Barring any last minute changes of plans, Rene gets to take his father to IKA and eat lunch with his friends and teachers tomorrow, March 1st. This will be his first visit--what a long wait he's had. It approximately marks the one year date for Rene. If memory serves, February 8th was Rene's last day at school last year. He was diagnosed on March 17th, and was pining for his friends and teachers so much those first few months of treatment. He still remembers and looks forward to seeing them. Yay! He is going to have so much fun!
Neuroblastoma is actually a common childhood cancer, but is not well known outside of the world of childhood oncology. Horribly, those children who are diagnosed with High-Risk Neuroblastoma after around age 2, have a survival rate of only 40%! (This news is so horrible, that we protected ourselves from it for months by not asking for statistics. Now, after dealing with it for months I am able to put it up on the blog.)
Some leukemia patients have a 90% chance of survival after diagnosis. I must admit that makes me jealous. I'd like to see that happen for neuroblastoma (and all oncology) patients.
I asked Rene's doctor which group she'd recommend supporting with funds to help improve the outcomes. New Approaches to Neurblastoma Therapy (NANT) and BC Children's Hospital (specifying Oncology) were her two recommendations.
So, then I started reading the NANT web site. My stomach knots when I think about it.
Here's the page that gives the overview about the disease and current survival rates: http://www.nant.org/Patients_and_Families/neuroblastoma.php. What they try not to say too harshly, is that after children relapse, the focus is usually on prolonging the children's life, not curing them - because there is no cure at that point. NANT is all about finding a cure.
Months have gone by since I first read the NANT web site. I've dealt with my emotions and gotten into a space where I can talk about it a little. Mostly, I've had to cry my way into this space. It's a fragile place to be, but the truth is that you have to live your life to live it, not dreading what may never come. This became really hard when we heard that one of the precious little people who finished treatment a few months before Rene has had some return of disease.
Luis and I are very grateful that Rene can participate in the immunotherapy because the hope is that it will teach Rene's body to fight neuroblastoma, thus preventing relapse. The statistics may be changing over the next few years. As parents we'd love to hear that everything is sure, but of course there are no guarantees in life.
Right now we are still depending heavily upon the trust fund created and supported by all of our family and friends in the Rene's Rainbows community. When our family gets back to normal (whatever that is) and can actually generate income maybe this will become my "cause."
Rene got to play in the fluffy snow with his Papa and his neighbor friend! I'm at work enjoying the fact that they are having fun.
It's important that we all take a moment to appreciate how powerful we are. Many of us spend days or even years without relishing our personal power that comes with being alive and connected to the Universe. Of course, we don't have control, but there is a difference between having immense power and having control.
We all have power and we can enjoy it when we share our gifts with others. We can all use our power to bring love, light and joy to any situation -- and sometimes all we have to do is decide to contribute harmony and the work is done.
Rene's birthday at the hospital went down about the way I expected. He was on morphine and not himself.
The Childlife specialist did all the leg work, which I appreciated. I simply wouldn't have done anything for his birthday on the actual day if it weren't for her involvement.
She decorated his room with red streamers and blue curling ribbon and brought him a spiderman balloon weighted down with a HotWheels car. He didn't have much meds running in the morning so he really enjoyed her decorating and the balloon. He was glowing from it when I got there after my night at the Ronald McDonald House. The room looked great.
At 12:50 he asked for a bolis (of morphine) for pain. This is normal about that time of day with this treatment and always causes him to go to sleep.
At 1:00 (a time I picked, and I'm not sure why I did. I kind of knew it would be too late, but earlier just didn't sound much better) the guests that the Childlife specialist had been sure to give special invitations to: his doctor, nurse clinician, social worker and others who have known him all along came. Also, some fellow residents of the Ronald McDonald House who happened to be at the hospital with their children/siblings being inpatients figured out what time and made sure they came.
The cake wasn't there yet, but the adults walked in and started to sing "Happy Birthday" to him. He was fighting off sleepiness and shouted at him, "No! Not yet! Not until the cake is here!" They laughed good heartedly and went back out in the hall to wait.
Thank goodness the cake came at 1:10.
Everyone sang and Rene enjoyed it. He "figured out" that the battery operated candle didn't blow out, but that the Childlife specialist switched it off. She wasn't trying to trick him, but he had missed the finer nuances of what she said and that she just wanted to make it fun so he could actually blow.
I was sitting on the bed next to him and even shot some pictures from this point of view, but I'm not on the laptop so I don't have them to put up on the blog. The Childlife Specialist did the actions of passing the gifts to Rene and cutting the cake, etc. Luis stood back: he doesn't like to be the centre of attention.
Rene wanted to open his gifts as quickly as possible since he was looking forward to them and couldn't stay awake much longer, so he wasn't his usual gracious self.
When it was time to cut the cake he didn't want any. He was sad, "I didn't save room," he pouted. He often gets a little confused like this when he's on the pain medication. He gets part of the point but not the whole thing. It wasn't his fault he didn't have an appetite, yet he still felt like it was.
Then suddenly, I looked down and he was asleep. All the medical staff understood, smiled and scooted out, some with cake, some without. I was grateful for one fellow parent from the Ronald McDonald House who voiced what I was feeling. His face opened with surprise and he smiled, "He fell asleep right now!"
Yup. Just like I'd thought he would -- in fact, I wasn't sure he'd even be awake. The Childlife specialist had encouraged me to plan the "party" saying if he was asleep we'd just put the cake in the fridge and get it out when he was awake, otherwise I wouldn't even have planned it.
They left and I just sat there feeling a little like crying. I had fun during the rest of the afternoon transforming a Bumble Bee transformer from the Hospital staff from a car to a robot. It's a fun toy, but definitely advanced. I'm glad I could do it without Rene so that I can show him without him getting too impatient. He still hasn't asked for it. I keep waiting for him to get mad at me for opening the package, but he hasn't even noticed it. I guess this weekend when he's done with the treatment and off of the morphine he'll be ready to play with it.
So birthday party number 2 wasn't very fun for me, but I'm sure it was the right thing for Rene. He knew it happened and felt recognized.
Thanks everyone for your comments and birthday wishes. I'm passing them on as I receive them.
I find that I get misty when I'm alone and not distracted. It happens to me consistently when I'm in the car and alone. Songs or the thoughts in my head are often bitter sweet.
It happened to me when we sang Rene "Happy Birthday" on Saturday. We've spent the entire year since his last birthday looking straight down the barrel of his mortality and it's really special he's five years old.
Rene's birthday party today at the Ronald McDonald House was a lot of fun. We had a great combination of children who played really well together all day (they're still at it right now). Rene gave hot wheels and doodle boards to his guests and they all played with Rene's new hot wheels set.
There are two older boys in the house, aged 19 and 13, who are making it fun for the younger ones. What a great time!
Of course, if I could have planned his birthday party, I couldn't have planned it better.
Rene didn't eat in over 24 hours. He had a few cheerios for breakfast before the nurses stopped him because they knew he was headed to the O.R. He went all day long. He would tell us, "I'm so hungry."
His energy level was up enough to watch T.V. and stay awake all day because they gave him fluid and glucose through his line. So there he was all day long feeling hungry.
By this evening it was grinding on me watching him. He was so tired. He was getting all teary over his lines. He's attached to them and said he didn't want new ones.
"It's dark already and I still haven't had any lunch," he explained.
People started coming in to see us and ask if we had any questions. 7 o'clock the surgeon said, "but that usually means 8 or 8:30," he was honest.
8:30 came and went.
At 10:00 p.m. we finally got the call to go down. Our nurse helped us take him down in his bed along with the porter. There was one more surprise. No one aked which parent would go in with him to start putting on the gown and hat and booties.
The anesthesiologist was gently telling us to go. Rene was clinging to my hand. "He's going to want me to go in with him."
The anesthesiologist explained to me that at night they don't have enough staff to escort the parents out and they want to give their full attention to the patient so parents can't go in. He offered to give Rene some medicine to make him forget. I just stood there and looked at Rene. I thought to myself, "Yeah, but he'll still cry on the way in." I figured starting to cry myself -- which is what I wanted to do -- wouldn't help Rene be brave. I waited. Then I said, "Rene you can do this." He just nuzzled my hand.
A second went by in quiet. The anesthesiologist said, "So, would you like me to give him some medicine to give him amnesia?"
I opened my mouth and said, "Yes."
The medicine did noticably relax Rene. He let me let go of his hands. He did cry, but I didn't take it too seriously since I'd seen how he relaxed.
I did cry though, but I made it all of the way upstairs to his room first.
I have been emotionally stuck on Rene's birthday and through lack of action have been "ignoring" it. Denial was more like it.
Luckily the support at the Children's Hospital and the Ronald McDonald House is rock solid. Other people will provide cakes and decorations. I just dragged my migraine-incubating body to Toy R Us. I just about sat down and had a good cry in the Hot Wheels isle because the thing I wanted to get him wasn't available. Something about a snow storm out east. I'm in Vancouver. I don't have the time nor the fortitude to be driving all over town to look for toys -- especially since each trip is a challenge because I have to find where things are and driving in Vancouver is intense.
In the end, I moved forward and got a gift that I think Rene will like a lot. After I bought it I got excited. I know I made the right choice.
I was wandering the store for party favors for the other children at the Ronald McDonald House who will bring their cheer and laughter to the celebration when my cell phone decided to actually ring. Luis had been trying to get ahold of me and I had tried to call the hospital room, but various ringers are apparently set too low to be heard.
I wasn't surprised to get some not so good news. I had already been feeling it in my body all morning. The news: Rene is now not allowed to eat because his line leaked fluid last night and he must have a new one implanted into his chest. This has been very stressful for Luis throughout the night and all morning. Luis has never really made his peace with that line and the risks it entails.
They put an IV in Rene's left hand last night and he is dealing with it well. That's a big step for him because he is outgrowing a traumatic emergency room experience from when he was two. Luis must not have gotten much sleep. A volunteer is building things with Rene right now with a construction set while Luis and I have time to do things.
Thanks to the IV in his hand, the interluken-2 is still being infused into his body and he's still "on track" for his treatment.
Birthday. I will just let the people support us and Rene will feel loved and he'll have some fun on his birthday, even if he's on drugs when it happens.
The immune stimulator they are giving Rene isn't causing him any noticeable difficulty and Rene is very energetic.
He has asked the child life specialist to have volunteers come play with him and she sends them whenever she can.
Today someone brought a therapy dog in around 10:15 in the morning because Rene had gotten up at 7:20 and I needed to get out to eat (Rene won't sit in there by himself). Then someone else came in and they played with a plastic ball and game boards converted into shields. I went into the play room to check my email. Suddenly, I heard a loud knocking. "That has to be Rene," I thought. Sure enough, he's sitting on his bed, rapping on the window that looks into the play room. He holds up three of his little fingers and says, "Three, I want three." Sheesh. He was already trying to schedule another volunteer.
I'm so grateful that they come and especially grateful for the men who come. Women always try to colour with him. Men play catch and target practice and building things.
Yesterday a man named Rana came to play and he was wonderful! He picked up little plastic toys from the floor over and over for HOURS. He gave me permission to take a movie and put it up on the blog, so here it is. By the time I took the movie they'd already been playing for hours and Rene was getting tired. He gets sucked into the overly loud (it's the age, I hear) TV but you can see the patience and flexibility of Rana, who knows how to play and have fun without an agenda. I had to put up the shorter of the two movies I took because it's under the file size limit of this web content manager. The longer one shows Rene shooting the little plastic pieces across the room, but you can still get the idea from this one.
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