Some days, I am finding it hard to sit down and write these updates. My mom looked great today – the swelling in her eyes has gone down, and she is very much herself. Check out the photos – I’ve added some new pictures of mom from the past few days. I called her early this morning to check on her, and she was in the middle of a visit with the daughter of her good friend. I told her what time I planned to arrive and gave her a message from my father, and she said she was looking forward to seeing me. Elliot and I arrived at the hospital around 11:30. On our way there, we coordinated the visits for the day – my mom’s friends Diane and Joey were coming to help out, and two of my mom’s co-workers (Pat and Bonnie) planned to come see us. On a side note…I wanted to thank those of you at the Montgomery College Library for your wonderful cards…we brought them to my mom today and she sat and read them all. She was quite touched, and so appreciative of all the love and support you have shown her.

When I arrived at the hospital, I was told that the nurse practitioner wanted to speak to me about the use of insulin. We got permission to take her off the floor today to go down to the cafeteria (and spend time with her grandchildren)…but, unfortunately, we were unable to get there. You see, they asked me to wait for the nurse practitioner, occupational therapy, and physical therapy before we went downstairs. I waited for the next 4 hours for them, and repeatedly asked what time we should expect them, but they never showed up. None of them. Not the nurse practitioner, not physical therapy, and not occupational therapy. I was really frustrated that we waited all day, that my mom was once again unable to enjoy a little bit of freedom and see her grandchildren. I was even more frustrated that my mom is not getting the therapy that they had prescribed.

I was just about to go ballistic when the doctor from the rehabilitation floor showed up…and informed us that they were hoping to move my mom to the rehab unit in the morning! That is amazing news, and it will ensure that she can start making some progress and getting the recommended therapy on a schedule. Unfortunately…when she moves to the rehab ward tomorrow, they will rescind the permission we just obtained, and she will NOT be permitted down to the cafeteria or anywhere else to visit with her grandchildren. I’m so frustrated by Hopkins!

Luckily, Elliot is a wonderful advocate. On one of his walks with Maya, he went on an excursion to find someone in patient relations to talk to about these limitations. We received a call this evening from a woman in patient relations who is about to make a presentation to the board tomorrow requesting a change in hospital policy to accommodate families in a more patient-centric approach to health care. She has promised to intervene and help us obtain permission for my mom to see the grandchildren, and she has asked me if I will share my story with the board to help illustrate the importance of family-friendly patient waiting areas. I guess that is something, right? Even if we cannot make our stay easier, I hope that we can make life easier for the next families visiting Hopkins. In the photos section, you’ll see a few pictures of us (and a few other families) waiting in the main lobby because there is no kid-friendly waiting area at Hopkins.

So…yet another positive update. Except things really aren’t that positive. We saw Dr. Olivi again today, and he said again how well my mom was progressing, and he promised he was doing everything in his power to get her to rehab at Hopkins so that they could start radiation as soon as possible. While he was talking to us, Elliot asked him if that now means that the prognosis was improving since we last spoke to him on Friday. He looked us straight in the eye…and said, “No.” To be clear, he still believes this tumor is aggressive and rapidly growing. He does not believe that the radiation and chemotherapy are going to be able to slow it down or stop it. He still believes that my mom is unlikely to live long enough to complete the full course of radiation – 6 weeks (and may not be healthy enough to even try to do the full treatment). He is doing everything in his power to try and give her time and quality…but he just thinks we are too late.

So, while I want to hold onto hope for a miracle, and while I love to report about good progress and signs of improvement…sometimes it hits me that all of this is likely just an exercise in futility, and the time we have left is short, and my mother is spending it in a hospital cut off from her grandchildren. I hope that Dr. Olivi is wrong…but the odds just aren’t in our favor. Just a reality check for all of us…progress is one thing, but the doctors see this as the “normal” progression of the cancer.

The good news for the day is mom is holding steady. She has been moved to a regular inpatient room, and they are working to move her to rehab. Previously, we hoped to bring her back down to Montgomery County for rehab, but because her stay in the hospital has been longer than anticipated, and because the cancer is more aggressive than expected, we are now trying to have her rehab at the hospital so we can start her radiation and chemo while she is doing her rehab.

Today was a quiet day in terms of visitors. Our cousin Jill came up to visit and help with the baby, and my father, brother, Elliot and I were all there for a few hours today. Elliot and I showed up first around 12:15 (we had to take Maya for her 2 month checkup – she did well, got 2 shots and an oral vaccine), and Jill came up to visit shortly thereafter. My father and then my brother arrived by 1:00. My mom was a lot of fun today – cracking jokes and acting just like herself. She kept telling me to keep Elliot away from her food (we joke about his capacity to eat everything in sight) because she was hungry. I love watching her “hassle” the nurses about giving her the shots and not letting her eat good food. We talked to the nurses about getting permission for her to see her grandchildren, and we are hoping that in the next day or two they will allow us to take her off the floor and to a location where we can bring the kids for a visit. I think that will do more for her than any medicine. She has been in great spirits, and is resolved to work hard to get better.

In the past 2 days, she has had physical therapy, occupational therapy and speech language pathology evaluations. All have concluded that she would benefit from rehab. Physically, she is weak on the left side of her body, and she has a problem called hemianopsia – it means she has lost the left half of her vision in both of her eyes. The combination of vision loss and weakness has been affecting her balance (it is also possible that the tumor affected other balance centers, but we are hopeful it is just due to the vision loss and weakness). She will need physical therapy to build up her strength and work on her balance.

Occupational therapy will help her with safety awareness and coping mechanisms for handling her vision loss and her weaker arm/leg. She may need to learn new techniques for opening things, and techniques to maximize the use of the good vision that she has. There may also be technologies that can help her cope.

Finally, speech language pathology has concluded that there are no issues with her speech…but she is facing some challenges with language and cognition. Sometimes, she is slow to recall the proper words for things. Her more complex cognitive functions are a bit slower – things like remembering multiple step directions or repeating items on a long list are a bit harder for her right now. Therapy should help rebuild and sharpen some of those connectors.

We’ve been told that right now, her brain is like a computer…when you have too many programs open, it can sometimes slow it down. We have been encouraged to limit the distractions when she is trying to focus – so if she is eating, turn the tv off or limit conversation. When she is talking to people, turn off the tv and try to limit side conversations. We are supposed to allow her to focus on one thing at a time so she can maximize her capacity.

So…one more hurdle cleared. Next step – building her strength up so she can handle chemo and radiation. Let’s hope she has enough time to get there.

On a side note, while I sit here trying to be positive…I’m still really ANGRY. I can’t stop thinking about all the “what-ifs.” My mom always tells me that the “what-ifs” can make you crazy, but…what-if? What-if Montgomery General had caught the tumor and we could have done this surgery and started chemo before she lost her ability to walk and see? What if 3 months ago, the cancer had not penetrated as much as her brain and surgery could have removed 90% of the tumor, making her eligible for the chemo wafers? What if we started attacking this tumor before it became so aggressive? What if catching it earlier couldn’t give her a single extra day of life, but it could have given us more time to enjoy the time she has left, or better quality of life? What if getting a diagnosis in May prevented her from thinking she was crazy for 3 months? Being sick without a diagnosis took a horrible toll on my mother, and she was frustrated that she couldn’t do anything about it. Every time I think about that, I get angry. Angry that Montgomery General released her without a diagnosis. Angry that the unexplained nausea did not trigger a CT scan sooner. Angry that the ophthalmologist who examined her eyes in June, and again in July and August didn’t recognize that the changes he was seeing were due to increased intra-cranial pressure and send her to a neurologist. Angry that no one picked up on her weakening left side. Why is it that these medical professionals missed it for so long? I have to think that catching it earlier could have given my mom more of a fighting chance – removing more surgically, taking advantage of the chemo wafer protocol, starting radiation and chemo before the tentacles of this tumor spread and burrowed deep into her brain…more.

As my mother always says, that and $.50 will get you nothing. But…what if?

Good news this morning…they are moving my mom up to a regular floor! Baby steps, right?

Once again, I’m lucky to be able to share that today was another good day for my mom. Her eye is looking much better and she was alert and talking all day today. Dr. Olivi is working to move her to a regular room for rehab and hopefully to start her radiation. They took her off her insulin drip today, inserted a PIC line and removed her central line all in anticipation of that move. Physical therapy and occupational therapy stopped by today to work with her, and they even had her standing up today! She will begin with a daily PT and OT schedule from here on out. All we need is for her sugars to stabilize and they should be transferring her!

We also had a few visitors today – my Dad’s cousin Marlene and my mom’s friends Diane and Joey. We spent the day rotating in and out of her room, and everyone took a shift watching Maya for us. Elliot and I had to leave around 4:00 today to get home to relieve our babysitter/nanny at 5:00. Today was Megan’s first day as our nanny (she has previously babysat for us, so Micah already knew her well), and she certainly experienced a bit of trial by fire. She arrived at 9:00 and we were in the midst of our Maryland Infants and Toddler’s evaluation for Maya (the good news is she qualified for services!). We immediately put her to work feeding Micah and dressing him, then sent them out the door in Micah’s stroller to “do something.” While they were out, we left for the hospital, and Megan had to figure out how to find everything in the house and manage Micah for the day. Luckily, she was wonderful…and she even emptied our dishwasher as an added bonus. I hope she can handle all this chaos, because we really need her right now.

I am doing my best to balance all of this new optimism with reality. Dr. Olivi still feels this tumor is extremely aggressive and they are working so hard to get her into rehab at the hospital and start the radiation as quickly as is feasible because of that.

That is it for today…relatively short and sweet. I’m a bit emotionally spent…I’m going to try and turn off my mind and “veg out” while I catch up on the DVR.

What a day! Today was a day filled with emotion…a visit from old friends, new milestones for my mom, and signs of improvement. It is hard to believe on a day like today that my mom could possibly be losing a battle with cancer.

We started our morning around 8:00 am when Micah woke up. Amazingly, Maya slept until 9:00 am – 12 hours! As I mentioned in my earlier post, I called my father first thing this morning and learned that my mom had been moved to the less intensive half of the intensive care unit. After dealing with breakfast and nursing and dressing the kids, the four of us headed out to Johns Hopkins to visit my mom.

Elliot dropped me off in front of the building to visit with my mom while he searched for street parking, loaded the kids into the stroller, and grabbed me breakfast. When I arrived, my sister-in-law Jen was already there giving my mom swabs for her mouth. They were just putting her into a chair, and I thought she looked even better than yesterday. They had given her a bath and cleaned off her hair, and her swollen and bruised eye was looking better today.

My mom was far more alert and talkative, and she seemed much more…herself. She was no longer accusing anyone of trying to kill her, and she was far more understanding about what was happening. They had reduced her saline from the 2% solution down to the normal .9% and they had reduced her dosage of steroids from 10 mg down to 6 mg. They did also add an IV insulin drip to try and regulate her sugars, and that was working wonderfully. Don’t get me wrong – she was still complaining loudly about the feeding tube and her sore throat, but today she understood why it was there and that it would remain there until she passed her swallow test. She was doing more to try and cope rather than fight with the tube.

My father arrived a bit later, and at first, the nurse was being strict and wouldn’t allow all of us in the room with her. My poor father was relegated to the waiting area. Determined to bend the rules, I made nice to the nurse and worked the guilt angle…and she finally agreed that my father could join us in the room, too, as long as we promised to behave and keep it down. I stayed with Jen, my dad and my mom for about 40 minutes or so. My father came downstairs with me to keep me company while I nursed the baby and ate my breakfast, which allowed Elliot a chance to spend some time with my mom. My brother arrived shortly thereafter.

And then the day kicked into high gear as the “Scranton troops” descended on Johns Hopkins. What is amazing to me is that my mom has a very large circle of friends that she has known since her childhood. Their friendship has lasted over 60 years, through thick and thin. Some years, they make it a point to get together frequently, and other times…well, years can pass and they don’t find the time to visit in person. In times like this, however, they show up. So today, my mom’s childhood friends Faye and Roz arrived with their husbands Barry and Jay from New Jersey, and Suzette and Joel came up (from Rockville) to meet them, and later on Sharon (from Baltimore) joined them.

It was quite emotional for me to see them all again, especially Faye and Barry. We used to visit with them a few times a year growing up, but it had been four years since we last saw them. Faye brought pictures of my mom from their childhood – including pictures of them in Canada one summer. I know how much that trip meant to my mom because she took us on the same trip for our family vacation in 1987 – one of our best family vacations. I remember her telling me some of her childhood memories from that trip, and it made the vacation even more special for me.

Jeremy, Elliot and I stayed downstairs with the kids and sent the “gang” upstairs with my father to see my mom, and Jen headed home to take care of her girls. About 15 minutes later, Arleen and Lorin arrived for a visit as well. They first spent some time entertaining my children before heading upstairs to visit, too. Over the next few hours, we rotated in and out of the room, visiting, chatting in the lobby, getting food at the food court – it really was a wonderful visit. At one point, someone came out to get me and said my mom needed me. I was a bit worried, so I dashed in there…only to learn that she wanted me to scratch her itchy head because she likes the way my fingernails feel! My mom was doing great – clear, sharp and strong. She was chatting up a storm, sharing memories, telling stories – it was great. At one point, Jeremy played a video message he recorded from Paige and Peyton, and my mom grinned from ear to ear! She was so excited that she was talking back to the video – I really hope we can set them up to Skype soon.

Elliot left around 3 to take Micah back home, and my friend Heather also arrived to watch Maya for me. Just as I thought things were going well…they got better. The Speech Language Pathologist FINALLY showed up to do my mom’s swallow test…and she PASSED!! To steal my brother’s facebook status, “I never thought I would be glad to say the phrase, ‘my mom swallows.’ Well guess what she does….and that means improvement.”

Faye and Barry, Roz and Jay, Suzette and Joel, Sharon and my brother all left while they were removing my mom’s feeding tube. Arleen and Lorin stuck around for a bit longer and we went back in to see my mom. She perked up ENORMOUSLY, and was so excited to drink water. They offered her graham crackers to eat, and my mom was in heaven!

While my mom was eating and drinking, we were watching some of the pictures on the digital picture frame my brother had put together. There were so many childhood photos there that involved Arleen and Lorin and their children Rayna and Stuart, which got us talking about the past. One of the pictures Lorin sent me one summer while I was at sleepaway camp – it was Rayna, Stuart and Jeremy acting out “Barzie and the Indians.” For those of you who do not know Lorin, Barzie was the name of his dog growing up. Thanks to Lorin’s amazing storytelling skills, Barzie sort of became…well, a folk legend. There was a Barzie story for everything…Barzie fought the Indians, Barzie put out fires, Barzie saved lives, Barzie had a bar mitzvah…it did not matter the situation, Lorin could create a Barzie store to match the event! As we discussed Barzie and the Indians, Lorin turned to ask my mom if she remembered Barzie stories. My mom deadpanned and looked right at Lorin and said “No.” I could see the concern flashing across Lorin’s face as she paused another moment before she said “I specifically asked the doctor to remove that portion of my brain.” We all had a good laugh, and smiled because it was just a perfect instance of my mother.

Lorin and Arleen left after that, and I went downstairs to nurse the baby while my father and my friend Heather took their turn to visit with my mother. Heather left a little after 5, and my father and I hung around to help my mother eat dinner and took turns watching the baby and visiting my mom. My mom asked me what was next, and I told her the goal was to get her strong enough to move to a regular floor, then off to Rehab and Radiation and Chemotherapy. She said she had heard that we moved, and expressed concern that we would do something drastic without consulting her. I told her that the only move that had happened was that she moved across the hall in the hospital, and I again reassured her that we would make no major decisions about anything without consulting with her. I pointed out to her that we’d been in the hospital all week that we couldn’t have moved even if we wanted to do so!

While I was up in the room with my mom, Dr. Olivi came by to see us. He said he was thrilled to hear that she passed her swallow test as he anticipated, and he asked how she felt to be eating again. He told her she was doing great, and mentioned that he was trying to arrange for her to start radiation while she was in Rehab. I noticed he had gotten a haircut (it was shaved close to his head), and he said yes, he did it because he wanted to look like my mother. Then he mentioned to her that he noticed she had a black eye and he was sorry about that. She quipped back that she gave him permission to operate, but didn’t remember anything about agreeing to the black eye. He immediately responded and said “Well, you wouldn’t listen to me so I had to hit you.” We all had a good chuckle, and then he left us so that my mother could eat dinner. Turned out, my mom did not need our help for dinner- she did just fine feeding herself.

My father and I said goodbye to her after dinner, and he drove Maya and me home. Another long and draining day, but filled with signs of hope and lots of love. It is days like today when I start to believe in miracles, and think that maybe the doctors are wrong and my mom is going to trounce this tumor. And then I worry that if me, the realist, is reaching for a miracle, my father must be on cloud 9 believing that the worst is behind us. We need more days like today…but it makes the days like Friday so much harder to handle. It is so difficult to find that balance between hope and realism, to embrace the joy while steeling ourselves against the pain to come.

And did I mention that I got my mom’s brisket recipe today? Another small victory.

Some more good news, we think. According to the nurses, they moved my mother over to the less intensive side of the ICU…just across the hallway, where the care ratio is 2 patients to 1 nurse. Hopefully, we’ll have another good day. For the second day in a row, in honor of my mother, I’ve put socks on Maya. She always complains to me that the baby’s feet must be cold whenever she is barefoot. My mother is always cold unless she has socks on, so it worries her that I would even think of taking the baby anywhere without a pair of socks. Normally, I’d roll my eyes and make a snarky comment, but I thought it was a small thing I could do to make my mother happy. So, mom, these socks are for you!

It has been a long time since I’ve posted…I have so many half-written posts that I don’t even know where to begin to catch everyone up. I wish I could say that I have a series of light-hearted stories I’ll be adding here in short order…but I’m just not ready to go back and post those yet. I will…in due time…but for now I’d like to say that my mother has been sick, and we’ve created a Caring Bridge site to provide updates on her health and document our journey. You can find it at:

I’m angry………I am angry about a lot of this shit to be perfectly frank. I am angry that no matter what the outcome is, I’ll never have my mother back the way I have known her all my life. I am angry that she’ll never know my kids the way I needed her to…they way THEY needed her to. But the funny thing about all of this is the fact that I am accepting of it. Not because I don’t want her to fight, quite the opposite. It’s more like I am accepting of it because it just further proves my assumptions over the years to be true. “God” doesn’t exist….never has. “God” shouldn’t do this to good people. I don’t want to hear the faith bullshit arguments, quite frankly anyone who feels that way is more than welcome to their beliefs, just keep it to yourself. I believe that my mother will one day return the universe in some capacity and I believe she will always be with me. You better believe that in times of crisis or joy, I’ll be thinking about her and what she would say, and I will need that. But right now….I am still fucking angry. I have seen the worst of the worst that this planet has to offer in regards to human beings and there are those that will live to be in their 90’s with absolutetely nothing to offer the planet, but you look at my mom……….the woman who sacrificed everything so this douche right here could have anything his spoiled ass desired……and she is going to have her life cut short. It just doesn’t seem fair. Well, it’s completely ironic that is was mom who always told me that “life isn’t fair….get used to it”

Inherintely, I don’t know that I have ever been a “good person” per se…but Mom made me one. She made me see the good in people when it probably wasn’t there, she made me rise above situations that I wanted to sink to the bottom of, she made me wear my heart on my sleeve when I wanted to bottle it up away from the world. See, it was mom who made me feel like I was worthwhile, it was mom who made me see the person I could be, the person I should be, rather than the person I was. IT was mom that made me the man I am today. Anyone who knows me knows I am tragically flawed….but regardless of these flaws, at my core, I am a loving/caring/compassionate individual. For that, I thank mom.

I think the thing that upsets me the most about all of this (aside from the obvious terrible sights and thoughts) is the fact that I know that I no longer need her. Let me clarify because it might not seem this way, but that is a giant compliment to both my mom and my dad. You see, as a parent, I think there is only a few things that you really need to do for a child–Love it, nurture it, teach it, feed it, etc etc etc….but in all of that, there is really only one end goal–To create a being that is capable of no longer needing you–to be a productive, caring, compassionate member of society. Well, mom and dad….you’ve done just that and to be honest, it makes me sad. It makes me sad because I know that I am going to be ok, I know that this too shall pass, and I know that, in reality, I don’t “need” her anymore. I just really really really want her. At some point in your life your parents stop being “parents” and become friends/confidants and that’s what mom has become to me. A friend, a valued confidant, and someone who is very much wanted in my life. But, I don’t know when….but I am going to lose that much sooner than I ever expected.

I get it……….I really do……….but I am NOT ok with it………and I am ANGRY at the fact that she has to face this. She deserves better, our family deserves better.

After all of the anger dissolves, and all of the despair retreats, I know all I will feel is emptiness, and at that moment, I will want all of that anger and despair back. Nothing is worse than feeling empty.

I love my mom and I am heartbroken that she has to take this on. I am heartbroken that for as much hope as I want to hold, I don’t kid myself into believing that a miracle is going to happen. I could be wrong, and I would love to be incorrect here, but I just don’t belie I am….and THAT, is more than upsetting, it’s downright terrible. That said, she still had the shitty attitude that I personally find loveable and one that helps explain me every day of my life. She’s still got her snarky commentary and I see glimpses of one of my favorite people still. I want to believe….I want so badly to believe…..but I can’t get my heart broken again, I don’t think I am strong enough to.

This sucks……..and I don’t know when (if at all) it will stop sucking. I miss her already, and she isn’t even gone. How terrible am I, don’t answer that because I already know.

I love you mom, and I promise I will never stop making your proud of me, no matter what. I am lucky for what we have shared, what we will hopefully still share, and the memories I will never allow to leave my mind and will hopefully share as lessons to my children and my nieces/nephews.

Today was a good day. Amazing to me, especially since I was up all night last night – I didn’t even attempt to lay down until 7:00 am. It has been a long time since I’ve been able to utter that phrase, but in the context of this nightmare, today was a good day. The kids woke up around 8:00 this morning, and I nursed the baby and we decided to bring Micah into the bed to cuddle a bit before breakfast. Micah loves to burrow into the bed and pull the pillow over his body and say “night night.” He snuggled in bed with us for a bit, and spent a ton of time pointing out our eyes, nose, ears, mouth, teeth…and then he discovered the baby. He spent the next few minutes poking her eyes out and trying to lay on top of her and give her a hug.

I called my father around 8 or 8:30 this morning to see how mom was doing and talk to him about the many adventures of Micah and Maya…they are always good for a smile. He said the nurses had told him Mom was more awake today and more verbal. Naturally, I was afraid to read too much into that because I hate disappointment.

In another comic moment, after the call with my father, I went to the bathroom…followed in, of course, by Micah. He watched intently as I went to the bathroom, and felt the need to announce “Mommy poo poo.” As I flushed the toilet, Micah made sure to clap his hands and say “Mommy yay.” I was grinning, and wanted to ask if I could get my gold star. Naturally, I called my father to share the story, and I could hear him smiling over the phone…a genuine smile amidst all this sadness.

Around 10 am, my friend Tami called to tell me that she and her mother were on their way over. I was quickly showering and we were working on getting the kids dressed while we fielded phone calls. They arrived shortly thereafter, and we sent Micah off to synagogue with Elliot, and then Tami and Bobbi took me and Maya up to the hospital to visit my mom. When we arrived, I decided to skip breakfast and go straight to the room, even though I knew Maya likely wanted to nurse a bit.

I got upstairs, and much to my surprise, my mom was awake and talking. She was speaking clearly and knew exactly who I was and where she was. Her right eye was very swollen and purple – looks like someone popped her one. I held her hand and asked how she was…and she told me she was dying. I was a little stunned, but did my best to reassure her. She then proceeded to ask me for help – she said the nurses were trying to kill her. I quickly realized that this was a side effect of the medications she was taking, but it was still worrisome to see. It actually reminded me of my grandmother when she was in the hospital.

My mom began complaining about the feeding tube they had put in through her nose…she said it was hurting her throat and choking her. I asked the nurse if they had tried her swallow test again this morning, and was informed that she had choked again. I tried explaining it to my mother, and she told me that I was trying to kill her, too. At that moment, I couldn’t help it…the tears and hurt welled up. While logically I understand that it was the medicine talking…it still hurt to hear my mother say I was trying to kill her. I calmed myself down while the nurses moved my mother from a bed to a chair and sat her up. My mom again called for me and asked me to help her because the nurses were trying to kill her.

I reminded her that the doctor had ordered the tube, at which point she said “Yes, Dr. Olivi – he was in earlier today, and I asked him to take out the tube and he didn’t help me either. He is trying to kill me, too.” It was with that sentence I felt some relief…because she remembered the doctor, recognized him, and knew he had been in to see her.

I then told my mom I would ask them to repeat the swallow test later, and when she heard me asking, she started to believe again that I was helping her. I called my dad and gave him an update to prepare him, and she asked him to come help her, too. I got some swabs for my mom, and began to swab her mouth. She thanked me and asked for a drink or ice chips. When that request was denied (by the nurse) she asked if the swabs could be cold, so I asked the nurse for a cup of ice water. I began dipping the swabs in the ice water, and she told me it was much better.

When the nurses were gone, my mother kept begging for ice chips. I remembered that when my grandmother was sick in January, my mom would sneak her tiny ice chips even when they had restricted her due to swallowing problems, so I felt I should try and do the same. I only gave her the tiniest of chips – not enough to cause any choking or aspiration, and it truly brought her some relief. She started to calm down as I stroked her arm and scratched her back.

By the time my brother arrived, she had stopped accusing everyone of trying to kill her. She was loudly complaining about the feeding tube and asking for it to be removed. When we explained that she failed her swallow test, she kept insisting she could swallow and would demonstrate it for us. She ordered me to get the nurse back in so she could prove she could swallow.

We began to talk to my mom about all the messages we’ve been receiving – in the mail, by text, on facebook, and here on this web site. My mom was touched, and she told us to thank everyone for their kindness. I told her about this web site, and we read her many of your messages of encouragement and love, and she was thrilled. She laughed at inside jokes…like her friend Faye’s reference to my mom being her “oldest” friend, and she appropriately responded and announced to us that Faye is 10 months older than her. It was wonderful. About half an hour after I told her about the web site, my mom turned to me and said “Hey, Jess, could you do me a favor? Could you post a message for me on that web site?” I started to well up, thinking my mom wanted to post a message expressing her gratitude and thanks for the outpouring of support. She looked at me and said “Can you tell them to come and check on me? Because they’re trying to kill me and no one is helping me.” I have to say, I laughed, because in the moment, I think she really did mean to express her gratitude and reach out to those around her…but it just kind of came out backwards because of all the meds. So, on behalf of my mother, I want to extend her gratitude and love for all of you and your kindness to us during this time.

I spent half the day trying to get her brisket recipe…she was quite suspicious of why me, her vegetarian daughter, wanted the recipe. I talked to her about her friends who were planning to visit the next day, and she said she was looking forward to it. She spoke to a few people on the phone as well.

We talked to her about passing the swallow study, and said it was important for them to understand that when she was coughing she was clearing her throat because of the tube irritation, not because she was choking. After that, EVERY time she cleared her throat, she announced “I’m not choking.” Except one time…when she announced “okay, so I choked a little.” It kind of reminded me when she tells me something (like I promise not to tickle your chin) and then she screams “I LIED” as she dives for my ticklish spot.

I saw the doctor briefly in the afternoon – he said he was amazed by the change in 24 hours, and he was encouraged that we could possibly stabilize her…for now. Nevertheless, it was a little glimmer of hope, and we needed to think we could have even just a little more time.

My mom accidentally knocked her feeding tube out in the late afternoon…while the down side was they needed to reinsert it, she was tube-free for about 3 hours, so it was a nice break for her. Tami and Bobbi watched Maya for me until about 3. They kept me company during lunch, and then said their goodbyes. Right around that time, my parents’ friends Gail and Steven arrived for a visit. They spent time with my mom, watched the baby, then took my father out to dinner. We decided to leave around 7 – my mom was getting sleepy, they were reinserting her tube, and we hoped she would have a comfortable night.

If she continues along this path, they may be able to move her to a regular neuro inpatient floor in a few days. They may even be able to get her to rehab. IF. So, let’s hope tomorrow is an even better day, and that IF happens.

So, tomorrow we will be there in the morning. We are expecting some of her “oldest” friends to come down for a visit, and one of my best friends, Heather, will be joining us to help out. In fact, I’m racing to type up this update before Heather arrives to give me a bit of a break tonight. If I have my glass of wine tonight, I’ll be drinking to more “good” days.