Great Clinic Visit

4 Aug

Lenox Slays the Leukemiasaurus: Great clinic visit today! Lenox was a champ about putting on the numbing cream ahead of time (which goes on the skin that is over where the port is). No drama in the car on the way either. When we got there, no tears at all. So far so good…

Then she did all her vitals without grimacing too much. She is at Day 22, so has less than a week left of these steroids and they were very upbeat and fun about almost being done. Lenox was actually cordial to the social worker who meets with us each time and actually giggled and smiled with the RN. We see the same RN, Karen, every time and she is awesome. This time, Lenox helped remove the cover over the cream, wiped off the cream herself, and only cried for a super quick second while they accessed her port. Karen had Lenox help her with putting the sterile “window” (a clear bandage that goes over the port while we e in the office) and pinch off the tube access. Very very so far, so good…

Then, brilliant Karen had Lenox help her with everything! Lenox pushed her own saline and helped pull her own blood from her port. She then helped as they prepped for the chemo injection, did the saline push afterwards and she then pushed her own heparin lock. Lenox then voluntarily and without tears (this is big!) took off the window on her own. She usually totally breaks down at that part so for her to do it herself with no tears was awesome! Her participating and feeling in control – and included – made a big difference!

Through all this she tightly held on to Rompzy – this is a new and now beloved stuffed dinosaur that came all the way from San Francisco the other day in the mail from one of her good friends. Lenox has not usually been very attached to specific stuffed animals but this one has her hooked – thank you Flora, Adele, Leo, Hazel, Tal and Jenna for her new “security dino (blanket).”

Lenox snacking at the dr. office.

Best part of the visit though is…. Drum roll…. That her counts were WAY UP! Her white blood cell count tripled, which indicates her ability to fight infection and is now falling totally in the “normal healthy kid range” for white blood cells. Her platelets almost quadrupled and since that is correlated to her blood’s ability to clot that is also a nice sigh of relief. The big change is the ANC – the number I mentioned in an earlier post which is the real overall picture of her ability to fight infection and it dictates how vigilant we must be and whether we can go out and about. AND it went from 200 to 4,880! The 200 had been very low but now because of the steroids amping up her body, her ability to “fight” this week is within a totally normal range! OMG we can go places! She can play with her pals even if they maybe have a little runny nose from allergies! And maybe just maybe we can go to the pool!! These are changes the clinic was hoping to see by this week, because of the steroids, but for us seems like a totally unexpected fabulous treat! Now, she may not feel totally up to all these new opportunities but its soooo nice that if she wants to she can, and we don’t have to say no. Of note is that her hemoglobin stayed about the same, which is correlated with fatigue and breathlessness, and makes sense considering she has been so lethargic and short of breath.

To celebrate Lenox wanted to go to Target for a few things and to get popcorn. We also built a Lego Hagrid’s Hut tonight!

Lenox and some of her faves: LaLa, soup and pasta! (Liz’s new head!)

At Target eating popcorn. (buggy scoured with Clorox wipes J)

The Moms (In the Margins): So for those who may not have seen it on Facebook Liz shaved her head yesterday and not surprisingly, has a super beautiful head and looks really GREAT! As though she needed to be any cockier J! Lenox’s response was a smile, touched it, giggled and then said “put your hat back on LaLa”. But now she wants Liz to tattoo her head! (Maybe henna?). The change now has her saying my hair should stay exactly as is – “no changes at all mom”.

To Come: Other good news today too is that they told us that during the week between the Day 29 test (next Tuesday) and the following week, she won’t have steroids or chemo! So a week “break” before they roll into the next big phase. Nice.

Gratitude’s and Shout Outs To:

  • Karen: the super fab RN who may have really helped Lenox realize that clinic visits will not always be horrible!
  • Del (aka Nana), for being the super most supportive mom/grandma of her bald-headed daughter! We love you!
  • Sarah A., your chicken was awesome!!
  • Homer, you totally rock for installing our locks today!!
  • Deb Barrera, you are an awesome pal for shaving your head too with Liz!
  • Lois, for our first chill kicked back evening with a beer since this started!!
  • And to soooo many of you who have stepped up, helped out, offered your time, and posted great encouraging comments back to us. THANK YOU!
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