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! 

Scanxiety

My body and soul have not taken a deep breath in weeks.  I have been avoiding the thought of October 6th with everything in me. I am working hard to push back the fears.  I am hearing conversations in my head I never want to hear said out loud. 

It is "scanxiety".  The term used by cancer parents to describe the universal experience we face every time doctors peer into the bodies of our cancer warriors.  It does not matter if they finished treatment yesterday or five years ago, the feelings are the same.  What does it look like?

• we find ourselves awkwardly impatient and short with each other, especially the kids- 'parental guilt' takes on a whole new meaning
• we pick fights about non-issues to release some of the pressure
• we take the time to really reflect at how far we've come and how gracious our God has been
• we cry when we least expect it
• we thank God for the gift of these past few months of NED days and the simple joys we were given as a family
• we prepare ourselves mentally to face the day... whatever may come
• we crave praise music and time in God's Word with the same intensity we crave oxygen
• we wrestle daily with the demons... the what-ifs, the fears, the fate of those who've gone before us
• we ponder the numbers... the chance of relapse, the duration from the end of treatment to relapse, the possibilities of other complications, the options
• we can't help but be hyper-sensitive to physical symptoms and what they might indicate.  Never again will there be 'just a fever', 'just a pain', or 'just an illness'
• we weigh the side effects of every past and future treatment, drug, scan, or test.  With cancer you go to the end limits of 'normal exposure' and then jump off the cliff.  Now we just try to juggle it all and pray that in 'scanning safer' we aren't missing anything.
• sometimes we just sit in the silence and be because we don't want to say aloud what we both know the other is thinking
• we remember all those who have relapsed and the tremendous battles they have faced or for some the helpless words "there is nothing more we can do" and we continue to work for more research
• we linger a little longer, hug a little tighter, read one more story, and take one more glance
• we feel the burdens of those still in the trenches fighting for their lives with an even greater intensity
• we remember our friends in the battle whose lives have been cut way too short
• we find ourselves daily having to lay it all down again and accepting God's grace for today alone.

Tomorrow is Scan Day..

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.  

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:)

Animal House

It started with a simple question...

Billy asked, "Why is the beta fish's bowl only half full of water?"

I started to explain....  "I started putting in less water because ever since he got sick while we were out of town and lost all his fins, he has trouble swimming.  It was too much work for him to get all the way to the top to eat, so I lowered the water.  I want to be sure he eats, so he can grow new fins."

I'm crazy.  Go ahead and laugh it's okay.  It's a disorder, I know.

Why am I stressing over this fish?! The same fish that live in plastic cups in gas stations can't cut in a glass bowl in our kitchen?! Go figure.  But we haven't given up on him.  Though I wonder at times if he's suffering.  I just don't have the heart to flush him and kill him myself. Again, I know I'm crazy.

Pet problems aren't new to us.  Chloe is our sweet white long-haired cat.  I received her as a gift 13 years ago from the children I was nannying for at the time.  She is so gentle and loving.  She loves kids and being with people.  About 8 yrs ago she started having medical issues.  After many trips to the vet for tests, an $800 surgery determined she has IBD.  She is fine most of the time (as long as she eats her prescription $5 a pound hypoallergenic cat food!).  Unless she gets stressed.  Unfortunately her source of security is having me around daily.  When I am gone she panics, which induces bowel distress.  You can imagine what that looks like in your house.  Not pretty.  She's been doing fairly well, but Julia's cancer treatments over the past year and 67 trips to the hospital did not please her very much.  Every episode she would have would then require two weeks of tapered dosing steroid pills.

Then there's the aquarium- 2 snails, a catfish, and two small tropical fish.  It seems so simple, right?  But we discovered female catfish lay eggs on a regular basis all over the sides of the tank.  And it turns out the snails are male and female and have taken to mating regularly which means clusters of snail eggs adhered all over the tank.

Do these things happen to other people or only in our nutty house?! Seriously, it makes me feel crazy sometimes. 

So for now I will continue to make accommodations for my disabled fish, clean up after everyone, and try not to upset the cat.

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. 

St.Baldrick's Saturday

The big day arrived on Saturday- the annual St. Baldrick's Shaving Day! Unfortunately, it ended up raining hard most of the afternoon, but that did not change the motivation of any of those in attendance.  We were all there for some very important (little) reasons and the rain was not slowing us down.

Carter and Julia were very excited to be going.  They look forward to seeing friends from the clinic and watching the shaving.  Carter really has a heart for fundraising, too.  His entrepreneurial qualities combined with his heart for Brenners' gets him fired up.  I definitely see a sidekick in my future in the pediatric cancer awareness and fundraising arena.

Here's Team Julia's group shot BEFORE....

(JuJu, Daddy, Uncle Anthony, cousin Kyle, and Brian)

Time for the team to take the stage.  The stylists were all so sweet to the shavees and honored kids.  They volunteer their services to come out for the event (you must have licensed hair dressers) and really get into why they are there.

Julia had the job of shaving Daddy.... 

J

Admiring her work...

I would love to know what she was thinking...

Kyle's face was priceless! Such a brave kid.  At 7 years old he made the decision himself to shave for Julia and try and raise as much money as he could. He was a little nervous at first, but smiling by the end...

Team Julia AFTER.  Bald is beautiful :)

Vinny had a ball up on stage shaving heads :) He was really into it, the whole process- shaving, brushing, powdering.  We were so happy he was able to be there.  He has had a really tough week of chemo on top of his dog dying this week.  He is by far one of the toughest kids I know! And to think, just a few months ago he was on hospice.  Take that cancer!  It was such a pleasure to see this little miracle boy getting such joy from shaving heads. 

Vinny with his mom Sarah.  She's the mother hen of our floor and a treasure to all of us.  The "room mother" of Camp Brenner.  We love you Sarah!!

Then it was Dr. McLean's turn.  Each of the Brenners' kids had a chance to take a swipe at his head.

We love you Dr. McLean!

One of the newbies to the honored kids teams was sweet little Lilly.  She has a particularly tough case of ALL and has had many challenges on her treatment journey so far.  Lilly's mom has an important meeting Monday to make decisions for the future of her treatment.  please take a moment to lift them up in prayer.  It is one of the hardest parts of this process.  The doctors do all they can to advise and give information, but in the end it is the parents who must make the call and sign on the line.  It never gets easier.

Seeing her sweet face and tiny body reminded me so much of Julia during chemo.  It is such a testament to how much God has healed her in past months.  We are so thankful she has come so far and pray for the same future for sweet Lilly.

We are so proud of Kyle for his courage to do this to honor Julia and help other kids with cancer.  He is wise beyond his 7 years and we pray God uses his example as a testimony to others.  At shaving time he had already raised over $800 plus matching funds.  You rock Kyle!

Julia rubbing Daddy's head...

It was an emotional day, as always.It always hits me on so many levels.  Seeing the bald heads, hearing the children's stories shared, seeing other families from the floor, realizing how far Julia's come, remembering what she's been through, meeting all the new honored kids, seeing strangers step up on the spot to shave their heads for the kids, watching the donations come in, reading the wall of posters and remembering all those we've lost on the floor- many just this year.

It has been a hard week.  Last Sunday Camp Brenner lost Devan and Kate within five minutes of each other.  Two more of our courageous warriors have earned their wings.  Attending Kate's funeral this week was very difficult.  Saying goodbye to sweet Kate only 5 years old, watching her siblings hug her casket, seeing the pain in the eyes of all the friends and family who loved her, seeing all the other Camp Brenner families and staff, and experiencing first hand what this horrible disease is doing to our children.  It is devastating and sadly it is not getting easier or going away.  Kate's mother, Susan delivered her eulogy.  Her strength and eloquence were a true blessing from God.  She so bravely shared Kate's life with everyone.  Kate loved Jesus with all her heart and her mother was blessed to share that with everyone.  When she began to talk about the rest of the family, and how tough these two years have been with her and Kate in the hospital, my heart just ached for all of them.  It is not just the patients who are victims it is the entire family.  Please pray for Kate's family as they journey through grief and struggle to find their new life together.

Every loss on the floor is deeply felt by all the families.  These are our friends.  Our children journey this road together playing at the hospital through countless appointments and hospitalizations.  These are the families we walk beside sharing struggles, pain, joy, grief, stress, and a deep understanding that can only be felt by another cancer parent.  It is a part of each of our worlds now and the burden is heavy and complicated.  We get angry at cancer.  We worry about our own children and all the ones we love.  We ache and plead for safer treatments and more options for our kids.  We wonder who will relapse next.  We carry survivor's guilt when we see the pain of others.  We face our children who have had to give up their innocence and face disease, suffering, and death at much too young an age.  Having to lose your friends to the same disease you are fighting strips our children of so many basic securities.  Please pray for all of the cancer families fighting this war.

I've been thinking a lot lately about this pain we carry.  Once you have journeyed through childhood cancer you are never the same on many levels.  I have prayed many times in past years for God to give me His eyes to see the people around me and His eyes to see their burdens and pain.  I also ask that the things that break His heart break mine too.  I don't want to be calloused or ignorant or jaded or selfish or worldly.  But the reality of this brings tremendous sadness and lots of tears.  I trust completely in God's ultimate plan, but I am deeply troubled by so many things we witness here on this earth.  I know we will not understand it all on this side, but I pray for His healing touch on the many broken hearts out there tonight.  Some of them only a handful of years old.  I heard this song, through my tears for Kate's family recently, and the words really spoke to me.... 

 God loves a lullaby
In a mothers tears in the dead of night
Better than a Hallelujah sometimes. 

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah. 

Better than a Hallelujah sometimes. 

(Amy Grant)

So a day like St.Baldrick's is one of those tangible strides we can make in this fight against pediatric cancer.  It is something we CAN do.  There is no greater need in this war than funding for research.  We will continue to do everything we can for CureSearch, St.Baldrick's, and Alex's Lemonade Stand.  Every dollar counts and every step is one step closer and one more child's life touched.  It is not too late to donate.  If you feel led to support Team Julia, donations can still be made.  We're excited to see the totals from the event.  We know they well surpassed their $35,000 goal.  Not a bad day for some piles of hair on the floor :)

We shave to honor all the courageous cancer kids.  We will continue to carry the torch for all the survivors, fighters, and angels.  May God bless you all!

Broken Heart

I was scheduled to return to the cardiologist this afternoon to get the  results of my 3-day monitor.  I was meeting with the electrophysiologist this time- the electrican of the cardiology department.  We had just finished eating breakfast when the office called to say he had an emergency and needed to fly out this afternoon.  Could I please come right now? Sure... by now, how soon do you mean? By the time I showered dressed the kids, secured earlier babysitting, and got everyone out, "now" was more like an hour.

The nurse came in and did another EKG, not sure why, how many of these does one person need in a month? When the doctor came in he clearly was not familiar with my case.  Frustrating.  He took a quick history and asked when I was scheduled to wear a monitor.  That's why I'm here.  To hear your interpretation of those results! So, he proceeded to review it right there.  This is going to take longer than I thought.  He did seem to have a good grasp of the situation.  For those of you not familiar here is the short history...

I started having episodes of rapid heartrate when I was 16.  A week at Bethesda ruled out a variety of conditions and I was diagnosed with SVT (supraventricular tachycardia).  I did not require treatment until I was 25 and started having dozens of episodes a day.  I was put on beta blockers and things have been going along great for the past decade.  I was diagnosed with Graves disease 2 years ago and had my thyroid removed.  They just regulated my thyroid med levels this past winter and in the spring I started feeling really sick.  It was determined my beta blockers were now toxic to my body.  No one knows why this happened and I was weaned off them.  I felt better for a few seeks, then the SVT started back.  So now, it's time to talk ablation surgery to try and cure this condition for good.  To make that decision, I was put on a heart monitor to attempt to capture the cardiac events. 

When he looked over the heart monitor readings, he said it confirmed the ventricular tachycardia and was definitely a candidate for ablation surgery.  It is done as a catheter procedure.  They thread their instruments through both the groin arteries and neck if necessary.  The heart is then mapped, from an electrical perspective.  The offending nodes are then ablated by laser.  He asked if I wanted to watch a video of the procedure.  Umm... no.  I don't want to remember a bit of it, if you don't mind.

He left and his nurse scheduler came in with her calendar.  She opened it and said, "So, what do your next few weeks look like?"  I started to cry.  They don't know anything about Julia's situation.  I told her about her upcoming tests, appointments, and open-ended questions.  And she started to cry.  So, we went ahead and put a surgery date on the books for September 20th-op on the 14th.  They are waiting to hear back from me after all of Julia's upcoming appointments. I am also considering switching to a different doctor who I have heard many positive things about.  Please pray that we make the right decision about doctors, hospitals, and timing.

The GI Motility department at Brenners' called me back on Monday.  They have Julia scheduled for Monday, August 30th.  The nurse talked to me for a long time about the procedure and Julia's history.  GI had called in a versed prescription for us to give her before the test.  In talking with them yesterday, we determined she likely will not need it.  In the grand scheme of all she has been through, this should not be terribly uncomfortable or upsetting to her.  We are hoping to keep her conscious so they are able to get her feedback on sensations if she chooses to cooperate.

When we got back to the house today after my appointment their was a message from Dr. McMullen's office.  He is Julia's radiation oncologist (Dr. Hot Dog).  Nurse Diane had emailed him last week to get his input about Julia's bowel situation.  He wants to see us asap.  He is probably going to be upset that we did not call him sooner, but I am happy that he is on board at this point.  I have nothing but the utmost respect for his approach, knowledge, and discernment.  He was a strong guiding force in Julia's initial diagnosis and treatment plan.  They had an opening on Thursday, September 2nd.  That is the day of her next chest x-ray, so they told us to come down after that and Dr. McMullen will actually interpret the results for us.  I am eager to hear his input and be able to pick his brain in this situation.  I have complete trust in his skills.  One of our fears is that the outcome will still be vague after the x-ray and we will be forced to make the decision for a CT scan or not.  I would much rather Dr. McMullen make that decision, or at least weigh in heavily.  

After the appointments were all set up, I checked my email and received the devastating news.  Kate, from our Brenner's family has relapsed and is being sent home on hospice.

Two years ago, at the age of 3, Kate was diagnosed with leukemia (ALL).  Treatment was tough on Kate and she suffered many debilitating side effects and infections.  She made it through to maintenance and sadly, last February, was diagnosed with a relapse.  She would need a bone marrow transplant to survive, but she needed to be rid of the cancer cells first.  Her family was offered hospice, but they found out about an experimental drug in Italy- Kate's Italian Kryptonite.  Kate's devoted prayer warriors, her medical team, her wonder drug, and her amazing God got her to transplant at Duke.  On May 18th she received bone marrow from her brother Jarod.  Kate has had a very rough summer, but was one week away from reaching her 100 day mark when the relapse was found.

There is nothing more medicine can offer Kate.  She has been sent home on hospice to be with her family as her condition deteriorates.  Kate is one of 5 children.  This family has faced unimaginable challenges.  Mom, Susan, was pregnant with baby Bella when Kate was diagnosed.  Baby Bella lived on the oncology floor for the first few months of life and for the past year has had to be away from her mother.  The family has been completely torn in two for the past 2 years.  They live in a 1200 square floor house that barely fits their family of seven.  They were one of the final two families considered last year for ABCs Extreme Makeover Home Edition, but the house went to another deserving family.  At the tender age of 5, Kate has already reached her $1 million dollar cap for health insurance and the bills are piling up.  The family is now unable to buy a new home.  Sweet Kate does not even have a bedroom or bed of her own to come home to.  A foundation has been set up to secure a home for this family.  If you feel lead, please help in any way you can.  And please lift up Joe, Susan, Jarod, Parker, Julia Faith, Bella, and princess Kate in prayer.  We believe in God's miracles! We ask that He carry each one of them through each and every moment of the coming days.
   
So my heart is broken, both literally and figuratively.

Thank you for the love, prayers, and support for us and all those we hold dear.

A New GI Plan

We have made a step in the right direction with Julia (I hope!!).  Its been a rough week, very little success with her meds, and hours of time put in trying to make something work.  We were really getting frustrated with all of it.  She did not go to the bathroom for several days in a row and every day we knew things were getting worse.  The frustrating part about having these issues is that every day we are not successful makes the situation worse and the cumulative effect is dangerous.  It's not something we can ignore, yet so often we feel completely powerless. 

I started calling her doctors mid week to see if there was something else we could do.  It takes a while to get anywhere. A series of leaving messages, nurses calling back to take notes, then waiting for the doctors verdict.  During this time you pretty much have to live married to your phone because missing the call means back to voicemail phone tag.  And you know the phone always rings as you run to the bathroom, unload the car, or run upstairs to get something.

Thursday night I received a call from Diane, the chemo nurse practitioner from pediatric oncology.  (She plays the role of the doctor during the weekly chemo treatments in the clinic and knows us and our situation well.)  She was very concerned with what is happening with Julia.  She agrees this is a quality of life issue and serious problem.  We are obviously not addressing the real problem yet.  She listened for a long time and really wanted to figure out the best plan.  At this point she is sending emails to 2 GI doctors, a long-term survivor oncology doctor, and Dr. McMullen- Julia's radiation oncologist.  I am very interested to see what Dr. McMullen has to say.  If anyone has seen, heard, or read about bowel damage from radiation it would be him.

Then next day GI did call back.  They are sending Julia to the gastrointestinal motility doctors.  We are awaiting their phone call early next week.  They will begin with manometry tests.  These will check the pressures and muscle strength of her lower GI tract.  I am not sure what other tests they are considering, but here is a link to the commonly used ones if you are interested.  They have called in prescription sedatives for us to give her, but at this point we are still awaiting a date for when all this will happen.  We pray that these tests lead us to the real issue and help the doctors to come up with a plan for treating her.  We realize this still may require years of healing, but we need a plan for the short term while we are waiting.

In the meantime GI has given us the go ahead to use the Dulcolax suppositories until the new team takes over.  So we can at least relax a little that we are doing something.  Though at this point they are not working as well as they did previously which concerns mean that she is getting impacted again.  Poor Julia.  I still hate that she is having to deal with this.  The older she gets the more self conscious all of it makes her.  She has had more and more comments from other kids lately.  Not malicious, just curious and it is beginning to upset her.  We are anxiously anticipating finally getting an answer, but cautious and hesitant, that we have to be prepared for whatever they find.  As much as we want this to be fixable and quick, we know that is not guaranteed or likely.

She has been handling it all like a trooper.  This past week she has taken to living in a leopard print dance costume.  She found it in the playroom and started requesting to wear it over her pajamas.  I obliged and soon she was wearing it during the day, too.  It wouldn't be my first choice, but hey if she likes it I can live with it.  Your only four once.  I do wonder how she can stand the velour fabric when it's 100 degrees everyday, but she hasn't complained.  So if you see a curly blonde leopard around town, that's JuJu...

Matters of the Heart

It has been an interesting week around here.  I called GI when we got back to come up with a new plan for Julia.  The nurse was very understanding and agreed we needed to find something better than the oral laxatives, but knew the dulcolax was not going to be a long term option.  She talked with the doctor and it was decided to put her on daily saline enemas.  The dulcolax is effective and convenient but long term use of the stimulant drug will damage the muscles in her GI tract.  So the safe alternative in her case is daily saline enemas.  We have been given our instructions and are gathering all the needed supplies.  We cannot use the OTC Fleet version because the phosphate will mess up her electrolyte balance.  I am dreading having to do this to her.  Unfortunately we have no choice.  This is not something that can be ignored.  It has to be addressed daily.

After a lot of prayer, discussion, and emails with fellow Wilms' parents; we decided to get a chest x-ray for Julia in September.  I called the oncology clinic to leave a message for Dr. McLean with our request.  When I told Ann our concerns, she scheduled it on the spot.  It means so much to me that they trust parents' instincts and honor our requests without a second thought.  So now Julia will have a chest x-ray on September 2nd.  We are praying that the 3 spots on her lungs have healed and disappeared, but if there is something we need to see, we pray that God makes that very clear.

Tuesday, I returned to the cardiologist to receive my Holter monitor.  I was hooked up and strapped in. 

 They failed to mention to me in advance that you cannot shower or remove your bra while wearing one of these.  Would have been nice to know in advance.  Thank goodness I took a shower at the last minute! It is going to be a long few days, especially with the 100+ temps.  I had to document all my activity and any symptoms I felt during the 3 days.  I find it all strangely ironic that I am wearing this contraption that is looking into my heart. 

 Can it really see what's in there?

• Does it know what it feels like to fear your child's cancer may relapse?
• Does it know what the scars of cancer treatment look like on a mother's heart?
• Does it know how it feels to give your daughter an enema just to function every day?
• Does it know my heart is swinging through fire and clinging tightly to faith?
• Does it know the pain of seeing other children relapse and die from this beast called cancer?
• Does it see and feel all the unknowns the same way I do?
• Does it know how much heart surgery was not in my plans this fall?

I guess we'll have to wait and see.  I get the results from the monitor recordings in two weeks when I visit the cardiac electrophysiologist.  I have been doing some research into possible surgeons in the event I do have to proceed with the ablation.  One of the toughest things lately has been the time devoted to medical research.  It is hard enough to have to deal with the medical situations we've faced, but as a cancer parent and cardiac patient, I also have to be an advocate for both of us which involves research.  It has been both consuming and empowering.  I feel like I have some good leads in both areas and have made some good progress this week. 

When the week began I was still struggling with the emotional weight of it all.  I have felt the burden ease a little day by day.  I attribute much of that to my precious friends.  I am blessed to have the kind of friends that call even when they know there is nothing they can say, that cry along with me when we need to, that aren't afraid of what may come, that send letters and emails at the leading of the Spirit, that drop in to do daily life because they just sense the need, and that never cease to pray for our family.  I have the friends that hold up my arms when I can't gather the strength and I am blessed beyond belief.