Out of the Mouths of Babes...

The kids play has been in full swing this week.  One look around our house and you will see.  They have so many scenarios in the mix and want to leave up their creations to play the next day.  I have loved being a fly on the wall for their conversations.

Here are some of the tidbits that made me smile....

Julia: "Let's pretend to be people.  And we can go camping!"

While playing hospital/ambulance......

Julia:  "Carter don't carry baby Mia that way.  You'll hurt her really bad and she'll have to spend like 10 whole extra minutes in the hospital!"

Carter:  "I have 6 doctors and 7 nurses.  Three of my patients have the flu and 4 of them have the swine flu."

Carter:  "The Penn State lion is hurt really bad.  He had a weightlifting accident and the pole broke the bone in his throat (he listens intently when watching ESPN).  So hurry up!"

Pigtail Prayers

We've been having a good week.  The arrival of fall has been a welcome gift.  I love this time of year when the skies are bright blue and the world appears in bright technicolor.  I love the cool, crisp air coming in the windows.  I love the changing leaves, pumpkin patches, savory soups, football games, fall festivals, and jeans. 

We've had some time to play with friends this week which is always healing for all of us.  There was lots of squealing, giggles, and laughter which is music to my ears.  Julia has been feeling better this week.  She is getting back some of her sassy spunk which leads me to believe she feels a little better.  She still struggles with eating, but has had more success.  I must admit it doesn't even phase me to fill her request for ice cream at 7:30am.  Whatever works.  She went on to eat peanut butter toast, so at least it gets better.

I have a whole new appreciation for the drive-thru these days.  I am keenly aware of what services I can take advantage of from the inside of our car- banks, groceries, pharmacies, fast food, ice cream, library books, Goodwill donations, etc.  It is a fabulous thing.  Especially now as the germs settle in and take hold in our county.  (It is starting to seem like everyone is sick.)  It definitely makes life easier and gives us the ability to get things done and feel like we got out of the house.  Sometimes just driving around is great, even if we never get out of the car.  The more illnesses I hear about, the more motivated I am to stick it out and be happy and joyful where we are.

The other night I was sitting with Julia before bed.  She was quiet for awhile and then said, "Mommy, I want pigtails again, like my friends."  She was one of the first of her age friends to have long hair and she fully embraced the pigtails.  We all miss them. 

We don't talk much about her hair anymore.  It is so commonplace to all of us.  It has started to grow in the past month- a soft fuzz all over.  We've been calling her 'Kiwi'.  I love to rub and kiss the top of her soft little head.  I am hesitant to focus on it too much.  She just had doxirubicin and still has another dose of dactonomycin ahead of her, so there's a chance this hair may not stay.  The first growth hair after chemo is usually temporary anyway.

We talked about her hair a little, that the pigtails will come back.  When, is not up to us and I don't even try to guess.  As I was changing her diaper before bed she grabbed the 1/2 inch of hair on either side if her head and said, "Can we pretend these are my pigtails?"  When we said her prayers that night at bedtime, we prayed for pigtails, too.  No, it's not the most important thing, but it matters to her.  I want her to know that her big God who hung the moon and the stars and created the universe cares about little girl pigtails, too.  And it makes it so much easier on all of us to just lay it before Him and let it go.  We can all rest peacefully knowing...

 He's got the WHOLE world in His hands.

 

Cowboys for Kids

Cowboys For Kids

The “Cowboy’s For Kids” are holding another rodeo

to benefit “Kids of Childhood Cancer”,  a non-profit organization

to assist families of children on the 9th floor Oncology Ward 

of Brenners Childrens Hospital.

  The rodeo will be held at “Little Hat Ranch”,

8731 Vanhoy Rd.
Kernersville, NC
Saturday, October 3rd, 2009
From 10:00 AM until the cows come home.

Events include...
(but not limited to):
Home Cooked BBQ
Team Ropin’
Calf Scramble; for the kids
Pony Rides
Mule Wagon Rides
Bake Sale and Cake Walk
Live Country Music
Dancin’
Bon Fire
And Much, Much More!

For Info, Directions, Donations, or Volunteering, 

Please Call Buzz Crews @ 336-996-4206,

if no answer, please leave a message

Also need baked goods for sale and cake walk.
Donations Are Accepted!

Team Unite

So what can you do to show your support of Childhood Cancer Awareness?

Here are 10 things you can do that won't cost anything, but can change everything for someone,

1. Tell everyone you know (and even those you don't know) how you, or someone you love have been touched by childhood cancer.
2. Donate blood.
3. Wear gold for the kids.  Need some?
4. Register to become a bone marrow donor.
5. Offer to volunteer at a local childhood cancer center.
6. Join Team Unite to become part of a unified voice against cancer.
7. Join People Against Childhood Cancer to learn about efforts being made around the country to find a cure, raise awareness, and lend support.
8. Let a family that's been touched by cancer know that you still care and haven't forgotten about their struggles.  Let a family of an angel know their child remains in your heart and thoughts.
9. Sign the CURE CHILDHOOD CANCER petition and ask your friends and family to sign, too!
10. If you live locally in the Piedmont NC, come out to support Cowboys for Kids on Saturday, October 3rd (details coming tomorrow!).
    

Weekend Update

Julia has remained fever-free, but is still feeling pretty yucky.  There's been heaps of crying, whining, and yelling (most of it on her end, the rest of us have asked for forgiveness).  This has been her general position all week...

We have given in and let her eat lots of ice cream the past few days, just because it works.  She also has a hankering for jello jigglers, so we made those, too...

We spent a rainy day inside today and enjoyed some family time, football (Go Wolfies!!), household chores, and fun.

Do you ever have those moments when you look at your kids and wonder how/what/why in the world?!

Today we had one of those with Carter...

The explanation:  He had taken off his pajamas and was getting dressed when he noticed Daddy had out the tools to hang a valance, so he went to the car to get his headphones because the drill is loud, and to put on his USMC socks because he loves those, and to the playroom for his construction hat (safety first), and his hammer to help :)

We've been playing a lot of games, too.  One of the nurses at the hospital got him hooked on LIFE.  He's been begging to play ever since.  It turns out we own it (had NO idea).  We've been having lots of fun with it.  The 40th anniversary edition has actually made a lot of changes from the version we played as kids (no more "sue another player" or gambling, etc.) They really cleaned it up to be family friendly and it is quick to play.  It has also sparked some good discussions about college, savings, insurance, etc.

It also has brought some good laughs.  Carter said the other day, "My wife keeps falling out of the car when I go up the hills!" and when he landed on the 'you have a baby girl' space- he said, "I'll take a boy.  I want a car full of boys, except for my wife."  I told him he had to take what he was given.  He said "that's okay because she comes with a savings bond."  Nice.

Pediatric Cancer

They say ignorance is bliss.

Before my child had cancer, I thought it was something this country cared about.  How many times do you see St. Jude specials on TV, or hear of companies donating to a children's cancer cause, or see a local fundraiser.  It seems common.  I thought it was something people supported and that was well-funded.  After all, who can look at the faces of innocent young children and here their 'war stories' against the cancer beast and not be moved? We are the wealthiest, most technologically advanced nation in the world and these are our children right?

But I was wrong.  Celebrities and adults drive support, funding, and allocation and it the vast majority goes to adult cancers- breast, prostate, colon, and lung.  Children do not have a voice in this process and their families are so overwhelmed by the process.  Who is speaking up for children with cancer?

I actually cringe slightly at October being Breast Cancer Awareness month.  Breast cancer gets the majority of all cancer funding and continues to get even more.  Now please don't hear me say I don't think these are worthy causes.  I DO.  But the scales are tipped way too far.  Of all the funding for cancer research, pediatric cancer only gets 3% of the total.  When you put it all in perspective, children's cancers are getting only pennies.

How many people even know September is Childhood Cancer Awareness Month? How many gold ribbons do you see in proportion to the pink ones? Some of cancer research is broad-reaching and reciprocal among adults and children, but very little.  Any medical professional will tell you children are not small adults.  Not only that, many of the cancers are unique to children. 


A mom of a rhabdoid AT/RT angel baby (Vivienne) summed up some of her frustration...


"This inequality has a direct effect on the treatment of children diagnosed with cancer. New drugs are developed for adult cancers and only later tested to see if they happen to work for childhood cancers too. It is an extremely rare occurrence when a drug is researched, designed and implemented to treat pediatric cancer as its primary goal. By the numbers, the statistics are chilling:

"In fact, of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period."Source: Molecular Cancer Therapeutics, August 2006.

15 new cancer drugs labeled and approved for children over 55 years, compared to 120 for adults. 
We should be ashamed of ourselves."

Not only are children's and adult's cancers completely different, so are the expectations.  A child facing cancer has their entire life ahead of them.  They have not experienced childhood, finished school, gotten married, found a job, had a family, and lived their life.  The effects of these life saving treatments can be devastating- secondary cancers, organ damage and failure, sterility, learning disabilities, nerve damage, etc.  They have so much more at stake.  They want to live long, productive, healthy lives with careers and families.  They want their bodies to work for decades.

There are some amazing possibilities on the horizon.  The newest chemotherapies are targeted and specialized to accomplish specific tasks, as opposed to traditional methods that kill everything in their path.  It's the difference between a guided missile and carpet bombing.  This is essential when dealing with developing and growing children.  The goal is to rid their bodies of cancer while preserving the health of their hearts, brains, bones, lungs, and other organs.  But the money for the research just isn't there.

There are a handful of diseases where the only known treatment options actually cause life threatening disease themselves.  Cancer and autoimmune disease are at the top of this list and the treatments are brutal. This is such a horrible place to be as a parent to have to sign off and okay these poisons to help your child.  One of our dearest family friends is a teenager battling severe ulcerative colitis.  The immunosuppressants and autimmune drugs he takes to control his condition (and avoid a permanent colostomy), also can cause lymphoma.  He's in testing now.  This stinks.

There have to be better options out there for these kids.  But until the researchers get the funding we may never know.   

Childhood cancer is different not just from a health perspective.  Did you know health insurance has a lifetime cap of $1million at which point you become uninsurable?  What happens if you hit yours before you even reach adulthood?  Reaching this cap is nearly impossible to do and most people don't ever have to worry about this unless you fall into two categories... you were born very prematurely or are diagnosed with childhood cancer.

These kids face such an uphill battle.  

Out of the Mouths of Babes...

I love to jot down the funny things the kids say that I want to remember when they're older because I know I can't rely on the brain cells anymore :)

Julia likes to say, "When I get bigger, I'm going to be a..."

This week has been full of them.  Some of my favorites...

• a chef.
• a builder.
• a football player.
• a bird.

And my personal favorite...

• a butter girl.

And what exactly is "a butter girl" you wonder? According to her it is "someone who spreads butter really well".  Can you tell our kids love butter? (We let them spread the Smart Balance on thick because they both eat essentially fat-free diets.)

Today at breakfast she told Daddy he could be a butter girl, too... when he grows up to be a girl like her :)

Thursday Update

We started our day early and actually squeezed in a walk before heading to the hospital.  The exercise was great, but fellowshipping with a dear friend even better :)

Then we got ready to head to Brenners. Carter was offered the last minute opportunity to head to the zoo with friends.  He jumped at it and was beyond excited.  We dropped him off and headed to the hospital.  The clinic was a busy place today.  As soon as we walked in Ms. Dianne and Ms. Tammy both said, "What is the deal with Wednesdays?!" Our sentiments exactly.  Though if we have to pick a day of the week to do this, I'll take a weekday over a weekend any day.

They drew her labs with a finger prick.  She was very happy to not need port access.  Then we waited.  It was actually nice being there.  It's a safe place for us and one of the few places Julia goes these days.  We enjoyed being surrounded by people and kicked back to relax and wait.

Her labs came back and Ms. Tammy brought them out to us.  Everything has dropped since last week, but nothing is dangerously low right now or needs intervention.  Since we were already there and she has been on and off febrile, Dr. McLean wanted to see her.  So we waited another hour.  He was very sweet with her and concerned.  He doesn't see any big red flags.  He still thinks she had a virus last week that she is continuing to fight off.  He wants us to call him tonight if the fever comes back and bring her in for admission and IV antibiotics if she hits 103*



We headed home with a stop at the ChickfilA drive thru on the way.  It was 2pm and we were both starving.  I am happy to say she ate 6 chicken nuggets and lemonade- yay!  We might be going back tomorrow if it means she'll eat :)  We got back to the house to wait for Carter.  Julia played happily for about 20 min, then came out to say, "Where is my brother?" I love that they miss each other when they're apart.  They've played great together all night and been inseparable- so sweet.  I love to hear their little conversations, "How was the zoo today Carter?" and "How was the hospital?"

At this point in their conversation Carter was asking her what is her favorite thing about the Phillies.  Her answer, "The way they smile at me." She's a nut :)

Oh, Hump Day...

Wednesday is apparently not our day.

Julia ran a fever Saturday and Sunday and was fine Monday.  Tuesday night the fever came back- for the third Wednesday in a row.  I called the clinic to see what we should do.  She's due for her weekly labs tomorrow anyway.  This is typically the point (7-10 days) after doxirubicin where all her counts have dropped.  The guess is that her body was fighting a virus last week that lingered over the weekend.  As her counts are dropping, her body has a harder time fighting illness and recovering.  She is not acting like she is acutely sick.

That said, the past two days have been rough.  She has been alternating between whiny and angry (from the chemo).  My compassion limits have been tested for sure.  It is such a roller coaster.  I feel bad for her and my heart aches for what she has to go through.  I know she doesn't fully understand what is happening to her and doesn't have the words to express it.  I reached a point today though where I thought to myself, she can't be allowed to act this way.  It is such an act of trusting God.  How do you discipline and guide a 3 year old on chemo? Minute by minute and by the grace of God seem to be the only answers that work.  Today she was screaming and throwing things at me, refusing to answer, demanding things, etc.  I reached a point, I just kept thinking, 'We have to draw a line somewhere.'  I know she feels horrible, but even when we feel horrible we can't treat people that way.  We're trying to come up with ways for her to get all those feelings out constructively.  I still don't have the answers.

Tonight she reached up to be held and put her head on my shoulder and said, "Mommy I just feel yucky."  I told her I was sorry and the chemo was making her feel yucky.  I am here for her and want to do everything I can to help her feel better.  Poor JuJu.

When we prayed tonight we thanked God for eggs and lemonade popsicles and cheerios and waffles- the four things she finally ate today.  She still complains of being starving and we are having the hardest time getting food in her.  Deciding is a long process, then we make it and she doesn't eat it, then she cries because she's so hungry, then we beg her just try it, then we start over.  Lately she's added to some of her requests, "I promise to eat it." My heart just sinks.  It's like a kick right in the gut because I know she is picking up on our frustration.  But 10 hours a day of this, for months, is draining.  This face just breaks my heart...

And no, the bread that we buttered, that she wanted so much, she didn't eat.  I'm at a loss.  I pray for God to make me cheerful in the face of this frustration, at least for her, because I know in my own flesh I can't do this- only God can.  We also thanked God in our prayers for His mercies that are new EVERY morning and His grace that can cover ALL.  I am definitely in line every morning.

Our days have kind of been this up and down ride.  The kids are getting along great and have had some great moments of play.  They are both fully into pretending and I love to watch them scamper off together into their imaginary realm.  Their relationship is such an endearing and magical thing.  I feel privileged to have front row seats to watch it unfold.  Carter has been doing great with his schoolwork.  He is enthusiastic and diligent and has really made some huge progress lately.  But we are all feeling the effects of being stuck at home.  I feel completely removed from our social circles.  It has been so long since we have been a part of life.  Being with our friends is what fills our tanks.  We are living in the red these days.  The kids miss their friends so much.  Every day they ask who they are going to see and when.  It is really sinking in just how long we will be living this way.  It just isn't worth the risk.  And this is just the beginning of the germ fest.  We know what happens if we do expose her and I want to do everything in our power to keep her out of the hospital and healthy.

 

So tomorrow we will head back to Brenners and see how she looks.  Thanks for listening.  Your thoughts, prayers, cards, and calls mean the world to us.

So Long Summer

I can't believe its the last day of summer already.  Ours just flew by with all of Julia's treatments.  We never thought Summer 2009 would be the summer of cancer for us, but we pray it is our last.  We are excited about the beginning of fall and all the season brings (minus the germs and illnesses!).  One of the wonders of living in NC is that all four seasons have so much to offer.

Sunday was a beautiful day to be outside.  The kids were asking what we were going to do, so I wanted to let them have some fun.  Unfortunately Daddy was the only one who could go to church.  Julia has been running a fever all weekend.  She still seems to be feeling okay and is playing and trying to eat.  She is not at all as sick as she was last Wednesday, so I'm hopeful this is just the end of last week's virus.  We agreed to take her in Monday if she still had a fever then.

I'm so thankful for the online church messages.  Not the same as worship, but the next best thing.  I decided to put the kids in their play clothes and get out the fingerpaints.  They had a ball and went through at least a dozen sheets of paper with their masterpieces.  I don't know which they liked better the fingerpaint or washing their hands in the bucket of soapy water :)

Then they broke out the sidewalk chalk and the water buckets to 'paint' the house.  We found our stash of sidewalk paint from the summer and decided to spread it all out- including the splatter brush Mommy has been hiding.  It has a tip you fill with paint and mash on the patio.  Paint squirts in every direction in an 8 foot radius, making these cool sunburst designs.  I have to admit it was really fun and completely washable/wipeable.  (The folks at Crayola are really cool!)  Then they decided to make a bike wash.  So they drew lanes and made signs on the pation with the paint.  It was really cute and kept them happily playing for quite awhile.  So, time for Mommy to be productive.  We cleaned and put away all the summer toys.  (Julia still doesn't understand why she can't swim anymore.)

(The peppers are almost ready!)

Our sweet neighbors brought over gifts for the kids.  They didn't know she had been sick this week.  They gave her this adorable 'Fever Frog' with a thermometer in his mouth.  When you press his foot, his cheeks turn red, he dances, and sings along to the song "Fever".  It is adorable.  The kids love it and the timing could not be better.  He will definitely be coming along on our future fever stays at the hospital :)

After a quick lunch, Julia went down for a nap.  She still been sleeping a lot as she recovers.  It gave us a chance to get a lot done- mowing, laundry, weeding, meal planning, triple coupons and CVS, cleaning out the garage, and making dinner.  It felt good to finally cross some of these off our list.  All the unknowns lately have left our household routines a mess, so days like this make all the difference.  It's so nice to have things organized when we spend all our time at home.

And no Sunday would be complete without a little football...

Julia woke up fever-free this morning (Monday)- YAY! The kids have had a great day together.  I love watching their relationship grow over time.  They love to pretend together and will play just about anything.  Today they made a pretend surprise birthday party for one of their friends, played with Carter's military men, enjoyed this week's new teaching trays, played doctor's office, played dollhouse, and got out all their cars.

Julia has been feeling pretty good.  The quest for 'something to eat' continues.  We had a few successes today.  She has been whiney, but I think a lot of that is from hunger and just feeling yucky.  She was definitely ready for sleep by nap time, which gave Carter and I some good school time.  It's been frustrating having to start and stop with Julia being sick, but he's taking it in stride and has been very cooperative and enthusiastic lately.  Our school days may not be consistently scheduled and predictable, but they work for us and he's learning and growing.  Thankfully God's grace covers the rest.

I was reminded of that this weekend as I was thinking about their schooling.  I started really working with Carter when he was the age Julia is now.  I was trying to figure out some things we could be working on this fall.  She told me the other night she wanted to write and proceeded to write most of the alphabet.  She now asks me how to spell things and writes them out herself! I never taught her to write her letters.  One of her favorite DVDs to watch at the hospital has been Leapfrog Letter Factory.  Apparently she's a visual learner because seeing them make the letters was all she needed.  And she's already trying to figure out how to sound out words and read, so I think we are safe to wait on the rest for now.  This always happens with their schooling.  It is a humbling reminder for me that even though I am their teacher, I am not in control.  And as hard as that may be at times (especially times I can't make them to do what I'm asking), it is a HUGE blessing.  God is the one in control and I am just a piece of the puzzle.  How freeing!

Sports Saturday

We had a pretty typical Saturday around here- catching up on housework, playing games, and Carter's soccer game.  The three days of rain has stopped and its time to get outside.  I was so excited I was finally going to get to watch him play.  I love kids' sports.  The passion, emotions, comedy, and sportsmanship can't be beat.  He had a great time watching his friends play and playing himself.

Good save, Carter!

Julia is feeling the same as yesterday.  She woke up asking to eat and actually wanted eggs.  I was optimistic that she would eat them and actually feel full for once.  She didn't like the first round (too dark she said), but did eat the second bowl.  I thought we were set until lunch.  Not so fast.  Fifteen minutes later she was hungry.  She asked for spaghetti noodles...not it.  Red peppers.... not it.  Strawberries... not it.  Toast... not it.  Peanut butter... not it.  She finally ate cereal.  Okay, now we're good until lunch.  Nope, still hungry.  She couldn't find anything she wanted.  I made her lunch shortly after and none of it appealed to her.

I must admit I cheated today.  Out of ideas, I suggested Daddy take her on a trip to the drive thru for ice cream- sold.  It worked for a little while.  I also sold out and offered her chocolate chips twice because I knew that would work.  And by the end of the day- after trying dozens of foods... I broke my rule about the pacifier only in the bed and hospital and gave it to her and it works.  Good to know.

Carter's sports day continued when he and Daddy went to see the Wolfpack play in Raleigh.  This is his first college football game and he was beyond excited.  He's had this day marked on his calendar for weeks.

Here he is in front of the Philip Rivers monument- one of his favorite quarterbacks.  He still follows him with the Chargers...

He loved all the game excitement you miss on TV including the marching band with their pregame and halftime show...

 

 One happy little Wolfie...

 

Daddy and Carter sharing their passion for football and all things NC State...

 

 One tired little fan...

 

...he made it through the whole game, three hours past his bedtime.  (Sweet dreams of a Pack win 45-14!)

Julia and I had a fun girls' night in.  She has been learning to write her letters- so we wrote for awhile, painted our toenails, played in the bathtub, ate more chocolate chips, and cuddled on the coach.  She was starting to shake tonight which she does often from the bone and jaw pain from her vincristine.  When I leaned over to kiss her head, she was warm.  The fever is back, 101.7

I called Dr. Wofford and we talked for awhile.  Julia's blood cultures are still negative and her labs were not dangerously low, so as long as she acts okay she said we can wait until tomorrow.  We will reassess in the morning.  The guess is she can't shake the virus she is fighting.

So we wait and pray until morning.

Happy Friday

UPDATE: She took a four hour nap at home and ate poppyseed chicken, garlic croutons, and red pepper dipped in whipped cream (I don't judge, just serve!).  She has been in good spirits all evening.

**********************

Julia had a good night Thursday night.  Daddy and Carter came by to visit.  Carter ran in the room and said, "Hellllooooo sweetie pie!!! Did they figure out what's wrong with you yet? How's my JuJu Punkin?"

He was so cute and sweet to his little sister.  We were happy to see them, but even more excited they brought pizza, lemonade, and fruit- yummy!

Carter and I played some games while Daddy fed Julia and read her books. Then we played some HiHoCheery-O.  Before they left Julia said, "I'm gonna have a popsicle and share it with my brother Carter!" After popsicles they left and it was bedtime.

Julia slept well all night and did not run a fever, so they let us go home this morning as promised.  All her labs and cultures are still clear this morning.  The only one not back is H1N1, but they didn't suspect that one anyway.  So we are free to go.  She will have her labs checked locally next Thursday and will hopefully stay out of the hospital for awhile.  Unfortunately every fever for the next year is going to land us a stay at Camp Brenner.  We were talking about germs with the residents this morning.  I said we were heading back out into the land of bugs and viruses.  She said we were better off because the hospital is full of them, too and they're much scarier- good point.  Thanks for the perspective.

Julia was excited to be leaving and to get her port access out.  She ate all her cheerios and popsicles this morning for breakfast and was in the stroller ready to go.  One of the perks of isolation is you get to keep your stethoscope.  So parting gift in hand we were out the door to go pick up Carter.

I can tell she's feeling better because she's talking more.  With that she is also demanding more and whining more.  I don't know which is better.  Feverish JuJu is quiet, cuddly, likes books and TV.  Post-chemo JuJu is hungry, moody, irritable, emotional, and demanding.  I hate to see her sick and am so thankful God has healed her of this viral fever, but it is easier when she's not hungry because food is such a stumbling block for her these days.  As soon as we got in the stroller she wanted food.  An oreo held her over until we got out to the parking deck, but somehow the second one didn't taste good, like the first  She didn't like any of the snacks in the car and asked for chicken nuggets, until we got there then she didn't want any.  She then decided on a lollipop which we have at home, but apparently the 4 minute ride until we are home is just too much.  She decided on noodles and was very excited until her brother walked in the room and looked at her wrong, which set her off and she refused to eat.  I finally coaxed her into eating them and hoped this would hold us over until naptime.  Then she wanted a banana, but ours are brown.  She fell apart again.  She keeps crying that she's hungry.  We went through everything in the pantry and fridge and she decided on water in a Hello Kitty cup.  Good, I can do that.  So now she is watching TV (for the distraction) until she calms back down and then hopefully taking a nap. 

Please pray for perseverence and peace for all of us.  I know all of this comes from the chemo and it is just a part of the side effects.  But the daily struggles are exhausting and three year olds are not known for being the most reasonable folks around.  She already proclaimed twice since we got home, "Well fine! Then I'm just going to my room."  I just smile and say, "Okay."  (Though in my head I sometimes yell, "well fine!" But I promise not to say it :)The sprints in the cancer journey aren't so bad, its the marathon that does you in as a caregiver.

So now she's off to take a nap, and crying, "I'm hungry."  I am not ashamed to say, I gave her a handful of chocolate chips because I know they still taste good and we all need her to take a nap now.  (Don't worry, I brushed her teeth first.)

Update on Heather Miller: She got her pizza wish yesterday, too (it's a chemo-thing) and should be heading home today from her recent lung surgery. YAY! She'll start chemo again next Friday.  She was interviewed by their local TV station and is looking great.  You can find the link at the bottom of her webpage.

Thursday- A New Day

UPDATE:  Dr.'Waffle' just made rounds.  Julia's flu swabs all came back clear! They are still watching her blood cultures to see if anything grows.  They are still concerned about a possible port line infection.  If she remains fever free over night she will be allowed to go home some time tomorrow.  We've been reading books and eating cheerios.  Hopefully she will be napping soon :)

A quick note to all our local friends...
Julia cannot be around anyone who has received Flumist in the past 7-10 days or she could contract the flu.  So we will be adding this to the list.  Please let us know if you or your child have received Flumist in the past 2 weeks or MMR, varicella, or polio vaccines in the past 3 weeks.  Yet another reason why its easier to just stay home. 

****************

Julia slept well, though she ran a fever all night.  The tylenol brings it down around 101, but we can't get it any lower.  She woke up hungry, but wouldn't eat more than one bite (probably more from chemo side effects than being sick), so we went back to ice chips.  The resident came by this morning and said she still looks good.  Her blood cultures were clear when they checked this morning.  YAY! They did her seasonal and swine flu tests this morning- she's not a fan of the nasal swab.  (She was tipped off to the process by the MRSA one yesterday.)  She yanked it out, threw her pacifiers, and yelled that she was going home.  So I guess there's still a little spunk hiding in there :)

They checked her temp around lunch time and she was under 100 for the first time since Tuesday.  Without the fever she seems a lot more like herself.  She's been talking more and actually asked for pizza for dinner.  So hopefully we are turning a corner.

Thank you for all your love and prayers.  We are truly blessed!

And good news:  Heather's post op recovery is going well, too.  The tumor was removed (they found some others, too) and she came through everything okay.  Her postop fever is gone and she's moving around and may be going home :)  She'll start chemo again soon.

Wednesday Night

It is very surreal to be sitting in the dark updating the blog in one of these rooms again.  I keep getting flashes of all that happened back in March and April with her surgery and diagnosis.  Back then everything was so new and there were so many unknowns.  Now this feels like our home away from home...

Not much has happened today.  She is still in contact isolation.  We are separated from the world by two heavy doors and a sanitizing station and everyone who comes in is suited up.  If only we could maintain that barrier all the time and avoid new germs.  Unfortunately its not a portable arrangement. 

This round of fevers is just a reminder of what lie ahead.  Tis the season for cold, fevers, flus, and bugs.  Unfortunately with a port, everyone of those lands you a stay at Camp Brenner.  We have been so blessed up until this point that she has stayed so healthy.  Most chemo patients have had dozens of hospital stays by this point.  We are very thankful for her good health and resilience and are preparing ourselves for the next year with this port.  It is such a blessing to have for her countless tests and tretaments, we want to do everything in our power to keep it healthy and working.

She has laid still all day today watching TV.  She tried to eat a few things, but never got past the first bite.  She's had several cups of ice and half a popsicle, so hopefully that helps.  She is still running a fever.  They've been giving her tylenol, but the lowest its been is 101.5.  Unfortunately we run high fevers in our family and motrin works best for Julia and me.  Unfortunately with only one kidney, Julia is not allowed to have motrin, so we wait.  She is feeling pretty achy all over.  She cries whenever we have to move her.  The nurses have all been wonderful and are doing everything they can for us.  We haven't talked to the oncologist since this morning, so we will hear their plans at rounds tomorrow.

She is handling everything well.  She did talk once today, when she was watching TV.  Kai-Lan asked if anyone wanted to go to the beach with her and Julia said, "yes, I do."  Me too, sweetie, me too!

You can see she still keeps the pacis in her toes, like before.  She has now designated a specific color for each appendage, too funny.  But it has helped her to cope and comforted her tremendously.

She asked for her Bible stories around 9pm and has been slepping peacefully since.  We pray for a good night's sleep and no fever spikes tonight. 

Camp Brenner

UPDATE:
Her labs look good, same as Monday.  Her blood cultures have been sent off.  She still has a fever, despite the tylenol.  She's showing no signs of any kind of illness.  They did her rocephin infusion this afternoon (antibiotic safety net).  She has been hungry all day, but nothing tastes good.  She finally ate two cups of hospital ice...its a start :)  She fell asleep around 3pm, I didn't think she'd ever get tired! And we wait and rest.

**************************

Everyone was waiting for us when we arrived.  They took Julia right back and sweet Nurse Nancy got started on her port access, labs, and blood cultures.

Julia was so sad through the whole process.  Even Nancy knows that's not like her.  We know she's sick when she's sad.  Dr. Wofford checked her out and unfortunately we can't find any obvious reason for the fever.  They joked it's just a 'Wednesday thing' with her, because we were here just a week ago with no explanation.  Dr. Wofford felt she needed to be admitted until a cause was found.  A fever of 103* is just too high.  They are most concerned about a port line infection.

So I don't really know what to pray for exactly- if we ask for a definite answer it could be a dangerous infection, if we don't get an answer it's probably just a virus.

So for know we pray for God's will in all of this and we are resting comfortably in Him and in the wonderful staff and facilities at Camp Brenner.  We pray she sleeps soon.  She's been up since 3am with only a short 30 min nap.

Please pray...

Julia spiked a high fever during the night.  We're heading to the hospital this morning.  We've been up since 3am.  She's very sad. but we can't find the source of her discomfort.

Chemo Monday (Week 23)

We were back at the hospital Monday for chemo.  Julia was not upset today which always makes things easier for all of us.  It was a long morning at the clinic.  It's funny what seems normal to us now.  Our perception of a doctor's appointment has drastically changed.  A typical oncology clinic appointment is 4-8 hours and it really doesn't feel that long, though lunch is not built in for patients and you can't leave or eat in the clinic, so you get really hungry by the end. 

The lab was really slow today and everything they do here hinges on those numbers.  Sadly Ms. Michelle is sick, so no Art for Life today.  (Good news: Ms. Betsy had a healthy baby girl!)  It really drove home how important their volunteer service is to these kids.  There were some long faces around the waiting room and the kids didn't know what to do with themselves.  The playroom is only open for two hours in the mornings and Ms. Stacy did a good job thinking on her feet to fill the gap.

We made some new friends today.  It is amazing how easily you get to know people here and how your conversation goes from "hello, what's your child's name?" to the details of their last surgery and chemo side effects.  Cancer is definitely the great leveler.  The clinic has patients from dozens of racial backgrounds, languages, and socioeconomic groups and we're all in this together.

Julia's physical went well.  She bounced right back from last week's fever and everything looks good.  We talked a lot about end of treatment protocol.  I can't believe we're that close! After chemo ends we will wait 3 weeks, then she will have her chest xrays, ultrasounds, and echo of her heart.  At that point if all is clear we move to monthly clinic visits for port flush and labs for the next year.  If she is still clear then she would have the port removal surgery.  Then clinic every 3 months for a year, then every 6 months for a year, then every year.  I'm not sure what the future scan schedule looks like, but it will fit into those appointments.  Next time we will also talk about the plan for 'one kidney health' which is vital to Julia now.

We've been given the go ahead for flu shots.  They want us all to have them, mostly for Julia's protection.  We were also told she cannot be around anyone who received Flumist because of potential viral transmission.  Several local schools have been mass innoculating with the mist. She said this is a nightmare for them because their chemo kids are in these classrooms surrounded by the flu virus- yikes! Lymphoma and leukemia patients are in treatment for 2-3 years, so school attendance is a part of life for many.

Her counts came back stable.  Her white blood count is 3000 and her ANC was 1230.  Red blood count is still low, but not too bad.  So she got the go ahead for chemo.  Today is her last round of doxirubicin! Yipee! This is our love/hate drug.  We hate what it does to her body and the potential permanent damage it is causing to her heart (they will check every 2 years for the rest of her life).  This is the drug we were so hesitant about in the beginning.  But it is also the drug that we pray is saving her life and preventing those nasty anaplasia cells from spreading anywhere else.  It works by preventing DNA from forming, therefore the cancer cells would not multiply.  As much as I hated it in the beginning I have learned to view it as our safety net and our best chance for long term health.  As hard as it was to find out we had to step up from the simple treatment plan to this one (with doxirubicin and radiation), it is nothing compared to the next step in Wilms' treatment which has intense and devastating health effects.  What often times seems overwhelming at the moment, turns out to be less devastating than the alternative.

They did Julia's syringe chemo drugs, then hooked her up to the pump.  She likes to watch the red stuff as it makes its way down.  They wrapped all the patients in heated blankets because the A/C was so cold... 

Here it comes...

 

When the blankets weren't cutting it, they passed out hats.  Here's Julia's! She loves it and had to go show it to her fish friends...

 

Bye Rainbow Puppy, see you next time...

 

...for our LAST CHEMO!!!!

I never thought much about these clinic appointment cards, but if you read the plan options- admit, chemo, lumbar puncture, bone marrow, sedation, etc.- this is heavy stuff.  These brave kids never get less than a port access or IV- (that's an easy day!) and they're all still smiling the best they can.

Julia was really tired the rest of the day.  She took a long nap and didn't do much, besides eat Monday night.

 

She slept well and is bonding with the bed today.  We pray the medicine is doing its job in there and that she rides out these last two rounds well.  We go in for labs (and flu shots) next Thursday.

Now the rest of us are off to get some school work done, hopefully...

Out of the Mouths of Babes...

Carter while putting on his sneakers,

"You know Mom, if you have two left feet; you have to have two left shoes."

St. Baldrick's Day!

Today was the big day!

 

Shaving day! 

The kids were having fun eating lollipops and watching all the action...

This sweet father son team shaved in honor of Julia and donated their long locks, too.  Thank you for your generosity- we are very honored.  (And in the middle is Mr. Jeff who works at Brenners' 9th floor.)

Then it was Daddy's turn.  Julia even got to help! She was excited because Mommy never gives her a turn with the clippers at home.  Hopefully she's not getting any ideas...

 

Uncle Anthony came to offer moral support and the crowd threw in $250 for him to shave his head and goatee, too!! So with Brian, we now have three shavees...

 

Carter got in on the clipper action, too...

Here's the clean cut-crew chatting with Dr. McLean...

 

Thanks to all our friends who came out to offer their support and love...

 

Then it was Dr. Mclean's turn. They let all the Brenners' kids do the shaving. They actually took up a collection to shave his eyebrows, too. But in a surprising twist they gave him the option of buying them back for $200 and he graciously accepted :)

 

They made posters of many of the Brenners' kids being honored today...

  

...including 4 who earned their angel wings this past year.  Brenners' oncology has had to say goodbye to 8 kids this past year.  They will always be a part of the 'Camp Brenner' family and are dearly missed.

It's been an emotional day. There were lots of tears today from the parents of all these amazing kids. We truly mean it when we say they are our heroes. They endure so much with innocence, grace, and strength. I wasn't expecting it to be so hard. There was amazing comfort though in the hugs of those walking this road alongside us who know our hopes, fears, dreams, pain, joys, and anxieties without saying a word.

Bald is beautiful, especially when it helps us fight childhood cancer.