Tag Archives: retinoblastoma

Zach Update #12 — Zach’s new eye


This week we finally got it–Zach’s new eye!

On Wednesday Sarah and I went together to Greg Dootz’s office at the Kellogg eye center in Ann Arbor.  All I can say is WOW!  I’m amazed at how real it looks.  There were two special moments: The first moment was seeing the eye itself in Greg’s hand.  It was the work of many hours of fitting, design and craftsmanship.  By just looking at the eye alone, it was obvious that this new eye looked just like Zach’s other eye.  Zach’s prosthetic is so well done, it’s remarkable.

The prosthetic eye is a convex fitting that inserts on top of the replacement eyeball (orbital implant) and under his eye lids.  It has a certain range of motion–moving with the motion of the implant.  Here’s what it looked like in Greg Dootz’s hand.

Secondly, seeing Zach’s beautiful face restored to completion and balance was a sight to behold.  For the past 3 months we’ve enjoyed his smile and everything with just one eye, but it was sometimes awkward in public and just plain hard knowing that such a beautiful part of his body was missing.  Seeing Zach’s face now restored was an awesome moment.  And now you get to see him too.  By the way, can you tell which eye is the prosthetic?  Bet you can’t!  It’s hard to tell in person as well.

We’ll add some more reflections in the days to come, but we just wanted you to see the answer to your prayers for our son, Zach.  He’s cancer free and both of his exams under anesthesia have revealed no cancer in the seeing eye.  And now his face looks complete again.

It’s such a joy to see his whole face again.  Looking forward to seeing you in person…

Blessings,

Tim, Sarah and Zach

PS.  If you look on the wall behind us, you can see photos of other patients of Greg’s.  Soon Zach will join the wall of fame!

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Zach Update # 11 – Great News: Pathology

Just a quick update on this holiday weekend to report that the pathology was (finally) read. We are overjoyed to report that the pathology was a very good report! It revealed that the malignant tumor was fully contained within the eye which was removed. The blastoma had not gone to the optic nerve nor to anywhere beyond a rather safe zone within the eye.

Follow through for Zach therefore includes frequent exams (every 6 to 8 weeks and under anesthesia) to observe the good eye. He will NOT require chemotherapy or radiation.

Next week Monday, July 11th, Zach will have the first of those frequent exams of his good eye. This is a typical protocol for retinoblastoma patients. He will also be sized for his prosthesis at that time which will then be ready in August.

We are so thankful to the Lord for hearing and answering our prayers. You have joined us along the way and we are grateful to you too.

Have a wonderful Independence Day.

Love,
Tim and Sarah

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Zach Update # 10 – Waiting…

Waiting…

Thanks for all your wonderful comments about our blog.  We’ve enjoyed sharing what’s happening.  Thanks again for reading and praying for us.  Recently a lot of you have asked if we have received the pathology report.  Unfortunately the answer is “no, not yet.”

Regretably,  this report is taking much longer than we had anticipated.  Announcing the pathology report was going to be my next post 3 weeks ago, and we are still waiting.  Obviously we have called, and will call again, but there are things that are out of our control even though we wish we were in control.

We do promise that we’ll let you know as soon as we know.  In fact, if you haven’t already, you can look over to the right at “Follow My Blog” and subscribe via email.   You’ll get an email whenever we posting anything (and can unsubscribe at any time.)  That may help some of you who keep logging in but not seeing anything new.

Specific stuff

Just a reminder about where we are right now.  The first two tests for outlying cancer were perfectly clear: bone marrow and spinal fluid sample.  This third test is the pathology of how far the cancer had grown in the eye that was removed.  We know it was malignant.  What we are waiting for is news of how extensive the cancer had grown.  Usually the cancer is encapsulated within the eye and that is what we are hoping for in Zach’s case.

If  you’ve ever waited for something with no way of knowing when the wait would be over, you know what we are doing right now.  Waiting…

As Proverbs 13:12 says,

12 Hope deferred makes the heart sick,
but a longing fulfilled is a tree of life.

Or as Psalm 33:20-21

20 We wait in hope for the LORD;
he is our help and our shield.
21 In him our hearts rejoice,
for we trust in his holy name.

In the mean time…

In the mean time, Zach is doing really well!  He has completely healed from the surgery; he’s growing and is doing great.  He never saw out of the bad eye and probably doesn’t miss it.  He’s nursing well, smiling lots and is in general simply a great baby.

Last week Zach travelled with Sarah and I to California to attend the wedding ceremony of one of Sarah’s six brothers, Sam. It was great to see Sarah’s family (and especially the ones on the West Coast.)   Zach’s sisters all stayed home with friends’ families (aren’t they jealous!)

Here’s a photo of us in Santa Monica at the coast.

Blessings,

Tim, Sarah and Zach

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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 # 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 # 2

Surgery Finished

Zach is out of the operation and the surgery was successful. After consulting with our doctor midway through the surgery, it was clear the removal of Zach’s left eye was the wisest option to arrest the growth of the cancer. The growth had already spread to consume over 80% of his left eye.

There are two things for which we greatly rejoice:

  1. As far as we know the cancer is completely contained in that left eye. With that eye removed, we are hopeful that we have successfully removed the cancer in its entirety.
  2. Secondly, and most importantly, Zach’s right eye looks completely healthy. This means that the cancer was only in the one eye and not both. There is a big difference between one eye and no eyes! Lord willing, he will have one healthy eye to give him ongoing sight through his life.

Zach will have many challenges ahead–regular exams of his right eye to scout out any cancerous growth in that good eye, learning to adapt to using one eye. We are thankful that God will be with him (and us) every step of the way.

The surgery today included a sampling of spinal fluid and bone marrow sample to look for any evidence of cancer elsewhere. Please join us in praying that there be no cancer anywhere else.

We haven’t seen him yet. Please pray for us as we know that this will be the beginning of a very hard reality that will take a long time to adjust to. Pray for God to sustain us today emotionally, spiritually and physically.

Yet, in all, we are so blessed! Here in the hospital, we see many others whose troubles far surpass our own. Our hearts go out to them.

Thank you for praying…

Much love,

Tim and Sarah

PS. I’ve included a picture below of the exam under anesthesia of Zach’s eyes. The one on the top is his healthy eye (right), the photo on the bottom is the eye with cancer (his left eye). As you can see the radical difference between the two is extreme. We’re thankful for the healthy eye.

20110524-100701.jpg

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