Doctors, Trials, and Different Tumors...Oh My!

Thank you to all who continue to pass on info like the Duke University polio virus trial. Unfortunately, many of the trials and names of doctors are for adults only. The other thing that needs to be considered is the kind of tumor it is (KK's is a Glioblastoma Multiforme grade IV).

I know that Dana Farber/Children’s Hospital is on top of all the state-of-the-art neuro-oncology care and they are geared specifically for kids and teens.  Here is the link to the doctor that our friend has connected us with:

http://www.dana-farber.org/Health-Library/Mark-Kieran,-MD,-PhD.aspx

Jesus Loves Me at HCA

KK had an opportunity to visit HCA on Friday where both Teams A and B sang "Jesus Loves Me" with KK.

Jesus Loves Me, This I Know!

Listen closely...

Pray for KK

Walking with Nurse Barbara post-surgery

KK began experiencing headaches, stiff neck, torticollis, lack of appetite, nausea over 9 weeks ago and double vision on April 4.  We went to the ER on April 8 where they discovered that these were all caused by a grade 4 glioblastoma multiforme tumor that KK has named “Charlie”. It was deep inside the left side of her brain and there was also a large amount of fluid trapped near it.

KK was scheduled for a tumor excision on April 10. A hard conversation we had in the wee hours of the morning before surgery will give you a glimpse into my daughter's heart: "If I leave this earth today, Jesus will be waiting to give me a hug; if I don't, you will give me a hug." The procedure began with a trip to the PACU at 10:15am and ended back in the PICU around 9pm. KK was, in the words of nurse Peter, “remarkable”. She had no trouble coming out of anesthesia. However, we had trouble keeping her pain levels down the first day after surgery because KK has such a high pain tolerance and wouldn’t tell us until it was a 5 or 7 out of 10 (which would be off the charts for me).

KK had a follow-up MRI on April 11 to see how much of “Charlie” remained and to find out if the fluid would be able to drain on its own. The results showed that about 2-3 cm of residue was left and the fluid was not draining. So, KK had a second surgery on April 14 to have a shunt placed to drain the fluid. KK had a very difficult time coming out of anesthesia this time (a different anesthesia was used that was supposed to have less side-effects, but instead she experienced severe nausea and vomitting). A follow-up CT scan and shunt imaging revealed that it was working properly and the fluid was draining.

Through it all, KK has been amazing. I am so proud of her! Everyone loved her; she was so endearing. As she was vomiting after the shunt surgery, she said to the nurse, “Thank you for taking care of me.” She was well spoken and asked relevant questions whenever anyone asked if we had questions. She understands very well all that has happened and what is ahead for us. KK tires easily right now. She has a walker to help her with balance while walking and is wearing an eye patch to help with double vision. She covers her stronger eye when she is sitting and her weaker eye when she is moving.

I have a friend that is a spinal surgeon that contacted the Chief of Neurosurgery Emeritus at Boston Children’s Hospital about KK’s case. The two of them then connected with the Director of Pediatric Neuro-Oncology at Dana Farber who wants to fast track us. Unfortunately, UMass did not get her scans and records uploaded in time for their weekly meeting where they review new cases on Thursday. So we will need to wait another week before the group will meet again. Waiting is not what anyone wants to do with KK’s situation. Pray that God will move mountains to somehow get her case “on the docket” sooner than next Thursday. I don’t know for sure what Dana Farber’s plan will be to eradicate what is left of “Charlie”, but it is most likely a combination of directed radiation and a chemo pill.

Please pray for God to bring complete healing to my little girl.

Finalizing the Adoption!

Kilaharee and I will officially adopt each other on Thursday, April 30th at 9:00am at Hampden Juvenile Court, 80 State Street, Springfield, MA 01102. Everyone is welcome! Just let me know if you're coming.

Parenting with Scripture

If you are a parent, you're going to want this book. It is an amazing tool. I discovered it a couple years ago and bought a case of them to give to families at church. Now I find myself needing it! It gives Scripture references for just about any topic that a child needs to learn about. It also includes discussion questions and application ideas. It is important to me that K.K. knows that my rules are not just her new mom's new rules, but these rules come from God. So, moms and dads, get your hands on a copy of Parenting with Scripture by Kara Durbin.

Ups and Downs and Curves

This has been a week with lots of ups and downs for K.K. -- bad days and good days learning how to read, telling lies and telling the truth,...

It has also been one huge learning curve for me -- mostly learning what K.K. has and has not been taught, then teaching after the fact what is and is not appropriate in many different situations.

I'm emotionally exhausted after this rollercoaster ride of a week...I can only imagine how K.K. is feeling.

Sick :(

I got a call from the school today. K.K. threw up. When I picked her up at school, she said she was feeling fine. However, she threw up again when we got home. The poor thing.

Small victories

I was told that K.K. had bathrooming issues. The family that cared for her before she came "home" would wake her up to go to the bathroom around 11:00. I have continued that pattern each night. We have also talked about how taking care of her body is more important than any toy, doll, show, book, etc.

Yesterday, I heard K.K. get up around 5am (much earlier than her norm). She went to the bathroom and then went back to bed. At breakfast, I told her how proud I was that she was taking care of her body like that.

Tonight, I was just getting ready to wake K.K. up for our nightly trip to the bathroom when she got up on her own!!! I was elated. K.K. just smiled. :)

First day of school

Kilaharee was so excited about starting school today. She was still awake when I checked on her last night shortly after 9:00 and she was up bright and early (TOO EARLY) this morning.

When I asked her how school was, she said, "School went fabulous. I didn't have to go to the principal's office. The best thing was the media center, but we didn't get to take out any books because Miss Lotane was going to be back in a 'jippy' (jiffy)." She said she didn't make any friends, but she remembers Gabrielle, Sonu (sp?), and Samantha. The principal said she was a little teary this morning, but she pulled it together. I asked K.K. about it and she said she wanted to be at home. I told her that I wasn't at home, that I was at work and she would have more fun at school. (Although, I must admit that I did have fun at work...it was nice to talk to and be around adults!)

Miss Lotane

K.K. and I met her teacher, Miss Lotane, today. She, too, is an adoptive mom -- and her daughter's nickname is K.K.! They have been together for 2 1/2 years. They also met one week and were together the next. It is so cool to see God's hand even in these details.

Love and Hurt

I was unpacking one of K.K.'s suitcases with her yesterday. We found a heart shaped box with some coins in it. One of her necklaces was inside as well. I just had the opportunity to look at it...on one side it says "Love", on the other "like you've never been hurt". Please pray with me that this statement will be true in her life.

Today's phone calls

My social worker called to tell me that my homestudy was approved by her supervisor and everything looks good.

Kilaharee's social worker called and arranged to visit us on Thursday morning to make sure we're all set and K.K. is settling in.

I called Kilaharee this evening to say goodnight. She said she is very excited about moving home!

Wow! I can hardly believe that I am bringing my daughter home tomorrow! God is so good!!!

Kilaharee :)

I had dinner with my daughter last night and tonight. I arrived at her daycamp at 4:00 yesterday. Her social worker met me there. We worked on a puzzle together. Before the puzzle was half done she was sitting on my lap doing it with me. It was precious. At dinner, I mentioned that there were a lot of people praying for her and talking to Jesus about her. She started singing "Jesus loves me" to her own little tune.

She is a sweet, endearing little girl. I can't wait for everyone to meet her. I bring her home next Wednesday!

Interesting facts:
* nickname - K.K.
* favorite colors - red, pink, purple
* wants to play soccer
* likes Disney princesses and Dora
* likes animals, broccoli, and shrimp (I'm in trouble - she tried to encourage me to eat some shrimp by saying "try it, you might like it")

Meetings

I met with the little girl's social worker tonight. I will be meeting her on Wednesday and Thursdsay afternoons. If all goes well, she will be with me on August 13th!