What a week…. this week was met by many milestones… ALEX IS 9, CHARLOTTE IS 7, and our dear friend Alexa had her 1st Angel Day, as her mother so poignantly put it.
June 23rd not only marks Alex’s birthday, it marks 3 years since he was released from MIBG isolation at the University of Michigan Cancer Center – July 4th marks three years since his admission for his stem cell transplant. So hard to believe that we would be here today. I did not look at last year’s post…. But I am sure it will ring strikingly similar – we did not think we would get this one. Alex’s birthday wish… a camp out in the back yard, BUT, temperatures of 100+ degrees prompted a request for a fall make-up date. Instead, Alex woke with a kitchen full of decorations, Bagels (he woke up early and mom was on delivery), homemade lemon cupcakes for camp, and a trip to the pool. The Kids’ vote for dinner – teppanyaki – David and continue to be stumped at how they can be still mesmerized by the flaming volcano, the obligatory…choo choo and shrimp tails in the guy’s hat. Yoku Dekimashita! Today Alex will be heading to an indoor gaming place to rough dad up via video games – at least that is Alex’s intention. (Alex and his pal Will have been attempting to lull mom and Charlotte into a game of Nintendo DS, they sync their games and pretty much annihilate us…. we no longer play… in comes Dad… Touché little soldiers, years of killing “Uncle Bill” at Camp Crossbow (David’s parent’s house) has yielded a formidable enemy.
I also went to Children’s – 10th floor to help the Princess Alexa Foundation get ready for the Launch Party later in the week. I ran into Dr. Klesse…. Neither of us could recall how long it had been since we were inpatient in the unit… TWILIGHT ZONE… again reminded that we walk in two worlds…. When did it really strike me?.... when I ran down to the vending machine to get a soda… the smell… the smell of alcohol wipes and hospital…. I never liked hospitals… funny, married to a guy that spends his life in one… still don’t like them… Funny how a smell can set it off… that lump in your throat, that reality check.... We don’t want to go back… life is good… on the outside……
The kids are having a great summer – again, it is a Summer of Playmobile during the hot Texas afternoons, a few cat fights, etc…. We are looking forward to that long road trip to Northern Michigan (without the cat fights)…. We are going to Leland again, same humble little cottages, innocent fun of craw-daddies, skipping stones, sail school, sand castles, and cool nights, marshmallows, cherry pits, hot dogs, and kayaking… life is good… on the outside…..
Alex is officially off chemo – we are getting him ready for his next course of treatment, ABT-751. We will go to Houston upon our return from Michigan for scans and an initial dose. We will be subsequently treated at Children’s in Dallas, under the direction of our Houston doctor. Children’s will be welcoming a new NB physician this summer from Houston, so that will be great – long overdue but a great addition for the community. They are also welcoming a new Bone Marrow Transplant physician – again, overdue but a great add. Children’s chose well on both fronts and we are happy the community will get the skillset it deserves.
Wednesday was Charlotte’s 7th birthday – cupcakes for camp, morning decorations, Yummy Donuts and happy birthday’s from her swim team friends… it was a good day…. For her Birthday, Charlotte and three friends celebrated a pizza making party and requested that donations be made to the Princess Alexa Foundation. We are proud of the girls and their generosity. The girls raised over $350.00 to donate to the foundation…..
Thursday was Alexa’s 1st Angel Day… and the launch of the dress-up closets at Children’s Medical Center Dallas. The kids joined in the fun – it was touching to watch Sophie watch the video of the kids’ in their dress-up clothes… at times looking at Alexa with smiles and giggles and other times, you can see she was sad to lose a friend. Alex was within a few feet of Zack throughout the day… kind of like mini-me…. The closets were unveiled, Cinderella, Snow White, the Incredibles, Batman and Slappy were there to entertain the kids - was a great day. David and I continue to be inspired by Crys and Zack – Alexa continues to touch us through them! www.princessalexafoundation.org
We continue to keep up with our younger friends, Connor Cruse, Carson Leslie, Sam Hutchison and ask that you say special prayers for them…. Additionally, Annie, Polly, Judy, Annette, Cindy… all battling cancer. Please keep them in your prayers.
Life is good on the outside…. Breath deeply… no alcohol wipes or hospital smells, and when you do this, give thanks for the health you have and ask that God help our friends and yours achieve the healing they desire.
Peace and hope!
