Updates from Sunday

Many thanks to all of you who have emailed, called, sent Facebook messages, etc.  The support we have received has been phenomenal.  I have told Robert about all your messages.

There has not been much significant change since I wrote yesterday.  Robert remains on a ventilator, and continues to have some amount of bleeding in his lungs.  My biggest concern overnight had been his level of sedation, as I felt that he was a little too awake and aware of what was going on, and appeared to be uncomfortable at times.  He seemed particularly aggravated by having his breathing tube suctioned - a necessary event to try and minimize the formation of blood clots down in his lungs.  After discussion with his physicians and nurses this morning, we increased his sedation substantially and he has been very calm throughout today.  This came at a price - at least for me - as now he does not respond to my voice or touch.  However, it is worth it to have him appear more comfortable. 

The other important discussion today was about different strategies to try and stop the bleeding in his lungs. Two different approaches that we decided on today were (1) increasing the pressure of each breath that the ventilator gives him to try and tamponade the bleeding a little, and (2) starting high dose steroids to attempt to stop whatever inflammatory process may be contributing to his bleeding.  An added benefit to starting steroids is that they have successfully lowered his fever, which had been persistently high for the past 24 hours.  Robert will continue to receive the steroids twice a day for the next 3 days. 

I am hoping and praying for a quiet night tonight, that Robert remains comfortable even with suctioning, and that the steroids will begin to take effect. 

Thank you for your prayers; they are our hope.

Gwyneth

Robert's in the Hospital

Dear Friends -

My first blog post....I hope I can live up to Robert's standards.

Robert unfortunately became quite sick on Thursday of this week.  While he had been feeling more and more fatigued over the course of the month, he had noticed a significant increase in his shortness of breath and stamina since receiving Doxyrubicin (his new chemotherapy) on Monday.  We had initially attributed this to a typical chemo reaction, and came into clinic on Thursday morning for routine bloodwork.  His hematocrit (a measure of his red blood cell levels) was very low and we decided he needed another transfusion.  However, when we went upstairs to the infusion center and they checked his pulse ox (a measure of the oxygen level in his blood), they found that to be quite low also.  Given this, his oncologist decided to admit him to the hospital on Thursday night.

Over the course of Thursday evening into Friday morning, Robert required increasing amounts of oxygen.  He had a chest CT which showed increased infiltrates throughout his lungs, but it was difficult to tell whether or not this was because of further bleeding in his lungs or because of a new infection. After a lot of discussion with his oncology team and the lung specialists here at Hopkins, it was decided that he should undergo a bronchoscopy (using a breathing tube and a small camera to look into his lungs and take biopsies) to try and determine what was causing the problem.  This decision was not made lightly, as we knew that it was very likely that he would be unable to come off the breathing tube after the procedure.  Often times when someone is having significant breathing trouble, and their lungs get to "rest" on the ventilator, it is hard to convince the lungs to give that up!  Still, treatment decisions were going to be determined in part by whether we were going to view this as primarily a bleeding problem or primarily an infection problem, and so we decided it was a necessary risk.

Robert had the bronchoscopy done around 4pm on Friday evening and tolerated it without too much difficulty.  The pulmonologist doing the procedure said that he saw a significant amount of bleeding (termed alveolar hemorrhage).  They obtained samples to send to the lab for cultures to look for infection, as well as biopsies to look for tumor cells (although we already know that he has widespread tumor in his lungs).  Robert came back from the procedure intubated (with a breathing tube), as we had expected, and because it is uncomfortable to have a breathing tube in place, he was also heavily sedated.

Since the procedure, now about 24 hours ago, Robert has remained intubated and sedated but stable. He is generally comfortable and occasionally will open his eyes and look at me.  He can nod his head a little, and tells me he is not in pain.  He is being closely monitored, and his blood counts and blood gases (a measure of how well his lungs are exchanging oxygen and carbon dioxide) are checked frequently. 

It is our most sincere hope and prayer that the bleeding in Robert's lungs will stop and that he will be able to be extubated (have the breathing tube taken out) in the next couple of days.  There is a very real possibility that the bleeding is being caused by increasing tumor in his lungs, and if that is the case, it will be very hard to treat. 

Robert's family is here in Baltimore with us, as is my own, and we have been surrounded by wonderful friends as well.  William came in to see Robert before his bronchoscopy, drew him a picture to hang on his wall, and listened to Robert tell him a story (one of their favorite things to do together).  We have decided for time being that it best for William not to see Robert while he is intubated, and he is enjoying spending time at our house with his Nana (my mother). 

The entire Johns Hopkins community is working to treat Robert and to explore all therapeutic options, and I have been very happy with the care that he is receiving. 

I ask everyone to dedicate their prayers and whatever personal sacrifices they feel called to offer up for Robert's healing. 

Thank you as always for your love and support.
Gwyneth

Not feeling very well

Unfortunately, I've not been feeling very well for the last week or so.

We had a terrific Christmas (in Bethesda with Gwyneth's family - photos here and videos here) and then took William to Disney World after New Year's (along with my sister's family and my parents - photos here).  Had a really wonderful time!

Just after this trip, I started to get much more fatigued and short-of-breath.  My sputum was pretty ugly (including some blood), and I was getting daily chills and fever.  We did some blood work and got a new CT scan: my red blood cell count was quite low and my lungs had lots of infiltrates (hazy areas that probably indicate bleeding and/or infection).

So, last week, I received a blood transfusion, which made me feel a little better.  We also started some antibiotics, hoping that my lung issues were mainly related to infection.  However, I didn't improve that much (the fever and chills stopped, but I'm still very fatigued and short-of-breath).  Just yesterday, I received another blood transfusion.

Unfortunately, it appears that my lung issues are likely caused by tumor and tumor bleeding.  This has happened before (last spring), but looks a bit worse now.  Fortunately, I improved a lot with last summer's chemotherapy, so we're headed in that direction again.  The oral "biologic" agent that I've been taking for six weeks (Sutent) doesn't seem to be working very well.

So, I'll likely start a course of doxorubicin chemotherapy next week.  This will be one infusion (as an outpatient) every three or four weeks.  Fortunately, I'll be allowed to receive this through an IV, so I won't need a new, permanent catheter.  This is good, as I've had issues with blood clots and catheters in the past, and I'm continuing to have blood clots in my right arm.

I'm quite comfortable when sitting, conversing, or walking short distances.  But, longer walks - and especially stairs - really make me huff and puff.  I've been able to work some, but mostly have been at home.

This has been hard on us, so we definitely appreciate your prayers and support.  Hopefully, a bit of the chemotherapy will get me feeling better (I know - given what you usually think about chemotherapy - it sounds a little bit odd!).

Robert and Gwyneth