A down feeling

One of our favorite nurses at the clinic, Cindy, is leaving our clinic…she doesn’t love us anymore and is just throwing us to the wolves.

Ok, really, I would never call the other nurses wolves, they are fabulous! And Cindy’s really leaving to take her fantastic self to the other Pedi Hem/Onc clinic in St. Pete. Good luck, Cindy, you’ll be so missed and thank you for always being a caring friend and loving nurse.

Peyton had her spinal tap today and it went really well. I was, as always, amazed that this child allows someone to stick a needle in her chest so that they can then jab her in the back with a needle that I do know on a personal basis feels like a 2×4 wrapped in barbed wire being shoved into your nostril. Yet, besides a bit of squirming, she was a trooper. She complained more when we took off the tape that was over her numbing cream! My hero.

Her counts were really great today.

ANC was 1900 (pretty good)
WBC was 3.5 (great)
RBC was 11.5 (best it’s been in months)
Platelets were over 300K! (fabulous!)

We left with our monthly supply of chemo and a raised dose of steroids…JOY….and only 1 more spinal tap with chemo left in her protocol. She’ll still receive them post treatment, but they will just be monitoring type procedures without chemo injections. I guess that’s a bonus.

I have a hard time tonight being real positive about the day. Our friend Brooke Martin’s bone marrow results came back that she’s had a relapse of her ALL Leukemia. I’m just devastated to know that another child’s treatment has failed, that she only had 1 week out of treatment before the cancer came back, and that her family is faced with so much fear and uncertainty. Why why why?

When we were diagnosed, we were swarmed with good news about the outcome of treatment for kids with Peyton’s type of leukemia.

She has cancer…but it’s a very treatable kind with a high success rate of cure.

She has cancer cells in her spinal fluid…but we’ll do a higher risk protocol that’s shown to take care of that and with a little radiation she has as good a chance as anyone.

It will be ok, she’s going to make it.

Over the many months of treatment I’ve heard the most astonishing things come out of people’s mouths.

“That’s the GOOD cancer.”
“That’s the Cadillac of cancer.”
“But that’s not a big deal because they can cure that one, right?”
“Well, if you’re going to have cancer, that’s the diagnosis you want.”

NO…there is NO good cancer, the Cadillac of cancers is STILL cancer, it’s ALWAYS a big deal when your child has cancer, and there is no diagnosis that is wanted. I understand that people want to be encouraging during a time that’s so hard, but these kinds of statements are hurtful and you want to scream “Do you understand that my child could DIE!?? Her very existence is at risk? Please don’t act like it’s nothing.”

It’s been such a disheartening spring. So many relapses, so many fatal infections, so many weakened bodies unable to take the fight anymore….too many funerals. Even the joy of the good things…remissions, end of treatment, chemo finished, ports removed…has been dimmed by the grief and the losses. I don’t know if I’m going to say this clearly, but for me, it feels like the bad is definite and the good always has a cloud hanging overhead.

It’s unbearably difficult to see another young friend relapse, to feel that blow to the confidence that my child will make it. Lately it just feels like the “possible” becomes “inevitable”. That’s no way to face it, it is giving up in a way, but when you feel the pain and loss all around you, it’s hard not to be afraid that you’re next in line.

On Sunday, I was sitting in church, listening to the preacher talk about “Why me?” It hit so close to home, in fact, it hit so close all my windows rattled. It was the message that we have expectations of our lives and what we are supposed to have and do and when those expectations aren’t met, we feel “Why me?” Mark talked about the fact that although those of us with faith in God’s plan know the comforting verses and we are constantly reminded of the purpose and plan in action, it doesn’t always offer the comfort we wish or relieve the pain the way it should. We are left with frustration and doubt and anger in its wake. He went on to talk about our choice to continue to believe or to let the doubt take over us, and how God guides us to make the right choices and strengthens our faith through the roughest times.

I sat there and listened to this message, feeling like “Why me? Why so many of my friends? Why are these things happening to such good people and innocent children
?” And I bawled like a baby. Cried and cried and cried. Trying to be subtle about it because I didn’t want to get up and leave and miss something, but crying too hard to keep sniffling into my own hand. So, I reached into my big bag of everything and scrounged for a Kleenex. There was none.

But I did have an Always maxi-pad.

I had to rip off the little wing and use it to wipe my eyes, I refused to use the thick part. No pride….none. It was very absorbent, I’m should write them a letter of thanks.

But after I got that out of the way, I felt so much like God was talking to me, just letting me know that it was ok to feel discouraged and to be angry and resentful that His plan for my life included such an enormous ball of crap….and what feels like a constant barrage of crapballs coming my way. But at the end of the day, I’m able to reach out in prayer, know that I can vent it all out to a Lord that wants to hear it, and still feel that love and comfort knowing that it IS the plan, that it’s beyond my understanding but hopefully I’m doing whatever it is that He wants me to do. Not sure what that is exactly, but if I find out I’ll be sure to let you all know I got the memo.

I just ask that everyone keep these sweet kids and their families in prayer, blanket them with prayer and love.

Brooke Martin, Jimmy Reichert, Connor Hernandez, Lindsey Ballinger (name:LindseyRose), Justin Gaudineer, Joshua Czorapinski (name:Joshuaczorapinski), Leo Astacio, Nikki Hawkins, Mandy Willis, Presley Dickson (name: PresleyD)and all the others.

Also ask for strength and healing for all the families missing their children, learning the new normal and getting through one moment at a time.

The Kesler family, Gunn family, Gliddon family, Potterbaum family, Deal family, Lester family, Muldoon family, Ramos family, Duckworth family, Tucker family, Wirth family, Arrington family…and those are just a few of the ones in my head, blanket them all as well.

Thank you to each person who follows our site, who offers encouragement and support….we feel it, it strengthen us and gives us such a feeling that you are part of OUR purpose. We have so much love for those that comment, email, leave your message of support and who cry, laugh and love along with us….we love our “lurkers” too! Thank you.

f.r.o.G…fully relying on God
–Anissa