Back at MSK

We had a nice Thanksgiving here at home with Bob, Annette, and Gregg and we've been enjoying the abundance of leftovers since.

Unfortunately, starting mid-week we noticed some subtle changes in Robb's symptoms. His balance worsened and he found it hard to communicate specific words at times. Then Saturday morning he complained that his right side, which is typically his strong side, felt weak. He continued to decline relative to where he was about a week ago, so we took him in to be evaluated last night.

They ran a CT scan which confirmed significant edema, or swelling in the brain. He was admitted overnight and an MRI was done this morning. The good news is that the tumor does not show progression and is seemingly not to blame for the current change in symptoms. The cumulative effect of radiation has caused the swelling and his dosage of steroids was not countering that well enough. He has been put on a much increased level of steroids since last night and will stay in the hospital as we await some improvement. His right side remains extremely weak and he is often confused or has difficulty communicating clearly.

The doctors assure me that this swelling is to be expected from the radiation. They will not start any new treatments, such as more chemo, until 4 weeks following the end of radiation (which is another 2 weeks from now). At that point, they will take another MRI to establish a new baseline for the tumor and his further treatment plan.

We are disappointed about Robb being back at MSK and are hoping for a short stay. Beteena and Gregg are here alternating helping me by staying with Robb and/or taking care of the kids. I hope to post more positive news soon.

Beaver and Friends' Thanksgiving

No one here is missing the daily trips to MSK. Robb's been able to get a lot of rest, which is necessary as the radiation continues to take its toll on his tiredness.

Our good friend, Bill Beaver, from San Diego surprised Robb with a visit late last week. They enjoyed catching up, watching movies, and eating some of their favorite NYC food together.

We also had Friends' Thanksgiving this weekend. Typically, this is a chance to get away from the city, cook a traditional Thanksgiving meal, and reconnect with our friends the weekend before the actual holiday. This was the 10th year for this tradition (Robb and I have been part of the last 6). This year, everyone decided to stay in town to ensure our family could participate. The group continues to expand and included 11 adults and 6 little kids at our place. It was chaotic but, as always, fun!

Radiation is done!

Robb's last day of radiation went smoothly. He was seen quickly for treatment and we were able to meet with his radiation oncologist, Dr Beal, to discuss some next steps. He will be slowly tapered off his current steroid dose which has both good and bad potential side effects. He is likely to continue to experience tiredness from the accumulated radiation but his muscles should feel less weak. It also turns out that his last day of chemo was yesterday - so in all he had 29 radiation treatments and 39 days with chemo.

We were encouraged by our discussion with the doctor in that she mentioned a study or two that had been ongoing at the hospital using Avastin, a drug we've heard a lot of promising things about with regard to glioblastomas. We are anxious to have further talks with Robb's primary oncologist in a few weeks about the options that may be available to him.

Bob, Robb, and I celebrated the last treatment with a nice lunch at The Spotted Pig, one of Robb's favorite spots.

He should be kept somewhat busy the next few weeks with his various therapists, but it will also be nice for him to be able to watch a movie or read a little in some of the spare time he should have now.

Thanks again to everyone who is sending positive thoughts, prayers, messages, cards, etc. Even if not acknowledged or responded to personally, they are all very appreciated.

Time Flies!

Robb has only 2 more days of radiation & chemo! Needless to say, we are all very excited to have some time off from the daily ambulette trips to the hospital and to be done with this stage of treatment. The 6 weeks seemed so daunting at first yet now it's hard to believe the end is already here. There is then a 3 1/2 week period where Robb will simply continue his therapies until he has his MRI and discussion with the doctors about the next steps in mid-December.

My mom, aunt, and uncle visited for a long weekend from Ohio. Now Robb's dad is back for the next couple of weeks. We are very lucky to have our families be able to come stay and help us, essentially continually through this period.

Also, Beck had his 1st haircut on Saturday - he handled it well and looks like a big kid now!

Therapy

Things have been going well the past few days. Robb continues to see the physical and occupational therapists and they are pleased with the progress he is making. He still must use either the wheelchair or walker with assistance to get around, but his coordination is improving. He is fortunate to have started out in very good shape and having a strong core has been crucial in making the improvements they've noticed already. He will begin seeing a speech therapist tomorrow, though Beteena and I notice that he is speaking much better than even a few days ago.

We had a great weekend with a visit from my brother, Brian, from Ohio. It'd been many years since his last trip to NYC so we squeezed in a few touristy sights while also ensuring enough time for him to visit with all of us.

The new wheelchair is giving us more confidence about getting Robb outside and to eat out at restaurants (space permitting). Robb even got to go to Corner Bistro for one of his favorite burgers on Saturday.

I promised to post a picture of Robb with hair and I had to go back farther than I thought I would. Here is a picture of him in high school on the swim team.
He has very fond memories of his high school teammates and families. And I've appreciated all of those who have reached out to me and our family in the past month or so.
He didn't swim after freshman year in college (blame DU and me I guess) but he had recently picked it back up and had been doing it on a regular basis. He was even looking into entering a triathlon soon.

Trailer Park

Robb completed his 21st radiation treatment today & has just 8 more to go - his final day is Tuesday the 18th!

Trailer Park is possibly Robb's favorite restaurant. Seems strange, I'm sure, to those of you familiar with NYC cuisine, but during business school with no income it became a great place for tasty (and strong) margaritas and good old comfort food. It also was a place we began taking Laurel for family dinners as it was always loud enough to drown out any fits of hers & the ambiance was entertainment enough. So tonight a bunch of business school friends organized a meet up back at TP. It was Big Mike's birthday & nearly everyone was there - Susan, Stephen & Maren from Houston, Jen & Jeff from Hong Kong, Steph & Chris, Jen B., and Ben from Boston.

Robb was really tired, yet overjoyed to be there. He couldn't have a taste of his favorite margarita, and we couldn't stay too long, but he told me when he got home that it felt like everyone had thrown him a birthday party - so thank you to all of our NYU friends for making him feel so special.

I am also reminded that it is the one-year anniversary of our 4-year old niece's diagnosis with cancer (Ewing's Sarcoma). We are so relieved that she is now in remission and we certainly look to the strength and courage Alex has shown throughout her battle as a model for us in Robb's. We can't wait until we too can celebrate a year out from his diagnosis and also report ongoing positive news. Alex, you are amazing!

2am Wakeup

Things had been going fine for Robb the past few days. We saw his primary oncologist, Dr Mellinghoff, on Friday and he was pleased with the fact that Robb seemed to have stabilized. As long as things remain stable, we do not see him again until early December when Robb will also have his followup MRI done.

There have been several sessions with the physical and occupational therapists and we continue to outfit the house for the appropriate gear to make sure Robb is comfortable and safe. The latest is a new wheelchair better sized for him and with a cushion for more comfort - he spends many hours a day in it. Both therapists feel that they are seeing improvement in his balance and walking since they first saw him earlier last week. This is good to hear - seeing him everyday I often do not notice modest improvement myself.

Unfortunately, we had quite a rude awakening last night. Robb is very groggy when he's sleeping and when he wakes in the middle of the night he often isn't clear on where he is. Normally I wake with him and am able to help him to the bathroom. Last night at 2am though, Beteena & I woke to a loud bang which was Robb falling to the floor from the bed. We are not sure whether he was simply sitting and fell or if he tried to stand on his own. He banged his head pretty well and got a small cut under his chin. Of course once we were assured that he was generally fine, we worried that this might cause the doctors to re-admit him to the hospital once they learned of what had happened.

Luckily, this morning, the doctors examined him and determined that the bumps on his forehead were superficial and that since he didn't lose consciousness, he didn't need to be scanned for brain injury. We worked with the occupational therapist more today on setting up the bed to better alert me to his movement in the middle of the night & we hope that this setup will prevent future mishaps. We all, particularly Robb, breathed a big sigh of relief that he is able to remain at home.

We had a great weekend by the way. We enjoyed going out along the river with the kids a couple times on Saturday. Then on Sunday we had quite a few out of town visitors from Philly and Hong Kong - it was great catching up with everyone.

I'm looking into a better wheelchair to travel along the sidewalks of NYC and hope to get ahold of one tomorrow - this should allow us to better get out of the apartment, either to meet friends at Trailer Park or be with the kids at their favorite playgrounds.

Halloween

Laurel as Statue of Liberty:Beck as Army Trooper:
Halloween is one of Robb's favorite holidays so it was disappointing not to be able to include him in the most of the festivities of the night. He requires the wheelchair to get around and getting to the area of the trick or treating in Chelsea and the pre-party was a daunting task that I couldn't figure out how to manage. Between the darkness and horrendous NYC sidewalks it would've been too much. So Robb and Beteena stayed home and passed out candy to the kids in our building. Laurel, Beck & I went to the Rothman's and enjoyed seeing several of Laurel's classmates and their families dressed up. We then attempted to trick or treat but with only marginal success due to the crowds (not good for the stroller) and many "scary" costumes which Laurel seemed to see at every turn. Laurel relished the attention she got though as Lady Liberty.

It's hard to do these things without Robb, but I know it's important for the kids, especially Laurel, to continue to do so. We all look forward to when he's better able to get around and we can all participate as a family.