waiting sucks
No word from Dr. P as of Wednesday, but that was expected. We hope to have results by later on today (Thursday; it's almost 1 am as I write this...). As promised, I will post results here and on FB as soon as we get them.
Today was an okay day. Ryan was still in good spirits, but he was a little more rambunctious than usual. He was a bit naughty during homeschool and also during speech therapy. I think he senses the cloud of chaos and anxiety that has settled over us while we wait for the results. Teacher Maryl said that sometimes Ryan truly has a difficult time focusing on schoolwork and he struggles, but today, that was not entirely the case, and we agreed that he was being a bit defiant and pesky. I tried to motivate him to focus & behave with promises of a walk, a trip to McDonalds, the ability to go outside and water the plants together (he loves being in control of the water hose; what 6 year old doesn't?), but it was hard to get him to commit/focus on our conversation and digest the fact that I was asking him to BEHAVE. He wasn't entirely naughty, just periodically throughout the day...
This morning we woke up around 8 am. I was tired from falling asleep at around 3 am again. He said he didn't feel well, and that his tummy hurt, so I brought him a Zofran and told him that we could go back to sleep together for a little while. Not!!! He was up and running, so I grabbed a bowl of cereal for him and turned on some PBS types of cartoons/programs. He finished his cereal and then he wanted to lie down on the couch with me under some warm covers. We got up just before Maryl arrived. I was soooo tempted to call Maryl and cancel school at the last minute... I have not been motivated to do anything with the results hanging over our heads, but out of reach.
After speech therapy, as promised, we watered the plants in the front and back yard and then left to grab a bite to eat, picking up the girls on the way out. They were a couple of blocks away from home when we saw them...
When we came back, we all ate, and started cleaning a bit. Ryan got to go outside and play for a while... Just trying to keep busy. But getting motivated is such a struggle right now. I keep feeling like I just want to take a nap and not deal with any of this.
...Today (or yesterday, I should say), something really incredibly tragic and sad happened to a pediatric cancer survivor family... I heard about it on FB... They live in Cincinnati, and they are a family of 5 (2 parents and 3 kids). The father, Brian Dulle, was a police officer, and he was killed in the line of duty very early on Wednesday morning. The eldest child is only 10 years old and she was first diagnosed with Pleural Pulmonary Blastoma in 2003, she relapsed in 2007 (but is cancer free today), and now this!! My heart is breaking for this family. I can't imagine going through everything they have gone through with their daughter (I can soooo relate because of Ryan's situation and our fight against this disease the past 4 years), only to have a spouse killed IN THE LINE OF DUTY. It just boggles my mind and makes me so sad and angry for them!! I can't even begin to wrap my head around the heartbreaking and precarious situation that this woman now finds herself in, with three young children and now her husband is gone. Killed by some effing idiot who had no regard for life or respect for others.
Anyhow, thinking about their situation made me put to put our situation into perspective today. I have told myself and also shared with a few others this thought that no matter how bad you might think your situation is, sadly, there is always someone out there who has it worse. Things can ALWAYS be worse, and today I was reminded once again to be grateful for all the good I DO have in my life instead of dwelling on the shitty stuff. I am so incredibly sad for the Dulle family.
Next week also happens to be National Police Week, a week which "recognizes the service and sacrifice of U.S. law enforcement. ...National Police Week pays special recognition to those law enforcement officers who have lost their lives in the line of duty for the safety and protection of others." Pretty sad stuff.
Sorry to be such a downer this week, but that's how the roller coaster of life operates...
...Another sad event is the passing of a beautiful little boy whose nickname was Rockstar Ronan.
Ronan was only 3 (I think his birthday would have been tomorrow or sometime this week, which would have made him 4), and he was robbed of childhood and his life, despite an extremely courageous battle, by neuroblastoma (which is another type of pediatric cancer). We are good friends with two other peds families, one who has a child who is a neuroblastoma survivor, and the other who has a child who is a PPB survivor, and so this hits especially close to home.
I have been staying up because I haven't been able to sleep at night because I'm preoccupied with the fact that we don't have Ryan's results yet, and I have been compelled to read Ronan's blog from start to finish (I am almost done). I hope his mom doesn't mind if she ever finds out that I borrowed the following post because I'd like to share her words on our blog tonight. I can SO RELATE TO HER in so many ways and I'd like for the truth to be told about pediatric cancer. Here is her post from February 24, 2011 (I could have easily written it myself because I can relate so much, but she is much more eloquent):
"Dear Cancer,
I will never love you. You will never be my friend. You have taken my beautiful life and ripped it into shreds. I have watched you hurt my child over and over again. You have taken his beautiful strong body and tried to weaken it, his bright blue eyes and tried to dim them, his fierce spirit and tried to kill it. I have watched the tears he has cried, the pain he has felt, and the sadness you have brought. I have watched the way you have taken away our time together as a family, how you have tried to break us, how you have tried to rip us apart.
Do you see me? Do you see the pain in my eyes, the thousands of tears I have cried, the fear on my face? Do you know what it is like to have your worst nightmare come true and to not have any control over the outcome? What it’s like to watch the people around you be scared and feel your pain too? To watch them as they either choose to stay in your life or run the other way? The lessons you are teaching me are insightful indeed, but I would rather have learned them by being educated on Childhood Cancer. Not because you were going to put my baby through this.
Now, I sit and wait and fight. I have no choice but to take the lessons along the way with dignity and grace. To find the beauty in the ugliest days. You want to break me, but you won’t. You want to take my child, but you can’t. I will stop at nothing to destroy you and all you have done to our family. I will cry my tears in the shower and you may knock me down, but I will get back up. The love I have for my son will get him through this; that I can guarantee. Someday, I will show you whose boss. Someday people will start paying attention and cures will be found. Until that day, I swear to you that I will stop at nothing to get rid of you forever.
I feel sad for you because you must not know what it is like to have a mother’s love. A love so deep and pure, that it can conquer anything. A mother’s love will get you through the toughest storms and keep you warm the entire time. A bond so strong, that it can survive the toughest waters. Each time I kiss the top of my baby’s bald head, I think of you and what you have done. Don’t you know that this child is half of me? Our bond is so unbreakable that it is if we are one. So, when you decided to pick him, you picked me as well. And I will stop at nothing to protect him and get him well.
So Cancer… I think it’s time for you to go. You are not welcome here and I hope you are prepared to lose this fight. We are much too strong of a team for you to destroy. You have made your mess and we will happily clean it up. When all is said and done, and you are gone forever we will go back to living our life the way it was before. Except this time, nothing will be taken for granted and the simplest things will now be the most beautiful. We will live everyday knowing how lucky we are to have the most 3 most important things: Love, Health, and Thankfulness. Life will once again be carefree and joyful. And although our wounds are deep; they will heal over time. We will get our life back as a family, before you came here like a Tornado and turned our lives upside down. Each day that passes by, is a day closer to getting rid of you forever. You have burdened our lives only to bring us more beauty than we ever knew existed. I really wish I could say thank you for all of this but I cannot. I am going to say a big Fuck you to you instead. SO FUCK YOU CANCER!!!!!!!!!!! Have a really beautiful night. And no sweet dreams to you.
Sincerely not your biggest fan,
Maya M. Thompson
Rockstar Ronan’s Mom"
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