Update – 23 Feb 14

Update – 23 Feb 14

Esme is wrapping up another chemo admission like a champ! We will go home tonight as long as her methotrexate level is low enough. We got here Wednesday, spent the morning in an orthopedic office discussing “pancakes” (our family code word for surgery because Esme doesn’t like the sound of the word surgery!), and then it was off to Solid Tumor Clinic to check her labs so she could be admitted for her methotrexate.

She only vomited a few times right after the infusion – and sadly lost some really yummy salmon from Marlows to the barf bucket! ūüôĀ She’s really not much of an eater during chemo, but Mamo and Opa came to the rescue MANY times, fulfilling all of Esme’s requests for what she did want. It’s good to have grandparents who love you! ūüôā

Esme also had a repeat echocardiogram during this admission to see how her heart was holding up to the doxorubicin. The echo showed no significant changes from her baseline echo. This is good news, but we will continue to keep a close eye on this. It really worries us because we have read about a couple other kids who have made it through chemo and surgery only to end up with congestive heart failure.

Egleston has it’s own radio studio and had some special visitors this week – Fifth Harmony from the X Factor. Esme got to meet them and get autographs! It was nice of them to stop by and see the kids.

She surprised me this admission by showing me how much she REALLY hates getting her central line flushed. She chose to have her blood drawn from her arm daily for her methotrexate level checks instead of being flushed to have the blood taken from her line without any extra needle sticks! She doesn’t cry or flinch and truly prefers having a needle stick to the vomit inducing saline flush smell/taste. Wow!

It seems that Esme’s worst side effect from the methotrexate is skin blistering and then sloughing from her feet and hands. The first couple of rounds she complained of a little pain, developed some redness on the bottom of her toes, heels, and on the tips of her fingers. These blistered up and peeled off when we got home but wasn’t too bad. This time, she is really hurting. Her feet and hands look terrible! She can’t walk which makes the crazy number of bathroom trips because of the high rate of IV fluids lots of fun… And, she can’t write or draw to entertain herself because it hurts to hold the pencil or crayons… Thank goodness her fingertips are good – I’d hate to interfere with her texting and social life! ūüôā

Surprisingly, through all of this, Esme smiles at her nurses and her visitors and keeps her upbeat attitude! She is truly inspiring.

25 Jan 14 – Update

25 Jan 14 – Update

We have to celebrate and share our two lovely days at home with you! ¬†First, we got to take part in the amazing show of selflessness and support for Esme at Westwood Elementary¬†on Wednesday¬†with “Boys Buzzing for Esme.” ¬†It was fun and silly and deeply touching. ¬†Bless those little men! ¬†Esme was also able to take part in another newspaper interview that same day with her winning Challenge stock market team. ¬†She was over the moon! ¬†And, there was time with family and friends and pets and snuggling in our own beds… ¬†Heaven! ¬†Ty and I even got a date with Maslin to give her a little special time of her own with both of us. ¬†My love cup is filled back up to begin the next admission!
So, here we are again. ¬†We had a long day in clinic yesterday. ¬†Poor Esme started to get sick after her port was accessed and had to have a little IV ativan. ¬†I really think part of that was the worry over the upcoming chemo – she really didn’t want to come this time… ¬†After the ativan, she wasn’t nauseated any more and relaxed to the point that she started dreaming of the national holiday “Esme Day” for when she is cancer-free and everyone celebrates! ¬†She designed and drew her outfit complete with several boot choices and a crown-like hat that shoots out bubbles, streamers, and confetti! ¬†Now THAT’S our girl!
We had to wait on patients being discharged to get a room, and finally got up to our room about 4pm.  Ty and I are trying it a little differently this weekend.  He came to clinic with us but went home to stay with Maslin after dragging our bags in for me.  He is bringing Maslin down to see her sister on Sunday (in the cafeteria because she is too young to come up to the cancer floor during flu season), and we are trading places.  He is going to stay with Esme while I take Maslin home with me.  This gives sweet Mamo a breather and lets Maslin have some individual time with Mom and Dad.
Fuzzy

Fuzzy

Smile!

Smile!

Esme did great last night! ¬†Her Mamo and Opa brought her all the strange things she requested to nibble on and visited with her. ¬†Then at about8:40pm, she asked for the yellow wash basin. ¬†I just figured the vomiting was about to begin… ¬†But, instead, she simply placed it on her head and fell fast asleep. ¬†Funny little child! ¬†Aside from our every two hour bathroom trips because of the fast flowing IV fluids, she had a great night!
Goof!

Goof!

Lights out...

Lights out…

The same cannot be said for little Maslin… ¬†She was playing with some friends and got bitten on the cheek by our dear friends’ dog – a complete accident. ¬†Ty called me and asked where the neosporin was. ¬†Nice way to break it to me, dear! ¬†After my initial freak-out and an iPhone picture Dr. Mom evaluation, I sent them to my hospital for some tender, loving care from my awesome friend Josh Slatky who fixed her right up. ¬†Everything is going to be fine, but sometimes I want to wave my white flag and surrender…
This morning, Esme vomited after trying to take her zofran for nausea. ¬†Ironic! ¬†She has now had some IV zofran and is face timing her friend and playing Animal Jam. ¬†Here’s to a pleasant, uneventful day in captivity!
7 Jan 14 – Feeling better

7 Jan 14 – Feeling better

Feeling better!

Feeling better!

A new day and a new Esme!  After a unit of blood, two doses of IV antibiotics, and some sleep, our girl is back!  She was doing a little dance at the sink brushing her teeth this morning and is cracking silly jokes again in typical Esme-style!  Because she feels better, we feel better.

We are likely in the hospital for a day or two more to make sure her counts are coming up and she doesn’t run a fever again. ¬†Egleston and all the people who work here are wonderful! ¬†No one wants to be here, but they couldn’t make it more pleasant and comfortable since we do have to be here.

Now if only Four Cheese Cheez-Its and root beer were a nutritionally sound diet, Esme would be all set…

-Jackie