23 Aug

Lenox Slays the Leukemiasaurus: As it relates to her day-to-day “slaying” she is doing great – keeping up a great attitude and begrudgingly taking her medicine 4 times a
day. She takes some of it in orange juice which we do as a competition – Lenox and LaLa each have a tiny shot glass of OJ (Lenox’s with meds mixed in) and a tiny  straw. They race to see who can finish it first and the fun of the contest  seems to detract from the lousy taste. The other med we do as a swish and spit in the sink which she likes because what 3 year old doesn’t like to spit! She  is big into Legos now, particularly the Harry Potter Legos and often integrates  dinosaurs into her Harry Potter play. Her creativity is awesome.

General: Today  was a busy/sad/anxious day (for me and Liz) but went off as I would have hoped  for Lenox which was that she had a great day and was oblivious to all of the  tension of the day.

Sad: Today was the first day of school at St. George’s  Episcopal School, Lenox’s school, and it was hard that she didn’t get to go.  She has been talking about school and some of her friends and I think these  last few days of feeling better she would have been okay at school. They had an  annual blessing of the backpacks yesterday and I just didn’t have the heart to go  to that either. When we go back to school finally at the end of the  Consolidation Phase, which will hopefully be after Christmas, we will have to have Father Kevin bless her backpack then!
Busy/Anxious: Tomorrow is our first hospitalization of six –  so we had a lot to do today and I am pretty anxious about it because we don’t really know what to expect. We know what we are going in for – which is a spinal chemo under anesthesia followed by a monitored 24 hour drip of another strong chemo drug, followed by periodic (every 6 hours I think) servings of a third chemo  drug. I am not sure how Lenox will emotionally handle being back in the hospital  so we have talked about it a good bit today but I am most anxious about not  knowing how her little body is going to react to those tough drugs over such a  short time.

We mentioned our hospital visit to Lenox this morning and  she was upset about it but she was most distressed about not having to go to the treatment room (which she calls the ‘laying down’ room) which was where she had such a traumatic time trying to get an IV in her hand/arm last time. We told her she didn’t have to go in there again and she asked me to call the doctor to be sure. So I did a one-sided imaginary call with her doctor confirming that we don’t have to go to that room (we know for a fact that we won’t
have to so were comfortable with this ruse). Her smile was so big afterwards and ever since she has been pretty calm about going – talking about what to take with her, etc.

We go in at 7:30 tomorrow so will keep you all posted over the next week. We hope to be home by Friday. Once we know how this first one goes we hope to have a better sense of what the next 5 hospitalizations will be  like.

The Moms in the  Margins: Since I am prone to “tell all” and not withhold the underbelly of  this, there is something that has made this all even tougher for me. Some of  you may know this, but I have been struggling with clinical depression off and on for years, most markedly since having Lenox. The last six months before us learning of Lenox’s diagnosis I had really been struggling again and more recently had even been reducing my work hours to focus time on my all-around health and work on adjusting my medicines with my doctor to get it under  control. As you can imagine, the diagnosis for Lenox has just exacerbated it  and I am grateful for my doctor who is helping me.  I tell you this mostly to apologize for past and future interpersonal gaffes. I am able to be “on” for Lenox and have her  feel fairly unaffected by it, but I am usually done in by that and end up being  withdrawn and antisocial; so to all those wonderful people who bring us food, who we owe thank you notes to, etc. please forgive my perceived  loofness or lack of conversation.

Gratitudes and Shout-Outs:

  • Thanks so very, very much to Kristie and Diane and family for watching Jonah for us this hospital round! It’s such a relief to  have him taken care of. You guys rock!
  • Love to Lois from Lenox! Lenox told us yesterday  she wanted to bake a cake for Lois, which we did, and Lois has been hanging out  with us this evening having a great time with Lenox! Thanks for making this   evening a really fun and lively one for Lenox, and smoother for Liz and I. You  are the best!
  • Big thanks to Christina for letting Liz beat you  in darts and giving her a nice chill evening and for doing cool arts and crafts with Lenox. Good to see you!
  • Thanks so much to Becca and Laura for  coordinating the Care Calendar, which is an ongoing godsend, and to all you wonderful friends who have been bringing us such wonderful meals!

Love to All!

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