Update and Thanksgiving

25 Nov

Update on Lenox and the Leukemiasaurus:
Last week was a bit tough for several reasons – first, Lenox started getting her first mouth sores. We have been hoping that this might skip Lenox as they are quite painful, but last Friday night she started telling us how much her boo-boos hurt in her mouth. We checked it out with a mini- flashlight and sure enough she had several sores. It is actually surprising that she did not get them sooner as they seem to be a prevalent side effect for high dose methotrexate. We got her on a”magic” mouthwash, which has Benadryl, lidocaine and Maalox and the few times she used it seemed to help. Because of the mouth sores, we couldn’t keep doing her evening chemo meds with OJ so had to find an alternate medium. OMG, this one small change wreaked havoc. Lenox was so adamantly against doing any other drink that for the last 3 to 4 nights giving meds has gone back to a 2 hour crying, pleading, cajoling UTTERLY DRAINING experience. It brought Lenox and I both to tears.

The other tough part was her clinic visit this week. What should have been a fairly routine visit was very hard because Lenox really fought getting her port accessed, screaming, gasping, crying and pleading “mommy stop, mommy noooo”. And then after she was accessed, to exacerbate things, she flailed so hard she yanked the access line right out. Meaning we had to reaccess her. I was in tears for this too – trying hard to not let Lenox see me. Once we finally had her re- accessed we struggled a bit with an allergic (or at least dramatic 🙂 ) reaction to a med she received.
Overall, Our little turkey is a bit thinner – she seems to be losing about a half pound to a pound a week over the last few weeks, but she still has great energy and seems to be feeling good! Her cousins, Grace and Michaela, came and stayed with us from Saturday to today so were a wonderful blessing of companionship and help for all 3 of us, especially for keeping Lenox’s mind off the mouth sores.

Boston Thanksgiving: In spite of what it might seem from the update above and our rough week, Liz and I are more aware and thankful than ever for so many things…

For having had the most amazing blessing of a daughter born 3 1/2 years ago and having that time to watch her become herself and be her world to her;

For every kiss, giggle, tear, boo-boo, letter learned, tantrum thrown, and tenderness she has shown;

For having the “good” leukemia, for not having terrible side effects to chemo, and for mostly having had great blood counts through her treatment;

For Lenox’s bravery and courage and fortitude and for her ability to end a lousy day with the words “I am happy Mommy and LaLa.”

For the wonderful doctors, nurses, and medical team right here in our neighborhood who make having a cancer kid so much more bearable and understandable;

For having good insurance, wonderful employers, great friends and amazing supportive neighbors;

For Lenox having such a warm and embracing school community;

For our steadfast families who have laughed and cried with us through this and whose support we couldn’t get through this without;

For each other as partners to get through the tough days and celebrate the good days;

And most importantly we are thankful for having the confidence and faith it takes for us to believe without a doubt that Lenox will survive this and thrive!

Happy Thanksgiving Everyone!


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