Monday, March 23rd, 2009
Stable but “plumper”.
We haven’t got the official radiologist report yet but were able to look at the scans with our doctor. He had already taken a look with the radiologist before meeting with us. The measurements will probably be very similar but it looks like they will probably come back a millimeter bigger. The key word our doctor used, however, was that he feels the tumor looks plumper. We should get the official report in a day or two.
Below is a link to a website from a Canadian hospital which has an excellent summary of Benny’s diagnosis, DIPG, and has two comparison MRI images which show why this tumor is “not good”, (I’ve got lots of other words but this will do). Scroll your mouse over the MRI images, Benny’s pons look exactly like the MRI on the right. As you can see when it is already large extra millimeters can significantly impact some really important functions of the body.
DIPG – The Hospital for Sick Children, Toronto, Canada
So the tumor is definitely not shrinking anymore and if it’s getting plumper, then as we suspected, it is time to start Benny on a new treatment. I’m not as devastated as I thought I would be which is a little shocking to me but I think I knew that this was probably coming and it’s a lot easier to take when Benny is actually doing so well. We have been incredibly lucky to have had such a healthy boy all year. He really has no symptoms, he compensates amazingly well with his vision. We do have a few options for treatment, nothing is a home run but at least we have options and hopefully since Benny is so healthy and strong he will do well with the treatments. Our doctor was impressed with Benny when he examined him, he is not seeing any symptoms either. During the exam Benny was telling him things he likes to eat and drink and then he blurted out that he doesn’t like to drink beer, I guess his Daddy has tried his own clinical trial on him!
We will make our decision on our next steps within two weeks. We feel comfortable taking our time because there are no symptoms and it is appears to be a slow growing tumor. Our doctor is heading to Washington, DC next week for some meetings and he will be seeing some of the other doctors in the US who frequently deal with this tumor. He’s going to show them Benny’s scans to get their opinion too on tumor progression and hopefully also discuss some treatment options. After he gets back then we’ll be in touch to hear his recommendations and make some decisions. Our number one priority is Benny’s quality of life and so we’ll select a treatment that hopefully won’t impact his daily activities too much.
When Benny was first diagnosed I felt like we were on a runaway train in a fog. It was so much to absorb and all we wanted to do was get going with treatment. Once we stepped off that train with some knowledge and understood that we had just given him a lifetime dose of radiation before his third birthday it was a little shocking, but we wouldn’t have done anything differently. Since then it has been like standing at the edge of a cliff, sometimes you think you see some symptoms and it is like looking over the edge preparing for a free fall and other times we’ve just turned our back. I always thought when this day would come it would be a free fall but I think we actually just took a little step down to a ledge and we are going to hang here for a while and hopefully never see what is at the bottom.
We are still happy and hopeful,
Love Lisa.
Monday, March 16th, 2009
We all had a great time at the St Baldricks event at the Brat Stop in Kenosha, Wisconsin on Saturday. All the volunteers did an amazing job, heads were being constantly shaved from 4pm to 9pm. I don't know how many heads or how much they raised this year but last year they raised $80k which is amazing. The St. Baldricks foundation uses the funds it raises for supporting cancer research which is what we really need.
Benny's buddy Jackson, who is 7 years old, decided halfway though the night to have his head shaved. He raised $80 on the spot and looks so cute. He was our star of the night and I think a big hit at school today too. The best part is he told his mom that he learned today that even though he looks different he still is the same person just like the kids with cancer, he told his friends that too. Next year he's planning on raising more money and getting his friends to join in. We are so proud of you Jackson. Thanks also to the Moore's, Bail's, Smith's and Joachim's for joining us.
I've posted photos from the night on Flickr. You can click on this link to view them.
St Baldricks Photos
Happy St. Patricks Day tomorrow,
Love Lisa.
Wednesday, March 11th, 2009
Hi everyone,
Sorry again for the long break between updates. I’ve learnt a lot this past year, one thing I knew for sure before all this happened was I was not a diary person and one thing I think we can all probably agree on now is that nothing has changed. Although at times I think our life is pretty ridiculous, really, it’s just pretty normal, I don’t want to write to myself about it so I can’t imagine anyone else wanting to hear about it. But I’m glad I have this journal to document a little of what is happening and it’s great to know how much support we have.
Benny is continuing to do really well, some days it seems like a joke to me that he actually has cancer, he’s running around destroying everything in his path, terrorizing his sisters, and ruling our world like any other 3 year old boy. But I also do have to admit that there are some very subtle changes happening in him which make me not so confident for the next MRI on March 23rd. Today is his 12 month anniversary since he completed radiation so statistically we are pushing our luck for the tumor to remain stable. We have been concerned before and he’s been OK, and we have to wonder how much is to do with the statistics and just expecting our number to come up soon, so we just remain hopeful and carry on with our normal lives until MRI day. We are also updating our research on what our next options are so we can make some decisions if we need to after the 23rd.
Benny had a check up with the ophthalmologist last week and I was shocked to discover how much vision he has lost in his left eye, the one that crosses in. We need to patch his good eye for a minimum of 2 hours a day to strengthen the left eye or eventually the brain will just turn it off and that appears to be what is happening with Benny. She said up until 5 years old you have a good opportunity to correct it but it has been almost impossible to get him to keep the patch on, he’ll rip it off or start peeking and bribing only works the first few times. Ultimately we have to pick our battles, happiness has been our number one drug for him within reason so we’ll just keep trying. It makes me very sad but I also have to keep it in perspective. It is really amazing how children compensate, we really had no idea he is operating mostly with one eye, when the patch is on he has a really hard time seeing anything including Dora on our 50” TV a couple of feet away.
On a more exciting note there are some fun fundraising events for different organizations we are getting involved in this spring. The first event coming up is this Saturday, sorry for the short notice, it is for St. Baldricks and is being organized by a wonderful group of people including Jean our Harley riding dental hygienist from Dr Durrett’s office. This is a family friendly event being held at the Brat Stop in Kenosha on Saturday March 14th from 4pm. St. Baldrick’s is the world’s largest volunteer-driven fundraising program for childhood cancer. In nine years, events have taken place in 18 countries and 48 US states, raising over $50 million, and shaving more than 72,000 heads. Thousands of volunteers shave their heads in solidarity of children with cancer, while requesting donations of support from friends and family. Don’t worry, you don’t have to shave your head to join in the fun, there will be other activities as well as a silent auction, come and celebrate St Patrick’s Day a little early with us. Benny is one of the children being honored at this event, we are very grateful to be included.
I’ll post about some other upcoming events very soon as well as update you on some past events that were held on our behalf to raise money for Benny’s World. We have some big belated thank you’s to make.
Keep happy,
Lisa.
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