I'm really excited to attend the fundraiser Handbags for Hope. All of the funds raised will go to neuroblastoma research! http://www.team4hope.com
At bed time Rene put the gerbils' terrarium into his room, laid some quilts next to them and snuggled up to watch them.
Later, snuggled in his bed he said, "It's fun taking care of gerbils."
He took their wheel out. I hope they get enough exercise.
One of my coworkers brought over her children's gerbils today. I had some doubts, but I'm proud of myself for getting this going. Rene looked forward to it and is enjoying that they are here. Now that he's eight he's very gentle and sensitive to not forcing them to be held. He's content to let them be content. We're really appreciative that two children would share their pets with Rene.
So, here it is. We have some more information about Rene's upcoming treatment!
Thanks to Rene's wonderful nurse practitioner in Vancouver, we finally got the oncology booking clerk at Seattle Children's to call us and leave a message with her phone number. The clerk had us scheduled to go next Tuesday to an intake appointment for Rene in Seattle! Good thing we found out about it, or we would have missed that one.
At the appointment on Tuesday we'll meet key members of the team and learn the details of the MIBG treatment. Likely the inpatient stay will be around 8 days, but we'll learn more on Tuesday.
Rene will be admitted to Seattle Children's hospital on March 10th.
Rene's social workers have been working to get funding from charities for our transportation, food, and accommodation and it looks like that will work out. Once we know for sure, I'll tell you which charities they are so you can support them in the future. ;)
By the way, parking is free at Seattle Children's Hospital.... Ahem. (cough) Victoria General and Vancouver Children's.... Ahem. (cough, cough).
Everyone at my work is being really, really, amazing and supportive of my major need for a work/life balance.
Also, thanks to everyone for doing the wonderful fundraising! The streak of leave without pay for me is just beginning and it is so wonderful to know that we'll be able to pay rent and cover any other costs not captured by the charities that the social workers have contacted. We really, really thank you!
I've been in touch with the social workers, getting a hold of the oncology booking clerk at Seattle Children's, organizing my absence from work, and communicating with key family members. It's a lot of work keeping everyone in the loop, but everyone is being absolutely stellar and helpful. Luis and I still feel a bit maxed out. It's been a few years since we were newbies at an aspect of Rene's treatment. We're rather nervous, but do feel confident that it'll be all be fine in the end. We're as set up for success as possible and more well supported than we'd dare have dreamed.
A couple years ago another mom at Oaklands introduced me to World Community Grid, which is a system where people allow calculations to run on their computers while the computers are on and idle. I signed up to let our computer run a program analyzing drugs that might kill neuroblastoma.
The article says, "[t]hanks to the contribution of over 200,000 World Community Grid members, the researchers were able to screen three million compounds and identify seven that destroy neuroblastoma tumors in mice without causing any apparent side effects." Of course it will take years for the human trials that are required to know if they work, but I'm glad to know we are one step closer. I feel like one of the next breakthroughs will buy Rene some insurance!
Here is a link to the three paragraph article on it: http://www.worldcommunitygrid.org/about_us/viewNewsArticle.do?articleId=342
C.G. thanks for telling me about this!
So, the big question that I knew I was going to get came today at bedtime.
"Mama, am I going to die in a year or so?"
"Because So-and-so said that his mom looked on Rene's Rainbows and it says I'm going to die in a year or so."
I love Rene so much. He chuckled. "I mean WHY would I DIE?" He chuckled, his little that-is-the-most-rediculous-idea laugh and settled into bed.
I took the opportunity to tell him that because of the toonie drive people will be thinking about cancer. Grandma died of cancer, and probably other people's grandma's have died of cancer, too, so they might think that.
I love Rene's total confidence in his birthright to a long life.
Live. Laugh. Love.
My sister and brother-in-law were able to bring their adorable son over for our Christmas visit this weekend. Originally, our family was planning to go visit them for Christmas, but when Rene's relapse was confirmed, we had to cancel our travel plans. Due to various reasons, the visit didn't happen until this weekend. It was a lovely visit and one of my favourite parts was seeing Rene dote on and play with is little cousin. Rene is a very fun and loving big cousin.
We went to the walk/run that Madrona's lovely family hosted to observe her birthday expecting to have a chance to support another family, but when we got there, we were welcomed as guests of honour! Madrona's parents had decided to support four families, and our was one of them. We had a great time walking (Rene, me, my sleeping nephew and my brother-in-law) and running (Luis and my sister) in the wonderful sun that came out. OK, well, Rene was running ahead of us. My brother-in-law was worried we'd lose him in the crowd. He was passing people with the stroller, trying to catch Rene but not run people off of the sidewalk. He was not going to lose his nephew! Then, I recognized the people Rene had caught up with, so I told him that Rene was safe and he could relax.
Thank you to Michelle and Rafael for your support to ours and other families.
Also, thank you to everyone in the community who is supporting the toonie drive, donating on line or at Island Savings. We still haven't heard from Seattle Children's, but when we do, we'll have more of an idea what the costs will be.
Well, I'm "out" at my yoga class now. I often cry during the deep relaxation at the end of yoga, but it's really good for me to get some tears flowing since I'm always trying to be OK. I never told anyone were all that sadness was coming from and there was no need to explain. No one even really seemed to notice. Tonight, the instructor put it together and asked me if that was my son that the toonie drive was for. She gave me a wonderful hug.
The class is in the same room as Rene's after-school care and I always lay near Rene's name tag on his coat rack. They left it up, even though Rene doesn't go right now. I wonder if there will be one for him there next year. It's so sad.
Why is it that people don't just stand and hug you and let you cry for a long time? Crying makes you feel better afterwards, but people always avoid crying.
It's very rare, but Rene threw up this morning. He had just taken his anti nausea medication and we weren't sure if that came up, too. Afterwards, he snuggled with his grandfather, who is visiting, then ate a light breakfast and snuck over to the TV remote control. We played the typical, "turn that off, please" game until it was time to go to chemo.
I was touched that he was looking forward to me going to clinic with him since I have Friday off. I would have loved to go, but I owe Luis a LOT of hours of house cleaning. Rene's aunt, uncle, and cousin are coming for our Christmas visit (finally!) so I stayed home to clean and make room for 7 people in 732 square feet of apartment!
Rene was really flexible about me not going to the clinic and gave me a sweet kiss before he went off, happily, with his grandfather and father. How does he do that?
I took myself to the chiropractor because I've been having intense headaches from tension in my neck. I guess she didn't see me on CTV the other day, batting my eyes like I was about to take off in flight (it doesn't show, but I was trying to see through some tears). She told me, "You could bounce a quarter off of your shoulders." I told her it was from the commute to my new job, which wasn't a lie, just an omission. ;)
I went to the grocery store and didn't have to cringe at the expense. This is where my inadequate thank you comes in: Thank you for taking the stress out of my grocery bill!
Luis and I are so grateful for the support that people are pouring out for Rene. We wish we could thank you all in person with big, big hugs.
While I was out, I stopped by Oaklands to get Rene's reading homework so that we can attempt to keep him up to speed. I was surprised (and shouldn't have been) that I had 2 BOXES of valentines to bring home for Rene. Now that's some fun reading homework. I had a peek at few and they are gorgeous! There are some great artists at Oaklands.
Rene won't see them for a few more hours. Luis called around mid-day and told me that Rene's hemoglobin is just below the threshold where they consider transfusion. Sometimes he just rides it out, but he feels really tired due to the lack of oxygen circulating in his body. Since it's likely to go lower (his counts don't bottom out until all of the chemo has taken effect and that is a few days after chemo ends) and since we'll have visitors this weekend Luis decided to go ahead with the transfusion. They won't get done until about 6 pm.
This brings up the topic of blood donation. Madrona's family is having a run in her honour, to SUPPORT ANOTHER CHILD FIGHTING BRAIN CANCER. Hopefully everyone can go. It's on Sunday at 9:30 am at Frontrunners downtown and Madrona's parents are reminding everyone that blood donations also help all cancer patients. Rene is proving the truth of that today with his transfusion.
I guess that's all for now. I have to go clean.
Thank you all for being wonderful human beings.
I'm just in awe at how generous and loving people are.
The fundraising that people are doing for our family is really going to help. We have a long road ahead of us and it's not paved with daisies.
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