More tests mean more questions...

My mom continues to have her good days and bad days, making this roller coaster ride that much worse. Some days I will walk into her hospital room with Dana and she will not even be aware of us, but then the very next day she will be answering the questions Chris asks while she sits at her bedside or trying to mouth Helen’s name through her lips. Yesterday was a very good visit; my mom was alert and aware as we all filed into her room with our gowns and surgical gloves in place. Because we are all fairly broke after this month of traveling between home and HUP we arranged to ride together yesterday. Dana, Kelly, Chris, Helen and I arrived at HUP courtesy of my minivan, so when we file into my mom’s room we are a parade without the float.

We helped Dan wash my mom’s hair because the dry, leave-in shampoo the hospital offers is totally unacceptable to him. “Your mom would not like that,” he says each time her hair goes unwashed for more than a day. Dana trimmed and filed her fingernails and covered her hands in lotion while Kelly did her feet. During this entire “spa” excursion we chatted to each other and watched as my mom’s eyes went to the person who was speaking. She watched each of us intently as we spoke from different areas of the room. It was wonderful to see her so aware of us and she even managed to push sound from her mouth. It was just an “ahhh” sound but it was her voice and I didn’t realize until then how much I missed the simple things about my mom; the sound of her voice, the smell of her newly washed hair. We love her so much, would God really take her?

My Aunt Cathy came to visit my mom over the weekend and I saw how difficult this is for her. Her last visit with my mom was in February when we received the PML diagnosis. At that time my mom was still able to move and talk, so I am sure it was quite a shock for her to be faced with my mom’s immobility and the trach and feeding tubes. As I dressed into a gown outside my mom’s room with Cathy I tried to tell her every detail of my mom’s appearance to eliminate the shock of her deterioration. I warned her about the trach, what it looks like when they suction her lungs, the fact that her tongue doesn’t always stay in her mouth and sometimes her eyes glaze and don’t focus; I told her all these things and she assured me she was fine. “If you’re not fine and the tears start, make sure you tell her it is because you are so glad to see her,” I said. The changes in my mom’s condition have been gradual for me but I have to remember the shock it is for those who haven’t seen her every day. For some reason, it is important to me that my mom not see fear in our eyes and so I try to cover it, despite the fact that I know she sees right through us all and always has. As Cathy came through the doorway and looked to my mom in her bed, the tears came. She smoothed back my mom’s hair as she spoke to her and told her she was so happy to see her. I realized instantly that she meant those words, she cried over the joy of seeing my mom not over sadness of the disease she endures. What I say in that moment were two sisters who missed one another dearly. And for a bit my mom wasn’t sick, she was just enjoying her sister and the shock was all mine.

Because of my mom’s inconsistent responsiveness, her doctors thought it would be a good idea to perform an EEG to check her brain activity. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. These special sensors called electrodes are attached to your head with glue that is almost impossible to get off and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. These lines mean pretty much nothing to me and after talking to the neurologists who read these tests I realize it means little more to them. Certain conditions can be seen by the changes in the normal pattern of the brain's electrical activity. This seems like such a simple thing but things aren’t always as they seem. After the test was performed the doctors came to tell us that there was a lot of brain activity from my mom where they had expected to not find anything. This was great news, but before we could even crack a smile they explained a bit more. Although the activity level was high they still needed to decide if the brain activity was cognitive thought or just reflex. In my heart I know my mom is there, but I am forced to wait for further interpretation of the EEG results.

The activity level of the EEG did push us forward to having a lumbar puncture performed the next day. A lumbar puncture is a procedure to collect and look at the fluid surrounding the brain and spinal cord. During the lumbar puncture, a needle is inserted into my mom’s spinal canal low in her back. Samples of fluid are taken and a test called a polymerase chain reaction or PCR will be performed to look for levels of the JC virus. PCR is a complicated test to explain and required a conversation with the MD I work with before I could begin to understand it; in no way should my lame explanation of this theory reflect on her brilliance! Basically, PCR is a way to amplify a piece of DNA containing a particular sequence or target (JC virus, in our case). The method relies on thermal cycling; a process of repeated heating and cooling to start DNA replication, each strand is then used as the blueprint to selectively amplify the target DNA.

The problem with this test is that it is positive or negative not quantitative, which means it does not measure the level of the virus, only whether or not it is there. This leaves us with more questions just as the EEG did. If the test comes back positive do we decide the T cell therapy did not work for my mom or do we consider the fact that the first two treatments could have lowered the virus level and we still have a chance of killing it if we move forward with the third, postponed therapy? If the test is negative do we do the third round of T cells as an insurance policy against the fact that the level is too low to be detected but still there with the ability to grow? I used to think that decisions like these were based on medical facts, but through this experience with my mom’s illness I have come to realize that there are actually very few medical facts. The practice of medicine is just like any other part of life, you do the best you can with the information you have and people are always your most unpredictable variable.

HUP meets Cadence...

Because she hounded me for weeks and also because she has the best beggar’s face in history, I gave in and allowed 3 year old Cadence to visit my mom. I was very concerned about her reaction to the visible affects of my mom’s illness but as I watched her snuggle up to my mom in that hospital bed I knew she was fine. As my Aunt Deb said, Cadence sees with her heart and at that moment her little heart only had room for Meemom. My mom was sleeping when Cadence came in but once we had her tiny hands covered in surgical gloves and a huge hospital gown tied at her back Cadence soon ended that nap; “Wake up Meemom, I’m here now!”

My mom’s eyes came open and focused on her youngest grandchild, as recognition dawned she pulled up and turned herself away. I knew in that moment that she was afraid of how she looked to Cadence and I murmured to her, comforting her, convincing her it was fine. She turned back as Cadence pointed to the trach tube and announced “Meemom, I love you pretty necklace.” We all smiled, seeing life through a child’s eyes is quite wonderful. My mom’s eyes never left Cadence’s face during that 2 hour visit in which we had to listen to a million rambling stories, a rendition of Twinkle Twinkle Little Star and demands that Meemom “Wake up her mouth.” Of course, my mom tried to speak because how can you not try to satisfy the innocent requests of a child, but each time she tried there was no sound just movement and bubbles of saliva. It didn’t really matter that she didn’t talk in that moment; we were thrilled that she tried and the light in her eyes said more than enough. Cadence moved on to coating my mom’s mouth in flavored lip gloss, which made us laugh as we watched my mom’s tongue peek out and lick it off. It is an ongoing joke in our family that my mom runs through a tube of flavored Chapstick each week because she keeps licking it off of her lips and is then forced to reapply!

Cadence has not seen my mom or stepfather in 3 months and her joy at the sight of them both was a thrill. When my mom finally fell asleep, Cadence sat in the family room of Rhoads 7 and played board games with Dan. She pulled out a chess board, “Papa Dan, you play with me? Peas, peas! (the “l” in please is hard to come by somedays). Dan set up the game board while Cadence moved the knights around yelling “Nay, nay, nay.” They played until it was time to leave and as we walked passed my mom’s room Cadence yelled “I love you, Meemom! See ya later!!”

My mom always corrected us if we were leaving her house and said “good-bye” because she felt that it was too permanent; she taught the kids to say “see ya later” or “see ya soon” and hearing Cadence that day brought me to the edge, suffocating me. It brought to the surface the fear I hide, the fear of losing. I don’t have many memories that my mom is not a part of and I am afraid of how this will end; losing her will leave part of me dead and empty and somewhat alone without her. She is my voice, my laughter and my song, the mirror of my unseen heart, she is the place where I always belong and I don’t want to say good-bye.

Two steps back...

The third and final T cell treatment was postponed on Friday due to my mom's failure to respond to her environment. Dana came in to see her that Wednesday and said she did not show any response or recognition and one pupil was larger than the other. An MRI was ordered and performed and a meeting with our family and each of my mom's doctors was scheduled for noon on Friday. We all gathered in the small family room of Rhoads 7 to discuss my mom's case. The other doctors on my mom's team stood against the walls while Dr Schuster pulled up a chair to join the circle formed by our family. We accepted him without question; this is the man who gave us the opportunity to fight when others thought it hopeless.

The MRI results show swelling in the area of the brain stem and this is most likely the cause of my mom's non-responsiveness. We took this information with a grain of salt, we had been warned that it was a possibility but had also been assured that it was easily controlled with steroids. The expression on Dr Schuster's face, however, did not sit quite as well as the mention of IRIS. He went on to explain to us that we cannot be sure if the inflammation is being caused by IRIS or by a worsening of the PML itself. My mom was given steroids that day and we would wait until Monday to see if she showed improvement that would lead her doctors to believe that she was suffering from IRIS and not a worsening of her disease. With tears in his eyes, Dr Schuster explained to us that if it was the disease my mom would be gone from us in the next few weeks.

My eyes searched the room until they met those of my sisters. It helped me push aside the horrible emptiness when I saw their eyes search for mine as well. I could see the pain and loss that we avoided talking about for these last few months. We all know where we stand with this illness and we always have, it is just difficult to hear it. And now, we wait and we wonder.

Will God really take our mom...

Gaining ground...

My mom received her second round of T cells on Friday. Her sister drove from Florida for her routine, biweekly visit and was pleasantly surprised to find out it was therapy time! When Deb walked into my mom’s room in ICU she started to mouth words to her and although we have no idea what she was trying to say but it was pretty damn exciting. My mom has not been able to speak to us for over 3 weeks and has not even tried for 2 weeks, so we were thrilled. Some days are easier than others and we need all the positive attitude we can muster. Because of her unyielding faith we have unofficially put Dana in charge of team moral. This has lead to matching T shirts that say TEAM BONNIE across the top with some boxing gloves stating BOOM BOOM POW, KNOCKING OUT PML! across the bottom. We cause quite a stir as we parade down the halls of HUP and people start cheering and giving us a thumbs up.

Our family continues to hope for the best and fear for my mom’s healthy homecoming when she kicks all of our asses for the measures we took to get her there! Dr Schuster has generously offered to be the first in line for a boot in the ass when mom is able to deliver. Dana laughed and told him that as my mom considers him God there is not much chance of him getting that size 7 in the backside but we appreciate the offer.

We have been experiencing some wonderful moments these days since the T cell therapy has begun. After the smiles we received that day after the initial therapy we have been seeing some great things from my mom. She has been moving her limbs on command and has been starting to move her mouth again. Her eyes are definitely focusing on each new visitor and she now turns her head if you speak from a different area of the room. These seem like pretty minor victories but if you saw the decline and knew what it felt like to think she wouldn’t make it the eleven days until the T cells were ready you would be celebrating along with us. Those were the worst moments of my life and I just hope we keep gaining ground from this point. Dr Schuster explained that there is one more treatment left before they perform a lumbar puncture to test for the level of the virus and after that they will monitor my mom for 72 hours before releasing her to the rehabilitation center of our choice. The idea of choosing a center is daunting after our experience with Good Sheppard but we have a better understanding of what we need. That experience, although horrifying, gave us the ability to trust our own instincts and not be afraid to expect the best when it comes to the care of our mom; there are places out there that can deliver.

My mom is now well enough to be released from ICU and we are now back on Rhoads 7. Dan is very happy with this development, in part because my mom is healthier but also because rooms in Rhoads have a cot and a shower for him to use! The waiting room on Rhoads is much more “user friendly” and is a few doors down from my mom’s new room. This lets us take turns sitting with my mom while others work, talk and watch TV. The only change from our previous visit to Rhoads is the need for protective gowns and gloves when entering my mom’s room. My mom is being treated for an infection in her bloodstream that has proven resistant to multiple antibiotics so the gowns are more for our protection than anything else. There is a huge bin of long-sleeve yellow hospital gowns and boxes of surgical gloves in all sizes outside my mom’s room. Each visit to my mom starts with a conversation yelled across the room as we suit up. Dana, our forever optimist, thinks it is quite entertaining and says it makes her feel like a doctor. I on the other hand could live without the static created by the removal of the gown. After each visit my clothes are clinging and my hair is standing up all over. Doctor—I don’t think so, more like Mr Hyde!

A smile is a gently curved line that sets a lot of things straight...

Since receiving the T cells 4 days ago, my mom's condition remained relatively unchanged. Some of her movements have increased but she still was unable to do simple things like keep her own tongue in her mouth and her eyes continued to hold a glazed, empty look and would roll back in her head the majority of the time. She developed a slight fever on Sunday and we took that as a good sign that the cells were working to some extent, but we were disappointed when we visited her Monday afternoon and found her to be unresponsive and fading in and out of awareness. It was a difficult day to say the least and had Dana and I driving home in silence, neither wanting to admit what we knew the other was thinking.

And then...

Dana, Chris and I walked into my mom's ICU room and were greeted by her eyes focused and tracking us through the doorway. She returned our smiles with one of her own. Her mouth was closed and we watched as the corners of her mouth curled into a gentle smile and she even managed to wiggle her nose! She was my mom again, her features became her own again and I saw the woman I have been missing for months. I have always heard people say that they could see a smile in a person's eyes but I never experienced it until tonight. Dana, Chris and I stood around the bed crying, smiling, laughing and just watching and enjoying the moment with our mom. She was focused and aware of us like she hasn't been in weeks and it was wonderful. Dan said he was so excited by the difference in her that he just wanted to go and run around the block (of course we stopped him as we were afraid he would get lost!).

The neurology team was in to see her and were impressed with the improvements they witnessed. They are setting up a visit for my mom with a speech consultant to help her communicate better. They have tools that will allow my mom to communicate more with her eyes through the use of messaging boards and similiar props. We hope this will lift her spirits a bit more and help her continue to gain ground.

I have no idea what tomorrow will bring, but today was fantastic!!!

Life is calling...

After months of missing my husband and children, hundreds of hours praying, countless silent meals shared with Dana in the HUP cafeteria and developing an addiction to Rolaid Soft Chews (I recommend the tropical fruit flavor) we have reached our first positive milestone in the PML battle—T cells are ready!

We are 3 days ahead of schedule due to the excellent response of the cells, so hopes are extremely high as we all gather around my mom’s ICU bed to watch a small bag get hooked to the IV pole. To most people it is just another IV bag being added to the half dozen already on my mom’s IV pole, but to us it is monumental. That tiny bag of milky fluid holds the path of our future and lets us know that God is listening. Our prayers, along with those of so many others—family, friends, and sometimes complete strangers— have been answered. We have been given this moment to forget the horrors we have struggled through and focus on rebuilding. I watch Dana at my mom’s bedside and see her beautiful smile, the moment is fleeting but glorious all the same, before it fades and she lowers her head. I know in my heart that she has moved beyond the infusion of the cells and is starting to pray for their success and so I do the same. As we look to each other I can feel the connection of our thoughts, hopes and prayers and I am overwhelmed once again by Dana’s faith.

It will be at least 2 weeks before we witness any results from the T cells, two weeks of praying for success while blocking worries of adverse events. This treatment does not come without a price, side effects that make me wish for ignorance. Our worst fear would be that the cells do nothing and as I refuse to entertain that thought I will focus on our next greatest concern. Immune reconstitution inflammatory syndrome (IRIS) is a condition in which the immune system begins to recover, but then responds to anopportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.

My mom developed PML because for some reason her T cells were suppressed and her body’s normal response to fight the virus never stepped up. Not only does this make it more difficult to fight the infection; it may mean that a level of infection that would normally produce symptoms is instead undetected. By adding these stimulated T cells back to my mom’s immune system we are rapidly increasing her body’s reaction to the virus, a sudden increase in the inflammatory response produces nonspecific symptoms such as fever, and in some cases a worsening of damage to the infected tissue. We will need to worry about swelling of her brain caused by the attacking cells, if this happens she will be treated with corticosteroids to keep the inflammation under control. The only issue is that the T cells will be compromised by the corticosteroids and thus begins a scary balancing act. These are the fears we will live with for the next 2 weeks, but we won't dwell on them because that feels too much like admitting defeat.

During the cell infusion Dan, Dana, Chris and I stood around my mom's bed staring at her until Chris pointed out how much she hated to be stared at. We stepped aside to allow Dr Schuster and his team to stare at her instead! It was funny to see the doctors watching my mom, excited and anxious just like us. Dr Schuster admitted that he was afraid we wouldn't make it to this point and we could certainly relate. "This disease just started galloping" he said "I gave her the mefloquine, hell I threw the kitchen sink at her! Just to buy us some time." I guess it should have been scary to hear him admit that but for some reason it was comforting. For all his medical knowledge he was admitting that some things are just love. And we have love....and hope.

Strange as it may be, we are now praying for a fever...

Holding our own...

At 2pm Dana and I were stuck in traffic on our way to HUP. Dan had called 3 minutes earlier to let us know that they were beginning set up for my mom’s tracheotomy. As we stared at the traffic piled as far as the eye could see we both kept asking, “Since when do they do procedures on time?!”

After finding my mom extremely alert and responsive during his last visit, Dr Schuster felt a trach tube would be more comfortable for my mom compared to the ET tube she has been enduring. The idea of the trach tube did not sit well with me because I know there is quite a bit of pain for a couple days following the procedure but because it will be more comfortable in the long term it was agreed upon and Dan signed the consent form. A trach tube is not a pretty thing, but it removes the tube from my mom’s throat and the tape that is wound tightly about her face to hold it in place will be a thing of the past.

So far, each day of my mom’s illness has left us worse off than the previous and we are praying that after the cells are given back to her each day will leave us better than that before. With each medical choice that must be made, a new degree of separation is established. I cannot be of any help to Dan and my sisters if I let my emotions guide my decisions, I always need to pull back and research the next step, cold and practical. It is a painful place to be alone and I worry about what I will lose in my future if I can’t turn off that separation. Every choice made for my mom is based on the future, the belief that she will return to us from this hell she is going through. Despite the warnings people give us about false hope we continue to believe because one man gives us that luxury. Dr Schuster feels this disease can be stopped and that physical therapy will give back what my mom has lost. He has warned us that she will never be “normal” but that isn’t a popular adjective in our family anyway. She will still be the woman we love and respect, the woman who has been responsible for most of our greatest memories without even trying.

A couple hours in the ICU waiting room had Dana and I anxious and annoyed by the time we were told my mom was resting comfortably and we could see her. The sight before me had me wishing that I had accomplished one more degree of separation before I entered the room. The ET tube was gone but left behind a small cut where it had dug into my mom’s cheek. I tried to keep my eyes on her face, calm and lovely, but they inevitably strayed to the horror that is a trach tube. A small white tube pokes from an incision in her throat and attaches to the ventilator tubing until my mom comes out of sedation and begins breathing on her own once again. For the moment bright red blood oozes at the base of the tube where it will dry, dark and crusted. Each time my mom coughs or expels breath with any force it sends bloody mucus spraying from the tube. As I said, it’s not pretty, but the next day I would hear the sound of my mom’s own breath rushing through that tube and would find it quite beautiful.

Bring it...

I once read in a book somewhere that your soul chooses the path that your life will take before you are ever born to the earth. It went on to explain that your soul chooses the suffering because you have to experience everything in life to complete your soul. I guess in some strange way this thought brings me comfort. The fact that my mom always expressed a fear for a debilitating disease like PML makes me think it was almost inevitable that she would suffer it, like her soul chose this path to complete itself and learn another of life’s lessons.

These moments of my mom’s illness have taught me to appreciate what I have in my life, I have seen a different side of the people I love, a strength I didn’t know they had, a strength they probably didn’t know they had either. I always knew in my heart that I had some wonderful people around me, but I don't think you truly make that realization until you are faced with such an illness. I cried in the waiting room outside the ICU when Kelly sat across from Dan and thanked him. She wanted him to know how much she appreciated all that he was doing for my mom, all the care he is giving her. She told him that his actions showed her that he loved my mom more than any of us had ever realized and that he was a stronger person than anyone ever gave him credit for in his life. I watched Dan’s eyes fill as he told Kelly she didn’t have to thank him and Kelly answered simply “Yes. I do.” This illness has taught all of us not to hold things back, not to let a moment pass if you want something to be known. It was nice to be a part of that moment, to see that connection in our family and know that my mom will be happy to see we are holding together. I have always known that my mom is an amazing woman and that everything in her world revolved around her family, but I never realized how much until these moments. While we were talking to doctors and trying to decide how to save her life she was making sure we knew how to live ours without her.

My mom has had the breathing tube for 3 days now. She continues to breathe on her own and communicates with us by nodding her head, blinking her eyes or rolling them, depending on what the moment calls for, and squeezing our hands. Of course, when we told her my Aunt Cathy was waiting for her to get better to take her to Vegas she started moving her legs up and down. "Are you trying to leave, Mom?" Another nod of the head.

Although I realize it was taken as a life saving measure for my mom, I still feel a great deal of guilt regarding the intubation. I refuse to give up on my mom if there is still a chance that she can regain her life. I am not so naïve that I believe she will have the life she had before the onset of this illness and I am not so selfish that I would allow her to come back to a life that wasn’t worth living. I understand that some skills may never be returned to her but her mind is still working and that is the part that knows I love her. I miss my mom dearly and that makes me realize what I am willing to live without, but I also love her dearly and that makes me realize what she is willing to live without. My mom would never forgive me if I forced her to live a life without independence. So, once again, I am putting all my faith in a doctor, a man, who seems to understand that and still believes.

When I entered her room in ICU seeing that tube for the first time sent fear and sickness falling over me in waves. My mom looked so weak and small and I knew in my heart that these are the images that will haunt me for my lifetime, but I sat down beside her bed all the same because I know that she is judging how bad things are by the look in my eyes. I took her hand and said what came to mind, "I am so sorry for this." I said as a gestured toward that awful tube. "It is just so hard to stop fighting when it comes to you." She squeezed my hand despite the effort I know it took her and our eyes stayed locked together. I explained to her that I don’t want to live this life without her and begged her not to quit. She started moving her legs and I saw the strain in her face when she struggled to move her left arm that has lain useless by her side for weeks now. I would have thought the sight of the fingers on that hand curling slowly in and out were my imagination if it weren’t for my mom’s nurse. “My my, you are just raring for a fight, aren’t you, Miss Bonnie?” What more can I ask of her than to fight?

Please God, give us 7 days…

Not now, not like this...

Due to frequent aspiration my mom's physician felt it best to intubate to protect her airway. The tube was placed around 8:00 this evening and my mom is said to be doing well. She continues to breath on her own and the tube was placed simply as a protective measure. My mom will remain conscious during this time to ensure that she continues to breath on her own. The T cells that were harvested to fight the virus will not be ready for injection until April 12th, if my mom's respiratory system shuts down before that time her physician will not proceed with the therapy and my mom will be removed from life support.

Our family is praying for 11 days...