You can donate your PC's idle time to do calculations for a Neuroblastoma research project!  I signed up, of course.

Here's the information page on "Help Fight Childhood Cancer:"  http://www.worldcommunitygrid.org/research/hfcc/overview.do

Here is the page where you can sign up:
http://www.worldcommunitygrid.org/index.jsp
Once you download the program you can pick "Help Fight Childhood Cancer" as the project you wish to support.  (Note: check that you have the right one because there are two cancer ones and I want the Neuroblastoma one to get the time!   Too many children die of this disease.)

Hi all: especially those in Oaklands, I'm hoping someone will have a good tip on a great place to live.

Our lease will be up April 30th and we'd like to take this opportunity to get back into the Oaklands neighbourhood.  This time last year Rene was doing inpatient treatments in Vancouver and even though our former landlords gave us plenty of notice and were as helpful as possible when they sold the house we were renting a suite in, we were still forced to find a place while physically being in Vancouver on the cusps of the month!  We found a clean place with a real kitchen, but it's just north of the Hillside mall and we'd really like to come home to Oaklands again.

It's tough for us to find an adequate place while still paying as close to $1,000 as we can get, but sometimes amazing things happen.

Here are the characteristics we'd like in a place:

1. two bedroom
   
2. a "real" kitchen with reasonable counter space, a fan over the stove that vents to outside, a double sided sink, and a dishwasher.
3. very clean: no mold, mildew, dust, or insulation
4. no smoking -- of any kind
5. easy access to laundry every day
   
6. within the Oaklands catchment
7. a storage shed or storage room with relatively easy access

I'm terrified to tell our landlords we don't want to renew the lease because once we do, that will be it: we will be committed.  Last year moving was extremely stressful for me -- and Luis did most of the work!  The mere thought of packing everything up, hauling it to a new place, cleaning, unpacking and reorganizing, let alone looking at the endless string of "dumps" for rent in our price range, hoping to find a gem, makes me want to crawl under the bed and never come out. 

This too, shall pass. 

Luis and Rene reported for chemo Monday morning at Victoria General Hospital. They soon found out that both of the nurses who staff the small children's oncology clinic were out (one on leave and the other ill).  No other chemo certified nurses were available.  The doctor said they could do Monday's chemo, but then Luis and Rene would have to get to Vancouver by Tuesday morning and stay for the rest of the week to finish there OR they could postpone the chemo for a week. 

Because Rene has a cough they would not have been able to stay at Ronald McDonald House (that's even if there had been room) so it would have meant a week at Easter Seals.*  In the end Luis felt comfortable postponing the chemo for a week because the protocol is that the chemo should be given every 21 to 28 days and next Monday is day 30, effectively stretching the protocol by only 2 days. 

We hope that both nurses will be back next week because otherwise, Luis and Rene will have no choice but to go to Vancouver!

Luis did a quick readjustment (you've got to be comfortable with extreme change when your dealing with cancer treatment).  This week is the first one he's been able to work in a long time!  He's trying to keep his days really short so that Rene's days aren't too long and he gets enough rest.  It's a tough balance to strike. 

*Easter Seals is wonderful, so we should all be supporting it, but since it is set up like a hotel, rather than a house with a shared living space and kitchen, it can be lonely. 

Thanks to the chemo Rene is shedding.  I'm trying to refrain from repeatedly pinching a few hairs on his head and tugging to see how many come loose (usually one to three).  I double checked on my own head: none.

He had a bunch on his pillow case that we hadn't noticed in the morning.  He was holding his pillow over the side of his bed and brushing and shaking to get them off, then he flipped it over and got comfy. 

He's made a point of standing up on the toilette so he can see in the vanity mirror, head soaked and brush in hand, he combs his hair slicked to the side like an old man.  Then he asks me to help him with the unruly curly at the back.  The effect when it dries is less curl, but no order.  He sure is cute when he does it, though.

I wonder if the rate of hair loss will suddenly increase like it did the first time.  That time we actually scrubbed the hairs off his head gently with a wash rag.  Strange, but true.  I've been there, done that.

The preliminary results of Rene's MIBG scans show no disease. This is great news.  Rene is going to do two more rounds of chemotherapy and then the doctor will reassess if he can stop or not.  So far, so good.

So we've been through scans before, but each time they are a new experience because the emotional baggage changes. 

This time is the first time after relapse.  Now we aren't afraid of relapse any more. Now we are afraid to learn that treatment isn't working, though it seems too soon to know either way. 

I wanted to go over with Luis and Rene for this round of scans, but it has turned out that I have a cold that has kept me home.  The plan was for me to leave work a bit early and take public transit over to join Luis and Rene (who are at Easter Seals this time because Rene has a cold and can't stay at Ronald McDonald House). I felt completely drained and was dreading the long trip, but I forced myself to take my backpack with change of clothes and toiletries with me to work.  Once I got to work, though, my co-workers told me I was pale and basically confirmed that I looked as bad as I felt. 

I'm a tough mama and I've done a lot of stuff with a cold before, but this cold was too bad even for me. I mean, I have an olive complexion. If I'm sick enough to be pale, I'm pretty sick. I felt so terrible calling Rene to tell him I couldn't make it.  He'd cried because I wasn't going over with them on Tuesday and there I was breaking my promise to him to meet up with them on Wednesday night.

As I write this, Luis and Rene are chilling waiting to see the Doctor and get the preliminary results from the scans, which were completed this morning. 

Please, God, let us hear good news.

It's been hard to know WHAT to say on my blog. Rene finished chemo without anything very exciting happening and went right back into school.  They had the bed by the window in Victoria Generals' mini pediatric oncology clinic.  Every day they'd go and sit, reading books, watching TV, and playing video games.  The nurse gave them a fork and plate and Luis would keep it clean on the window sill for the lunches he was packing.  The staff really makes the clinic a kind and gentle place to be.

For a while, between 3 and 5 p.m. he was getting completely exhausted and sleeping, then waking up at 7:00.  Luis and I flip-flopped our schedules, showering, preparing lunches, etc. for the next day first, then helping Rene with his routines and reading bedtime stories later after he woke up. The naps were necessary.  He'd look awful before sleeping, then awakened looking refreshed and fine.  Then he went through a stage where he was pale and his skin looked thin to me when he was sleeping (the effects of low hemoglobin).  He's also been sweating during the first hour of sleep. That scares me, too.

Now Rene can "make it" until 8:00 at night, but he's still very tired.  He is maintaining his usual active lifestyle, though he's really interested in watching Pink Panther. He can watch HOURS of Pink Panther on Netflix. Experience tells us that when he's really interested in TV, he's feeling tired, though he never mentions it.  Once chemo was over this summer, TV was of little interest to him.

Luis and I were a little surprised at how much we'd forgotten about the cycle of chemotherapy.  Rene had blood work every few days after chemo to see if he needed a transfusion and how long to continue his white blood cell stimulating shots. Luis had to take him over to Victoria general almost every other day.  The appointments take hours because they draw the blood and wait for results in order to do the transfusion, if necessary.  It's actually, really wonderful because Rene's care can be determined as needed--and right here in Victoria.  Luis, in fact, isn't going to work much between treatments.  Oh well, it's a wonderful opportunity for he and Rene to spend time together and for him to be in greater contact at Rene's school. 

They had a great time sledding on the snow day. After sledding for 4 hours straight Rene declared to Luis, "This was the best day of my life."

Rene's been getting some good Grandpa time, too. His Grandfather is staying with us for the week.  He brought two nerf guns and 200 foam bullets with suction cups on the tips.  It's been fun playing with those.  Rene practiced and practiced and was able to turn on the light by hitting the switch from across the room -- and those guns are hard to aim!

I'm being brave and reading a book called Love, Medicine and Miracles by Bernie Siegel.  It takes a lot of guts to read because Siegel's life's work is about helping seriously ill (adult) patients improve their lives and outcomes through personal change, empowerment and healing.  He boldly makes connections between feelings (good and bad) and illness and health.  My goal is to use the book to look for opportunities to fully support Rene. I have to keep focused on the goal and not get sucked into guilt or regret about the normal troubles faced by all parents and children -- children who don't get cancer. 

I've been playing Rene and I a healing mantra from Kundalini Yoga, that is very soothing and centering.

Additionally, I've been trying a simple meditation and it's been quite helpful in keeping me out of fear -- except sometimes at the bedtime hour.  Last week, though, it was hard to be me.  I just couldn't feel happy much of the time.  Finally, I gave up and decided to think of it as an emotional "winter."  In winter it seems like things aren't alive, but development and readiness is happening out of sight and bursts forth in spring.  I may have been fighting a flu virus because my body was aching.

What a roller-coaster ride.  The other night I suddenly was able to sleep after struggling with it for days.  It turns out a friend was sending me Reiki at my bedtime.  Ahhhh. Relief. 

I won't say it's easy. It takes work to keep going and keep enjoying life, but all in all we're OK.

Rene was quite wound up this morning before heading off to chemotherapy at Victoria General.  He started out fighting to turn on the TV before getting dressed and eating breakfast (He wanted that mental numbing effect).  When hitting me and calling me stupid and stomping off to his father didn't result in the desired effect, he banged around in his room and when THAT didn't result in anything but a repeated request by his father to settle down and get dressed he finally got to the point.

He delivered a tirade on hating doctors. Targeting doctors is a new tactic on his part. Before he would just be generally angry, but not know to where to direct the anger.  Anyways, the tirade went something like this: "I hate doctors. They don't know anything. They never give me a break.  They're stupid. They don't know anything about kids.  They never give me a break."

I was in the kitchen making breakfast and as Rene went on, I remembered my own burst of tears the night before.  I wanted to be able to go with them, not to work.  Rene has told me matter-of-factly that it hurts when he gets the poke into his new port, which is under his skin on his chest.  (The old one hung out of his chest and was an infection prevention nightmare, but never hurt him.)  Really, I just wanted all of us to be able to step out of the cancer experience forever.  'Stop the bus! We want off!'

Once Rene got himself on the topic and his father listened to him, he was feeling a bit better and sat pouting at the table. Rene never pouts, but there he was, shoulders hunched, head at half mast, lip cooling in the air. 

Luis gave him his anti-nausea medicine which Rene vented about by asking questions as if he'd never take that before. "Why? Why? Why?"  Luis just answered him. 

Rene kept up his surly attitude until Luis said, "What are you, a teenager?" Rene giggled and managed to put some scrambled eggs into his mouth. 

Once he was feeling better, he got practical: "I want to take my DS so that when they give me the poke, I'll just be playing."



PS. Don't miss the thank you entry that follows this one. (I'm posting two things today.)

We have so many people to thank for holding us up this holiday season – many who we haven’t even met.  People were so thoughtful and three different groups of people independently moved to make our holiday celebrations and busy month with Luis off of work free from financial worries.  

 Thank you to the people at Oaklands Elementary!

Thank you to the people at David Livingstone Elementary!

Thank you to my colleagues!


You all found a way to make your support useful, respectful, and heart-warming. 

It has taken me weeks to figure out how to write a thank you on this blog because it’s hard to put into words how much it means to our family to be free from the stresses of financial terror. 

I guess that’s about all that needs to be said. 

Thank you so much to everyone at Oaklands who has pitched in to help our family.  We are so touched and grateful.  We had no idea what you were up to... you are all amazing!

Rene's radiation will finish on Wednesday and we are looking forward to a fun vacation at home.  Rene has been feeling tired quite early in the evenings, but he still has his spunk so we know we'll be able to do plenty of fun things.

Rene might even be able to come to school on the 3rd.  We hope!