Playgroup Christmas

Friday morning was our annual Playgroup Christmas Party.  We have been hosting playgroup at our house every Thursday for over 5 years.  We've hardly missed a week.  They've even had it at our house a few times when I wasn't even in town! I love these girls and kids dearly.  They are our framily (friends who become like family).  When Julia was diagnosed we had to stop hosting.  Thankfully the group has continued at others' houses until we can do it again.  We have so missed seeing everyone.  It has left such a void in our hearts and lives.  We decided to celebrate Christmas with the ones we love.  Julia was very hesitant and spent most of the time in a room alone or just playing with one friend.  It's going to take a while for her to readjust socially. 

When the group started we had 4 babies.  We now have 22 kids and another on the way....  

Here's the youngest of the bunch...

It was crazy, but so much fun- truly an all-hands on deck situation.  We made angel ornaments, read Christmas stories, told the nativity story, sang songs, and played instruments.  There was actually several minutes of total silence- when they were all eating...

 

After lunch, it started to snow...

 

The kids were giddy with excitement to get outside.  There's nothing better than surprise snow at your Christmas party and the chance to play in it with your friends!

 

 

Poor Heather was supervising and got tackled by the crowd.

"Hurry Heather, run!"

 

Daddy came home from work early and he and Carter made a snowman.  Such a peaceful night.  There is nothing quite like falling snow to quiet your life and heart.

 

Julia was happy to eat the snowball they brought her...

 

So it looks like our travel plans may be on hold...

Julia's Namesake Part 2

....continued from my earlier post about Julia's name.

We've known as long as we've been married that if we were ever blessed with a little girl, her middle name would be Meredith.

Meredith is Billy's mother's name.  She was a loving mother of four, wife, grandmother of four (now ten), labor/delivery and newborn nurse, dedicated Christian, and compassionate friend.

In September of 2000 she was diagnosed with inflammatory breast cancer- a rare and aggressive form of cancer that makes up less than 5% of breast cancer diagnoses.  She underwent surgery, chemotherapy, and the day after Christmas- a radical mastectomy to battle this beast.  She was in remission in the new year and praying for good health.

Billy and I were in a serious relationship by this point and he wanted me to meet his family.  We made plans to spend Easter with them.  The week before our trip his mom was diagnosed with leptomeningial carcinoma.  The cancer had spread to her brain.  At this point there is very little that can be done.  And this was the first time I had the chance to meet her.  It was an emotional, stressful, and confusing time for everyone.  She decided to try treatment which meant chemo to the spinal fluid and surgery to install a shunt in her head for chemo treatments.  It was a very difficult process of painful headaches, nausea, loss of vision, and many other horrible symptoms and side effects. 

Despite my living a state away and Billy living three hours from them, we decided to spend every weekend visiting to spend as much time with her as we could.  It was heartbreaking how quickly we were losing her right before our eyes.  I hated seeing her suffering so much.  I desperately wanted the chance to get to know her.  We had a few conversations that I will always hold dear.  We knew her time was limited.

They brought her home to live out her last days on June 20th, 2001- our shared birthday.  She and I had several things in common besides the same birthday we also share the same heart condition, the same love for babies, devotion to our families, doll collections, and faith in God.  It was a birthday I will never forget.  The whole family was there and the pastor came by to visit.  We had a sweet time of worship around her bed and they had a cake to wish me happy birthday.  We spent the next five days caring for her as she slowly left this world.  It still breaks my heart that the most time I spent with her was on her deathbed.  I feel privileged to have been able to care for her though.  The family took turns caring for her.  I would hold her hands, talk to her, sing, and pray. As I would talk she would put her hand over my heart, unable to respond.  It always touched me that the same thing that comforts us in the beginning of our lives comforts us at the end.

These are hands that have touched so many lives with their simple love and compassion.

Little did we know when we chose Julia's name that her two precious angels who fought cancer with such grace would be watching over her while she fought the same battle.

How's Julia?

I've had many people asking recently how Julia is doing these days.  It seems weird not to be writing about her health on a regular basis.  I am thankful to say that it is for good reasons... there has been little news.  She is doing well.  Recovering from cancer, surgery, radiation, and chemo is a long process.  There are certain benchmarks, but a lot of it is individual to each child.  We have just been riding out the time patiently watching to see what happens.  We were told to expect six months to see her at a more normal functioning level.

Her blood counts are still holding about the same as October.  Her white blood count is actually down (3.1) from where it was post treatment.  Her lymphocyte percentage is increasing which allows the white blood cells to do their job.  When I was talking to Nurse Nancy on the phone she mentioned this could be a permanent side effect of chemo treatment.  We are learning new things every day.  No one ever mentioned that before. When you are facing cancer in the heat of the initial battle, long term effects are a consideration, but usually an afterthought.  Now we are at the point where we have more time to really think about them and wonder what lies ahead.

The same is true or the scans she's had.  You've probably heard the recent reports about the extreme danger of radiation exposure from CT scans (it causes 29.000 cancers and 15,000 deaths each year).  Do you know how much this makes you want to scream as a parent?! I felt sick having to subject her to it and now my fears are confirmed.  When they find a tumor in your child, they have to find out if and where it has spread; which means a CT scan.  There's no other choice.  Julia had her chest, abdomen, and pelvis scanned.  In some ways now I am thankful she did not make it into the clinical trial because it would have required additional CTs.  It was hard enough to have to subject her to daily flank radiation therapy.  We still do not know the long term effects of her treatment on her fertility, etc.  Only time will tell.  It is so hard to see these cards stacked against your child.  We live in a fallen world and most of us at some point in our lives will succumb to some sort of disease, but to see it happen to a child is heartbreaking.

At this point the effects we are still seeing are mostly in her digestive tract.  Her appetite, tastes, and eating habits have made a complete turn around, but are still a work in progress.  On a positive note Carter has been cleaning his plate at every meal for weeks! So at least only one of them has food issues for a while. Her bowel issues have been the biggest problem.  She made it through most of chemo with only mild trouble, but started having regular issues the last few weeks of treatment.  It has persisted now for the past 10 weeks without much help from her medication.  Nurse Nancy and Dr. Wofford came up with a new plan this morning and we pray it works for her.

Her energy levels have continued to increase and her endurance is much higher than it was before.  Her color looks good and she has filled out back to her normal shape again.  She has had a bit of a runny nose this week which has brought on the whining in full force.  In some ways it has been a good reminder for me of just how far we have come in a short time.  She used to whine and cry much of the day from feeling so bad.  Now it seems out of the ordinary what a blessing!

She is continuing to enjoy the magic and joy of Christmas.  It is such a gift to be feeling better this time of year.  She is feeling so alive, well, and happy.

As she continues to heal, she is processing everything that's happened to her.  She has asked some tough questions along the way, that usually come out of the blue and catch me totally by surprise...

• How long do I have to keep going to the hospital?
• Do you remember when my port was broken and Nurse Nancy and Nurse Karen had to fix it?
• Does the whole world get cancer?
• This line (her scar) is where they always want to scan me.
• Will I have to get any more chemo?
• Nurse Karen can help all the other kids get better now.  That's what they do on their computers.
• God heals everyone.  That's His job. 
• Why does everyone call me a boy? When am I going to get my pigtails back?

I'm so happy she's finally talking about it more, but I hate that I can't answer her questions.  Only God knows the future and I know with every ounce of my being that I would not what it any other way.  We know we have today and we are all healthy and in that we can rest and be thankful.

Out of the Mouths of Babes

When Julia says the blessing, she always ends with...

 "...thank you for our maybe blessings and our maybe friends..."
             (many blessings and many friends)

While eating breakfast...
      Julia:  "How do you make french toast?"
      Carter:  "You take some toast and dip it in.... some french?"

Can It Really Be?

...only a week to go?! In 3 days we leave for 2 weeks...Oh my! I need to get my act together.

Gifts for Jesus

We had the honor and privilege of attending a Birthday Party for Jesus at Daystar Christian Fellowship this past weekend.  The families came out to celebrate Jesus' birthday.  They each brought Him gifts to benefit the Brenner's Oncology clinic playroom and Arts for Life.

The children made fun crafts, played games, enjoyed cupcakes, listened to stories,

and we opened the gifts.  I always get emotional when I share our experience.  Each time I say it I think it becomes even more real in our hearts.  It seems strange to say, but at times it feel like this all just happened and I have trouble believing we are a part of the pediatric cancer family.  As I'm sharing about the clinic and what goes on, it's like hearing it for the first time.  It takes a lot of prayer to even be able to do it.

We were so overwhelmed by the generosity of these families.  Julia and Carter opened the gifts on behalf of Brenners and showed them off to the crowd.  It is so touching to see how excited all the kids get about every item, even though none of it was for them.  And we had the privilege of sharing exactly how all of these things would be used.  In the end there were three baskets overflowing with gifts!  

Monday morning we got to be the happy elves and deliver the gifts.  The kids were so excited.  Julia told us she would show Ms. Kathy who the kids were with cancer because they were all her friends.  The staff was thrilled when they saw everything.  (Julia loved her extra hugs from Nurse Karen!)  These gifts will be used by so many deserving kids.  It is so humbling to see the ways God is working through our experiences and we are so touched to be able to witness some of that first hand. 

While we were there we ran into Mason and his mom Jessica.  She came running down the hall to give me a hug.  We went through so much when our kids were in radiation together.  Mason is doing great and has 7 more treatments left for his rhabdomyosarcoma.  Please pray his treatment is effective and he is NED for life.  We also saw Lily and her mom Ashton. 

We pray everyone has a healthy and joyful Christmas (out of the hospital)!

Go Navy, Beat Army!

Needless to say, Carter was really into the Army-Navy game this year.  Grandpa is USNA class of '73 and we lived in Annapolis much of my childhood, so our loyalty runs deep.  He is intrigued by all the tradition surrounding the game and was on the edge of his seat.  I have to say he did do his pushups for every point (and one to beat Army) throughout the game.  Navy 17, Army 3

Carter joined them at the end of the game the alma maters of the losing team and then the winning team are played and sung. The winning team stands alongside the losing team and faces the losing academy students; then the losing team accompanies the winning team, facing their students. This is done in a show of mutual respect and solidarity.