Category Archives: Family

.::we judo-chopped this tumor in the arse::.

For those of you that are not part of the social media phenom called Facebook, yet have access (and apparently time) to the internet, I will make things a little easier for you and offer an update – FROM RACHEL – on the news we recently received in St. Louis. So Rachel posted this lil’ ditty on her facebook page (again, it is easy to sign up and get an account and you can join the rest of the world on connecting with other people – just “friend request” Rachel or I). I figured it is better to hear it from her point of view.

————————————————————————————————

It has been 5 months since we found out about the tumor growing on my eye at a routine eye examine. It was diagnosed as Ocular Melanoma- which is very serious and can be fatal. Within weeks we had visited two specialist, had all types of scans and blood work done, and speed off to St. Louis to see one of the top specialist in the field of OM, J. William Harbour. We were hopeful for a treatment that would not involve the removal of the eye- and were pleased that I was a candidate for Radioactive Plaque Therapy. On August 14, 2009 we checked into Barnes-Jewish Hospital for the first surgery. Not exactly a vacation- as the plaque is about the size of a quarter and about the width of 4 quarters. Radioactive seeds were strategically placed and the plaque was sutured to the back of my eye ball directly over the area the tumor sits. Then we waited for 4 days for the second surgery to have it removed. We were very blessed to have Dr. Harbour and to be part of a research grant to do a biopsy and determine the aggressiveness of the tumor (which tells us the likeliness of wether it will metastasize/spread in the future).

11/16/09- we went for the 3 month follow up. We have been anxiously waiting for the results and had received indications that the prognosis was good. The pictures were a bit scary- it looked like it was morphing into a storm cloud. The tumor has shrunk 3 cm- which is great! The dark edges indicate scarring as it continues to die. His prognosis is that the tumor is DEAD- and the really great news is that it was on the low end of the scale and he does not think it has or will spread in the future. It has also shrunk a bit away from the optic nerve- which hopefully means less vision loss. The tumor will never fully disappear, but it will shrink in width and depth over time.

We were planning on having 3 month follow ups in St. Louis as well as multiple scans and tests to monitor any changes. However, because it is low/non-aggressive- we only have to go to St. Louis once a year for the next 5 years or so. I will get blood work every six months to watch my organs, specifically the liver, to catch anything should it arise. I will see my local opthamolgist throughout the year, but he should be able to do everything from here. I will go in for laser treatment next year to deliver one more punch to the tumor to ensure it is dead. (Sad note- I am no longer able to be an organ donor or give blood.)

At this phase it is considered remission- however the doctor said that all indications show that the radiation was effective and there is no living cancerous cells. The rule of thumb is 5 year for the official ALL CLEAR- but we are believing in the prognosis and that we will not have to deal with this thing or any metastasis EVER!

My eye is extremely dry- the cells that lubricate the eye have been damaged- so I should be buying stock in the eye drops I use because I have to use them a lot to keep it hydrated. I have had double vision due to some scarring on the muscles surrounding the eye- so we are praying that exercise and time will heal that too. We may have to visit a muscle specialist to get it corrected- but that is down the road. I do have vision loss- currently 20/60 or worse in that eye. There is nothing that can be done to correct it. Unfortunately, the damage done by the radiation is not fully known yet and may take a year or so for it to settle. We are still believing that there will be minimal vision changes and that it will continue to be healed and restored. The blind spot is permanent- which is annoying but better then eye removal, right?

We have so many people who have surrounded us with love and support. Terry’s parents have done more then we can ever thank them for to get us through this time. Our families have all sent prayers and love to us through this entire ordeal. Our life group stepped up and showed us their love and even frustrations- and really went through it with us. Friends and families from several churches have prayed and prayed- reminding us that we are one big family. And old friends and new friends alike have sent notes of encouragements. Even strangers have touched our lives in ways we cannot repay.

We are truly blessed by the news and ask for continued prayers that what God has started he will bring to completion. It is very easy to get confused, frustrated, and angry. And if you ever “research” something like this (which I do not recommend)- you will get the most conflicting and negative information, that it is immobilizing. But we continue to move forward and believe it was God who brought this to light at this time.

Thanks again for your love and support. You will never know how much it means to us and how it has brought us through this uncertain time. We have gained so much perspective on what is important and pray that we continue to live for today and to serve others.

AND a big thank you from me to Terry. You are the best husband and have always been an encouragement and rock. I am inspired by your simple faith and unconditional support. I love you and can’t wait for the next adventure.

First trip to STL in July 09.
Second trip in August- night before surgery.
Shiner- after the second surgery to remove the plaque. First time to take the eye patch off in a week.
Third trip in November- night before follow-up appointment.
After 3rd trip- good news!
The doc hooked us up!
Lots of bottles and tubes of eye drops & gel “to try”.
CANCER SUCKS!
Since June- Owen has gone to the Y a hundred times, swam/fished @ Table Rock, started doing his business in the potty, turned 3, seen Ice Age 3 & the Wild Things, started preschool, gone to stables, got pumpkins, dressed as a dragon & fries for Halloween (not at the same time), started a long Christmas list, etc. etc.

update on Rachel

We definitely appreciate your thoughts and prayers for us today. The countless number of emails, facebook responses, texts, etc. has been overwhelming and have been much needed support for us.

Today was a good day considering the circumstances – and we feel much better about treatment and the future then we ever have since the diagnosis in June. The doctor we met with today (Dr.  Harbour) is most likely the expert in dealing with this type of cancer and has developed research and clinical studies that are being used worldwide. He helped us understand the severity of the tumor and also has given us more insight on what is going on in Rachel’s eye. The tumor is large – about half an inch (remember it is on the eye) and is literally sitting on the top of the optic nerve. This is where the major problem lies in determining if any type of radiation treatment will be able to remove the tumor.

Dr. Harbour noticed that Rachel’s body has actually been fighting the cancer and building an immunity against it which was unique int his situation. Because of this, this tells us that this has been a problem that has developed over time and her right eye has been compensating for the vision loss in the left eye.

The doctor believes that a radiation plaque therapy will kill most of the tumor (picture for those that want to see – but it is gross) and what it doesn’t get can possibly be eliminated through laser radiation (because of the size of the tumor, a laser would destroy the eye if that was the sole treatment). This surgery will take place in two weeks in St. Louis. The surgery will start on a Friday and she will have to have a gold plate inserted into her eye with radiation and it will remain on her eye for 4 days. After the weekend, the plate will be removed and she will be released to come back home. During the surgery, the doctor will biopsy the tumor and conduct some very important gene research. This will be able to help us know if the tumor has an aggressive behavior to it where it will most likely spread, or if the tumor will not have a tendency to spread.

If she receives a clean bill of health, there will still need to be some follow-up appointments made. 3-month, 6-month, and 1 year appointments will be made and then we will determine how often testing needs to be done. If there is a chance that it may spread, she will have to return on a more frequent basis and have more testing done to monitor it.

After surgery, Rachel will most likely have impaired vision in that eye, however, since her right eye has been compensating already, there may be a chance that it is never really noticed.

We are obviously thrilled that her eye will be saved, and now the prayers will return to focusing on making sure that the cancer does not spread in her body.

Thanks again for your support – we will keep you updated on this journey.

Tagged , , , ,

Where I’ve Been

So my blog has been pretty quiet lately. There have been a lot of things going on in my life and I really haven’t made much time to take advantage of this outlet. Recently I have had a lot of people concerned for my family and for those of you that have asked or wanted more details, I thought this would be the best venue for it. I won’t promise to post regular updates, but I will try.

THE STORY
Several weeks ago Rachel was nearing the end of her employment with her job and had decided to make an appointment with the eye doctor to basically “use the benefit she had”. At the check-up the doctor noticed something unusual and had originally thought they discovered a detached retina. She was asked to immediately go to the specialist across town and after several tests, he discovered that it was not a detached retina, but a mass on her eye.

Later that week (while celebrating our anniversary and her ending her employment) we had several tests ran and met with many doctors. At a second visit to the eye specialist, Rachel was diagnosed with ocular melanoma – in other words, cancer on the eye. We have discovered that the tumor is quite large (for its kind) and finding that there are not many options of treatment to really eliminate the tumor. There are a few that might work – some type of radiation beam, plaque therapy (where a gold plate with radioactive material is inserted behind her eye for a localized radiation treatment) or total eye removal. Because this form of cancer is quite rare and fatal, the doctors are also very concerned that it may have spread.

Those that we have spoken with have said that the tests we have initially had are not 100% clear if the cancer has spread or not.  Because it is near the nerve and the walls of the eye socket – there is still a strong chance that it has microscopically spread to the rest of her body. There is also a chance that even after the tumor or eye has been removed the cancer can still spread. So regardless of the treatment, Rachel will have to go for continued PET scans to catch anything going forward.

We will be traveling to St. Louis this week to have an expert in the field look at her eye and determine what kind of treatment we will need to proceed with. Needless to say- this has been quite overwhelming for us. This has challenged my faith in some areas, but it is also challenging me seek God in greater ways.

We definitely covet your prayers during this time, and we will keep you updated as best as we can. We are blessed to have good friends and thank you to those that have expressed concern and have already begun to pray.

| terry and rachel |

We have fun together.

We have fun together.

Tagged , , , ,

Owen’s REAL intervention …

A couple of weeks ago, I posted a fun teaser video for the Dirty Little Secrets series we are currently in at church. We have had some great response to it and have heard of a ton of people passing the video around. That’s cool. Well, tonight, was Owen’s real “intervention”. He started at a new sitter this week and has pretty much kicked the binkie habit during the nap, so he only asked for it at night. We thought that this weekend was the best time to have him kick the habit altogether, but we wanted to make it fun for him.

Continue reading

Our next BIG purchase

Rachel and I have been looking really hard at our budget lately and we have decided that we think it is time for us to possibly purchase a new house. We are kind of looking at our options – square footage and really making sure that it all fits within the price we think we could afford. We aren’t working with a realtor – yet – but with all of the home buying shows on TV, we think we have a pretty good direction of what we are looking at.
Continue reading