12.17.2010

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!

12.12.2010

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!

12.09.2010

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!

12.07.2010

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!

12.02.2010

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.

12.01.2010

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!

11.17.2010

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!

11.14.2010

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!

11.03.2010

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?

10.31.2010

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!

10.23.2010

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!

10.15.2010

Another Week

We would love it if you can make a donation to our Walk For Wishes team! 

Mollie has had another good week and I can honestly say I didn't think about cancer or relapse very much!  The biggest problem she faced was something about silly bands at school!

We got our final approval for Mollie's Make-a-Wish trip and the tickets and other info should be arriving any day.  Mollie and Lucy are so excited that we get to take a limousine to the airport!!  Matt and I are pretty excited too- we don't have to drive or pay for parking!

I am still struggling to figure out my new, post-cancer treatment normal.  Of course this is complicated by living in a new place.  Everything in our lives is vastly different from what it was two years ago.  I'm still trying to find my place.

We are all enjoying the cooler fall weather!  The 49ers are playing the Panthers next weekend.  Neither team has won a game this season, but Mollie and Lucy have declared themselves Panthers fans and Matt and I both grew up in the bay area so we thought it would be a fun game to go to.  Anyone have tickets they want to get rid of?

Happy Weekend everyone!

10.07.2010

Clinic Update

We went to Augusta yesterday for the day for the ribbon-cutting ceremony for the newly remodeled hem/onc clinic.   We were so happy to see the familiar faces of the doctors, nurses, friends, and staff that have helped us along this journey.   The new clinic is a vast improvement, but the staff are really the ones who make the clinic.
Mollie and Dr. V at the ribbon cutting.  He diagnosed her leukemia in 2008.
Side note:  I  won't be making that CLT-Augusta round-trip in one day any time soon again.  It is such a long drive (Michelle, sorry we didn't drop by.  There was just no time!!).  We checked on our house- depressing to see it sitting there empty.  It smells stale and closed up.  Not our home any more.

Mollie had clinic today in Charlotte.  It feels strange to be starting up at a new clinic for follow-up, but Dr. J and his nurse, Jackie, are very sweet.  The nurse is great with Mollie, finding her the foamy stickers and shiny band-aids that she requests!  The port access was swift and it worked perfectly.  Mollie's counts are good-  WBC 8.2 and ANC 5100.  Wow!  I am learning a little bit about what kind of CBC numbers to expect after treatment, but it still looks weird to me.  Her platelets are down a lot from last month, but well within the normal range, and her hemoglobin is about the same as last month.  She also had a palpable lymph node in her neck, which they will watch.  I am happy her counts are great, but I just can't let my guard down.  Matt and I know how quickly things can go from fine to critical.  Any little thing, like the lymph node, really gets me worried!  However, we got the go ahead to schedule Mollie's port removal surgery (will have that done in Augusta) for mid-November. 

I feel like I should be really pleased with how Mollie is doing, but instead I am just uneasy.  With treatment, there were clear benchmarks and we knew when to worry and when to breathe easy.  Now, things like the lymph node and skin irritation, make me want to request a bone marrow biopsy right away!!  PTSD is putting it mildly.

9.30.2010

Hope

Today is the last day of Childhood Cancer Awareness month, but these kids will battle all year long.  There is HOPE though.  A news article came out yesterday about a new treatment for neuroblastoma, that combines chemotherapy with immunotherapy.  They halted the clinical trial early because the immunotherapy was so much more effective than the standard therapy.  This same approach is now being tried with other pediatric cancers.  There is hope!

Also, I have been in contact with a study coordinator at Stanford who asked me to post this to help her recruit subjects (adults) for this program/study:
Stanford University is running a 6-week workshop that gives people who have
survived cancer two or more times the skills needed to regain their life back
after cancer and take control of their health. Participants also connect with
other cancer survivors. Go to http://cancersurvivors.stanford.edu  to learn more and sign up.
If you know anyone who qualifies, please forward this information to them. This is an online workshop so I don't think you need to be local to participate.

Lastly, if you are able (and believe me I know it is hard in this economy), please consider donating to our team for the Walk for Wishes to raise funds for the Make-a-wish foundation.  They do wonderful things for kids!

9.28.2010

Potpourri

This off-therapy business is uncharted territory for us.   Mollie is losing her hair, again.  She has bouts of itchy spots, like hives or bug bites, that respond to steroid cream or benadryl. And she is emotional.  Matt and I are assuming all the adjustments going on in Mollie's body explain these different symptoms.  We have been poisoning her with chemo for almost 2.5 years, and suddenly, it is gone.

My feeling is that the hair loss, which has slowed down considerably so it is more like "thinning", is probably due to her last treatment with vincristine in August.  Apparently, some batches of that drug, especially in combination with a virus, can cause hair loss.  It started when she was hospitalized in early Sept., so the timing makes sense.

A lot of children have skin and allergy problems after treatment.  Maybe the immune system goes into overdrive once the chemo is withdrawn.  We will keep a close eye, with the clinic phone number close at hand, and wait.  The good news is Mollie has lots of energy!  She has finally reached a point where 2-year old Lucy can't keep up with her (it used to be the other way around).  I love it!

We are going to apply some of that energy to the Walk for Wishes this year.  This walk raises funds for the Make-a-Wish foundation.  Make-a-Wish does not give money to cancer research or treatment (we have raised money for LLS in the past 2 years), but it goes to something equally important: providing joy to children (& families) in need.  Mollie and Lucy are really, really looking forward to going to Disney World in December, so we thought this would be a great way to channel the excitement!  The walk is Oct. 23 at Carowinds in Charlotte.  We welcome anyone who wants to join our team and walk with us.  Please consider making a donation to our team in honor of Mollie through this link.

9.21.2010

When Kids and Wine Go Together

 The cure rates for pedatric cancers, leukemia in particular, have shot way up in the last 30 years.   Still, the 5 year event-free survival rate for ALL is around 85%.  That means that if a whole classroom of kids was diagnosed with ALL, within 5 years ~4 would relapse or die.  I don't know about you, but I would find a different school.  Unfortunately, it doesn't work that way.  Cancer can strike any child at any time.  It could be your son or daughter, grandchild, niece, nephew, cousin, neighbor, or someone in your child's class.

There are a lot of "facts" about childhood cancers being thrown around on the internet and I don't have a lot of time or energy to fact check, but the bottom line is the way to prevent and cure cancer is through research and that requires money.  Pediatric cancer does not get a lot of research money.  Why?  It's not profitable for big pharma companies, it is relatively rare (so hard to get enough numbers to do big studies), and (I think) the kids can't advocate for themselves (and their parents are too strapped from the whole ordeal).

What does this have to do with wine?  Well, it is one of the few "gold ribbon" products that you can purchase to help support childhood cancer organizations (you can choose between two).  Order your bottle of 2009 ONEHOPE Arroyo Seco Reserve Pinot Noir before the end of September and $5 per bottle will be donated to Alex's Lemonade Stand or the Children's Miracle Network (both awesome organizations).

It is Childhood Cancer Awareness month.  How many gold ribbons have you seen? 

9.20.2010

Practically Perfect...

It has been a good week!


Mollie and I went to see the musical Mary Poppins on Tuesday.  We got dressed up for the occasion (and she dressed her doll to match).  It was fabulous evening.  To start off, we got a great (and free) parking spot just a block from the theatre.  That left us plenty of time to grab quesadillas before the show.  When we got to the theatre, they upgraded our seats... on the house!  The show was magical!  The new songs (like Practically Perfect) fit seamlessly into the story.  It was a fun show and the actors interacted with the audience quite a bit; I think Mollie is starting to appreciate how rich live performances are.

This weekend we took our inaugural family camping trip.  There were a few bumps- Liam tipped over in his chair and scraped his face and our old tent broke when we were breaking camp (better than when we were setting up camp)- but all in all it was a good time!  The weather was lovely and the park (Pilot Mtn., NC) was very pretty.  The kids took to it very well and enjoyed the experience.  We are looking forward to doing it again in the near future!

9.13.2010

Chemo-free Weekend

Off chemo and out of the hospital, Mollie is so full of energy!  We took full advantage of her good mood and energy this weekend.

Friday night we had dinner @ the Pita Pit and spent the evening walking around Uptown.  We just took in the sights, sounds, and smells of the BBQ and blues festival that was going on. 

The next day we went letterboxing in a local park.  This activity really appeals to Mollie because she likes following the clues and finding a surprise.  We walked ~2.5 miles and then played at the playground after.  We topped the night off with pizza at Brooklyn South (a nod to NYC).

Yesterday we hiked the Big Rocks trail @ Morrow Mtn. state park (~2.5 miles).  The weather was exquisite and we enjoyed being out in nature.  We spotted lots of interesting moss, mushrooms, and a dung beetle rolling a ball of dung uphill.  We took some time to learn a little about dung beetle biology when we got home.  The leaves are just starting to turn and fall there and we kept thinking the falling leaves were butterflies flitting by.

Mollie enjoyed it all and was ready to head back to school today!  She had a great day and is ready for more.

I am a bit of an emotional mess myself.  I'm not good with change (who is?) and we have had SO MUCH!  Nothing in our life is the same as it was last year at this time.  New baby, new city, school, home, doctors, etc.  I feel depleted.  This battle with leukemia (and all the other life-altering events that have occurred the last 2-ish years) has emptied our emotional, spiritual, financial, and physical reserves.   And then some.

I don't want to end this post on a low note, so let me just mention that Mollie and I are going to see the broadway production of Mary Poppins this week!  We got tickets on a whim after walking by the theater Friday night.  Looking forward to it!

9.09.2010

Clinic Update

Mollie had her first OT clinic visit today- woo hoo!  She was quite nervous about the unfamiliar clinic, but it all went well.  Basically, she will be seen once a month for the next year for counts and a physical.  We are to watch for any signs of recurrence like bruising, palor, malaise, and swollen lymph nodes.  She can't have any immunizations for the first 6 months OT and no live attenuated vaccines (like MMR) for the first 12 months OT.  As long as she still has her port in, we need to call clinic for a fever (because she could have an infection of that central line and could become septic VERY quickly).  She will also stay on septra for about 6 months.

The whole appointment took an hour at most.  It was surreal to sit there and have a matter of fact conversation about Mollie being off treatment.  Dr. J was good about answering questions and told me that eventually Mollie will be seen in their long term follow-up clinic that deals with late effects (neuropsych and physical) of chemo.

Mollie's counts were good:
Hgb 12.4
Plt 465
WBC 2.6
ANC 856

The ANC is a bit low, probably due to the lingering effects of this virus.  So far all the tests they ran in the hospital have come back negative (so it was not an adenovirus or parvovirus and not likely to be fungal or bacterial); still waiting for the skin biopsy results.  We'll probably never know what caused it....

9.07.2010

A Girl and Her Trophy

We didn't have the celebration we had planned for Mollie's last day of treatment, but the day was momentous and memorable none the less!  On Saturday morning, we presented Lucy and Mollie with trophies for being so courageous over the past 2 and a half years (810 days).  Mollie has been wanting a trophy for a while now and she couldn't believe she got a real trophy! 

I still don't know what my feelings are about Mollie going off treatment.  I know that I am scared of recurrence.  And side effects from the chemo, but mostly of recurrence.  I think about all the other families that have been on this journey.  For some, the treatment ended and they never looked back.  Other children have had countless health problems OT.  The most painful stories are of those children that relapsed and didn't make it. They died from this damn cancer after fighting it for 2+ years!  Scared is about all I can feel right now.

If you haven't been there, you just can't imagine what it feels like to sit waiting to find out if your child has relapsed.  Matt and I hardly talked to each other- I think we were each in our own little bubbles of worry, just trying to keep it together.  My mind was jumping from wondering how other parents felt when they were in our seats to 'how am I going to summon the strength to face this beast again, with a worse prognosis.' But... we got great news and I know how fortunate we are.  I am trying to focus on that.  I know Mollie feels some trepidation about going off treatment.  I don't think she fully realizes that the cancer can come back, but she just feels strange not taking medicine every night.  I can only hope that soon the nightly meds will be a fuzzy memory as we focus on living well, not worrying.

On that train of thought, we spent the rest of the weekend enjoying being out of the hospital.  My parents stayed until yesterday, so we did some shopping, walked around the UNCC botanical garden, dined at various local establishments, and took a little walk around uptown.  Today, we went letterboxing (if you don't know what that is, look it up and try it in your area).   We found a letterbox at a park that is just around the corner from our house.  Mollie and Lucy thought we were on a treasure hunt and had a grand time!  Liam got his second tooth so he was just enjoying the ride.  Mollie walked a lot and is feeling good!  Her gums are still a little swollen and the rash is just about faded away.  We will follow up with the oncs here on Thursday.

9.04.2010

from HOME!

Yesterday, the oncologist said Mollie's bone marrow looked like it was about to send out a bunch of neutrophils and he was right on.  Yesterday's ANC = 0; today's ANC = 1000!  She has not had a fever for more than 24 hours, so they discharged her.

We could not be happier.  She still has a rash and swollen gums, but we are to follow up with clinic next week and keep checking for fever @ home.  She is so happy to be home and we feel like a family again!

In other news, Liam got his first tooth last night, our friends Lauren and Justin welcomed their new son to the world yesterday morning, the weather here is gorgeous, and it is a long weekend.  Mollie picked a good day to leave the hospital!

More later... 

9.03.2010

from the hospital, day 6

I won't keep you waiting- no evidence of leukemia in Mollie's bone marrow or csf specimens!

She had her procedures this afternoon- a lumbar puncture, bone marrow aspirate, skin biopsy (of the rash), nasal swab, and got her port access needle replaced.  She got some morphine for the pain associated with the bma and biopsy, so hopefully she will remain comfortable tonight.

We still don't know what is making her sick- there is increasing evidence that it is some type of virus. Matt and I are breathing a huge sigh of relief, so thankful that there is no recurrence of the leukemia.  I hope we never have to go through that again!  No family should have to.  The fear, anxiety, and worry is just awful.

Settling in for another night in patient (well, Matt and Mollie will be staying here).  I did not think that this would be my post for Mollie's last day of treatment...  but I am so, so glad that the news today is positive.

9.02.2010

day 5 update

I'm headed to bed soon so I can meet my parents at the airport early tomorrow morning but I wanted to quickly update.

Mollie spiked a fever around mid-day and was feeling bad while the fever was up, but once it came down (with tylenol) she perked right up.  We did lots of crafts, painted her nails, watched Tinkerbell, washed her hair (the part of it that she would let me), and kept our minds off the hospital surroundings.  Mollie, Lucy, and I did the white blood cell ANC cheer before I headed for home tonight and apparently Mollie is drawing pictures of white blood cells right now.  We believe that attitude is very important and we are all visualizing the white blood cell factory in Mollie's marrow.

I realized I got quite a few phone calls from friends and family today and I apologize for not answering:  the reception is really bad in that room so I will try to get back to you in the next few days.

Please keep praying for a boost in Mollie's ANC!

from the hospital, day 5

Well, I am more optimistic today.   I can't say why because nothing really has changed, but I just feel better about everything.  We got Mollie's counts- her white blood cells (and neutrophils) are about the same as yesterday- low.  Her platelet count has come up a bit and hemoglobin is holding. 

We had a consult with infectious diseases a little while ago.  They agree that this is probably viral, but are adding an extra antibiotic to cover the (extremely unlikely) possibility of rocky mountain spotted fever (!)

I think her rash looks a little better.  Maybe it's just optimism, but it doesn't look as red to me. Mollie is in a little better mood and isn't tethered to the IV constantly so she's getting up, walking around, and just finding different places to sit in this little hospital room.  Sitting in bed for days on end is not good for anybody!

I brought some more beads, crafts, knitting,  and Tinkerbell the movie and we plan to spend the day crafting and not thinking about cancer. 

I will keep updating here as we know more; we are still on for a spinal/bma tomorrow afternoon unless counts come up in the morning.  They are running some tests to check for different viruses and we should get those results back today or tomorrow.  If they identify what this is, they will cancel the spinal and wait until she is better to do her off treatment assessment.  I'm praying so hard for those counts to come up!! 

9.01.2010

day 4 update: tired and terrified

After I posted today, I got Mollie ready for bed and helped her brush her teeth.  Her gums were bleeding a little, probably because her platelet counts are low and she hasn't brushed for a few days.  She just lost it, and so did I.  She said she is so tired of all the "ugly" things (bleeding gums, rash, etc.) that keep happening to her in the hospital.  It is beyond hard to see your child suffering and to be helpless to stop it. I can't stand it! 

Then, to top it all off, she spiked a fever of 102.6 just as I was leaving.  Honestly, I am terrified.  I'm taking a deep breath and I will try to get a good night's sleep.  We could use some prayers, good luck, and patience. Tomorrow is a new day (hopefully one filled with a positive ANC).

From the hospital, day 4

The only good news is that her white blood cells (overall) and her platelets are up slightly.  It looks like we are here for a long stay.

Mollie has not had a fever since yesterday, but she still has the itchy rash.  The lab lost Mollie's blood sample this morning so we didn't get her counts until just now:  ANC is 0.  She has a spinal tap and bone marrow aspirate scheduled for Friday if her counts don't show any sign of recovery by then.  The doc said he expects to see counts start to recover after two weeks of being off chemo; if they don't, he likes to do an LP & bma to rule out a recurrence of the leukemia.   We NEED those counts to come up.

I don't think she is relapsing because her counts always take a long time to recover when they bottom out, but I admit I am worried.  I am trying not to dwell on it because it is what it is- worrying won't help.

Mollie was in pretty good spirits today- she is into beading (it keeps her hands busy and not scratching her rash) and crafts as usual.  Today she painted a birdhouse and made some little fuzzy creatures from a kit I had.  And she got a good laugh when we made Liam sit on a whoopie cushion!!

Getting her to eat is a struggle and I still haven't succeeded in bathing her.  I'm feeling down; this is not at all what I had planned for this week.  We were supposed to go to Augusta for Mollie's blood draw and then celebrate the end of treatment by going on a camping trip this weekend.  The only thing that matters, though, is that Mollie beats this.  So we press on and hope that she has a relaxing night while her bone marrow cranks out neutrophils.  I brought a lavender sachet for her pillow to give her sweet dreams (thanks for the tip, Michelle).

8.31.2010

From the hospital, day 3

Mollie seemed a little bit better today.  Her counts are about the same as yesterday (negligible ANC) and her rash is still present.  It seems like it is moving downward- not so bad on her face today, but worse on her tummy and back.

They decided to give her IVIG because her immunoglobulin levels are low.  IVIG is pooled IgG that has been extracted from the plasma of over 1000 blood donors (and is very, very expensive- Mollie's dose probably cost more than $6000).  Mollie has had it before (when she had a suspected staph infection in Dec. 2008) and she had a very severe reaction (dropping oxygen sats and increased blood pressure).  It was extremely scary (as in, yelling for the doctors because Mollie was turning blue), so Matt and I were really nervous about today.  But it all went well.  Mollie was premedicated with Benadryl, Tylenol, and Solu-Medrol, and her nurse, Kaitlin, was very cautious with the pump rate and diligent about checking for signs of an allergic reaction.    She developed a slight fever during the second step, but it resolved quickly without any additional meds.  She remained afebrile all day and the steroid (Solu-Medrol) seemed to help with some of the itching and redness of the rash.

Mollie has little bouts of feeling well, but the meds and just being in the hospital are getting her down.  She is not eating much.  She reminds me of an injured animal because she is maintaining this hunched over posture to protect her port.  She doesn't want anyone to come near it and she didn't relax at all today.  She is doing a great job complying with the nurses (who are great) and telling us how she feels.  She just wants to go home and I don't blame her!

Today we were lucky that Mollie's kindergarten teacher from last year (Mrs. S) watched Lucy all day!!  Lucy really needed some one on one attention and I know she had a great time.  Thank you Mrs. S!  Also, Mollie's new teacher, Ms. C came to visit her in the hospital and brought a card signed by the whole class!  Mollie was pretty shy when she was there, but she was looking forward to her visit all day and really enjoyed looking at the card after she left.  Thanks Ms. C!

The last bit of news, and the best, is that Mollie's wish was approved.  We are going to Disneyworld!  You may remember she wished for a playhouse a long time ago. When we found out we were moving, we asked them to put a hold on that wish because we were not sure if that would be the best idea.  After talking things over with Mollie, explaining that a fancy playhouse just won't fit in our yard right now, and looking at pictures of Orlando, Mollie got pretty excited about Disneyworld and the Give Kids the World resort.  We are going in December so it will be all decorated for Christmas!

Thanks for all the comments- it helps us get through, it really does.  Hearing from other cancer parents who know how much this sucks, and our other friends and family cheering us on.  When I leave the hospital without Mollie and feeling down, I think about the families who just received a devastating diagnosis today, or worse yet, lost their son or daughter today, and I am thankful for what we have.  Tomorrow is the first day of National Childhood Cancer Awareness Month. I urge you to spread the word and make a donation to an organization that specifically supports pediatric cancer research or treatment, such as the ones listed in the sidebar.

8.30.2010

From the hospital, day 2

We are still here.  Mollie has been spiking fevers on and off since yesterday and has developed a rash over her face and trunk.  The oncologist (Dr. M) thinks it is viral, but Mollie is getting broad spectrum antibiotic coverage just in case.  There isn't much else to report; her ANC is still very, very low and she's feeling pretty lousy overall.   She is tired and bored; they are testing her for a virus so she has to be in 'isolation' until the tests come back.  We completely understand (they don't want to expose all the other immune compromised patients on the floor to what she has), but the contact precautions are annoying.  No playroom.  Gowns and masks for staff coming into the room.

The hospital here is similar to MCG.  The staff are friendly and responsive.  The hem/onc unit has been recently renovated so they have some cool state of the art equipment in the patient rooms, like flat screen TVs and barcode readers for the hospital bracelets. Funny how the little annoying things, like the IV beeping incessantly and the slow pharmacy, are the same.

I'm off to get a little sleep, hoping that Mollie's bone marrow cranks out a bunch of baby neutrophils tonight.

8.29.2010

F & N

Fever and neutropenia, that is.  They should call it effin' N.

Mollie is in the hospital.  She has a very low ANC (~30; remember, normal is >1500) and a very high fever (103).  We consulted with the oncologist on call in Augusta and he said to take her to the children's hospital in Charlotte.  I had hoped it would be an in and out trip, but that wasn't in the cards.  Levine Children's Hospital is every bit as good as MCG, but we just are not familiar with their staff and protocols.  The port access did not go well (it never does in the ER) and she had to get stuck twice.  But child life (Shannon) was awesome!  She brought Mollie a movie, stuffed animal, and blanket and got her talking about her new Scooby Doo silly bands.  I am so, so proud of Mollie.  Scared as she was, she didn't shed a tear. My heart sunk when I heard that her white blood cell count was only 0.5 because I knew that earned her an admission.

She is feeling pretty low right now and my heart is breaking for her.  She will miss her second week at her new school. And she was designated the star student for this week!  She had her poster and show and tell all ready to go.  I will head back to the hospital in the morning with a bunch of stuff to keep her busy.  Today she was interested in doing math in the ER!!

I am feeling insecure because these aren't the doctors I know and they don't know Mollie.  However, deep down I don't care who is treating her; I just want her fever to come down and ANC to go up, up, up!!

8.25.2010

Grade 1, Day 1

Yesterday was the last day of steroids (yay!) and also the last day of summer (boo!).  School started today.  I am struggling, but Mollie did amazingly well.  New school.  New bus procedures.  She knows no one.  Yet, she got off the bus smiling and telling me she had a great day!  She is my hero!

I can't stop comparing things to how they were in Augusta (bad, I know, but I just can't help it).  We had such a wonderful staff at the school and Mr. B, the bus driver, was one in a million.  It's just different here, new, and I don't know what to expect. There are other circumstances making back to school harder for me this year. Mollie isn't a brand new kindergartner any more, so they don't coddle them nearly as much.  And, aside from her teacher and the school nurse, no one knows about the leukemia.  You can't tell from looking at her and we decided we didn't need to send home a letter to her classmates this year.  If she chooses to talk about it,  she can.  We may ask her teacher to say something to the kids about her absences (at least once per month for clinic), but probably not.  It is hard for me to meet and talk to people without immediately telling them about the leukemia- it has been such a big part of my life.

Mostly, I am wondering where my little girl went.  Now she's a big first grader!
Mollie and Liam on Mollie's first day of First Grade

Soaking in the sprinkler on the last weekend before school starts.

8.22.2010

Steroids, Day 3

We are 50% of the way through this last round of steroids.  Mollie is having a tough time because this is the highest dose she has been on since the beginning of treatment.  There are lots of sibling fights and hurt feelings.  It makes me so glad that Lucy was too young to "get it" for most of Mollie's treatment.  This morning she was crying over how Mollie was treating her; I doubt she will remember it and I am so glad it will be over soon.

Some photos from Friday:

8.20.2010

Clinic Update

We are back home in Charlotte.  Sigh.  It has been a long, emotional day.

We headed out at 6 AM to make the morning appointment in Augusta.  When we were about 45 minutes away, Matt said he felt tired; we pulled over so I could drive.  During this exchange, Matt got into some ferocious fire-ants and got stung on his feet.  Other than being painful and annoying, we didn't really think too much about it and went on our merry way.  About 10 minutes later he said that he was really itchy. I looked over and he was bright red, swollen face, and covered in hives!   We pulled into a gas station to get an antihistamine, but I was very concerned about this allergic reaction and wanted to get to the hospital as soon as possible.

We made it and Matt was pretty miserable for an hour or so, but had no difficulty breathing.  Pam and Kate, the Peds Hem/Onc nurses kept a close eye on him. Needless to say, we are going to get him an epi-pen STAT!  Kind of a nerve-wracking start to our big day!

Clinic went well though.  Ms. Kym and Beth (the nurse practitioner) surprised Mollie and Lucy by attacking them with silly string and giving them a huge Littlest Pet Shop playset to celebrate Mollie's last treatment.  They were thrilled!  The clinic has been renovated over the last few months and they just moved back into the new space this week so we got to check it out.  The individual TVs in the infusion chairs are genius- kept the kids busy while waiting for counts.


Mollie's ANC is low (700 by machine- probably <500 manually), but her hemoglobin and platelets are normal.  This is probably just a response to the increased dose of chemo she has been taking the last few months and probably also explains why some of her skin lesions have been slow to heal.  Beth put her on Keflex and hopefully that will help things clear up.  Since her ANC is low, they want us to hold chemo for 2 weeks.  Well, 2 weeks from today is Sept. 3.... so, no more chemo!!!  She will be officially off treatment (OT) on Sept. 4, but we have to go in to clinic on the 3rd for counts.  She still has the 5 days of steroids and she will be on the weekly Bactrim for the foreseeable future, but the nightly chemo is really done.  I don't think the enormity has hit me yet.

Dr. A did Mollie's lumbar puncture and it was uneventful; I went upstairs for a brief visit with Carson- he is out of the ICU and back on the 5th floor!  Mollie got a nice anesthesia-induced nap in the recovery room and then we went to Stevi B's for pizza.  Afterwards, we went over to Isabella's house so the girls could get a couple hours of playtime- they miss each other so much!

I couldn't help thinking about Mollie's diagnosis on the long drive home.  The first night she stayed in the hospital, after her diagnosis, Matt stayed with her.  I went home to be with Lucy and I just remember sitting in Mollie's bedroom, wondering if she would ever sleep in there again.  We are so, so lucky.  I couldn't have imagined this day, back then.

8.18.2010

This Week

Über busy.  Among other things, we're still trying to organize/unpack, learn about our new home/neighborhood, get Mollie ready for school.  To top it off, Mollie has her last spinal tap (for real) on Friday. 

Matt was out of town for a long weekend camping with his friends, so I held down the fort  and tried to keep the kids busy with some summer activities here in North Carolina.  We went gold panning at Reed Gold mine (site of the first documented discovery of gold in the U.S. for all you Californians) and Mollie found 2 tiny little gold flakes.  I was more excited than she was- she thought she would find big nuggets!  And Lucy was just excited to get her hands in the muddy water.

We also had a lovely lunch with Mollie's kindergarten teacher at Ikea (the kids love that place) and visited Matt's grandparents in South Carolina.  It has been good to spend a little time with people we know since moving to a new place can be very isolating.

Mollie is doing well.  She has had some skin issues (reminiscent of last summer)- a few rashes, blisters, and sunburn/abrasions on the backs of her hands.  We have been very diligent about sunscreen and she seems to have a reaction to it no matter which brand we use.  The 6-MP and Bactrim that she takes daily can both cause sun-sensitivity so those are probably contributing.  In any case, you can tell she and Lucy have been outdoors enjoying the summer.  They have the scrapes and band-aids to prove it!

Please keep our friend Carson in your thoughts and prayers.  He has been in the ICU for 9 days suffering from rare toxic side effects from chemotherapy- liver toxicity and fluid in his lungs.  His mom is doing the best she can and my heart really goes out to her.  It is so, so hard to see your child suffer and not be able to do anything about it.  You just want so badly to take control, to know how long you're going to be there, to know the "plan", and to make it all better.  Mollie has not been in the PICU, but I can imagine it is many times harder than being in the hem/onc unit.  I do know that nothing will really help except for Carson getting better.

8.11.2010

To the Point

Check out this short and pointed article in Working Mother.

Every single sentence in this article is something I have thought or experienced.  

I live with it every day, but I don't often dwell on the reality that my child has cancer.  My child has cancer!  It intrudes on our daily lives in the form of anxiety & worry, chemo side effects, the need to always have back-up plans and carry the Huber needle, Emla cream, and thermometer.  But mostly, it takes time away from doing normal things.  How many hours have we spent in clinic waiting rooms, the ER, or the hem/onc unit?

I look forward to September 3 (Mollie's chemo end date) with trepidation, survivor's guilt, and a feeling that by celebrating, we are tempting fate. I plan to use these feelings to help do something about childhood cancer.  I haven't decided what, but I'm mulling it over.  You see, one of the most tragic aspects of pediatric cancer, is that the people who most want to advocate for these little patients, are also the most overburdened and exhausted.

8.09.2010

We're Back

Just a quick note to say we're back from California. We had a great time visiting family and friends and all the travels went well.  Now we are back in our new house with quite a bit of unpacking and organizing to do. We are all jet-lagged except the 2-year old...figures!  It will be a while before we're back to normal around here.  More details from our trip when my mom sends me the photos!

One of our clinic friends, Carson, was admitted to the ICU last night after 5 days in the hospital.  The docs don't have a definitive answer, but they think that Carson is experiencing liver disease as a side effect of the chemotherapy.  We are praying that he makes a steady recovery. 

7.22.2010

Deep Breath

I can't convey in words how full the last week has been.  The move has gone pretty well so far; the movers did an excellent job and took much better care of our belongings than we would have.  Our new place is about the same square footage as our house (fingers crossed for it to sell quickly), but a different layout, so I am having to rethink how to arrange everything.  But, we are settling in.  My aunt Sally is here visiting, helping with kids & unpacking, and providing good company.  We are making progress unpacking boxes (and boy are there a lot of boxes to unpack).  It is wonderful to have the market just a short walk away (less than 2 blocks) and the pool just 3 blocks away. 

We went back to Augusta on Sunday and stayed overnight with our good friends for Mollie's appointment on Monday.  Mollie and Lucy had a great time with Isabella- it was the perfect way to prepare for a week of steroids.  Mollie received her monthly chemo and her counts were perfect again:  ANC is 1800!  She is tolerating the steroids pretty well this week.  The evenings are rough because she is tired and hungry; she wants to eat, but she can't make up her mind about what she wants.

Last night Lucy spiked a fever of 103.7.  She was feverish all night and into this morning, but it seems like she is recovering now.  I don't handle fevers very well any more- I want a CBC. Stat!  Now we just have to hope that the rest of us, especially Mollie and Liam, don't come down with the same thing because we are headed out for vacation on Saturday.

7.13.2010

This Home

Happy Birthday to Mom and Auntie Sally!

I am going to miss our house.  This house, with all it's annoying quirks, funky wiring, and stained carpet, has been our home for the past 5 years.  Inside these walls, we have hatched plans, celebrated accomplishments, and conquered fears.  This is where Mollie found comfort after being discharged from the hospital and I slammed doors to vent my anger at her cancer diagnosis. We brought both Liam and Lucy home to this house when they were just one day old.  Mollie learned to read here and lost her first tooth.  Lucy took her first steps and said her first words.   We have experienced so much of the joy, laughter, courage, anger, hurt, healing, and love that makes us a family in this house.  It has been our home base.   

Okay, now the tears are really flowing.  It's not just the house.  It's the community and the connections and memories we have here.  When we bought this house, we didn't intend to stay here forever, but that doesn't make leaving any easier.  I like the townhouse we are renting and I am eager for our family to be together every night, rather than have Matt be away several nights per week.  But I am still sad.

Maybe I would feel differently if we were going to make a profit (or break even) on the sale of this house.  Or maybe not, but the movers are coming either way.  I'm putting on a smile for my kids.  I've let them see me cry too, but they need the reassurance that this is okay.

We're going on vacation at the end of the month (just a week after they deliver all our stuff).  My aunt is coming out to help with the unpacking (I can't thank her enough- she is the best godmother ever!!) and help me with the kids on the airplane because Matt won't be able to join us for a week.  It is really chaotic (our life always is, it seems), but I think the vacation will help us take our minds off the move and relax.  Hopefully we will return rejuvenated and ready for the beginning of first grade!, the end of treatment!, and some more unpacking, organizing, and adjusting to our new home.

7.12.2010

Pandemonium

Just a quick update because things are pretty wild around here....

Mollie made it home from camp on Saturday.  She had a great time- even better than last year!  We really appreciate all of the donations of time and money that make this camp possible.  I am amazed at how well it is put together and how much all the kids look forward to it and enjoy their week at camp.

I also enrolled Mollie in the Christmas in July program through The Blanket Fairy.  A wonderful volunteer "adopted" our family and sent a surprise package of goodies, including handmade tutus and hairbows for the girls.  They loved all the goodies and played with them all afternoon yesterday.

The focus for this week is the move- the packers are coming tomorrow!  I am getting more frenzied by the minute.  The kids want to play games and do projects and I simply can't do that while getting ready for the movers.  If I give them specific tasks (take all the magnets off the fridge and put them in this box), they are very good at doing it.  But a lot of the work is simply organizing.  Right now they are watching The Sound of Music, so I better take advantage of the relative quiet!

7.09.2010

Cast Off

I miss Mollie so much and can't wait to hear about all her adventures when she comes home tomorrow.

It was an adventurous week for us too-- Lucy got her cast removed on Weds.  It was much worse than when they put it on. She was scared and uncomfortable and cried, screamed, or whined for a solid 4 hours.  She still walks like she has a broken leg- partly from the physical pain due to it being immobilized for almost 4 weeks, but the rest is psychological.  She's moving around pretty well and really, really enjoying baths and showers.

The movers are coming to pack on Tuesday!  To say we aren't ready is an understatement, but it is really happening.  Yikes!

7.05.2010

Off to Camp

By now, Mollie is at camp!

The camp is about a 2 hour bus ride from Augusta.  Everyone meets up at the hospital to check in, hand over their medications, and get on the bus. Some kids are giddy with excitement and others are really shy and reluctant to leave their parents.  Mollie was sort of indifferent when we first arrived; she recognized her buddy Zackary, but he was in a funk because of his cabin assignment (but he did have cool blue hair!). 

But when Katie arrived, Mollie lit up!  Katie and Mollie were in the same cabin last year (and went to the same elementary school), so it was a great reunion.  After chatting a bit, the two went in search of other girls in their cabin.  I overheard them introduce themselves to one little girl by saying, "And what do you have?  A port?  I had seven shots- 3 in my legs and 2 in each arm. "  And so on and so on.  That sums up why this camp is so important. 

The drop off is also a mini reunion for parents. Next year I need to remember to bring some folding chairs and cool drinks!

7.04.2010

Independence

Happy 4th of July! 

We ran errands, stopped for delicious all-American burgers @ Five Guys, and lit sparklers at home.  A modest nod to our nation's birthday was all that we could muster this year.


Mollie gets her own independence this week- she leaves for Camp Rainbow tomorrow!  She is a little worried about missing us while she is gone.  We have sent her lots of letters and packed photos of all of us for her to look at if she feels homesick.  I think she'll be fine, but she has needed some extra reassurance.  She's one year older, more self-aware, and we haven't been spending much time around the hospital lately (thank goodness).  Plus we have the upcoming move (scheduled for the week after camp) and all the uncertainty that comes with it, so she is dealing with a lot emotionally.  I hope camp goes off without a hitch because she really deserves that special experience!

7.03.2010

This I Believe

I heard this essay on The Bob Edwards Show on NPR the other day and I really identified with it.  It reminds me of many of the women in my life, and I can see Mollie growing up to express similar thoughts one day.

Here is the text of the essay (click the link above to listen)

To Preserve A Benevolent Attitude

Verona Wylie Slater - Penn Valley, Pennsylvania
As heard on The Bob Edwards Show, June 25, 2010
My early life was spent in Presbyterian parsonages where I learned a great deal about the “thou shalt nots” of this world. In those days [my father's] parishioners’ problems were often brought to the minister for settlement. He was supposed to be their spiritual advisor, marriage counselor, economic stabilizer, and psychiatrist. Sometimes, father referred to conferences with his flock, saying he had been wrestling with men’s souls. In these mysterious matches I thought of God as a giant referee who spoke through father.

My brothers and I held long conversations about what might be true or false in Christian teachings. One evening during a thunder storm, my eldest brother was inspired to make an unholy experiment. He stood on a sloping rock, which jutted out into the lake near our summer home. Holding his face upward, he defied the Almighty to strike him with a bolt of lightening. The storm was loud and close. The skies opened with a terrifying flash, but the bolt flew across the dark waters a mile away. We felt relieved, foolish, and very insignificant. I have felt unimportant many times since that night and remembered with a smile a bolt of lightning which scorned the Parson’s children.

It took many years to recover from the idea that God was a figure of personal vengeance. Now I think of God as a spirit of goodness, reflected in sane human beings everywhere. In much the same way I look through the pantry shelves to see what is needed for dinner, I have frequently taken inventory of my thoughts searching for a simple philosophy by which I might live. My philosophy embraces three things I would like to be as a woman: wise, gentle, and brave. To be truly wise would take more than one lifetime, perhaps. But achievable wisdom implies the use and enjoyment of my five senses. I can observe. I can read and gather at least a partial understanding of the world. I can learn by listening to others. I can enjoy music. I can taste what is sweet or bitter. I am warned by the smell of smoke and pleased by the fragrance of flowers. With my fingers I might stroke the silken hair on the head of a child. But these same nerve ends keep my fingers from the fire.

Gentleness is the sort of kindness which accumulates with wisdom. It is the big watchword in my book. It is so easy to become an opinionated monster after 40. With age, I want to preserve a benevolent attitude. Children need tenderness to combat their natural savagery and to comfort them in distress. A soothing manner is an important ingredient in any formula dealing with men. It lightens the tensions that shorten men’s lives. A gentle approach toward other women is a vital necessity if I hope to accomplish anything in group projects and if I wish to have friends.

The real value of gentleness is lost if it is not fortified with bravery. When I am afraid, I am paralyzed and ashamed. Women who show a quiet courage in grief and disaster fill me with admiration. I have to evaluate and control fear. In order to reason clearly, I must be brave. Rather than a monument to my own failings, I want my children to be a credit to the society in which they live. All the wisdom I glean, all the gentleness I can maintain, all the courage I can command, I want for them.

Verona Wylie Slater was a housewife and mother to three children in Penn Valley, Penn. She was the daughter of famed New York minister Edmund Melville Wylie, and the sister of writers Philip and Max Wylie.

7.02.2010

"A Mighty Fine Day"

When Mollie got in bed last night, she told us, " I know tomorrow is going to be another mighty fine day!"  She had a great day yesterday.  Matt's parents are visiting and she and Lucy got to play with grandma Janet ALL DAY.  They played playdough, spy (with their new walkie talkies), went for a walk at the nature center, and played some more. 

In the evening, Michelle and I took Mollie and Isabella out for dinner so we could all enjoy some time together.  We went back to our house after dinner for some extended conversation and playing.  We are sure going to miss the J family when we move in a few weeks!

Mollie is back to her normal self now that the steroids have worn off.  It is wonderful to see her playing and taking advantage of all the free time she has.  She has been creating and doing a lot of imaginary play!  We can't wait for Lucy to get her cast off so she can join in a little more.

I have to agree with Mollie.... it was a mighty fine day!

6.27.2010

Offline

My computer is sick... so I'll be offline (hopefully) temporarily :(

6.24.2010

Clinic Update

Mollie's clinic visit went well today-we went in the afternoon and there was nobody else there!  Her ANC is 1100 (perfect) and other counts were great.  We forgot to put the Emla cream on her port to numb it up, but she let me rub a little cream in before they accessed her and it was no problem.  She is such a champ!

Even though everything went smoothly, Mollie was a little cranky and teary.  I still haven't figured out why; my best guess is that she was tired.  She has started her steroid pulse so I'm expecting more tears and frustration (for both of us!) over the next few days.

Oh, I also learned that her last spinal tap wasn't her final spinal tap like we originally thought.  I had assumed that since her "end of chemo" date is Sept. 3 that this chemo cycle, which ends ~Aug. 20, would be her last cycle.  But the protocol calls for her to continue with the next cycle and then just stop chemo mid cycle on the "end date".  It seems kind of arbitrary to me, but it means that Mollie will have a spinal tap in late August and will stop chemo on Sept. 3.  No problem- Mollie seems glad she gets to see her nurses in the OR one more time.

She got to hang out with Ms. Kym today at clinic and is starting to get excited for Camp Rainbow.  If you want to send her a letter or package at camp, make sure you get it in the mail next week so it makes it there in time for camp!

6.23.2010

In Full Swing

Summer has arrived around here- sweltering heat, big bugs, mosquitos, weeds. Not my favorite season here in Augusta and with Lucy in her cast, it is even worse. We are staying indoors for the most part because when we go outside she wants to play in the sandbox. Sand and casts are not a good combo!

Mollie is enjoying her second week at summer day camp and is in pretty good spirits over all. She loves seeing her old buddies from pre-K! Tomorrow she has her monthly IV chemo/steroid pulse- I made her appointment in the afternoon so she can participate in the craft activity at camp in the morning.

Lucy is now walking on her cast pretty well (and climbing the stairs when I'm not looking!). She's got spunk! She knows how to manipulate and she's not letting any broken leg slow her down.

Liam is sweet as can be and growing so quickly! I am in search of new carseats for him and Lucy. They are both about to outgrow their seats; unfortunately, Lucy's seat is also expired, so I can't use it for Liam. Anyone tried the Graco Nautilus seat? Or any other recommendations for a seat for Lucy?

We are chugging along...