Friday, July 30, 2010

Detours, delays and flexibility

It's summer in Saskatchewan, which means road construction. The highway we use to get to Saskatoon from home is being widened and paved, which means delays while waiting for the pilot vehicle, bumpy roads, and mud. There is also construction, houses sitting in the street, water main repairs, and all types of road work being done in Saskatoon. It seems like every few days we need to find a new route to the cancer center for our twice daily trips from Connie and Obert's house because of new road closures. We've needed to build in extra time and flexibility to our schedule in order to be on time.

It's been the same with Kol's treatment. There have been more delays than we expected, and detours from the plan. It's a very good thing that these treatments are happening in the summer when we've had the freedom to be flexible, and keep the whole family together, while we focus on getting Kol better. It feels like a full-time job. I have no clue how people can care for a child with cancer with both parents trying to continue to work (full-time or part-time), and juggling school and other activities for the rest of the family - especially if they have to travel for treatment.

The latest bump in the road is Kol's white blood counts. They were low last week, and have been slow to recover. They had recovered enough by Wednesday so that the radiation oncologist decided that it was time to continue with the craniospinal radiation treatment - which is treatment to both the head and the spine, instead of the 'boost' treatment to just the tumour area. The plan was to finish the 3 craniospinal treatments before the long weekend, giving Kol's body 3 days over the weekend to recover. However, on Thursday, Kol's white blood count was lower than it has ever been, which meant that they had to return to the boost treatments for both yesterday (Thursday) and today. That also means that there are still 2 more craniospinal treatments to finish off sometime in the next 3 weeks. The bonus is that Kol didn't need to go in for blood work this morning - just the radiation treatment.

The staff at the Cancer Center have all been very helpful and friendly and are all very capable and willing to answering questions, but if I had one complaint, it's that they aren't the best at being pro-active. I would have loved an explanation or a handout at the start of radiation that gave a more specific overview of when to expect certain side-effects (like many patients start to lose their hair after 10-15 treatments to the head), what to expect if certain common side-effects occur (like needing to come in early for daily bloodwork in the event of low blood counts), and what to do to alleviate problems if you experience them (like use Glaxo Base lotion for itchiness, or pure aloe gel for redness/burning). It would be even better if it came with all the the sample packages they gave us. The radiation therapists know when to watch for certain side-effects, so why not share that knowledge with us? I know not everyone experiences the same side effects, and not at the same time, and patients are all receiving treatments to different parts of the body, so I guess it may be impractical.  It would still be nice to have a bit of a 'heads up' though. It's good that we've had the freedom to be flexible.

Sunday, July 25, 2010

While we're on the topic of hair . . .

Those of you who see us regularly know that Julianna has always had long blond hair.  Well, almost always.  It was dark when she was born, but even then, her hair was longer than most newborns' hair.  She got her first haircut at 5 months, and by the time she was 2, her hair was at her waist.  It has been long ever since.

Julianna's hair is fine and thick, and it tangles incredibly easily.  It takes lots of work to keep it brushed and Julianna has gotten tired of all the brushing lately.  We've been telling her for a while that maybe it should be cut so it's easier to manage.  She hasn't wanted to give up the long hair, so she starts taking better care of it.  For a while.  Tonight, she surprised me by telling me she wanted to cut it.   But, she wanted to cut it only if we could donate it to make wigs for kids with cancer.  We found instructions here, and I cut her hair.  We'll be sending the 10 inch long ponytails we cut off to either Angel Hair for Kids, or Hair For Kids Program.

I'm so proud of her.  She's growing up.

Saturday, July 24, 2010

Side effects

Up until now, Kol hasn't really been showing many side effects of his treatment.  He was nauseous and started losing his appetite for a while, but once he got a prescription for the nausea, he felt better, and his appetite returned.  It was easy for us to believe that Kol would do well with the treatment, and even that he may be lucky enough not to experience the side effects we'd been warned about.

Then came Wednesday, with the low white blood cell count.   We also noticed that the scar from Kol's brain surgery was getting red, and his head was getting really itchy.  On Thursday, one of the radiation therapists asked if Kol had lost any hair yet, if we'd noticed any hairs on his pillow.  We hadn't.  The next morning, there was hair on his pillow.  This morning (Saturday), there were dozens of 1 inch long hairs all over the neck of Kol's pyjamas.  It looked as if he had been carrying a shedding cat around his neck.  He had a shower this afternoon, and now there are patches of hair missing.  He was scared to have the shower, because I had said that it would make his hair come out faster.  He didn't want to lose it.  We had to tell him that nothing could stop his hair from falling out at this point.  Kol decided a shower would be okay when we told him that it would help make his head less itchy.  Aside from a few tears at first, he's taking it all so well.  I can't believe how brave he's being.  I know I wouldn't accept it all so graciously.

Now, I guess we need to start watching out for some of the more serious side effects.  Kol could start having seizures, vision problems, difficulties balancing, fatigue, and weakness.  There might be a lot of swelling in his brain, causing the symptoms (headaches) he had before the surgery to come back.  They might last for several months until the swelling goes down.  Dead cells are not removed as quickly from the brain as they are from other parts of the body, which means the swelling will last for a long time.  What scares me most is that we won't know if he's getting headaches from the swelling, or from a returning tumour. 

There is also the risk of delayed side-effects which might not develop for years after the treatment.  These include: decreased intellect, memory impairment, confusion, personality changes, and alteration of the normal function of the area irradiated.  There is also a possibility that the radiation itself will cause another tumour as a result of all of the damaged cells. 

I pray that none of these more permanent, debilitating side effects will occur.  We know that Kolbjorn will probably develop cataracts in a few years, have hormone difficulties and will  probably be shorter thsn he should be.  As much as I don't want Kol to experience any of these side effects, these are manageable, and can be compensated for, so I'm (we're) not as concerned about them.  I just don't want to lose my boy now that he's back again.

On the plus side, aloe gel is working well for the itchiness and the redness on Kol's head, and his blood counts had risen on Friday.  The radiation therapists said that if the counts continue to rise, the last 3 craniospinal (head and spine) radiation treatments will be done next week.  From a "radio-biological" point of view, the treatments are more effective if they are done as close together as possible.

Every time we saw Kol's neurosurgeon, he reminded us to take one day at a time.  I need someone to tell me that now.

One day at a time sweet Jesus
That’s all I’m asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday’s gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

Friday, July 23, 2010

How low can you go?

Do you ever get the feeling that things that have occurred recently actually happened ages ago?  Kirk and I were just talking about how it felt like it's been a long time since the big girls left for Regina - and it had only been just a few hours.  That's the way it feels with the latest development, too. 

Kol had a blood test on Wednesday before his chemo treatment.  It showed that Kol's white blood count (WBC) is now low.  It's not unexpected; we had been told this would probably happen.  The chemo attacks all fast-growing cells - hair, blood, fingernails, and cancer cells.  Radiation is damaging to the bone marrow, which produces blood cells.  As a result, there is less blood, and the body is not able to replace the blood as quickly as it normally would do.  A low blood count means that Kol is more susceptible to infections; his body is not able to fight off bacteria or viruses he may come in contact with.  If he does get sick, a mild cold virus could become serious very quickly.   Now we need to start being careful about taking him out in public.  He needs to avoid malls, Walmart, and places where there will be large groups of people in small areas. 

As a result of the low WBC, there have been some changes to the treatment plan.  Kol now needs to go in for daily blood tests.  We need to go to the Cancer Center at least 2 hours before his radiation treatment each day in order to have blood drawn.  It seems he got his PICC line inserted just in time.  Another bonus is that we won't be needing to flush the PICC line ourselves as much; it will be flushed after the blood sample is taken.  The chemo went ahead as planned, but instead of radiation treatments to both Kol's head and spine, as they had been doing, they are only treating his head now.  He had 3 more head and spine treatments scheduled, and then they would have started with the 'boost' to the brain on next Monday (July 26).  They started with the boost portion of the plan on Wednesday.  The hope is that the bones in Kol's spine will be able to recover and start doing their job.  If Kol's counts are high enough, they may do the final 3 treatments after the 16 boost treatments are done. 

Even with the low blood counts, Kol seems healthy, and he is doing well.  His appetite has been better this week, the anti-nausea he's been taking has been doing a great job, and Kol's energy level is back up.  It feels like we have our son back.  I think I mentioned once before how Kol had changed in the months before his surgery.  He had been withdrawing, and was more reserved than he had been.  The change was gradual, but looking back, it's easy to see the changes in him.  He had lost his 'sparkle'.  It's been wonderful to see him blossom over the last few weeks - and I've really noticed the changes now that the 3 girls have been away.  He is more active, he's been telling jokes and being goofy again.  He seems so much more mature since his surgery, and he is capable of having a serious conversation, and making cool connections like he used to do.  It is such a gift. 

Kol was devastated yesterday when the nurse told us about the blood count, and that it was now time to start avoiding public places.  He was so excited about going to the library.  She then said that the library probably would be okay if he took some precautions - the count wasn't dangerously low yet, and the library isn't usually crowded like the mall could be.  I wish I had a picture of Kol's face then.  It was truly priceless.  We went to the Frances Morrison library and spent almost 90 minutes there.  Kol borrowed 23 books, and has already read 5 of them.  My boy is back.  I am so thankful for that.

Tuesday, July 20, 2010

In other news, sleep deprivation makes you dumb.

Monday was a busy day. Busier than it needed to be.

I was up late Sunday night - I don't remember exactly what I was working on, but at the time it seemed important enough to justify staying up late to finish. I think I got to bed around 2AM, and we were up at 7:30AM so we could get to Saskatoon in time for Kol's appointments on Monday. At some point during the day, we couldn't find a form required for Birgitte's MRI on Tuesday, and so it was decided that I should drive back to Outlook to find it. On my way out of the city, I stopped to pick up a cell phone charger, as my phone's battery was dead and my charger was mysteriously missing as well.

After multiple construction delays on the 219, I arrived home in Outlook, and started looking for the missing form. After searching for 10 minutes or so, I started worrying, and called Kristen for suggestions on where to look. After searching for nearly an hour, in desperation, I decided to check the van one more time... and there it was, sitting right on the console between the front seats.

After sheepishly calling Kristen to let her know that (1) the missing form had been found and (2) her husband was something of a dope, I went up to my bedroom to grab a couple other small things that had been left behind. I discovered that I had completely forgotten to pack my CPAP (sleep apnea mask), so I packed it up. Inside one of the compartments of my CPAP case, I discovered... my missing cell phone charger that I had just purchased a replacement for.

I drove back to Saskatoon in utter shame that night.

Anyhow, enough about me.

Kol's radiation treatments continue to go well - he's now a third of the way through them. He got his PICC line inserted on Monday without any real trouble, except that because of his size, they had to use a smaller line that needs to be flushed daily instead of weekly (we now have a box full of saline and heparin syringes for that purpose). Chemotherapy treatment #3 is on Wednesday, along with radiation treatment #11.

Birgitte's MRI on Tuesday morning went well - she didn't appear to be scared, didn't have any adverse reaction to the general anesthetic, and is pretty much back to her old self. We have a meeting scheduled with her neurologist in early August. She's at the next dose level of her medication (it ramps up to the full dose over a 5-6 week period) with no sign of side effects yet, so that's promising.

The girls (Julianna, Mari, and Birgitte) are heading down to Regina with Mom and Dad tomorrow. Kol is looking forward to checking out the Saskatoon library while they're away.

And I am going to get some sleep now.

Monday, July 19, 2010

Missing camp

I just realized tonight that this is the start of Family Week at Kinasao. We've been there the past two years, and we were looking forward to being there again this year, before Kol got sick. It seems a bit trivial, but I feel kind of sad that we won't be there this week.

For anyone at Family Week that happens to be reading this: hope you're having a great time, we wish we could be there with you, and hopefully we'll catch you next year!

Saturday, July 17, 2010

Rough week

Sorry for not posting much this week. We're back home in Outlook for the weekend, and quite frankly I'm feeling exhausted, both physically and emotionally.

Wednesday was rough, as Kristen mentioned in her post. Thursday and Friday were better, but the drive home to Outlook on Friday was a little rough - we were all feeling tired and hungry, which made for some cranky moments, especially between Kolbjorn and Birgitte. At one point I pulled the van over to the side of the road and threatened to make them both get out and walk for a while - that's not a normal event in our family trips. We only stayed a couple nights in Saskatoon this week, due to some other appointments in Outlook, so I think we were all getting tired of driving back and forth.

This next week is going to be busy:

  • Monday will be radiation for Kol, followed by the PICC line insertion.
  • Tuesday will be Birgitte's MRI scan for her epilepsy - that'll take most of the morning, and then Kol has his radiation in the afternoon, and I believe we'll also be meeting with the radiation oncologist again (Tuesday afternoons are when he has regular appointments with his patients).
  • Wednesday will be radiation and chemotherapy for Kol, while the girls (Julianna, Mari, and Birgitte) are probably going to head down to Regina to spend some time with Ulla and her crew.
  • Thursday and Friday are radiation treatments, no other appointments or treatments scheduled (at least so far). Hopefully we'll be able to find some time to go out with Kolbjorn and have some fun.
I'm hoping that we'll get a good chance to recover this weekend - get some sleep, relax a bit, spend some time with family and friends, and just try to decompress before next week hits us. Speaking of sleep, I'm overdue for some, so I'll just end this here.

Friday, July 16, 2010

Veins of thought.

I'm having a hard time writing this post.  When we called this blog a roller-coaster ride, we had no idea what a roller-coaster it would be.  I've never liked roller coasters.  I really wish we could get off of this one now.

Tuesday and Wednesday were hard days for me.  I've really been second-guessing our decisions, wondering how effective any of these treatments really are on brain tumors.  Many other types of cancer are relatively easy to overcome - and there are even lots of what appear to be effective alternative treatments for them.  Brain cancer is different.  Many of the treatments are not effective against brain cancer because of several things, especially the blood - brain barrier, the dangers of swelling in the brain, and the sensitivity of the other parts of the brain.  I can understand the reasoning behind radiation, and because the cancer cells can be targeted, it is a viable and probably necessary option.  However, I wonder about the effectiveness of chemo on brain tumors, because the blood-brain barrier tends to block access of many, if not most (all?) drugs to the brain.  As a result, Kol could be getting lots of drugs that will damage the organs in his body, but won't cross over into the brain where they are truly needed.

I wonder if doctors need  to recommend these things just so they appear to be doing something, or if they really believe it to be effective.  I wonder if they would go through all of these things themselves, or if they would be willing to put their children through it.  I've been trying to find information about the different chemo drugs, trying to learn if they do cross into the brain.  I haven't found any studies yet that show that any of them are effective on brain cancers.  I have, however,  recently come across the summaries and abstracts of many studies that show the ineffectiveness of many chemotherapy drugs against brain cancer, including the vincristine that Kol has been getting.  They also list many more side-effects than we were told about.  I know that some of you are tempted to tell me that I shouldn't be looking at studies - especially online - but I can't deny who I am.  I need to know the answers.  I need to believe I have correct and complete  information when I make a decision, even if it is one of those non-decisions, where we have the illusion of choice, but, really, the choice is made for us.  My son's life, and quality of life if he survives this is at stake.  I will not just follow blindly.

Wednesday was a tough day for all of us, too, especially Kol.  He has been getting sick from the radiation treatments.  We thought we had things figured out on Tuesday.  A regular dose of children's Gravol made Kol sleep for 3 - 4 hours, so we decided to give half of the dose before the treatment, and the rest about 2 - 3 hours later.  He got a 3rd half dose 6 hours after the first dose, when the first wore off.  The split dose of Gravol we gave him worked well, and he didn't fall asleep.  We were happy not to have to use heavier anti-nauseants yet, and when we met with the radiation oncologist, he said to keep using the Gravol, since it was working.  Then, on Wednesday, we did the same thing, but it stopped working.  One hour after the radiation treatment, while we were waiting for the chemo and before the 2nd dose of Gravol was due, Kol got sick.  We grabbed the garbage can just in time.  He was sick again several more times, and he couldn't keep the Gravol down.  We got a prescription for a heavier anti-nauseant then, which worked better Wednesday afternoon, and Thursday.

On Wednesday, it took 3 tries to get an IV started for the chemo, and they finally had to call a nurse down from PICU.  Kol is apparently running out of veins which aren't damaged, and which can be used for the chemo.  With all of the blood draws they have been doing, and the failed attempts - it also took 3 tries on Monday to get a good blood sample - the veins aren't healing fast enough to be usable for chemo.  If there is a hole in the vein, the chemo can leak out of the vein, and burn the skin and tissues from inside.  Apparently, a vein can often only be used once for chemo because of how hard the drug is on the vein.  Now the Dr. wants to have a PICC line inserted, and he's scheduled Kol for that on Monday.  That meant more blood draws Thursday, and another surgical procedure.

Kol is starting to lose his appetite, too, which makes every calorie he gets more important.  I'm trying to make sure that he eats as nutritious food as possible.  It's tough when the only things he likes are perogies, bread and peanut butter.

We're still at the beginning of this journey, and I'm worn out.  I'd love to just go to bed and find out it's all a dream.  I'd love to just bury my head in the sand, and pretend this isn't happening.  I'm tired of waiting on pins and needles, watching Kol closely for signs that the tumor is coming back, or for new side-effects.

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.

Monday, July 12, 2010

Busy week ahead

This is the first full week of treatments for Kol - radiation treatments each weekday, with bloodwork today (Monday) and chemo on Wednesday, and appointments with a physio therapist, an occupational therapist, and a Developmental pediatrician at the Kinsmen Children's Centre on Tuesday. We also have to try to work around a pre-MRI physical exam for Birgitte on Thursday, and Julianna is going to a friend's birthday party in the middle of the week. We're trying to stay at home in Outlook as much as possible this week, but there will probably be a night or two spent at my parents' place in Saskatoon.

Kol's been experiencing some nausea after the radiation treatments - when it first happened last Wednesday, we assumed it was the chemo, but now it seems like it's the radiation instead. The radiation nurses told us that it's probably a side effect of the spinal radiation, as some lower-energy radiation is likely hitting parts of the stomach after passing through the spine, causing irritation. So far Gravol has been working for relief, but we're still trying to find a dose that makes him feel better without knocking him out cold for a few hours - hopefully today we'll find out if we've got it right.

Thursday, July 8, 2010

Six weeks

Six weeks ago, I was taking Kolbjorn to the RUH ER. Six weeks ago, I had no idea how our world would be turned upside down. Six weeks ago, things were still "normal".

Six weeks from now, Kol will be done radiation treatments. Six weeks from now, we'll be working on recovering and rebuilding. Six weeks from now, we'll have another six weeks before chemo starts.

Six weeks feels like an instant. Six weeks feels like an eternity.

Two down, twenty-eight to go.

We just got back from Kol's second radiation treatment.  He and the 5 girls (Kol's sisters and 2 cousins) are now doing a scavenger hunt that Julianna arranged.  They are all running around, making lots of noise, and giggling.  I have a silly grin on my face from listening to them.

We will be going to the cancer center every weekday for the next 28 treatments.  He will have weekends off - I think August 17th is his last day.  Every Wednesday during that time, Kol will be getting another dose of the chemo.  After the last radiation treatment, Kol will have at least 6 weeks with no further treatments, in order to allow the bone marrow to be replenished, and to get his blood counts up. 

Tomorrow, we will be taking the whole family to the Cancer Center so that the girls can see what is happening to Kol - so that it isn't such a mystery.  It should also help them to understand what Kol is going through.

First treatments

Kol had his first radiation treatment today, and it turned out that he had his first chemo today, too.  We knew there would be chemo at the same time as the radiation but we didn't know exactly when the chemo would start until the last minute. 

The radiation went well.  They had painted Kol's helmet with a picture of Super Mario, which made him happy.  The radiation technicians were great. They had made a chart with pictures of Star Wars characters and squares for each treatment.  He'll get to put up a sticker each day he comes for treatments.  He had the helmet on for so long that it left a waffle pattern on his face.  It kind of looked like bubble wrap, or spiderman.

 After the radiation we went upstairs, and Kol got his first dose of vincristine.  It is supposed to have fewer side effects than many of the other chemo drugs.  It was given through an IV over 15 minutes, and he also got saline for a few minutes before and a few minutes after.  He really doesn't like the needles, even with the numbing cream.  It went well, though, and while we were talking with the nurse after Kol was done, Kol got to play on the very cool Wii.  It is pre-loaded with tons of games. 

When we got home to grandma & grandpa's house, Ulla was there with the other kids.  She had told them that Kol might not feel well, and that it might be a good idea to keep things quiet and calm for him.  Kol surprised them all by charging into the house and pretending to attack them with his light saber. 

Kol did start to feel nauseous about 30 minutes after we got back, and was sick about every half hour after that.  Gravol helped finally around 9:00, and he is sleeping well now.

Kirk and I are starting to feel really tired - maybe we are starting to crash after all that has been going on.  I'd love to be able to hide, to bury my head in the sand, to sleep for a week.  Seeing Kol sick from the milder drug gave us our first glimpse into what we may be facing.  It won't be easy.

Tuesday, July 6, 2010

False Alarm

Kol chose the title for this post.

I guess I should know better than to start worrying about things before they actually happen.  However, in this case, expecting the worst paid off.  We just got back from our meeting with the radiation oncologist - which was re-scheduled to 2:00.  He wanted to talk about long-term side effects of the first phase of radiation - it'll be 17 days of treatment to the entire scull and spine.  Then there will be 13 more days of focussed treatments to the head area - which hasn't been completely planned yet.  We'll learn more about that later.  However, at this point, the doctor said he doesn't anticipate that there will be any damage to the optical nerve - however, since the treatment hasn't been planned yet, he can't say for certain.

There are three main areas of side-effects that Kolbjorn will be facing as a result of the radiation. 
  • They need to go through part of the eye globe (the doctor's phrasing) for the first phase of treatment, which will cause cataracts in a few years, but he can have surgery for that when the time comes.  
  • All of the bones in his spine will be affected, which will cause him  to not be as tall as he should be.  The bones will not grow to be as large as they should.  However, because they are all being treated, they will grow uniformly - he won't have some larger, or some smaller vertebrae.  The ribs won't be affected, so his torso will be just as wide as it is genetically intended to be. 
  • There will be damage to the pituitary, and the thyroid, and the entire endocrine system.  However, because they are aware of this, Kol will be closely monitored so that when they are needed, he will receive replacement hormones. 

Last minute meetings and more

The cancer clinic people are very friendly and helpful - but they don't seem to be great at scheduling appointments in advance.  Maybe it's just because Kol's treatment is being fast tracked.

At 3:00 this afternoon, we got a call from the Cancer Center, asking if we can come see the Radiation Oncologist tomorrow at 12:45.  The receptionist said he could talk to us on the phone, but he would rather talk to us in person to go over the plans for Kol's treatment.  He said it would be easier to show pictures.  He did say at our last meeting that if he had to focus the beams so that something sensitive (like the pituitary gland, or optical nerve) would be damaged, he would talk to us first.  So now we could be facing another 'non-decision' decision; a decision that really is no decision at all.  A decision like signing consent forms for surgery, or for allowing the use of contrast media with the MRI.  The doctors make it appear that we have a choice, that we have some control - but in reality, we don't.   It's an illusion.  If we didn't sign the consent for surgery, Kol would have died.  If we didn't sign the consent for the contrast media, the neurosurgeon would have only had part of the info he needed, making the surgery more difficult and more dangerous - if he even went ahead with it. 

This decision, if there is even a choice, could be the hardest of all.  I know I may be getting ahead of myself, worrying about something that may not happen.  However, if it's what I think it is, it's not a choice I want to make lightly, or quickly.  And we will only have a few hours to decide.  When we last saw the radiation oncologist, he talked about how close the optical nerve is to the tumour, and that radiation damage to it would cause blindness.  Then, it was a hypothetical discussion.  It doesn't feel hypothetical now.  We may need to decide whether or not to allow Kol to become blind, or to keep him alive.

Kol is a visual learner.  He is very observant; if there is a dog anywhere in sight, he'll find it.  Kol loves to read.  Since he was 18 months old, his security item has always been a book.  He carried one or two books everywhere.  The books changed every few weeks, but he always had a book with him.  He cried much longer when he had to leave the books in the van when we went swimming than he did when he stepped on a nail.  He taught himself to read at 4.5 and 2 months later was reading chapter books.  He still almost always has a book with him - it's not uncommon to see him clearing the table, or running after his sisters with a book 'tented' over his arm.  Kol also loves playing video games and building lego creations.

We have so many questions running through our minds.  What would Kol do if these things were taken from him?  What kind of life would he have?  Do we tell Kol and let him have some input, or is that too much pressure to put on a 7 year old - and can he really even understand the implications?

Maybe I'm jumping the gun; maybe the doctor just wants to describe the final treatment plan to us.  What ever the case may be, we only have 12 more hours until we find out.  Maybe that's why the Cancer Clinic schedules so many last minute meetings.  So we don't have time to worry.

A change of subject

Kol has been the subject of most of this post - now it's time to focus on Birgitte.  She has had 2 more seizures in the last week.  One was on Thursday night at the lake after she went to bed.  The second was just this evening, just before bed, while I was working on this blog post.  Obviously, we haven't put her on the medication yet, although ironically, we just filled the prescription earlier today.  We were really hoping that we could keep her well rested - but that hasn't worked well.  Birgitte's seizures haven't really been a big deal to me.  Kol's problems seem so much more serious, and really, seizures aren't life threatening - they're just a bit scary to see.  As a result, I haven't been as consistent as I should be at getting her to sleep.  We will not have a consistent routine in the next few weeks, and it will be hard to get her to bed regularly.  The medication will make it easier for us in so many ways.  Birgitte has always fought sleep - this way we won't have to fight with her.  We will be freer to focus on Kol's needs without having to worry if Birgitte will have a seizure while swimming, or climbing, and injure herself.  But that feels wrong to me.  Kol's illness may be more serious, but he isn't more important than she is.  I don't know if it's fair to just medicate her to make things easier on us, or so that we can focus on her brother.  I know the medication isn't poison, but it's not harmless, either.  She needs attention, too.  It will take more consistency on our part to ensure Birgitte gets more sleep - but it will also give us the opportunity to get more one-on-one time with her.  That can't be bad.

Saturday, July 3, 2010

Quick update from the lake

Sorry for the lengthy silence - we've been relaxing and enjoying time at Christopher Lake (aside from the overabundance of mosquitoes here), and haven't been able to get an Internet connection until just now. Kol's spinal tap on Wednesday went relatively smoothly, we'll probably hear the results next Wednesday. We'll be heading back home Sunday, spend a day or two at home, then head off to Saskatoon for Kol's first radiation treatment. Other than that, this is a "no news is good news" update. Hope you are all have a good weekend!