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