His Gift to Us

My mom's minister described these last days/weeks as being Robb's gift to us. It didn't resonate with me, especially given Robb's current physical state, until yesterday.

He was alert and smiling and even enjoyed it as we took some family photos. I'm so thankful to have had the opportunity to capture these memories for the kids and myself.


The kids liked climbing in their Dad's bed and he seemed to enjoy the company.


A kiss to and from Daddy. Smiles for me.

The last 2 weeks have been the hardest yet through this journey, but I'm heartened by everyone's kind words and outpouring of support.

Home & Stopping Treatment

Robb began eating and drinking better once the blood thinner treatment was started in the hospital. He has had many more moments of alertness as well, though he continues to sleep most of the day.

His MRI was done yesterday (Tuesday) morning and the results were poor. The tumor has grown since his last MRI on December 18th - this is over the same period as two chemo treatments and Avastin. It is clear that the tumor is no longer responding to treatment (most patients have positive reactions within a week of receiving the 1st Avastin) and therefore Robb will not undergo any more. They are unable to give an exact prognosis, but it's on the order of weeks, rather than months.

The hospital honored our wishes to get him home as soon as possible and discharged him this morning. Hospice has already been in again this afternoon to resume services.

I am happy that both Bob and Beteena could be here yesterday to learn of the latest update from the doctors directly and ask questions of them. It was also nice for all of us to be together given the difficult news.

Our goal now is to cherish the time we have left with Robb and to make him as comfortable as possible.

No Avastin

At the doctor's appointment yesterday, Robb's pulse was very elevated so they would not administer the Avastin. I had some reservations about returning to Sloan Kettering for a battery of tests to determine the cause as he has clearly expressed his desire not to return, but when we asked him & explained what was happening he seemed to understand and agreed.

The CT scan they ran last night revealed several small blood clots in his lungs. He is now on blood thinner and will stay in the hospital for a while to be observed. An MRI is scheduled to be done today & we are anxious to hear what's going on with the tumor now. He is sleeping restfully and seems comfortable at the moment. We hope that some of his recent symptoms like his extreme fatique and lack of appetite and thirst reverse with his current treatment.

It seems unlikely that the Avastin will continue to be given as it may have been the cause of the pulmonary embolisms, but we are waiting to discuss with his neuro-oncologist team.

We're taking it day by day.

Hospice

Hospice came by yesterday and got the process started for admitting Robb into their care, and his nurse and a social worker visited today. It was a tough reality for Beteena, my mom, and I to face as they talked about eventualities that we wish we didn't need to discuss.

We will be able to keep the aide that Robb has grown fond of, but therapies will cease. If Robb had more energy or desire, I would fight for that but it makes sense. We were shown some exercises by the physical therapist to keep him active and we'll do our best to do those with him each day. A hospital bed arrived today and should help to make Robb more comfortable - and make it easier to eat as he doesn't leave bed much nowadays.

Robb continues to sleep a majority of the day. His appetite and thirst have diminshed as well now too. He has been a little more chatty with me the past couple of days but unfortunately I am having more trouble than ever understanding him.

Meanwhile, we have Robb's next appointment to meet with his neuro-oncologists on Friday and his 2nd Avastin treatment. We are encouraged that the doctors wish to continue treatment as it shows there's still hope that some of his symptoms could reverse.

Therefore, I remain hopeful that this last round of chemo combined with the Avastin might provide some visible results, finally. At the same time, it's hard to ignore the obvious physical deficits Robb is facing currently. I'm heartbroken when I think about where we are in this process and how quickly we've gotten here.

New Year's & Hospice

The week was uneventful until the afternoon of New Year's Eve when Robb took a header onto the bathroom floor. The aide who's been watching him most days felt so guilty, having left him for a moment to move the wheelchair aside. Robb got a good gash on his chin, and Bob & I took him to the Sloan Kettering urgent care center for a CT scan. Fortunately, the scan showed no signs of bleeding in the brain, so we were able to bring him home by about 10:30 - in time for my mom, Bob, Annette, and I to ring in the New Year at midnight with a little champagne, all of us wishing for a better 2009.

Robb is still very fatigued, sleeping most of the day. His second round of the 5-day chemo began tonight with pills at home. And his therapies are finally starting up tomorrow after a few weeks wait - the holidays seemed to have slowed the bureaucracies of the insurance and nursing service to a stand still.

We have also sought to get hospice care. We feel that they may be able to better provide some psychological and medical advice than we are currently getting. It's unfortunate in that we've really come to like the nurse we've been assigned, but the additional services we can get from a hospice-trained nurse should better help us through this stage. Our hope is to eventually revert back to standard nursing but it's the right move for now. One good thing is that the hospice service is affiliated with our current nursing provider, so we can keep the therapists, and, most importantly, the home health aide Robb has come to like and trust (despite the fall).

I've been able to get into the office more now that we have the regular hours with the aide - and I've even gotten to the gym a couple times too. It's nice to have the distractions for even a short while. The kids are doing well. Laurel looks forward to going back to school on Monday and Beck will love having his nanny back fulltime again. Beteena arrived yesterday for two weeks, and my mom remains for the forseeable future, helping with the kids or whatever needs to be done to keep things moving along around here.