If you are still reading this blog after it went down for a week and after nothing has been posted for well over a month, you are really dedicated and I thank you for it. Living with cancer certainly gives ample opportunity to strengthen our tenacity!
So, sorry about that week when the web site was down. There were some unexpected technical difficulties and since the web site is managed by volunteers who are busy with their real lives and paying jobs (and not all in Victoria, even!) it took a few days for us to get it all worked out. The dedication of the Rene's Rainbows team is really something special and Luis and I are so grateful for them.
Rene is doing well. He finished his last oral medication against neuroblastoma a few days ago. We were glad to be done with that because it makes his skin peel off. He has a flaky chin and his lips are so bad they look like corn flakes are stuck to them. (That's what one of his nurses, Alan, tells him: "Hey Rene! Have you been eating corn flakes?")
So, sorry about that week when the web site was down. There were some unexpected technical difficulties and since the web site is managed by volunteers who are busy with their real lives and paying jobs (and not all in Victoria, even!) it took a few days for us to get it all worked out. The dedication of the Rene's Rainbows team is really something special and Luis and I are so grateful for them.
Rene is doing well. He finished his last oral medication against neuroblastoma a few days ago. We were glad to be done with that because it makes his skin peel off. He has a flaky chin and his lips are so bad they look like corn flakes are stuck to them. (That's what one of his nurses, Alan, tells him: "Hey Rene! Have you been eating corn flakes?")
The Cornflake Lips
The lips actually gave us a good laugh a few months ago. Rene's nurse told me about it. She has been in the gift shop and observed a hilarious exchange between Rene and the volunteer at the shop.
Rene had dragged Luis to the gift shop at the BC Children's Hospital where he loves to buy mint gum. (We parents don't want him chewing it because it has Aspartame in it -- almost all gums do now, but we couldn't stop others from giving it to him and now he thinks it's the best treat ever.) One of the nice people in the gift shop was trying to talk Rene into getting some Chapstick for his lips, but that was back when Rene wouldn't let us put anything on them (he's 5, in case anyone has forgotten, and that means stubborn).
"I don't need it!" he declared. "My dad cuts them with scissors."
The nice lady was a bit shocked by that.
It's the truth though. Luis couldn't stand to look at those lips (and also wanted to keep them from snagging and ripping his healthy skin) so he got out the sharp little scissors.
They have this little routine. Rene stands very still and Luis steadies his chin. Then Luis puckers his lips and mumbles, "Go like theefff."
Rene puckers and holds very still.
"Don't move," Luis tells him and gently snips off the dead hunks of skin. It works like a charm.
Rene had dragged Luis to the gift shop at the BC Children's Hospital where he loves to buy mint gum. (We parents don't want him chewing it because it has Aspartame in it -- almost all gums do now, but we couldn't stop others from giving it to him and now he thinks it's the best treat ever.) One of the nice people in the gift shop was trying to talk Rene into getting some Chapstick for his lips, but that was back when Rene wouldn't let us put anything on them (he's 5, in case anyone has forgotten, and that means stubborn).
"I don't need it!" he declared. "My dad cuts them with scissors."
The nice lady was a bit shocked by that.
It's the truth though. Luis couldn't stand to look at those lips (and also wanted to keep them from snagging and ripping his healthy skin) so he got out the sharp little scissors.
They have this little routine. Rene stands very still and Luis steadies his chin. Then Luis puckers his lips and mumbles, "Go like theefff."
Rene puckers and holds very still.
"Don't move," Luis tells him and gently snips off the dead hunks of skin. It works like a charm.
Day Care at Last
Most recently, Rene is back in day care twice a week. It is so exciting!!!!
Rene was getting bored at home and is much more relaxed now. I got to drop him off in the morning on Monday and it was such a happy time for me. I felt this huge ball of pressure in my chest when I was holding his hand and going in the gate. I don't think I had been back since Rene got sick and I've been looking forward to it for over a year. It was so wonderful to see the children and the teachers (I got to hug 2 out of 3 -- one more big hug left to go). Rene's teacher told me, "This is such a big victory day." She has such a way of saying exactly the truth.
I dropped off a happy 5-year-old, not a clingy 4-year-old, who waved and joyfully blew me kisses, excited to be going on a picnic with his friends. I cried happy tears (happy ones are easier to cry) as I drove away. "We did it. We did it." I kept saying to myself.
I called Luis from my cell phone to share the joy. He was a little confused that I called him crying from happiness, but he got it pretty quickly.
I'm glad the teachers don't mind caring for him while his catheter ("lines) is still in his chest. That thing is a major risk, but we like to live life on the wild side. We got them a set of clamps, may they never have to use them.
Rene was getting bored at home and is much more relaxed now. I got to drop him off in the morning on Monday and it was such a happy time for me. I felt this huge ball of pressure in my chest when I was holding his hand and going in the gate. I don't think I had been back since Rene got sick and I've been looking forward to it for over a year. It was so wonderful to see the children and the teachers (I got to hug 2 out of 3 -- one more big hug left to go). Rene's teacher told me, "This is such a big victory day." She has such a way of saying exactly the truth.
I dropped off a happy 5-year-old, not a clingy 4-year-old, who waved and joyfully blew me kisses, excited to be going on a picnic with his friends. I cried happy tears (happy ones are easier to cry) as I drove away. "We did it. We did it." I kept saying to myself.
I called Luis from my cell phone to share the joy. He was a little confused that I called him crying from happiness, but he got it pretty quickly.
I'm glad the teachers don't mind caring for him while his catheter ("lines) is still in his chest. That thing is a major risk, but we like to live life on the wild side. We got them a set of clamps, may they never have to use them.
Life is Hard
I, personally, have had some challenges since another family member is seriously ill. Much of my attention and emotional energy have been focused on that situation. The good thing is that I am well supported by work, friends, and family so I am able to strike the best balance possible.
Life is Good!
This spring we've had some time to re-connect with friends and go on a couple of play dates, even. It's so nice to be re-integrating into our home community. It feels good to be home!
We were even able to have some friends we met at the Ronald McDonald House come visit Victoria. It was a blast and so nice to enjoy our new friendship. In fact, another family we met at RMH hosted all of us at their house for dinner on Father's day. The three fathers -- all from drastically different walks of life were joking that it certainly was modern times because they spent their father's day celebration in the kitchen cooking. It was their own fault, though, because they wanted to eat Luis's tacos that they'd enjoyed so much at RMH.
The children -- all cancer-free -- played so happily together.
This spring, a family friend gave Luis a trailer bike that they had in storage and so he and Rene have gone on some bike rides. It's the cutest thing. Rene's legs were still pretty weak when they got started. He just sits back there and pedals every once in a while. He loves being able to live life at his customary pace even though he's not so strong yet -- thanks to his father's strength and engery.
At one play date this was very clear. We had the children on bikes and Rene could NOT pedal uphill. He cried and told me, "If papá were here he would go ZOOM way to the end of the trail."
When the date that Rene would have had to return to in-patient treatment came up, Luis and I celebrated because Rene was going to be able to keep on re-building his muscles and not lose them sitting in a hospital bed. He can even go down stairs facing forward now!!!
We were even able to have some friends we met at the Ronald McDonald House come visit Victoria. It was a blast and so nice to enjoy our new friendship. In fact, another family we met at RMH hosted all of us at their house for dinner on Father's day. The three fathers -- all from drastically different walks of life were joking that it certainly was modern times because they spent their father's day celebration in the kitchen cooking. It was their own fault, though, because they wanted to eat Luis's tacos that they'd enjoyed so much at RMH.
The children -- all cancer-free -- played so happily together.
This spring, a family friend gave Luis a trailer bike that they had in storage and so he and Rene have gone on some bike rides. It's the cutest thing. Rene's legs were still pretty weak when they got started. He just sits back there and pedals every once in a while. He loves being able to live life at his customary pace even though he's not so strong yet -- thanks to his father's strength and engery.
At one play date this was very clear. We had the children on bikes and Rene could NOT pedal uphill. He cried and told me, "If papá were here he would go ZOOM way to the end of the trail."
When the date that Rene would have had to return to in-patient treatment came up, Luis and I celebrated because Rene was going to be able to keep on re-building his muscles and not lose them sitting in a hospital bed. He can even go down stairs facing forward now!!!
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