I thought I’d take a moment to talk about the disease that is affecting my mother. She has been diagnosed with primary brain cancer. Brain cancer affects approximately 15-20 out of every 100,000 people each year. About half of these cases are secondary (or metastatic)…meaning that the cancer starts somewhere else (breast, lung, liver, testicles) and spreads to the brain. The other half of the cases (about 2% of all cancer diagnoses each year) are like my mom – the cancer begins in the brain and does not metastasize anywhere else.

Of the primary brain tumors, there are several different kinds. The most common, affecting 2-3 out of every 100,000 people annually, is a glioblastoma multiforme, or GBM (about 23% of all primary brain cancers). This is my mom’s diagnosis. GBMs are always considered a “Stage IV” cancer (the worst stage) because they are aggressive and incurable. In fact, GBMs are the worst kind of tumors to have…they have the lowest survival rate of any type of brain tumor.

The standard treatment is to resect as much of the GBM via surgery as possible and to follow up with radiation and oral chemotherapy. The average life expectancy for a GBM is 3 months without any treatment (the time that already elapsed from when my mom became ill until now), and 12 months with treatment. The rates are higher if they are able to resect 90% or more of the tumor, or if it is a slower growing GBM. They were only able to resect 40-50% of my mother’s tumor, and they have determined it is highly “aggressive” or fast growing.

We have been told that you can never tell how a tumor will respond to treatment. Some slow-growing tumors that are small are very resistant, and others that are fast-growing and large can be more responsive to treatment. An individual’s body chemistry seems to have a lot to do with the reaction to treatment, and we have to hope my mom responds well to treatment. The goal is to kill off more cells, and try and limit this tumor’s ability to grow.

My mom has been asking some questions trying to learn more about this type of cancer. Today she asked how it happens. The doctor had told us that it is pretty random – that he believes that cells become damaged sometimes, and some people do not have the ability to “fix” their damaged cells, and that is what happens with primary brain cancer – the damaged cells multiply and become cancerous. We were told that GBMs are rarely genetic, and rarely strike twice in the same family.

My mother has asked us to look into getting brain cancer bracelets to symbolize our desire to fight this battle (think Lance Armstrong and his live strong bracelets). Grey ribbons are the symbol for brain cancer. Jen, my mother and I purchased bracelets with a grey ribbon to show our support for the fight ahead (and we also purchased those grey rubber bracelets to hand out to those who want to wear one in support of my mother).

In my research, I learned that May is brain cancer awareness month…ironic, isn’t it?

I just wanted to take a second to thank everyone for their warm and loving thoughts and comments. They have meant so much over the past week since this site was set up.

Please know that Jessica, Jeremy and Mickey have been sharing your comments with Debbie and they have been incredibly powerful in building her strength and her resolve to fight this terrible affliction.

This week has been a better week than expected, with more progress than we might have hoped just a week ago. That said, I have a terrible feeling that things will be getting worse before they will have a chance to get better. In order for all of us, especially Debbie, to fight through it, we will need your continued support.

Please keep the loving notes coming. If you are in a position where you can visit, please do. If you aren’t, please send extra notes of support and love. If you are a religous person, please send your prayers. We will all need all the help we can get in the upcoming weeks.

Again, thank you, thank you, thank you for all the great support!!! Please keep it coming!!!!!

With Love and Hope,
Elliot

Today was an important day…we helped change the policy at Hopkins and my mom got to see and spend time with her grandchildren! It was truly amazing to see their reunion, and I think it lifted all of our spirits just a little. What more can I ask for in a day?

I’m a little later than usual posting this…Maya just did not want to go to sleep. She kept crying every time I tried to put her to bed. She wanted to sit and cuddle and smile at me. I guess she had such a good day that she wasn’t ready for it to end.

My father called around 8:30 with his morning update…they had no news for us about the results of her doppler from the day before (checking for a blood clot in her arm), and they had no estimated time to move her to rehab. I knew immediately that it meant that they had found a clot in her arm and were delaying her transfer to rehab. After our typical morning routine, Elliot left today for a series of meetings, and I drove Megan and Micah to Kidville for Micah’s classes, then drove with Maya up to Hopkins. My sister-in-law, Jen, arrived about 40 minutes before me and went up to visit with my mom. After she got there, she called me to tell me that they did find a blood clot in mom’s arm, but they didn’t have much more information for us yet.

When I arrived at the hospital, Maya was hungry, so I took some time to nurse her while I waited for my cousin, Jill, to arrive and babysit. While I waited, I received a call from Shareen, the hospital administrator who was trying to help us arrange a visit for my mom with the children. She informed me that she had a meeting with the hospital board to try and pitch a major overhaul in the Johns Hopkins visitation (and children) policy, and she wanted to come meet with me after her meeting.

Jill showed up a few minutes later, which gave me a few hours to go spend with my mom. I joined Jen upstairs, and we kept mom company. Unfortunately, today she had a horrible roommate – she was yelling all kinds of crazy things (and asking everyone who entered the room if they believed in G-d), and she had an alarm on her to keep her from getting up, and the alarm was going off for about 3 hours straight. The noise was horrible!

My mom was doing well, but she seemed a bit sleepy today, and she was complaining of a headache and some pressure behind her eyes. I made sure to alert the doctors about her pain. While we were up there, we learned that the clot in her arm was “non-occlusive” (not blocking anything), and they were mostly just giving my mom blood thinners and monitoring her. They had approved her for rehab, but they needed to review a CT scan to confirm she was ready for rehab and wait for our insurance to approve the move. She had a short visit from her friends Zena and Steve, and then Jen left to go pick up the girls. As I was getting ready to leave, we were bombarded: 1) the nurse practitioner who never showed up yesterday arrived to talk to me about my mom’s diabetes management; 2) the physician’s assistant for the neurosurgery team arrived to talk to us about my mom’s clot; 3) the rehab team showed up to give us an update about my mom’s move; and 4) the hospital administrator and the nurse coordinator arrived to talk to me about the visitation policy. I felt like I was holding court – there was a line out the door of people waiting to talk to me, my cell phone was buzzing with calls and texts, and all my mom wanted to do was use the bathroom!

After I spoke to the nurse practitioner (who offered nothing useful about the diabetes management plan), and talked to the PA about my mom’s clot, and touched base with the rehab doctor, I finally had a chance to meet with the hospital administrator and the nurse coordinator. My conversation with them made my day! First, Shareen informed me that she pitched a new visitation policy to the board, and it was warmly received. Johns Hopkins should be instituting a new, child-friendly, patient-centric policy in the near future. Second, she reached out to the nurse coordinator, who agreed that we could bring the children up to visit my mother! She asked only that we take steps to reduce any noise/commotion both for my mom and for the other patients, and she asked us to make sure that the children did not sit or play on the floor. Third, Shareen told me that she also spoke to the rehab floor and got us permission to bring the children there. They also agreed that we could spend time together in the family lounge just outside the rehab unit (perhaps even eat meals together there), and they gave us permission to bring my mom downstairs to the cafeteria! We were thrilled…it was a complete reversal of everything we had been told the day before, and a major hurdle cleared for our family.

At this point, my mom was looking exhausted. I decided to head downstairs to give her a bit of a break and take a nap before the next wave of visitors arrived. I ran downstairs to nurse the baby and grab a quick bite with Jill. After Jill left, I returned to the lobby of the Meyer building and ran into my brother. We headed upstairs, and on the way we also ran into my dad and my mom’s friend Mona, who flew into town from Texas to come visit my mom. Naturally, I decided to test this new child-friendly policy out, and I brought Maya upstairs with me. I have to say, that was the best…my mom lit up with a huge grin. She chatted with the baby, and even got to hold her for a few minutes. Check out the photo gallery – we uploaded a few pictures there.

As Maya got fussy and my mom seemed so tired, I decided to head back down and take another break. I left Jeremy, my dad and Mona to spend more time with my mom while I headed back downstairs. I called Elliot and he decided to bring Micah up to visit with his Grammy, and then I coordinated with Jen to bring the girls in as well. We then learned that insurance had approved rehab for my mom, and we were waiting for them to finalize a few things before they moved her.

Elliot showed up around 5 and we brought Micah in to see my mother while Mona watched Maya. Once again, she was thrilled! A short while later, Jen arrived with Paige and Peyton, who were just as excited to see their Grammy as she was to see them. After a quick visit, we decided to take the kids over to the family lounge by the rehab unit where Mona sat with Maya while they did another chest xray to check the location of mom’s PICC line before moving her.

Around 6:30, mom finally made it over to the rehab unit. We brought all the kids in for another short visit, and then we left her to finish her dinner and settle in for the night. She was exhausted, but thrilled. She actually told me today that the past few days have been so much fun – she has loved seeing all of her friends again and spending time today with the grandchildren.

We ended our evening with a lovely dinner in the food court, and Mona and my dad left to go grab a…higher caliber feast. All I can say is that after a long battle with the Hopkins administration, I’m so relieved to know that if I need to bring Maya up to my mom’s room, I can, and that we can spend time as a family with the children while my mom is in rehab. I’m looking forward to keeping Maya out of the lobby!

Tomorrow will hopefully be another good day…Mona will be with us until Tuesday, we are expecting more visitors at the hospital throughout the weekend, my mom will begin her therapy, and this weekend my cousin Trenna will be visiting, too. So…charging ahead, and hoping we can make things a little easier for my mom with rehab.

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: