Guess Who's on Page Two?

There were several of our local media reporters present yesterday at the Beads for Courage launch.  When the paper came out today, Julia's picture and story were the one they chose to feature :) and you can also watch the TV news story below.

Here's a link to the article.

And here's the link to the news story on News 14 Carolina.

Beads of Courage

Today, Stacy invited to Julia to come participate in the Beads of Courage program.

This is an art therapy program designed for pediatric oncology and other seriously ill patients.  It affirms children's courage and strength through their countless procedures and trials by giving them a special bead at the completion of each.  This program was lovingly brought to our hospital as part of the legacy of Kate.  It was a moving day to see her family come full circle and bring a piece of Kate's heart and spirit back to the floor.

Many of our beloved doctors and nurse were in attendance.  Have I said lately how much we love these people? They are and always will be family to us.

Every color bead represents a different challenge.. surgery, port access, scans, radiation, therapy, neutropenic isolation, ER visits, etc. And others for the victories... birthdays, end of chemo, acts of courage, etc.

Julia loved stringing her beads and Carter was an eager helper.  They have both already learned what most of the colors represent. One of the favorites is the radiation beads.  They glow in the dark :)

Each child was also given a "Wingman" bead to start their beads.  I read Julia the description...

"This is someone who flies beside you.  It's someone who protects you. It's someone who watches your back when you feel as if you're flying solo. I want you to know that you are not alone and that you've got me as your Wingman.  That's what this bead means.  Not only have you got me, you've got a whole flock of folks on your side.  You've got doctors, nurses, specialists, and of course your amazing family and friends all rooting for you and working side-by-side to help you get well.  So keep this bead close.  Know your team is big and your own strength runs very, very deep.  I'm rooting for you!"

She looked at me and said, "Mommy, Jesus is my Wingman." I couldn't help but cry.

Julia was very proud of her completed beads.  The strand is taller than she is- somewhere around 6-7 feet long.  She was eager to share it with Lina, one of the therapy dogs.

Her favorite bead is her purple heart.  This is a unique glass bead of their choice.  At the end of chemotherapy treatment they receive their purple heart- how fitting. When she was sharing her necklace with Daddy, he asked her what the heart was. She told him.  He said, "Wow, that's a really big heart!" Her reply? "Finishing chemo is a really big job, Daddy."

She also treasures many of her recent beads-  the silver dog bone for pet therapy with Cree, the silver hand for medical play therapy with Ms. Stacy, the courage bead for her recent surgery, the bumpy beads for our tough at-home procedures, the rainbows for our time with KidsPath...

She has been through so much just in the past weeks and to see her receive recognition and take pride in her courage was priceless.

Before leaving, we stopped by the playroom to play with some friends. Here's sweet Haley with her new bling.

I adore this girl and her family! She brings a joy to the floor that you have to experience to believe.  She radiates a force field of positive energy whenever she is in the room.

Carter and Moses had a ball playing "monkey kong" as they call it.  Julia and Rima stuck to puzzles.  As the kids played I sat and talked with Moses' mom.  She was filing out his bead booklet while we chatted.  The crazy part of this is that you can hand these booklets to any cancer mom and they can recall all this information from memory! Two, three, sometimes five years of treatment and it all comes back in an instant. It is just another tangible sign that cancer changes a family forever.

Nurse Diane came in to catch up with us and happily played puzzles with Julia.  They have always been one of her favorite activities, too.  It was a sweet moment to just enjoy the calm and quiet together.  You don't always get these with your health providers.  It's always good to just be people every once and a while instead of patients.

It was amazing to me to see the affect all of this had on Julia.  Her journey has been unique because she began at such a young age. She was only 2 when she was diagnosed with Wilms' tumor.  She didn't fully process what was happening in the beginning.  Sadly, it was the only life she knew.  She doesn't remember her "BC" days (before cancer). As she got older she asked lots of questions and understood procedures and medical terminology way beyond her years.  That's what happens when the preschool you attend is an oncology clinic.

It was an amazing thing to watch as she strung her beads.  She suddenly felt ownership over everything that happened to her.  With each bead, she was telling her story of her journey through cancer.  She has a tangible way to share everything that she's been through over the past two years.  As she walked around the hospital she found new things she wanted to talk about.

The change in her spirit was incredible.  I witnessed it all day, but was absolutely floored when we were back at home tonight.  After dinner I was setting up all her medical supplies for her cesostomy flush, irrigation, suppositories, etc.  Usually Julia starts to cry and plead as soon as she walks in the room and sees the setup.  Tonight she sat down, lifted her shirt, opened her tube, locked in her access, opened the line, put in the syringe, and started pouring in her own solution!!

I was sitting across the room in absolute shock! She looked at me and said, "Mom, I'm ready for my next courage bead for doing my own flush." If that is not a testament to the power of this program I do not know what is!! This is the first time Julia has even been willing to touch her cecostomy button.

Julia has been recovering well.  This week she is moving around much better and feeling healthier all around.  She is still up several times in the middle of the night for several hours at a time.  The past few nights it has been difficult to determine the cause.  Tonight as we talked about our day before bed she said, "My belly really hurts at night.  That's why I can't sleep." I asked her why it only hurts at night.  She said it hurts all day, too- she just tries to ignore it.  Poor Julia.  It's hard sometimes when your kid is tough as nails.  You forget that they are hurting.

Before bed she picked up her beads and said she was taking them to bed with her.  She told us that watching the glow-in-the-dark beads helps her fall asleep and when she wakes up during the night, holding the beads will help her to not be afraid.

Wednesday morning we had back to the hospital to talk with GI.  Dr. Fortunato will be making the plan for how we are going to use Julia's cecostomy.  Right now we are still depending on the stimulant laxatives in addition to the flush.  We need to get her off these drugs and find a safer solution. In the afternoon we are meeting with KidsPath again to discuss Julia's future nursing needs.

Check out the article from the local newspaper.

Click here to watch the video segment on News 14 Carolina.

You May Live With a 7 yr old Boy If...

You leave him unattended for an hour, only to find the entire downstairs booby-trapped with trip lines and fake grenades...

(His sister also has this same skills, crazy enough.  Not only did they lace the downstairs with trip wires and grenades, they also taped all the light switches, and hid the scissors! Better sleep with one eye open.)

He can turn any activity into a game or a competition...

Marine-pride and baseball heroes adorn the walls...

You own multiple football uniforms...

Slippers come in camoflauge and are kept next to a pair of combat boots...

Going to bed requires some sort of headgear...

(And before bed discussions include his account of the location of Mt. Suribachi and its significance in world history. I think he could pass the AP World History exam soon.)

Sunday afternoons are spent at Revolutionary War reenactments...

Warmer weather always means a game on a field somewhere...

There are legos everywhere you look (and step)...

We love you, Carter!

March 25

This is a date that will always stand out in my mind.

Today is Julia's 'cancerversary'.  It was two years ago, today, that a routine visit to the pediatrician's office turned into a direct admission to the pediatric oncology floor at Brenner's hospital. It is hard to believe it was two years ago, but at the same time, it is hard to remember life before cancer. I try to take these moments to look back and really reflect on our journey and how far we've come. Even just since last year, so much has changed.

I never imagined her two year anniversary would be spent recovering from her 7th surgery. Our slow climb out of cancer treatment was filled with so many positives and fresh starts.  It is hard to look back and realize that began to slowly slip away.  The past six months for Julia have been so tough from a medical standpoint.  We worked so hard to protect her young, innocent spirit for that year she was in treatment.  We fell like we had crossed the finish line and kept it together for her sake.  But after so many successes, I feel like all that is slipping away. I know we will be okay and I know we will get through this, but we never dreamed it would be this hard two years later.

I always take some time on this day to listen again to the David Crowder Remedy album that we listened to that day and really talk to God about where we are now. It was a tough conversation today. We have so much to celebrate, but still so many struggles ahead. Our emotions are all over the place lately. We have confidence this is all part of His bigger plan.  At times it is just so draining.  We are definitely pushing forward ready for some positive news.  We are ready to see the light in this situation, though we know deep down the road is probably long. I am again at a place of surrender.

Lord, I surrender to you the pain Julia has been through.

I surrender the anguish and guilt I feel being the one inflicting pain daily.

I surrender my fleshly inadequacies that prevent me from offering hope, healing, grace, and comfort.

I surrender the scars both old and recent that everyone in our house wears. We can't heal these, but You can.

I surrender any assumptions I may have made in my mind of what our life now would look like.

I surrender any presumptions I have made in trying to plan.

I surrender my plan for her medical care to Yours.

I surrender it all to You again.

These are burdens I cannot carry.  Their weight is too much to bear.  Their holes I cannot fill. Their wrongs I cannot right.  Their answers I do not have. Their promises I cannot make.

I lay it all down in exchange for Your peace, comfort, wisdom, strength, and mercy. You are the answer to all our shortcomings and worries.  The words of DCB's Remedy ring so true... 

Here we are
Bandaged and bruised
Awaiting a cure
Here we are
Here You are
Our beautiful King
Bringing relief
Here You are with us

So we lift up our voices
And open our hands
Let go of the things
That have kept us from Him

He is the one
Who has saved us
He is the one
Who forgave us
He is the one who has come
And is coming again
He's the remedy

Oh, I can't comprehend
I can't take it all in
Never understand
Such perfect love come
For the broken and beat
For the wounded and weak
Oh, come fall at His feet
He's the remedy

God, thank You. Thank You for the gift of every new day.  Thank You for the time we get to spend with both our children.  Thank You for good health and the blessing of healing. Thank You for Your grace and mercy with each new day. Thank You for Your sovereign goodness in ALL things. Thank You for the gift of spring after every winter.

Thursday Appointments

We slept through the night last night!! Yahoo! It took some work to get her to sleep, but after 11pm she was out for the night. I had to wake her at 8:30am to head to the hospital for her appointments.  I pulled back the covers to get her dressed and every time I reached for something else, she pulled up the covers and said, "I'm not done sleeping yet." Oh, how I know that feeling!

We had another morning of early phone calls from Brenner's.  Seems Julia's doctor's have made more appointments for tests and office visits.  April is filling up fast.

We started off in Dr. Pranikoff's office.  The wait is typically over an hour and today was the same.  We passed the time playing games on the itouch, while her new favorite turtle, "Princess Queenie" decided to play on the computer...

Her exam went well.  She wasn't thrilled that everyone wanted to see her cecostomy.  Usually in this office we "just talk" and she was not pleased with a change in that plan. First they checked the site for healing.  I have to say the prayers of our hundreds of prayer warriors are being answered. From the outside at least, we are seeing some healing.  The wound that has drained and bled around the clock every day up until yesterday was much drier today. They were all happy with what they saw.

Then it was time for a flush.  Julia was not a fan.  The yelping began, "hurt, hurt, hurt!"-  over and over, until they came back in the room 10 minutes later with the stuff.  We are now putting in 200cc's instead of just 10cc's. They are unsure if this will actually have any affect.  From what we know her colon only responds to stimulant drugs.  Even traditional enemas have no affect. They told us Dr. Fortunato will make the next decisions as far as flushing solutions, but for now, 200cc's at a time.

Then we headed out to the desk to make her next appts. Julia returns to the surgeon in May to have the tube changed out for the first time.  At that appt I will be trained how to do it myself.  Then they had to call GI to get her back in up there.  Their response? Mid June! Yeah... no. Fortunately the check-out administrator was totally on board with what needed to happen. We have been playing the GI waiting game for the past year.  We have been told by numerous doctors, that she needed this surgery asap for six months.  Now we finally have the tube and we aren't going to use it?! I'm not thinking so. Fortunately I didn't have to say a word.  She had this situation completely under control and was not backing down.

Her appointment is on Wednesday.

Then we went upstairs to see Ms. Stacy and touch base. Julia was happy to see her and excited to see Nurse Diane who came in for a hug.  Our oncology staff have been so wonderful.  When Nurse Diane and I were catching up on the phone last week, she kept saying over and over, "It wasn't supposed to be this way.  Poor Julia.  We feel so bad for her.  It wasn't supposed to be this way." Unfortunately, cancer and its ugly treatments don't play by the rules.

Then we headed down for a quick lunch in the cafeteria.  She was all smiles by now and making friends in every hallway and elevator.  

Our afternoon appointment was at KidsPath. It couldn't be a more welcoming place. With the beautiful backdrop of spring it was like a castle...

The kids were right at home and loved being there immediately.  They were playing in one of the many playrooms in no time.  We were given a tour of the facility.  The kids were captivated by every room they entered and eagerly talking about what they would play next time they were here.  One of their favorite places was the outdoor garden.  What an incredible setting! It is hard not to feel like a kid, full of imagination, in a place like this...

We talked for a while and set up their next appointments.  Both kids were freely talking and playing by the time we left.  I am very encouraged that they will finally have an outlet for their recent emotions and those from the past few years.  I can feel a weight being lifted from within.  It is challenging enough to care for a child with cancer.  Handling their emotional needs can be overwhelming.  Throw in those of their siblings and you can feel the pressure grow.  Parenting is hard work in any circumstances, but parenting with a life threatening illness/ chronic disease gets complicated quickly. As I stood in that garden, enjoying all the fresh blooming trees and flowers, I couldn't help but think about how this is such a new start for all of us, too. 

A Picture Worth a Thousand Words

That pretty much sums up today.

Julia woke up at 4am because of pain.  She awake until about 7am, when I finally convinced her she needed to get some more sleep.  She slept until 8:30 when I had to wake her and dress her to go to a dentist appt. Ugh, I know.  Fortunately both my kids adore going to the dentist and it was just a simple cleaning.  She was resisitant at first and stood in the corner of the office with her arms crossed.  I don't blame her.  She is SO over being the center of attention, especially because it almost always results in something being done to her.  The staff were great.  They are all very understanding of Julia's situation.  During treatment, when her counts were low, they would even have her come in when the office was empty to avoid extra germs.  And they lovingly sent her care packages and feel better cards.  We love you all you guys, and Dr. Lindsay and Dr. Krissy.

After that we headed home for a low key day.  Nothing more taxing on the schedule than TV, board games, and snacking.  We both got a little nap this afternoon while Grandpa and Carter hit the driving range.  We finished off the last of her daily procedures around 9:30pm and finally had her settled in bed by 10:30pm.  She is starting to battle us for control on anything she can possibly manipulate.  Tonight it was the wattage of her nightlight bulb and her sleeping location.  After much trial and error, the nightlight is on, but behind the end table, and she is asleep on the guest bed.  Whatever works.

Praying for a good night's sleep.  Tomorrow we start the day at Dr. Pranikoff's office.  Then we head to see Stacy for a ChildLife session.  Then we meet Carter after lunch for their first counseling appt at KidsPath.  It will be a full day, but hopefully we will make lots of steps in the right direction.

Pray for Healing

We are still here. Julia has been doing pretty well. She is moving around now and finding ways to do the things she enjoys.  It has been fun having Mimi and Grandpa here for some fun entertainment and a welcome distraction.  She had a great time with Princess Ariel on Sunday and is still talking about it. Such a special treat!

We are at that place in her recovery where frustration and limitations rule her emotions.  I had forgotten about this stage from chemo until yesterday when it all came flooding back.  The wonderful thing about kids and medical issues is their resilience and determination.  In their minds, children are not limited by their diagnosis or situation.  Every day they try their best to do as much as they can and to seize the moments they do feel good. They don't feel sorry for themselves or tell themselves they shouldn't be able to do something.
Julia wants to feel better and is trying to do her normal activities, but she's not quite there yet so she screams, and yells at people that try to help, and gets frustrated when she can't do something.  Yesterday, I was doing school with Carter, thinking Julia would just watch TV or play with my mom.  Not so much.  She wanted to do her work, too.  I knew that was a bad idea.  I tried to talk her out of it with no luck.  I decided to let her and keep it super simple, but even basic things like coloring and cutting were too much.  It was not enjoyable for anyone involved.  Her frustration and anger were flying in every direction.

Overall, she is feeling stronger each day and is able to move around more.  We've been trying to stay away from the pain medicine as much as we can because of the bowel and bladder side effects it causes.  She has done really well even without it.  Her pain tolerance is incredibly high and she just amazes me in her ability to press on.  We usually end up giving it to her only once or twice a day at this point.

We have been trudging on with her daily procedures. I have a checklist for every day and we work our way through.  It has been a huge blessing having my mom here to help restrain her as we're doing things.  She always reaches a point where she starts grabbing my hands or kicking, just out of instinct, and I don't want to hurt her or do any sort of damage. She is still having the same amount of pain.  She still screams.  She still resists and fights back.  She hates every second of it.  Her cecostomy wound site is still leaking around the clock.  It still leaks stool and bleeds throughout the day and night.  She can't stand having it cleaned or having me touch it every day for flushes. It still looks so raw and sore. I pray we see some change in it soon.

That is our biggest prayer request right now- for healing.  Pray that her wound heals.  Pray that we are nearing a point where we can actually begin to use it for its intended purpose.  Pray that her colon heals with time and her body can function once again.  Ultimately (besides staying cancer-free), that is our biggest goal right now.  The doctors have done what they can do and now her body has to heal, her colon has to regain its muscle tone and original form, and her GI tract needs to operate in sync again.  We know all of this lays in God's hands and we pray it is in Julia's future. As I go through the motions of all these painful procedures and hear her heart-wrenching wails, it is all I can think about... Lord, please let this all work. 

Also please pray for preservation of Julia's urinary health.  She has walked a fine line through this cancer journey and Dr. Hodges has done a wonderful job in being as proactive as he can to give her the very best outcome he knows how. Right now he is nervous.  When I spoke with his nurse, Megan, last Friday and she began emailing him, he had many concerns.  They had us set-up for at-home catheterizing in a matter of hours, in addition to his other concerns.  Nurse Megan has called me daily to check on Julia and get status updates.  Today I received a call that Dr. Hodges had setup kidney studies and appointments for Julia in April. 

It is strange to be in this place again of the hospital calling to tell us when all our appointments are before we even know we have them.  April looks to be a full month for us at Brenners'.  Julia will have 3 different urology appts, her oncology physical, her 3 month oncology scans, a geneticist appt, a GI appt, and a surgical appt.  And these are the ones we know of so far.

On a positive note, we received word this week that our family will begin receiving services from KidsPath- our local palliative care center.  This is such a blessing during our current trials.  Both the children will receive counseling in a ChildLife-type setting.  It has been so hard to know the best way to address all the complex emotional and intellectual needs both our children have right now (in addition to the physical demands).  Everything is just so extreme right now that is hard to even know where to begin.  We are overwhelmed. We will also have a pediatric home health nurse to help us handle Julia's medical needs and help walk us through this process. It is so reassuring to know we will have a liaison between us and all her specialists to help us provide the best care we can for her at home as we learn to adjust to our new realities.

Julia slept for 14 hours straight last night and woke up ready to do something new for a change.  She wanted to get out of the house. We started in the backyard.  It was such a beautifully warm spring day.  She loved being in the sandbox with Carter and Grandpa.

She even tried her hand at swinging.  Even though it hurts, she pushes through the pain.  This is why these kids don't need physical therapy.  They are their own PT! She has always, and continues to amaze me.  The same toddler who was swinging on her belly just days after a radical nephrectomy with an 8in incision across her belly, was today pumping herself on the swing.  That's Superhero Julia for ya!

She wanted to leave the house and go somewhere.  We decided to give it a go.  A trip to Feeney's makes everyone smile. She was so happy to be out of the house. 

She didn't last very long and we were definitely pushing her endurance toward the end of our outing, but seeing this smile again was completely worth it.  Even if it was only for a moment.

Thank you so much for all your kind words, cards, emails, care packages, meals, flowers, visits, and prayers for our family.  We are so blessed to be so loved and cared for and thank God every day for all of you!

Never Normal

We have had two years full of "new normals" in our house.  With every change things are tough, but eventually it just becomes our new way of life.  It is really hard to see that in this new place.  I just don't see how this could ever feel normal.

Friday night I had to cath her for the first time. She has had it done so many times, she knows exactly what is happening. I have always hated watching it be done to her- so personally violating- and now I have to be the one doing it.  I knew it wouldn't be easy because as much as she does lay down and accept it, she is also very strong and fights back hard. 

I had everything out, all the different steps and sterile procedures.  I tried for a while without success and realized it was not going to happen.  I called in Emily, my emergency backup.  Even she had a tough time.  Every one's anatomy is unique.  It took both of us and all our strength to make it work and we were sweating in the end.  It rips my heart out to here her screaming and choking like that. I do not look forward to doing this by myself.  Honestly, to do it well and comfort her at all, you would need like eight arms.

I got her settled again.  She is resistant to comfort afterward and doesn't want to talk about it.  She was finally settled in bed by 10pm and I am happy to say she slept through the night.  She was feeling pretty good when she woke up at 10am.  She seems to be recovering slowly, but surely.  She spent much of the day on her feet.  Sitting is uncomfortable and getting up and down is hard.  She did the best she could to play with Carter, even if it meant leaning against the window and watching him outside. She was excited to have some visitors today.  It helps take her mind off things and give her something to look forward to and that feels somewhat normal.  She and Chloe happily painted and played this afternoon.  So sweet...

The hardest parts of our day are the procedures- cathing, wound cleaning, cecostomy flushes, bathing, diaper changes, and suppositories- she screams through every one.  I hate that we have to do this.  Every few hours, there is something else to do.  And there is no end in site for several years.

We made it through bath last night and were moving toward bedtime.  She had not peed since 4pm and the clock was ticking.  She was laying on my bed while I cleaned up the bathroom and she fell asleep.  I just couldn't wake her up to do it.  I decided to put her to bed and give her until midnight.  I checked her every hour and they were dry every time.  Finally at midnight, she was wet.  I have never been so happy about a wet diaper in my life.  So now I can go to bed.

An hour later I was woken up by a little voice next to the bed.  She couldn't sleep.  My guess was she had a bad dream or was scared, but she wouldn't say.  She crawled into bed and cuddled into my arms.  I was so happy just to hug her and try to make it better. When she is in the hospital or going through procedures she does not usually want any sort of extra comfort.  I was so thankful for that opportunity even for just a moment.

After a while it was obvious she wasn't falling back to sleep.  She said she wanted to watch TV, so back to the couch.  She was clearly agitated, but satisfied watching Noggin.  She kept asking for snacks and drinks, but was still upset about something.  She started crying around 4am that her stomach was hurting really bad.  I gave her a dose of hydrocodone and we finally went to sleep at 7am.  So here it is 11am and we're sleeping.

The good news- some friends have arranged for "Princess Ariel" to come visit and entertain her today! She is very excited.  Her friend Claire is also coming to see her.  And Mimi and Grandpa are coming in town for a few days.  Hoping to brighten her spirits in the midst of all the pain.

A certain attention-loving boy is VERY excited about company...

Friday, at least I think it is...

I have decided to stop uttering the words, "I'm looking forward to a good night's sleep." It backfires every time.

We had Julia ready for bed last night.  She took the pain medicine and was definitely very tired.  As she was sitting beside me on the couch I noticed her shirt was stained.  Her cecostomy wound has been weeping all week, but this was different.  She was actually leaking stool around the button.  I changed her shirt and she soaked through it.  We did the same thing twice more.  Her abdomen was also distended and hard.  I called the after hours line for the surgeon.  I spoke with Dr. Petty and he said it was okay to continue giving additional doses of laxatives (she has not gone since last weekend), but if the swelling continued or she ran a fever we needed to come to the ER.

I gave her more laxatives and kept her up in hopes she would go.  By midnight she was exhausted and still hadn't gone.  The swelling was better, so I decided to let her sleep and checked her status and vitals every hour.  By morning I was feeling the hospital was inevitable.  She still had not gone and had not peed in 22 hours.  Whenever her colon is full it compresses her bladder.  We've had this problem before.  As I prepared to start packing again, she finally went some.  It was enough to keep us out of the ER and allowed her to sleep until 11am.

She woke up feeling okay.  It had been 12 hrs since her last dose of pain medicine and she was in pain and crying, but not out of control.  I spent the morning contacting the surgical nurse and her urologist to find out what they wanted done.  Dr. Hodges is actually out of town at a conference.  His nurse was wonderful emailing him back and forth to get answers.  He is very upset he was not contacted while she was inpatient to address all these issues.  She also should not have been given toradol, considering her single-kidney status.  He does not want her to go more than 4 hours without a wet diapers (except for overnight).  If we continue to allow her bladder to stay that full she is going to start refluxing back into her kidney.  This will compromise her chances of ever regaining normal urinary function in the future.

Dr. Hodges decided I need to be trained and equipped to catheterize her at home whenever the need arises. This would mean a trip to Winston-Salem for supplies and training this afternoon.  We tried to use the pediatrician's office, but they said they are not equipped nor trained to do that. I asked the nurse if I could just have someone come pick them up.  She was hesitant, but finally agreed because my dear, peds-nurse friend Emily can train me at home.  Thank you God for arranging the little details like that. Training has been done and the supplies are ready.  Hoping not to have to use them too often.  Sadly, we are about to approach a 4 hour line, and her bladder is very hard and bulging, so it will likely be tonight.  Sigh.

The surgeon said the leaking at her wound site is normal when her colon is full and we are not using the cecostomy for daily colon flushes.  As long as we can get some results with laxatives they are fine with the status quo until her appointment next Thursday.

So the week rolls on.  It seems so wrong that the weather is so incredibly gorgeous and we aren't even going outside.  I really hope it hangs around by the time she's feeling better again.  The days are just starting to run together.  We are awake a lot of the time when it is dark and we sleep during many of the daylight hours- quite the nocturnal bunch around here. And we are rapidly turning into our own medical center.  Here are all the supplies that arrived today. Crazy. I'm thinking at the bottom of one of these boxes I'm bound to find a nursing degree. Crazy.

It has been a long week.  Carter is coping, but the stress of what is happening to his sister and the absence of any sort of schedule is hard on him.  Julia seems to get a little better each day if it weren't for the additional complications we keep adding.  She is learning to do a little more each day.  Still a lot of frustration that this is 'the road after cancer'. The statistics love to tout how far the survival rates for kids' cancers have come in the past 70 years, but no one likes to talk about what happens to these kids afterward.  Sadly, it is not a pretty site and it is a lifelong experience as some side effects are almost immediate and other late-effects come on in adulthood.

We are also mourning the relapse of another Wilms' warrior.  I was blessed to get to meet Emma and her parents at the Wilms' Tumor Symposium in LA last November.  She is such a strong girl in every way and talented at many sports.  She has spent the last nine months getting her life back and enjoying her passions.  At her 9 month scans yesterday they found a mass on her liver and another in her abdomen. (You saw their family here in my posts from the Symposium.)  My heart is just breaking for her and her sweet family that they have to give up the normal life they have enjoyed for the past few months and prepare to fight the battle... again. God please heal, sustain, comfort, and encourage them. Facing cancer is one of the hardest things children and families ever have to do.  Being told you have to fight again and fight harder is overwhelming.

And another Wilms warrior, little Hannah, who was in treatment for relapse has just received the sudden news she starts bone marrow transplant next week, even farther from home than her relapse treatments. God we pray that you hold Hannah, her mom Tanya, her father, and all her siblings in your hands as they are thrust down this new path.  We know you go before them and are arranging all the details.  Please carry them all along the way.

Thursday Update from Home

It always takes me the first few minutes of these posts to figure out what day it is.  I seriously have no concept of time at all right now.  Something like having a newborn.  Our sleep and wake times have very little to do with night and day right now and everything just kind of blends together.

We had a rough night last night.  Julia wanted no part of taking her pain medicine last night.  By that time all the toradol she may have had left in her system was gone and the afternoon dose of pain meds were long gone.  She was a mess.  She refused to take the medicine no matter what we tried.  I have mixed hydrocodone with everything I can find- orange juice, grape juice, ice cream, ICEEs, fruit punch- you name it we've tried it.

Now I really don't understand that in a country like ours where any flavor can be created we have yet to use that technology on children's narcotics.  Because think about it, if you have a kid who requires narcotic drugs, the chances of them being reasonable and cooperative are next to nothing.  And to make it worse she has to take 1 1/2 teaspoons.  Can't we concentrate this stuff? It's more than you can force down their throats without getting a fountain back in your face.  If the drug makers were smart they would make it into sour gummy worms which are rolled in sugar anyway or dum-dums.  I have yet to meet a preschooler who won't devour either one of those. In the meantime I wouldn't drink anything you find on our counters, it's probably laced with drugs.  Though I started to wonder in the wee hours, as I had to finger-tip taste each of the samples to find one that works, maybe the rest of us should take it if she won't, then we won't notice the crying? Just kidding :)

We never got it in her last night.  There are so many things we have to force her to do right now that this is not one.  We work with her, but do not forcibly restrain her to get it down.  She finally fell asleep around 11:30pm on the couch.  She's too sore to get up the steps and being carried is excruciating, so she and I decided the living room would do.  She woke up screaming around 2am because the pain was just too much.  I spent the next few hours trying to get as much of the medicine in as possible with very little luck.  She was finally asleep again around 6am and we slept until 9:30am.  Poor Carter is so confused. He hates seeing his sister in so much pain and the Mic-Key button on her belly along with the blood and oozing is a lot for him right now. He was very sweet to just sit quietly and watch the two of us sleep this morning.

When she woke up the quest began again to get the medicine down (the pain meds plus the 3 other daily meds).  Thanks to Dr. Tom's advice we decided to go with the "Mary Poppins approach"- grape flavoring at the pharmacy and a packet of splenda in every teaspoon.  I am happy to say that it finally went down and within an hour she had eased down onto the floor to play with her brother.  Night and day difference! The afternoon was better because her pain was much more bearable.  Unfortunately, in the case of abdominal surgery- muscle pain, soreness, inflammation, and pain- ibubrofen products would be a much better solution, but we can't use them because she only has one kidney.  I feel so sorry for her having to go through life this way without being able to relieve headaches, muscle pain, cramps, and sprains effectively.  Cancer really stink, but you probably already knew that.

I was able to do her cecostomy flush today.  She screamed, but held still long enough for me to get it done.  The home health care service called today and all her medical supplies will be delivered tomorrow.  I hope it goes as smoothly as it seems so far.  The hospital set it all up and since she has met all her insurance maximums for the year, that is one thing we don;t have to pay for- yay! For the next week will will just stick to simple saline flushes to keep the line clear.

She has been trying to get around.  It is a very slow process as she hobbles around the house and leans against thing to hold herself up, but she is figuring it out.  She actually figured out how to get up the steps herself, too. It takes along time, but she trudges through.  I really admire her courage and determination (okay, maybe not so much when she's fighting me to take her medicine). She finally had a bath tonight, too.  Her first one since last weekend.  Thank you Shana for your ideas to set up all the stools.  It worked. We are all hoping for a quiet evening of mostly sleep.  Wish us success at her 10pm pain med dose. If it works, we may just get some sleep. 

Wednesday Hospital Update and Home

Julia had a great night, Tuesday.  We actually both slept for the entire night! First time in over a week! I expected her to be in a great mood this morning.  Yeah, not so much.  She woke up ill at the world.  She wanted nothing to do with me, the nurses, the surgeon, anyone.  Not a good way to start the day when you have a big checklist to get to discharge day. I ate breakfast, took my shower, and just left her alone.

Around 10am, Cree- the therapy dog arrived.  This was supposed to be the highlight of her stay. Julia remained stoic, but we pressed on.  Cree's handler/owner, Ms Teressa, brought along a storybook all about Cree, her life, her home, her puppies, her interests.  Julia was intrigued.  Then Cree hopped up on the bed to be cuddled and brushed.  Julia's mood started to lighten up. 

 Now, Cree's favorite thing to do is tricks and games, but that means going out in the hall.  I didn't see any chance.  We asked and Julia said, yes!  First time out of bed all week.

I sat in a chair with her in my lap while we watched Cree sit, bow, roll, spin, and pray.  If you've never seen a dog pray, you're missing out :)

Then it was time for fetch.  Cree prefers to always bring the ball back to a child, so Julia was soon in on the game.

We played for quite awhile and then Cree needed a rest. They said she needed to walk.  Guess who stood up on her own to hold the leash? Yup, Julia.

In no time she was walking Cree up and down the halls herself!!! 

We stopped by to check in on Vinny who was getting chemo and he joined us in the hall, too! The amazing power of dogs to enable kids to overcome their pain and nausea and press on.

Then Emmy joined in on the fun.  It was like we were at a park, instead of the peds oncology unit.  Well, aside from the presence of Darth Vader, of course.  Jeff (our wonderful counselor) dresses up Vinny's chemo pole every visit so he doesn't get scared of the drugs and he has someone to have light sabre battles with.  Jeff understands what's really important when you're seven.

By now Julia was feeling liberated and wanted to enjoy her freedom to the fullest.  We headed down to Arts for Life with Ms. Molly. It was painting day- perfect. Julia, Emmy, and Robbie had a great time painting, chatting, talking about their favorite snacks, and discussing the best ways to choke down yucky medicine.

Julia finished the flowers she started with Ms. Betsey...

One of their new projects today was making a star collage and surrounding each star with a list of the things that make them happy.  Julia's list for today...

"playing with Cree, doing art, Ms. Betsey, painting, eating rolls,

playing with Vinny, Ms. Stacy, my nurses, Nurse Karen, ice cream, 

watching movies, drinking ICEEs, playing in the playroom, and ice water"

Happy is an understatement.  These things all have the power to heal, like nothing else that was being offered.
We had a quick lunch out in the hall, and were surprised to see a huge bear from Sodexo (the cafeteria service) in the lobby.  They were setting up a station for make your own ice cream sandwiches!!

This day just keeps getting better and better :)  Then we headed to the playroom to play My Little Ponies, games, and puzzles. Then the surgical nurse arrived for our afternoon appt and called Julia back to her room.  There was much wailing and gnashing of teeth.  I finally had to scoop her up and carry her back.  It wasn't a pretty sight.

First order of business? Find an oral pain med.  Julia has gotten tremendous relief from the toradol, but it is contraindicated in single-kidney patients- so her few doses are now done.  She has never been a fan of the taste of codeine and has chosen to suffer instead of swallow it, numerous times.  She can never take motrin products because of the one kidney, so our options are limited.  Tylenol isn't going to cut it, so the last try was lortab (hydrocodone).  They promised her the taste was better than codeine.  After much coaxing and discussing, she decided to try Emmy's method of adding some Capri Sun.  I am happy to say she drank it.

Second on the list? Flush the cecostomy.  This did not go well yesterday.  Julia screams whenever anyone goes near it.  I am SO happy we practice the flushing on Lucy the doll last week so I don't have to try and figure it out on Julia.  Her abdomen, the button, the stitches, the incisions, and the wound are all very sore and she doesn't want anyone near them.  Not good when you're the one that has to open, attach a tube, flush it, and close it.  Thanks to the wonderful distraction from Ms. Stacy, I was able to do it with her sitting in a chair.

Third on the list? Stitches removed from the site.  Yeah, not so fun.  I decided sitting her on my lap was the best bet because she is really strong when she wants to fight back and it's easier to restrain her this way.  Fortunately the surgical nurse was fast. Stitches are out now...

Fourth on the list? Take the IV out.  Easy after everything else she's been through already.  Then she wanted to sit in the chair and paint suncatchers.  She told us she was done with the bed and not getting back in it. While she painted I signed discharge papers with her awesome nurse, Summer.  Then Ms. Stacy spent some time painting and talking with her while I took all our stuff out to the car.  Julia is having a lot of apprehension about the thought of daily colon flushes.  She told Ms. Stacy about it and cried.  They didn't have any major breakthroughs besides just getting some of the feelings out.  She hates that this is what everything has come to and I have to say I do, too. It was such a blessing from God to have her in the room at that moment when I could hide her from my own tears.  Thank you Stacy. We love you. 

We hung around for a couple hours because I had a meeting to go to in the hospital tonight.  While we waited we were actually on the receiving end of one of our Kids of Childhood Cancer Foundation's outreaches.  Every other Wednesday the inpatient families on the floor receive dinner of their choosing donated by Olive Garden.  As a blessed recipient can I just tell you what an amazing gift this is to receive. Just one of the small things being done to make tough stays more bearable.  Another outreach is stocking snacks and ready to heat meals in the family room.  Sometimes late at night, a peanut butter sandwich is just the pick me up you needed. So thankful to be a part of something so wonderful touching hurting families in a tangible way.

Then Julia and I headed upstairs for our meeting.  I am excited to say that the Triad is getting their own CureSearch Walk this fall!! (date to be confirmed very soon) CureSearch is the #1 organization in ped cancer research.  They fund the COG hospitals which treat 90% of all kids in cancer treatment, like ours.  It is an incredible organization that sets the standard for protocol research for other medical fields (Ironic, I know. I won't go there now.) If better treatments and cures are going to arise, they are going to be from CureSearch/COG research.

Being in that meeting tonight was one of those moments.  Here I am sitting with one of our oncologist, other oncology parents, and the director of the SE region for CureSearch- while in the stroller behind me lies my daughter just out of surgery, recovering from yet another hospital stay.  She has been out of treatment for 16 months and is cancer-free- yay! Yet, the pain, suffering, and treatment continue. We're still here. And her best case scenario after two more years of further treatment is to hopefully regain her bowel and bladder function, but there are no guarantees. And she is one of thousands.  Is there really any questions we need better treatments? Of the 46 kids diagnosed with cancer just today, 12 will die and  28 will suffer long term side effects and/or secondary cancers CAUSED by their treatments. and that is the case EVERY single day to the tune of 13,600 new cases this year alone.

That pretty much sums up our passion and calling right now- raising money for pediatric cancer research and caring for the families in treatment at our own hospital. Both equally essential. And while all of this is going on there is somewhere else we had wished we could have been this week.  Tomorrow is Reach the Day in DC.  CureSearch sponsors this day to allow pediatric cancer families to meet with their reps to discuss the issues surrounding kids' cancer research.  My awesome, rockin', Wilms' mama friend Christy is there right now with her daughter Eve.  Read her post to get a good idea of her mission for tomorrow. Then pray that justice prevails and nobody has to get hurt.  It's all very simple.  We just need to use our hearts and our heads and do the right thing.  And don't tell me that costs too much because here's a very promising answer that costs nothing. 

By the end of the meeting Julia was spiraling downhill.  The last hour before her next pain med dose is the toughest right now.  Dr. McLean was so sweet offering to help do or carry anything to make her feel better.  But unless he has hydrocodone in his pocket, we have to head out for help :) Though I think it would be very useful for peds oncologist to have pain med-laced lollipops :) (I have a future for your dum-dums, Christy!)

Putting Julia in the car seat was a nightmare.  Poor thing.  Her abdomen is so sore.  All the muscles hurt.  She has an open weeping wound.  And the device now protruding from her belly hurts if you even brush against it. We headed out to find a 24hr pharmacy and were very thankful for drive thru even though the wait was long.

We are now home, meds on board, and sleeping on the couch.

Please pray for Julia's continued healing and relief from pain.  Pray for us as we learn to adapt to her current restrictions and discomfort. Pray for our daily flushes just to keep the button clear. Pray for Carter as he deals with all the drama in his life right now and being homebound for the next little bit (not his favorite thing). Pray for insurance ease as we are setup with home health care next week. Julia goes back to see the surgeon next Thursday to find out what the next steps will be in this process.