Christmas & Post Avastin Fatigue

Christmas was fun for the kids. Laurel & I picked out a great (big) tree which we took pleasure in decorating 2 weeks ago and then she and my mom baked cookies earlier this week. Laurel really enjoyed the anticipation of Santa's visit and had many questions about how he'd get here & whether Rudolph would be joining him or not. Laurel & I attended a Christmas Eve service at a nearby church which was a special addition to the holiday for us. Beck & Laurel had fun with their gifts and the events of Christmas but unfortunately Robb was not an active participant in most of the day.

He has been feeling quite fatigued since his first Avastin treatment last Friday. When he's not eating (at least his appetite is still good), he's preferring to lie on the couch or in bed to rest. He's feeling fine with no pain, but his mood is certainly more down than before. He will resume the Temodar chemo next Friday for 5 days and then his next Avastin treatment is on the 9th.

I had a Sloan-Kettering Chaplin whom we met in the hospital come visit Robb today. I hoped that she might be able to offer some spiritual guidance to him (and me). I think the visit went well enough and we may have her return again soon.

We look forward to Bob, Annette, and Gregg's arrival tomorrow.

Today's Appointments

Bob & I escorted Robb to his appointments today and the news from the neuro-oncologist was generally positive. The MRI shows that the tumor is responding to the radiation and chemo treatments so far in that there is no progression and, in fact, it may have slightly shrunk.

Since Robb is still battling symptoms like rightside weakness and speech issues, they agreed to begin the Avastin treatment today. The Avastin will be administered every 3 weeks, with the Temodar continuing on its 5-day on, 23-day off course concurrently. An MRI will be given every 2 months.

It may take a week or two to see any real effects from the Avastin and the continued treatments should provide ongoing improvements. The risks to the drug, in our minds, are outweighed by the potential to alleviate some of the current symptoms soon. Another benefit to starting the Avastin is the chance to taper off the steroids more. Robb has been on quite a high dose for the past 3 weeks and has been feeling anxiety and restlessness at night, so a reduction in those will be a relief to us all

Robb seems to like the home health aide he's been assigned and he'll start coming for 12 hour days next week. The home therapists are being set up once again, so the physical, occupational, and speech sessions should begin next week as well.

Have a nice weekend!

Quick update

Robb happily came home this Sunday. We now have a home health aide assisting with his care for 8 hours each day (though I'm looking to potentially increase it to 12).

We finally got word that Robb will receive the Avastin treatment this Friday. The insurance issue is still not resolved, but it will no longer delay the process. We look forward to the results of his Thursday MRI, doctor's appointment Friday, and treatment Friday as well. I'll keep everyone posted this weekend.

Heading Home Sunday

It's been a long week in rehab for Robb. He got news though that he'll be headed home Sunday morning. He's had more than 3 hours of physical, occupational, and speech therapy each day here, and will get the same tomorrow. Logistically, it's been less than ideal and Robb's had to survive a few days on a puree-only diet, but he's back on solids again and is relieved now that the end of his stay is in sight. There seems to be modest improvement in his rightside mobility and his speech seems a little better - it's often hard to distinguish changes day to day, but it appears to be positive progress from where he was a week ago.

Meanwhile, I've been trying to resolve the Avastin approval process. It is still in some sort of insurance limbo but I've been assured we'll know first thing Monday and then it can be administered soon thereafter. He does have an MRI scheduled for Thursday of next week and a follow-up with his neuro-oncologist Friday.

With Robb coming home, we're finally focusing on some Christmasy things this weekend, including a tree buying outing planned for tomorrow and a visit to Santa on Sunday.

Bittersweet Transition

Robb was successfully transferred across the street to Cornell yesterday afternoon. Neither of us were too upset about leaving the hospital, but once we got ourselves into the rehab center we couldn't help but feel conflicted about the new circumstances. We'd just left the place where the nurses, aides, and doctors knew us & often went out of their way to help us. We were now a no-name patient with demanding needs, which don't often fit well within a routinized facility. After much contention, we were able to get the one-on-one care he needs overnight (particularly after his Friday night fall at MSK), since there are no sleeper chairs available and therefore I will not be able to stay with him. Oh, and the food is horrendous! Dinner's arrival was the point I seriously debated making a break for it & just figuring out how to make do at home. Alas, I realized I didn't have the prescriptions for the necessary medications he needed so he had to remain where he was.

Fortunately, I do feel better about his circumstances today. The doctor we met gave me comfort that he is familiar with cases such as Robb's and that they would be able to do good work with him over the next few days. They'll then reassess his therapy treatment plan and will be better able to give us an idea of how long he'll need to stay there.

Other good news is that kids are indeed allowed to visit, so Laurel already made one trip there this afternoon. I hope to get Beck up there later in the week. And for my sake, the new location and his therapy schedule will permit me to get to work most days this week, which is actually a welcome change.

Needless to say, the latest setback in Robb's health and circumstances has been quite tough on all of us - Laurel's been particularly sad this past week and needy of my time. We continue to remain hopeful though that this therapy, chemo, and eventual Avastin treatment will demonstrate more encouraging results.

Going to rehab

Robb was fortunate to be accepted across the street at the Cornell inpatient rehab facility. I had hoped for a place more convenient to our apartment, but it was more important to simply get him in and they will also administer the chemo he's currently on (apparently not every facility will do that). He will be discharged from the hospital this afternoon and admitted there. The expectation is that he'll stay for one week and get 3-4 hours of therapy a day. Robb can't wait to get out of MSK, I just hope he isn't too disappointed at the new place. They tell us that visitation is 24 hours so I can continue to stay overnight with him but they do not allow children as young as Laurel & Beck. So, when we get there today I need to determine how strict those policies are.

Laurel really missed her dad this week. So once I learned that it would be difficult to see him at Cornell as well, I brought her to see him at MSK after school on Friday. The nurses here know us & accommodate her visiting for a short time. They both really enjoyed it and spent much of the time together watching cartoons in bed.



The bad news this week is that we are still waiting on insurance approval for Avastin. So they are going to send Robb off to rehab without it and will bring him back in a week as an outpatient to get the the drug. It's a frustrating scenario but they seem to think he will still really benefit from the therapy for a week anyway. He did start chemo the other night and will now be on a 5 day on, 23 day off cycle (it's Temodar by pill again, though at a higher dosage). Robb also had a fall yesterday (he's fine, thank goodness) and the CT scan run after that indicated a similar amount of swelling as earlier in the week, so they are increasing his steroids slightly to hopefully bring that down some.

Rehab & Avastin

Robb spent two nights in a special observation unit as the doctors were concerned about the lack of mobility on his right side. After a significant increase in steroids, he showed enough improvement yesterday to be moved back into a regular room. He is now able to lift and move both his right arm & leg, but it is still limited.

They started to discuss with us the options after his current stay in the hospital & are recommending acute rehab. This would entail Robb entering an inpatient facility for a short duration, though long for us (likely a couple weeks), to get intensive therapy and support. While not ideal, Robb claims to prefer rehab as anything seems like a better alternative than the hospital to him at the moment.

Also, they have decided to begin giving him Avastin, a Genentech drug not yet approved by the FDA for treatment of brain tumors. This drug is one that is already approved for colon, breast, and lung cancers (I believe) and has shown good promise for, and is on the fast track for approval for, brain cancer as well. This should help to decrease the swelling Robb is still experiencing and also has the additional benefit of potentially reducing the tumor size as well.

Robb should receive the Avastin tomorrow & then every 2 weeks for a time, and they will also begin Temodar (chemo) again simultaneously. We hope to learn about which rehab center Robb is accepted into in the next few days.

September 1997 (my goodness, we were young), and 11 years later . . . . . .