Tube Change

I knew it was coming and have been dreading it. Every three months we have to take out Julia's cecostomy tube and put in a new one. The entire process is very upsetting to her and makes her so anxious. I hate seeing this pile of stuff, knowing I am going to have to upset her, hurt her, hold her down, and hear her scream. It never gets easier.

Before we started she opened up and was talking to me about how she feels about all of it. I was so proud of her for naming her feelings like that. KidsPath counseling has been such an asset to her emotional progress. Thank you. Kate!! She decided she wanted to participate in the process this time. We decided to start with a few lessons.

This is what a mic-key button looks like (used as g-tubes, c-tubes, etc). The door that opens on the bottom is what you can see on the outside. The tube goes through the hole in her abdomen. The balloon at the top is inflated with saline once its in place to hold it in (and deflated to pull it out). She did well with removing the old one, but then started to panic about putting in the new one. Fortunately I moved fast and was able to get it in one-handed. I was so proud of her for overcoming her fears and starting to take control of her situation. She's come a long way!

Unfortunately, we still had to burn off the granulation tissue around the opening with silver nitrate. She still abhors this process, so we mildly sedate her. It knocks her out, but then the pain wakes her up. She fights back, but isn't quite as strong. It still takes two of us to hold her down. By the end we are all shaking, sweating, and exhausted. I hate that all of this has to be a part of our lives still. We are supposed to do it every 2-3 weeks, but I put it off longer this time because I wanted us to all be able to enjoy the holidays without any trauma. Needless to say, it was long overdue and a lot of tissue had grown. It took Billy and I both using our full strength to restrain her and finish the process. Then I held her as she cried and whimpered herself to sleep. It makes me hate cancer a little more every time.

Sweet dreams my brave little warrior. I pray God erases these memories from your heart and mind. I love you and am so proud of you! 

Medical Updates

It's been awhile since we've had a health update which is a good thing.  Unfortunately we have not completely avoided doctor's appointments.  Julia's nightly cecostomy flushes have continued to go well.  She gets upset sometimes about having to sit in the bathroom so long every night, but overall is accepting it as just a part of her life.  She has the procedures down and can do most of it herself now.  They are still taking anywhere from an hour to two hours.  This has been hard some nights because she is just so tired and wants to go to bed.  I hate hearing her cry and beg to "please let her go to sleep". It makes me angry all over again that her cancer treatments left her this way.

Last week we had one long night of her flush failing to work.  After several hours everyone's nerves were shot and at 10:45pm we just threw in the towel and let her go to bed.  At this point in addition to the medication, her colon had been pumped full of 3 times the amount of saline.  I was expecting a mess by morning.  It never happened.  The next day, nothing all day.  I was nervous when we started the procedure again.  If it didn't work, we'd be off to the ER.  Fortunately it did.  We considered it a fluke and let it go.  Then Thursday evening, it happened again.  Not a good sign.  Fortunately she had an appointment the next morning with Dr. Hodges (urology).  I decided to let him be the one to take action.  I hated to go in with a bad report because everything has been going so well. 

We- okay, actually "I"- made the decision a few weeks ago to let Julia try wearing underwear during the day.  She has been under Dr. Hodges orders to stay in diapers for the past few years.  Her thickened and over-reactive bladder last fall led him to believe it was likely she was going to need extensive therapy to re-potty train. As her "momcologist" :) I decided that when she expressed her desire to "please be allowed to wear panties"(at the age of 5), I was going to let her give it a go and just see what happened.  She had tremendous success and has only had 2 accidents in 2 months.  I knew my executive decision needed data to back it up if I wanted it to be accepted.  Nurse Susan to the rescue! We began using a "hat" in the potty to measure her urine output.  It's crazy how much she enjoyed the challenge of filling that thing as full as she could.  We continued to follow the "must pee at least every 4 hours rule" and tracked her output for a week.  Turns out even though she has a bladder the size of a watermelon, she is consistently emptying it. I was hopeful Dr. Hodges would be pleased.  So off we went with our data in hand and problems tucked away in our pocket.  

He was very excited about her success.  Yay!! He also said we can try and take her off of the daily prophylactic bactrim antibiotic.  She has been taking it for over two years now- during treatment to prevent pcp pneumonia and for the past year to prevent UTI's.  Now that she is controlling her bladder and her colon is being flushed, we are praying the chronic UTI's do not return.  The only way to find out is to stop it, wait, and see.

Then we moved on to the cecostomy flush failures.  He decided to call Dr. Fortunato (GI) and get an action plan.  Unfortunately after two attempts he wasn't getting any response.  He looked at me and said, "You want an x-ray, don't you?" He read my mind.  For two reasons.  1) She is at risk of bowel obstruction at any point in life because of all the abdominal radiation she has received.   2) I want to know if her colon is impacted.  Fortunately they have radiology in their office, so a quick trip down the hall and we had the answers.  No obstruction, but a full colon.  We left with instructions to get through to Dr. Fortunato.  They decided we needed to double her medication and double the volume of her saline flushes for the next 4 days and call them on Monday for a plan.  This is not what we want to hear.  It is our hope to get her off the colon-stimulating drug or at least start to wean it back.  Doubling it is like a kick in the gut..... literally.  So we wait. 

Julia was so funny when we left the appointment.  "Mom, that trip was easy-peasy.  They didn't ask me to do anything hard.  Too easy." Apparently as crazy as her medical life has been this year, she is up for the challenge.  I don't think she deemed this one worth the travel time and copay :) I just pray this becomes more the norm.  I'll take non-invasive any day.

And as for me, the past few months have been up and down. I spent the late spring feeling really poorly and multiple doctors were at a loss as to what the specific problem could be.  It was discovered in July that I had adrenal insufficiency.  Seems the adrenal glands are not a fan of constant stress levels.  Mine decided some time after Julia's last surgery to hang it up.  I was put on supplemental adrenal, a regimen of vitamins, and an increase in my salt and water intake.  I had been doing some of these for the dysautonomia, but it wasn't enough.  I am now consuming 4 packets of salt a day, in addition to salt on all my food and drinking around 100 ounces of water.  I am happy to report that my blood pressure at last check was finally up to 100/60.  So much better than 60/40, but still low. I am beginning to finally feel better, but I know it will be a long road as my body heals.

I also had an MRI for the increasingly worsening back pain from the past few years.  It was discovered I have a tear in one of my disks and degeneration in another disk.  That explains a lot.  At least there's a reason I can't tie my own shoes.  I am trying 6 weeks of medication and physical therapy to see how things go.  It seems cancer takes a toll on everyone.  Sadly, it is a family disease and the ripple effects stretch far and wide.  On a good note we are all in counseling right now, too and everyone is making great progress.  We are so blessed to have such an amazing team of counselors, doctors, nurses, and caregivers. 

Well Check

Last week, Julia had her 5-yr well check.  These are still a bizarre thing for me.  When your child practically lives at the hospital and it takes two hands to count all their specialists plus your toes to count all their surgeries, going to something as normal as a well-check feels odd.  I still remember calling while she was on treatment two years ago to ask if I needed to even make one.  She had cancer, after all.  She wasn't "well".  The answer is yes.  So you go to these appointments to talk about the normal things- the stuff the specialists don't cover.  And in a way you pretend they don't/didn't have cancer.  Weird.

It is awkward as a mom.  All we talk about is height, weight, development, and happy things.  There are no protocols, surgical plans, painful procedures, or dangerous consent forms.  By this point in the game we are all "momcologists" and manage our child's care and medical history with ease. These appointments just don't fit in that box.

Regardless of the ease of the appointment, Julia was not a big fan.  She is still having issues from her last visit to the surgeon.  We haven't been able to fully resolve her sleep issues, yet and ease all of her stress and anxiety.  It's been a one step forward , two steps back process.  She stopped sleeping a few days before the appointment, after her last trip to the surgeon.  I was hopeful she would be fine once we got there.  When she dug in her heels and fought back about standing on the scale I knew this wouldn't be easy.  Kids with chronic medical conditions often seek out every chance for control they can find.  This is one.  She finally conceded after I gave her "the look" and she knew this wasn't going to go down her way.  Then they tried to do the eye and ear exam.  She plays "the listening game" all the time at the ENT, so I was optimistic.  Nope.  Can't make her participate and she knew it as she sat with the headphones on and arms crossed.  She finally came around.

When we were taken into the exam room, the nurse decided they wouldn't prick her finger today for a CBC since her last one was only 6 weeks ago. Yay! I had made her a checklist of what was going to happen at the appointment. After checking the first 4 boxes, she now could cross one off.  She was a little more cooperative. The actual appointment went well.  He was impressed with her growth- almost 5 inches this year, and her development.  We didn't talk at all about her bladder issues or her cecostomy which was very unusual.  It was like the big elephant in the room.  She was naked with just her diaper and her tube hanging out of her stomach and we went along like it wasn't there.  I have to say one of the hardest parts about this off-treatment, pre-survivor place is that no one is overseeing her complete care.  On treatment, oncology played that role.  When she reaches 5 years and is considered a survivor, she will be seen by a doctor who specializes in that- but for now it is just piecing together all these complex parts and in essence, I am her doctor.

We did talk a lot about her fear/stress.anxiety issues.  He was pleased that she was receiving such wonderful counseling and assistance at KidsPath, but he also offered us an array of medications to help- melatonin for sleep, clonidine and chloral hydrate for us to use before painful procedures at home and at the hospital.  It really helps to know we have more options now to help her long term with the hurdles that lay ahead.

Then it was time for shots.  Julia was quite worked up about the idea of getting them.  It turns out she only needed one- the DPT/IPV combo.  The doctor does not want to give her any additional vaccinations unless her blood titers show they are needed.  She screamed up until the nurse put the needle in her leg, then she looked at me and said, "That really doesn't hurt.  I don't know why people get so upset about shots.  I could get a 100 in one day." Can I tape record that?! I honestly don't think she remembers regular vaccines.  We tried to explain it but she has too many painful frames of reference in her mind. Her anticipation was eased when she received her goodie bag and lollipop.

And all was well at her reward lunch at Cici's...

A few days later we returned to KidsPath for her counseling and home health nurse check.  She was excited to be there and eagerly participated.  Possum has rejoined our family again.  Apparently she hasn't had enough of trips to the Wal-mart...

I think the truth is she heard we were going to the beach and wanted to hitch a ride on vacation.  Julia decided she needs to go and dressed the possum in a bathing suit, sun hat, and water wings...

 OH MY!!

 So for now she hangs by her tail on the door and waits...

Julia's daily flushes have been going well.  One of the frustrating parts that remains is the 70 mile round trip drive once a month to the specialty compounding pharmacy.  They aren't able to mail it to us because it trequires refrigeration and they can't give us more at a time because it is not very stable.  The good part is we can do school in the car at least...

 We have had a few slumber parties recently which quickly turn in to potty parties.  It is such a treat for her to have company and her friends think nothing of it.  They just pull up a seat for some popcorn and a movie...

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.

Planning Day at Brenners'

Ya'll should be proud.

I didn't have to make a scene today at the hospital.  We headed in this morning and started with a pitstop in the oncology clinic.

I guess I need to back up a little further.

After Julia's repeat UTI incident earlier this week, the ante was raised yet again to make something happen as soon as possible.  Apparently my call to Dr. Fortunato's nurse last month for a reality check put some sort of urgent flag on Julia's chart.  When the endoscope clinic turned the page to their 2011 calendar we were one of the first people on the schedule.  Julia is slotted to be admitted to the hospital on January 10th. We also found out this procedure is way more than we anticipated.

Julia will be admitted for a week.  We begin Monday with starting all the lines- IV, cath, NG tube, etc. Then proceed to scans and tests.  They will also start a 48 hour "go lite" full system flush on her.  After an evening and morning of NPO, she will then go into the OR on Wednesday to have all the colonic monitoring lines and equipment put into place.  She will then have to lay immobilized for the next 24 hours.  If the readings are successful she will be discharged sometime in the evening on Thursday.

We had no idea this was a week long process, so that explains some of the difficulty in scheduling.  As it turns out this admission overlaps with her next oncology clinic appointment and scan day.  So pour JuJu is now going in for the full overhaul.  In an attempt to streamline the testing, minimize the trauma to Julia, and please the insurance company, we are going to try to compile everyone's wishlists into one grand plan.  Poor JuJu is getting "the works".  It will be amazing if it all comes together.

So back to today.  We started in the oncology clinic to get their list: CBC w/diff, CMP, abdominal ultrasound, chest CT,  and urinalysis.  Then we headed to the peds clinic to see Dr. Fortunato.  The poor guy.  If I had any doubt that things were as crazy as his nurse said they were, he was the poster child for her case.  I don't think he had slept, showered, or shaved in several days.  We got right down to business and he agrees this is the next step.  He was worried I would be resistant, but after almost two years of this, we are ready for action.  My one requirement was that she be put on prophylactic bactrim during this interim period.  It doesn't take a doctor to figure out that her UTIs run in 30 day cycles which would put us back in the ER roughly around Christmas Eve.  With our track record that would be right on par, but we are breaking the mold this year and wish to spend our holidays at home and not in the ER.  I think the docs and nurses are just charming and fabulous, but we have used up way more than our allotted turns.

He agreed on the bactrim, but wants Dr. Hodges (urology) to prescribe it.  He said that's not his part on the team.  I totally respect that.  He then took the list from oncology and said they would make it happen.  His nurse was on the phone with the other departments before we even got out the door. In the end it may mean she stays a little longer in the hospital, but once all the lines are in I would rather she just get everything done.  Her CTs will require IV and I'd rather she not have to repeat that a few days later.  It also makes much more insurance sense.  Once her $200 admission is paid everything is covered.  If we go back in for a CT scan, we pay $200 again.  I really appreciate that the doctors care about these things.

Once the tests are complete, Dr. Fortunato will decide which surgery she needs and it will be scheduled likely the following week.  At this point he is leaning toward a cecostomy tube (as is Dr. Hodges).  He said he hates that he has to do this to her, but he feels like we have given her body all the time and grace we can and unfortunately the problems have crossed the line.  We are feeling complete peace about everything.  I know the week in the hospital will be a doozy, but we have exhausted all our other options at this point.  Right now I am actually thankful that we have until January.  We have a full calendar of Christmas activities and fun with our friends, family, church, and hospital.  We plan to travel to PA for several weeks with the family before we come back to the hospital.  We are looking forward to a healthy and full Christmas.  Dr. Hodges nurse called back to tell us she will be on bactrim for the next year to prevent UTIs.  Now that we have covered that base, we feel much more comfortable with waiting a few more weeks.

We have started to talk with Julia about what will happen in January.  I'm trying to stick to the basics right now.  I don't want her to have to dwell on it over Christmas.  She has had a few questions and seems satisfied with the answers.  Today while we were waiting in the exam room, she was intrigued by the diagram on the wall.  We have no explored the entire digestion process and all the organs in the abdomen.  Really makes you think about eating in a whole new light.

We were thankful to be leaving after such a short visit and excited about a day full of Christmas events ahead of us.  As we walked out, we went out a door we rarely ever use.  The parking garages were so full we had to park near the roof.  As we went out the doors, admiring the helicopters on the landing pad, I turned and was surprised to see Vinny and Sarah on their way in. I love when God does that! This is the very same spot were we ran into Nicholas and his family when we were both discharged surprisingly early from sick admits!

Vinny was heading in for another day of chemo, unfortunately Sarah also had to conference with Dr. McLean today.  It was discovered last week that Vinny has relapsed on treatment again.  His lung tumor is continuing to grow and has invaded his pulmonary arteries.  I can't even bear to think that this precious friend of ours is running out of medical options.  We are so blessed for the past year he has been given.  After relapsing in November 2009, he was given 2 months to live.  But Vinny's body does not follow the rules.  Never has.  He has endured intense treatments, severe side effects and complications, and has been put on and taken off hospice, yet he continues to fight back.  God has been very good.

We were just thrilled to see them and get a chance for a real life hug.  Sarah had our new bracelets for our foundation's fundraising.  When she handed me one, Vinny said he and Julia needed one.  He asked what it said, and we told him is was the website so people could read about them and other Camp Brenner kids on their computers.  He said, "Does it say I hate cancer?"

In our eyes, "Yes, it does."  We all hate cancer.  It is the reason we will never stop fighting, never stop advocating, never stop reaching out, never stop helping, and never stop praying. 

For a split second, as Vinny and Julia scampered along the window ledge and admired the helicopters outside, you could pretend these were just carefree kids.  And then we said goodbye as they headed up for chemo and a conversation that no parent ever wants to have, we headed out for our break before the next surgery.  Please lift up Vinny and his family in prayer. We encourage you to hang a gold ribbon as part of your Christmas decorations this year.  Every time you notice it, please lift up one of the thousands of courageous cancer kids.

Growing Frustrations

Ironically enough the overwhelming gratitude we've been happily bathing in is getting some unwanted jolts of frustration.  I have not updated about Julia's medical situation because we have been in a holding pattern of waiting.  A very long and frustrating pattern.

When we met with Dr. Fortunato (GI) in September, he set the deadline of December 3 for when he would make the decision to surgically intervene or not. He gave us a new regimen of daily medications that includes three different laxatives everyday.  Things seemed to go okay for about a month and then we reached the point where even all the meds combined didn't work.  In late October when she ended up in the ER with a severe UTI and partial blockage, the game changed.  When Dr. Hodges (urology) discovered her colon was still impacted, the plan was obviously not working.  As a result of her enlarged, inactive colon her bladder is now being compressed and is under stress.  It has thickened, is over-reactive, and no longer effectively controls urination.  He was adamant that she have surgery asap to put in a cecostomy tube.  She will need long term bladder retraining, biofeedback, and physical therapy to hopefully repair the urinary issues. The problem is none of that can begin until the bowel issues are addressed, hopefully in around a year.  He also reiterated repeatedly that the longer we wait, the more damage we are causing.

Knowledge is power but it is also frustrating.  We know what needs to happen, but we have no control over the hospital's scheduling.  We called Dr. Fortunato to relay what was going on and proceed to the next step.  They told us she needed a colonoscopy to assess the area and determine if they will be doing a cecostomy or a bowel resection.  They referred us to the GI endoscope clinic and told us to wait for a call.  Two weeks went by and no call.  After a long morning of phone hopping I finally got through to them.  It turns out they have no appointments for the rest of the year.  She said she has a huge stack of patients on her desk and they will start calling and setting those up sometime in January, so it would be done in the new year.  I asked if they planned to call and tell us this and she said, no, they don't do that.  I hung up the phone and just cried.  I then called the GI nurse again to reassess.  In my mind I felt like all of this would be handled by the end of the year.  It is obvious this is not the case.  I told her I needed the truth.  I need to know what kind of time frame we are working with to wrap my mind around it all.  My expectations obviously have to change.  I just want to know the plan.  Even if the daily stuff is hard, it's easier to handle when you know the next steps.  The nurse told me we were at the mercy of the endoscope clinic.  Once that procedure is done, Dr. Fortunato should be able to do her surgery within the week. At least now we know where the hold up lies.

The daily part of all of this is not easy.  Subjecting your child to all these laxatives and dealing with the effects of them dictates our every day.  It is so hard to watch her suffer on a regular basis.  Not to mention the expense of $150 every month for laxatives and diapers.  In addition to all the appointments.  And to have to know in the back of my mind that everything I am giving her is damaging and the longer this goes on the more detrimental it is to her organs and the longer we are going to be dealing with and paying for corrective procedures and therapies.  And of course any tests and surgeries done this month would be free, but everything in the new year we pay for because her deductible starts over again- aargh! I feel completely trapped in this process.  And it creates additional health problems...

Dr. Hodges reiterated to us repeatedly, that as long as this situation persists, she will continue to have severe UTIs.  His prediction came true, again, Monday night.  Julia was up all night screaming, unable to pee, and peeing blood. Every time this happens we are faced with the decision of a $250 trip to the ER plus labs and meds or waiting until morning for the $25 trip plus labs and meds.  I hate making medical decisions based on copays, but when you are dealing with a chronic condition it is an unfortunate reality.

We headed in this morning.  Julia could not even pee in a cup because every time she tried she bled. The pain was so severe it left her screaming and shaking.  It is in these moments that I get so angry at cancer.  By definition, cancer invades.  That is so true in every way.  It invades the body, invades your lives, invades your mind, invades your heart- in ways sometimes that you don't even see until it rears its ugly head over and over.  We feel the victory of being through treatment and still NED, but cancer continues to entangle and control our lives in long term side effects.  I hate seeing what it has done to her. The pediatrician determined, obviously, that she had another UTI.  They finally got a sample to send off for culture, but left both her and I soaked in urine.  They started her back on bactrim antibiotics, and gave her some codeine.

This Friday Julia has her follow up with Dr. Fortunato.  I am hopeful that he is going to be understanding and proactive.  If we make a trip in there and pay $25 just to chit-chat, I may have to make a scene.  I am hopeful that the recommendations of her other doctors, the scan evidence of her colon and bladder, the failure of the meds regimen, the repeated UTIs, and the continued pain and suffering will spur some action- preferably in 2010 and not 2011. Our pediatrician has said that if a new plan cannot be made on Friday, they will find a local doctor to do it.

So poor Julia is miserable, in pain, impacted, retaining urine, and an overall a mess.  She something like a whiny attack dog at the moment.  I am sympathetic of her situation, but she is out to destroy the rest of us and trying everyone's limits of patience and grace in this house.

So again we wait, hopefully hinging all our hopes on the next appointment...

And yes, I confess, I am still looking for the ways to be thankful in the situation. This is one of those cases where we are continually getting beat back down.  We are happy to finally have all the needed and skilled doctors on board, we just have to find a way to make all the moving parts work for her now.

To Pee Or Not To Pee (train)

...that is the question.  Or so we thought.  Turns out we were wrong.

Julia had a follow up appointment with Dr. Hodges today, her urologist.  After the events of the weekend with  her peeing blood, passing tissue, visiting the ER, and having another UTI- we were very thankful to already have this appointment set up.  Thankful that God knew in advance that we needed to end up there today. I anticipated we would discuss the recurrent UTIs and techniques for helping her to successfully re-potty train for peeing.  Not so much.

He was much more concerned with her lingering bowel incontinence.  He wanted to do a flat panel x-ray of her abdomen to assess and then we'd talk.  So he sent us across the hall to radiology.  It turns out that despite our regimen of suppositories and miralax, Julia's colon is completely impacted and not functioning at all normally.  I was actually cautiously optimistic because she has had some success in the past week that I was hoping was positive progress.  Unfortunately, the proof is in the film and the huge mass that is her colon in the center of the screen.

Dr. Hodges said it is impossible for her to gain bladder control under these physical conditions.  We cannot even attempt to address that issue until the bowel situation is completely resolved.  And then it will involve physical therapy, biofeedback, and intense retraining regimens.  He said the diffuse thickening of the bladder that was found in her recent ultrasound is a result of the pressure in the area from her colon as well as the bladder muscle's overreaction to attempting to control urine flow.  He said the UTIs are a direct result of this process and will continue until the bowels are repaired.  So she is 100% in diapers with regular encouragement to empty as much and as frequently as possible.

So where are we headed? Dr. Hodges feels Julia definitely needs to have a cecostomy or c-tube.  The GI doc gave us two options back in September: a c-tube or bowel ressection.  His plan was to assess in December and plan a colonoscopy to actually look at the inside of her colon.  If he finds a specific section at fault, then bowel ressection with temporary colostomy would be a fix.  If it just a poor muscle tone, slow healing issue than a c-tube would give a successful, temporary fix until she healed on her own (hopefully) in a few years.  Dr. Hodges wants us to call Dr. Fortunato and get the ball rolling.  It seems the line in the sand has been redrawn.  Waiting will just prolong the healing process which is already a long, slow road. 

So what is a c-tube? Essentially it is like a feeding tube, only lower and it is used to flush, not feed.  It would allow us to flush Julia's colon from "above".  It is placed at the beginning of the large intestine.  We would flush it once a day in a 20min to one hour process which would leave her free from issues and leaking the rest of the time.  If at some point her body healed and began to function on its own again, it can be easily removed. The more I learn about it, the more I feel this is the way to go.  Dr. Hodges feels she is the ideal candidate and this is the best thing we can do for her at this point. He will see her again in February to see if we are any closer to beginning to progress out of diapers.

So I guess that next bridge might not be as far off as we thought.  Looks like we may be crossing it in the every near future. I must say I am excited about the idea of "doing" something.  So much of this process has been waiting and experimenting with little or no success. We are ready to continue in the healing direction.  

And a side trip...

I don't know why this always happens to us.  Every time we travel we end up with someone in the ER.  Not always the same person and never the same problem.  I have yet to figure out any way to prevent it, it just seems to always happen.  I thought we had made it to the end of this trip and my clinic visit would be it, unfortunately that wasn't to be.

Julia has been feeling great and the kids have avoided picking up my germs.  Apparently the cancer road taught us some effective germ prevention skills.  We had gone out for ice cream and Julia had to go to the bathroom.  We are trying to pee potty train her, for the fourth time.  She has done pretty well the past week.  When she tried to pee she started to scream, tears streaming down her face.  Not a good sign.  As soon as she stopped she felt okay again. When we got back to the house we were getting ready for bath and she rushed into use the bathroom.  Immediately she started screaming again.  I felt so helpless.  She was just shaking and crying.  I decided to put her in the warm tub to see if it helped her to pee more comfortably.  She was finally able to go, but it was full of blood and mucous.  Not good news.

With only one kidney,  urinary tract issues are a huge deal.  They buy you a direct trip to the ER, do not pass GO, they will collect $200.  But what else could we do? Fortunately we've got family in health care in this area, so we knew just where to go.

The doctors and nurses were wonderful.  Dr. Lloyd, Karen, Shannon, and the sweet guy nurse who waited on her hand on foot made it as fun as they could.  She is such a trooper through all of it.  being in the ER doesn't phase her much at all.  She makes herself right at home.  She even sent me out to the car to get some things she needed.  She's completely fine with being by herself in there. She was not thrilled about being catheterized, but willingly let them do it.  They decided to make it up to her in treats.  One of the nurses, Debby, just came here from Florida where she worked at Disney.  She was there when Julia had her Make A Wish trip.  She decided to deliver Julia a special get well message from the famous mouse couple :)

Then they dressed her up as Peter Pan.  They even made a hat for her bunny that they fashioned out of folded paper- a little group project.  So sweet! Then they showered her with snacks and candy to pass the time.

The results came back as we expected.  Her urine was positive for blood white blood cells, and nitrates.  They out her on bactrim and sent off the cultures.  Ironically enough she is scheduled to see her urologist on Tuesday to discuss the kidney enlargement, bladder thickening, on potty training issues, and added to the list recurrent UTIs.  They are going to let him decide how to proceed further on Tuesday. Poor JuJu.  She just rolls with all of it and keeps on going, so we do, too.

Its been a medical kind of week around here. My great aunt is in the hospital with blood clots.  My grandfather was taken in for faulty heart stents and is having surgery Monday morning.  My uncle had invasive surgery in Philly on Friday to investigate a suspicious mass and they found aggressive thyroid cancer.  Several children who are dear to us went into the hospital this past week for various conditions. It's just been that kind of week, I guess. So in the grand scheme of things we are thankful.  Thankful for good health, happy times with family, wonderful medical care, and an in and out visit.  Praying for healing roads ahead for all the rest... 

One Year OT Scan Day

Today was Scan Day! One year off treatment.

We talked about it yesterday and Julia asked what was happening at the appointment today.  I went down the list from the top.  With each one she said, "Yay, I like that one." Until we got to the finger prick.  She is really not a fan.  I think it is one of the most dreaded by all these cancer kids.  Give them a port access any day.   It still surprises me that she accepts all of this as a part of life and actually enjoys it.  Her brother was spending the night with her best friends and enjoying a fun playdate while she was NPO and hanging out at the hospital.  But she does it joyfully and with a smile on her face.  She truly enjoys being here.  When I say Camp Brenner is part of our family, it is true.  And for Julia, she does not remember her life before this.

We started in radiology with her ultrasound. I can't help but watch these days.  The techs don't talk about it while they do it.  I'm getting quite a lesson in anatomy.  I can now identify the gall bladder, spleen, liver, common bile duct, kidney, and bladder on the screen.  Now if I could just get one of these machines in my own living room, we could ease a lot of scanxiety around here.  I know GE sells a portable one, how long until the iTouch has an app for that? We could just add it to the nightly routine- bath, pjs, teeth, books, scan your abdomen for tumor growth, prayers, kisses, sweet dreams for all :)  

She finished her ultrasound and they told us to head upstairs.  I asked about her chest x-ray and they said that was scheduled for next week.  What?!?! here we go again. Apparently the new scheduling system still doesn't work.  Back out to wait while they discuss amongst themselves.  Fortunately everyone in radiology was cheery and helpful today (and there was NO ONE else in there) and they decided they could squeeze her in. Good for everybody since we weren't leaving without one. We've had so many by this point we could probably do it ourselves.  Do you think they'll ever add a self-scan aisle like at the grocery store? It would save us all time and money :) 

Then we headed up to the clinic to check in.  Julia couldn't wait to see Ms. Betsey and got right to work on her art project for the day.  They are reorganizing the entire floor and Arts for Life now inhabits the old enclosed waiting area.  It's exciting to see them in their own space.

They called her back for vitals.  She looks good.  She actually lost a few pounds.  Her post chemo binge seems to be over.  Many young kids eat excessively for the number of months they were in treatment.  As if their little bodies are making up for lost time.  Julia was definitely following that pattern, eating around the clock.  Recently, it has tapered off to meals were she actually eats very little.  Much more typical healthy preschooler behavior.  We finished with Nurse Tammy and she wanted to head out to the art table.  One thing was standing in her way... the finger prick.  She sat in the chair, outside the lab, whimpering over and over that she doesn't want to.  I reassured her over and over that she didn't have to like it, but we still had to do it.  She didn't put up a fight, just cried while we did it.  Then after her bandaid, all was well again.

Nurse Karen came to find her to head into a room.  She hopped up on the table and started coloring.  Amazingly, being NPO didn't even phase her today.  She never asked for food or even water all morning.

We had fun catching up with Ms. Diane.  She loves these kids so much and finds a way to have fun with each of them.  She was happy with Julia's progress.  Her labs look great.  All her blood counts are back to normal now and staying there.  We talked about her GI and urology issues.  Yuck.  This part is still a mess.  We are continuing with Dr. Fortunato's plan of daily dulcolax suppositories and miralax.  We have been skipping a dose every week and unfortunately there has been no success.  We are still in status quo mode.  She talked about the future options.  There will likely be a colonoscopy.  If they find a section of the colon has stopped functioning (the general consensus right now) it would need to be ressected.  She touched on that process, the surgeries, the colostomy, etc.  ughh.  The crazy part is, the routine we are in now has started to feel normal.  I try not to think about the next steps.  We'll cross that bridge in six more weeks.
Then we moved on to the urology issues.  We have been attempting re-potty training.. round 3.  It was impossible when she was on heavy dose laxatives, but now that we are controlling the situation, we have an 8-hour window we can practice in during the day.  She has been doing quite well the past week and then two days ago she started screaming it hurts when she pees.  This happens every time, despite our many extra precautions.  Her urine looked okay in the lab report, but they sent off the cultures to be sure.  They did not have any answers, so we're heading back to Dr. Hodges (urology) for his assessment. 

While we waited for the radiology reports to come in, she headed out to chat with the fish.  She has names for all of them and can honestly tell them apart!

The report? NED!!! Julia is ONE-YEAR CANCER-FREE!!! 

Nurse Karen looked it up for us and printed out all the reports.  She did not have any noticeable spots on her lungs.  We praise God for His healing.  Her ultrasound report showed no evidence of tumor growth.  She does have some enlargement of her remaining right kidney suggesting early compensatory hypertrophy.  There is also diffuse thickening of her bladder wall.  All of these issues will be addressed when we see Dr. Hodges.  Right now we are just thankful for no evidence of masses or metastatic disease.  I must say though the "Conclusion" section makes me laugh...  "Absent left kidney compatible with prior radical left nephrectomy."  (translation... There is no left kidney because they surgically removed it.)  I could have told you that without the ultrasound!

Julia really wanted to finish her art projects (instead of getting something to eat!) She made an adorable squirrel.  You can see him standing next to her.  He has a cute purple, tie-dye colored stuffed tail :) She noticed the scrap paper was shaped like a rabbit and she and Betsey turned that into another project.

Then it was time for some lunch and we were on our way.  It was one of our fastest appointments.  The new system in the clinic seems to be working well.  Labs and paperwork were incredibly fast and we were in and out in less than two hours.  Then we headed to pick up Carter.  The dreary, rainy morning gave way to some glorious cool, fall sunshine.  Julia was eager to play with her friends.  

They set up there own pet store outside.  Julia was happy to be the puppy.  She loves to be a dog, play dogs, talk about dogs, read about dogs, draw dogs, play with her stuffed dogs, anything that doesn't involve real ones :)

We are so relieved to breathe again for the next three months.  The kids were excited to say "one-year cancer-free!" Such an incredible gift we have been given, like a free pass for the day.  It does not erase the past and it doesn't guarantee the future, but for today we will hold it up and smile in gratitude, thanking God for his mercy and grace.  The cancer journey is a lifelong marathon of smaller segments.  We have reached another mile marker and we are thrilled to be here.

So we'll head to CiCi's to toast this new gift and celebrate:)

Answers...finally.

I met with my new cardiac electrophysiologist on Thursday, Dr. Klein.  I have had very high hopes for this appointment and was eager to hear a new perspective on the situation.  I gathered all my medical records from the past 30+ years and headed in.  When I walked in the room the nurses said, "Oooh, he's really going to like you, you brought records."  Good sign.

He came in, introduced himself, smiled, and pulled up a chair.  Then he told me to start at the beginning.  And we did.  He poured over every slip in all those files.  We rehashed every scenario, diagnosis, test, ER trip, surgery, medication, and hospitalization.  It was like something out of a medical drama. He was able to flip through and read EKG sheets at lightning speed.  Then we talked about my current symptoms and I started to cry.  It has been such a frustrating experience these past five years and even before.  No one ever seems to fully understand what is happening.  I have been mocked, laughed at, and disregarded by many medical personnel along the way.  I have been harshly accused of drug use by more than one pushy ER doctor. No one had an answer, so they just brushed it off.  I really feel for all those who struggle with chronic pain, chronic fatigue, thyroid imbalances, etc. because this is often the situation for them, too.  Being sick for years is hard.  Being sick for years with no answers is even harder.  Always wondering if you need to go to the doctor and what are they going to say. He promised me we would figure this out and we trudged forward.

His first red flag was that none of my records have documented episodes of ventricular tachycardia- my diagnosis of the past 20 years.  I've heard that mentioned before, but no one ever pursued it further.  Dr. Klein was not giving up.  He wanted to see the reports from my 3-day monitor in August.  The nurse went out to have them faxed over and we waited.  As soon as he read them, the light bulbs starting going off.  All the events on the record where palpitations, PACs, and tachycardia of the sinus nodes, not the ventricles.  And he was able to deduce from looking at the strips of several different leads that all the impulses had the same vector direction.  He started sketching it all out on paper.  The faulty signals are coming from a sinus node at the top of my heart and are creating repetitive circuits within my heart.  This node is defective and extremely sensitive to stimuli.  Instead of SVT, I actually have IST-inappropriate sinus tachycardia.

He suspects this is just one part of the issue.  The other is dysautonomia, a disorder of the sympathetic nervous system.  Essentially what is happening is I have a dysfunctional "fight or flight response".  When it is triggered my body overcompensates and cannot convert itself back to normal.  My dysfunctional sinus node is also overly sensitive to stimulus.  It can be triggered by adrenaline, thyroid hormones, exertion, etc. or for no reason at all while sitting or sleeping.  It is aggravated by caffeine, illness, medications, etc.

It was SO validating to finally feel like someone understood what was going on.  I had to fight the urge to not jump up and hug the man.  He cracked the code! So now what?

The first step is no caffeine, ever, or even decaf.  No more coffee, tea, or soda- just juice, water, and herbal tea.  I must follow a low sugar diet.  And the next really threw me, heavy salt intake.  Yes, you heard right.  He told me I need to eat as much salt as I can stand at every meal.  Salt everything on my plate!  Bizarre.  And I need to drink as much water as possible.  Together these last two help maintain blood pressure and blood volume.  I need regular cardiac exercise to maintain a high fitness level.  And we are working on putting me back on beta blockers.  People with these conditions tend to respond very well to these drugs.  That has been my case for the past 10 years.  He feels it is worth the time and effort to try and make them work again.  So I am slowly going back on a lower dose of Inderal.

We will reevaluate in December. If I am still feeling bad, he is going to put me on a more specialized monitor that will show exactly where the faulty sinus node is located.  Ablation may still be needed in the future.  If the symptoms can not be controlled he would then attempt to eliminate the node through surgery.  I feel completely comfortable with that response.

Then he took some time to ask me about Julia and how she is recovering.  He wants to pray for her and wanted to know when her next set of scans would be (October 14th).  We talked some about cancer and all the people at our church who are battling it right now.  I feel God's hand directly leading me to this wonderful man.  It has taken 20 years, but I am happy to say we finally know what is wrong and we are working on making it better.  There is no greater gift than the gift of HOPE from one to another.  He has given me HOPE on many levels and I am so grateful.

But I have to say I do feel like such a rebel when I salt my lunch every day.  Putting salt on cheese puffs and sliced ham and cheese just feels so wrong :)     

Musical Hospitals

I feel like we're making the rounds these days. 

As many may know I was scheduled to have a heart ablation this past Monday.  I actually ended up canceling that procedure.  When I was scheduled to see the electrophysiologist it was to discuss my 3-day heart monitor results and determine if ablation surgery was appropriate in my case.  When the doctor walked in the room, he had no idea why I was there, had not looked at my case, and had not reviewed the monitor readings.  He did a thorough exam and history and spent about 15 seconds looking at the monitor, he said.  I left with a scheduled surgery date and more than a few concerns.  Two days later I have a message on my answering machine from the cardiology office saying my 3 day monitor results were in and everything looks fine, just continue as normal.  This pretty much solidified my desire to get a second opinion. 

I have had multiple recommendations for another cardiology EP doctor in town- Dr. Klein.  He has stellar credentials, an excellent reputation, AND he's a member of our church.  I am sold.  Now, to get in with him.  I have felt good this month until the past few days.  This morning I was woken from a deep sleep with a racing heart again and knew I needed to do something, so I went to the ER.  This time at a different hospital- out of network from all my docs and records- but a part of this new doctor's network.  They were great and did a full battery of tests, labs, and procedures and could not come up with any acute issues.  But I did get a referral to see the new doctor, so I now have an appointment for October 6th.  Please pray that this is the answer to many decades of questions.  I realize ablation surgery is highly likely, but I just want to know that the decision is being made based on good evidence and knowledge.  I look forward to feeling better again.  I have heard many success stories and would love to feel good again.  It's been many years.    

And tomorrow is Julia's appointment with the GI Motility doctor. Please pray that Dr. Fortunato has wisdom and insight into Julia's issues.  We are very hopeful about getting a plan for her tomorrow.  I know the fix will likely not be quick, but at this point we just want some insight and a plan.  Julia is actually looking forward to the appointment, too.  I think she is tired of all of this, too.

Thank you all for your continued love, support, and prayers for all of us.  It makes all the difference. 

Do You Know?

Do you know what today is? Probably not, but we plan to change that one person at a time.  Today is National Childhood Cancer Day.  One day set aside during Childhood Cancer Awareness Month for our country to remember the kids who fall victim to this beast.  Sadly, most people don't know, but we have faith that day will come.

Unfortunately, cancer is something we can never forget. It is a part of all of us and a war we have been called to fight.  And last night we were reminded that the battle wounds still remain.  We have not had much success with Julia's laxative medications in past weeks.  It is a daily frustration.  I feel something like a mad scientist just guessing and experimenting to find something that works.  We have no idea what is really going on inside her and we know these medications are likely creating long term damage, but we press on just trying to get to her appt on September 23rd.  Toward the end of last week, Julia was struggling more each day.  The pain was increasing, the days of no success continued to add up, she was becoming more lethargic, and had pretty much stopped eating.  We knew something had to be done and of course it was the weekend.  Doesn't this always happen? We let it go until Sunday afternoon when she wouldn't get out of bed, was complaining of bad stomach pain, and was now running a fever of 102.  I called the after hours service for the GI docs hoping to get some guidance.  Unfortunately I didn't get far.  The nurse said she had to go the ER and to prepare to be admitted.

This is life after cancer, surgery, chemo, and radiation.  "Sick" is not just sick anymore.  Dr. McMullen drove that point home with us earlier this month.  We can never just assume she has a stomach bug.  Every time she vomits, she has to get an abdominal x-ray to rule out bowel obstruction.  Not optional.  Well apparently these symptoms point to the same, so off to the ER we went.  We have reached the point where we don't have the bags packed in the closet all the time, but I can still pack for an admission in 15min.  I guess that skill sticks with you.  Julia was not thrilled, but cooperative and obviously miserable.        

They took her right back and got started.  They did all the preliminary labs and we actually found our answer in the process.  It turns out she has a bacterial UTI in addition to the bowel impaction.  We were relieved it was not an obstruction though concerned that she has another UTI.  Not sure what the urologist will do at this point.  We go back to him in October.  The ER doctor was great and listened to her history and recent struggles.  It was good to have another person's brain to pick and get ideas from.  He also got Dr. Fortunato on the phone (the GI motility doc we haven't seen) and we were able to get him to advise us.  He has told us to do whatever we have to with as many and as much of the over the counter products as needed.  It was a relief to get permission to do this.  Her ER doc said he has seen kids use them for months and thinks it is definitely our only choice at this point.

So five hours later we were out the door at 10:30pm to find a 24 hour pharmacy and dinner.  Then home to take all the new meds.  I am happy to report the combination we were given worked, finally.  We were happy to crawl into our own beds at midnight.  This is not how I thought the night would go, but we are so thankful for good docs and nurses who went out of there way to help Julia.  She wasn't too phased by the whole process.  Brenners' is still a second home to her.  She crawled right into the bed and flipped on Noggin.  They actually had MusicFest2010 on last night which was great.   

So today we have spent the day at home resting.  I am happy to say Carter entertained himself so I could sleep until 9:30.  Julia didn't crawl out of bed until 10:30.  She is doing a little better.  Still quite ornery, feverish, and emotionally fragile but better than she was before.

So today we remember all those fighting in the trenches of cancer, all those angels who have earned their wings, and all those survivors who carry their scars and move forward each day with hope for the future.  We were wearing our shirts...

This picture was drawn by another Wilms' Warrior- Mackenzie, age 6.  Here is her story...

 Madyson and Mackenzie were born that morning. Madyson arrived at 3:24am and shortly after at 3:53am Mackenzie was born. Twins. Born into the state foster care system. They were the 15th and 16th babies this birth mom had delivered. All of the surviving children were adopted years before.
The phone call continued. “ The bigger one is being discharged tomorrow and the little one will have to stay for awhile. If you would like, you could take just one” Seriously?? How could twins be split up? Who could do that? The state foster system could do that because there are never enough foster parents and placing one child is easier than placing two. They said they would give me 40 minutes or so to call them back because they really needed to secure a placement for the baby being discharged. Our lives were changed forever. Within 7 weeks, adoption papers were signed and they were baptized at Guardian Angels on June 24, 2001.

Mackenzie was diagnosed with a Wilms Tumor on 4/5/06 a few weeks before her 5th birthday. Her tumor pathology was Stage 2- favorable histology. She had her left kidney removed and completed 18 weeks of chemotherapy without any complications. During her off treatment scans we found out that a new tumor was growing in the left kidney bed. We also found out that our hospital had not sent her tumor to the Central Review lab and she had been initially misdiagnosed. Her tumor was actually Stage 3- Anaplasia. She should have received more aggressive chemo along with radiation. 

Mackenzie finished the correct protocol in February 2007 but we were told that not treating her properly upon diagnosis could affect her chances of a cure. It was recommended that we switch to a children's hospital, so we did. In August 2007, Mackenzie's 6 month off treatment scans were clear or so we were told. Within 3 weeks, she had an inoperable tumor in her abdomen. Upon reviewing the August scan it was clear that a 5 x 5 cm tumor was missed by the radiologist. Another hospital and another mistake. This mistake would be the begining of trying to shrink a very large mass. Mackenzie endured months of high dose chemo only to eventually find out that the surgeon could not remove the tumor. It eventually started to grow again and our beautiful daughter took her place in eternal bliss. Our hearts will always ache and our lives will never be the same without Mackenzie.

I think back on that day often and how one phone call and one decision changed the course of our lives. Was it just meant to be? Was this God’s perfect plan that I routinely question now. How does a perfect plan involve so much sadness and loss? I suppose one day I will have all of those answers that I need until then I have no choice but to trust that He knows what is best. So how could twins be split up?? Cancer splits up twins.

Mackenzie drew the picture on our shirts just days before she earned her angel wings.  

So today we carry the torch forward for Mackenzie and all the other Wilms' Warriors who have fought with all they have.  It is because of so many children and their families that we have the protocols we use today.  Cancer research is not perfected in the lab, it is done on children.  The thousands who have gone before are our heroes to those of us faced with this disease.  They deserve purple hearts for their brave sacrifice.  The least we can do is continue the fight, pray and support their families, and share their stories.  

The battle is on.