I went to Rene's school yesterday - thinking the open house was for parents of current kindergarteners, rather than the incoming group for next year -- oops!  When I got there, the children were lining up after recess and I hung back so I could just see Rene in his sacred world called kindergarten.  Sue, the assistant saw me and gave me an unexpected, and much appreciated hug.  That hug gave me courage as I ploughed through the visit. 

Of course Mr. Crisp and the class made me very welcome and I was able to read a Berenstein Bears book to the class.  I enjoyed this part, trying to read slowly and clearly. The children were all listening with their bright eyes looking up to see the pictures. 

My favourite part of the visit was sitting in a seat at the side of the classroom after I read watching Rene be in his class listening to Mr. Crisp, giving answers, and singing a class song.  That's when the desire to cry first came up and I probably should have just left, but Mr. Crisp gave me a job.  I barely survived the following task of helping Rene and two others work on their math in the library.  I have always had trouble visiting Rene's class. I get all tongue-tied and overwhlmed, but this time  I felt like balling.  Maybe the feeling was more profound because I had just been reading about the upcoming "Touch a Truck" fundraising event (see below) and in one article neuroblastoma was simply and accurately described as a "deadly" form of childhood cancer. 

I held the tears back until I got to the "too fast slide" park (that's our family's code-word since Rene was two and we first moved to the neighbourhood) and could sit on a quiet bench facing away from the street.  I don't know exactly what I was crying about. I was just crying.

Last year our family had to miss the new kindergartener open house/orientation because we were in Vancouver doing something - probably scans and hoping for a normal year of kindergarten. 

In the intervening year Rene has only attended about half of the class time, though I haven't really kept exact data on his attendance. He's doing well and we're really proud of him. We are so glad he's in such a great school and great class environment.  But that doesn't mean that I wouldn't have like to have it be different -- with more time in the classroom and more flexibility as a parent to focus on that rather than balancing medical and work responsibilities. 

After I was done sobbing I checked my watch, wiped my face with my fingers and walked to the bus stop to ride the bus in red-eyed anonymity. 

On the bench I had been thinking about how our family works so hard to keep Rene in school and how my heart breaks just a little bit every day he has to be home or every vacation day when he would have been able to attend, but school wasn't in session. Attending school is a wonderful privilege and one that our family does not take for granted.

"Touch a Truck" Event June 3rd, 12 - 4pm @ Panorama Recreation Centre. Let your kids get behind the wheel & explore trucks of all kinds including a fire truck, police car, ambulance, excavator, Zamboni and more! Join a fun-filled afternoon of family activities, BBQ and treats! Proceeds benefit neuroblastoma research. $15/family in advance, $20 at the door. For tickets, contact Melissa 250.655.5009 or melissa.drolet@gmail.com

A friend that we met during our time at the Ronald McDonald House has started selling a health product called Univera.  We were especially interested in the aloe vera product because Luis has an uncle who used fresh lime juice and real aloe (in Mexico) to help himself get better while he was undergoing chemotherapy for another kind of cancer.

We like the product which we add to our fruit/veggie smoothies Luis has been making for us. Our friend and her fellow Univera sales people all got together and shipped us a huge box of product free of charge! We are so glad to have this extra health product to give to Rene and are really touched by their support. 

So the Oddfellows surprised us with another timely gift -- very helpful with moving costs.  Someone in their group had tickets to an event they couldn't attend so another group member sold the tickets so that they could make a gift of the money to our family.  We are so grateful for this extra boost and really want to thank them for the big generosity and the time it took to sell the tickets, etc.  We are so blessed to have community support!

I'm sure no one reading this will be shocked to learn that it was a long day yesterday.  For some unknown reason Rene had to get to Vic General at 6:00 am for blood work -- 8 hours before his scheduled 2:00 pm surgery time. Rene was allowed to have clear fluids for breakfast. 
I joined Rene and Luis after lunch, working a half day.  At 4:00 pm we were moved out of the oncology clinic where there is a big TV and a lounge chair for a parent to Rene's normal surgery ward room.  At 5:00 he started saying he was starving. 

A little after 6:00 Rene was rolled downstairs by a really nice orderly.  At 7:00 pm he went into the operating room. 

Rene was nervous and got a bit psyched out. He cried and it was so hard for me to help him stay safe feeling.  One of the staff had ohm tattooed onto his hand and that made me feel better.  I just told Rene how everyone was going to take very good care of him.  Once his eyes rolled up to look up under his eye lids he was out.  Then the protocol is that a staff member grabs you firmly by the shoulders and steers you out of the room.  She was really kindly and talked to me all the way out.  She even asked if I had someone to be with.  No one has ever before acknowledged how horrific it is to help your child go under sedation.

I'm pretty good at it now and it no longer makes me want to cry. Back when it did, Luis had never been in there so he had no idea how hard it was and was no help at all. 

Luis and I went into overdrive getting some food -- luckily Timmy's was still open -- and back up to Rene's room in case the surgery was short (sometimes lines can be easy, sometimes hard).  After a bit the nurse came in to ask if we knew how much saline and heparine should be used to flush and lock his line.  We don't know that now that he has a VAD because we don't do it ourselves.  We called the Children's hospital and got the answer for the surgeon.

The surgeon came up and told us all went well.  She was OK with Rene going home once they had done the post operational observations.

Staff was really good and let Rene wake up slowly so he didn't get all angry.

At Vic General they'll tend to want to let the child to stay the night after a late surgery like that but we've taken Rene home on the ferry right after he had his lines out this summer (and I remember wondering if we were too rough on him). Luis told them straight up that our preference was to go home.

Rene dutifully chugged (not sipped. Anesthetic makes him angry, not pukey) his orange juice, and went pee so they knew all his systems were working.  We got home at 11:00 pm.

Guess what? Rene's dear friend's party was today - Saturday. Rene has had to miss every one of his parties since he turned four due to cancer treatment. this year we thought it was a done deal that Rene would finally be able to attend.  The surgery threatened to keep Rene away once again.

Well, so I took Rene to the Esquimalt Rec center for the party today. The doctor said he could go, but to stay off the bouncy castle. Rene made two dashes for the castle and I had to drag him out of it by his stocking feet. Wouldn't it have been funny if he'd broken open his wound wrestling with me?  Except for our friends, the other parents had no idea why Rene might not be able to go in the bouncy castle so we got some looks. 

He was cranky and mad at the other kids half the time because he was so over-tired (Ug. What a pain.  I've taken him on a play date with a friend from school once when his hemoglobin was too low and frankly it was embarrassing.  Needless to day I'm not shocked Rene hasn't gotten another play date invite from that family.) But we went to the party and Rene did have a great time. He played hockey for an hour. I was worried I was hurting him. He was flushed and had circles under his eyes.  At least he got to go.

Funny, he's all mad at me for keeping him off the bouncy castle and for asking him to stop shouting at the other kids and giving them dirty looks. Ha! Some day he might figure out he has me to be grateful to that he was there at all.

I was glad that our friend had planned for the boys to play soccer outside after the cake and pizza.  He got Rene going, with a friend to help him until the party wrapped up.  I had had to pull Rene out when he started wrestling with his friend and another boy.  Our friend smoothly transitioned Rene into the soccer. 

The party was important to Rene because he loves his friend a lot.  Even though it was a twonie party Rene found a nice notebook to give to his friend as well. He wanted to give him a special gift.

Rene had an echo cardiogram on Wednesday to be sure the chemo is not hurting his heart.  They found that his line (a tube that delivers chemo from his chest to his blood supply) had moved down and is 3 cm too close to the valves in his heart, which can be damaged.  So TOMORROW he has to report at 6:00 am for an afternoon surgery at Victoria General Hospital. 

His dear friend's birthday party will be the next day. This year we thought he wouldn't have to miss it again. He's missed every one since he got cancer! I'll do my best to get him there, even if he can only go at the end for the cake part. 

Rene hasn't put two and two together about the birthday party but he did come to me for a hug saying only, "surgery."  He rarely wants to get a hug from me and holds still for it.

I'm charging up his DS and am going to make a package of entertainment to help him survive the day of fasting and sitting around waiting.  Packing food would be a good idea too so we can save money and eat healthy tomorrow.

Luis is working late into the night to finish a job he thought he'd be able to finish up tomorrow.  Phew.

So, do I go to work and leave it to Luis and Rene....?

I haven't seen it yet (I was loading the dishwasher, ect) but I hear Rene can ride his bike by himself for short distances. He has no training wheels on it any more, of course.  I think he grew the last few centimeters he needed this spring.  I'm excited to see him peddling on his own!

He was very pleased and told me right away when he and Luis came back inside the house. 

We were all set for Rene to do chemo this week, but his counts weren't quite high enough so he's in school this week. Probably next Monday his chemo will start.

Luis and Rene went out to enjoy the park that's just a block away from our house for the first time.  They were so excited to see some friends of Rene playing baseball and got the chance to sign Rene up on a team.  Rene came in the door wearing his uniform shirt and cap and was very excited. Tomorrow morning is the first day. We're looking forward to it.

I hope that this is something we can stick to.  I get so discouraged with classes for Rene because something always comes up and we have to miss one, two, then three of them between scans, low counts, and Rene being too tired occasionally.  This one being on a Sunday, right by the house, and with friends he already knows from school should help. 

While we were staying at the Ronald McDonald House we met Nicky Paul and his family. Nicky went through treatment for leukemia and it was a very hard road for him and his family as the standard treatment didn't work and he had to be extra courageous.  I learned a lot from them about how to keep your head up and focus on the positive -- how to shut the fear out and refuse to let it control you.  His mother Zena, father Jim, siblings Sidney, Synthia, Tyson, and neice Raija were with him every step of the way and include a powerful circle of family and friends in their "Standing Strong" way of life during Nicky's cancer journey. 

This morning Nicky Paul left us at 2:00 a.m. 

We moved this weekend, thanks to a lot of work on Luis's part and the help of some very dedicated (and well appreciated friends).

Rene is very flexible -- he's good at change. He slept on Thursday night on a mattress on the floor in an empty room.  Friday night on his bed in a new house, that still smelled a little funny, surrounded by boxes. It was very important to him to get his books up on the built-in shelves in his new room.

I just went out to our van to get a hammer and I found our lost shaker of salt.  No one was to blame, as in the Jimmy Buffet song, but we sure were missing it. It was upside down in the pocket behind the driver's seat.  Hmmmm?