Happy Sunday! We are officially half way through radiation treatment! It has been an eventful week! Our car arrived and we received the carseat that St. Jude ordered for us- so we are officially a mobile family! The week marks our second week as outpatient. It is hard to believe we have been here a month already, time seems so fleeting and irrelevant to us. I am often unsure of the day or date..... St Judes has some incredible activities for the kids, parents, and siblings. Last week some well known (well known to many people but not to us!) country music songwriters came and performed for the kids. It was beautiful- the guy who wrote Jesus Take the Wheel Brett James, and a couple others were there. The writer of Martina McBrides In my daughters eyes https://youtube/watch?v=eLS0Y40WwlA sang that song and both Keren and I were an emotional wreck. Santa made an appearance and all the kids received gifts. Jameson did an amazing thing- he gave the gift he received back to Child Life and asked Ashley to give it to a boy she thought needed it more than he did. The corporate support for this hospital is amazing- everyday there are companies that are funding and hosting events for the kids, in addition to keeping the hospital operating. As most of you saw- we all have new haircuts! Except Kylie who was vocal to let us know that no one was going to touch her hair. We expected this would come, but it happened sooner than we expected. The high dose radiation did a number on Kiaras hair. We had it in four braids so it actually masked how much had fallen out. When team had to re-fit her for her radiation mask the hair was causing a bulge in the mask, so they asked if they could cut it. When they did, we quickly realized much had fallen out already and decided to do what we could to make it an easy transition for Kiara. We cut it in front of her with some hospital scissors and my beard and mustache trimmer. We were making jokes about copying both Kerens and my Dads hairstyles and Kiara was smiling during our home barber escapades. Not that I was surprised but Keren looks amazing- and Jameson looks older. Thank you all for the kind comments on the photos, but many of you mentioned Keren and Jameson looking great.....but I was also in the picture and I received very few Hot, Beautiful, Gorgeous comments.... The thing we all quickly realized is how much colder it is down here with no hair. Kiara is making progress- in speech therapy she is swallowing some smalls spoonfuls of thickened juice with little trouble. In OT and PT she is working on her muscles to hold her head up and reach and hold things with her hands. I have to really focus on the baby steps of progress- it can seem so painfully slow at times that it gets a little disheartening. She is fully aware of her surroundings and her personality comes out in moments that warm our heart. Farts- and jokes about farts still bring laughs and smiles. We made our first attempt at a family outing last night- we were invited to a Christmas Party by the personal trainer of the couple who own the condo we are staying at. It was a wake up call for sure- when we arrived it was a party that normally we would have loved to be at- piñata, kids, kids, and more kids! Santa was handing out candy canes- and a bonfire for roasting marshmallows....We got there and realized our mistake- too many people, smoke, and not a good environment for Kiara to be at. The radiation has zapped her platelet and white blood cell count- not in the danger zones, but we realized how we have to be so cautious of the environments we put her in. We stayed for about 10 minutes before we had to leave. One of the children put some candy on Kiaras lap and she moved her hand over it and smiled. She is a long way from any candy eating but to see her personality coming out was very sweet and warmed our hearts. Christmas is approaching and we wanted to say thank you to those who have sent gifts for the kids. We have done no shopping, and honestly I dont know if we will or not. I ride the fence of keeping some normalcy for Jameson and Kylie and just having gratitude for our family being together and praying for healing for Kiara. It is sometimes easy to forget to see things from their perspective. I pray for wisdom, and honestly feel like I come up so short in leading well. It is amazing how the feelings of inadequacy and insecurity can quickly overwhelm me in this. There are moments where I feel so faith filled and strong, and moments when it all comes quickly crashing down. I feel like The Lord is working so many broken mindsets, and strongholds that have had a grip on me for sometime through this....while its reassuring it is not comfortable or easy. When stress overcomes me, selfishness comes like a wave.....I am thankful for a Saviour that has grace that is sufficient...and a wife that forgives when my pride and ego rise up. Kiara received a Hickman line on Thursday. This will be permanent through her Chemo treatments. We chose the Hickman over the port once we saw the size of the needle it takes to access the port. It will take a little extra care on our part but Kiara wont have to get needle pokes every week. This caused some pain but brought some joy- In the middle of the night after her line was placed Kiara was crying and screaming out in pain- during this she screamed Mom Dad and owwwww - not in perfect pronunciation, but clear enough to know they were words and not cries. These are the first words since the morning of November 4th when she had surgery. We are believing she will begin speaking any day now. We praise God for moments like this- where while it seems slow it is progress and warms our hearts. We want to say thank you to those of you who have initiated fundraisers on Kiaras behalf. We feel so blessed by the time, finances, and love shown by each of you. It is a humbling place to be in...words are inadequate for the gratitude we have. #kiarawarriorprincess
Posted on: Sun, 21 Dec 2014 17:22:30 +0000
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