As most of my blog followers know, tomorrow is our rain date for Day at the Drags.
Because Charlotte's levels have FINALLY rebounded, it was decided we should bring her with. And it's making me sick with worry.
It does seem sort of sad to feel this way, but I am utterly co-dependent on our hospital, and we are going out of state. Two and a half hours away. Kevin doesn't think anything will happen, and to be honest neither do I, but the thought still lingers in your mind...what if?
Cancer seems to be full of what-ifs... something you go through your entire life trying to ignore. But in this instance, it turns out to be something you can't simply drown out with practicalities, probably because as far as Neuroblastoma goes there actually AREN'T any practicalities. It's a disease with a personality and agenda of it's own. It almost feels like it's own entity.
Like, Hi, nice to meet you, here is my daughter Charlotte, and by the way, here is her cancer, Neuroblastoma; and please don't mention chemo because that REALLY pisses it off, and I'm not in the mood for a fever spike. Thanks, appreciate it.
Something amazing happened today that renews my faith in the human race as a whole.
For as many times as you hear in the news about suicide bombings and mother's leaving their babies in dumpsters, when a story comes along like this it is almost unbelievable.
We had someone from our human resourses department come visit this week from North Dakota. Her name is Sheila Marquart, and she visited with me and I gave her the jist of our story. Turns out she has been reading my blog, so she had a pretty good idea of what was going on already, but she requested some bracelets for the staff in ND. So I sent her a bag of 48. (And made a mental note to tone down the language when necessary).
This morning when I got to work, this was in my inbox:
Hi Kristi ~ I want you to be aware that the following email was sent to all of our North Dakota staff today!
Best wishes to you and your family! You are in my thoughts and prayers daily!! Take Care!!
Sent: Thursday, August 13, 2009 3:15 PM
To: &All North Dakota
Subject: Kristi Rufener
With Kristi’s permission, I’d like to share the following –
Some of you may know that Kristi Rufener, Lead Teller in our Madison bank, and her husband, Kevin welcomed a new baby girl, Charlotte to their family earlier this year. Baby Charlotte was also welcomed home by her big sister, Rebekah. Little Charlotte is 6 months and two days old today. What you may not know is that at the age of 4 months, Charlotte was diagnosed with a Neuroblastoma in her chest.
Neuroblastoma is an aggressive solid tumor cancer that strikes mainly young children and has less than a 30% chance of survival when evidence at diagnosis shows that the disease has spread. Neuroblastoma is the most common cancer found in infants, almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors. Neuroblastoma is the third most prevalent pediatric cancer and has less than a 30% chance of survival when evidence at diagnoses shows that the disease has spread. There is no known cause or cure for Neuroblastoma.
Charlotte is currently undergoing treatment - and in an effort to offset the medical expenses, Kristi is selling “Cure Charlotte” bracelets for $5 each. A supply of the bracelets is located in the HR department. If interested, please contact Tania Christian at email@example.com to purchase/donate today. Thank you!
Below is an excerpt from Kristi’s blog which chronicles their efforts for Miss Charlotte.
Tuesday, August 11, 2009
Charlotte was in for an MRI last Friday, in which she had to be put completely under.
I asked about sedating her instead, but it sounded like even under sedation babies can move or snore and screw up the picture. Snoring screwing up an MRI- can you believe it??
So they put her under, and Kevin and I wandered aimlessly around the hospital for two hour while we waited for her to go to recovery. They had to put a breathing tube in, so we had a hoarse baby for a few days as well. Every time she coughed it sounded like she had croup.
And then Kevin and I waited anxiously the rest of the day for the results…
…I had literally just got done telling Alex that I was expected an important phone call with the MRI results when my phone rang.
It was doctor Catrine.
"Hello! How are you? I have Charlotte's results!"
"Wow, you sound cheery!"
"I do? It must be because I actually got some sleep last night."
"Ha, that would do it..."
She went on to explain that her and the radiologist compared Charlie's scans, and that the tumor had shrunk- get this- over thirty percent!
I could have cried in relief, except for what she said after that.
"She IS going to have to have eight cycles of the chemo instead of four, and unfortunately, her blood levels aren't high enough for her next round that we had scheduled this Monday."
Eight cycles of chemo- that takes us straight to the holidays and snow plowing season.
Eight cycles of chemo- that means Happy First CANCER Christmas, babe.
Eight cycles of chemo- no day care, no playing with other kids, no cute little fuzzy hair to put bows in for a year...
And I was in tears. THEN I got this email:
Kristi: We’ve sold out the supply of bracelets Sheila brought back with her! Do you have more we can sell? If so, just send them via Starion Financial mail to me here in Bismarck.
My thoughts and prayers are with Charlotte, and your entire family…
All 48 of them already!! It's only been a day! Can you believe it??
I can't describe what it is like to work at a job where you are essentially just another family member, and everyone pulls together to do what they have to do for you.
I asked Renee today what she thought I should do- and she said just say thanks. That's all you can do.
So it would seem that I am going to be thanking people until I am blue in the face, and still feel indebted.
But thanks, just the same!
Chemo on Monday- three cycle. Expect updates from the hospital as needed. She gets her stitches out for her Hickman, and then no more dressing changes! YAY! *Insert sigh of relief here*
On a HUGE side note- Charlie has finally regained enough strength to start propping herself up on her elbows again. So I will leave you with pictures of her doing that.
Have a great weekend, and God bless!
Friday, August 14, 2009
Just An Unordinary Day
Posted by Kristi Bemus Charlotte's Mom at 5:27 PM
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Just stumbled upon your blog this morning. I remember the worry of being too far from the hospital when my son, Max, was in treatment. We held a mantra close to our hearts that propelled us to do things we may have otherwise been too conservative to explore:ReplyDelete
Live Life to the Max.
Everyday is gift. I think you found that with the bad news that comes so frequently during treatment, there is always a light (your amazing bracelet seller for instance!). Hang in there and take care of yourselves.