Beginning of a Long Journey

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May 22, 2012

 

Wes. Has. Cancer.

I cannot wrap my mind around how many times I have had to tell someone this in the last 48 hours.

Wes has Retinoblastoma.  For all of you fortunate enough to have never heard of this, it is cancer of the eye.

Here’s the story of a boy named Westley, who was diagnosed with cancer on Friday, September 7th, 2012.

That date will be forever burned into my memory I think.  Although, with all the other facts I now know and will know over the next 6 years of our journey to kick cancer to the curb, maybe I will forget it.

 

We went to Wes’ 6 month check-up on 8/17/12.  He was actually 6 months and 18 days at that point, but it was the first appointment we could get even though I scheduled it a month in advance.  A couple days before we go in, I am talking to my mother-in-law (Mary) about things I want to ask the doctor.  She says I should ask about his eye because it seems like it is crossing a bit, sometimes it is more noticeable than others.  I tell her I have noticed that his eye doesn’t give a red-eye in pictures.  I start to get nervous about his eyes being crossed and she comforts me by saying that he will probably just have to wear a patch for a while on the good eye to strengthen the weak one.  I am a woman obsessed.  For 2 days I stare at his eyes – is that one crossed, is it more crossed now than earlier today, do you notice it, how about you, and you?

We go in to the doctor, and it is a doctor within our main doctor’s office but not our regular doctor.  She does all the usual doctor stuff when we come in – is there anything you are concerned about today, how’s his motor function, what/how much is he eating, make sure he wears sunscreen, etc.  I tell her about the eye, she says we’ll take a look.  She does his physical exam, and says yes his eye is crossed.  She says she’ll do a referral to a specialist, will probably take two weeks or so to get a call for an appointment but assures me that two weeks won’t make a difference and he will likely just need a patch for a bit and potentially surgery.  I thank her and tell her I feel better because for the past two days everyone but Mary was saying they didn’t see anything wrong with his eye and I need to stop freaking out about stuff, but I wanted it checked because of Jake’s history of having Retinoblastoma when he was a baby.  She stops and says “oh, dad had cancer in his eye?  Let me take another look”.  What?!  So she looks again, says “no, I don’t see cancer”.  Okie dokie.  We will go home and wait for an appointment.

Now, if you are a mother or father you can imagine that I was already pretty freaked out at the possibility of Wes needing surgery to fix his crossed eyes.  The doctor had given this condition a name – esotropia – crossed eyes.  Yep, you know it, I went home and googled esotropia.  Seemed surgery had split reviews, and the sooner you start working on it with a patch the better.  Okay, I will wait the two weeks the doctor told me it could take to get an appointment.  I start joking with everyone about how we have decided our family Halloween costumes this year will be Wes as a parrot with a patch over his eye (his daycare calls him Squawk because of the noises he makes so this seems fitting), dad as a pirate with a patch over his prosthetic eye, and me as a wench with a patch over one of my eyes.  Hardee har har.

I wait two weeks.  Then, it’s Labor Day weekend, so I wait until Tuesday.  On Tuesday I email our doctor’s clinic and ask for a phone number for the eye clinic.  They respond quickly and give it to me.  I call over to the eye clinic, and after a 10 minute phone call of a nice lady named Melanie telling me she can’t even find my referral, oh no she did find it now, not sure what she can do to help me, we end with her telling me they are booking out to February 2013 but she will send my information over to one of the schedulers there and see if they can do anything better.  A little bit later Melanie calls back and says they squeezed us in on October 9th.  I am still not satisfied this is soon enough, she scoffs and says I am lucky.  She proceeds to tell me that if the referral was deemed “medically urgent” we would get an appointment in a day or two.  I took this as her telling me to read between the lines and go back and have the referral changed to “medically urgent”.  Thank you Melanie, I will give that a go.  I hop back on the phone to our main doctor’s office and leave a message with a nurse for our doctor, stating that this is what I am requesting.  Three days and many voice mails back and forth and some nurses saying “well I don’t know what you want us to do about this”, our main doctor gets involved.  He apparently calls over to the eye clinic and says the red-eye reflex is missing in Wes’ left eye and dad has a history of eye cancer.  Within 10 minutes they call me and tell me we have an appointment the next morning.  I remember going on a family walk the night before the appointment, and talking about how this is the step that got everyone moving.  I joke that everyone was probably so irritated with me they figured they should just get us in there so I will leave them alone.  Jake laughs.  Then I say that the alternative is that our doctor came into the scenario and immediately saw something serious could be going on so he got them to get us an appointment.  Jake says no, no, they were probably just irritated with you.  So much love right?

I asked Mary to go to this appointment with me because if they said he needed surgery I really wanted someone else there.  And since they rushed our appointment in, I want to give them the utmost respect of getting there on time.  So we left super early, planned for a two to three hour appointment as they instructed us to, and we arrive.  At about 10am they take us into an eye exam room, typical to what we are all used to when we go to the eye doctor.  A lovely woman named Callie starts his eye exam.  The three of us are all laughing at Wes’ antics and Callie’s willingness to be silly to get him to do what she needs – I mean, this woman wore a sticker on her nose people.  About 15 minutes into the exam, she covers Wes’ left eye and he’s fine.  She covers his right eye and he freaks out and is flailing his arms and instantly starting to cry.  Hmmm.  She does some other minor light-following test, and then she covers the eyes again.  Again he instantly panics when she covers his right eye.  I look at Mary and say “I don’t think he can see out of his left eye” and I am crying.  I don’t even realize I am crying, it’s just happening.  Mary is repeating “it’s going to be okay, don’t worry, it’s going to be okay, don’t worry”.  Callie says  nothing, enters some info in the computer, stands up and says that Dr. Collins will be right in and leaves.  Now I’m panicking.  Why did this nice woman not respond when I said that out loud, and not say a thing as I am crying????

Dr. Collins comes in.  She looks at Wes’ eyes, asks us some questions about the history of what we noticed that led us to get this appointment, blah blah blah.  Why can’t my baby see out of his left eye lady??  She says they are going to dilate his eyes and get a better look at things.  Her “fellow” Dr. Shaw takes a look at his eyes, they mumble something about Callie thinking Wes had an APD but they aren’t sure they see that, we all laugh about how much Wes is enamored with Dr. Shaw.  They leave, nurse comes in and puts the drops in Wes’ eyes to dilate them and sends us out to the waiting room to wait thirty minutes for the dilation to occur.

For those of you who know me, you can guess what I did next.  Yep, on my phone looking up what the hell an APD is!  I determine that it is a pupil dilation difference between the eyes and it isn’t caused by anything specific but is an indicator of something else, and there is a list of something like 20 possible things that can cause an APD.  Alright, so now I am thinking given the possible APD and the not being able to see out of his left eye, maybe he has a lesion.  Before I have time to process what that means, they call us back in the room.

Dr. Collins gets out a magnifying lens and looks at Wes’ eyes for what feels like forever.  Mary can’t take it anymore and asks what she sees.  I smile and tell Mary to let Dr. Collins do her thing.  Dr. Collins says she doesn’t have good news.  She says she sees a tumor in Wes’ left eye.  It’s about 11am.

Boom goes the dynamite.

Mary and I are crying, then we pull ourselves together and say out loud that he is going to be fine, we will deal with it.  Both thinking okay, he will have his eye removed and have a prosthetic like his daddy, we can deal with that.  Dr. Collins sends us for an ultrasound on Wes’ eye (who knew?!) because this will tell us if there is calcium in the tumor and if there is, it is cancer.  I am sure that the people in the waiting areas around us were dealing with their own issues because no one goes to this clinic for just a run of the mill eye exam, but Mary and I are just processing, panicking, crying without a care in the world about where we are or who can hear us.  They do the ultrasound, more waiting.

We see Dr. Collins again and she has Dr. Shaw with her.  She tells us they did find calcium so it is cancer.  She tells us that the UW Hospital system is the best place for us to be dealing with this, that she has handled many retinoblastoma cases herself so she is glad she is our doctor.  She says it doesn’t appear to have spread to his other eye but they want to do an MRI next Tuesday to double check.  What?? It can be in both eyes??  She leaves to go find an ocular oncologist coworker of her’s and have him come take a look.  This guy and his “fellow” come in, they look at both eyes.  Yep, it’s cancer.  They leave.  Dr. Collins is talking us through the MRI and other tests he may need such as a spinal tap and a bone marrow asperation because they need to see if it has spread to any other part of his body.  What?????????  This just keeps getting worse.  Every time I think “okay, we can deal with this, he will be okay”, they make it seem worse and worse and worse.

Through our question and answer time, Dr. Collins says that so far they can’t see anything in the “good” eye but they won’t know for sure until they do the MRI.  And from what she sees right now, based on where the fluid build up is and how the tumor looks and is placed, she doesn’t think it has spread.

We will go in on Tuesday for the MRI, and from there Jake and I will have to make some difficult decisions on a treatment plan, and then the treatment plan will start within 7 days or so.  So in a week and a half, my baby will likely either have his left eye removed (probably course of action if the cancer hasn’t spread to the other eye or other parts of the body), or start chemotherapy (cancer has spread).  Then, every 6 weeks until he’s 2 and then every 8 weeks until he’s 6, we will have to go in and have him sedated and have an MRI done so that if the cancer comes back or spreads we can catch it early.

More info to come.

Oh, turns out, lack of red-eye reflex is the #1 indicator of retinoblastoma.  This picture is from May 22, 2012.  Over 3 months ago.  That f*cking cancer is in that eye right there.  Like an alien trying to take over my baby.  F*ck cancer.

 

For now, here’s hoping our baby has cancer in only his left eye.  Strange thing to hope for.

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About grabafriend

I am 34, a mother of one sweet little 6 1/2 month old baby boy, wife of a social worker, trainer/walker/provider for 2 wonderful dogs, volunteer foster home for a Min Pin Rescue (www.minpinrescue.org), co-owner of two doggie daycares in Madison WI (www.thedoghaus.biz), and part owner in a giant behemoth of a pontoon boat. Yep, think that's all the labels I can affix to myself. I am blogging about my journey to get in the best shape of my life from 9/1/12 to 10/1/13, and bring my friends along for the ride by asking them to pick a month and focus on some healthy activity with me.

13 responses »

  1. I read this twice with tears just streaming down my face. I don’t know why these horrible things happen to such wonderful people. I’m so very sorry you all are going through this and will continue to keep all three of you in my thoughts and prayers. Wes is a little fighter and he will kick cancer’s ass.

  2. Angie, Jake & Wes – I am so sorry to hear about this scary diagnosis. I will be sending all of the positive thoughts that Belle, Maxie & I can muster. I hope that you focus on all kinds of positive things, including health and wellness, and not let the fear crowd out all of the love that will be pouring in.

  3. Angie, you wrote this so courageously and beautifully. As I was driving home last night I was thinking and just KNEW that he only has cancer in that one eye. I just KNOW it. Tuesday will show what we know. Wes is so well loved, as are you guys. He will come through this with flying colors and have a great story to tell in his amazing future years. Again, anything you need…..

    F*uck You, You F*ucking F*uck, Cancer!!!!!!!!!!!

  4. I am just stunned. You did a great job standing up for your son and getting the specialist appointment quickly; it’s a sad commentary on the medical scheduling system that made you have to do that, but I know that nothing will stop you from advocating for your son and doing all the right things to kick this to the curb. I don’t much about retinoblastoma but I was immediately on the internet looking it up – from what I’ve read you caught this earlier than is typical thanks to your ‘mom vigilance’. As a mom myself, I will be sending your positive energy EVERY DAY because we mom’s know how to take care of our babies. Be strong – I know you will be. Thinking of you. Christina.

  5. F cancer! I kicked it and so will your little angel! I am so sorry. Words can’t begin to express how my heart aches for you right now. I can’t stop the tears from flowing. Please, please, please let me know if there is anything I can do, even if it is just to listen. Times like these definitely don’t make sense, especially with babies. Just know that you will get through this and will be all the more amazing because of it! All my love to you, Jake, and Wes. Love, Jamie Villa

  6. Jake, Angie, and Wes: I have raised two kids and now have 2 grandchildren. I can’t imagine how you feel but my thoughts are with you as are my grown children’s, Graham commented “what can I do I know a lot of rich people! My daughter immediately said get me a flyer “I know people who can help” soon you will have more prayers than just about anyone. Hang Tough!!!

  7. To my sweet grandson. You are so strong, healthy and happy. You have been such a joy to me for the last 7 months. You have wonderful parents and so many family and friends that love you. I see all the prayers that are sent to you and it warms my heart. You have a long journey ahead of you but we are all by your side and we will kick this together. I love you so much and if there is any thing you want you know you can come to gramma cause I’m going to always spoil the hell out of you.

    • Angie, Jake & Wes,
      I don’t even know what to say—it
      all is so heartbreaking!!! So sorry
      you have to go through this. Wes
      is adorable:) Please know you are
      in my thoughts and prayers.
      Ceil (Mary’s cousin)

    • Mary – We are all so fortunate to have you in our lives. The time you have spent with us at doctor appointments in the last three weeks is something I will remember for the rest of my life.

  8. Jake, Angie and Wes, Thank you for your posts. So many people feeling your pain and wishing they could help ease it. You are receiving such a wonderful outpouring of love and prayers. Please know that we cousins in Minnesota, South Dakota and Georgia are pulling for Wes and all of you are being held close to the heart as you progress through your journey. Linda, Ceil, Derek and families

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