Category Archives: Zach

Zach Update # 8 Stop and Go

(by Sarah)

Stop and Go

Zach is doing great.  The swelling is mostly gone with just a little yellowing from slight bruising.  He’s smiling more and starting to coo, as babies do 🙂 He is so sweet!  He’s back to sleeping through the night ( I know, don’t hate me!) We go in and out of processing this new reality. Life keeps going, as I know you all know.  It makes it strange to deal with these kind of things because you can’t just put life on hold to process and reflect and grieve.  This week, for instance, I had to switch our clothes from winter clothes to summer clothes – a daunting task for 6 girls plus myself (in between a gazillion sizes since giving birth not long ago!)  Praise God we’re through it (98% anyway) thanks to some of you helping out here 🙂  Thank you!  Family is in town, celebrations are to be had, school work has to be checked…and then there’s Zach, with only one eye now…It just seems incongruent.

I know  any of you who’ve experienced any kind of loss or life changing reality can attest to these thoughts.  We join your ranks!  We are trying to tune in to the process and talk about it, cry about it, as we need to in bits and pieces, taking one day at a time with whatever that day gives us.  But this too is what it means to live through the human experience.  And we mourn with those who mourn and rejoice with those who rejoice.  This is the way of the Body of Christ.  We are so blessed to do this with you, our brothers and sisters.

A few facts

This being a new journey for us, I though I’d share some of the things we’ve been learning about retinoblastoma:

  • There are about 10 or so cases in MI per year – U of M will see about three of those.  Zach was their second this year.
  • There are about 300 per year nationwide.
  • RB most commonly hits infants and children 7 years and younger.
  • 1 in 18,000-33,000 children will get RB
  • RB is fatal if left untreated.
  • The smaller the tumor and the older the child the easier it is to try to eradicate the tumor.

There are other pieces of information but I thought those points were interesting.

It’s Surreal

I still can’t believe I have a baby who’s fighting cancer.  That just seems totally surreal to me.  As is the fact that he now has only one eye. I guess I can’t wrap my brain around that one.  It’ll just have to happen in it’s own time.  Though I remember the thought I had in the room we stayed in that night after his enucleation (removal of the eye.)  There was a sign on the bathroom door in the room that said something about washing your hands within 24 hours of chemo.  And I thought to myself “why would there be a sign on this door about chemo? Chemo is for people with cancer.” And then it hit me, I was on a cancer floor – all the kids on that floor had cancer.  And my first thought was, “what are WE doing here? we don’t have cancer.” But we do.  And I have to come to terms with that.

I think part of it is because in our case, this RB presented itself first and foremost as an opthalmological issue, not an onocological issue.  We went to an eye doctor not an oncologist.  Zach had his eye removed not chemo and radiation.  So in my mind, and because it happened all so quickly, we bypassed the “cancer treatment” reality.  The fact that it was so developed and its location in the eye, and Zach’s age made the treatment protocol enucleation rather than typical cancer treatment.  Many who have it first treat it as cancer and often end up enucleating at the end of that battle. But it is cancer and we need to watch the rest of his body for any signs of cancer religiously for the next couple years.  I only pray we removed any vestiges of it for good by removing his eye.

We remain fellow pilgrims on this journey of faith,

Tim and Sarah

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Zach – Discovery and Diagnosis

We’ve gotten many questions about how we discovered this tumor so I thought I’d tell the story from the beginning.  This is a window into how we discovered Zach’s condition, interacted with physicians and came to the surgery on Monday, May 23rd, 2011.  In a future posting we’ll talk about moving forward post surgery–how his prosthesis will work as well as ongoing oncology management.

Warning: this one is a little long.  Read what you want.  Also, thanks for the positive feedback about our updates.  This has been a help for us to be writing and sharing in our journey.

Sarah

Discovery

On Tuesday, May 3rd as I was burping Zach on my shoulder I was looking at him in that sweet “mommy-looking-over-at-her-baby-as-she-burps-him” kind of way.  It’s one of my favorite views of my babies—their little heads either resting on my shoulder, looking up adoringly at their human source of happiness and contentment, or else their heads bopping up and down as they strengthen their little necks, trying to hold their head up and look around…and I was looking at his eyes. I noticed that it really seemed like I could see not only my reflection in his eyes but almost that I could see into his eye—like to the back of his eyeball.  But it was only in certain light at a certain angle.  In some angles I could see the pupil and in others I couldn’t.  But then I thought maybe I was just seeing things. I kept watching him intently that day and the next, asking people I saw if his eye looked different to them or if I was just seeing things.  Wednesday night I told Tim I was concerned.  He looked and agreed.

The next morning I made an appointment with our pediatrician for the upcoming Tuesday and an appointment at Kellogg Eye Center in Brighton for June 6 (the soonest they could get me in at the time.)  The pediatrician visit was a six-week well-baby check as well as for his eye.  When she looked she said he had no red reflex in that eye and that we should get into Kellogg as soon as possible and to tell them he had no red reflex.

When I got home, Tim did some preliminary research online on “absent red reflex.”  In that search we learned that having no red reflex is a symptom of numerous conditions, which is why you need to be seen by a specialist – to determine what is causing it.  So we called Kellogg back, telling them to let the doctor know Zach’s age and that he had no red reflex and it was a matter of some urgency.  Our ophthalmology appointment was immediately moved up to just one week later— Thursday, May 19th.

In the meantime we learned that among the conditions it could be were cataracts, cancer (retinoblastoma), detached retina etc.  So those very words entered our minds as distinct possibilities for what could be wrong with Zach.  We prayed against the worst ones, obviously!  And then we began the waiting game… 🙂

Thursday, May 19th finally came.  The morning took us dress shopping for the girls for a Bat Mitzvah we had for my cousin coming on Sunday night.  Then came the 1:00 PM eye appointment for Zach at Kellogg in Brighton with Dr. Gappy.  Tim met me there (I had Bekah and Ellie with me also) and they dilated his eyes.  We waited the 30 minutes or so and then Dr. Gappy examined him. He told us Zach had a detached retina but there were a number of things that could cause a detached retina.

*******NEWS FLASH!*********

While I was writing this part of the message, Tim simultaneously discovered right here next to me that May 8-15 is Retinoblastoma Awareness Week! How weird is that???  Our discovery and diagnosis happened on either side of this week.

Okay, back to the story…

Dr. Gappy told us he wanted us to go immediately to Ann Arbor where they could do an ultrasound on his eye to see what was causing the detachment and listed a tumor as among the possibilities.  Concerned and feeling the urgency, we made a bunch of phone calls and texts, trying to arranged for our kids to get picked up from school – Tim’s parents were able to come and take care of them, and we headed over to Ann Arbor for the emergency appointment.

I’ll never forget that moment walking to the exam room in Kellogg.  As I left the waiting room and walked through the doors toward the exam room, there at the end of the hall were at least half a dozen doctors and interns in white lab coats standing in a semi circle waiting for us.  The doctor directed us to the room they were standing near.  That image remains etched in my mind.  I think I knew something big was going to happen at that moment.

Diagnosis

The first ones to look at Zach were two Fellows, followed by Dr. Archer.  Within two minutes of looking with the main light that they shine in his eyes and the lens, and also the big contraption thy put on their head, he told us Zach had a malignant tumor in that left eye.  It was called retinoblastoma.  He brought in the pediatric oncologist, Dr. Demirci, and had him look.  Dr. Demirci went for the headset, but Dr. Archer informed him that he wouldn’t even need to put on the head contraption to see it.  He then proceeded to explain what it was, and what our treatment options were.  It was very “whirlwind-ish.”  Our heads were spinning.  I remember thinking things like, “Malignant.  that means cancer right?” and rushing through my internal dictionary of words like benign, malignant, tumor, cancer, making sure I was correctly understanding him, and more:

“is he seriously telling me the best option is to remove my son’s eye???  I just walked in this room 10 minutes ago!  You tell me my son has a cancerous tumor in his eight week old eye and then you just move right on to talking about prognosis? Can you pause for a millisecond and ask me if I’m ok?  Can I breathe?  Maybe we’re just supposed to take this like we’re having a cup of coffee over the morning newspaper.  Seriously???”

Thoughts like that were spinning around even as I listened to him inform us what we needed to do—and to do so as soon as possible.  The doctor spoke matter of factly, not unkindly, but not particularly sensitively.  And I’m thinking,

“wait, where’s the ultrasound?  Aren’t we supposed to do an ultrasound?  How are YOU so sure this is a tumor?  Are all tumors in the eye cancer?”

The answers to those questions were confirmed.  We did see the tumor in the ultrasound, and quickly came to realize that this tumor was so large that what we saw when we looked at him, thinking it was the back of his eye, was in fact the tumor – totally visible to the naked eye.  And we discovered that tumors like this in the eye are always malignant.

The news began to hit me emotionally in the quiet after the doctors left the room.  It was now me and Zach and Tim and our stroller, diaper bag, my computer bag (you never know how long you’ll have to wait in doctor’s offices!), my coffee, water bottle… I held Zach and began to cry.  I couldn’t believe it.  This sweet, beautiful little baby boy God had just given us has this thing growing in his eye that he can’t see through.  When he looks at me, all he sees through that eye are shadows at best.  Funny how it since he moved it so readily it seemed like he totally was seeing things! Tears streamed gently from my face as I took him in with both my eyes, I thought about the loss, almost as if I’d lost him.  We’d only just gotten there, we’d only just left Brighton, it had only been a few minutes…this news shouldn’t be ours…it was just surreal.

And yet I didn’t feel hysterical and confused. Somehow God enabled me to have enough composure to walk through all the next steps with clarity and a sort of matter of fact-ness that really was probably necessary.  We made the appointments for surgery on Monday and left, discussing how we’d tell the girls, pouring our broken hearts out to God, asking him to be glorified in all the things that would come to pass and praying, through our tears, for a miracle.

On the drive home I called a friend of ours whose daughter (friends with my oldest) has a prosthetic eye and I told her about our most recent news.  She proceeded to tell me that that was precisely what had happened with her daughter and immediately entered into our experience with such compassion and encouragement I couldn’t help but give God glory as I thought about the odds that we’d know a young girl with a prosthetic eye who had had RB!  More than that, with only around 10 cases of RB in MI per year, it was helpful to learn that Dr. Archer was her current doctor!  She told us Dr. Archer was one of the top specialists in the country and we were working with the best!

From there it was a whirlwind of phone calls, emotions, logistics, prayer gatherings, constant prayers, tears, emails, research, talking with different doctors, seeking second and third opinions, asking God for healing, and trying alternative measures in the three days we had till surgery.

We prayed for wisdom—and God answered with the ability to reach 8 specialists in less than four days.  We prayed for healing—the elders of our church came and prayer with us for Zach.

We even pursued a fast acting homeopathic cancer remedy that has been known to shrink tumors considerably within 24 hours! Those events and connections were invaluable even in just seeing God’s hand of providence at work – being able to connect with people who are rarely at their phone, :), finding new kindred spirits and alternative health counselors.

We came to Monday morning still hopeful that the first stage of surgery, the exam under anesthesia would reveal a miraculous healing.  However, it did not happen.  Dr. Archer came out to the waiting room where my parents, Tim’s parents, my sister Abby and brother Ben were gathered around and showed us the pictures of the MRI and the photos of his eyes.  The tumor was 80% or more of his left eye.  His sight could not be saved and the rapid growth of the tumor and it’s closeness to the optical nerve (being a port to the brain) made removing the eye the wisest measure to remove the cancer from his little body. We had prayed for wisdom and clarity and we felt both at that time. Knowing the risk of all other treatment options we chose his life over his eye.

And that, dear reader, brings us up to Update #1 in this blog…

Sarah

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Zach Update # 7: it hit me…

(by Sarah)

Well, it finally hit me this morning.  Today was hard.  The tears flowed freely throughout the day as I saw my son’s eye, no longer there.  It’s not awful to look at – just pink, with a clear plastic lens over it.  But as the swelling dissipated and his eyes were open the reality began to hit.  I’ll be so glad when he gets his prosthetic eye!… I think the grieving will come in waves, perhaps when I least expect it…

I wrote him a letter this morning to give to him some day when he’s older.  It was good to do.

I’ve been reflecting on how we grieve so differently from the world when our trust is in Jesus.  In Christ grief and hope coexist in a heart going through pain.  The pain is so real in the moment and yet so is the total confidence that there is a purpose that God is working out.  I can live with those in tension.  I have to.  And I am pleased to.  Because in that relinquishment I get to be fully human – experiencing the emotion that God intends and also trust that God will be fully God in his perfect ordering of our lives.  God gets to be God and I get to be me.

Sarah

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Zach update # 6

Healing and grieving

Zach’s healing continues.  His face looks as though all is healing well.  We thank the Lord for that and are glad to be free of complications.  As his eye heals, he is beginning to open it more and more, which has brought us face to face with the reality of the loss.  He is so precious and so beautiful!

Seeing Zachariah having lost his eye is is so difficult.  In my opinion, no part of the of the body is so beautiful as the eye.  Each eye God has designed in every person is like a jewel its setting.  Zach will experience that loss so differently than we are now.   Today we are the ones grieving.  No doubt many of you are grieving too in your own ways–family, friends, people in our congregation.   Grace and peace to you.

This morning Sarah and I spent some quiet time entering that grieving.  It’s a process.   Thank you for your ongoing prayers.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.  For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.

(2 Corinthians 1:3-5 ESV)

We are also very thankful for those who have helped our family this week.  Meals, help with kids, and other loving actions are a testimony of your love.  We’ve also received some postal mail from others with beautiful cards and heartfelt messages.  In a digital age, that is correspondence we truly treasure.

Tim and Sarah

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Zach update # 5

Sarah’s comments (with a splash of Tim)

No place like home

What an amazing day…Today, Tim read Psalm 138 and 139 which brought us to tears as we considered how God has been every moment of this journey fulfilling those promises. We were living in the midst of them!

2″I bow down toward your holy temple
and give thanks to your name for your steadfast love and your faithfulness,
for you have exalted above all things
your name and your word.

On the day I called, you answered me;
my strength of soul you increased.

The strength of our souls has been miraculously increased. I am in awe of the stability of my spirit right now. It is no testimony to me – only the greatness of our God! But my flesh is weak… 🙂 Even though we had a decent night sleeping (thank you for praying for that!) by about 11:00 AM I started to feel the incredible fatigue in my body.

We checked out two hours sooner than we thought we’d be able to! God is so in the details.

Change of pace

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My brother Jeremiah (age 21) came to visit just as we were getting ready to check out so we were able to go and get breakfast together before heading over to Kellogg Eye Center where the doctor would check the eye and remove the patch. We had a WONDERFUL time at Angelo’s in Ann Arbor around the corner from the hospital.Thanks Betsy Howell for that AWESOME recommendation! It was outstanding! Crab cake and eggs benedict anyone???? That’s what I’m talking about… 🙂 It was a really nice reprieve from the intensity of the past four days. We got to talk about life and relationships and good stuff.

I think we’ll hit Angelo’s whenever he has his monthly exam under anesthesia (EUA). A friend of ours from CCS has a daughter who had RB when she was a baby also and shared, among so many other helpful things, that they’d always make the day she had the EUA special by going to a special restaurant, bringing a special stuffed animal or doll etc. Angelo’s will the restaurant of choice i think… 🙂

Zach’s first outpatient visit

His eye looked good when we took the patch off. Mostly puffy and shut so it wasn’t too traumatic. As we’ve been home he’s been able to open it a bit more and it just looks kind of pink and glassy. After they take the eye out they replace it with a porous ball to which they attach the eye muscles and which becomes covered with eye tissue. Eventually the body just absorbs that piece as the new eye and you never really see it anymore-it gets covered by the prosthesis.  It sort of becomes the new eye ball and the base of the new prosthetic eye, which is actually more like a thick contact lense that covers it. For right now, there is a clear plastic “place holder”–a spacer holding the place of the prosthesis covering Zach’s “special eye” that keeps his lids from losing their shape while he heals.  At six weeks he’ll begin the process of fitting for the prosthetic eye.  There’s a little clearish discharge, but he seems to be doing well.  He’s on tylenol to keep him comfortable, arnica for bruising, Pre/Post Surgetone (I love homeopathy!) for post-op recovery etc. Tomorrow I’ll start him on euphrasia, a great homeopathic eye remedy… 🙂

He paints the wayside flower…

We’re scheduled for a follow up next week and then in 6 weeks we go again for a EUA where they’ll check the other eye for cancer and also take the impression of his left eye for the prosthetic.  By God’s grace Greg Dootz, the ocularist who makes the prosthetic eyes, went out of his way to meet with us briefly and show us where we’ll be working with him. He also showed us his wall of patients (their pictures!) over the years. We’ve heard from numerous people that he’s simply wonderful to work with. He was so kind and encouraging.  He reassured us, as many others have, that kids who grow up with a prosthetic eye live totally normal, productive and healthy lives. We are believing it!

When you walk through the hall at U of M next time, look for his banner.  He personally designs and crafts every prosthetic fitting for each patient as their eyes change through time.  He’s a genuine artist.  Zach will have multiple prostheses through childhood and beyond.  If you look closely, you can see examples of his handiwork.  It reminds Tim of how we say God paints each lady bug.  Here is God’s helper to paint some eyes.

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God is awesome and we love to give him the glory in all of this. Tomorrow I think, I’ll share some other thoughts on the specific mercies we’ve seen in Zach’s condition.

More in the morning. I must sleep…

Sarah

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Zach update # 4

Good news

Good news!  We’re being discharged from the hospital this AM.  Zach did great overnight and seems to be his chipper self.  We will visit the opthomology clinic before coming home, but are on our way.

Also, we got back the report about the spinal fluid sample already.  That test showed no sign of cancer in the spinal fluid.  Praise the Lord!  We’ll receive a pathology report about Zach’s removed eye as well as a bone marrow sample.  The one year mark from today would mean we’re likely out of the woods with concerns of any cancer.

Thanks for your support and prayers.  You have all been a wonderful blessing in these past few days.  We’ll keep writing new updates and ruminations as news and thoughts come to us.

Here’s a Psalm my friend Jason shared with us.  Psalm 138

I give you thanks, O LORD, with my whole heart;
before the gods I sing your praise;
I bow down toward your holy temple
and give thanks to your name for your steadfast love and your faithfulness,
for you have exalted above all things
your name and your word.
On the day I called, you answered me;
my strength of soul you increased.
All the kings of the earth shall give you thanks, O LORD,
for they have heard the words of your mouth,
and they shall sing of the ways of the LORD,
for great is the glory of the LORD.
For though the LORD is high, he regards the lowly,
but the haughty he knows from afar.
Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the wrath of my enemies,
and your right hand delivers me.
The LORD will fulfill his purpose for me;
your steadfast love, O LORD, endures forever.
Do not forsake the work of your hands.
(Psalm 138 ESV)

Blessings,

Tim and Sarah

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Zach update # 3

We are so thankful to all who are praying and helping us through this time.  We are overwhelmed with gratitude!
The following update is written by Sarah.  I’m so thankful for her love and insight.  Enjoy!

Recovery and Room Assignment

Lynley Champion arrived just as Dr. Archer was giving us the update on the surgery as Zach was in recovery (around 4:00).  Our parents left and she came up with us to recovery.  She had 83 days of experience here at Mott when her nephew dealt with some radical issues that eventually took his life.  She was a great encouragement and friend to have.
In the room, the Resident (doctor in training) took Zach’s history and enjoyed getting to know our family in this brief synopsis form 🙂 Zach is doing well.  They’re managing his pain with a little Morphine and Tylenol.  He nursed at 4:30 in Recovery and then again he took one side at 7:30.  Praise the Lord!  Nothing like mamma’s milk.  Donna Alberta (our pastor’s wife and sweet friend who came around 7:00) and I were joking about the meds.  We joked that he’s on a cocktail of morphine and mamma’s milk 🙂 mmmm….  we should coin a new drink name 🙂
We are tired and heading to rest soon.  But the overwhleming feeling is one of peace and contentment right now.  Later I’ll share some reflections on John 10 as I was reading today.  But for now, we are well.  We are being upheld by our great Saviour Jesus who is interceding on our behalf before the Father and is hearing the prayers of his saints (that’s all of you!).  There aren’t words to express our gratitude for your care and prayers.  Thank you…

Discharge hopefully tomorrow…

We have been told we will be discharged tomorrow.  If you’ve been in the hospital or known someone else who has, you know how easily that can shift!  We haven’t seen his eye socket yet.  It’s still covered with the gauze pressure patch.  He opens his good eye and looks at us, still pretty groggy.
After leaving we’ll visit the opthomology clinic–Kellogg Eye Center–just around the corner here and the doctor will remove the patch and inspect it, making sure it’s healing well.  All it needs for care is antibiotic ointment.  I think that moment will be very hard.  I’m anticipating a feeling of my heart breaking and overwhelming loss I think…
We’ll have the option to patch his eye if we desire.  I think we might do that for a bit.  Perhaps easing into the new reality…We’ll see.  For now, pray we would all sleep in heavenly peace tonight.

Meanwhile back at the ranch…

I spoke with Rebekah (our oldest – almost 12) this evening to let her know Tim would stay here the night with Zach and me.  As I asked her how the day went she so articulately and beautifully described the flow of the day, the comings and goings of helping friends, meals, naps, school pick ups and drop offs, daily routines…She was so stable and confident.  I was struck with pride at the mature young lady she’s becoming before my eyes.  Then she shared, in such a genuine, concerned and thoughtful way, that she thought this whole thing was really much harder on us as parents and adults then it is on them as kids.  How teary we would get when we talked about what was  happening and things… It was so sweet to me to see how she was tuned in to the differences in our experiences because of age and relationship etc.
Love to all,
Sarah

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