Thursday, July 28, 2016

Happy Birthday!

I can hardly believe that KK turns 14 today! The sweet girl I met 8 years ago is growing into a beautiful, faith-filled young woman. I am so proud to be her mom.

KK's "first" birthday!

Would you take a moment to leave a birthday message for her in the comments? I know she would be thrilled to read them.

Friday, July 15, 2016

God Gives Us Hope

During Backyard Clubs this summer, we follow the story of Joseph as found in Genesis.

On Mondays, we focus on the truth that God give us hope. After having the kids act out the beginning of his story, I had "Joseph" sit in the middle of all the kids and we ticked off all the awful things that happened to him. Then we talked about how he could not put his hope in his father, in his brothers, in Potiphar, in the jailer, or in the cupbearer...the only one he could put his hope in was God. I asked the kids to share things that have gone wrong in their lives, then wrapped it up by talking about KK's story. I had to choke back tears as I ticked off some of the things that KK has gone through: 11 different homes before we adopted each other, the brain tumor diagnosis and 11 subsequent surgeries. I reiterated that she couldn't put her hope in the people who said they would adopt her, in her social workers, in medicine or in the finest doctors.

While I was telling the story during the morning Backyard Club, my phone started buzzing away and I wasn't able to answer it. My friend, Jenna, had brought KK to treatment and was trying to get a hold of me. It turns out that The Rothfeld Center received the results of KK's last blood serum test while she was at camp and her numbers were below cancer-fighting range. They wanted to increase her dose of vitamin C back up to 75 grams. KK was nervous about returning to 75 grams because of the pressure and headaches she remembered and she didn't want to do it without my consent. Since they were unable to get my consent in time, they gave her 50 grams. When I finally got the voicemail and texts, I desperately wanted them to up the dose to get her back in cancer-fighting range but knew that it was too late. It was killing me to think that she has probably been out of cancer-fighting range for the last month. It was at that moment that I realized that I needed to stop putting my hope in the vitamin C and put it back in God.

A couple hours later, Jenna dropped KK off at the afternoon Backyard Club just in time for me to ask her to take Joseph's place at the end of the story. I, again, talked about the things she has been through, then she said, "It was hard to trust people. I learned to trust my mom, then I learned to trust God." KK is such a beautiful example of someone who has put her hope in God!

Tuesday, July 12, 2016

Re-Camp...or Camp Recap

KK "passed" her swim test with the encouragement of Mrs. Bryan. She received her swim bracelet...then never stepped into the water again.

She thought the modesty dance they did to show girls what it means to and how important it is to dress modestly was hilarious. She "peed her pants" when Mr. Ed "apologized" for wearing his booty shorts.

In addition to veggies and hummus, the chefs at HUME were great about providing a nice selection of fruit at each meal and salad was available at lunch and dinner. They tried to "spice things up" by adding things like mushrooms to her usual veggies and hummus so she didn't get bored with her food. KK simply told them they didn't need to bother because she wasn't going to eat those things. She eats a lot of things, but she does not like mushrooms unless they are hidden in food.

Unbeknownst to KK, she had a great impact on a group of girls that were caught up in some middle school teen drama when they saw all that KK goes through and yet still wakes up singing.

KK was excited that her team was crowned champions once again...thanks in part to the work her cabin put into memorizing the Bible passages for the week.

The hardest part of camp for me was explaining to the nurse and others that there are signed DNR papers in KK's rescue med bag. I told them that the papers would need to be brought to the hospital with KK if she had to be transported there, but they were not to be given to the EMTs or the hospital staff...I wanted to be able to make that decision if the time ever came. Thankfully, they were not needed!

Wednesday, July 6, 2016

Get 'Er Done

KK took a little break from all the fun at camp to receive her treatment today. We went to the infirmary, I mixed the meds and accessed her port, then we settled in for a couple hours. KK spent the first half reading and the second half snoozing. That is how we get 'er done at camp!

Tuesday, July 5, 2016

Ride 'Em Cowgirl

KK is having a blast and working hard at HUME New England

Monday, July 4, 2016

IVC on Vacation

KK is at HUME for summer camp again this year!

I spoke with Beth, the nurse practitioner at The Rothfeld Center, about a month ago to figure out how we could continue treatment while KK was at camp in the Berkshires. I mentioned that there was a place about an hour from the camp that administers IV Vitamin C. Beth said it was customary for many integrative medicine centers to help each other and she would contact them to see if they would be able to treat KK one or two times during the week. The receptionist at the other center said they had a waiting list and wouldn't be able to fit KK in. Beth asked Dr. Rothfeld to contact the doctor of the other place to see if he might be able to change their mind. As of last Tuesday, we had not received a response, so we came up with a plan B: I would purchase the supplies to administer the vitamin C myself. Of course, when we went for treatment on Friday, they heard from the other doctor and he said they would fit us in. At that point, I already had my head wrapped around doing it myself, so we declined.

I gave KK a treatment before we left for camp and I will go to HUME on Wednesday to give her another treatment. We will do the same thing when we go to Vermont for vacation in August. It is so nice to have this as an option!

Sunday, July 3, 2016

Don't Change A Thing

KK had a regular clinic appointment at the Jimmy Fund last week. After the nurse practitioner, MaryAnn, asked all the usual questions and examined KK, she said, "Don't change a thing."

High praise, indeed...especially when you consider the skepticism we received when KK first began eating a raw vegan diet and doing colonics.