CureSearch WALK

 

If you've been here for any length of time, you have probably heard me mention CureSearch. I have written before about the Plight of Pediatric Cancer. When people think of childhood cancer the first thing that comes to mind is little bald heads and the second is usually St. Jude Children's Hospital.  This institution is an amazing place and is fully committed to the children in its care.  However, those select few are only 400 of the 40,000 kids in treatment.  While they do provide comprehensive and complete care for those 10% of children with cancer that they treat, only 20% of their total funds are going toward pediatric cancer research.

Without research, little is going to ever change in the pediatric cancer world.  The US government gives less than 3% of its budget to ALL 47 pediatric cancers.  Relay for Life and the American Cancer Society give half a penny of every dollar raised.  And the list goes on.  The hurdles in fighting kids' cancer are enormous because...

• Kids' cancers are not profitable to drug companies.
• Kids do not vote.
• Kids cancers are different than the same cancer in adults all the way down to the molecular level.
• Kids' cancers behave and respond differently. (They are different cancers with the same name.)
• There are too few kids as a total research base.
• Kids get the hand-me downs of adult treatments.  Pediatric formulations are not always available.
• Kids bodies are not little adults.
• There are complex ethical issues with kids.

So what CAN we do?

That is where CureSearch comes into the picture.  CureSearch unites the Children's Oncology Group (COG), the National Childhood Cancer Foundation and the 200 hospitals treating 90% of children with cancer in the US.  95% of their funds go directly to pediatric cancer research! Through CureSearch and the COG it is ensured that every child at one of these 200 hospitals receives the same protocol of care for their specific disease. They provide tremendous resources and support to parents, patients, families, doctors, and nurses.  They are on the cutting edge of research, while at the same time supporting all the kids in trenches who are fighting for their lives.  

A cure is not just going to happen it takes funding.

We never dreamed we would find ourselves walking this road, but we know it has been ordained for our family. In two short years our eyes have been opened to the tragic reality facing our children diagnosed with cancer. We have seen our own child suffer and endure painful procedures month after month. We are walking first hand the road of long term disability that afflicts 60% of childhood cancer patients.  We have witnessed heart wrenching suffering in the lives of those kids fighting alongside us.  We have seen first hand, on more than one occasion, the devastation of telling a family they have no more options left.  We have seen what cancer does to children aside from just the physical effects.  We have seen the ways it impacts families on every level.  And we have seen more children earn their angel wings than my heart can even hold. Children's funerals should not be a regular part of life for anyone.

People ask us all the time what they can do to help us.  Just this past week, as Julia faced an extremely difficult hospitalization so many asked if there was anything they could do to help. 

My answer is, yes.  Please help us find better, safer treatments and cures for our kids.  That is our deepest wish and desire.    

We pray that you find it in your heart to join  TEAM JULIA in the CureSearch Walk in Durham, NC on February 26th.  Registration starts at 9am.  The walk begins at 10am.  It is a 1.5 mile, family-friendly event.  There will be many other fun activities on hand, too. Please come out and join us in support of Julia and her brave fight.  It will mean so much to her to have her family and friends beside her. If you live too far away, you can still donate to our team or become a "virtual walker" and fundraise on your own. It can be as simple as sharing my link on your facebook page.

One Thousand Gifts

I have been reading the most amazing book lately,  

One Thousand Gifts: A Dare to Live Fully Right Where You Are 

by Ann Voskamp.  

She is a brilliant writer, likely to become one of the greatest of our time. 

As a young child, Ann witnessed her little sister's death when she was hit by a truck and killed in front of their home.  Her parents then struggled emotionally, physically, and spiritually for many years.  Later in life, she watched two children in her extended family die slow painful deaths from a genetic disease.  Needless to stay her faith was floundering and broken.

a brief synopsis of just a few of Ann's beautiful words...

At the request of a friend, Ann was challenged (as an adult) to start a list of one thousand things she was thankful for.  It started simply, but the power of that simple act became life changing to the very core. She talks about the original sin of man- the sin of ingratitude- the belief that God is holding out on us.  It is this original sin that breeds discontentment, self-condemnation, criticism, and insatiable needs and wants (the essence of the fall).  But there is a remedy to this disease... gratitude.

In the Greek, the word is eucharisteo. It is the action of giving thanks for gifts bestowed.  Christ gives us the perfect example..."And He took the bread, gave thanks and broke it, and gave it to them" .  This was His grace-filled way of living.  Giving thanks in all things, even when the bread gift was death.  Paul fills out this thanks picture in Philippians... "I have learned to be content with whatever I have.  I know how to live on almost nothing or with everything.  I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. (Phil 4:11-12)" Paul tells us he has learned something.  It is an action he had to practice and be taught.  We can learn gratitude in the midst of death, suffering, debt, and brokenness.

"Gratitude bestows reverence,

allowing us to encounter everyday epiphanies,

those transcendent moments of awe

that change forever 

how we experience life and the world."

-Sarah Ban Breathnach

I cannot recommend this book highly enough.  Every sentence touches, connects, and challenges your soul. I have experienced, tested, and walked the road of this very revelation myself the past few years. I can testify, with every ounce of my being, that she is speaking the Truth.   

It is a book you could easily devour, but the richness of the words leaves you wanting to savor every page. Ann has a way of writing profoundly while in the very same breath speaking the unspoken thoughts and feelings that we all have inside.   This is not just a book, it is an experience... one that everyone needs. I urge you to order a copy.  It is on sale right now on many sites, like Amazon.  And if you are interested, the (in)courage site has chosen this book for their first online book club selection.

Finally, Friday!

The last half of the manometry test was rough.  Julia ate her breakfast (more pizza and crackers) and then Candace came back to finish the testing. We were happy to have her doing our test.  She did Julia's other manometry test back in August and still remembered us. She administered the stimulant drug into the lines, running directly into her colon.  She started to cry almost immediately from the pain.  There was nothing to do for her, aside from laying next to her.  She had to remain still in the bed for the duration. It was a long hour.  Dr. Fortunato came in during the end to watch and then review the hour's data.

The good news news is her colon does respond to stimulants and it is showing a fairly coordinated motion.  The problem of course being that it does not do this without drug stimulation.  Over time these drugs will lose their effectiveness (we've seen that happening already) and the long term use causes damage to the muscle- much the way steroids do.  He reassured us that seeing this response on the screen is a wonderful sign.  It tells us that therapies/interventions have a chance at working.  The other possibility could have been no response to the drug.  They had another patient down the hall with that outcome.  The solution to that is a permanent colostomy.

We were excited to see her body respond and eager to hear the options.Dr. Fortunato said we are determining where she falls on the spectrum of treatment.  Doing nothing and waiting is obviously not an option because of the duration, the severity of the colon dilation, and the damage being cause to the bladder.  He still deciding between the available surgical options.  I was under the impression from what his nurse told us, that we would leave with a surgical plan and rough schedule.  As it turns out, just like the oncology floor has Tumor Board, the GI/8th floor has Surgical Board.  He will present her case to all the other surgeons and a plan will be made.  We see him again on February 4th.

Not for three. more. weeks.

It is actually the same day we see Dr. Hodges again. I must say that is not at all what I expected to hear.  But I feel like we are so much closer to a solution and I respect the fact that decisions in this hospital are made by a team of great minds.  Of have nothing but the utmost respect for the pediatric surgical team at Brenners, so it is comforting to know these minds will be working together.  I asked what we were supposed to do in the meantime and he said the same routine we have been with the 3 laxatives a day.  I also feel like the worst is likely behind us.  The rest will be tough and the road ahead is long, but we pray this week was the worst of it for Julia.

They came in early afternoon to start her discharge.  We got all her lines out.  There was lots of tape removals and tubes to be removed from sensitive places.  She was not happy, but really wanted to go home.  Then I told her it was bathtime.  This child had some serious funk that needed to be removed.  She has been covered in mess more times than I care to remember this week and I could not wait to get her in the tub.  Once she was in, it was as if we washed away the sad JuJu and the child we brought in her was back again.  It was so good to see her smiling and chatting.  She soaked while I packed.       

Then we headed up to the 9th floor.  Ms. Betsey had come down to do art with her and I told her we were getting out.  She told us she would wait upstairs and Julia got her own private art class.  She was so thrilled.  I went to clinic to talk to the nurses and get Julia's CT results.  None of the doctors were around and Diane had not seen them yet.

I am thrilled to report that everything looks great and we were given an NED!! 

Huge praise!! Hearing those words will never lose its power.  It is something we never take for granted and we know it is an undeserved, unearned gift presented to us for the next 3 months.  We will cherish it every day.  They said everything they had looked good and we set her next clinic appointment for April 7th.

We spent some time catching up with all our nurses.  Nancy was so sweet and took Julia to the birthday closet.  She said with all the suffering this week, she deserved a surprise for her bravery. She is still our little superhero!

As we headed out of the hospital, we stepped out on the ground floor and Julia said, "Aren't we going to the cafeteria?" You can't say no to a kid that was starved for most of the week.  She was so excited about her food.  It was so cute!

 

We headed home and she napped in the car.  I think the walking from the hospital to the car did her in.  She was happy to be home.  Carter and Mimi had everything ready to welcome her back.

We decided to head to The Loop for dinner.  It was our monthly fundraiser night for the Kids of Childhood Cancer Foundation.  We really look forward to the time to see our friends from the floor.  Carter and Vinny are such a cute pair.  They love to play together and always have a good time. I just love that kid!

We all hit the pillows a short time later.  The effects of a week in the hospital hit you pretty hard when you let your guard down, your body crashes, and it all hits you at once.

We had a very sweet moment at bedtime.  I was putting Carter to bed and catching up.  I have seen him very little this week.  Then we talked about Julia's hospital week and everything that happened.  He also wanted to know about her scans.  When I told her there was still no cancer, his little face just little up.  About that time, Julia peaked her head in and Carter told her to climb up in bed.  She crawled in between us and he couldn't stop hugging her and telling her the good news over and over again. Then we prayed together, sang songs, and headed off to sleep.

We all slept well and woke up this morning feeling refreshed.  The kids have been looking forward to disassembling the gingerbread house.  It is one of their favorite traditions.  Every January, they break out their play tools to destroy the house and have a snack.

They were definitely successful...

and the rewards were yummy...

Julia has rebounded very quickly.  Once she caught up on eating, drinking, and sleep she was back to her old self and ready to go.  It has been a wonderful Friday with the blessing of TWO fresh new lives for our friends...

fun playdate with friends...

...family night at Feeney's and just being able to get out and enjoy the sunshine and fresh air! Sometimes it's the little things that touch you the most. So now we wait until the next steps and enjoy the time to regroup.

We thank you all for your love, support, encouragement, meals, and prayers this week.  We could feel the love of so many and are feeling incredibly blessed with good results. 

Brighter Days

Julia woke up last night around 5:30pm, after pretty much sleeping the entire day.  She was happy when our friends arrived with dinner.  I honestly can't say if she was more excited to see Will and Lizzie or the Papa John's pizza.  After 4 days of starvation, I'd have to say the pizza may have pulled ahead for the lead.  She ended up eating 4 pieces, a dozen crackers, chocolate ice cream and 24 oz of water! It was sweet to see her and her buddy, Will, curled up in the bed talking and watching TV.  He's missed his JuJu.

Julia has found her voice again and started talking Wednesday night.  It's so wonderful to see her come out of the zone and smile again.  Ms. Betsey sent one the Art for Life volunteers, Laura, to her room last night.  She had a good time making two shape collage portraits. She's frustrated to not be able to use her dominant arm, but stuck with it to finish her pictures. She fell asleep around 10pm and only woke up once for about an hour around midnight.

This morning they are completing the last half of the manometry testing.  She is finishing her breakfast now (more pizza, of course).  In an hour they will administer medications to her colon, and an hour after that they will gather their last data before removal.  Dr. Fortunato is supposed to come by after he finshes his next scope patient.  The good news is she has been peeing on her own overnight.  SO we know her bladder is still functioning, at least when her colon is empty.
The plan for now is that she will be released sometime this afternoon. It is such a blessing to see her chatty and smiling again. We've missed you sweet JuJu!

And for some exciting news... my dear friend is in the hospital today (on her birthday!) delivering her twin baby girls!! Praying for a smooth, quick, healthy, and easy delivery! Can't wait to meet your newest blessings :)

OR Report

After a late night last night, some middle of the night bed changes, and 6am baths, Julia decided to sleep in this morning until 11am.  She was completely knocked out.  Her nurses were very sweet and let her sleep.  So appreciated! It is a huge no-no to wake an NPO kid, especially on the day of surgery. Thanks to everyone for their cooperation. (Didn't even need a sign Ashton :) but if sleeping for the entire day means she's up all night, I hope the same nurses are back to play in the wee hours!)

She had a little time before surgery so we headed to the playroom to paint some window art.

She was excited to have company.  Mimi, Carter, Daddy, Pastor Ken, Debby, Ginny, and Giselle came to play.  She's not much of a playmate these days, but likes to watch the action.

They took her down to surgery around 12:30...

She completely understands what is happening.  She actually still remembers laying on the operating table during her past surgeries and can describe who was in the room and what everything looked like.  We could tell she was going to put up a fight when they went to take her back.  Her NG tube and IV experiences this week have made her a little more 'gun-shy' and a little more spunky.  She was also begging for food.

The anesthesiologists were great.  They did a full history.  We talked about all her past sedation experiences and they went back to the computer to research her past 9 sedations.  They decided we would do a ketamine pre-med so she would be out on the stretcher when they took her back. Note to self: don't tell her it's just saline because it burns going in.

It worked instantly. As they wheeled her back to the OR, anesthesia said, "Add that one to your arsenal of good drugs." So the list grows.  We know for a fact that propofol, clonidine, ketamine, morphine, and zofran are our friends.

She was in the OR for about an hour and a half.  Dr. Fortunato came out to talk to us.  He said they were able to explore the entire length he wanted.  Her colon tissue appears healthy and pink.  They did not have to do any biopsies.  The problem lies in the fact that her colon is enormously distended.  It is huge, even to a GI doc.  He said it is so large, the scope coiled into a circle because of all the space.  Thus the problem. 

After they pulled the scopes out and drained the saline fluid, her abdomen was completely sunken except for a huge round bulge at the bottom... her bladder.  They immediately cathed her to drain it and drew over 500 cc's of urine.  It appears her bladder has not been functioning at all this week, while her colon was full of Golytely solution.

Dr. Fortunato said this solidifies Dr. Hodges (urology) case of why he was adamant something happen and happen soon.  The shear size of her colon is compressing her bladder and causing it to basically, for lack of a better word, spasm and panic.  The walls are thickening, it's over-reactive, and she cannot control her urine flow.  He told us at the last visit that once her bowel situation is remedied/controlled (hopefully in a year) she will begin long term biofeedback, physical therapy, and bladder retraining. We see him again in early February.

They took her right back to her room from the OR and she was awake and somewhat responsive as we walked back. Dr. Fortunato was also thoughtful enough to remove the NG tube while she was sedated.  A million thank yous.  It is the little things.

She is sound asleep now and hooked up to all her colonic monitoring equipment.  She will be in the bed now for 24 hours while this computer and leads monitor her colon activity.  The good news is she gets to eat and drink.  In fact she has to in order for this all to work.  So we are praying she wakes up with an appetite.

These 8 leads are wound into one catheter running into her body.  They are attached at 8 different points along her colon to monitor the muscle movement.

The goal is to get a "stairstep" reading on these 8 lines from the top down which would show a progressive, synchronized movement by her colon.  As you can see we are pretty much flat line at this point.

They are also concerned about her bladder being so full and not emptying.  It should not have been holding over half a liter of urine.  The peds doc just came in to discuss the issue.  We talked about all her past urinary issues and they are going to closely monitor and decide what kind of bladder monitoring she needs done.

In the OR...

Julia went back into the OR a little after 1pm.  She slept until 11am today and had a visit with Carter, Mimi, Daddy, and some friends this morning.  We brought her down for surgery.  The anesthesiologists were wonderful.  They gave her some ketamine in my lap, so she was fully sedated when they took her back to the OR.  We feel very comfortable with Dr. Fortunato and his team.  She will be in surgery for the next 1-2 hours for the colonoscopy, possible biopsies, NG removal, and colonic manometry line placement.  Then we will wait in recovery and head back up to the room where she will be immobilized for the next 24 hours for colonic monitoring.

Please pray for her peace and comfort.  She is beginning to plead for food again.  She has not eaten since Sunday morning.  She hasn't had anything to drink since 9pm last night.  She was apprehensive about surgery, but completely understood what was going on.  She still remembers being on the operating table from her past surgeries.  We are praying for definitive answers as to her next course of treatment/surgery.  We still have not received word about her CT scan results.  Hopefully in the next day or two.  Praying for another gift of NED.

In the Zone

Julia was finally taken down to CT last night around 7pm.

The nurses down there were great with her.  As soon as they started working with the IV she panicked.  We assured her there wouldn't be any needles and she calmed down.

Her CT nurse did an amazing job talking her through what was about to happen.  Dr. McLean was on board with trying it without sedation and testified to Julia's maturity and cooperation.  Since she was awake they let me stay in the room next to her and hold her hand in the CT scanner.  She laid perfectly still and requested I sing Christmas carols.  It worked wonderfully.

We are not sure when we will hear about results.  We know it has been read and everything is in the computer.  The docs on this floor do not specialize in this area, so they are awaiting one of our oncology docs to come down and talk to us.  The hospital is on a reduced staff load because of the snow/ice storm we're receiving, so I'm not sure when it will happen.

We did get some sleep last night.  The best you can get in a hospital.

Unfortunately the Golytely solution makes for a very messy output.  We are going through her pajamas and sheets at a rapid clip.  She had a couple middle of the night baths last night.  This morning she woke up "in the zone".  The hospital "zone" we saw so many times during chemo, radiation, surgery, and infections.  She talks very little, nods some, doesn't want food or water, stares off into space, and wants the sides up on her bed.

I know yesterday just wiped her out.  There was a good 3-4 hours of solid screaming at the top of her lungs and vomiting.  And the combination of nothing to eat since Sunday morning and having her body flushed leaves her little reserves.  She's been unable to move at all on her own.  She hasn't talked much and doesn't have much of a voice left.

It is heartbreaking to be doing this to her.  She was a completely healthy, happy, playing child just a few days ago and know we've put her through these procedures that are sucking the very life out of her.

It is so much harder knowing we had to do this to her when she wasn't even sick to begin with. It makes me so mad at cancer. Loving God and hating cancer right now.  It just fuels my fire to continue to fight for pediatric cancer funding.  We need better treatments that don't destroy our children while saving their lives. Look for a post soon about how you can get on board (from anywhere) to help TeamJuila raise money for pediatric cancer research.  Our local walk is February 26th in Durham. If you're a local Camp Brenner family and haven't created a team for your child, please do! Here's the link.  Even if you can't attend let us honor your child at the event and make your child's story one of the "Reasons We Walk".  CureSearch is the funding base behind the COG hospitals like Brenners.   

This morning she turned and said, "TV off. I need Betsey's Art Kit." Ms. Betsey is our Arts for Life teacher on the 9th floor here at Brenners.  She is such a vital piece of the heart of our clinic and we adore her.  This program brings art and music therapy into the hospital for clinic patients and inpatient kids.  It is an amazing thing to see these children in all stages of life and cancer treatment come out of their shells and express themselves through art.  It truly is a lifeline.  If you ever feel called to do something tangible for local cancer kids this is an excellent non-profit to fund. The kids love the art, love her and all the volunteers.  It is Arts for Life that makes these kids actually look forward to coming to the hospital for treatment.  And they choose art over TV and video games almost every time.

She was able to do a little.  Unfortunately, her dominant hand is strapped to a full arm board and she is too weak to sit up.  She did a few things herself and then wanted to direct me in finishing.  This afternoon she asked to paint.  It was difficult to do laying down, but she painted for a good while.

We enjoyed a visit from friends this morning who brought me lunch and then sat with Julia so I could eat and take a shower.  Thanks guys for braving the elements for us.  It means so much. She wasn't much of a playmate, but seeing friends really brightens her spirit.

So now we wait... waiting for Oncology to give us CT results and waiting for surgery tomorrow.  She will go into the OR around noon for the colonoscopy and to have all the manometry lines put in.  Then she will be brought back to the room and have to stay immobilized for 24 hours.  Then she will go back to the OR Thursday afternoon to have all the lines taken out. The plan right now is to release her sometime Thursday evening.  She has been sleeping on and off for the past hour.

Thank you for all of your continued love, support, messages, and prayers!

The Monday Blues

We arrived at the hospital around 8am this morning.  They got her a room around 9am and we spent most of the morning just talking.  The doctors cycled through- peds, GI, residents, etc.  They were awaiting her orders and catching up on all her history.  She had a fun morning in the playroom with her friends.  She hasn't seen any of them since before Christmas.  There were smiles all around and lots of sweet hugs.

Around 11am they came in to give her 2 enemas and put in her NG tube.  It was a nightmare.  They couldn't get it through her nasal cavity and down her throat.  The nurse jammed it in over and over and over until it finally went down.The repeated shoving caused a lot of pain up her nose.  She finally got it down and she started vomiting.  The screaming and vomiting lasted about 2 hours.

Then we headed down to x-ray to be sure the tube was in the right place.  On the way back we stopped in the oncology clinic to check in with them so they can add her to their rounds and do her 3 month appointment while we are inpatient.  Dr. Laroche the pediatrician, the peds resident, Dr. Hill the GI doc, and Dr. Mclean up in oncology have been great.  Their have been dozens of phone calls trying to get everything coordinated.  She settled back into her bed and was finally calm and comfortable again.  She even fell asleep, exhausted from all that has happened already. 

They decided this afternoon they would do her CT scans today before they start adding the gallon of Golytely flush solution to her NG tube.  We had both just fallen asleep when they came in to start the IV.  The nurses try to start it without waking either of us up. She was awoken to bright lights, a tourniquet, and a nurse squeezing her arm.  Not the best approach. And unfortunately radiology requested a very large 18 gauge IV.  They did both her hands and infiltrated both.  When the veins burst her hands swelled to twice their normal size. With every stick they would promise her it was the last time, only to have to do it again.They finally settled on her elbow.  It felt like an eternity restraining her and laying on top of her legs while she screamed at the top of her lungs, "Mommy make them stop hurting me! Why are you letting them hurt me?!"The look in her eyes and the terror on her face will never leave my memory. A piece of my heart died that day. She has been through so much already battling cancer. This all just seems like cruel torture now. The child who used to lay on the bed with her arm out and watch the nurses put in her IVs will never be the same. Moments like this I hate cancer so fiercely for what it has taken from my daughter and all of us.

We seem to finally have a good access now and are praying for it to last all week. Really missing the portacath right now- our faithful friend and access line for a year. Ms. Betsey, our Arts for Life teacher from the 9th floor, came down as they finished and brought her two art projects and her own Crayola art kit.  She smiled again. It definitely brightened her day and hopefully she will feel up to some fun tomorrow.

So now we are waiting to head down to CT this afternoon/evening.  We are hoping to not have to sedate her.  Though at this point that might be a gift after such a rough day. (She is hoarse form all the screaming she has done and sadly she has been unable to drink all afternoon because of the possibility of sedation.) She cannot have the normal versed/pain med combo they usually give because it makes her violent, aggressive, and hysterical for 6 straight hours.  She had a horrible experience after her diagnostic CT.  Dr. Sam, our anesthesiologist and angel on earth, found a wonderful mix for her of propofol and clonidine that he used during her 8 days of radiation. But that would mean getting the sedation team down, too.  We'll see.

Thank you for all your prayers and encouragement today.  It means the world to us to read your messages and feel your prayers.  In the hospital that becomes your lifeline.  It has been an emotionally tense and draining day, but we are holding up.  Please continue to pray for Julia's comfort and for smooth and successful procedures.  And above all else, pray for clean scans today.  I don't know when it will be read and who will give us the results.  We are also in the midst of a snow/ice storm that started around 3pm, so I don't know which doctors are still in the building.  We are believing and hoping for clear scans and another gift of NED.

HOPE from Jesus Calling (Sarah Young) this weekend...

HOPE in God and you will be protected.

HOPE is like a golden cord connecting you to heaven.

The more you cling to this cord,the more God bears the weight of your burdens;

thus you are lightened.

Heaviness is not of God's kingdom.

Cling to HOPE,

and my rays of Light will reach you through the darkness.

It's Here...

We've been both anticipating and dreading this week for a long time now.  Monday morning Julia will be admitted to Brenner's Hospital for a week-long stay. Her bowel incontinence issues from cancer treatment remain and the medicines and therapies used so far have proven unsuccessful.  Her bowel issues are now damaging other organs in her abdomen and the problems are compounding.  Dr. Fortunato, her GI doc, is doing the last series of tests before surgery.

They will do x-rays, ultrasounds, labs, a colonoscopy, and colonic manometry.  She will have an IV, NG tube, and several catheters this week.  She ate her last meal at 7am Sunday morning and is only allowed clear liquids from now until Thursday night.  She started the day excited at the idea of eating popsicles all day, but sadly by dinner time the novelty had worn off.

She began pleading for food around 4pm.  It has been absolutely heartbreaking.  We have explained to her the guidelines for the week and what will happen, but that means very little to a hungry four year old.  It also breaks my heart to think of the thousands... millions of mothers who deal with this on a daily basis, for a different reason.  Not being able to give food to your hungry child tears at the soul of every mother in an all-consuming way.  It goes against every instinct and emotion in us.  

This week was also her scheduled 3 month oncology clinic appointment for her check up, labs, and scans.  We had made the decision to do a CT scan this time.  Julia has only had one at the time of her original cancer diagnosis.  The top doctors at the Wilms Tumor Symposium urged us to get her a CT at least once a year.  They feel in the cases of anaplasia it is non-negotiable.  I feel a sense of relief that we are finally doing a full scan, but at the same time my "scanxiety" is on overdrive.

We have a full week ahead, but do not know the timing as of yet.  We know definitely that she will go into the OR around lunch time on Wednesday to have the colonoscopy done and have all the colonic manometry lines put in.  After that she will have to lay completely immobilized for 24 hours.  As for the rest of the tests we are not sure.  GI has a list of what they need and Oncology has their own list.  The goal is to put all the lists together, not repeat anything, and get everything done.  I am cautiously optimistic.  We hope to find out all the details in the morning.

We would love prayers for this week ...for Julia as she copes with many painful and invasive procedures, at the same time not being able to eat ...for my endurance and patience in helping her cope when she is irrational, hungry, and angry ...for synchronization and timing of everything that needs to happen ...for clear scans and another gift of NED ...for wisdom for the doctors and us in making the best decisions for the next steps ...for Carter as he handles the craziness of our life and copes with the stress he feels about the situation ...for opportunities at the hospital to share the gift of HOPE we've received.

Back to Life, Back to Reality

We have had a great vacation in PA.  It's such a treat to spend 18 days up here.  It has been a welcome break from real life, time with relatives, and time to relax.  As we prepare for Julia's hospitalization next week, upcoming scans, and surgery- this was just what the doctor ordered.

We've enjoyed beautiful, surprise snowfalls...

Poor Grandpa grilling in the snow....

under fire!

Lots of game nights...

games of snow soccer...

...yummy dinners trying out new recipes, time spent catching up with relatives, football on TV, high school wrestling matches, art projects, trips to the museum, reading, and just hangin' out.

And our last day was a fabulous treat.  We woke up to 3 inches of snow and beautiful sunshine.  My dad and I grabbed the kids, threw the sleds in the car, and headed to the hill at the college down the street...

It was a blast! Growing up in Annapolis, every time we had a major snow, my dad would take my sister and I sledding.  I vividly remember many fun hours soaring down the steep streets in our neighborhood- sailing down the hill scared and excited all in one, tiring climbs to the top, and belly laughs all around.  Julia was so funny.  When she didn't want to wait for the sled, she just slid down on her behind!

The hills were just the right size for little legs.

And lots of fun going down...

The tradition lives on!

Tomorrow we head back home. We've missed our friends, Daddy, and church.  Can't say I've missed reality much at all.  Sunday we'll be packing for the week ahead and Monday morning Julia is admitted for a week at Brenner's Hospital.  More to come later...

Birthday Fun

Carter loves sharing a birthday with his Mimi and because it's during the holiday season they've been able to celebrate together every year.

He's been wanting Twister for a long time.  I must say we had a good time playing and believe it or not the adults usually win.  Long arms and legs are a definite plus!

Carter and Mimi pick where we eat dinner.  He's not a big eater, but he definitely has his favorites.  At the top of the list is Japanese.  This kid can put away some serious amounts of white rice, zucchini, onions, and soup! We decided to try out the restaurant near Mimi and Grandpa's new house.

In addition to us and his grandparents, we invited both great-grandparents...

...and his great-great-great aunt.  This was the first time Aunt Melba has been in a restaurant in years.  She is 87 years old, legally blind, and has heart failure.  It took a lot to get her there, but it was completely worth it.  Carter was a complete gentleman- saved her a seat next to him and told her how happy he was that she made it.  We are so blessed to have so much extended family and to be able to spend time with them like this. 

 Happy Birthday Carter and Mimi!

We pray you have a blessed year full of good health, good times with family and friends, and peace!