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.

Thankful!

I hope everyone had a lovely Thanksgiving and holiday weekend!  We sure had a lot to be thankful for this year!

As we noted briefly, Mollie's surgery on Nov. 17th was a success!

Arriving at pre-op clinic @ MCG

We arrived at MCG a little after 10 and Mollie had been NPO (no food) since dinner the previous evening.  We met with Dr. Howell (the surgeon) and anaesthesia in the pre-op clinic.  We didn't really know what to expect in terms of recovery time, whether she would be admitted, etc.  As the surgeon explained, removing the port is a lot easier than inserting it, but there are still complications that can arise.  The port itself can adhere to the heart wall, it can fracture, or just be difficult to remove.  The outcomes are generally positive, but could result in a permanent piece of plastic left in the chest or could require the assistance of a pediatric cardiologist in a second surgery.  Dr. Howell didn't seem too concerned, commenting that Mollie wouldn't know the difference; she would just wake up with her ears pierced!  But he also seemed determined to get it out in one piece (and was visibly irritated that it didn't always happen that way).   My favorite part of that whole conversation was when Dr. H whipped out the pen to mark the spot he was going to pierce Mollie's ears!

Ears marked and ready to go.

So, after picking out a toy from the dino-store (just for kids undergoing procedures), Mollie got a dose of Versed and was wheeled into the OR.  We grabbed lunch and waited.  The surgery lasted about 3 hours, including prep and recovery time.  They had to make an additional incision to get the port out, but it came out in one piece and Mollie got to keep it as a souvenir (or medal of honor).  She was agitated when she woke up because she still had an IV in her arm and was hungry!!  We were very touched that so many of the OR staff came by to say hello and wish Mollie luck- I know they are always happy to see children getting their ports out.

The nurse cleaning the betadine off of Mollie's ears after the procedure.

The word from Dr. Howell is that he had to make one additional incision to free the port, but he got it out in one piece.  She does not have sutures because he closed the wounds with steri strips.  Apparently that makes the scar heal more neatly.  The downside is that Mollie hasn't been able to take a real bath for 2 weeks because she had to leave the bandage on.

After the surgery, we stayed in a hotel in Augusta so Mollie wouldn't have to endure the 3-hour drive home the same day.  For pain, she had received and injection of fentanyl in addition to the propofol used for the procedure and requested additional pain meds (morphine) in recovery.  She was pretty wobbly on her feet for a few hours and threw up once (after scarfing down a bag of chips, poor kiddo).   Other than the huge bandage, you would not have known she was just in surgery.  She perked right up when I told her we were going to Stevi B's for pizza with her best pal, Bella!

Bella, Mollie, and Lucy had a great time together eating pizza and playing arcade games.  They did NOT want to leave, but it was a school night for Bella and Mollie needed to get some rest.  A visit with good friends was a lovely way to end the day!

My parents came out the day after the procedure.  It was a good distraction for Mollie!  She went back to school for Thanksgiving week and brought her port for the coolest show and tell ever!

The port.  In close-up, you can see all the holes left from each time it was accessed.  Let me know if you want to see...

Then we headed up to the Blue Ridge mountains for Thanksgiving.  Matt's brother and his wife joined us for the holiday and we all had a wonderful (and cold!) time.

It has now been two weeks since the surgery and Mollie hasn't had any problems.  She only felt a little pain the day following the procedure.  Her ears have healed up quickly and have not caused her any problems.  I guess that's what you get for having a top pediatric surgeon pierce your ears!!

Rocking out in the park a few days post surgery.

Notice the earrings!

 I am so relieved that it all went well.  Words cannot express how thankful I am for everyone who has helped us and Mollie get to this point!

It's out!

Posted by Matt King:

Hi everyone, we will have a proper update with photos shortly, but wanted all to know that Mollie's surgery (and ear piercing!) went well today. She was given a little morphine for the discomfort but is otherwise fine and excited about some post-operation pizza. Aside from Liam's birth in January this is probably one of the best days we have had in a long time.

Thanks for reading!

Clinic Update and other highlights from early November

Some of you know from Facebook that Mollie's application for secondary insurance through the state of North Carolina was declined.  Boo!  Georgia has a much more generous program (called the Katie Beckett waiver) and I am so glad that we were there when she was diagnosed.  Definitely a low point, but we're moving on.

Highlights from the previous week include:

The weather 
We are having wonderful fall temperatures, beautiful skies, and brilliant foliage.  We pulled out our jackets to wear in the morning, but we shed them by the afternoon.  It is such a welcome relief after a sweltering summer!  We have enjoyed leaf-peeping in the parks near our house as well as the enchanting botanical gardens at UNCC.

The fall harvest festival (almost right in our backyard)
Lucy and Mollie enjoyed riding Freckles the pony and petting the goat, goose, chickens, rabbit, and piglet from a local farm.

Football
Matt and Mollie went to see the Panthers play the Saints last Sunday.  The Panthers are terrible, but Mollie doesn't care!  She is their biggest cheerleader! She composed numerous cheers for the team in her notebook and demonstrated them for us.  She is one cheerleader that I appreciate!

Matt took Lucy to see Davidson play football yesterday while Mollie went to a birthday party.  She was very brave and gave a high five to the mascot!

Clinic (Yes, clinic).
Mollie had clinic on Tuesday and it went very smoothly.  Her ANC is 4400!! and all other counts and blood chemistry are normal.  She is growing taller and slimmer and is feeling good.  We got some tips for handling her dry skin and scalp.  Dr. J. and I discussed doing a neuropsych evaluation (recommended for anyone who receives multiple doses of intrathecal chemo- probably will do it about a year from now) and scheduling Mollie's echocardiogram to monitor her heart function (recommended for those who have received adriamycin- done annually).  We go back in a month for another check-up and the port removal surgery is ON for this week!

We hope you all have a wonderful week ahead!  Please keep Mollie in your thoughts & prayers on Tuesday WEDNESDAY as she undergoes her surgery.  Tuesday is on my mind because I have to get everything ready by then!

2 Month-versary

Wishing a very happy birthday to my Dad!

Two weeks ago, when I went to the pharmacy to pick up a new prescription for Septra (the antibiotic that Mollie still takes), I brought the remainder of Mollie's chemo drugs, the 6 MP, methotrexate, and dexamethasone, for disposal.  This was a big step for me.  Those vials had been sitting out, waiting for me to take care of them, for weeks.  Since mid- August, actually.  I couldn't bring myself to do it.  There was that nagging thought: What if she relapses?  These drugs are expensive and we might need them.  So I ignored the thought and I ignored the vials.

Finally, I screwed up enough courage and unceremoniously dropped them off at the pharmacy.  Done.  Freed up some counter space.

It has been exactly 2 months since the end of Mollie's treatment.  This is the longest she has been without chemo since her diagnosis, and she is feeling good.  The skin irritation is improving. She is happy as a lark most of the time and is settling in to our new life. Occasionally, she wakes us up in middle of the night asking if we forgot her medicine.  For the most part, I don't think twice about her medicine before going to bed; I am so over that.  However, the downside of that is that we are always forgetting the Septra.  Giving a medication just 3 days a week is so much more cumbersome than giving it every day because there is no routine.

Incidentally, I also scheduled her port removal surgery today.  November 17.  Twenty-nine months after her port was placed. Two years ago, when Mollie was going through some of her harshest chemo and was bald and feeling crappy, I promised that she could get her ears pierced when she finished treatment.  Dr. Howell agreed to pierce her ears while she is under anesthesia so she won't even have to feel the pain.  Score!

She is looking forward to the surgery, having now experienced a regular blood draw from her arm.  We all are looking forward to putting that chapter behind us. I want to be happy about it.  I am happy about it, but I'm also scared to be happy.  Make sense?

Happy Halloween!

This was a fun-filled weekend!  Mollie didn't have school on Friday, so we spent the day getting ready for Halloween.  We went to the pumpkin patch, cut out bats to decorate our door, and looked online for pumpkin carving ideas.

Yesterday we carved pumpkins and roasted pumpkin seeds. 

Today, Halloween, we went downtown for a Dia de los Muertos celebration- the girls got their faces painted, decorated sugar skulls, and made crepe paper flowers.  Mollie soaked it all in!  Lucy is feeling a little under the weather, but she enjoyed herself too.  Of course they were very excited for trick-or-treating tonight.  Matt took them around the neighborhood after a quick dinner and they came back with lots of treats!  Then it was straight to bed because it is back to school tomorrow...

Cancer hardly crossed our minds this weekend!  Medical bills from Mollie's most recent hospital stay arriving in the mail were the only reminder.  This Halloween was infinitely more enjoyable than last year, when Mollie was in the hospital with H1N1 & pneumonia.  A real-life miracle. Hallelujah!

Hope your weekend was lovely!

Friends

We had a delightful weekend last weekend, filled with appreciation of the lovely fall weather and a ~3 mile hike on the pinnacles trail at a nearby state park topped off by a fall harvest doughnut!  Matt and I were so impressed that Mollie hiked the whole 3 miles without complaint.  It was moderately strenuous, but Mollie was skipping and running and picking up trash.  Lucy, on the other hand, was worn out after the first mile.  She ended up getting carried (and our backs are still feeling it).

Observing Mollie's stamina now makes us realize just how much the chemo affected her.  For the past 2.5 years of treatment, she didn't appear to experience too many side effects; yes, she lost her hair and had the occasional bout of nausea, but for the most part, she was very good-natured and you could not tell she was on chemotherapy.  But comparing her energy level now with just a few months ago, the difference is very apparent.  We are having fun with our strong, vivacious girl!

Despite her apparent good health,  this week found me worrying about Mollie.  Wednesday afternoon we went to the pediatrician to get her flu shot.  Before giving her the shot, they took her temp (standard procedure since the flu shot itself can sometimes produce a fever as an adverse reaction).  100.1- a fever!  Panic set in and I called oncology right away.  Their advice was to watch and wait.  If it stayed up for more than 24 hours, bring her in.  That evening, the temp came down, but Mollie started complaining of leg pain.  A low-grade fever and leg pain are classic symptoms of leukemia.  All I could think was relapse, relapse, relapse.  No fever on Thursday or Friday either (although my favorite Vicks thermometer had a dead battery so I was relying on the back up).  A friend encouraged me to get a CBC if it would make me feel better (thanks for the support Michele) and our pediatrician indulged my request (thanks Dr. L) when we took her in Friday for her flu shot.  Her counts look fine!  An unexpected bonus in all this is that the lab drew Mollie's blood from her arm.  She has been more scared of this than almost anything else (all her blood draws have been through her central line or finger sticks in the last 2 years), but she did it and she was fine.  So, according to Mollie, she's ready to get her port removed.

Mollie was ecstatic (Lucy too) last night because her bff Isabella (and family) came from Augusta to visit and walk with us in the Walk For Wishes.  They had a blast playing together at our house and Matt and I really enjoyed spending time with Marv and Michelle.  Goodness, we miss them all!  The kids had fun walking around the empty amusement park this morning and eating doughnuts afterwards.  The walk raised over $65,000 for Make-a-Wish!  Thanks to everyone who donated!

Mollie cried all the way home because she was sad to leave her best friend... but uncle Sam is coming to visit tomorrow so that will provide a good distraction. 

Hope you are enjoying your weekend! I am so thankful for friends near and far.

Post -script:  Hmmm... I just noticed I mentioned doughnuts twice in one post.  We hardly ever have doughnuts, so how did this happen?  Just lucky, I guess!