Helping Hands

When cancer invaded our lives, we began to feel the calling to make a difference in the pediatric cancer world.  And we are not the only family who feels this call.  As difficult as this past week has been, we have also been able to help make a difference and that has meant everything.

Last Saturday, we went to an Alex's Lemonade Stand event in honor of our friend Lily.  There is just something about kids and selling lemonade.  It was a hot and sunny day.  Carter and Lily held one of the signs by the road to attract business...

Lily's big sister Anna setting out lemonade...

Carter and Julia enjoying some of the yummy treats...

There was even free Hawaiian Ice :)  After chatting for awhile, Carter and Julia would ready to jump in and help.  I had the privilege of standing back and watching them all, a fly on the wall to their conversations.  I have to say it made me teary.  When Lily would introduce herself to people to people she say, "I'm the one with the cancer.  This is Anna, she's the one without." Anna immediately noticed Carter's Give Kids the World shirt and they jumped right in to talking about their own Make-a-Wish trips.  Then they each gave each other the kid's version update of their siblings' cancer treatments.  Truly, not the things of childhood, but daily life to this handful of kids. 

They had a great time selling lemonade to their customers.  They are all little entrepreneurs in the making ready to do whatever it takes to fill those big jars with cash.  In the end they raised over $1,000 in an hour and a half! Such brave little warriors, raising money for the war they are all fighting.  Profound.

Then on Monday night we headed to The Loop for their first fundraiser for our foundation- Kids of Childhood Cancer- at Brenners'.  We were so excited to see all our friends who came out to support the cause. 

In no time the place was completely packed.  It was heartwarming to see so many people coming out on behalf of our kids.  We had a chance to catch up with Vinny and his family.  We just love this kid! He, Carter, and Julia jumped right in playing legos.  Vinny is Mr. Lego.  I loved seeing their smiles and hearing them laugh.  Vinny looks so good these days.  For a child that was told last winter he had two months to live, has endured some horrible chemo, and was put on hospice not to long ago- he is a walking miracle.  The doctors cannot explain.  The tumors have shrunk, he was taken off hospice, and this week he went back to kindergarten.  Though his battle rages on and regular inpatient chemo will continue. We love you Vinny!

These kids inspire me.  They are heroes in every sense of the word.  They have endured more in one handful of life years than most adults do in a lifetime.  I can't think of a better way to spend an evening than hanging out, playing legos, and drinking milkshakes.   

And we raised $585 for Camp Brenner kids!!!

Broken Heart

I was scheduled to return to the cardiologist this afternoon to get the  results of my 3-day monitor.  I was meeting with the electrophysiologist this time- the electrican of the cardiology department.  We had just finished eating breakfast when the office called to say he had an emergency and needed to fly out this afternoon.  Could I please come right now? Sure... by now, how soon do you mean? By the time I showered dressed the kids, secured earlier babysitting, and got everyone out, "now" was more like an hour.

The nurse came in and did another EKG, not sure why, how many of these does one person need in a month? When the doctor came in he clearly was not familiar with my case.  Frustrating.  He took a quick history and asked when I was scheduled to wear a monitor.  That's why I'm here.  To hear your interpretation of those results! So, he proceeded to review it right there.  This is going to take longer than I thought.  He did seem to have a good grasp of the situation.  For those of you not familiar here is the short history...

I started having episodes of rapid heartrate when I was 16.  A week at Bethesda ruled out a variety of conditions and I was diagnosed with SVT (supraventricular tachycardia).  I did not require treatment until I was 25 and started having dozens of episodes a day.  I was put on beta blockers and things have been going along great for the past decade.  I was diagnosed with Graves disease 2 years ago and had my thyroid removed.  They just regulated my thyroid med levels this past winter and in the spring I started feeling really sick.  It was determined my beta blockers were now toxic to my body.  No one knows why this happened and I was weaned off them.  I felt better for a few seeks, then the SVT started back.  So now, it's time to talk ablation surgery to try and cure this condition for good.  To make that decision, I was put on a heart monitor to attempt to capture the cardiac events. 

When he looked over the heart monitor readings, he said it confirmed the ventricular tachycardia and was definitely a candidate for ablation surgery.  It is done as a catheter procedure.  They thread their instruments through both the groin arteries and neck if necessary.  The heart is then mapped, from an electrical perspective.  The offending nodes are then ablated by laser.  He asked if I wanted to watch a video of the procedure.  Umm... no.  I don't want to remember a bit of it, if you don't mind.

He left and his nurse scheduler came in with her calendar.  She opened it and said, "So, what do your next few weeks look like?"  I started to cry.  They don't know anything about Julia's situation.  I told her about her upcoming tests, appointments, and open-ended questions.  And she started to cry.  So, we went ahead and put a surgery date on the books for September 20th-op on the 14th.  They are waiting to hear back from me after all of Julia's upcoming appointments. I am also considering switching to a different doctor who I have heard many positive things about.  Please pray that we make the right decision about doctors, hospitals, and timing.

The GI Motility department at Brenners' called me back on Monday.  They have Julia scheduled for Monday, August 30th.  The nurse talked to me for a long time about the procedure and Julia's history.  GI had called in a versed prescription for us to give her before the test.  In talking with them yesterday, we determined she likely will not need it.  In the grand scheme of all she has been through, this should not be terribly uncomfortable or upsetting to her.  We are hoping to keep her conscious so they are able to get her feedback on sensations if she chooses to cooperate.

When we got back to the house today after my appointment their was a message from Dr. McMullen's office.  He is Julia's radiation oncologist (Dr. Hot Dog).  Nurse Diane had emailed him last week to get his input about Julia's bowel situation.  He wants to see us asap.  He is probably going to be upset that we did not call him sooner, but I am happy that he is on board at this point.  I have nothing but the utmost respect for his approach, knowledge, and discernment.  He was a strong guiding force in Julia's initial diagnosis and treatment plan.  They had an opening on Thursday, September 2nd.  That is the day of her next chest x-ray, so they told us to come down after that and Dr. McMullen will actually interpret the results for us.  I am eager to hear his input and be able to pick his brain in this situation.  I have complete trust in his skills.  One of our fears is that the outcome will still be vague after the x-ray and we will be forced to make the decision for a CT scan or not.  I would much rather Dr. McMullen make that decision, or at least weigh in heavily.  

After the appointments were all set up, I checked my email and received the devastating news.  Kate, from our Brenner's family has relapsed and is being sent home on hospice.

Two years ago, at the age of 3, Kate was diagnosed with leukemia (ALL).  Treatment was tough on Kate and she suffered many debilitating side effects and infections.  She made it through to maintenance and sadly, last February, was diagnosed with a relapse.  She would need a bone marrow transplant to survive, but she needed to be rid of the cancer cells first.  Her family was offered hospice, but they found out about an experimental drug in Italy- Kate's Italian Kryptonite.  Kate's devoted prayer warriors, her medical team, her wonder drug, and her amazing God got her to transplant at Duke.  On May 18th she received bone marrow from her brother Jarod.  Kate has had a very rough summer, but was one week away from reaching her 100 day mark when the relapse was found.

There is nothing more medicine can offer Kate.  She has been sent home on hospice to be with her family as her condition deteriorates.  Kate is one of 5 children.  This family has faced unimaginable challenges.  Mom, Susan, was pregnant with baby Bella when Kate was diagnosed.  Baby Bella lived on the oncology floor for the first few months of life and for the past year has had to be away from her mother.  The family has been completely torn in two for the past 2 years.  They live in a 1200 square floor house that barely fits their family of seven.  They were one of the final two families considered last year for ABCs Extreme Makeover Home Edition, but the house went to another deserving family.  At the tender age of 5, Kate has already reached her $1 million dollar cap for health insurance and the bills are piling up.  The family is now unable to buy a new home.  Sweet Kate does not even have a bedroom or bed of her own to come home to.  A foundation has been set up to secure a home for this family.  If you feel lead, please help in any way you can.  And please lift up Joe, Susan, Jarod, Parker, Julia Faith, Bella, and princess Kate in prayer.  We believe in God's miracles! We ask that He carry each one of them through each and every moment of the coming days.
   
So my heart is broken, both literally and figuratively.

Thank you for the love, prayers, and support for us and all those we hold dear.

Feeney's Fans

Okay, confession time.  I am totally hooked on...

They just opened a store 2 miles from our house, right next to our bank and grocery store.  Sadly, I haven't even needed to use those as an excuse.  They opened last weekend and were giving away free frozen yogurt to everyone.  We happily waited in the 20 min line and would have done it again! It is an adorable store, like a party...

Their frozen yogurt is delicious! They make 10 flavors each day and have a topping bar of 50 items from fresh farmer's market peaches to heath bars to hot fudge.  And everything in between.  The flavors choices are so unique and it's good for you! Low or nonfat, probiotics, active cultures and less than 100 calories a serving.  The great part is you pay by weight.  The four of us can make our own sundaes for less than $10!

Julia didn't even make it to the register before ashe stopped for a taste...

Mmmmmm!

We love us some Feeney's! I have to confess I have had it every day this week.  It started with free yogurt, then I became their friend on FB and receive the daily flavors, then I discovered the $2-to-go freezer! Yikes! I have not regretted a single taste so far.  I love the Key Lime Tart, Peanut Butter Cheesecake, Triple Chocolate, Hazlenut Cappucino, Pink Lemonade, and Pistachio Nut.

So if you're ever heading to Feeney's and want company, I'll meet you there (if I'm not there already!).

A New GI Plan

We have made a step in the right direction with Julia (I hope!!).  Its been a rough week, very little success with her meds, and hours of time put in trying to make something work.  We were really getting frustrated with all of it.  She did not go to the bathroom for several days in a row and every day we knew things were getting worse.  The frustrating part about having these issues is that every day we are not successful makes the situation worse and the cumulative effect is dangerous.  It's not something we can ignore, yet so often we feel completely powerless. 

I started calling her doctors mid week to see if there was something else we could do.  It takes a while to get anywhere. A series of leaving messages, nurses calling back to take notes, then waiting for the doctors verdict.  During this time you pretty much have to live married to your phone because missing the call means back to voicemail phone tag.  And you know the phone always rings as you run to the bathroom, unload the car, or run upstairs to get something.

Thursday night I received a call from Diane, the chemo nurse practitioner from pediatric oncology.  (She plays the role of the doctor during the weekly chemo treatments in the clinic and knows us and our situation well.)  She was very concerned with what is happening with Julia.  She agrees this is a quality of life issue and serious problem.  We are obviously not addressing the real problem yet.  She listened for a long time and really wanted to figure out the best plan.  At this point she is sending emails to 2 GI doctors, a long-term survivor oncology doctor, and Dr. McMullen- Julia's radiation oncologist.  I am very interested to see what Dr. McMullen has to say.  If anyone has seen, heard, or read about bowel damage from radiation it would be him.

Then next day GI did call back.  They are sending Julia to the gastrointestinal motility doctors.  We are awaiting their phone call early next week.  They will begin with manometry tests.  These will check the pressures and muscle strength of her lower GI tract.  I am not sure what other tests they are considering, but here is a link to the commonly used ones if you are interested.  They have called in prescription sedatives for us to give her, but at this point we are still awaiting a date for when all this will happen.  We pray that these tests lead us to the real issue and help the doctors to come up with a plan for treating her.  We realize this still may require years of healing, but we need a plan for the short term while we are waiting.

In the meantime GI has given us the go ahead to use the Dulcolax suppositories until the new team takes over.  So we can at least relax a little that we are doing something.  Though at this point they are not working as well as they did previously which concerns mean that she is getting impacted again.  Poor Julia.  I still hate that she is having to deal with this.  The older she gets the more self conscious all of it makes her.  She has had more and more comments from other kids lately.  Not malicious, just curious and it is beginning to upset her.  We are anxiously anticipating finally getting an answer, but cautious and hesitant, that we have to be prepared for whatever they find.  As much as we want this to be fixable and quick, we know that is not guaranteed or likely.

She has been handling it all like a trooper.  This past week she has taken to living in a leopard print dance costume.  She found it in the playroom and started requesting to wear it over her pajamas.  I obliged and soon she was wearing it during the day, too.  It wouldn't be my first choice, but hey if she likes it I can live with it.  Your only four once.  I do wonder how she can stand the velour fabric when it's 100 degrees everyday, but she hasn't complained.  So if you see a curly blonde leopard around town, that's JuJu...

Help Camp Brenner Cancer Kids

Just recently, a group of parents from Brenners' 9th floor joined forces, hearts, and minds to form a non-profit to help improve the experience of families on the floor facing cancer.  I had the privilege of being asked to join the board this summer and can't wait to get even more involved in life at Camp Brenner.  This place is a second home to all of us and the doctors, nurses, volunteers, staff, specialists, and families have become our cancer family.  It is a family we will always hold dear and a place we are always welcome and understood.

For the families going through cancer treatment there are many physical and financial needs.  When your child is in treatment for months or even years, the needs are great.  And as much as we all love our hospital there are always needs and things that need to be fixed or changed.  Most recently it has been the large number of TVs and DVD players that have broken.  Going through chemo and weeks in the hospital without a television is unthinkable.  The foundation has made the commitment to identify the needs, reach out to the families, deal with the bureaucracy, and dig through miles of red tape and restrictions.  But to make this happen we need funds and the support of everyone who cares about these kids.

This Monday we are having a fundraiser at THE LOOP in KERNERSVILLE.  A portion of their proceeds will go directly to the foundation.  There will also be several Camp Brenner families there.  We would love to see you there!

The Loop Grill

1030 S. Main St

Kernersville, NC

August 23rd

5-10pm

www.kidsofchildhoodcancer.org

   

Lemonade for Lily (and all the Courageous Cancer Kids)

When it comes to raising money for pediatric cancer research, three organizations clearly top the list: CureSearch, St. Baldrick's, and...

This Saturday there is an event being held locally to honor one of our own Camp Brenner kids...

 

Price Nursery will host

Alex's Lemonade Stand

In Honor of Lily Blackman

Saturday, August 21st from

12:30-2:00 pm

We will also offer

Hawaiian Ice

&

Homemade Baked goods...while they last!

COME BY...COOL OFF and HELP BEAT CHILDHOOD CANCER

In the Hot Seat

Carter is definitely my thinker and analyzer.  This kid never shuts his brain off and has a memory like a steel trap.  Lately he has been on a question-asking kick.  It really kicks in when we're driving.  I feel like I'm on trial some days! He shoots them out in rapid-fire succession.  This was his side of the script from one 3-mile stretch of road the other day...
 

What are they building over there? 

Why are all the trucks here, but not working?

What are they trying to do to it?

Why?

Why?

So then what are they doing now?

How many miles from the sun is Mars?

If you are a teacher, why don't you know?

Why?

Then what do you know?

Tell me.

What would happen if a car went off the exit ramp?

How much does a truck weigh?

Why don't fire trucks and ambulances just stay together?

Where are all the EMS dispatch stations?

Why do they call it Happy Harbor?

How do they now it's a harbor and not a bay?

What's the difference?

Who says?
Is Britain still one of our allies?
Who are all our other allies?
Then who are our enemies?
What are all their names?
Why does the SR-71 have special plates on the outside?
What are all the types of ordnance it uses?

What is the temperature on Venus?

Why don't you know that either?

I feel bad, but there are times I have to close up shop and put up the "gone to lunch" sign.  He's giving my mommy brain cells quite a workout! I'm going to have to start studying more!