My Birthday at HUP...

Attached are a few pictures of our little party in my mom’s hospital room on Friday. The kids were thrilled to see my mom and their visit definitely lifted her spirits and made her a little more determined to fight. During her visit, Cadence took every chance to feed my mom. The attached picture shows her giving my mom cheetos, these were followed by Whoppers and Peeps. There were no candles allowed on the birthday cake but it was a Black Tie Mousse Cake from the Olive Garden so it doesn’t really need much advertising, now does it?! Cadence told me later that ours was the best party in town.

My mom walked down the 20 foot hallway outside her room in the Rhoads building assisted by 2 physical therapists. This is the first time she has tried to walk in 4 weeks. She did great and definitely enjoyed the view from the hall window, mostly students running to class in the rain, but better than the side of the building she sees from her bed.

All of the tests run on my mom’s immune system came back with great results. Her T cells were a bit low but her doctor believes that is nothing to worry about. They started an infusion treatment of gamma globulin (no idea) in hopes of pumping up her immune system. Her oncologist is also contacting an expert in the treatment of PML who was recommended by a friend of ours from Biogen Idec and is looking forward to discussing my mom’s case with him.

I was not able to make it to the hospital to see her this weekend for fear of infecting her with this horrible cold I caught, I miss her dearly and will be relieved to see her again. Before my mom became ill it was rare for me or the kids to go 2 days without seeing her so this has been difficult to say the least. Dana said she continues to ask for me and that today her speech was much clearer and she is starting to ask questions about topics we last discussed before she was readmitted to the hospital last week.

She told us that she is planning on coming home this week and I feel extreme sympathy for the doctor who tells her that is not possible, but not enough to volunteer...I’ll be damned if I am doing it!

Our family continues to hope.

Surviving at HUP...

First, I wanted to thank each of you for your thoughts and prayers, they are truly appreciated and desperately needed. Second, I just wanted to give everyone an idea of what is going on with my mom and our family.

We spend a lot of our time on the R1 train between Woodbourne Station and University City or stealing chairs from various waiting areas in the hospital and cramming them into my mom’s room. On any given day there are about 11 of us seated in her room, the portable toilet has become a seat of choice as well as your coat thrown across the floor. My mom’s condition has deteriorated some since last Thursday when she was transferred to HUP, although her legs and arms are extremely strong she doesn’t have the balance to walk or some of the coordination needed to feed herself all the time and her speech is severely slurred, but her thought process is quick and sharp.

Some days are considerably better than others, she has always suffered from restless leg syndrome and it is much worse now that she cannot just get up and walk around and she tends to get very agitated and upset by this. Some nights she cries to go home and tells her doctors that she has to take care of Woodrow and Wilson (her 2 yellow labs). My stepfather, Dan, continues to sleep on the floor by her bed and is yet to leave the hospital since her arrival, on the worst nights Dana sleeps in the recliner by her bed, which I think is a definite reject from the 70s.

We are trying to get used to the fact that when the nurse tells us the “doctor” will be in between 9-11am she actually means that 6-8 doctors will arrive to gather around the bed beside our 11 or so family members. We have become extremely familiar with her oncology team, neurology team, neurosurgery team and now her immunology and infectious disease teams.

Today we have received clearance from the head nurse and hospital security to bring the kids to visit her as it is my birthday and my sister Kelly has made arrangements to have lunch brought in from the Olive Garden along with a cake. I can honestly say these are some of the most difficult moments in my life but this will be the birthday I remember fondly for years to come.

The infectious disease team has started conducting tests on her immune system and would like to try treating her with a drug called mefloquine which is used in malaria patients. The side effects are severe and her oncologist who leads this crazy circus is not sure if this is the route we want to take. We have prepared ourselves for the worst as best we can and continue to hope for the best. My 4-year old son, Connor, told me this morning, while we enjoyed the fruit arrangement sent from my office together, that even though Grandmom “has a lot of booboos” we should always remember “to not be afraid of the dark.” I think that might be some of the best advice I have received so far and I am going to take it.

Bringing us to date...

My mom became ill in October of 2009. She woke up one morning and complained of a slight loss of balance after a cold, it lasted a few days before we decided she should see a doctor. Her primary doctor diagnosed it as vertigo and prescribed some meclizine and figured it was said and done. In January of 2010 the balance issue had not been corrected and we noticed a slight slur in her speech when she was tired, we decided a trip to the ER would give us access to some answers a lot faster.

After losing my mom somewhere between triage and a trauma room the doctor who finally found her told us that she had had a stroke. My mom’s sense of humor being what it is she turned to the doctor and said “Get the hell outta here, are you serious?” She spent 3 days in the hospital and was sent home with physical therapy instructions and a starter supply of Plavix. Two days later the vomiting started. It was just once or twice every few days at first so I followed up with her cardiologist and her neurologist. They both said it was normal because the stroke had affected her cerebellum. After three weeks went by and the vomiting increased to a minimum of 4 to 5 times a day we decided another trip to the ER was in order.

My mom was so weak at this point that my stepfather had to carry her down the steps. She sobbed uncontrollably and begged us not to make her go down the steps. This reaffirmed our need to go to the ER, you see my mom doesn’t cry and sobbing is certainly not in her. Ten years ago she was diagnosed with non-Hodgkin’s lymphoma, while in the waiting room for her first visit with the oncologist she turned to me and said “Jodey, I don’t belong here. These people are sick, they have cancer. They need this man’s time more than I do” Crying is just not how she deals.

Our second trip to the ER was not much better than the first. Although they didn’t lose her in the many rooms of the trauma center they did diagnose her with a brain tumor. Of course, they were wrong but it at least gave us an idea of where to go next. Dr Schuster (her oncologist that she thought everyone needed to see more than she did) received a phone call at his office at HUP and had her transferred to his hospital on the diagnosis. After the first day at HUP they had stopped the vomiting, put my mom back on solid foods and explained to us that she did not have a brain tumor. That is where the nightmare began…

My mom has a serious viral infection called PML. Simply put, PML is a serious progressive viral opportunistic infection of the brain's white matter. The virus responsible for PML is one that most everyone has been exposed to; the JC virus. In people with undamaged immune systems, the JC virus is harmless. However, in people with damaged immune systems, such as people living with HIV or experiencing chemotherapy, the JC virus can cause serious infections, in this case PML. The thing that makes this not so simple is that my mom does not have HIV and she has never had chemotherapy despite her lymphoma diagnosis 10 years earlier. Because there are so few cases there are no definite treatments. PML is taking away my mom’s ability to send messages within her brain. She lacks coordination needed to walk, feed herself easily, and speak clearly. Now that we have the diagnosis and know for sure what is happening to her we are left to think, “Would it be horrible of us to ask God for the stroke instead?”