One Day at a Time

It has been a week of ups and downs.  We are recovering from the initial shock of last week and learning to find a place for this new information in our daily lives.  Sometimes it feels like something we have known for a long time, other times we let it go and focus only on the present, and other times it slaps us in the face and overtakes our emotions. Sadly, that is the reality of cancer.  I think everyone who completes treatment has a hope somewhere that they are finished with cancer and will walk remission for life.  Hearing the information we did last Thursday forced us to let go of that dream and accept a new reality.  We are again in the world of uncertainty where we have to find a way to make a new normal again.

This week has been up and down, but we are finding our way.  We have made time with our friends a priority.  They are a healing balm to all of our souls and fill us up in a way we cannot do for each other.  Looking at this picture I can still here the belly laughs of these two crazy boys.  They had some full on fun that morning and could not have been happier.  There is just something about little boys...  

The kids love when Daddy gets home from work.  Every afternoon they want to analyze when I think the exact time is that he will come through the door.  Their anticipation and excitement is precious.  daddy graciously jumps into their world and pretends right along with them.  Whether it be vet's office, my little pony, marines, or cowboys.  Such a good sport...

We have been savoring the simple pleasures of summer- candy sweet cherries...

and heaps of tomatoes.  We just found a new recipe to roast them for caprese salad.  It is divine! (It's on my recipe blog.)

Daddy has been busy getting my laptop up and running.  The screen was on the blink and eventually died.  I had to use it hooked up to a desktop monitor and the battery no longer holds a charge.  Fortunately Daddy knew just what to do and was able to disassemble it and replace the broken parts.  So happy to be up and running again.  I still can't watch when he does this.  I don't like to see bodies, cars, or computers open to the outside...   

Our local theaters offer free movies to the kids in the summers, so I took the kids to see Charlotte's Web with some of their friends. 

We had 15 kids at the movies with us- 7days old to 6 years old!It was so cute to look down the row and see dozens of tiny little faces with their feet dangling off the chairs...

Then we headed to Costco with a bunch of them in tow for lunch and errands.  Little Ava slept through the whole thing.  Don't you wish you could sleep like that?

We have lots of wonderfully tiring playdates...

which has made everything easier.

We are still working on Julia's laxative meds.  The oral ones seem too strong.  They cause hours of loose stools and stomach pains.  She begs me not to take them.  We switched to suppositories only and have been having some success.  We will consult with GI Monday to see how they want us to proceed.  We have been researching other Wilms' cases and survivor resources, but keep coming up empty.  There are some cases of bowel obstructions, but nothing quite like her case.  We are also going to check-in with radiation oncology to see if they have any advice or insight.

On another health note, I was able to follow up with my cardiologist this week to find out where I stand since coming off the beta blockers I take for my SVT.  Unfortunately, he does not want me trying any more medications and I am still having bouts of tacchycardia.  At this point I will be given a 3 day heart monitor in mid-August and will then go over the results with an electrophysiologist to see if I am a good candidate for ablation surgery.  This is not at all what I was expecting, but I knew it would likely be in my future at some point.  As much as I don't want to have to have it done- a cure would be wonderful.  I am trying not to think about it for now.

So here we sit, still in the midst of this storm (or several storms).  We are finding more evidence of God's face shining through the darkness and uncertainty.

Mostly through faithful quiet time, continuous praise music, the love of our friends, the prayers of many, and the blessings we find in each and every day.

We are truly blessed to have friends to walk beside us, share our burdens, lift us up when we fall, encourage our hearts, hug us when we need it, and intercede on our behalf.  My Bible study girls took the time to pray over me, our family, Julia, and our situation and God has so faithfully met us right there.  We trust that God knows exactly where we are headed and he will meet us there.  We are exercising our faith muscles and practicing abiding daily.

We still fall.  We still fear.  But we stand on faith.

Father-Son Camping Trip

Last weekend, after patiently waiting for two months, the time finally came for the boys big camping trip.  Daddy and Carter were both looking forward for some time to get away from it all.  Carter was so excited to camp, fish, hike, swim, and play.  He carefully packed all his gear, making sure to be prepared for anything.  The weekend forecast didn't show any rain, but unfortunately there were triple digit temperatures! Poor guys! It didn't seem to affect anyone's anticipation and excitement...

Unfortunately their accommodations did not include A/C...

It seems that no matter how hot it is the fascination of a campfire never fades...

A great way to cope with the heat...

Casting his new fishing rod...

Cooling off in the lake...

A quick game of football...

Little Braden was wiped out...

The big boys were still going strong, soaring to new heights...

Followed by a sunset game of kickball...

After a night of profuse sweating and some sleeping, they headed out for a hike..

Topped off with the sweet reward of a mountain stream waterfall...

Now that's refreshing!

Cancer Moms (author unknown)

I belong to a special group of women

My friends and I have an amazing bond.

We never wanted to be in this group,

yet we are in, for life.

Maybe we have met, maybe we haven’t,

Yet our love for each other is boundless.

We know the pain the other one feels,

And we share our victories small or huge.

Words like chemo, IV, Zofran , scan day

Are always parts of our conversations,

As well as roadrage, tears, and meltdowns…

We always know where the closest puke bucket is ,

We can hold it in one hand and if necessary,

Swallow the sandwich the other hand was holding.

We can drive to the hospital,

Park in the dark parking garage

Make our way thru the halls of the hospital

To the appropriate floor with a mountain of stuff,

Settle in a room, turn the TV on,

And give instructions to the nurse,

Silence loud beeping IV pumps,

Direct a wagon AND an IV pole

To the playroom without hitting anything

Make our way back to the correct room

And all this, mind you,

With our eyes closed at any given time.

We know how to draw blood from lines

sticking out of little kids chests.

We can hold them down with one hand,

While a ng tube is inserted in their little nose,

And be on the phone with their dads at the same time.

We can live for days on hospital food,

And on maybe only one meal a day.

We know the names of up to 20 different drugs,

their purpose, dosage and time to be taken.

We are always on call, 24 hours a day,

Seven days a week.

We are used to not always looking our best,

Hard to do with only a few hours of sleep.

Make up, hair styling, skirts are words of the past .

We have become addicted to blogging;

hospital, clinic, home, wherever…

We "talk" sometimes at all hours of the night;

we know we can count on someone to be up.

Then for one of us , the world stops .

She has to walk away, broken.

This job is over.

The job is over, but the fight is on.

Remember, I said we were in this forever.

We are friends, sisters, temporary nurses.

We are each others rock, each others punching bag.

We listen, we vent, we cry, we laugh together.

We share our lives and our deaths.

We share our pain and our victories.

We are strong, but not by choice.

Sometimes we win, sometimes we lose,

But never are we defeated.

We are not nurses,

we are not doctors,

we are cancer moms…

Prayers for Skye and her Family

Please pray for sweet little Skye Getter and her family.  She has fought a grueling four year battle against Wilms' and cannot fight anymore.  Please pray for her family as they prepare to send their baby home.

And as her mom always tells us, "HUG YOUR KIDS.  Only God knows how long he's loaning them to us for."

We spend a lot of time just cuddling on the couch around here because the kids request it.  Schedules, cleaning, errands, showers, and chores can wait.  Our kids need us and our love.  That's the way God intended it to be.

Walking Wounded

This new place we have found has been very unsettling.

When Julia was in treatment our lives were turned upside down and watching her suffer and fight was so hard on everyone.  Now the battle is over, but the wounds remain.  Her curls have grown back.  Her paleness has faded.  Her energy has returned.  Her weight is back to normal.  Her port is out.  The masks are put away.

But the wounds and scars remain.  We have spent the last two months finding our footing again.  Regaining our confidence to rejoin the world again.  Taking the risk to actually plan ahead.  Resuming school work and routines in our house.  Reestablishing discipline and chores.  It has been difficult at times, but also exciting and we are trudging through.  But now I just feel so frustrated.  From the outside she looks fine, but inside is a completely different story.

We have been struggling with all her bowel issues for over a year, but now that we realize just how severe the situation is, the reality is hitting hard.  And now that they have her on laxatives full-time, our lives have once again been taken over.  The oral laxatives cause her to have repetitive watery stools.  Sorry to be graphic, but we are talking volumes of horrible liquid.  We go through at least three outfits and eight diapers a day- that's a pack every 3 days!  That's $150 a month in diapers and medications alone. The suppositories work well without the watery effect, but the process causes her to curl up and cry in pain.  I hate this for her, but we have to empty her system.  There is no choice.  I just can't stand hurting her more and I hate to see her suffering with this.

Today we went to the pool for a few hours and she went 6 times in the reusable swim diaper.  The diaper fortunately contains it, but then everything has to be hand washed and put back on.  Not to mention her, the floor, the sink.  It is exhausting for everyone.  I can't bear the thought of her having to give up swimming for another summer.  Cancer has already stolen one summer from her.  I cried quietly all the way home.

I am so mad at cancer right now and so sad at God.  Cancer is relentless.  It entangles and snares, invades and hides.  It changes the game and the rules constantly.  Do you know how many times we have heard and how many kids we know who hear over and over, "This isn't a normal case."  "How rare."  "We don't usually see this."?  I hate cancer.  I just want to scream and cry.

All the events of the past week just remind me again and again that we have to let go of all of our expectations.  Whether we admitted it or not we had hopes and expectations of our life after treatment and bowel incontinence and spots on her lungs were not part of those.  But that is where we are.

I was reading the words recently of a young father who just lost his battle to Ewings Sarcoma today.  He died at the age of 25, leaving behind his wife, 3yr old, 1 yr old, and thriving ministry.  He and his wife talked about how they repeatedly found themselves having to go before God and lay it all down on the altar.  Everything that brings security aside from Christ is fleeting and temporal- your spouse, children, career, home, ministry, health, family, and friends.  When your security is found in these things, your world can be easily rocked.  Our confidence, hope, and peace belong in only ONE place. 

So I continue to look up and cry out, clinging to His reassurance.

“I've told you all this so that trusting me, you will be unshakable and assured, deeply at peace. In this godless world you will continue to experience difficulties. But take heart! I've conquered the world." John 16:33 MSG

The Words We Never Wanted to Hear

(**NOTE: If you are local, please do not share this with your children.  We are not talking to our kids about any of it until their is definitive news to share.  And we do not want them to hear it secondhand from another adult or child.)

Today was Scan Day.

Our day started bright and early.  Early, is usually good though, since Julia can't eat anything before her ultrasound and she figures that out really quickly.  Carter was excited to be spending the day at Daddy's office and packed his backpack as soon as he woke up... PSP, a tank, a blackhawk, a flashlight, Unusual Jets of the Cold War DVD... a normal workday.  He was ready.

Julia and I had a sweet time of worship on the drive to Brenner's.  We have been listening to Psalty CDs lately.  I loved Psalty as a kid and am so eager to see them fall in love with the songs, too.  It still amazes me how deep some of these songs can be and how much spiritual truth is in the simplest words.  Today we were rocking out to "If I Were a Butterfly".  And they say texting while driving is dangerous, have you tried doing an alligator with your arms?! Anyway, the chorus really hit me...

And He gave me a heart 

And he gave me a smile, 

He gave me Jesus 

And He made me His child.

It just sums up so well, that God has fully equipped us for this life to bring Him glory.  When we have those four things we should count ourselves abundantly blessed and prepared for anything.  Psalty, you rock! 

I had some quiet moments to pray on the way in was happy the day was finally here.  As I scooped her up and carried her in she wrapped her arms around my neck and laughed.  It made me weepy to think where we were heading.

We started in radiology at 9am for her chest x-rays and abdominal ultrasound.  They came out pretty quickly to get her.  She is such an old pro at this.  She walks right back with the tech herself, hops up on her stool in front of the machine, and takes a deep breath with her arms out.  

We finished in a few minutes and she told us to head upstairs.  I asked about her ultrasound and she said to wait in the lobby until they were ready.  After about 20 min, one of the receptionists asked us why we were waiting.  I told her and she said they did not have an ultrasound scheduled.  Interesting, since it's been scheduled for 3 months and you guys called to confirm the tests last week.  We decided to go upstairs and talk to them instead.  

Nurse Nancy met us in the back and I told her what had happened.  She was on the phone in seconds.  They denied having her on the schedule and said they couldn't do it today.  She was fired up by then.  She is such a gentle, sweet soul and probably doesn't even weigh 100lbs, but when she means business, look out.  She fought with them for a while to no avail.  To make a really long story short, Brenner's recently switched to and ancillary scheduling service.  What? I know, weird.  So now, when the 9th floor wants to schedule something with the 7th floor, they have to call someone in a totally different building-- and for all we know different city.  (Sounds like the banking and IT world.)  Makes no sense to me.  So when they transferred from the old system to this, they moved hundreds of appointments and some got lost. How nice.  

Nurse Tammy took us back to check Julia in.  She has grown so much since we started treatment.  They love to see the gains and the curls bring a smile to everyone's face.  Smiles are priceless in the clinic.  There were so many babies in treatment this time.  It was actually hard to maneuver in the waiting room because of all the infants in their walkers cruising around.  It still breaks my heart to know cancer is limited to just kids, babies are victims, too.

 Julia was excited to see Ms. Betsy and pulled up a chair at the art table.  They made bling-covered sunglasses and inside the lenses they drew a picture of where they wish they could be.  For Julia, it was the beach.  I am so happy we are going soon!

 They called us back to a room and one of the new med students started her physical.  She really did a wonderful job and spent a lot of time discussing all of Julia's recent issues.  

I forgot just how much has happened in the past 3 months- 3 bouts of stomach flu, heat exhaustion, dehydration, 2 colds, a UTI, and her lingering bowel incontinence.  She left to brief Dr. McLean and the social worker came in to say hi.  She kindly offered Julia some ice chips and apple juice- the breakfast of champions for NPO kids :)  You would have thought it was an ice cream sundae, Julia was so thrilled.

Then Dr. McLean came in to talk and do Julia's physical.  In case I haven't said it in a while, I love this man.  He is so patient, kind, humble, thorough, intelligent, and a great listener.  He said Julia looked great overall and they were happy to see her healing and getting her general health back.  We talked about her bowel issues.  He said they don't see it very often at all.  Usually the opposite is the problem and he didn't have a lot of advice to offer.  He was really intrigued and  wants to do more research.  He said Dr. Hodges assessment sounded right and is hopeful that function will return in the future.  Besides the resident, he also had a molecular research phD student with him.  They spent some time going over Julia's case, treatment, and what they look for in follow up.  They like to bring them in to put faces and cases in their minds before they head back to the lab to do research for new treatments.  I think that is a really impressive idea and was happy to be a part.  Dr. McLean is very passionate about St. Baldrick's and pediatric cancer research and does everything he can as a doctor to push it forward.

As we sat and talked we had a chance to discuss our recent pediatrician frustrations.  He had some good advice and agrees we need to be up front with them and find out who in the practice is able to handle her case.  He was very supportive of being proactive and advocating for the best care.  We reviewed all her labs from Monday and for the first time since before cancer 15 months ago, her counts all look good.  There are a few small fluctuations, but overall everything looks great.  Her white blood count has finally rebounded into the normal range.  It took 9 months, but she has made it to the low normals.  Yay!  He gave me copies of everything and we were getting ready to go when he brought up her chest x-ray and pulled out copies of the report and x-ray.  Dr. McLean is a strong advocate for records access and always gives us copies of everything for ourselves and lets us see anything in her computer records we want to see.

He handed me the sheet and said, "There are 3 small spots on her lungs."

 

Time stood still for a moment and I lost feeling in my arms.  It took everything in me to listen to him speak.  Fortunately, he notices and slows down as he talks.  He pointed to three tiny white spots on the x-ray.  He circled them because as he says, "Only the expert eyes downstairs can see everything they need to see in these."  At this point the spots are 3.5mm which is very small.  Two of them were seen in the April scan, but it was not pointed out to us until they appeared again today.  So what does all this mean? Conclusively, not a lot.  The spots are so small that they do not warrant further invasive intervention unless they grow.  So there are no easy answers.  He reassured us that it did not mean definitive relapse and we need to just wait and see.

Now it was back to the ultrasound issue.  Dr. McLean and Nurse Nancy decided we needed to do this today.  Julia has been fasting now for over 19 hours and we don't want to have to do this again.  So they decided we should just camp out downstairs until they could take us.  They finally took us back just before 2pm.  Poor Julia was so hungry.  I finally offered her a lollipop just so she had something.  Our favorite ultrasound tech, Calista, was out and the two girls left were totally slammed.  They said they were two days behind just on the inpatient kids.  Apparently the ancillary schedule is not working well so far.  She finished and we waited for the initial review to tell us we could go.  

She got a "clear" and we headed to the cafeteria.  We will call up to the floor tomorrow when the complete report comes in.  She was so happy to finally eat.  She has some of the craziest food preferences, but at least it was food...

 So the rest of the day has been spent processing all of this new information.  This is one of those conversations I've rehearsed in my head many times and now I've heard the words said aloud.  It still hits me anew every time I hear myself say the words.  It is a very slippery slope to let your mind go there with all of this.  We can't get ahead of where we are today.   It is true in our daily lives, but especially in these situations, God's grace for today is like a shelter in the middle of a raging storm.  Every time we try and walk out ahead of ourselves we are pummeled from all sides.  We do not feel peace again until we stand in the shelter of today.  I confess I have stood in the rain a handful of times tonight alone, with the same result every time.

It has been a glaring reminder of how we create this bubble of expectation and illusion of control. Even in the cancer world, we get comfortable when we think we can predict our own futures.  But we can't, no one can.  In one of the first conversations after we received the news I said to a friend, "It looks like that lesson in abiding and trusting in faith is not short term, but for life." We have to continually be willing to lay it all down before God daily.  When fear and anxiety rise to the surface, we have to take it back to the only place where we can exchange it for peace.  This is going to be a true test of faith for the next 3 months.  October 14th seems like SO far away.

So for now we pray and trust.  We want them to be just scar tissue or to disappear.  The radiologist said the bottom one could potentially be the end of a vessel.  We have to wait and see.  When Wilms' tumor/nephroblastoma relapses it usually shows up in the "tumor bed" where the kidney was removed, in the opposite kidney, or in the lungs.  Julia's original CT, at diagnosis, did not show any spots in her lungs.  The difficulty here is that we don't have regular CTs because of the dangerous radiation.  We are also looking into her body more than you would a normal person so you are going to see things that wouldn't have otherwise ever been seen.  With knowledge sometimes comes confusion.  Every time I look at her I keep telling myself, she is the same today as she was yesterday and so is God.  For now that has to be enough.

When we got back in the car to go home today, Psalty started to play again.  The song, Father I Adore You, came on and Julia said, "Mommy, this is the song you sing to me at night when I'm scared."  God knew what my heart was beginning to feel.  And it was my precious 4 year old who eased that fear and pointed my eyes in the right direction.  Thank you.

Birthday Bonanza

We know it's summer around here when the birthdays start in rapid succession.  It starts around Memorial Day and continues in full swing until after Labor Day.

It is such a blessing to celebrate each of these special people in our lives.  Our cup just overflows!

It starts with Annmarie who turned 33...

Then Julia turned 4...

Then Rachel turned 5...

Then Cooper turned 6...

Then Kendall turned 3...

Then Ava turned 1...

Then I turned 34...

Then Emily turned 30...

Then Jack turned 4...

And it's not over yet! We still have a handful more to go before fall.  The kids quickly took to asking, "Who's next?" and there was always one just around the corner.  Who doesn't love a birthday party and the chance to celebrate the special people in your life?

GI Monday

We spent the day at Brenner's on Monday.  It has been a long time since we were there for a whole day like this.  We started on the 9th floor.  A local church group was doing a beach party for the oncology kids and their siblings.  They were very sweet and spent a lot of time really getting to know each kid.  Their fun decorations, props, and music really brought a party feel to the floor.

Julia loved the fishing game.  The volunteer had a great sense of humor and had her catching all sorts of crazy things.

Carter is always looking for an eager and willing board game opponent and found one easily.

Julia prefers play-doh to competition. Though she did play a few fierce rounds of Hungry, Hungry Hippo.  They had a bunch of Mr. Potato Head pieces to add to their play-doh creations.  The sweet little girl at the table with her made the entire cast of Toy Story.  Her figures were really impressive.  I wish I had a picture!  

While the kids were happily playing, I had the chance to meet with Jeff, who heads the 9th floor support program.  Some parents from our floor started a non-profit recently to help improve the lives of our families.  I am so happy to have the time to join the board now and do what we can to help our Camp Brenner families.  Some of the most pressing needs right now are the lack of working TVs and DVD players on the floor.  Any of you who have worked in these type settings now how tough simple things like this can be.  There are lots of rules about electronics, compatibility, approvals, inspections, codes, etc. that add hurdles to every process.  But, we are cancer parents and we eat hurdles for breakfast so we are not giving up! 

While we were on the floor we had a chance to catch up with all our favorite doctors and nurses.  They will definitely be our forever family.  Nurse Karen was so excited to see all of Julia's hair.  She actually has a new haircut, too and the two of them look a lot alike these days :) I'll have to take a picture Thursday. They decided to go ahead and do all her labs while we were there so we will have them back to discuss on Thursday.  We got the urine done with no problem then headed into the lab for the blood.  Let me just say Julia was not giving it up without a protest.  Sh is so clearly a child out of treatment these days.  The same child who laid completely still for IVs, port access, and chemo lets everyone know she does not want to do this anymore.  She still has to and we all proceed as if she weren't yelling at us :) The nurse and I both laugh because it is such a good thing to see these kids get their fight back and their desire to be free of all this.  The funny part is, once she gets her band-aid she turns and smiles, says thank you, waves, and blows the nurse a kiss.  You crack me up Julia!

We spent some time in the playroom playing with the kids and talking to Stacy, our favorite ChildLife specialist.  We had a big load of donations from our family and friends and there is nothing more heartwarming then to help out our favorite floor.  I love to see the surprise on her face.  We will always give back and encourage others to do the same.  We want to pay forward all the love we have received.

As usual the kids were excited about eating in the cafeteria.  They love the wealth of choices.  We finished our food in time to play on the rooftop playground before Julia's next appointment.  Carter is happy to finally be welcome back at the hospital.  It was tough on him the past year with the H1N1 lockdown that prohibited siblings from being in the building at all..

Finally, we headed to GI for Julia's appointment- a little anxious but eager that the day is finally here to talk about what's going om with her. 

 The afternoons in clinic are busy, so we waited in the room for a while before a med student wandered in.  When the doctors are held up, they come in to talk.  He was actually really good and took a great history and notes of her situation.  When Dr. Goodman came in, she seemed upbeat.  She did her exam and said her belly feels soft, but her lower abdomen is completely full of stool.  She can get it all through, but it doesn't leave her body.  We reviewed what has been happening the past two months and she said they have reached a few conclusions.  Julia has been on the daily miralax now for several months and consistency is not an issue.  We have cleaned out her intestines on several occasions ruling out lingering impaction.  The problem is she lacks the physiological ability to empty her bowels.  So, Dr. Hodges was correct last week.  Julia's bowels no longer function normally because of the damage caused by 8 days of full abdomen radiation.  Bowel incontinence I believe is the technical term.

It was discouraging to hear the conclusion, but I was eager to hear what the next step was.  The doctor looked at me and smiled and said, "We just have to have faith.  We need to believe that her body will heal and find a way to function.  We see this often and after a few years something happens and things start to work again.  You just need to hang in there and have faith it can happen." I actually wanted to laugh, not in a mean way, but because God has been teaching us that lesson for the past couple years.  I don't know why I would even question that that lesson always applies in medicine, too.  That said, the doc was over the moon excited to find out Julia was "pee" potty-trained.  Apparently they did not expect her to be either.  So, we will celebrate that milestone and just accept the rest.

We did not talk about the "what-if" part.  They don't want to go there yet because this is such a slow process.  So for now the next step is to stop the miralax and give her stimulant laxatives daily to force her body to do what it can't.  They will see us again in three months to reevaluate.  So the diapers and pullups remain.  Can I tell you how many times in the last two years we have told ourselves we were buying diapers for the last time? Unfortunately, this is going to be a long process.  It makes me sad, but because I know she feels somewhat responsible.  It has been hard for her to not be able to take swimming lessons or gymnastics because of wearing diapers.  It breaks my heart every time she says, "I will try and do it so I can go."  She is able to participate in some events for her age and they make an exception because this is now by definition "a disability"- hopefully short-term.

I sat down with her this morning to talk about what was going on and why her body doesn't work like it should.  It is not an easy conversation to have to tell her what the radiation did to her while it was saving her life in language fit for a four year old.  How do you explain that we used high-dose radiation laser beams, directed at her entire abdomen, designed to damage the DNA of all her cells? Anyone?  I know, I hear the crickets, too...

Radiation therapy is such a double-edged sword.  On one hand I am SO thankful the doctors at our clinic and the Tumor Board knew without a doubt that she needed radiation.  It was such a shock to us and we resisted initially, until we understood the aggressiveness of her from of cancer (anaplastic nephroblastoma/Wilms').  We have seen so many children in the past year at other hospitals who only received the light protocol, only to relapse a year later. Sadly, most of them eventually lose their battle to this disease.

When it comes to cancer you get one really good shot at it and after that the odds drop off fast.  Chemotherapy agents attack every dividing cell in the body in an attempt to kill cancer cells, wherever they hide.  Any cancer cells that survive chemo, mutate to become even stronger and therefore difficult or impossible to kill.  That is why radiation is added in so many cases.  The doctors had to ensure there were no lingering microscopic cells in Julia's remaining kidney or abdomen.  I still remember Dr. McMullen (radiation oncologist) sitting down with us saying, "We have to get this right the first time.  We don't want any regrets."

So that is our GI bowel retraining plan for the next 3 months.  We go back to see them in October.  Thursday morning we report to radiology to start scan day...