I read something yesterday that said, “What if you woke up tomorrow and all that was left was what you had actually thanked the Lord for?”
Yeah…it made me think that even though I have so many things in my reality to be thankful for, I need to spend more time actually thanking God and less time yelling at Him.
Today was one of those days.
I was reminded again of the reality we are actually in, and this time, it hit me quick! Seriously, it was almost like being 9 months pregnant and all of the sudden needing to pee…like, “OMG, tie your shoes, tie your shoes, keep tying your shoes. Oh crap, I’m wearing Toms” until you can compose yourself enough to stand back up and walk to the bathroom!
We were at the clinic, and Kicker had just been accessed. This means that the nurse had just put a needle through is portacath to be able to take labs and administer chemo. After we were sent back out to the waiting room to wait for the labs to come back, I just looked around the room that was filled with babies, kids and teenagers.
They were all bald.
Their faces were grey.
And they looked exhausted and very, very sick!
Then, this sweet little baby who couldn’t have been more than 7 months old, was sitting in her car seat with an IV line hanging from her arm. She was bald…but not just baby bald. There no eyelashes and no eyebrows bald.
As Selah sat in my lap, I did everything I could to busy myself playing with her so I wouldn’t start crying.
The clinic door opened and in comes another family with a bald toddler wearing a mask and holding a bottle of Zofran, anti-nausea medication, with a death grip.
Again, I quickly looked down towards Kicker to help him color his dinosaur picture. I just couldn’t look up because if I did, the tears would have spilled over, and I wouldn’t have been able to stop!
Thankfully, the nurse called us back soon after, and we “escaped” to the infusion lab.
Ugh…the infusion lab!
Just picture a big, cold, stuffy office filled with cubicles with no sophistication. Instead of short walls surrounding each desk space, there are curtains. Instead of emails and faxes, the occupants are receiving chemotherapy and Zofran. And instead of the sounds of phones ringing and light buzzing, you hear vomiting and crying.
The nurse assigns each person their “chair,” and because Kicker knows his numbers, one of his favorite things to do is find his chair. Today, we were number 9.
Walking to our spot, we passed a sweet teenage girl laid back in her chair. Her face was so puffy from the steroids that I could barely see the whites in her eyes. She was wearing some adorable skinny jeans and a new pair of Toms. And her mommy was rubbing her bald head and saying quietly, “It’s going to be ok honey. It’s going to be ok.”
Then we saw our first hospital roommate, sweet little Alex. He is 5 and has stage 4 Neuroblastoma. I asked his mom how he was doing, and all she could do was nod her head, “no.” And when I asked her if he had been hospitalized since we were with them, she shared how he had been admitted 4 times since December.
Finally, we got to chair 9.
I got out the iPads, the coloring books, the snacks and water. Kicker then saw his “robot,” aka. IV pole, and immediately started telling sissy all about how the robot gives him his super power juice. I just smiled as I watched his strength and pride in what he is going through. But that quick moment of admiration was interrupted by loud and strong sounds from the “cubicle” next door and their dry heaving.
She couldn’t have been older than 6 or 7. She was vomiting and crying to her daddy at the same time, telling him that she wanted to go home. And Selah quickly looked up to me with concern. So, I immediately distracted her so that she wouldn’t say anything inappropriate or offensive out loud.
Everything about this shit is inappropriate and offensive.
There really is no way to hide that or escape it. The reality for most of these children is offensive and unfair. And knowing that there is something that these kids can do to ease their pain, help fight their fight and make them more comfortable is what makes me crazy.
I know that we have been blessed with how amazing Kicker has done. The fact that he has not had one single side effect from 14 rounds of chemo is nothing short of a miracle. And although I know that that could change in a minute, I have to believe that everything we are doing alongside of his conventional treatment is helping!
During our brief meeting with our Oncologist today…
I couldn’t help myself! I HAD to voice my concern about the lack of education and provision for diet and detox implementation. He L-I-T-E-R-A-L-L-Y went silent!
He didn’t respond and uncomfortably packed up his computer only saying, “I will see you next week.”
And that was it!
It’s so overwhelming…to feel so alone in what you know is truth! The minute I begin to question myself and everything I have studied and everything we are doing for Kicker, I am quickly reminded of the reality of most cancer patients. And that is NOT Kicker’s reality.
Trust me, I know that this could all change, which is why we live 15 minutes at a time. But, I know that Kicker is not a statistic. He is outside of the box in regards to his fight with cancer, and I pray that he is bringing light to the need for better treatment for these children.
Our reality gives us many reasons to be thankful.
In fact, our reality is so much richer now. The little moments that used to not mean much, mean EVERYTHING now. As a parent, I would always say, “I never knew I could love someone so much.” But now, I know that that’s not true. It is when you think you could lose your child that love becomes bigger and deeper and more than words could even describe.
Our reality isn’t pretty, but it is blessed. And I pray that God will use us to help other families going through this, to be stronger and help to minimize their pain just a bit.
It is SO nice to find someone who feels the same way as I do! I am a personal fitness trainer and very natural and organic. My son’s oncologist is very aware of this. He is a wonderful christian man, for which I am immensely grateful. However, when he brags to me about going to the gym or trying to eat more natural; I can’t help to think that he should be the one telling us to eat natural! The nurses encourage my son to eat candy and drink sprite. Thankfully, he is 9 and aware of why he can’t do those things. I am a single, widowed mom and this is all so overwhelming. My son also has ALL b cell, but was recently found to have the MLL gene which makes him more susceptible to relapse and secondary cancers. Because of this, they want to move him from the low risk protocol to standard risk. That would mean more chemo, which is not going to happen if I can stop it. So far, I’ve been able to hold them off. I am currently researching foods and supplements which target stem cells, in order to avoid a transplant. Thank you so much for your blog!