The ambulette service is working out fine. They are now coming on time but then the hospital had its own issues, including a 2 1/2 hour wait yesterday to repair the radiation machine! Today was the best day yet, so we hope it will continue as such. The inital evaluations have been done by 3 of his 4 assigned in-home care providers and a regular schedule should be established by next week.

Robb is feeling relatively well. He's had very few effects from the radiation & chemo so far. His tiredness has increased slightly which was expected. He has also started to lose hair in patches on his head (normally one wouldn't notice such a change on Robb but I haven't shaved it so he now has over 5 weeks of hair growth on the sides).

We've had some fun visitors in the past few days - Danford (who's running the marathon Sunday), Pete (a long-time friend who flew in from Boston), a playdate with Jessi and 1 year-old Fay (Beck has not yet learned to be gentle - sorry, Fay!), and Jason (I think Laurel has a crush on you). but it's also getting more difficult for Robb to stay up late enough to see anyone after normal work hours.

Beteena has been great to travel along with Robb each day to his treatments, which has given me the chance to get to work or take care of kid-related responsbilities. We are looking forward to the weekend at home with no appointments.

Ambulette

I really hadn't intended to update this site everyday, but right now things seem to change day-to-day, so perhaps it's worthwhile to keep people posted.

One point of clarification. Robb goes to MSK every morning during the week for radiation, but the chemo is administered via pills everyday at night by me. It's really quite easy and rather perplexing to me that that’s how it’s done, but medicine these days is amazing. He has not yet shown any real side effects from either. Though I do think he is much more tired tonight than usual and it's likely a result of the radiation whose effects buildup over time.

We managed to make it to Robb's first outpatient radiation appointment, despite the ambulette's attempt to make us miss it. The kinks should be worked out by tomorrow and the whole process should take no more than 2 hours with transit time considered. It's scheduled first thing in the am which gives us the afternoon and evening at home to relax, have additional in-home therapy, play with Beck, or visit with friends.

Speaking of friends, we were happy to have the Berty's from Pittsburgh in for a visit this afternoon and Demian (from far off CT) later on as well.

I had planned to post a photo of Robb from time to time. And I originally thought I would stick with recent photos to show the kids, etc. But after a few people have been to our apartment and have seen our wedding pic where Robb still had hair, I decided to post, at some point, other pictures that show him in the earlier years. In the meantime, here is a photo from two months ago, and the story Laurel decided she wanted to tell.

San Diego: August 2008

A story from Laurel:
"I went surfing in San Diego and there was another friend there surfing. Bill & Natalie were surfing but the waves were too big. So Natalie stayed with us. Then Laurel and Natalie built a sand castle. So Dad was surfing with Beaver. And then Natalie and me wanted to go over to where the crabs were but I was too scared. We had to go when it was raining back where we were, to Beaver & Natalie's house. "

That reminds me. Many of who know him well know that he is not one to shy away from his feelings. That made it a little more difficult as things progressed in the past month that he did not really show emotion, even though he seemed to realize the seriousness of things. Well, for the better, I guess, that's changed. Our trip to the park yesterday, or learning of a friend running in the NYC marathon in his honor, or getting a Steelers jersey as a gift brought tears to his eyes. This is actually nice for me to see, and it should make you DUs proud that he’s still got it!

Weekend at Home

At last, we had a whole weekend at home and obviously Robb is much happier. We even got outside yesterday to the water park near our place to watch the kids play, and the fresh air did him some good.

This morning he starts radiation therapy as an outpatient and I'm hoping the ambulette service works out! He will then have physical, occupational and speech therapies along with an in-home nurse setup a few times each week. We should learn more today about the timing and structure of all that.

Bob has gone back to Pittsburgh and Robb's mom, Beteena, has returned to NYC for the next 2+ weeks.

Home Sweet Home

It's actually quite surprising that they didn't just kick us out first thing this morning as Robb was extremely impatient about getting released. He had his radiation therapy early & then the doctors and nurses had to make sure we had all of the necessary meds, equipment for the apartment, and discharge paperwork in order. We probably left the hospital around 12:30 so he had the whole afternoon and evening at home.

An in-home nurse will come by tomorrow to assess his needs and may prescribe ongoing in-home care. MSK is also arranging for his occupational and physical therapy to continue at home rather than having to get back and forth to yet more appointments.

He was very happy to see Laurel & Beck and to sit around the table with them at lunch and dinner. He and Laurel even watched some Charlie Brown together. Laurel has taken to making sure she is helping and advising Robb, whether it be to give him his medicine or to remind him to sit still & not to try to get up on his own. She has lots of questions and we're doing our best to be honest with our answers.

It is a relief to have him home. The commute was very taxing on me and Bob, so eliminating that alone will alleviate much of our day-to-day stress. Additionally, I think it'll do a world of good for his mental/emotional state which is probably just as important as his physical shape at this point.

Going home

Good news! They are allowing Robb to go home tomorrow and then continue his radiation for the next 4 weeks as an outpatient. In-home physical therapy will likely be set up. Also, the hospital has arranged an ambulette service to pick Robb up everyday, transport him to get treatment, then bring him home again - the best part is that they have gotten the cost of the service to be covered by a Brain Tumor Fund here at MSK since transportation is not covered by insurance.

We're all very happy about this, especially Robb. He's so relieved to be going home to his own bed and to be able to see the kids everyday.

The doctors remain concerned about Robb's instability on his feet so have indicated that if things worsen or if there are any falling incidents that they'd have to bring him back as an inpatient. Robb isn't the best listener these days, but I think the threat of being re-admitted will be sufficient to ensure his compliance at home.

Wheels are in Motion

Robb's persistence is starting to pay off. The doctors are talking about him getting to go home for the weekend. They are looking into transportation options for getting him home Friday & returning Monday am. Of course he's hoping that it will be a permanent change but he'll likely be re-admitted for the week to get his radiation and physical therapy inpatient. We should know better in the next day or so.

Thanks

I am absolutely overwhelmed right now with all of the love and support towards Robb, me, and our kids. I've known for a long time that we both came from strong, supportive families, and they're certainly proving themselves as such now. But the emails, calls, visits (from across the globe even), food, and gifts from all of our friends are just so touching and mean so much to me and to Robb. We have lots of groups of friends and they each define such distinct periods of our lives, either as a couple or separately, that it's comforting to know those ties haven't faded over time.

I've been wanting to specifically thank all of the visitors who've visited us so far in the hospital. Each time I tell Robb someone is coming to visit, he says (no matter who it is) that he's not in the mood. Yet, every time he is happy to see them and really enjoys the company - in addition to lifting his spirits, it helps to pass the time which seems extra slow when you're laying in bed most of the day, and I enjoy it as well.

Robb's dad, Bob, is here on his 2nd tour of duty and fortunately Robb is allowing him to take my place some nights sleeping over at the hospital. Today I was able to spend much of my day tending to the kids (Laurel was sent home from school with a fever but is doing fine) and household duties, and I'm appreciative to have that time and to know Robb still feels safe.

Tomorrow, we're going to look into the possibility of getting Robb home for at least the weekend since he won't be getting radiation anyway. It would be so nice for him & the kids (and of course me & Bob) if that was to happen. The physical therapists are open to the idea so now we need to see if the hospital is as well.

Background, Part III

As I try to catch people up on where we are, I realize I've left more out than I first thought. So here's more background.

One point the doctors made early on in this process was that Robb has likely had this tumor for quite some time. Given its size and diffuse nature it seems that it has been there for a while and that his brain has become accustomed to its presence - which is a good thing. In fact, we went back to look at pictures and can identify what seems like some facial asymmetry since maybe the late 90s. And here I've been giving him a hard time for smiling crooked for all these years . . . . The concern at this point of course is that things have begun to change and the tumor has become more aggressive causing him to be symptomatic. This is not atypical of astrocytomas and why they are proceeding quickly.

The radiation given every weekday and the Temodar chemo given every day are expected to last for a total of 6 weeks. Then he will be given 4 weeks off, at the end of which a new MRI will be taken. The hope is by that point the tumor will show some noticeable shrinkage. If by chance it doesn’t, they would wait another 2 weeks to allow dead cells a chance to disappear and take a 2^nd MRI. From that, they will best be able to determine how well the treatment has worked.

Following that break period, they have discussed the possibility of starting additional rounds of chemo which would entail 5 days on then 23 days off and continue in a 4-week cycle. But that is also the time when we should be able to better discuss other treatment options and drugs that are currently in clinical trials.

Update

First, I realize I didn't mention that the chemo drug is Temodar (or Temozolomide) which is the current standard for treating brain cancer.

Robb's getting 2 physical therapy sessions per day and seems to making a little progress. Unfortunately, the doctors continue to insinuate that his stay in the hospital could be for the entire treatment period (5 more weeks). Needless to say, no one is happy with that scenario, but it's best for him to be safe.

Right now Robb is the most polite & considerate patient to certain people here at the hospital. He is always asking the therapists or the nurses how they are and thanks them profusely for their help - they seem taken aback by this. Of course, he's raised his voice at the doctors a few times when they've told him he wasn't allowed to go home yet, but otherwise he's the king of kindness.

One day at a time.

Everyone asks how the kids & I are doing and we're ok. We had unfortunate timing in that our nanny of 4 years left to go back home to Costa Rica in early September and Robb planned on staying at home fulltime to take care of the kids. The few weeks he had with them on his own were great and he was especially enjoying quality time with Beck. Once we realized the severity of his illness, we were able to quickly hire a new nanny and she has worked out wonderfully so far. Laurel has lots of questions and concerns about Robb not being at home, but otherwise seems well. Certainly staying busy with school and keeping her routine helps with that. And Beck is just now 13 months so doesn't seem to be fazed yet by the recent changes. Laurel has been to visit Robb 3 times in the hospital and Beck went once. She is mildly fascinated by the experience and seeing nurses taking blood etc. She has also really enjoyed having her grandparents around so much.

Robb's family and mine have been with us everyday since the biopsy. Either helping to take care of the kids in the morning or nighttime or keeping me and Robb company at the hospital. I think we have worked out a schedule so someone will continue to be here indefinitely to help us out (thank goodness we moved to a bigger apartment earlier this year). I am forever grateful to have them and the help.

The help of our families and our friends has certainly made this easier on me. My work has been supportive though I'm trying to get into the office from time to time, more for my sake than their need for me. Robb prefers to have me with him at the hospital nearly all the time, but I've been able to balance that with being around for the kids too, particularly at bedtime if possible. One thing I'm missing now is the chance to workout occasionally, so perhaps once he's home again I can pick that back up.

Background, Part II

I promised myself I’d finish the history part of this blog tonight so I can then share it with everyone. So here goes . . . . (start from yesterday's post if this is your first time here)

Robb seemed to improve from the biopsy procedure each day. And we finally ventured outside on Tuesday night when he even walked on his own while pushing Beck in his stroller. Then that Thursday (Oct 2^nd) early in the morning, he vomited and complained of extreme pressure in his head. We went to the MSK Urgent Care Center where they ran a CT scan that confirmed he had fluid buildup on his brain, or hydrocephalus. They weren’t certain what was causing this – either swelling from the surgery or the tumor growing. He stayed in the hospital overnight & an MRI was taken which confirmed that tumor had grown quite a bit since a month prior and that was the cause of the pressure & fluid buildup. They performed an emergency surgery Friday night which implanted a shunt into his head (in the same incision as the biopsy), which drains the excess fluid from his brain into his abdomen via a tube running right under his skin. This is a permanent fix and is not expected to be removed, though it is relatively inconspicuous.

During the surgery, Robb’s primary oncologist, Dr. Mellinghoff, informed his mom and me of the diagnosis from the week earlier biopsy. While the biopsy was done of a less aggressive portion of tumor due to its location, even that so-called “less aggressive” segment showed malignancy, or Grade III cells. So the diagnosis is that of an anaplastic astrocytoma, but they are also proceeding with the presumptive notion that there is Grade IV present. The reason for this is the fact that the biopsy was done of a less aggressive portion, his increased symptoms, and that the tumor had grown quite a bit in just a month’s time. Therefore, they wanted to accelerate treatment and begin radiation as soon as possible instead of waiting the standard 3-4 week timeframe. The prognosis for this type of tumor has traditionally been quite grim, but there seem to be a number of interesting drugs being tested right now on glioblastomas and anaplastic astrocytomas. We need to get through the initial radiation and chemo treatments in order for Robb to be eligible to try those drugs. We are lucky that our doctor is open to these discussions and will work with us to find the best option for Robb at that time, whether it’s at MSK, Harvard/Dana Farber, Duke, Stanford, or wherever.

The change in pressure from the success of the shunt created some initial challenges for Robb. He struggled with hallucinations, and stability issues. The hallucinations seemed to diminish and he was released to go home on Monday October 6^th. Because the location of MSK is not convenient to our apartment in the West Village we requested conducting treatment at St Vincent’s near us. The doctors at MSK were receptive and set up an appointment for us on Wednesday there. After meeting with St Vincent’s on Wednesday and again on Thursday we learned they couldn’t begin treatment until Monday the 20^th. Meanwhile, Robb was not improving and in fact fell Thursday night when he tried to stand without assistance. Dr. Mellinghoff immediately asked us back to MSK on Friday the 10^th to being radiation and chemo treatments asap.

So, Friday night at 6:45, Robb received his first radiation therapy, though it was not the IMRT he was due to receive, it was a focused radiation in the area of the tumor. He also started chemo, in pill form, to be taken each night for the next 6 weeks. He has been in the hospital since – so 10 days now and he has had 7 radiation treatments. He continues to have balance and stability issues, which is the main reason for keeping him under their care. He is adamant that he prefers to be home & commute for the therapy, but we need to wait for the radiation to begin to shrink the tumor & reduce his symptoms before they will feel comfortable with that option. They significantly increased the steroids that he is on as well on Wednesday and have slowly begun to taper those – the steroids are meant to decrease the swelling that the radiation can cause initially, though obviously the hope is that the radiation will soon start to reduce the tumor’s size.

I think that gets us relatively up-to-date. I realize though that I’ve neglected to mention the plethora of people who have already come to help us the past few trying weeks. I will, but I wanted to get this posted quickly & will give credit where it’s due soon.

The Big Shave

I'm kicking myself now for not taking a before picture because I shaved Robb's 3 1/2 week old beard today. He went from grizzly man to looking like himself again - I think he felt better afterward too. I intend to keep up with his shaving from now on as I prefer him like this. Now I need to get up the courage to shave his head too, perhaps tomorrow.

He took a stroll down the hall with a walker today and the help of about four 7th-floor aides. His steps looked much improved though the balance was still not great. His conforming, or IMRT (intensity-modulated), radiation therapy begins tomorrow and we're hoping this more precise treatment will help speed up the shrinking process and reduce his symptoms so he can come home.

Laurel, Robb, and Beck relaxing in Napa:
August 18, 2008

Background, Part I

I'm not sure how to start this. It's now been just 6 weeks since we first learned that Robb may have a brain tumor. And we are currently spending yet another Saturday night in the hospital (the last 3 out of 4 have been here) on his 3rd admission to the hospital in a little over 3 weeks.

The first symptom was double vision, which started in early to mid August. Following a 2-week trip to California, Robb visited his ophthalmologist and they diagnosed a forth nerve palsy which basically meant a muscle which controlled his right eye was weakened. They then decided to figure out why the palsy had occurred, so he was referred to a neuro-ophthalmologist who ran an MRI and several blood tests to determine a cause or at least rule things out.

Robb received a call from this doctor on Friday September 5th with the news that he may have a brain tumor & could he please come to his office that afternoon. There the Dr. informed us of a lesion in his left thalamus and upper brainstem, which was possibly a tumor but may also be caused by some type of infection. He left us to research & stew on this over the weekend. Robb had planned a surprise trip for me to the North Fork on Long Island to celebrate our 11th anniversary (yes, I'm as shocked as you that we've lasted this long!). We postponed the trip one night but spent the Saturday out there visiting some wineries and of course contemplating the range of possibilities that lie ahead for us.

We were referred to a neurosurgeon at Columbia the following week with whom we did not end up feeling very comfortable. Fortunately, we had also scheduled an appointment with a neuro-oncologist at Memorial Sloan Kettering that Friday. Dr. Posner (presumably the best neuro-oncologist in the country) confirmed the bad news that it was indeed a tumor & likely an astrocytoma. It would not be operable but they would need to perform a biopsy to confirm the diagnosis. He indicated that the normal course of treatment involved 6 weeks of radiation and simultaneous chemo but that would be discussed in more detail pending the biopsy. We immediately met with the head of neurosurgery at MSK, Dr Gutin, and he verified a needle biopsy (less intensive than a craniotomy) would be performed in about 2 weeks.

It was a tough waiting period. But we went ahead with a 1st birthday party for Beck and enjoyed our weekend with family and a small group of friends. In the meantime, Robb noticed some tingling on the right side of his body and his face was showing asymmetry/droopiness on the right side (and the double vision which had been corrected a month before), but he felt perfectly fine otherwise.

The biopsy was done on Thursday, September 25th and went well. Dr Gutin said he got a great sample and confirmed it was indeed an astrocytoma but the Grade level would be confirmed in a few days. Robb stayed in the hospital 2 nights and came home a little unstable on his feet, but otherwise fine.

I think that’s all I can post for one session. Will continue later . . .

I've been asked by several people to provide more frequent updates on Robb's illness and came to the conclusion that a blog may be a more appropriate forum than periodic emails. Please check here from time to time for updates on his progress and ongoing fight.