One!

Happy Birthday Little Spud!

Happy New Year!

The limo is here!  We're going to Disney!

A winter break like no other!  It has been a whirlwind of activity, travel, illness, cheer, family, and fun around here since before Christmas.  I guess it is back to regularly scheduled programming now.

The Orlando trip was a blast!  More details about the trip later, but we had a great, great time.  The resort, Give Kids the World Village was amazing, and probably the best part of the trip.  Our kids had never seen anything like DisneyWorld before, so it was a lot to take in and discover.  I am still digesting it all!

Mollie spent a few days under the weather.  She was sick for a day in Orlando and following Christmas she just seemed extremely tired and pale.   I took her in to our pediatrician for counts.  Matt and I both were worried; we thought the other shoe was about to drop.  Fortunately, her counts were fine!


Christmas Eve was a little chaotic as we were all so tired and had little time to prepare (and Liam threw up on the flight home from Orlando).  But Christmas day was lovely.  Matt's parents and brother were staying with us and we spent a leisurely morning opening gifts.   Then we spent the afternoon trying to find a restaurant for Christmas dinner (the search was much harder than anticipated).  We ended up at a small farm-to-table restaurant in a historic hotel in uptown and it was fantastic!  We had the entire place to ourselves and the real treat was that it started snowing!

The week after Christmas is always a favorite of mine- probably the most calm, relaxing days of the whole year.  And of course, my birthday falls during that week.  So maybe that's why I like it so much.  We spent time around our house and then Matt's parents took Mollie and Lucy to Snow Hill (his grandparents' farm in South Carolina) and that gave us a little respite.  Unfortunately, I got the stomach bug so instead of crossing items off my "to do" list, I was worshiping the porcelain goddess.

We joined them is South Carolina to ring in the new year.  Now we are all recovering... and Liam took his first steps today!

I hope everyone had a lovely holiday!

Signing off for Christmas

With Christmas and Mollie's Wish trip on the agenda, I am going to take a short blog break.  I promise I'll be back after Christmas with some photos of all the festivities. 

We got some bad news today about our house in Augusta- a pipe burst and there is major water damage.  I really struggled to get through today, wondering if this was my straw (the straw that broke the camel's back).  In my mind, I know things could be a lot worse (I'm thinking of families getting a devastating diagnosis or losing a precious child).  This doesn't compare, but this still feels pretty bad.  Thanks to my awesome husband for driving down there to see the damage in person and talking me through a big cry fest (you too, mom). 

The kids are bouncing off the walls with excitement, so for now, I won't worry about money or insurance, and I vow to just be present and enjoy them. 

We hope everyone enjoys the winter holidays, however you celebrate!

Full Weekend

Mollie stayed home from school on Friday.  She just seemed worn out and in need of some extra rest.  So she slept in and spent some time watching movies and just being indoors and quiet.    She still almost fell asleep at the dinner table.

Fortunately, she perked up Saturday morning and we went downtown to see Matt finish his first ever marathon!  It was a beautiful (cold) day. We had a delicious lunch afterward and I got my last bit of Christmas shopping done while Matt took the girls home. 

We ended the day by watching the DVD that Camp Rainbow sent from this year's camp.  It was fun trying to spot Mollie and see some of the activities she did at camp (like catching huge fish with Dr. Vega).

Today we attended a Christmas party for CampCARE (similar to Camp Rainbow but here in NC).  Mollie and Lucy got to confer with Santa and get their photos taken (I will post when I get it).  And then Lisa, our Make-a-wish volunteer, came by with a light-up princess cake and all of our info for the DisneyWorld trip!  So we had cake for dinner and pasta and salad for dessert!

Clinic Update

Mollie's oncology clinic visit was quick and almost painless. She was so pleased that Jackie just did a finger stick to get blood for counts.  She had second thoughts though after getting 20 drops of blood squeezed out of her finger.  Dr. J thinks she is looking good.  Perhaps she is getting a cold or virus because she looks a little "washed out" and has a palpable lymph node.  She does have a bit of a runny nose- hopefully it won't turn into anything.  Her counts are all within expected ranges:

  Hgb       12.5
WBC      4.6
ANC       2400
   Plt        174

She goes back in a month for regular follow up and will have an echo at that time to monitor her heart function.  She will need monitoring (probably every 3 years) for the rest of her life because she received cyclophosphamide (Cytoxan, an anthracycline) in 2008 during Delayed Intensification.  This drug can have cardio-toxic effects; the biggest concern with her heart would be during pregnancy because of increased cardiac demand. So we will just keep on top of the monitoring and make sure she is aware of the issue.

After her oncology appointment, we headed to Augusta for her surgery follow-up.  We had a long, mostly sleepless night in a local hotel, followed by a rough morning (teething baby & cranky 2-year old).  I just prayed that the appointment would go well... and it did!  Dr. Howell (or as Lucy says, Dr. Owl) was quite proud of his work, noting how Mollie's earrings looked perfectly even and her scar was quite nice.  He put new steri-strips over the scar; when they fall off, she's good to go.  And he didn't bill our insurance for the earrings- I don't want to know how much he would charge for that!  Quite a gift from Dr. Howell!

After that appointment, we headed over to MCG oncology clinic to visit with the staff.  We saw Tracey, Nikki, Beth, Pam, and Kate.  I was a bit emotional- I miss the familiarity of that clinic and the bonds we've made with all of Mollie's caregivers!  After a few minutes of visiting, Mollie started to get irritated and teary and wanted to leave right away.  I sensed there was something she wanted to tell me in private, so we quickly said our good-byes and walked down the hall.  When prodded, Mollie told me she was sad because she didn't get to see Ms. Kym.  I said, "Let's walk back and ask Ms.  Tracey if she knows where Kym is."  So we did, but she had not seen her.  Just as we were turning around to leave, Ms. Kym came walking down the hall!  It was a little miracle that lifted Mollie's spirit!  Kym gave the girls hugs, some winter craft projects, and a stealth mission for DisneyWorld.

After that, we stopped by my old lab to pick up some things from my desk (another emotional roller coaster) and then headed back home.  Finally!

Mollie seems worn out (she had Spanish club after school and then her class holiday performance tonight) so she might be staying home tomorrow to rest and recover a bit.  Don't want to overdo it!

On the agenda

Mollie loved this little, warm bookshop in Blowing Rock, NC

This week Mollie has TWO clinic appointments- her regular oncology follow up (for counts) at Levine and then her surgery follow up in Augusta.

She's growing into quite a young lady!

We got a bonus doctor visit yesterday; Lucy was begrudgingly holding my hand as we were walking through the store, angry because I wouldn't buy her a chocolate milk.  She did that "thing" that toddlers do- just kind of buckled her knees- and I jerked up on her arm so she wouldn't end up on the floor.  As I did that, I felt something give.  Lucy seemed fine for a few minutes and then started crying.  She was in real pain, holding her arm, and wouldn't use it.  Lucy has a high tolerance for pain, so off to the doctor we went to make sure it wasn't broken. They did a couple of X-rays and determined it was "probably" not broken, but Dr. T was concerned enough that he set us up to see the orthopedist today.  We think she may have had a dislocation at her elbow that was reduced when the X-ray techs manipulated her arm around.  Have I mentioned how great it is to have our doctor around the corner from our house?  We can walk there in 5 minutes!  And they have a lab and x-ray on site.  Since she's feeling better and using the arm, we don't have to follow- up.... woo hoo!

Liam, participating in his favorite activity:  eating hamburgers!

Story time with grandma (Momo), Blowing Rock, NC

Playing in the leaves at Reedy Creek Park

Speaking of places we can walk to in 5 minutes, we got our Christmas tree on Saturday.  There is a little tree lot set up at the park area behind our house, so we walked over, picked one out, and Matt carried it home!  We put it up Saturday evening and it looks great!  That might be the earliest we've ever had a tree.  Usually it is Dec 20 before we start thinking about it... and then we leave it up forever.  It is cold here, so we are spending a lot of time inside enjoying the tree!

A Good Cry

Just a few hours after I finished uploading photos for my post yesterday, Mollie arrived home from school.  I suggested we take her bandages off so I could check her incision (her follow up appointment is not until next week).  She was very reticent - I thought she was worried about the pain from the adhesive.  I got out the detachol (brilliant solvent for removing adhesive bandages) and she let me put it on the tegaderm (the outer bandage).  It peeled off easily along with one of the steri-stips (inner bandages) from the smaller incision.  The smaller scar looked great and I walked her into the bathroom to show her in the mirror.  The larger incision was still covered, but Mollie would barely look.  She just hung her head and started sobbing.

I held her until she calmed down and asked her what was wrong.  "Why did this happen to me?  Why did I have to have leukemia, surgery, and all the medicine and hospitals and blood draws?"  It is certainly not the first time she, or any of us, have asked this question.  My reply, as always, was to tell her that I wished it had never happened to her, that we are doing everything possible to make sure it doesn't come back, and to reassure her that it was not her fault.  We talked a little bit about biology, God, and doctors.

She calmed down.  She asked me to cover the incision with a band aid.  That did the trick.

Later, she took a much-needed shower, but we left the steri strips and band aid in place.

I think she needed a good cry.    She feels much better about everything today.  A good cry and a hot shower work wonders.