Heading back

After another impromptu meeting with the oncologist on Friday, they told us that they want Joe to come back for a few more tests on Tuesday. These tests in a best-case senario would show that it is pseudoprogression, but they are just as likely to come back inconclusive. Hopefully this will give them enough information to make a better diagnosis. We will meet with our doctors again sometime after the tumor board meeting on Wednesday.

So we'll be going back to Memphis on Monday but we don't know how long they want us to stay. Thanks for all your prayers and messages.

Progression vs. Pseudoprogression

Well, today's MRI showed that something was there. The MRI from March showed a shocking lack of tumor, but this one showed something in the tumor bed that was not there before. It is about 1cm x1cm and the radiologist called it a progression of his original tumor (meaning that she thinks it's growing again). Our oncologists, however, were not so sure that this was true progression but rather it could be something they call pseudoprogression. Pseudoprogression looks and acts like a progressing tumor, but it is actually due to necrosis (death of cells) and other inflammation that is attributed to radiation and chemo. Pseudoprogression would remain stable in size and could eventually go away. It is often seen around this time after radiation, and the fact that the last MRI was so clean makes them suspect that this is pseudo even more. Joseph does not have any signs or symptoms due to the mass that is there, but this does not help in the diagnosis either way because pseudoprogressions can also cause symptoms.

So, our team is going to the tumor board next Wednesday (the group of radiologists, neurosurgeons, and oncologists) to discuss his case. It sounds weird and non-scientific, but they are going to come up with a consensus on whether to call this true progression or not. So we have to wait until next week to see what the other opinions are. Joe will continue to take his current meds until it is officially a true progression.

Obviously, we are rooting hard for a pseudoprogression diagnosis. Unfortunately the only way to know for sure is another biopsy, but that has not been discussed yet and I doubt they would recommend it. My best guess as to what the course of action will be is that they will have him continue Tarceva and then come back in 4 weeks for another MRI, but I'm guessing.

What does this mean for Joe? If it is pseudo, then he will continue Tarceva and we'll go on like we didn't go through this horrible day. If it is true progression then he will stop this trial and we will move on to a new one. We have some other trials already in mind if this should come up.

So we're in limbo for the next week and probably for the next month. Please pray for the meeting next week, that the diagnosis would be obvious to everyone. Please pray for strength and peace for us as we are feeling frustrated, angry, and helpless. And continue to pray for healing for Joseph.

After Joe had his port accessed (it took five people to hold him down) he was great and did not complain or cry too much. He actually hugged all his doctors and played a lot with Aunt Jennifer today while we were talking to the doctors. We even had time in today's schedule for a visit to the Children's Museum with Jen, WK, and her Nana. We will be coming home tomorrow after PT/OT appointments. Thanks for all your prayers.

MRI this Thursday

We had a great Memorial Day weekend. Joseph's friend, we'll call him Yogi, and our friends from Atlanta came up and we had lots of playing and fun. Joseph was so sad they had to go back.

We leave tomorrow for Memphis for the three month MRI. We have three days of scheduled tests and meetings, and Joe will have his port accessed tomorrow night. This will be the first time they've left the needle in overnight since radiation, so we are not anticipating a good night's sleep. He always freaks out with any blood draw or IV, so please pray for him to be strong and calm. The MRI will be first thing Thursday so we'll know the official results by the end of the day.

We are emotional and apprehensive about this MRI. He isn't showing any signs or symptoms of regrowth, but there could still be some growth. I guess this is how every MRI is going to be for a while. Please continue to pray for him and for us.

Also, if you've been following the other three year old boy with GBM in the links section, he is not doing well and is not expected to live much longer. Please pray for him and for the family.

Home again!

At Sea World





The train at Give Kids the World

Carousel at GKTW
Grandma came from St. Pete to visit on her birthday

We had a wonderful trip to Disney World. We were joined by Nana, Grandad, David, Mimi and Big Daddy for the first few days, then we were on our own the last half of the trip. We stayed in a great little "village" called Give Kids the World. It was basically a mini Disney with everything from a carousel to putt-putt golf all included. We stayed in a 2 bedroom villa and they had all kinds of events planned, including meeting Disney characters and parties and train rides. It was really an amazing place, run mostly on a huge team of volunteers. At meal times, at least 3 people would come up and ask if you needed more food, drinks, or help in any way.

We got to go to Magic Kingdom, Sea World, Universal Studios and Hollywood Studios. I think our favorite was Sea World b/c there was a huge fountain play area and we got to feed and pet dolphins. It was just a really interesting park and they had so much for toddlers to enjoy.

At first, Joseph was really scared of anyone dressed up, but after meeting Mickey Mouse he overcame that fear and then loved meeting Lightning and Mater, Woody and Buzz Lightyear, Barney and friends, Pinocchio, and even a special visit with Cinderella in her "private chamber." Holly was a little overwhelmed with all the activity and heat, so she and I rested for a little while at a special room in Disney for Wish families. They had couches, toys, Disney movies and drinks available to get refreshed. She loved spending time in there (as did I). We decided we could never go back to Disney as just regular people b/c we got such special treatment this time it would be hard to go back. We got to go to the front of every line and even got free parking and stroller rentals.

Make-A-Wish really went above and beyond, providing airline tickets, park tickets, spending money, and a car rental. We are so grateful for this amazing memory. We had so much fun!

Off to Disney

We're leaving tomorrow for Joseph's Make-a-Wish trip to Disney World and the kids are very excited. Joseph keeps saying he's going to see Mickey Mouse even though I don't think he has ever watched a Mickey cartoon. Holly has been asking for days when we were going on an airplane. So we'll be back next Friday with lots of pictures and videos.

Here are a few pictures from the past weekend when cousin WK came to keep us company during mommmy's birthday trip. My sister bought a bunch of dress up clothes at a garage sale and they were all princess costumes, but they told Joseph that his Snow White top was a king's costume and called him Sir White. Of course they didn't tell Daddy that he was wearing princess clothes until it was too late. But we got some good pics from it.

Missing Mommy

Gillian is away with her mom and sisters for a birthday beach trip and we're missing her. The house has turned into the lord of the flies, except with less order. We're surviving somehow.

Joseph got a huge package in the mail yesterday and he was so excited to see a brand new Lightning McQueen power wheels car. Thanks so much to the Shims who sent it to us. He hasn't been that excited in a long time.

a message for mommy:


The new car

Holly's Risky Business