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!

I'm all by myself again.  It's funny. Being by myself used to be something I longed for.  Now I'm trying to enjoy myself as best I can.  For sure, it does give me some time to grieve and be sad freely without having to hide it from Rene, who is naturally happy -- except when he's mad, of course.

Thanks to my coworkers, who basically kicked me out of work, I got to spend 2 nights with Luis and Rene in Vancouver at the Ronald McDonald House. Rene made me feel very welcome, proudly introducing me to the team of people at the BC Cancer Agency who are lovingly giving him his radiation every morning at 8 a.m.  The three of us came back to Victoria for the weekend and it was so good to have the four days in a row. There was less hustle and bustle than usual and we were able to play together.  Luis is not a complainer, so it was interesting to hear little comments from him that let me know it is hard for him to be the only parent over there.  I'm very glad we were all able to be together for Rene's first treatment.  Rene and Luis are doing quite well together.  I'm proud of them.

I said goodbye to Luis and Rene at 1:50 (Thank God for BC Ferry's and their priority boarding letter, we only have to get there 30 minutes before the sailing) as they drove off to the ferry again for another week of radiation.  First, I sat in the sun to make some vitamin D, then I came in to catch up on emails.  I intended to put a nice thank you up to the parents and children at Oaklands Elementary for the lovely package they gave to us this weekend.  We parents appreciate the "big gift" which will help us while Luis can't work.  Rene really enjoyed the cards, drawings, and toys that people sent.  My favourite moment all weekend was when, responding to a card that read "Get well soon," Rene declared, "They don't know that I'm already better. I feel fine."  Luis and I beamed.  My heart was so glad to hear those words. As a parent, I always try to believe in my little son and that's the message I most long to believe in. 

The thank you is here, but meanwhile on Facebook I saw that a dear fellow "cancer mom" shared a beautiful video and song written and sung my Megan McNeil.  So here I am, having a sob-fest and decided to pass it on. 

The song and video say it all.  We've had the privilege of being at Camp Goodtimes (Canadian Cancer Society) with one of the singers and her father, who appear in Megan's video.  You just can't meet better people. 

Hugs to the parents of Megan, who passed on early this year. I hope I don't have to stand in similar shoes, but I might.  No matter what, I'm grateful to Megan for her exquisite singing ability and selfless professionalism that give us something to share with everyone.  Here's the official You Tube video:

Note: The James Fund, chosen by Megan, is a fund that is named for a child who died of Neuroblastoma in 2001. Naturally, it is a fund that is close to my heart as well.

Rene's radiation treatment still continues and he started chemo today. He'll have three days this week so that his body won't be "knocked" too hard by it.  He finally got rid of his cough so he and Luis are at the Ronald McDonald House and Rene is loving playing with the volunteers there. 

He had to get the needle poked into the VAD in his chest - ouch.

This blog post won't be well written, but I wanted to get some information out about what is going on. Here are the details in list form:

• Rene started radiation last week to treat the new tumor on his pelvis.
  
• Rene also has some diffuse disease in the rest of his pelvis and in his lower spine. 
• Luis is caring for him in Vancouver while I work in Victoria
• Rene is just as spunky and energetic as ever. There is no way to tell he has cancer without putting him into a machine and scanning him.
• Rene got a VAD (venous access device) surgically implanted in his chest today.
• Rene also did his radiation treatment today
• Radiation is every morning for 20 working days
• He lays in the machine for about 10 minutes, I guess (what do I know, I'm working?)
• Rene is now able to lay still so he does not have to be sedated daily, like he did the other time he did radiation
• Chemotherapy starts this month in Vancouver
• Chemotherapy will be given as a low dose as an outpatient in Victoria
• The doctor wants to keep Rene in school during the majority of his chemotherapy
• There is "some" hope that Rene can still be cured
• Neuroblastoma is unpredictable and there is no way of knowing if this will work
• I am terrified, but working hard to keep a positive attitude.
• Rene's grandma passed away last month. He misses, her but has the advantage of being only 5. He's not dwelling on it.

Rene has some recurring, sporadic pain in his groin and was sent in for a PET CT scan. A tiny tumour was found on his right pelvis.

This tumour was the only one seen in his body and can be destroyed with radiation. We don't know if the doctor will recommend any additional treatment or if the radiation will be enough.  It's good that there is only the one tumour, but there is no way of knowing if others might now form. 

Luis and I were so proud of Rene last week.  We went to his quarterly scans and he handled himself very well.  We call these scans "easy" because his treatment was full of more difficult stuff, but the honest truth is that they aren't a cake walk.

This time he drank the "juice" (protects some internal organ, probably the kidney, from the radioactive tracer) without complaining.  He then sat still while the technicians put an IV in his elbow and stayed still on my lap for 10 minutes while I read him a Berrenstain Bears book as they slowly injected radioactive MIBG (it binds to neuroblastoma -- if there is any) into his body.  He cried when it made his tummy upset. It can cause nausea and we hadn't had time to eat a full lunch before we went to the appointment so I think it was more uncomfortable.  He managed to handle it and talk to the people to help distract himself from the discomfort. 

The next day he held perfectly still on the little mobile bed in the machine.  They didn't sedate him and I'm so glad because the sedation process is very taxing.  He even held still when his nose itched. He just wiggled it and asked me to scratch it for him!!!!  He can handle it just fine when the lens of the machine comes to within a centimeter of his nose.  The scans took 2 hours and they even had to redo one bit because there was a spot of urine on his clothes -- he's a boy -- and that would "glow" in the images. 

He got to watch his top choice of the movies they have in the Nuclear Medicine area: The Letter Factory.  He's patient and "listens" to the movie while his head is being scanned.  When that was over he chose Pokemon and fell in love with Pikachu.  He has this plastic Pikachu from McDonalds (There's no excuse, I know.  We all work so hard to save his little life and then we parents take him to McDonalds) and ever since he's been telling Luis and I that he'd love it if he'd fall asleep and wake up and his Pikachu would be real.  When we tell him that might not  happen (we're such wet blankets) he says Luis and he can make a robot Pikachu. 

On the third day he  did the quick comparison scan and only got to the "B" on "Letter Factory" because the scan was so quick.  The day before we went to Vancouver, I had him in stitches when we did our usual conversation about what was going to happen when we went back to the hospital.  The second day scan is so that they can compare to the one from the day before and rule out any stool that they see in there. I guess it "glows" too.  I told Rene that he'd have to go poop so that they wouldn't have to look at his poop on the screen.  He giggled and giggled and asked me to tell him more.  I figured out how to say "poop" in a funny voice as many times as I could while talking about the scans.

The whole time at the hospital and Ronald McDonald House he enjoyed hugging people and re-connecting after not seeing them for a while.  One volunteer who had spent hours playing with him in evenings at the Ronald McDonald House came by just to see us. We were so honoured. I couldn't believe it but a year had gone by since we'd seen her.  We've had colds on some of our most recent trips to Vancouver and haven't been able to stay at RMH.  It was good to see and hug everyone.

Rene enjoyed seeing his doctor, "favourite nurse," and others.  He gave his doctor a painting of a turkey he'd done at school.

We tell ourselves and everyone tells us that Rene won't relapse and not to even think about it, but the fear creeps in anyways. I was bouncing around after we got the results. What a relief.  The cancer will do what it does, but every time we go, we have it in the back of our heads that we could get devastating news.  It's a real relief NOT to get that news.