one.
  -- Dr. Seuss, "One Fish, Two Fish, Red Fish, Blue Fish"

Friday, June 4, 2010

Friday afternoon update

Couldn't think of a more creative title than that, sorry. Blame sleep deprivation for that, I guess. :-)

Kol's been doing OK today - still has some headaches and a bit of nausea, but he's been eating regular food, and it still looks like he's on track for having the drain removed soon. The physiotherapist stopped by today to talk about getting Kol up and moving again - really, he hasn't been moving very much since the headaches started last Tuesday, and hasn't been vertical at all since arriving at the RUH ER just over a week ago, so it's time to get him mobile again. We're also hoping to hear soon from a speech pathologist - it'll be good to hear him talk again (aside from spontaneous outbursts, he still hasn't really talked, but he has been able to write us notes, so it looks like it's just a speech thing). His memory, both short term and long term, appears to be normal, which is good - the neurologist has been asking us to keep an eye on that as well.

I don't think we've posted this before - the tumor that was removed was about 4cm in diameter, so it was pretty sizable.

Kol has really enjoyed all the Well Wishes that everyone has been sending - over the past four days, we've received about 40 messages, and his face has lit up when we've read them to him. He has really enjoyed the jokes that many of you have sent, and has laughed out loud at a number of them (I really, really enjoy hearing that right now!) He has also enjoyed books - we've been reading out loud from one of the books he got from his cousins Thane and Haydn, and Kol read a Bone graphic novel from cover to cover last night (thanks Uncle Leif and Auntie Heidi).

Kristen, Julianna, Birgitte and Annika are over visiting the McWilliams this afternoon, before I take the big girls back to Outlook for the Relay for Life. Mari went back to school yesterday afternoon and today. We'll be at the Relay for Life for most of the evening, but will probably head back to Mom and Dad's afterwards, as Julianna is doing her piano exam Saturday morning in Saskatoon. Mom and Dad are gone to the lake for a couple days - they haven't had much time to relax since getting back from Europe on Sunday, so I'm glad they're getting a chance to get away. Hopefully we'll be getting together with Lynnae this weekend as well. Julianna has a piano recital back in Outlook on Sunday, and a band practice and concert on Tuesday - not sure if we'll be able to make it to those events or not.

Hope you all have a good weekend - I'll probably see a bunch of you at the Relay for Life tonight! Thanks again for all the prayers and support.

Thursday, June 3, 2010

Lessons and tests

Kol is facing another pivotal point in his recovery. The neurosurgeon has clamped off Kol's EVD. We now wait to see if he tolerates that, and if his body starts draining his brain fluid on it's own.

For those who are interested, here's a quick lesson on some of the details of Kolbjorn's brain surgery and treatment, as I understand it. If you're squeamish, feel free to skip to the end.

After Kol's MRI last Friday, and before his surgery he was monitored very carefully, with frequent neuro checks. If he failed one of the neuro checks, we were told that he would be in surgery within 20 minutes to have the EVD inserted. If that had happened, he would have had a second surgery on Monday. The goal, however, was to make it through the night so he could have the EVD inserted at the same time as the tumour was removed. Also, the lesion removal would have been more difficult if the EVD was already in place.

An EVD is an Extra Ventricular Drain. It was inserted because the mass in Kol's head had been blocking the normal draining pathways. That caused fluid to build up, and which then contributed to the headaches. It is a tube inserted into the fluid space beside the brain, and it drains off excess brain fluid. It is a fascinating system. I won't go into too much detail, because I honestly don't quite understand it all. Basically, the tube drains into a vial that can slide up and down on a base that hangs from the IV pole. The bottom of the base is hung at the level of Kol's ear. Every time that he moved or slid down on the bed, was transported (like for a CT scan) or whenever the head of his bed was raised or lowered, they had to change the level of the collection vial. They used a lazer level for that. If the vial was too low, there wouldn't be enough pressure, and fluid would drain too fast - the drain would act kind of like a siphon. Too high would cause too much pressure, so fluid would continue to build up. Every change in pressure would cause his headache to get worse.

Yesterday, once the fluid started running clear, and there was no more blood in the fluid, the pressure was increased. Kol tolerated that relatively well, although he did vomit this morning. The increased pressure may or may not have contributed to the vomiting. However, there was much less fluid output per hour after the pressure was increased, which was a good sign. Because there was less fluid, they were able to clamp off the drain around 1 PM, which would hopefully force Kol's body to start draining on it's own. If it does, that's great. If not, he's looking at another surgery to install a shunt, or tube which will bypass the clot and drain it for him. The EVD can only be left in for about 7 days - 10 max, before the risk of infection and permanent blockage is too great.

He will be in more pain as this happens. After 48 hours of the tube having been clamped, Kol will have yet anothet CT scan to see if there is build up, or if it's draining. That will be on Saturday.

I have some pictures of the EVD, but I'm too lazy to upload them and try to figure out how to post them tonight. I'll leave that to Kirk.

Please pray that Kol's body starts functioning normally.

Praise God for all the blessings we have experienced through all of this. We Thank Him for all of the answered prayers.

I'm going to close with the words of an old hymn that's been running through my head much of the week.

To God be the glory, great things He has done;
So loved He the world that He gave us His Son,
Who yielded His life an atonement for sin,
And opened the life gate that all may go in.


Praise the Lord, praise the Lord,
Let the earth hear His voice!
Praise the Lord, praise the Lord,
Let the people rejoice!
O come to the Father, through Jesus the Son,
And give Him the glory, great things He has done.

Great things He has taught us, great things He has done,
And great our rejoicing through Jesus the Son;
But purer, and higher, and greater will be
Our wonder, our transport, when Jesus we see.

Bite-sized updates

If you look over to the left sidebar, you'll see that we've started doing quick status updates on Twitter - if you're a Twitter user, you can follow @KolUpdate to keep up-to-date. I'm hoping to get things set up so that new blog posts will create a new tweet, but probably won't have that ready for another day or so.

If you don't use Twitter, no worries - you'll see the five newest updates in the sidebar, and you can click on the "Follow me on Twitter" link to see older updates.

Wednesday, June 2, 2010

Down and up

If this morning was one of the worst times so far, this afternoon was one of the best. Kol's 2 neighbors were discharged, so it was quieter. I had a long talk with the surgical resident who saw Kol in the E.R. and who observed Kol's surgery. Coincidentally, he also worked at Honey Bee in Frontier, and his brother and sister went to L.C.B.I. I met a nursing coordinator, who had lots of good info for me, and a better estimate of timelines. The recreation therapist came by and introduced herself, as did the dietician. They all had good info, and were really helpful, which made me feel lots better.

I had been worried that Kol hadn't been getting much to eat, because he hasn't wanted to eat much since they stopped feeding him through the NG tube before his MRI. They had been trying to give him fluids which, aside from popsicles, he doesn't really like. He's such a picky eater. We decided to restart feeding him through the feeding tube just to give him something while he is slowly starting to eat more on his own. He can eat and swallow, but his throat is sore, and he's not wanting to eat much.

All of these made me feel better, but absolutely the bestest part of the day was when the girls came to visit. They were so happy to see him, and they are no longer so intimidated by the hospital and all of the tubes. The nurse made an exception to the 2 visitor rule, especially since the room was empty, and we all got to be here - with both grandmas, grandpa, and Auntie Robin. Kol was happy to see them, he was awake, and alert, and was giving Annika his special tummy pats. Julianna and Mari took turns reading him the Well Wishes that were delivered today, and all of the kids were fooling around. Kol was smiling at some of the messages, and he was awake for longer than he has been since last Tuesday.

God is good.

PICU withdrawl

This morning has been tough for me. I think reality is starting to sink in, and I'm no longer in business mode. Everything has seemed almost surreal up to this point - like it's all a dream, and not really happening. Maybe I was in denial - still not quite letting myself believe that Kol was in as bad shape as he was. That he's have the surgery, recover, and we could get on with our lives.

When the charge nurse came to talk to me this morning, she said sometimes families who transfer over from PICU go through a bit of PICU withdrawl. She's right. In PICU, there was one nurse whose job it was to look after Kol. Just Kol. He had a room to himself, and the sliding glass doors shut out any sounds from other patients if they got noisy - which rarely happened. Visiters were limited, and the staff were all really friendly and calm.

The general ward is busy, and noisy. There is one nurse looking after 3 patients in observation room that we are in. Both of the other patients were watching movies, which, after the virtual silence of PICU was jarring. There were machines beeping constantly; admittedly some of them are Kol's monitors, but they're louder than the ones PICU used.

Kol's recovery also seems to have slowed a bit. Maybe I was just expecting too much. Kol wasn't as alert last night, and was complaining of more pain. He was probably groggy from the sedative they gave him for the MRI, but he wasn't as alert as he has been. He got morphine this morning, and he was happy, moving easily, and playing with Annika a bit, but within 30 minutes of the shot, his headache was bad again. I'm also starting to be concerned about a whole lot of other things that aren't an issue yet.

Mmmmmmm, popsicle...

Yummy popsicle, gotta sleep now.

On the move

Kol moved over to the general pediatric ward at about 4PM today - he's in the observation room, which means that he's being monitored closely, but not quite as closely as in PICU. Leaving PICU is a little bittersweet - we're so happy because of the progress that he's made, but at the same time I miss the nurses and other staff from PICU. No disrespect intended to the nurses and staff in the regular pediatric ward - it was just so reassuring to know that there was someone whose only job was to watch over our son and make sure that he's still OK, and now we have to share the nurses with the other patients. Guess I just liked that he was the center of attention. Also, the ward has set visiting hours (2:00 to 8:30 PM, I believe), whereas the PICU had no restrictions on when people could visit, so that means we'll have to plan and co-ordinate visits a little better - fortunately, the visiting hours don't apply to the parents, so we can still spend as much time as we need with Kol and come and go as needed.

Kol's been pretty quiet this afternoon and evening, sleeping quite a bit. I hope that's due to being sedated for the MRI. He did manage to eat some "real food" today, though (a popsicle and a bit of ice cream), so that's a good sign.

The extended Friggstad clan threw a "rice mush" party tonight at Hagens' - basically an excuse to get the family together. Kristen insisted that I should go, and I'm glad she did - it was great to touch base with cousins, aunts and uncles outside the hospital walls.

Finally, I'm a little frustrated with our laptop - it's having trouble getting a WiFi signal in the pediatric ward, even though my iPod Touch and my Acer netbook are able to connect. Admittedly, the signal is still pretty week, but considering that these supposedly low-powered systems are able to connect, I'm quite disappointed that the laptop isn't. I know I've got the settings right - I've been able to connect sometimes, but not nearly as consistently as my other devices. Not sure what to do about that.

Kristen's taking the night shift tonight at the hospital, and I'm at Mom and Dad's to sleep tonight. I think I'd better wrap this up for now. Thanks to everyone for their prayers and encouragement.

Tuesday, June 1, 2010

Shock and awe

"The earnest prayer of a righteous person has great power and produces wonderful results." James 5:16b NLT

It is almost 9:15. Five days ago, I watched as Kirk backed out of the driveway, on his way to RUH to get Kol seen by a pediatrician. In spite of all the worry, I was relieved that we would finally find out what what causing Kol so much pain. As you know, the answers weren’t at all what I expected. The last few days have seemed like a bad dream. Through it all, it has been wonderful to know that there are so many people supporting us. I am amazed, overwhelmed, and completely humbled by the support we’re getting. We are constantly hearing about groups who have been praying for us and Kol, about prayer chains being activated, people giving presentations in their church. We’ve gotten e-mails and letters and phone messages. In spite of the shock and worry, I have been surprisingly calm. I know that is because we have had so many people praying. Kol’s progressing very well, and I know that is because God is answering your prayers. Thank-you for your prayers. God is good.

To God be the glory, great things He has done.

Progress continues

Kol just went for his MRI scan, and he'll come back to PICU afterwards to recover - they were hoping that he would only need sedation and not general anesthesia this time, which should make recovery easier. It's pretty likely that he'll be moved over to the general pediatrics ward later today.

He's also been unplugged a bit - a couple different lines have been or will shortly be removed, and they plan to try to get him to try eating "real food" (ice cream, ice chips) later today as well, which means the feeding tube could also be removed soon. I know that's one tube that he isn't very fond of, he'll probably be happy to be rid of it.

Kol's right-side weakness seems to be improving - he's using both hands much more often, and his smile is a bit more balanced.

We just heard that Kol is on his way back from the MRI, so I'll cut this update short.

A couple other things

I just wanted to say thanks again to all of you for your comments and messages to Kol and to our family - we all really appreciate it! If you'd like to send a special message directly to Kol, you can use Well Wishes - messages sent through there are printed out and hand-delivered to him in his room. We've received one message through Well Wishes already - it sure made Kol feel special.

Also, Julianna, Mari, and I are still planning on walking in the Cancer Society Relay for Life this Friday and Saturday (June 4 - 5), if you'd like to sponsor us you can do so from the Equinox Cast of Characters team page. Thanks!

...and a quiet night...

An uneventful night last night for all of us - Kristen got a decent sleep at Mom and Dad's, I got a half-decent sleep in the PICU, and I think it went pretty well for Kol. He's still dealing with some pain, so he's still getting Tylenol or morphine occasionally - the morphine makes him pretty sleepy, so that helps too.

Other than that, there's not much news - the MRI is still scheduled for 1:30PM today, and hopefully he'll be out of PICU after that.

Before I forget again, I want to give a  big shout-out to the PICU nurses who have taken such good care of Kol over the past few days (Sam, Scott, Jamie, Stephanie, Deanna, Teresa, and Twyla) and to the doctors and surgeons as well (Dr. Vitali and Dr. Ogle, and others whose names I've unfortunately forgotten) - thanks so much to all of you!