Day 1, Week 0

Although it's been 3 weeks since we discovered Eila's new tumor, today was week 0 of her new treatment plan.  It was a long and busy day at Doernbecher's, starting with a port placement surgery and ending with chemo.  We have been through all of this before, but each time is still a bit different.  This time was different because of the challenges that come with a third round of cancer and because Eila is now nearly 5 and can interact with us so much more than when we did this before.

Over the weekend Eila wanted to talk about her Monday appointments.  She really wants to understand what is going on.  She asks me daily, "Do you know anything new today, Mom?"  She asks questions about what we've been talking about with the doctors and what's going to happen next.  And she has opinions, like hoping her port will be in the same place as before and not getting chemo in her port on the first day because it needs time to rest.

It was interesting, and a bit amusing, to see the difference in her age during pre-op.  Eila interacted with the doctors that came in to explain the procedure.  She was given versed, which she has gotten before, to help relax her before surgery.  She told us that it tastes bad.  Then, about 20 minutes later, she was amazed by Joel's two mouths and kept asking how he got "2 mouth-es". 

From May/Jun2015

And she thought it was strange to have a "fat tongue".

From May/Jun2015

But she was calm and relaxed when we left her at the door to the OR.  Surgery took a little more than an hour, and the surgeon said everything went well.  Her third port-a-cath was placed on her right side instead of her left, but it looks like the 2 scars will meet in the middle.  She wasn't in recovery long before they came to get us, and she did pretty well waking up.  She wanted Mama and a blueberry muffin.  Luckily she had requested the muffin earlier in the morning, so we got her one at Starbucks as soon as she went into surgery (thank God for the Starbucks in the hospital lobby).

From May/Jun2015

After surgery she was sad but not hysterical.  She ate her muffin and asked to go home.  Eventually we moved to the pre-op space again and watch some cartoons for a distraction.  Meredith and Marie stopped by with lunch (thank you so much!) and more distractions for Eila.  It was much easier to gauge how Eila was recovering this time since she can explain herself so much more.  We eventually made our way up to the 10th floor for her chemo appointment.

With Eila's second tumor, she had surgery and chemo on the same day.  The chemo went well that day, but the de-access (taking the needle out of her port when chemo was finished) was incredibly traumatic and one of my biggest regrets.  So with this surgery we didn't access the port and planned to do chemo through an iv.  Her surgical iv wasn't giving blood, so Eila had to get a second iv placed.  There were a few tears but overall it went well, and she got her wish (and mine) that her port wasn't used today.

From May/Jun2015

She got all 3 drugs today: vincristine, actinomycin D, and doxorubicin (VAD).  It took awhile, but snacking and watching Netflix on the iPad helped to pass the time.  There were no issues and we were all happy when it was finally time to go home.  She's never gotten all 3 drugs at once before, so we'll see what the week has in store for us.  She goes back next Monday for her second chemo treatment.

Thank you all so much for your thoughts, prayers, messages, text, food, and kindness.  We are truly blessed to have such a supportive community around us, and it means so much to know that there are people near and far cheer Eila on as she fights through this again.