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.