Hello patient Friends!
It’s been a whirlwind lately, and I feel like a Tazmanian devil! – a whirling dervish of new life is unfolding with camps, activities, work, change, new med schedules, work, friends, auditions, callbacks, tae Kwon do, dance class and did I mention work? Whew! Notice housework was NOT included in that list…
We officially started Maintenance Therapy 2 weeks ago. After the spinal tap and IV chemo in clinic, Lulu was quite sick for a few days. We thought uh-oh, is this what maintenance is going to be like? She was taking about 16 pills/day including steroids, daily chemo, and counteractive drugs. A couple of days in, she developed a fairly sever rash on both of her arms. We called the H.O.T. unit to see if we’d have to make a trip to the dreaded emergency room. They had us wait it out, to see if it worsened or she developed a fever. NOPE! No trip in! YAY! – and that seemed to set the tone for the remainder of the two weeks.
Each day, Lulu has been getting stronger, happier and busier. She’s been going to a 2.5 hour daycare/camp and is in her glory! We’ve even had a couple of play dates and each day, her excitement seems to grow exponentially. At bedtime, she looks forward to the next day so much that she sets all her clothes out neatly, and has me write up a list of all the things we are going to do the next day. Here is an example:
-Wake up
-Get dressed
-Eat
-Make a few changes in the bathroom (my little artiste, she decorates the bathroom with her little trinkets and moves the soap dish over)
-Go to the park
-Get ice cream
-Cuggle with Mommy (Cuggle is my kids’ family word for cuddle-snuggle)
-Make art
-Watch a show
-Play with my brother
It absolutely brings tears to our eyes to see her having so much joy! We’re doing our best to wean her off of as many drugs as possible, while still keeping her comfortable. ‘Sybil’ is still rearing her ugly head here or there, but Lulu is winning out and trying her best to cast out that evil hold steroids can have over. The more distraction and engagement she has, the happier she is, and she asks every day if she can go back to school yet. I just can’t wait until she goes back to see her teachers and friends.
Max has been having an exciting summer, and just auditioned for the professional children’s theater here. Over 600 kids audition at the generals. He did such a good job that he was called back on the spot, even though the callbacks aren’t until September! He had his first callback yesterday, and has another today for a different show! I’ve NEVER seen him so happy and excited about anything … not even football. It was so cute, and former-performer mama is proud as a peacock. We’ve had so much fun preparing his monologues and audition material, what a great bonding thing for us to do together.
For Jimmy and I, life on Planet Multi-Task has been interesting. He’s been traveling and working and working and overworking, in desperate need of a vacation. I’ve been carting the kids around, and working a lot more in preparation for the launch of the E-com startup I’ve been working on. I’m still enjoying it, despite the revved-up pace. If being busy is the biggest problem I have, then life is grand. Now, if only I could get a personal assistant who also did laundry and cooked…
Great news on our friends too: BO has made an unbelievable turn-around. He fought his way out of ICU and back to the H.O.T. unit. He’s been doing everything asked of him and more, and the doctors are blown away by his progress. His strength is nothing short of Olympic, and all these kids deserve a gold medal! Kate too, has made great strides and is also in maintenance, and just celebrated her 4th birthday – at home! Kaylee is healing well from her burns, and was discharged shortly after admission. All those thoughts, prayers and good Juju are really working friends!
We also found out Lulu qualified for Make-a-Wish! Now, the wish-granters begin finding out what her wish will be. So far, she’s been telling us she wants to see the rainbows in Hawaii. I guess that could work … J
With that, I’ll leave you with Lulu’s quote of the week:
“Love is the most important thing, because it brings power to other people”.
Indeed.
With love and gratitude,
a.l.l. of us
p.s. A very special thank you to my BFF Jen and her girls walking in Relay For Life on Lulu’s behalf. Here’s a video link of their efforts: http://www.youtube.com/watch?v=wqjaDYJH-HY
