Getting Involved!

Peyton and I arrived at the clinic this morning with our magic suitcase of fun, bag full of snacks and plans for a day of vegging out and getting some blood. Instead, since Monday, her ANC went up to 1000, her hemoglobin went up to 9.6 and her platelets were over 250,000!!! Those are phenomenal numbers and not what I was expecting at all!

Peyton’s pallor was still pale, her eyes looking bruised, so I told them that I was a little surprised that she wasn’t closer to borderline for needing blood. They were too after looking at her, so we checked the old fashion way. We pulled down her eyelids to check the color….looked good….then we told her to stick out her tongue….now, how hard is it to get the average 3 year old to stick out their tongue….do you know what she says to me? “I cant. I’m too shy.” Get out of here! Seriously! I’m too shy. This kid runs around the house naked screaming “Eat the power!” and she can’t stick her tongue out so the nurse can check the color. We finally got her to stick the very teeny tiny tip of it out and just accepted that it was fine.

Nurse says “When do you come back?”

I say “May 14th!” That’s our next scheduled day for chemo, her counts look great today…what’s the big deal?

She laughs at me. Laughed.

So, we’re going back on Wednesday for a finger poke, but I’m hoping that the counts stay good and things keep looking up. I’d like for her to have a high healthy set of counts to start off the next phase.

On Wednesday we’re also getting to participate in a special photography session at the clinic with a professional photographer who’s going to come in and take some pictures of Peyton…maybe me, but I’m only planning for Peyton at this point. We’ll see if I manage to drop 20 pounds in the next 6 days…are you all holding your breaths too? I swear that since this kid has gotten sick I’ve put on at least 15 pounds….it really stinks, I’m not happy about it and there’s not a whole lot I can do about it at this point. So pray that God decides to get really crazy with the special blessings and drop a weight loss bomb on me! Hey, we can slide that little extra request in on the side, right?

Annnnyway, since we didn’t end up needing to stay at the clinic for a transfusion, we were able to book it downtown for a meeting of the minds. I got to lunch with Sherry Tucker Giving Hope Through Faith Foundation, Heather Duckworth (board member of the Pediatric Cancer Foundation), Holly Wirth Paige Wirth Memorial Trust), Debbie Vessel Carlee’s Mom, Lisa Orlando (Director of something at Pediatric Cancer Foundation), Erica (cancer mom) and Erica’s mom. It was a meeting to toss ideas for ways we can raise awareness of cancer awareness. Did you know that September is National Pediatric Cancer Month? Until this past year, I didn’t. That’s a problem and one of the goals of this meeting was to work on ways to make sure that more people have the needs of the pediatric community brought to their consciousness. We are going to make this a priority. We are going to make sure people understand that these children have needs that are important and critical and that it is all our responsibilities to make sure they have the chance to live long productive lives.

It’s exciting to be getting involved, to find this special purpose. I am so happy to be included in this group of amazing women who have turned the loss of their children into works of astonishing good. How easy would it be to wallow in the grief and let that consume you? They are taking that pain and turning it into energy to make a difference. I love that!! This is God’s purpose in choosing these women, He knows that they can make strides in His names and shine the glory of His power in amazing ways. And I’m getting asked to sit at the big kid’s table!! I hope to be able to help out in some way, to find a way to use my skills to work towards a CURE!

Tonight Pete and the kids and I got to spend the evening with Grandma Sharon and her friend Diane. Diane was visiting from Michigan, and this lady has a special place in the lives of Pete and his mom. It was a wonderful time to spend with her and to just talk and share all that’s been going on with her and with us since the last time we saw her.

Sharon is already rearranging her summer schedule so that she can help me with the kids, trying to find ways that she can relieve some of my stress with clinic and kids and trying to get everyone where they need to be when they need to be there. She is such an awesome mother in law and I could not ask for a more loving grandmother for my children….no offense, Mom, you know we LOVE you too!….but she is truly a support that never fails to be there for us no matter what and we are grateful for the blessing that she is.

Nathaniel has a mad toothache. I have to find an emergency dentist for him in the AM…we lost our dental insurance due to a major snafu….but he was such miserable pain he was in tears tonight. I gave him a Tylenol PM and promise that we’d get it taken care of. Poor kid, he’s not a complainer and I could just see how miserable he was. He curled up with me and just wanted some mom love and I was just thrilled to the tips of my much-needed-to-be-painted toes!! He’s getting to that age. That don’t embarrass me age…don’t kiss me in front of my friends age….can you walk behind me stage….and he curled up on my lap and just snuggled. Awwwww…he’s still my baby. Yeah, it may take crippling pain to get him to do it but I’ll take it however I can get it, I’m not proud!!

Tomorrow I am meeting with friends to see about organizing something in an attempt to raise funds for my family. This is so hard because I have no problems asking for money for other people, I can shamelessly ask for anything in the name of a good cause, but when it comes to myself….that’s hard. But in having to give up working, my family gave up the income that paid for the tuition for the kid’s school. I know that most people would think “dude, it’s private school, get over it and just move them to a public school.” But these kids have been through mom being sick and hospitalized and in physical therapy and working to get back into fighting form for them….then they’ve had to deal with all the changes of life with a cancer sibling. So much change has been forced on them in the past two years and the only stable thing in their lives has been their school, their friends, the environment of love and God-filled people who support and encourage them each day. This is one more thing that Peyton’s cancer is threatening to take away from them and I’m going to swallow my pride and do whatever I have to do to find a way to keep them in this wonderful place that they NEED. Please pray that this effort is met with success and that God finds a way to answer this prayer in my heart.

I continue to ask that you all keep the Taylor Arrington family in prayers as they prepare for the viewing and burial ceremony for Taylor. I admire the fact that they’ve insisted on NO black, brown, navy or somber clothing whatsoever….they want casual clothing for a celebration of her life. We need to celebrate that she is safe and loved in the arms of the Lord!

Ok….I’m going to drop this out there. Many comments have been made that I should turn this journal into a book. If anyone has any kind of connection to someone who would know how to get that ball rolling I’m more than willing to do it. I love to write this journal, it’s emotional and honest to who we are and therapeutic. If I can find someone who’d like to help me turn this into a book then I’m all for it, and if that happens then I’d like to make sure a portion of all sales would go to the Pediatric Cancer Foundation and the Children’s Cancer Center.

f.r.o.G…fully relying on God
—-Anissa