PA Trip: Part 2

My cousin Erin and her husband Michael brought their new son home to meet the family.

Introducing precious little Liam...

He was a wonderful reason to celebrate and to get everyone together. We had a houseful of family and friends and enjoyed some sweet time together.

Michael and Erin, with proud grandparents (Joanne and Jeff), and Aunt Nicole...

They wanted to baptize Liam in the church that Erin grew up in.  It just happens that the minister who had been at the church when Erin was younger, just happened to be in town (from CA!) to do a wedding and the current minister was away for the weekend.  He was able to perform the ceremony and service.  God is in all the details.

The happy family on an exciting day...

Carter was happy to finally have a turn to hold the baby.  Seems like just the other day that he was the baby being passed around the family.

Welcome little Liam! We are so happy to have you in the family and excited to watch you grow in your walk with the Lord.  You brought everyone together this weekend to celebrate the gift of life, the bonds of family, the love of God, and the promises of heaven.  I pray you always feel loved and blessed as a part of our family, but more importantly as part of God's family.

PA Trip: Part 1

The kids and I went up to PA this month for some very special time with family.  My Pappy was turning 80, my Uncle Jeff has recently reached the end of his treatment options with cancer, and my cousin Erin and her husband Michale were bringing their new son to meet the family and be baptized. It was going to be a busy, but family-filled time.

Our first night there, Mimi and Carter were up in the sewing room crafting away.  He decided he wants a colonial soldier costume and he took his imaginative pleas to the right place.  He an Mimi closed the local Joann's fabrics and were sewing that night trying to come up with just the right combinations of patterns...

The weather was beautiful and fall-like. Perfect for some football!

 

 and tree climbing...

The kids love the basketball hoop in the yard. 

Julia has just really gotten into shooting and is getting the patience to really try.  I caught a glimpse of them out the window and my heart just melted watching him give her lessons. He patiently talked her through each shot, encouraged her, and then fetched the ball.

They couldn't wait to see their cousin Anderson again, too.  In typical Anderson-style he kept us all smiling. He was given two rules from his last visit "don't ring the bell" and "don't pick the flowers".  Now how can you possibly say "no" to this face?!

Or these faces?

They were so excited to help get everything ready for Pappy's 80th birthday party.  They made cards and got the cake ready. Pappy had no idea his granddaughters and great-grandchildren were coming and we were excited to all surprise him!

It was a fun night with lots of yummy food, laughs, sweet sentiments, and cuteness from the kids.

Happy Birthday Pappy! So blessed to share this milestone with you.  Happy you could spend the day surrounded by your three little loves!

The next morning... still picking flowers! and looking cute about it!

Now they are all getting in on the act!

This time they had an excuse.  Their cousin Kelsey was coming over and her three little admirers were making her bouquet love offerings :)

Hangin' out at the playground...

 Some people just have rhythm, some don't.  This little man is full of it and makes me smile to no end :)

Classical Conversations

This year, in our ongoing homeschooling adventure, we have joined a Classical Conversations group. CC, for short, is a group of homeschooling families who meet once a week.  We follow a classical model of education and in addition to our regular subjects at home, study specific information for each week. We teach our children the tools of learning as they proceed through the grammar, rhetorical, and logical stages. Our CC curriculum includes math, science, English grammar, Latin, history, geography, fine arts, and presentation skills.

"First day of school" picture...

Carter: 2nd grade, Julia: Kindergarten

Julia getting excited about her drawing...

Carter's class looking at the skeleton and learning the names of the bones.

Kids assembling the skeleton with a series of x-rays.

Reciting their American history memory work while having their own Boston Tea Party...

Carter's history presentation on Iwo Jima...

Learning about how tendons work manipulating actual chicken feet...

Learning about how the nervous system send messages...

Exploring sheep brains.  (It was very interesting that all the girls jumped right in and the boys all stood back)...

We have had a great first month and the kids are learning so much already.  We are excited to be a part of this group and are looking forward to many more learning adventures and fun memories ahead!

Out of the (whiny) Mouths of Babes

To say Julia has been a little emotional the past few months would be an understatement.  Now it is completely understandable (and the reason she regularly sees a counselor specializing in children of life threatening illness) and she has very good reasons to have "big feelings", but at the same time we are trying really hard to break her of the whining habit.  She spent her entire 3 year old year receiving chemo and fighting cancer.  If you have ever spent much time with, change that, if you have ever spent 5 minutes with a 3 year old you know they defer to this painful form of communication with the greatest of ease.  As she has suffered through chemo, pain, side effects, and surgeries it has pushed my patience and compassion to its limits more times than I want to admit.  I have asked her and God for lots of forgiveness over the past few years... and yesterday.

We have been working hard to give her better tools to cope with her big feelings and to get rid of the whining for good.  Recently it seems to have come back full force and she is using it for every reason and feeling she is having.  It is about to make us all crazy.

As we left the grocery store the other day, it started to pour.  The kids had both brought in their umbrellas when they heard the thunder as we arrived.  As we approached the van Julia says, "Let's not use our umbrellas and just run."  Sounds good to me.  She then proceeds to trip and fall.  I helped her up, assessed her skinned knees, offered my sympathy, put her in the car, and fixed up her scrapes.  After the initial crying was over, she would not stop whining and complaining.  As I stood in the rain waiting for her to finally buckle in her car seat, she began screaming at Carter that it was his fault.  I told her Carter had nothing to do with it and it was an accident.  Her tirade continued. I talked about accidents and how they happen to all of us.  Then I calmly asked her if it actually made the pain of her knees feel better to blame Carter.

She got quiet and thought for a moment.  "Why yes, Mom it actually does."

Back to the drawing board.  

Make A Wish Reunion

A few weekends ago we had the privilege of attending our local Make A Wish reunion at Carowinds.  It was a beautiful sunny day...

We had fun visiting with friends and enjoying the rides.

The kids loved all the rides.

And are still very daring.

They are happy to ride the kiddie rides, but also ride everything they are tall enough for from kid roller coasters to the full-size adult ones with their little feet dangling in the air.

Thanks Make a Wish! Wonderful memories of our wish trip and many happy smiles today!

National Childhood Cancer Day ...and Mackenzie

Today we remember all those fighting in the trenches of cancer, all those angels who have earned their wings, and all those survivors who carry their scars and move forward each day with hope for the future.  We are wearing our shirts...

This picture was drawn by another Wilms' Warrior- Mackenzie, age 6.  Here is her story, in her mother's words...

Madyson and Mackenzie were born that morning. Madyson arrived at 3:24am and shortly after at 3:53am Mackenzie was born. Twins. Born into the state foster care system. They were the 15th and 16th babies this birth mom had delivered. All of the surviving children were adopted years before. The phone call continued. “ The bigger one is being discharged tomorrow and the little one will have to stay for awhile. If you would like, you could take just one” Seriously?? How could twins be split up? Who could do that? The state foster system could do that because there are never enough foster parents and placing one child is easier than placing two. They said they would give me 40 minutes or so to call them back because they really needed to secure a placement for the baby being discharged. Our lives were changed forever. Within 7 weeks, adoption papers were signed and they were baptized at Guardian Angels on June 24, 2001.

Mackenzie was diagnosed with a Wilms Tumor on April 5, 2006- a few weeks before her 5th birthday. Her tumor pathology was Stage 2- favorable histology. She had her left kidney removed and completed 18 weeks of chemotherapy without any complications. During her off treatment scans we found out that a new tumor was growing in the left kidney bed. We also found out that our hospital had not sent her tumor to the Central Review lab and she had been initially misdiagnosed. Her tumor was actually Stage 3- Anaplasia. She should have received more aggressive chemo along with radiation. 

Mackenzie finished the correct protocol in February 2007 but we were told that not treating her properly upon diagnosis could affect her chances of a cure. It was recommended that we switch to a children's hospital, so we did. In August 2007, Mackenzie's 6 month off treatment scans were clear or so we were told. Within 3 weeks, she had an inoperable tumor in her abdomen. Upon reviewing the August scan it was clear that a 5 x 5 cm tumor was missed by the radiologist. Another hospital and another mistake. This mistake would be the begining of trying to shrink a very large mass. Mackenzie endured months of high dose chemo only to eventually find out that the surgeon could not remove the tumor. It eventually started to grow again and our beautiful daughter took her place in eternal bliss. Our hearts will always ache and our lives will never be the same without Mackenzie.

I think back on that day often and how one phone call and one decision changed the course of our lives. Was it just meant to be? Was this God’s perfect plan that I routinely question now? How does a perfect plan involve so much sadness and loss? I suppose one day I will have all of those answers that I need until then I have no choice but to trust that He knows what is best. 

So how could twins be split up?? Cancer splits up twins.

Mackenzie drew the picture on our shirts just days before she earned her angel wings.  


So today we carry the torch forward for Mackenzie and all the other Wilms' Warriors who have fought with ALL they have.  It is because of so many children and their families that we have the protocols we use today.  Cancer research is not perfected in the lab, it is done on children.  The thousands who have gone before are true heroes to those of us faced with this disease.  They have endured the protocols and been the data.  They deserve purple hearts for their brave sacrifice and courage.  The least we can do is continue the fight, pray and support their families, and share their stories.  

Remembering...

It is hard to believe 10 years have gone by since that infamous day.

When our worst nightmares became reality right in front of our eyes. I will never forget where I was and how that day felt.  At the time I was working 80 hour weeks as a nanny for two families.  I just happened to be off and was home that day, watching the news as everything happened live.  It was surreal to see it with my own eyes and try to believe what was happening and it just kept getting worse with each of the planes in NYC, then the Pentagon, and finally PA.  The trauma, suffering, fear, terror, and mass deaths were too much to take in.  As the day went on the news even more grim.  As we witnessed all this loss, our national security was stripped away and we were left to wonder what was next. The world would never be the same. The scars of the responders, the families, the witnesses, and the nation cut so deep. 

And for many they will always remain.

I lost a college classmate in the World Trade Center attacks that day.  Jim Reilly and I had done our sociology senior project together.  I had first met him through my roommates.  He was one of those people you were immediately drawn to by his smile, sparkling eyes, contagious laugh, and charm.  He had everything going for him- intelligence, athletics, family man, amazing friend, and great person. A NY native, he lived in Manhattan and worked on the 89th floor of the South Tower.  He had reassured all his friends and family he was okay.... then the second plane hit.

Today I stop to remember Jim and his family.  They represent the thousands whose lives were stolen that day.  I pray they are all able to find peace to move forward and real HOPE in the God who has already conquered the grave and who extends to each of us the only real security and assurance in this life.  

The Cost of a Cure

Of the 46 children diagnosed with cancer every day (13,500 every year), 1 in 5 will die and 3 in 5 will develop long term complications.  

Crummy odds if you ask me. And it only gets worse with time.

"By the time (childhood cancer) survivors are 30 years out from their cancer diagnosis, however, almost 75 percent of them have a chronic health problem and 42 percent die or have severe life-threatening conditions." 

This is The Dark Side of Being Cured From Childhood Cancer. 

The treatments for kids' cancers are often referred to as "cut, burn, and poison".  These refer to surgery, radiation, and chemotherapy.  Sadly, for the vast majority of kids this is all medical science has to offer... 40+ year old solutions.  In the majority of pediatric cancer deaths it is the "cures" themselves that take children's lives.  The cancer is not the primary cause of death. And these are not optional treatments.  Parents who decide not to follow traditional medicine can be prosecuted.  Most of the chemo drugs used in children are scaled down doses of adult drugs.  They are not tested in or created for children, but they are all we have because of the lack of research funding.  It makes no sense.  If your infant gets a cold do you give them a small dose of nyquil? These days, you can't even give them pediatric cold formulas.  But when cancer comes on the scene the rule book goes out the window.

I think about this almost daily.  Our kids need better options.  Safer options.  Julia is one of those "3 in 5" left with long term complications from her treatments. She has had 7 surgeries since she was diagnosed with cancer.  Four of those have been since she was off treatment.  Her most difficult hospitalizations, complications, trauma, and emotional struggles have all been off treatment.  It shouldn't have to be this way.  Last week we had to treat Julia's granulation tissue again.  Her surgeon decided to let us start doing it ourselves at home so we could make it as easy as possible on her.  We were given the medication we needed to sedate her at home to help minimize the trauma for her.  It has been a process of trial and error trying to find a medicine that works.  We have not had a lot of success.  After I did some research into all her past hospital sedations and drug dosages (shout-out to our onc clinic for looking up all the data for me in her records!)We were optimistic this recent time would be better.

Now there is something just wrong about having to sedate your own child.  The crushing, mixing, calibrating, adjusting for new weights and heights, prepping Julia for what I'm about to do, and then monitoring her throughout the process and for the next 24 hours afterward just feels so nuts.  All part of being a momcologist, I guess. I can't say that fear is not there every time and the anger at cancer. I gave her the meds and put on her emla.

In about 45 minutes she was out.

She woke up when we started using the silver nitrate, but her ability to fight back was much less.  She did grab the stick at one point to "help" and apparently got my arm.

But in the grand scheme of things, 3 tiny burns is about 10,000 times less than what I've inflicted on her recently with all the medical procedures I've had to do. Just another reminder.

We NEED better treatments for our kids.  We need more research.  Want to help? Find a CureSearch event near you and walk for the kids.  Or join our team and help as Julia walks for better cures for herself and her friends.  In the pediatric cancer world, the kids fighting cancer and their families have to raise their own research funding, but if we don't nobody will.  If we don't make our voices heard, the ignorant silence will continue. And so we walk.

Back to Brenners

We made a couple trips back to the hospital recently.  It feels like it's been a long time.  We have been having some trouble with Julia's nightly cecostomy flushes not working. After her urology appointment and several calls to her GI nurse, Dr. Fortunato's office called and said he wanted to see us as soon as possible.   I wasn't really sure what his possible solutions might be and decided not to think about it.

Julia had such a treat when we arrived at the hospital.  We stopped in to see Ms. Betsey and Julia had the art table all to herself.  Ms. Betsey and Ms. Stacy, AND art- what could be better? It was great to catch up and hang out with two of our favorite people.

Julia made this really amazing fish with foil, sharpies, watercolors, salt, and water...

After lunch, we headed to the peds clinic.  Dr. Fortunato had good news.  He said he is not overly concerned by this setback.  It happens.  Overall he is pleased that she is adjusting so well to this new life.  He said his 5 and 6 year old girls are his best cecostomy patients right now.  He is going to keep her on the doubled dose for the next six months.  If we start to have more than one night a week that the procedure fails, then we will switch to a different solution- Golytely. 

He was very excited that she has been potty trained over the summer and was happy with how far she has come in the past year. We paused to celebrate progress.  Still not where we hope to be, but progress.

We also had another Lego Therapy Night at the hospital.  This has become something we all look forward to every month. It is so much fun and a great opportunity to connect with our friends- old and new. 

Carter and Vinny were completely in their element- legos, Star Wars, and friends.  They arranged to wear their new matching shirts to the event...

Julia's creation- a swimming pool and fountain...

It's great to see everyone get in on the fun- adults and kids alike.

And when the one of the Master Builders is a college age guy, there will be light saber duels.  He built one for both the boys. Let the battles begin!

It was a great night with some fun and sweet fellowship.