In the long term...

Dr Schuster has agreed to proceed with the third round of T cell therapy. He has explained to our family that the disease has not only destroyed the myelin in certain areas of my mom’s brainstem but has caused damage to the nerves themselves; he has little hope for her recovery but even less hope of convincing Dana that stopping now is the right choice.

My mom’s illness has taught me that my sister Dana is a force to be reckoned with. She has a sharp, sarcastic nature that leads people to believe she is an intimidating presence, but the reality of it all is that she uses that sarcastic shield to hide shyness and a heart of gold. Dana spends all her free time at the hospital with my mom or finishing renovations on her home where my mom lives with her. She takes care of everyone under her roof without complaint and carries the burden of my mom’s illness not out of obligation, but purely out of love. My mom has been in the hospital for four months and I can only think of 4 days that Dana hasn’t been by her side. Sometimes I think to myself that my mom has to get better because it just wouldn’t be fair of God to take her from Dana

I honestly wish I had Dana’s faith in my mom’s ability to heal but I am just not that optimistic. I see my mom in that hospital bed and just can’t see how she will get better. How close do you get to Death’s door before they don’t let you turn back? It scares me more than anything I have seen in my life. I don’t want my mom to live this way but I am afraid of losing her all the same. The emotions that run through me are confusing and hurtful. Sometimes I think it would be better to let my mom go and the guilt that comes with admitting that is enough to make me choke and other times I cry myself to sleep and beg God to leave her here with me.

Dana and I have accepted the task of searching for a long-term care facility for my mom. Once the third cell infusion is complete there will not be any reason for my mom to remain at HUP. The idea of leaving HUP feels strange somehow. We have spent four months of our lives at this hospital, we have learned how they operate and what buildings connect to where, we have even found the secret staircase in the Rhoads building that leads right to the cafeteria! We know this hospital, as we leave during the 7pm shift change there are at least 15 nurses who wave and call us by name, we know that the Rhoads elevators are extremely slow, but the ones in Founders actually talk and tell you if the elevator is going up or down, the bathrooms outside the Pearlman Center are usually the cleanest and if you accidentally pull the nurses button in the stall a nurse will actually come to check if all is well. I can think of much better places for a home away from home, but this is what we know and in a time when everything is so uncertain it is hard to give it up.

The social worker on the 7th floor of the Rhoads building gave me a list of 125 nursing homes/acute care facilities within 40 miles of our home. I think it is possible that she is as horrible at geography as I am because a 40 mile radius landed us some choices that were at least a 3 hour drive! Because Dana is good with locations she took the task of sorting the list by the distance they were from our home and work. I then took to the internet, searching each facility to see if it could accommodate a patient with my mom’s needs, this process brought our list down to 32 facilities. A friend at work sent me a link to a news story she had seen about the worst nursing facilities in the country, this eliminated 3 additional facilities (and scared the hell out of me!). Another friend and coworker pointed me in the direction of the Joint Committee which inspects nursing homes and long term care facilities and grades them on a scale of 1 to 5 based on several health and safety factors. Through these reports you can gain access to anything from patient complaints to the results of the last fire marshal inspection. I took advantage of this information and used it to eliminate facilities that had complaints of patient abuse or high numbers of patients with bed or pressure sores. Sadly, this eliminated more options than I thought it would, bringing our list of facilities we wished to look at in person down to 9 with an additional facility recommended by the social worker.

AristaCare at Meadow Springs was a bit further away than we would have liked but we decided to tour the facility first because the HUP social worker had suggested it and the facility had already sent their medical liaison to evaluate my mom’s condition and confirmed that they could accept her immediately. Kelly and Helen agreed to tour the facility with Dana and me because the more opinions the better, of course in the case of AristaCare the vote was unanimous. The smell of human waste that permeated the entire facility including the lobby was enough to have my cousin Helen lean over me as I completed the sign in sheet and say “What the fuck are you doing? It smells like shit, we’re leaving.” As we toured the facility and were led deeper into the bowels of hell (at least that is what the bowels of hell must smell like) we encountered a load of grouchy nurses who seemed to have nothing to do except for one who was eating a sandwich; how she managed to eat with that smell is still beyond me. We were introduced to the physical therapist on staff and she was nice enough to explain to us that the level of care my mom received would depend on how much her insurance was willing to pay. I have to give her credit and state that she did try to remove her foot from her mouth when our jaws dropped but the conversation was pretty much complete by that time. As we passed a nurse in the hallway flushing a patient’s feeding tube the Admissions Manager offered to introduce us to the respiratory attendant. I took a quick look at Kelly as she came up behind me and the slashing motion she was making across her throat mirrored my thoughts; Helen and Dana still had their faces buried in their shirts, trying to escape the odor. I politely informed the Admissions Manager that it wouldn’t be necessary for us to meet with any additional staff and smiled as I asked if she could show us the way out. At that point the smile was more of an effort to calm my gag reflex than a show of manners and I really could not remember how to get the hell out of there; I am thinking now that is how the other patients ended up there in the first place! We stepped back into the sunshine and fresh air, greeted by a little, old lady in a motorized wheelchair who kept drawing us into conversation with comments about the weather. She rolled along behind us as we walked to our car and kept up the polite chit chat; I heard the motor on her chair kick into a higher gear as the automatic door on my minivan eased open. Now, I can’t be certain but I believe she was going to drive that chair right through that open doorway, if the curb hadn’t been so steep I am sure I wouldn’t still be wondering about her escape plans.

Shoot the moon...

Each night Dana and I leave our office in Newtown and steer my minivan to the ramp for 95 where we will spend the next hour or so in traffic before reaching the parking garage at HUP. When you live in the suburbs you find traffic in the city quite amazing and you believe that it won’t be as congested when you try it again the next day. After making this particular journey just about every day for 4 months, Dana and I have gotten passed those asinine thoughts. We have realized that there is no good time of day that will allow you to avoid traffic into or out of the city, but we have learned that the type of vehicle you drive has a huge effect on how you are treated once you are a member of that traffic jam. In our four months of commuting we have taken several different vehicles and I know it sounds insane but I strongly believe the validity of this statement, “THERE IS NO RESPECT FOR THE MINIVAN.”

In the first few months of my mom’s illness, Dana and I rode to HUP each day in my husband’s vehicle, a 2006 Pontiac Torrent. The Torrent is your basic small model SUV, nothing special, and when placed in the congested city traffic it is pretty much unnoticed. We just chugged along with the rest of the vehicles and never received a second glance. Dana drives a 2008 GMC Sierra, which is a big and beautiful pickup truck. You step off the running board and hoist yourself into the seat of this truck and spend much of the trip worrying about how in the hell you are going to get back down once you reach your destination. When you are stuck in the congestion of city traffic in this monster people notice and avoid you. Smaller vehicles tend to cut off the guy behind you rather than dare to edge themselves in front of you and when you attempt to merge spaces between cars just magically open like Moses parting the sea. When other drivers look back at you it is not to flip you off or curse at you, but rather to confirm the fact that they just saw two women in the cab of what is considered by society to be a man’s vehicle. I must admit that you do feel quite superior peering down into the cars of you fellow traffic jam patrons, but spending 2 hours crawling along with traffic feels much worse when you realize it costs you $80 to fill your tank and you only get about 17 miles to a gallon!

The Toyota Sienna I purchased last year has become the transport of choice when heading to HUP. The minivan can hold up to eight people which is great when we all want to go to the hospital but are too broke for gas and parking. It gets great gas mileage, rides smooth and even has DVD players built into the headrests of the front seats. The only drawback to our luxury mode of transportation is that a minivan just doesn’t have it in the way of intimidation. Much of our traffic jam time is spent being honked at, cut off, flipped off and for some reason we are the target of choice for the homeless panhandler who hangs out on the corner of Chestnut in a pair of brand new Columbia boots. Because I truly love my minivan I was reluctant to admit this, but after the ride into HUP this evening I am forced to face the fact that the minivan is most definitely the Rodney Dangerfield of vehicles, no respect.

Tonight’s traffic jam landed Dana and I behind a school bus full of rowdy middle school boys. They spent part of the time taking their shirts off and hanging them out the bus window or running up and down the aisle and jumping from seat to seat with no concern for the occupant. Of course, the realization that the minivan behind them contained two women definitely raised the amusement level and before Dana and I knew what they were up to the first of many skinny butts was plastered to the bus window. From the scene we saw Dana and I imagined the laughter on that bus was extremely loud and totally obnoxious. As Dana and I made a very good show of ignoring the scene we couldn’t help but notice a rather large, heavyset boy come up to the window. Thankfully, as he assumed the “shoot the moon” position traffic began moving once again. The bus driver pushed the gas, the bus lurched forward and our hefty, little moonbeam landed on his backside holding onto his pants. The laughter was once again extremely loud and totally obnoxious, but this time it came from Dana and I in the minivan. We laughed hysterically for the next 10 minutes and left an opening between ourselves and the bus, but for the first time in minivan history, not a soul cut us off! Traffic continued to crawl and the busload of prepubescent boys continued to stick their buns to the bus window until we passed a cop on the shoulder writing a traffic citation. Suddenly, we were faced with a well-behaved group of boys smiling and waving at us.

We changed lanes after passing the police officer and as we proceeded off the ramp that was our exit, I thought about how my son would most likely not be riding the bus to kindergarten come September!

The wisdom to know the difference...

Our family is reeling from the positive results of the PCR. The experimental treatment that we pinned all our hopes on has not worked and now the fear of losing our mom is a harsh reality hovering on the horizon. Each time I let myself think of life without my mom an overwhelming panic rises in my chest. It takes so much effort to stop it from clawing its way out that I am truly exhausted at the end of each day.

Another MRI will be performed on Friday to see if the lesion in my mom's brain stem has gotten worse or remained the same. The results of this test will decide whether or not it is worth proceeding with the final round of cells that was stated in the original protocol. I feel in my heart that this final treatment will not make a difference, but I know how it feels to not want to stop too. The question I ask myself every minute of each day: Is acceptance of a situation the same as quitting? I don't want to lose my mom, she is a huge part of my heart and my soul but I don't want to make her stay in a life she doesn't want. My mom always laughed, I can see her smile and hear the sound of it ringing in my head. I miss those moments when trivial things were so amusing and we would laugh until tears came. My mom doesn't laugh anymore, things are not funny and our sadness is great.

Her doctor's keep talking about my mom's level of awareness and responsiveness and this seems to be of so much importance to them. I know my mom is with us, I see the recognition in her eyes when she sees our family, but it doesn't carry the importance for me that it does for her doctors. I brought Cadence to the hospital with me that day to visit my mom and I saw my mom's eyes on her; my mom was seeing her granddaughter, really seeing her. The heartache for me is that my mom cannot interact with the people she loves; she watched Cadence that day and listened to her sing and tell stories but she couldn't talk to her, hug her, touch her silky baby hair. What kind of life is that when those you love become nothing more than a picture show.

There is still the chance that the third treatment will kill the virus, but the prognosis is grim for my mom's recovery of functionality. What is the point of killing a virus if the affects of it can never be taken away. I don't want to condemn my mom to a life without her own laughter, her own independence and I know she would not want that either. The hard part is knowing when to stop hoping and whether or not you can live the rest of your life with the decisions you make. I carry a lot of guilt over some decisions I made in my mom's care and despite the fact that others tell me I made the best choices possible with the information I had, I know it is still baggage that I will carry for a long time to come. I will do anything in my power to ensure that no one else in my family has to endure the weight of guilt like I do, but I also have to keep my mom's wishes in my sight as we move forward. This is an emotional balance beam that I am not sure how to move across and the consequences of a fall are very steep.

Please, no...

The spinal fluid is positive for the virus.

Our family has prayed for a miracle to save my mom's life, but we now know the true miracle is that she has been ours to love for all these years.