It has been a while...

I thought I would give a little update on our boy. Charlie is getting there. His eye area looks better every week. It is still not fully open. I am not sure if it will open all the way since that bit of plastic tubing is sewn into his skin. His eye "weeps" a lot, but it is still healing inside so that is normal.

Friday afternoon the genetic counsellor called. She was happy to tell us that Charlie has the non-hereditary type of retinoblastoma. What a blessing. She said "just one cell, from one eye mutated." From what I could understand this means that we do NOT have to worry about the other kids. Also, the likelihood of Charlie's children having this cancer goes down drastically. I look forward to reading through all the paperwork.

I called SickKids this Monday to see what was going on and they said no appointment this month. Our next appointment will be on Jan. 11th. The OR is booked and he will be put under again. The Ocularist will be there to measure the eye socket and make a mould. One or two days later we will go to TO again but this time to the Ocularist's office. The visit will be for the first prosthetic eye fitting. After that they will start making his first prosthetic eye. We were told it should be done in 1 - 2 weeks!! Very excited about this!!

I will be honest, the past few weeks have been quite hard. We had a bit of an aftershock. Adrian and I both said that we were exhausted. It is not depression, but I was just tired and so sad for Charlie. I cannot really describe our feelings, its hard to put into words. When Willem told me Charlie had cancer, as cliché as it sounds, it felt like the air was sucked out of the room. I could not breath. At every funeral we are reminded of the brevity of life. But it is still different when you face the possibility of losing your child. We would be having a pretty good morning and then I would check the mail and have a letter from the Canadian Cancer Society and feel it again. I had this foreboding feeling I could not shake. It was hard to believe it was/could be over already. Eye gone...cancer gone.
BUT this week feels like a gift. We are exhaling. Quoting from a new and dear friend...this week we are normal & "normal is amazing." : ) Anytime you hear "cancer", its serious. But each test, his surgery, EVERY result has been good. We are thankful & we praise God. There has been so much positive news. We have met people that have been such a blessing to us.

Charlie is back. He acts like himself again.
We love Charlie so much. God loves us so much more. God SENT His Son to die, for us!


Here is a picture of our beautiful boy today. : )

C had a touch of the flu this morning. So he HAD to put on his hospital gown. : )

We wish you a wonderful Christmas
With love, the Pennings

Charlie Update

Hello,

I am sorry for the lack of posts. I have been told by a few people to give an update. (ahem... Dad and Mom)

Charlie is doing really good. His eye area is healing quite well. It is not open all the way yet, but it looks so much better. He does not have anymore pain. I will post a picture soon. Charlie acts like a 2 year old these days. He takes lots of fits and cries very easy. But he had quite a bit of stress these past few weeks, I'm sure a few more days of "normal" will help. We all really enjoyed our quiet week. There are no appointments booked yet, a letter in the mail will come next week. Then we will know about the next step and where we go to have his eye made. Hope you all have a blessed Sunday. Love, Kate

Home sweet home!

We were able to come home tonight! We are so thankful to have this part behind us. The surgery went very well, and the doctor said that as far as she can tell Charlie is now cancer free. His eye was very full. She was very hopeful about his prognosis. Thanks be to God.

This morning, when the bandage came off, was by far one of the most difficult times for us. The doctor had to keep prying his lids open, and it took three of us to hold him down.

Listening to him scream while holding him down (for drops and examinations), four times a day, everyday…was/is draining on all of us. My heart breaks for parents and children who have to go through painful treatments on a regular basis.

He is dizzy, which they said is normal as his center of gravity has changed. Charlie's eye area is swollen right now. There are also a few stitches and a small tube under his eye. This is holding a piece of plastic under his skin in place. The reason for this is so as the eye socket heals, it heals big enough for a large mold to be made for his future adult prosthetics. It does look like there is an "eye" in there. Its a temporary prosthetic that is similar to a large contact lens. We are so happy about this, we were not counting it to look like an eye after the surgery. It is not really black & blue, which is another small thing to be thankful for. Late this evening Charlie saw himself in the mirror in my room, & he cried. We were not going to have him look in the mirror, but I was not thinking when he came in my room. Since he was blind in that eye he had no idea, poor guy.

Charlie was a real trooper, and the hospital was amazing. We are thankful for the means that God has given us. Tonight, he seems quite happy. He ate something and is glad to be home.

We have to continue all the eye drops for a while. We wait to hear from the genetic testing and pathology. Then we will know for sure one way or another.

Here are a few pictures of our time spent at the hospital.

**If you are going to show this to your kids, just know that the last pictures are slightly graphic**

In our room - waiting for Charlie to fully wake up

With his bear that never left his side

Our favorite nurse

Patch off - at Timmys in the hospital

We are thankful to God that all went well this week and for the good news the Doctor was able to give us.

We have cherished your prayers and we have been so encouraged by your uplifting cards

and e-mails.

Thank-you all very much. Now, I'm off to bed. : ) Goodnight

Thoughts from Charlie

Charlie is booked in for the enucleation surgery this coming Monday at 9:30am. We have to be at TO Sick Kids by 7:30. Adrian and I have mixed feelings, but once its all over I am sure things will start to feel “normal” again. God has given us so many blessings during the last two weeks, and has given us a deeper appreciation for our family and church family.

Some people ask us what Charlie thinks about the last two weeks and how he has been handling it. We think he has been doing very well. The first week when we were going from doctor to doctor I would find him laying on the floor often with his bear, and he was very weepy. I am sure he could feel the stress we had. This week he is a lot more hyper the normal, he has been getting some extra attention. Which we don’t mind at all. : ) We are quite open with him about what is happening. He has always handled situations better if he knows what is going to happen in advance. We always tell him to ask us any questions he has.
One of my friends thought I should write some of the things he has asked/told us. So some thoughts from a very “matter-a-fact” four year old.

“There is a bad guy in my eye, and the doctors need to take it out. Then the policemen will shoot the bad guy and throw it in the garbage.”

“Will there be lots of blood when they take my eye? Will they cut me? I don’t want a robot eye”

“They will give me a new eye so the bad guy does not go in my body, because they can’t give new brains”

“When I get a new eye I don’t have to eat my salad anymore”

“Glasses keep my good eye safe. I look handsome!”

“The bad guy’s name is cancer”

We had a big talk about how awesome robots were, so now he is starting to think that having a robot eye would be pretty cool.
I look forward to tomorrow, a quiet Sunday. & to those who really know me....I will try not to take a million pictures of him. : )

I hope you have a blessed Sunday,
Kate

New Specs

Charlies new glasses, keeping that good eye safe and sound. : )

Thankyou so much to Charlie's "favourite eye doctors" (the Boumas) for buying his first pair!!

You both have been such a blessing to us.

A perfect, Normal day

Today was our first “ordinary” day since we found out that Charlie has cancer. Adrian is gone to work, there are no appointments and the kids and I are at home doing normal things. Yesterday the casts came off, so Charlie has his hands back! He has been coloring, playing with Lego and setting up his trains. He is so happy to being doing these things simple things again. I am thankful for this normal day, I am even thankful to be catching up on housework and laundry. : )

The last time I wrote was Thursday evening. We had just found out that the cancer was not in Charlie’s brain. That night seems so long ago already. Adrian and I were so thrilled, so thankful to God. We still are, but we are still trying to learn to be thankful for this new reality we have been given. Our sweet son will be losing his eye next Monday. While this seems small in comparison to the possibility of cancer in his brain, this is still  difficult to accept. Our son’s face that we love so much will be changing. He will not be able to look up at us the same. The mother’s heart in me always runs ahead and thinks of him being picked on, or him dating, & even the genetic testing that will have to be done if he gets married and desires children. This prosthetic eye, however small of a deal it seems to others, will change his life. The amount of times we will have to go to Toronto as he grows is overwhelming to me right now, so we have to take one appointment at a time. I still need to learn to not "worry about tomorrow". We know that God has had this planned for our Charlie & our family since the beginning, and everything works out for good. Thankyou again for the support and prayers.

Here is some information about Charlie’s upcoming surgery from the
canadian retinoblastoma society weBsite.
(http://www.rbsociety.ca/)

ENUCLEATION

The process of removing an eye while leaving muscle tissue intact is known as enucleation.  For many cases of retinoblastoma, and particularly unilateral cases, enucleation is considered the primary treatment.  Removal of the eye in unilateral, non-heritable cases is curative.  While the child will suffer some peripheral vision loss as a result of the removal of an eye, the risks associated with attempted treatment, including spread of the tumor beyond the eye, are generally viewed as too great.  Removal of the eye also spares the child invasive chemotherapy and its inherent risks. An eye is generally removed only if there is a significant threat of the tumor spreading beyond the eye.
The actual orbital implant, the shape of a ball, is inserted into the socket and the muscles are then attached around it to provide mobility to the artificial eye. The orbital implant will remain in place for life unless complications occur. For this reason the largest ball possible is fitted for young children so that the eye socket will have adequate support as it grows.

After the eye is removed, extensive bandages are placed on the eye to keep pressure on the socket to prevent swelling. These bandages are removed before the patient is discharged normally about 48 hours after the surgery.  Bruising and swelling of the surrounding tissue is common.
Once healed, a mould will be taken of the child’s socket which is then used by an ocularist to produce a prosthesis specifically for the child. The mould may be taken during an examination under anesthetic or at the ocularist’s office with the child awake.  The prosthetic sits under the eye lid and over the conjunctiva and muscles that contain the orbital implant. The tissue inside the eye is pink in colour and closely resembles that of the tissue found inside of one’s mouth.   The ocular prosthetic will match as closely as is possible your child’s natural eye, and is important to stimulate normal socket growth as the child grows.

Prosthetic Eyes

The creation of a prosthetic eye for your child is part art, part science.  A mould will be made of your child’s socket after it has healed following removal of the eye, and at any time a new eye is needed.  From the mould a prosthetic eye will be crafted.  The prosthesis itself is normally made of either plastic or silastic.   The iris is hand painted to ensure an exact match, and the eye is veined for a realistic appearance. 

A child’s prosthesis should be replaced every few years to ensure optimal fit and appearance.  It is possible to have the prosthesis modified, or “built-up” until a new eye can be made.   Children, particularly small children, grow very quickly, and frequent visits to the ocularist may be necessary for children under five (perhaps as often as every three or four months).  In adulthood the prosthesis is normally replaced once every 3-5 years. It may be necessary to have an ocularist polish the prosthesis annually to keep protein and bacteria build up to a minimum.

The prosthesis can easily be removed from the socket by hand, or by using a small, specially designed suction cup.  It is generally recommended to take the eye out once a month for cleaning, but beyond that the eye can be left in place. In fact, excess handling may cause the eye socket to become irritated.

Our Miracle

Praise God, the cancer is contained to his eye!!! Thank the Lord

Charlie had his MRI today. It’s amazing how God places people in your life. My old high school friend Len Verhey works at TO sick kids and works with the head of Radiology. This Doctor made sure an extra scan was done, pretty much the best you can get. Len also met us for coffee while the MRI was being done and let us pick his brain. (Thank you so much doctor V)
We were called on the way home by Charlie’s doctor and given the news that the cancer is COMPLETELY contained in the eye. She was SO excited for us. It felt like she was surprised. So yes, he will lose his eye on the 28^th, but we are not thinking about losing our son tonight!!! Praising God for answered prayer.  Charlie still has quite a bit to go through this month. But right now, we are so happy. Thank you everyone for your prayers. God answered them in the way we were praying He would.

Charlie's Eyes

This is what Charlie's eyes look like after his eye exams.
Every exam they put drops in to dilate the pupils.
You can see the tumor/growth clearly in this lighting.
Charlie calls it his "cwazy eye" : )



Amazing… MRI tomorrow!

So we are back from our appointment at TO Sick Kids. What a fantastic hospital! Not a whole lot new in the way of information. Same exams and same ultrasound.  But yes, we are booked in for a MRI tomorrow at 1:00pm!!! We will be given the results tomorrow as well! We are so thankful that tomorrow we will KNOW what that growth is doing. The two doctors we saw today were pretty much convinced it is Retinoblastoma as well. The head doctor is talking about taking out Charlie’s eye next week already. We will be thankful beyond words if that is the only treatment Charlie needs. Some kids go down such a long and painful road. But we are still a little bit sad about this. He is losing one of his eyes due to cancer. He will never look quite the same to us. We were told that his prosthetic eye might be able to move back and forth a little bit, but not up and down. He will also have to wear “fake” glasses every day. I never thought of this, but it makes sense. If a kid only has one real eye we better make sure it’s protected.
Adrian and I are going to find him some fab retro glasses. : )

So tonight Adrian and I are taking it easy, hanging out with Charlie, thanking God for tomorrows MRI and praying for good results. With love, Kate

Just from Kate

It is quiet here. Charlie and Adrian are sleeping, and the two little ones are sleeping over at my in-laws. I have been feeling really good for a few hours, maybe I have been on a bit of a high. I have been so busy, there has not been much time to think.

It has just really hit me that tomorrow it truly starts. All the tests. I am so scared for our son. All I can think about is my four year old being in pain. I want to know what is wrong with him, but at the same time I don't. He is so normal right now. The same old Charlie. I am trying to trust that God has a good and perfect reason Charlie has to go through this right now, even if I hate every test and the diagnosis. Tomorrow scares me. I am praying we feel Gods arms around us every minute tomorrow.

My husband and kids sleep through anything and everything. Good for me, since I am such a night-hawk. I have been blasting this song tonight over and over. I know its not "FRC" music. But I need a big song right now. : )

I know I have said it, but thank you again for your e-mails. I love reading through them all at night.

We are in!

We have an appointment at 8:00am tomorrow morning at Toronto Sick Kids. Everything is going so fast.
Now the ball is really going to get rolling when it comes to getting answers and a diagnosis.
We are thrilled and scared at the same time. Once again, Thank you for your prayers.

He who dwells in the secret place of the Most High
Shall abide under the shadow of the Almightly.
I will say of the Lord, "He is my refuge and my fortress;
My God, in Him I will trust"

Surely He shall deliver you from the snare of the fowler
And from the perilous pestilence.
He shall cover you with His feathers,
And under His wing you shall take refuge;
His trust shall be your shield and buckler.
You shall not be afraid of the terror by night,
nor of the arrow that flies by day,
Nor of the pestilence that walks in darkness.
Nor of the destruction that lays waste at noonday. 

Psalm 91 vs. 1-6

Surprise Appointment

Monday afternoon we were told that we would get a phone call within 48 hours with our next appointment date. This next appointment would be to see a Pediatric eye surgeon. Late last night I turned my phone on vibrate thinking that I want to sleep in until the kids wake up. I was done with talking about it for a few hours. So I woke up at 8:30 from my mom banging on my door saying “Heather said you got in and they want you to be at Mac at 10:30.” So after flying around the house and Adrian flying home from work we were on our way.

After all of the same general tests were done and same words were said, we got down to it. I asked Dr. Sabri not what his profession opinion was, but what he personally thought. He said he believes its retinoblastoma. Now we have heard this from three doctors. We are no longer hoping Charlie does not have cancer. We are praying for the cancer to be contained. Three doctors have told us to not try and save his eye, and we are peace with that. So, we did not really learn anything new today. It was just the next step through the system.

We committed right away that we were not going to start googling and looking up information like crazy. We only  read what doctors put in my hands and learn from what they tell us. We never have even heard of Retinoblastoma so if you are interested in what it is, here are a few facts from what doctors have told us so far.

- It is a cancer of the eye that only affects children.
- It originates from the retina.
- If untreated, it is almost always fatal.
- It is hard to detect as children to not complain about vision. The most common way of detection is the presentation of a white pupil which you can see in certain lighting. (What we noticed with Charlie)
- It seems to be a lot more serious when both eyes are affected. (Charlie’s other eye looks to be perfect and the vision 20/20 from what we are told)
-This is a very treatable form of cancer. Right now we are just waiting to see the extent of the growth.
- It is not possible for this type of tumor to be benign.

We are clearly seeing Gods hand in how fast things are going. How can you not?
Dr. Bouma saw us after hours. He texted Dr. Calotti who agreed to see us during lunch on Monday. Dr. Colotti’s receptionist is Heather Dehaan who knew how to reach my mom when no one could get ahold of me this morning. Dr. Sabri (pediatric surgeon) agreed to see us this morning even though I heard a nurse tell someone else the office was booked up for months. Dr. Sabri trained under a (according to him) famous Doctor at Toronto sick kids. He said he would personally call her today to try to get us in to see her as soon as possible. We were promised a phone call either way today by four letting us know what is going on. We have seen three doctors in a little over three days!!  We are so thankful. But in all honestly, this also scares me. We are being pushed through the system so fast, it makes it seem so much more serious and real.

Right now we are praising God for how things are moving fast and also pleading for “good” news about the extent of the cancer. Thankyou again for your notes, calls, meals and most of all prayers. I will let you know when we know. :)

Kate

A blog for Charlie

As many of you know there is much concern about our sons eye. I was told that starting a blog to update family and friends about any developments could be helpful. It is comforting to know people will pray for specific needs as they arise. Many people have questions, and we will be honest about what is happening in our little family. I hope no one will think I am jumping the gun by starting a blog. We have appreciated so much all of the e-mails regarding Charlie. Rather than trying to answer all of them, I thought some people would like to have questions answered by this blog.

For those who have not heard, late Saturday evening I became concerned about the sight in Charlie’s left eye. When we covered up his right eye the left eye was not tracking. A call was made to Dr. Bouma and he so kindly took time out of his weekend to look at Charlie's eye. After an examination I was told that Charlie’s left eye is blind and a mass was causing this lost in vision. Dr. Bouma said that there is a very great concern of cancer. Dr. Bouma was able to set up an appointment for Monday at 12. I would like to publicly thank Willem and Joni for caring for us during those unreal moments. We are blessed that when I was told Charlie most likely has cancer I had someone holding me and bringing my son to the great Physician  . Thank you both so much.

Today we saw another Doctor in Brantford. This doctor also confirmed that Charlie is unable to see out of his left eye. He also saw a mass. Initially he gave us more hopeful news that he thought the likelihood of cancer was 50%. We were also told the wonderful news that Charlies right eye looks perfect, which we are thankful for.  After an ultrasound on his bad eye the doctor was not quite so optimistic about the 50% chance of cancer. The ultrasound seemed to indicate the mass was filling the whole eye and showed there could be calcified spots in the mass.

The doctor told us that if his child had Charlie's condition, he personally would not fight to save the eye. Adrian and I had already talked about this and think if it is safer to simply remove his eye we would be fine with that. He may have been blind in that eye for up to two years and we never noticed anything off about him. He would have a normal life with a prosthetic eye.
We will be called in 48 hours with our next appointment which will be to see a pediatric eye surgeon at Mac.

Our largest concern and fear at this point is the question "has cancer gone into his brain".
We are asking for prayers for this specific concern. We are begging God that this tumour/cancer is contained and has not spread. We ask for your prayers.

We are so thankful that God has given us such supportive family, friends and church family. We are overwhelmed with support, it is such a blessing.

I warn you in advance, this blog thing could become therapeutic for me. So don’t be surprised if, along with updates,  many pictures and songs are posted here. : )

Please pray for our Charlie with us.