Harder Than Expected

This week has already gone much harder than expected.  The vomiting began last night before bed and she was still dry heaving when we arrived for more of this toxic wonder drug today.  When we arrived the protein levels in her urine were too high to begin chemo so we had to wait hours to begin before they dropped.  Chemo can cause cystic hemorrhaging in your kidneys, so they monitor the levels very closely.

We met with our Stem Cell Coordinator this morning who went over the daily shots we will begin giving her at home at the the end of this week.  They’ll help her counts rise to their peak level in time for her harvest admit on the 13th.  She also began to go into detail about the Stem Cell Transplant itself, which will probably be the most difficult piece of this treatment.  It’s when will stay here at least a month waiting for her body to recover.

In about an hour they’ll place the feeding tube in her nose, down her throat and into her stomach.  I guess I had assumed they would sedate kids for something like that, but unfortunately it’s not the case.  They simply restrain them.  It’s held in place by a single piece of tape on the side of her face.  All morning I’ve been versed in the appropriate steps to follow if and when she rips it out at home.

Later today we’ll start giving her meds through the tube and tomorrow we’ll begin the feeds.  Her feeds will run through a pump overnight for 12 hours.  As with a newborn we’ll get up every four hours to change the bag.  With each additional round of chemo we’ll decrease the amount of formula she’s receiving.  There’s no point giving it to her only for her to throw it back up.

It’s hard to believe that only eight days ago she had hair.  Only eight days ago, and today I’ll leave with someone practically unrecognizable.  Bald with a tube hanging out of her nose taped across the side of her face.  Tape that has been eating away her skin.  When they changed  her central line dressing yesterday the entire site was completely red and at the outskirts of where it had been was raw, bloody skin. Your gut tells you just to leave the dressing off a while so it can breath, but you can’t let the site stay open for more than a couple minutes. Even then everyone in the room has to where a mask to prevent infection.  They covered it back up immediately, but this time with something hypo-allergenic.  Hopefully that will help.

I won’t pretend that every day I feel strong and hopeful.  The past 24 hours have been some of the hardest yet and they continue to paint a picture for me that gets more and more grim.  I anticipate the week getting harder with a tube down her throat.  I’m told it takes days for kids to get used to that sensation.

This is usually the part of my blog where I throw in something adorable she said, something encouraging I’ve read, or a promise from the Lord I know I can fall back on.  But I don’t have any of that in me today.

Kindergarten Harvest

Izzy and I left last night for her second round of chemo, leaving the boys at home for the week.  Carter sat on our living room floor surrounded by Legos unmoved by our departure, but Kendrick and I felt the enormous tear in our family as I walked out the door.  I wondered how doing life in two separate states would effect all of us a year from now.  It was miles before the pain of leaving my home and the rest of my family behind finally wore off.  It was further still before I felt prepared for the week ahead.  I set my mind on a week from now when we would be home again for two weeks.

Before the chemo even started this morning, that plan fell apart.  I knew our next step in the plan was a Stem Cell Harvest.  What I did not know was that it was scheduled for August 13th, a non-negotiable date based on when her counts should be at their peak.  After the surgical placement of a specific type of line we would be in the hospital for several days waiting for the collection.  It could take anywhere from one to five days and then a 24 hour recovery after that temporary line was removed.  Carter’s first day of kindergarten was the 15th.

Every parent wants to be there for their child’s first day of kindergarten to witness that milestone first hand. And they want to be there waiting in the parking lot after school or standing in the driveway when the bus pulls up.  Somehow I feel like I need it more than any parent has ever needed it in the history of the world.   Carter and I have come such a long way together. He has always had the most precious place in my heart. When he was born in June of 2006 we nearly lost him.  My placenta abrupted during labor and he went without oxygen for some time.  He was resuscitated and spent a few days in the NICU.  Like usual, everyone said he would be fine and of course, he wasn’t.

It started off with mild developmental delays and then a feeding aversion.  By the time he reached one year he wasn’t rolling over and his diet consisted of only applesauce and oatmeal.  Six months later he still wasn’t crawling but was scooting, placing no weight on the right side.  Sitting Indian style he would pull himself with his left arm and leg and drag the other side of his body.  An MRI revealed his brain was lacking white matter.  This was causing his nervous system to misinterpret information.  It was something called Sensory Processing Disorder.  They couldn’t tell us why his right side was weaker but suggested more therapy and braces to the lower portion of his legs.

Carter has been in and out of therapy for the past six years.  He continues to go two steps forward and half a step back.  He is functionally leaps and bounds further than he was a year or two ago but he is very anxious and still struggles with sensory issues.  On June 1st he had a spinal surgery to help with his gross motor delay and functional bowel problems.

I will never understand why it had to be this way.  Why both of my children had to have medical issues, so I won’t try.  It is what it is.  But I do know that part of my calling is to be an advocate.  Part of what I do professionally is work to give a voice to the voiceless, or better yet, be sure their own voice is heard.  One of the things I’ve learned since Izzy was first diagnosed was that I have had that same calling in my own home.  I remember laying on my bed the night we first got the news about Izzy.  I remember asking the Lord why in the world He would allow us to have this on top of everything we have been through with Carter.  And in that instant He changed what I was looking at.  What I was getting ready to go through was not something to deal with “on top of” the stuff we had gone through with Carter.  Instead I began to see that everything we had gone through with Carter had prepared us for this moment in time.

All I want right now is for my children to have life to the fullest.  I’m not accepting the circumstances the enemy has thrown our way.  No matter how tired, how discouraged, how afraid I am, I will never stop asking for God to heal them.  I will never accept that this is all there is.

John 10:10

10 The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

That’s what I will continue to ask for.   And I”ll be there for the first day of kindergarten too.

Branches

Writing has always been therapeutic for me, but somehow during this season of life I find myself at a loss for words. So often I try to write and find there’s no way to articulate all the emotion that I feel. I never knew it was possible to feel such a vast array of emotions all at the same time. Over the course of any given day I feel sadness, I feel anger, and I feel fear. But I also feel joy, I feel peace, and I feel thankful. Somehow even though the world around me, my world, is spinning violently out control I am able to have moments of joy and peace and thanksgiving. And that is nothing short of the grace of God.

I’m learning that there is a blessing that comes from stopping to be thankful. That blessing is joy and peace. When I stop in the midst of this horror long enough to be thankful for her life, to be thankful that she exists, the Lord is faithful to bring me joy. When I stop worrying about what the next 15 months of this journey will bring, how sick she’ll get and if the cancer will ever really be gone, long enough to be thankful that she didn’t feel sick TODAY, He’s faithful to provide peace.

We woke up this morning to a fallen tree on our roof. It had snapped close to the base and fallen over the top of the kids play set and the top of it was laying on the roof. A closer look revealed that it hadn’t snapped completely from the base of the tree and every few minutes we could hear “naps” and “pops” as it broke off a little more. An even closer look revealed that the only reason it hadn’t fallen more, quite possibly breaking through our dining room window and definitely taking out the play set, was because it had been caught by a small branch from another tree that was still holding it up. That tiny branch was, infact, what was keeping the entire tree from breaking.

Seeing the branch helped me put my day into perspective. I was angry the tree had fallen in the first place. It hadn’t stormed at all last night and there seemed to be no logical prompting to it. Secondly, Kendrick had to take another unpaid day off work to deal with it. Plus, we were out the expense of our insurance deductible. Seriously? There wasn’t even any wind last night. No wind.

But then I realized, if I took my focus off the tree and instead placed it on the branch, everything changed. I was so thankful for that branch. I know that insurance would have covered the damage, but how much would our lives be inconvenienced by the repairs. What if we had lost our comfy weekend at home before we depart for another week of chemo because of all the repairs required. And who’s to say it would have been a straight shot anyway, what if it had veered left and went into Carter’s room. I was suddenly so thankful for the branch, I didn’t care about the tree.

And that’s the way I’m trying to do life with cancer too. If all I do is concentrate on it, it will take me down as it spins my life violently out of control. So I’m thankful for what we have in the midst of it. Izzy’s hair started falling out this week. She’s in a wedding this weekend and she wanted to still have her hair for it. She doesn’t and the other girls will. But I celebrate that when I handed her a pair of scissors and let her take control of the situation she never looked back. I told her “If anyone’s going to take away your hair it will be you. We won’t give that to cancer”. And the whole time she did it she laughed saying she was “making her own hair fall out”.

She has to take an antibiotic twice a day and rinse out with mouth wash six times a day. That’s not fair. And it’s only just begun. We argue back and forth about whether she should do it in one big drink or tiny sips. Last night she looked at me and waved the syringe in my face and said “The only way I can fight cancer is one sip at a time”. I nearly cried tears of joy. She gets it. And better yet, she’s fighting.

These are the branches that keep my focus off the tree. I pray that God gives me the grace to continue to see them. The tree is huge. It clearly has the potential to destroy everything around with it’s massive impact. But the branches have the potential to soften the blow.

The Fullness of Her Life

Tonight will be our sixth night at Riley. This morning we were encouraged to hear that her white count finally made it up from zero to 84. If tomorrow brings another positive jump we’ll be able to go home. They are giving her platelets as I type because her platelets have dropped everyday since we got here. All this is totally normal from chemo, we just weren’t expecting it after this first dose. She isn’t feel sick at all, but I find myself growing more and more overcome with sadness as the days go by. During the weeks between treatment I had envisioned us being home together as a family, not in a hospital. I saw the kids playing in the yard and riding their bikes. Even taking cancer out of the picture, it just makes me sad to not be able to see her outside of hospital walls. I feel like she can’t be Izzy here (although she is wearing a sparkling super hero mask and cape while receiving platelets – it doesn’t get more Izzy than that). I began to look through old photos and found inspiration in seeing her in her fullness. I started to want to fight through my sadness for that.

I put together the photos and made a video. These four minutes encapsulate who she is, who she’s been and the impression she’s only begun to leave on the world. She has a calling on her life and the words that come out of her mouth amaze me sometimes. Of course watching this brings tears to my eyes, but they are tears I will use as fuel on days I don’t feel like fighting.

Izzy is a fighter. And you know what else. She has faith for her healing.

The New Normal

The shock of this unthinkable season had begun to wear off so I headed to work today for the first time in over two weeks.  Izzy was still having virtually no side effects from last week and I longed for some sense of normal.  It was nice to do some of our same morning routines and walk out the door to the sound of the kids laughing with our sitter.

As I pulled out of the driveway today a sense of peace began to overwhelm me.  Days like this were not to be taken for granted.  I knew that Izzy wouldn’t always feel like playing with her big brother all day in the comfort of our own home.  There would be hard days but there would be normal days too. We could do this.

When I got to work I put a pretty sign on my office door that read “thanks for caring but no cancer talk in here”. It had a smiley face on it too, just so people knew that I loved them but I just needed some space.  There were a couple hundred people at the church for Vacation Bible School, but friends politely stopped by to welcome me back and went on their way.  I sat quietly at my desk most of the day and checked email and worked on reports.  I began to feel in control of my life again.  We could definitely do this.

If you’ve ever played Jenga you know how quickly your seemingly stable tower can collapse with only the removal of a block or two.  Sometimes you can’t even remember which block caused the tower to begin to shake, but once it lost stability there was no going back.

That’s how I would sum up the time between when I left work and when we arrived at the Emergency Room tonight.  There was abdominal pain.  Phone calls.  And then what no one dealing with cancer ever wants to hear: a fever.  

Once here her labs revealed that her white blood cell count was virtually zero.  It’s not what anyone anticipated from this first round of chemo.  This is the mild dose.  Our primary team requested she be transported to Cincinnati but we chose to stay here at least overnight.  

We’ve been admitted now and she’s on her second dose of antibiotics.  They’ve given her Tylenol but the fever is still rising.  

I woke up this morning and thought I was going to have a normal day.  And you know what?  I did.  This is my new normal.  I can put signs on my office door everyday but that won’t keep the cancer out of my life.  I can do all the same things in the same order I used to do them before but it will never make things like they were before.  Before is a thing of the past.  This is today.  

Today my daughter has cancer.  And today I’m in a hospital room with her defenseless body.  And it sucks and I’m angry and I’m sad.  And sometimes that’s okay.  Sometimes I just get to be all of those things and grieve because I want the old normal back.

D is for Doll

After seven days inpatient, we are finally heading home later today.  Day one was the central line.  Days two through six were chemo, which she actually handled really well.  And today she’ll get a shot that will boost white blood cell production.  It’s a shot that she will always receive 24 hours after her last dose of chemo.

They have arranged for a home health care company to take over her weekly line maintenance once we get home.  They will come in twice a week for labs and will change the antibiotic dressing around it.  We have been trained in daily maintenance and emergency care.  They delivered all the supplies yesterday to our home.

Before we found out about this nightmare we had just started talking about the ALPHABET at night.  She wanted to be able to recognize all her letters before preschool so each night we would lay in bed and look through the flash cards sequentially.  I’d leave the one’s we had gone through out on her dresser in one pile and the ones we still needed to learn in the box.  I told her by the time preschool started we would have gone through the whole box.  We had only made it to the 4th card.  D is for Doll.

Now in place of those cards on the dresser will be tubs of alcohol wipes, latex gloves and a locked box to dispose of syringes.  But I guess there’s no rush with the letters, there won’t be time for preschool in the fall anyway.  And days we are in town her immune system will probably be too low to go into a classroom.

Staying here this week has brought about a whole new array of unexpected feelings.  I like it here.  First of all, I am surrounded by parents experiencing the same thing that I am.  Their children have some type of cancer or blood disease too.  We walk past one another and exchange a small smile that says “I understand, I just want this to all go away too.”

On top of that, I feel like we’re doing something while we’re here.  Well actually, I know we’re doing something while we’re here.  She’s receiving treatment.  She’s under constant watch.  There’s never any question about what’s happening in her body.  They always know.  We are actively doing something to fight the cancer every single day that we’re here. I’m afraid going home will be so hard.  The hardest part about those first 2 weeks after diagnosis wasn’t knowing, we’ve been down that road before.  The hardest part of those first two weeks was not doing anything.  I shaved my head less than 30 minutes after I found out it was Stage 4 because I wanted to take action.  (And I’m quite certain every piece of hair that fell to the floor had impact..somewhere).  🙂  But to know that the doctors couldn’t do anything until the next week was breathtaking.

It will be two weeks until we are here receiving treatment again.  Her body needs that long to recover from this round.  But the challenge for me will be to remember that just because the doctor’s aren’t doing anything doesn’t mean I can’t do anything.  I’m not paralyzed from continuing to petition at the gates of heaven for her healing.  God is still God whether we’re in the hospital or at home.  And while He can and does work in conjunction with modern medicine He can also continue working alone from it.  So while we’re home waiting for her body to heal from this round of chemo, I will make every effort to choose not to feel like there’s nothing I can do.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”  2 Corinthians 4:16

She is being renewed day by day, by Jesus.  I am being renewed day by day too.  And when the waiting seems unbearable I remember a passage I read from Jesus Calling the day before we found out it was Stage 4:

“Rest with Me a while.  You have journeyed up a steep, rugged path in recent days.  The way ahead is shrouded in uncertainty.  Look neither behind you nor before you.  Instead, focus your attention on Me, your constant Companion.  Trust that I will equip you fully for whatever awaits you on your journey.  I designed time to be a protection for you.  You couldn’t bear to see all your life at once.  Though I am unlimited by time, it is in the present moment that I meet you.  Refresh yourself in My company, breathing deep draughts of My Presence.  The highest level of trust is to enjoy Me moment by moment.  I am with you, watching over you wherever you go.”

July 9

We are all settled in to our hospital room tonight and Izzy is sound asleep.  The central line placement went fine today.  There are now 2 cords running down from her breast bone to just below her pelvis.  They can draw labs at the same time she is receiving IV meds if they need to.  This line will stay in the duration of her treatment and will require daily care to prevent infection.  No swimming or baths for the next 15 months. 

We also got back the bone marrow results from last weeks.  The findings did show some indication of neuroblastoma in the marrow but it was a minuscule percent.  Again just more info to further confirm a Stage 4.  

They were unable to start chemo today because ome other delays.  Infactd there are so many children here receiving hem/onc treatment right now that we are on an overflow floor with 14 additional oncology patients. Starting tomorrow means additional delays because she has to receive an injection 24 to 48 hours following chemo to boost her white blood cell production.  This means we’ll probably be here til Monday.  

Most of this day was horribly overwhelming.  But there was a small piece of encouragement. The doctors seem to think Izzy is unique in that as advanced as her disease is, she isn’t sick. I’ll take that as the Lord’s hand upon her!  And I’ll boldly ask for more of it.  

 

July 6th

We spent the rest of the week traveling back and forth to Cincy to complete prechemo testing.  These tests will be performed throughout to monitor the impact, if any, the chemo is having on the heart, kidney function, and hearing.  We’re all set for our admittal on Monday.  

In addition, they conducted 2 scans yesterday that identified several other tumors.  One on the left femur,several in lymph nodes around the large abdominal mass and several at the base of the spine.  It doesn’t change anything for the doctors.  The staging and treatment all stays the same, but it changes things for me.  To continue to hear there is more and more cancer in your child’s body feels like a blow every time.  They just care that it has spread to the bone.  But I care about every bone in her body.  I grieve every time I hear a new one has been invaded.  

Cancer.  We so often wonder why.  Wonder how.  And all of that wondering takes me no where.  It doesn’t make it go away or bring me any peace.  The only thing that brings me peace right now is crying out these words to the Lord:  

“O Come, O Come, Emmanuel,

And ransom captive Israelle.”

I sing them every day as our reality seems unbearable and every night as I lay in bed with her wishing it would all go away.  And I will continue to sing it.  Through my tears and anger too.  

 

July 2nd

We walked in to Cincinnati Children’s Hospital this morning with hope and we walked out feeling like we had been hit by a bus.  We still know this is the best place for us to be.  But as we went over 40 pages of protocol describing the horror Izzy would be subjected to over the next 15 months we began to see that hope doesn’t always come in a pretty little box.

We will spend the rest of this week finishing testing so that they can confirm the staging Indianapolis determined.  Next week treatment will begin.

We’ll start with chemotherapy.  Six doses, each of which will be administered during a 5 day inpatient stay.  There will be a 2 to 3 week gap between each dose.  They also plan to place a permanent feeding tube through her nose during the first week which will remain in the duration of the 15 months.  Most children are too ill during treatment this aggressive to eat and maintain a healthy weight.

After the 6 doses of chemo we’ll be inpatient for a few days for a stem cell harvest. After that the abdominal tumor will be removed.  Then two more doses of chemo.

Then she’ll go through what’s called MIBG therapy.  It’s a special kind of chemo that combines radiation.  Afterwards she herself will be so radioactive that she cannot come into contact with people or things for 7 days.  She will stay in a special room with lead walls, ceiling, floor and bed.  Kendrick and I will take turns caring for her wearing safety suits.  She won’t be able to bring anything in the room with her (like her favorite blanky) because if she were to vomit on it or something it would have to be destroyed.

Then she will receive her stem cell transplant.  This will require the longest inpatient stay lasting possibly as long as a month.

After that we do some regular radiation and some special kind of chemo called Immunotherapy. It’s too complicated to explain and I’m too tired.

And there it is.  That should put us at October next year.  I can not even begin to imagine the drastic toll this will take on our family. It grieves me in a way that words cannot express.

But we will press on.  We will move forward believing that the Lord is walking every step of this nightmare right by our side.  And when we are too weak to walk we know He will carry us.