Drama…I think I’ve had more than enough drama to fill a lifetime! Overall, today was a good day. A LONG day, but a good day. After some difficulty putting Maya to bed last night (she wanted to stay awake until 9:45), all three of the children slept fairly well. Paige did not wake up when I tiptoed into bed at 3:45, but she scared me a few times over night. I am starting to think she might be a foreign national…she utters some sort of a slavic language in her sleep. She did startle herself awake momentarily after kicking me around 4:15, but she gave me a sly smile and went right back to sleep.

Maya woke us both up around 7:20 again, and I bribed Paige with television. We played Hannah Montana again (yes, I swore I’d never let her watch that again, but it was easier than arguing with her at 7:20 am) and an episode of Handy Manny before she announced she was too bored to stay in bed another moment.

At 8:30, I left Maya in bed and Paige and I came downstairs. I made Paige pancakes (again) and we sent Elliot upstairs to start getting ready. Right at 9:00, Micah woke up, and I started scurrying to get him ready for preschool. Megan arrived and helped us get everyone ready, and Elliot finally came downstairs with Maya and left for preschool with Micah. At 10:00, I left Maya with Megan and Paige and I walked a few blocks over to tour a rental house around the corner. It was definitely beautiful, but it was a tad bit smaller than I expected.

Paige and I made it back to the house quickly, and we had a little time to relax before Micah and Elliot came home. We called and spoke to Jen and learned that Peyton would probably be released from the hospital today. We actually put Paige on the phone with Peyton, and they were adorable talking to each other. My father arrived a few minutes later, and we left for Hopkins with Maya. Our trip was fairly easy today…my father napped a bit while I drove. We arrived at 12:45, just in time to help my mother with lunch.

Upon our arrival, we got our first bit of good news for the day…my mother had been accepted to Levindale, and insurance had agreed to pick up the entire tab! This news, however, was immediately followed by the first bit of drama…radiation oncology was running at least 2 hours behind and Levindale was uncertain if they could get my mother’s chemotherapy drug by tomorrow. We spent the afternoon waiting to learn whether we would be transported to Levindale today or tomorrow. My mother’s stomach seemed to be better, and we were able to pack up the room and relax for a little while. Donna was assigned to my mother again today, and she was a huge comfort all day as we waited and waited to learn our fate.

Around 3:45, my brother, Paige, Micah and Elliot all showed up in my mother’s room together for the official Paige swap. At some point htis afternoon, Peyton was released from the hospital, so Jeremy came to the hospital to pick up Paige for her first ballet class and to bring her back home. Paige had a quick little visit with my mother until hospital transport arrived. We all walked with my mom to radiation, but Paige and Jeremy said goodbye to us along the way. Micah loved having Paige around…as she left, he started to wave to her and say “bye bye, P.”

During the radiation appointment, we had a brief meeting with my mother’s doctors. They wanted an update about how she is doing, and we discussed how things would change moving forward. They told us we would need to keep a much closer eye on her now and give them updates if we notice any significant changes.

When we returned to my mom’s room, it was nearly 5:00. I sent Elliot and Micah home because Micah was getting restless and it was difficult to juggle his needs with everything else happening. Micah said “night night, mimi” before he left, and he blew my mom a kiss. That kid just keeps getting cuter! We heard rumblings about Mom’s release, but were surprised that they actually planned to discharge her so late at night.

We finally received confirmation that her ambulance transport would be coming around 6:00. We were disappointed because it is difficult to transfer into a new facility at night, but we were packed and ready to go. My mother’s dinner arrived at 5:30, and the ambulance drivers arrived shortly thereafter. It took a few minutes to get everything in order, and much of the staff lined up to say their goodbyes.

My father loaded up the car with my mom’s things, and I strapped Maya into the back seat. We decided that my father would travel in the ambulance with my mother and I would follow in my father’s car. It was 6:30 before we finally got on the road to Levindale.

There was traffic on our way, but we arrived at our exit for Levindale in decent time. As we were pulling off the exit, we had to swerve to miss a parked car and come to an abrupt stop. More drama! We looked around and noticed that there were police pulling in everywhere and blocking off the exit ramp while people from search and rescue were frantically running and looking over the edge of the exit ramp into the ravine below. It looked as if someone had jumped off the edge! We later learned that there had been a hit and run accident and the driver ran into the ravine and abandoned his car. The search and rescue team was conducting an all-out manhunt for the driver!

Unbelievable, right? We sat there for a long time, with traffic backing up onto the highway. Eventually the ambulance driver got permission for us to drive down the exit ramp and get back on the highway. We slowly navigated the complicated reversal, merged onto the highway and took it to the next exit. The driver took a complicated route down the backroads, and we arrived back to our goal location…only to find that it was still shut down. It took a while, but we successfully navigated the closure and made it to Levindale around 7:30.

Settling in was a bit complicated. Her nurse tonight was a man named Richard, and he seemed quite kind. My mother is in a shared room, and we quickly unpacked her things. Naturally, she needed to use the bathroom, but it took the staff a while to figure out if they could safely get her on a bedside commode. There was some confusion about her medications, and we had to sit down with the physician’s assistant and the nurses to talk them through everything. I swear they kept looking at me like I had three heads. The physician’s assistant was particularly worried about my mother’s insulin shots, and they seemed very concerned about maintaining her on those levels. They suggested that we request a GI consult and an Endocrinology consult in the morning. Once again, I was relieved that we were in a facility that made this possible. We were told that their wound care team would visit mom in the morning, and that she would be evaluated by their therapy team as well.

While we were there, we had to submit my mother’s power of attorney and advance health care directive. They asked us if we wanted to sign a “Do Not Resuscitate” form for my mother. We declined the DNR and marked her as “full code.” The physician’s assistant then went in to discuss the decision with my mother, and she agreed.

It was after 10:00 before we finally felt that things were settled and we could leave. We said good night to my mother and headed out the door. As we were exiting the parking lot, we stopped at a light. I noticed a few parked cars about 30 feet down on the right, and I glanced over, wondering if there was an accident. I saw some men yank something out of the car, and then there seemed to be a bit of commotion. As I looked closer, I realized that it was a man they had yanked out of a car, and there were several young men kicking and punching him. Yet more drama!!

My father and I were watching to see if there was anyone helping, and we realized all the cars were just driving past. I decided I would call the police, and I dialed 911. By the time she took my information and I reported the incident, the men had gotten back into the three cars and started to drive away. For a while, the man was rolling around on the ground. We were a bit afraid to go over and help him ourselves because everything was happening so fast. As I started to worry that we should go help the man out of the street, he stood up. I was on the phone with 911 the entire time, reporting what I saw. The man started to wobble a bit, and then he slowly started walking towards the Sinai emergency room. When our light finally turned green, we tried to follow him and see if he was okay, but he had disappeared. I hope he was okay and that it looked worse than it was.

After calling 911, we finally started our trip home. Maya screamed the entire way back and my father managed to take another short nap. Me? I cried most of the way home, too. I am frustrated…I am worried about whether this facility will be able to handle things, and I am worried that as we finally make some headway with my mother’s intestinal issues, the change of location will cause us to lose some ground. I am concerned about how the physician’s assistant changed her insulin order (without a doctor signing off on the change) and I think it will set off her sugar levels as well. I truly hate seeing my mother this…helpless. I think that might be the worst part – seeing my strong, independent mother so dependent on both our choices and the level of care provided in these facilities. The care ratio at the sub-acute facility just isn’t the same as she was getting at Hopkins. I don’t want her to have to endure one more minute of misery or fear if there is anything I can do to prevent that. Most of all, I hate leaving her at night. I really am ready to finish up this radiation so that we can have her home with us every night. I will feel better knowing she is safe in our house and not afraid.

I am also concerned about the “full code” they had us sign in addition to her advanced health care directive. One of the things they had us check was full respiratory code, which means that in a respiratory distress, they will take all measures to resuscitate her, including use of a ventilator. My concern is that my mother would not want to be on a ventilator unless it was just being used temporarily to get her through an episode. Her advance health care directive explains the circumstances under which a ventilator could be used, but the hospital form was a simple “yes” or “no,” and life just isn’t that simple. I think that we will need to discuss this issue again with her medical professionals tomorrow, and we may need to adjust the forms so that they understand the protocol.

I tried to discuss this with my father on the way home, but he wouldn’t talk to me. I think he just couldn’t process any more emotionally, but it left me feeling a bit…alone. We have so many tough choices that we are making, and so often I feel like I am the only one thinking through and making the decisions. My mother and I always worked as a team during the tough times, particularly when my grandmother was dying…we discussed options, talked about how each of the choices felt, reviewed the pros and cons, and we each expressed our opinions. Ultimately, when the decision was my mother’s to make, she made the final call and asked me to support her in the choice. It was always easy because I think we were of the same mind.

My father doesn’t work the same way as my mother. I know this, but I miss working in tandem with my mother. My father hates to think about these tough choices, and it starts to overwhelm him. I can never get him to discuss the options with me…he just says yes to whichever option I present first and quickly changes the topic or stops responding to me. Usually, he says “that is fine” before I even explain the option. Sometimes, I think if I told him we were planning to swing my mother from the rooftop as her treatment plan, he would say “that is fine.” He just wants someone to tell him what to do, he prefers to trust the professionals and not ask questions, and he often defers to me to make those calls. Sometimes, I wonder if I’m pushing too hard and I wonder if there is a better way to interact with my father. I know he feels a bit lost and overwhelmed right now, too, but it just always seems that he’d rather not think about it and I’d rather talk about it. I’ve also tried talking to my brother, but these issues are just…too much for him to face right now, and I understand that. Jeremy needs it to be someone else’s decision, and I know he also trusts what we are doing.

I guess I’m finding it hard to make those choices without my mom as my sounding board…and without the feedback from my father that someone else shares my perspective. Sometimes, I am so certain we are doing the right things and exactly as my mother would want, but then other times I second guess myself and wonder if I’m really sufficiently clear-headed to make all these choices, or if my mother would be making the same choices. I have tried to talk through the options with her, but she is quick to say that she trusts me and she is okay with whatever I suggest. I also think that discussing the choices is too much for her right now, too. I wish I was certain that my father felt comfortable with all of our choices. I do know that once we settled in to Levindale tonight and he got a better sense of the staffing and the layout, he said he felt that Levindale really was the better option, and that he was glad that we had pushed to make it happen. I am relieved about that.

So, thinking about things like the DNR really struck home again. My father and I did not get back to my house until after 11, and he never called (or emailed) to tell me he got home safely. Maya was a big crank, and it was midnight before she finally went down for the night. It was a long day and I’m exhausted. I hope my mother is fast asleep and doing well. I hope that my father is getting some sleep and can manage the drive to Levindale in the morning. I am thrilled that Peyton is out of the hospital, too.

What I’d really like to focus on is clearing off the DVR…there are dozens of shows I’ve been recording all week (and losing off the DVR because I never have time to watch anything other than Sesame Street and Word World with Micah). I wish my biggest decision tonight was whether to watch the season premiere of Brothers and Sisters or veg out to a little Big Bang Theory. Tomorrow, I am hoping to take Micah to his Kidville class and possibly get him a haircut. I will probably meet my parents at Hopkins for mom’s radiation treatment, then travel back to Levindale for the afternoon/evening shift.

When I was breastfeeding Micah, I learned to pump in the strangest locations…bathrooms, airports, and even in my car while driving. I used to worry that I’d be pulled over while pumping and driving, and I always wondered how I would explain THAT to a police officer.

Today, I learned that I can breastfeed in even stranger locations, including while walking from Radiation Oncology to the Rehab Unit at Hopkins. Yes, while walking…with my arm half asleep and my back aching, but walking nonetheless. I had my nursing cover on while I held Maya close and walked. And they say some people can’t chew gum and walk at the same time! Isn’t the saying “Necessity is the mother of invention?” I guess I just have to roll with the punches and so does Maya, but at least we both seem willing to make it work.

Last night (with 3 children under the age of 4) went surprisingly well…Paige, Maya and I shared a room, and all three of us managed to get some sleep. Paige and Maya went to bed around 9:30. Paige woke up briefly around 3:30 am when I went to bed, but she quietly called me a goofball and went back to sleep. I learned that my niece is a kicker – she likes to turn perpendicular on the bed and jab me with her feet all night while she mumbles in her sleep. It was kind of cute…except for that kicking part. Maya woke up a little after 7 and woke Paige up as well. I tried my best to convince Paige to fall back to sleep, but she was ready to go. I turned on the tv and let her watch Hannah Montana while Maya and I snoozed…except Paige kept asking me questions like “Where is Hannah Montana? Who is that? Why did she say that? When does she put the wig on? Why?” I resisted the urge to tell her it was a stupid concept and I had no idea why she puts on a wig and suddenly no one recognizes her, but I realized even that would be a futile discussion with a 4 year old. I have decided I will never put Hannah Montana on for her again – we’ll stick to Word World or Dora next time.

Around 7:45, Micah woke up. I was able to leave him in bed until almost 8 when Paige announced she was done watching tv and wanted to go get Micah. Paige, Maya and I went to get Micah. He was THRILLED to see Paige this morning – he started yelling “P” over and over again. We brought him downstairs, and I made Paige promise to jump on Uncle Elliot and wake him. I was amazed by how grown up Paige is…she took off her own pull-up diaper and threw it away and helped me get milk together for her and Micah. I decided to make apple pancakes for the kids for breakfast. Paige loved them…but I could not get Micah to eat anything for breakfast.

I made a few phone calls while the kids ate breakfast. I spoke to Arleen (I wanted to check on her mother, Della, and give her an update about Peyton and mom), arranged for Paige to attend Micah’s Kidville class, and I spoke to Jen to check on Peyton. Peyton is definitely improving, but she needed oxygen last night. If she can stay off of the oxygen tonight and they can safely switch her to nebulizer treatments every 4 hours, she will be released tomorrow. Otherwise, she could need another day in the hospital.

Megan arrived at 9:00, and she helped finish feeding Micah. I found 3 different outfits (with Paige’s help) for the kids and handed them off to Megan. While she dressed the kids, I took a quick shower and got ready. Elliot ran outside and did a little bit of musical car seats before he left for his meeting so we could manage for the day. Megan left with Micah and Paige around 10:00 to take them to a Kidville Little Maestros class. My father arrived around 10:15 and I drove the three of us (including Maya) in his car up to Hopkins.

We arrived fairly early at Hopkins and we found my mother in absolute agony again. We were waiting for the social worker to come see us to give us an update about my mom’s transfer today. As we were waiting, we talked to her nurse to see what we could do for her. After watching my mother’s discomfort continue, I asked to speak to the doctor. I again requested that something be done for my mother’s pain, and for once he seemed a bit sympathetic. Luckily, Dr. Olivi and his nurse, Dee, stopped by to check on mom, and when they heard about how much pain she was experiencing, they went and brainstormed a few ideas with Dr. Mayer. Dr. Olivi was quite funny…he has an Italian accent, and he poured it on thick as he said “while that is the opposite end from my area of expertise, I will do everything I can to try and fix the problem.” After a quick huddle with Dr. Olivi, Dr. Mayer decided to order a special topical pain reliever for my mom (and I cannot believe it took him two weeks to finally agree to do this for my mom).

Before mom’s lunch arrived, we managed to touch base with the social worker again. She said that there was a bed available at our #2 choice, and we were still waiting to hear about our #1 choice. She said she just did not know if we would be moving my mother today or tomorrow, but told us she would let us know later.

I just have to say, again, how wonderful the nursing staff at Hopkins has been. We’ve especially appreciated the extra mile a few of the nurses have given…Donna, Jeanette, Ed, Janell and Jen in particular. The other nurses have been wonderful, too, but we’ve just been so thankful for these nurses who have spent so much time getting to know us and make my mother’s stay at Hopkins more pleasant.

Today, our nurse was “Philadelphia” (my mom’s nickname for Jen, since she is from Philly and graduated from Temple like my mom). Even though she was not assigned to us, Donna also spent a ton of time helping out today, too. My mom always asks for Donna, even when another nurse has been assigned, and Donna has been so obliging – she always stops by and takes care of my mother. I think I will forever be grateful for the kindness she has shown my mom.

Philadelphia is about the sweetest person I’ve ever met…she is so kind and concerned, and always calls my mom “Mrs. Brodey,” no matter how often my mom tells Jen to call her Debbie. Philadelphia, however, does not always catch onto my mom’s sarcasm…yesterday, she was showing me how to give my mom a shot, and she told me to grab the “fatty part” of my mother’s thigh. In her most indignant voice, my mother says “Did you just tell me I have fat thighs?” Philadelphia turned bright red and started stammering and apologizing, and tried to explain that subcutaneous shots are delivered into areas with fat, and that everyone has a layer of fat under their skin, so when she said “fatty part” she was not trying to tell my mom that she had fat thighs…After a few minutes of the apologies from Jen, I had to put her out of her misery and explain that my mother was just teasing her (especially since my mom had a huge grin on her face and kept winking at me)! Jen is just too sweet to be tortured. Jen seemed to be working her tail off today between doing things for my mother and her other patients.

After lunch, transport actually arrived early, for once, and we still went late to radiation because we were not ready to go (Jen was running a bit late trying to get my mother’s insulin together and take care of a few other odds and ends). We also were still waiting on the special topical pain relief medication for my mom, and unfortunately it did not arrive before we had to leave. Radiation was quick – once again, we spent the greatest percentage of our time waiting for the return transport.

We had a chance to speak to the radiology nurse, Ron, and we discussed some of my mother’s recent symptoms. He indicated that they would probably maintain her current steroid dosage for the rest of radiation. My mother’s last day of radiation will be on October 14…the day before her 65th birthday. I think finishing radiation treatments would be a wonderful birthday gift!

We finally made it back to my mom’s room at 3:00, and we heard the nurses and doctors making preparations for my mother’s discharge. We were nervous because we did not like feeling so rushed to move her – we were afraid it would not give us enough time to make a smooth transition. Luckily, the social worker showed up and told us we had one more day of reprieve…they did not have all of the papers or prescriptions in order, and she was hopeful that tomorrow she might be able to get us a bed in our first choice facility. So, once again, tonight we wait. We expect to move my mother to a new place tomorrow after radiation – probably around 3 or 3:30. We hope we will be moving her to Levindale, but it could still be Brightwood.

Because of our anticipated move, my mother had no visitors today. She did make a few phone calls, however, and she was in good spirits late this afternoon. Apparently, the medicines they gave her relieved her pain and discomfort. My mom and I chatted a bit, and I realized that she had forgotten to tell me that her co-worker, Jo, came in for a visit yesterday. So, thank you, Jo, for stopping by – it meant a lot to my mother, and she was thinking of you today.

My father, Maya and I left for the day around 5:15, and we made incredible time driving back. Maya only screamed for 20 minutes of the trip – a significant improvement. I wish she did not hate driving in the car so much. I truly hope she outgrows this soon. I convinced my father to come inside and spend a bit of time with Micah and Paige and join us for dinner. Elliot had made dinner…just spaghetti…but we all sat down and ate together. It was nice to sit at a full dinner table. I have to say, having Paige join us for a few days has been kind of fun for me. She is so articulate and entertaining, and I love having an “older” child around the house.

My father left pretty quickly to get home and do some work. Micah and Paige played together for a few hours before bedtime. Micah was cute as he cuddled up with Paige on the couch while they watched some tv together while I nursed Maya. Elliot put Micah to bed around 8:30, and Paige and I entered into negotiations about bed time. I told Paige bedtime was after Micah went to sleep. She told me she wanted to stay awake “later.” I explained that it was later, and she disagreed. Maya fell asleep while nursing, so I told her that I wanted to take Maya upstairs. Thankfully, Paige wanted to join us, and I was able to get her into bed and put Maya down. Maya did not want to stay asleep, and after a few attempts, I brought Maya downstairs for another half an hour until she fell asleep. I brought Maya back up to the bedroom and found Paige sound asleep, sprawled across the bed. It looks like all three children may actually be asleep for the night. I hope they sleep through the night until morning!

Tomorrow morning, Micah has preschool and I am going to attempt to visit a rental house a few blocks away. My father and I will carpool up to Hopkins again tomorrow, and we hope to learn which of the two facilities have a bed available for my mother. We expect to be moving her mid-afternoon, and we hope the transfer will be quick and easy. Elliot will be driving up with Paige (and possibly Micah) in the late afternoon to bring her back to Baltimore for her dance class. If Peyton is released from the hospital, Paige will return home, but if Peyton needs to spend another night in the hospital, we will bring Paige back home with us.

I think I am surrounded by insanity, and I am starting to wonder if life will ever again return to a semblance of normal. Elliot’s Facebook status yesterday said it all (and perhaps some of you will appreciate the old tv show reference):

Dear Mr. Kotter:

Please excuse my son from school today. His grandmother has brain cancer. His Aunt had a stroke. His cousin has pneumonia and is in the hospital. His other Aunt’s brother had to put the dog to sleep. It has not been a good week.

Signed,

Epstein’s Mother

It just seems so ridiculous that all of this could be going on in our lives! Too much to possibly believe. My mother keeps telling us we should go buy lottery tickets with the way our odds have been running lately.

I’m not even sure exactly what time my day started today…I think the baby woke up early again (maybe around 7:30) and I went upstairs to nurse her and nap in bed (I know I was awake when she woke up). Micah, however, slept quite late…he did not stir until nearly 9:30! I realized that we had to get going quickly because we had Micah’s second swim class today. We decided it would be easiest for us to all go to swim class and then leave for the hospital. This week, Elliot attended class with Micah (while I spent the time nursing Maya and on the phone trying to figure out how all of our sick family members are doing). Micah seemed to have fun, but Elliot thought Micah did much better in class with me than with him. I may be doing the rest of the classes with Micah, but we’ll see.

After my 30 minutes on the phone, I learned that Peyton was being kept an additional day in the hospital for observation. The doctors were still sticking to their asthma diagnosis, but Jen was a little worried that after all of the medication, she was still not improving. I agreed with her, and I shared with Jen a discussion I had with my friend Tammy who is a thoracic (lung) surgeon in Miami. Tammy told me that it can take an extra day or two for pneumonia to show up on xrays, and that the shot of penicillin she had for the strep could also have confused the tests. She also said that Peyton could be reacting to the pneumonia before they can diagnose it, but that if the nebulizers alone weren’t helping, there was a good chance she had pneumonia brewing. Tammy had asked if they had done blood work and re-done the xray, so I suggested that Jen request the tests if Peyton was not improving.

I also told Jen that we could help out with Paige. Jen is a stay-at-home mom and my brother has to go to work on Monday. I knew that left Jen torn between staying with Peyton and taking care of Paige. I told Jen that I could either bring Megan and Micah to her house for the day to stay with Paige, or that we could bring Paige down to stay with us for a few days. She thanked me and said she would think about it.

Elliot, Micah, Maya and I arrived at the hospital around 12:45. We got a great parking spot on the street, and we went inside to help my mother with lunch. There were even a few extra items on the cart for us (thanks, again, to Patrice). Micah was kind of trouble – I can’t seem to keep him off the floor of my mother’s room. I took a bunch of Purell and a cloth and wiped the floor down as best I could…I hope that did something to keep him somewhat safe. Micah was fairly grumpy today. Every time one of us left his sight, he became hysterical. I think all of this leaving to spend time without him has given him separation anxiety.

All my mother wanted to do today was to “put her ears in” and sleep. I know she is exhausted, I just wish I knew if it had something to do with her reduced steroid dosage, increased brain swelling, radiation exhaustion, her cold, or depression. Some of those things we can help. Today was also a terrible day with her intestinal issues. I just wish they could figure out how to help my mother…she keeps telling me how miserable she is.

In the afternoon, Sheila, Les and Jenny arrived for a visit. Sheila made another beautiful hat (featured in today’s picture of the day) and an apple cake. We all enjoyed a bite of cake, too. Micah was not behaving too well – I think he became hysterical over everything. He wanted to drink from a water bottle, but got mad that the top was stuck. I opened it for him and he got upset because he did not open it himself. He wanted to eat cake, but it fell on the ground, and he did not want the replacement piece of cake. He dropped something on the floor, then screamed because he bumped his head and wanted mommy to kiss his boo-boo. It went on and on…the tears were a constant, as were the temper tantrums. He was probably being so awful because he missed his nap today…perhaps we won’t try that again.

After our visitors left, my father and I decided to run out to Levindale to check it out. My father was very out of sorts today. He wants to do what he can to make things better for mom, and he seems at a loss trying to figure that out. We talked again about how unfair this situation is, and about how awful it is to see mom uncomfortable, especially since it isn’t the cancer making her so miserable. When we arrived at Levindale, there was no one there to show us around. We did talk to a few family members of people who had been there, including one man whose wife had stayed at both Brightwood and Levindale. He seemed to think the staffing was better at Levindale, and that for people with medical issues, Levindale was better because there are doctors on staff. He felt Brightwood was beautiful, clean, and the rehab staff was good, but he did not think they were sufficiently staffed to handle his wife’s issues. They gave us a lot to think about, and we’ll have to finalize things in the morning.

When we returned to Hopkins, Micah was kind of a mess. We spent some more time with mom and started to pack up for the day. We finally talked to Jen and Jeremy again, and the doctors had finally determined that Peyton has pneumonia. She is on IV antibiotics, but will need to be in the hospital at least until Tuesday (possibly Wednesday). They asked if we would come and pick up Paige to come stay with us, and we agreed.

At 6:00, we drove out to Franklin Square, picked up Paige and then drove home. Maya screamed almost the entire ride home – poor Paige. She kept asking why Maya was upset, and did everything she could to calm her down (held her hand, sang to her…she was really cute). We arrived home around 8:15, and Micah was exhausted and went straight to bed. Paige asked to stay up a little longer, so we talked and played while I nursed Maya. Paige asked if she could sleep in our room, and we got her into her pajamas and set up a cot on the floor for her. Maya fell asleep, and I took Maya and Paige up to sleep. Unfortunately, Paige was too tall for the cot, so she is now tucked into our bed with Maya asleep next to her in the bassinet. I’ll go sleep up there with the girls tonight and Elliot will take the couch. Perhaps tomorrow night we’ll set up the air mattress on our floor.

Tomorrow will be a big day as we figure out how and where we will be moving my mother. We know that she will not be moved until after her radiation appointment at 1:45. I am still very nervous about this move…I just hope my mother can tolerate the transports and that they can handle her needs at the rehab facility. I’m quite worried about that, but I guess we’ll have to take it one day at a time, right?

Tonight, as I am sitting here trying to write, I am having trouble thinking over the sound of my pump. I’ve mentioned this on a previous blog (elsewhere), but my pump talks. We never have conversations…I’m actually quite aware that it is an inanimate object with no REAL ability to talk. But the hum of the motor…it sounds like the pump is talking. Usually, it just mocks me with its obnoxious attitude, calling me “Wacko” or telling me to “Let it go.” I’ve managed to reach a truce with the pump this time around. Mostly, I just ignore the mocking, and it works and actually produces a decent amount of milk.

While most of you are wondering whether you should call the authorities because I’ve finally cracked, I’m certain my mother will smile when I read this to her. I know this because the first time I ever blogged about a talking pump, she called me…to tell me that her printer talks to her. We were hysterical on the phone as we discussed our talking inanimate objects and compared crazy statements. My mother thought her printer said things like “beautiful,” and I asked her if her printer could teach my pump to get a better attitude. Even now, as I’m listening to it say “wonderful,” it is still copping an attitude with me…there is a definite sarcastic tone in there.

Today was an incredibly challenging day…and Maya’s 3 month “birthday.” I cannot believe she is already 3 months old…or that she has spent the majority of her life in a hospital. Twenty years from now, when she announces that she plans to become a doctor, I’ll know it is because she feels most comfortable in a hospital after spending most of her time there the first months of her life. I need to work on giving Maya more floor time…hard to do at a hospital. I try to put her on the bed with my mother for a little while each day, but she just isn’t getting enough time down to explore and play on her own during the day. She is thriving, despite all of her hospital time. She is a social butterfly, who smiles at everything. She can roll from belly to back, and I think she is already able to hold a sit for a few seconds at a time. I love how she coos and talks to me, and she is amazing at holding her head upright. We finally have her reflux under control, but we are still having issues with her sucking and swallowing. When she does lay on the ground, she kicks herself all around in circles. She is starting to put everything in her mouth, so she is usually a drooling mess.

Maya woke up at 7:45, and I brought her into bed to nurse. Micah was wide awake, too, and by 8:15, we decided to bring him into our room. He came running down the hallway and jumped into bed with his usual screams of “Mama” and “Daddy,” and he pulled all the pillows on top of him, proudly declaring “Night night.” As usual, he was adorable this morning. My mom called while we were all snuggling in bed, just to tell me that she was feeling much better this morning. I put on the speaker phone, and she had a chance to chat with Micah a bit. Unfortunately, Micah behaved like a typical toddler and became shy the minute the phone was near him – he did blow kisses and wave, but his words completely disappeared.

We took the morning a little slowly. Micah refused to eat his breakfast, and Maya fell asleep in the swing for about an hour or so. I spoke to my father, and we decided to drive up to Hopkins together today. We left our house around 11:30, picked my father up, and did not arrive at Hopkins until 12:45 or 1. All of us went up today…Micah, Maya, Elliot, me, and my father. When we got there, mom was finishing up her lunch…unfortunately, because we were not there, she had the wrong lunch (and was complaining that she did not like it). We need to get there a little earlier tomorrow to make sure she eats the right food.

Mom was thrilled to see Micah and spend a bit of time with him. We actually took him outside to the children’s playdeck, and he had a fabulous time. My mom had physical therapy shortly after we arrived, and she seemed very sleepy. She was flat again today…not smiling or talking much, and very uninterested in everything. All she kept asking was for me to “put her ears” in for her. I kept asking her if she wanted to unplug the ipod and talk to us, and she said no. After her physical therapy session, I asked her if she wanted to go outside to get some fresh air and see Micah playing on the playdeck. Again, my mother said no. I gave in and we returned her to her room. While she lay in bed, my father, Elliot, the kids and I were out on the playdeck for a bit. We returned to mom’s room, hoping to find her in a better mood after a rest…but no such luck.

We decided to leave early since mom did not seem interested in having company. It was 4:00, and we all drove next to visit Brightwood. The location was pretty, and the facility seemed nice, too. I met the staff in the physical therapy room and asked a bunch of questions. We also met the weekend charge nurse for the floor where my mother will likely be. I have to say, I am definitely a little concerned whether they are sufficiently staffed to assist my mother as much as she needs assisting. It seems to me that most of the people there need very little assistance, and I am concerned that my mother needs far more assistance than they are accustomed to giving. I guess we can always hire an additional aide for her, especially overnight, if she needs the additional help.

After our visit at Brightwood, we decided to drive up to Franklin Square Hospital to visit Peyton. She looked good, but was fairly sick of being at the hospital and taking breathing treatments. The latest is that they think this was an asthmatic episode (although I’m not certain they can rule out infection, either). They gave her a single dose shot of penicillin for her strep infection, but they have not given her any other antibiotics. She is still having nebulizer treatments every 2 hours, and needs to be at every 4 hours before they will release her. We’ll see how she does overnight and Sunday.

After our short visit with Peyton, we stopped at Panera for dinner. Once again, Micah decided not to eat anything. I do not think he ate anything all day. He refused breakfast, he refused lunch, and he refused dinner…he just would not eat today. We got back in the car and headed home. My dad napped a bit on the way, and I caught up with my other sister-in-law, Jodi, to find out how her visit with our sister-in-law, Jody, went (yes, I have 2 sisters-in-law with the same name…we call them Jodi “i” and Jody “y” to differentiate). We dropped my father off at 7:45, and made it back home a little after 8.

Elliot had just enough time to bring Micah over to the tail-end of our block party while I nursed Maya. Maya was hysterical – she screamed for almost an hour on the way home, and by the time I got her inside, she was inconsolable. She was hiccuping and choking and being quite the drama queen. She was too upset to even nurse! I finally put her on my shoulder, walked with her, and soothed her with some songs, and when she finally calmed down a bit, I was able to nurse her. I think she had those leftover post-hysteria hiccups for another hour or so. She finally crashed around 9:30, and we moved her upstairs to her bassinet by 9:45. Elliot and I watched some television before I crashed for a few hours.

I hope that tomorrow is better for my mother…I hope that she has some of her spunk and humor again, and that she is able to find the drive to build her strength. Right now, she has no energy, and it is frustrating. It is frustrating because I know she has the strength to fight harder, and I know she could be making bigger strides in her physical recovery if she could find the energy. Her physical well-being is critical to how she can enjoy whatever time she has left. If she wants to try and travel, or spend time with her grandchildren, or go out to dinner, she has to be able to sit in her chair for several hours at a time.

I wish I knew whether her current state of tired was depression, radiation exhaustion, or just actual physical inability to tolerate activity anymore. I wish I knew what she really should be capable of doing, so that I know how hard we should be pushing. Everyone says that the left-side “neglect” is her biggest issue…her brain has just forgotten the left side of her body. If we could teach her brain to pay attention, she is strong enough (and has enough control) that she would be able to walk and stand. BUT, the biggest component in overcoming neglect is personal awareness, and my mother just isn’t interested in paying attention to the left side of her body right now, and that is her biggest barrier to progress. I guess I just have to be patient and see where this journey takes us…and I’m even less patient than my mother.

Every day, my mother has been asking me how she is going to live without our faces, especially the children. She seems to be thinking about death as banishment…being sent away from us, aware, alone, scared and far away, buried under ground. She worries about how she is going to live when she is buried…she is concerned about being cold, animals getting in, bringing pictures of the family, etc. Part of our discussion each day always includes a list of things she needs to “take with her.” – Yesterday, she wanted to bring the ipod – wouldn’t Steve Jobs be thrilled? Today’s item was her cell phone (and her charger). She wants to be able to call us if she is scared or lonely.

I think what she means when she asks me how she is going to live without our faces is how can she possibly leave us? I keep telling her that she doesn’t have to live without our faces, and I keep telling her not to go anywhere. Each time, I can only think “No, mom, the real question is how are we supposed to live without YOUR face in our lives?” Some days, like today, she talks as if death is already here, or that she has an upcoming expiration date. I keep trying to explain that there is more time, but sometimes, just sometimes, the thought creeps into my head that perhaps she knows something I do not. I hope it is just her fear of the future and what it will bring, and that we can work on assuaging that fear.

This morning, Maya woke up at 6:00 am…a rarity for her! The good news is, she slept through the night, so I’m guessing she is feeling some better. Elliot thinks she might have sneezed herself awake…I bet that would have been cute to watch! Elliot got himself up and out early today to attend a conference up in Baltimore. My mom also called around 7:00 or so to tell me that she was miserable – I felt awful that I couldn’t help her. Her nurse came in, so our conversation was brief.

Maya fell back asleep nursing, and I kept Micah in his crib until 8:15. At that point, he was getting really loud, so I decided to let the baby sleep and take him downstairs to give him his bottle and start breakfast. Once Micah realized that Elliot had already left for the day, he started to melt down again. The only thing that worked was to turn on Elmo for him.

Our babysitter, Christin, arrived today, right at 9:00. She was able to take over with Micah, but he was definitely grumpy today. At 9:30, the baby woke up, so I brought her downstairs to nurse. Christin helped me juggle the children, get them dressed and fed, and gave me a break so that I could also hop in the shower. We left the house a few minutes before 11 so that I could drive Micah and Christin to Kidville for a makeup class for Micah. Unfortunately, dropping them off might not have been the best idea…Micah started to scream when Christin was putting him into the stroller. I am amazed that no one tried to stop her and accuse her of kidnapping with the fit he pitched!

As I drove up to Hopkins, I received another call from my mother. She was again quite upset and told me that she was miserable both from the cold and the intestinal pain. She told me she just needed to talk, so I chatted with her a bit while I drove, and explained that I was already in the car and would be there with her before lunch. My mom seemed relieved to know that I was on my way, and she again hung up when her nurse arrived.

I arrived at the hospital a little before noon (and no, I had no issues driving today). I forgot to mention that they finally re-arranged her room a few days ago. They turned her bed 90 degrees and pushed it up against the side wall so she can now face the door. She says she doesn’t notice the change, but I think she can see more of the room now and the people in it. Before, anyone who entered the room was in her blind spot, and it often made her nervous that people were coming and going and she could not see them.

When I first got to the hospital today, my mother was in her speech therapy session, but she was curled up on her side with her head buried in the pillows. She seemed very sleepy, but she was participating in her therapy. I stood quietly in the corner to avoid disrupting the session and nursed Maya. Just as she was finishing her therapy session, her lunch arrived.

I got Mom to sit up and eat her lunch, and she told me that Jen (my sister-in-law) had been by to visit her this morning. She said they had a nice visit, and she mentioned that she likes having the morning company. I don’t always remember to post when Jen stops by for a visit, but she has been great about stopping by in the mornings 1-2 times each week, and that means so much to my mom!

Some days, due to the steroids, my mother has a voracious appetite, and today was one of those days. When it kicks in, there is no slowing her down or convincing her to think things through so she can better use her left arm. Today she was very focused on eating her fruit and her ice cream, but because of the diabetes, we are supposed to make sure she eats the proteins first. My mother was never the most patient person, but what little patience she once had is now gone. She was grabbing at food and trying to eat and asking me about it before she was even sitting upright. I kept telling her we needed to sit her up and arrange the food, but all she kept asking about was her ice cream and fruit. She had hummus and pita, a shrimp tortilla wrap, fruit, and chocolate ice cream with chocolate sauce.

She seemed to enjoy her meal, but was having a bit of a struggle eating the chocolate ice cream. I tried to slow her down and get her to think about using her left hand to anchor the ice cream dish, but I could not even get her to put her spoon down for a second – she was hyper-focused on that ice cream! I think that they need to work with her on using her left arm during meals at a time when she isn’t going crazy for the ice cream.

Right after lunch, my father arrived – he had taken a trip up to Brightwood to check it out. He said it was nice and that he thought it would be a nice place. He was very…out of sorts…all day. He just seemed snappy and fidgety and upset, but I couldn’t get him to tell me what he was thinking and feeling. He kept getting defensive and telling me to leave him alone and that he was fine. I wish it was easier to get him to talk about his feelings…he was clearly upset today, and did not seem to be able to express it.

The three of us waited a little while longer for Mom’s transport to radiation. We had some visits from Donna (who was again assigned to another patient, but she kept coming by to help my mom out). Transport finally arrived (late again) and we headed downstairs, where Elliot joined us. For once, they took her back immediately after we arrived, and then we had to wait another 30 minutes for transport to arrive and return her to the room.

We returned around 3:00, and my mother seemed pretty sleepy. She was a bit cranky this afternoon, and kept wanting us to put her “ears” in (that is how she asks for her ipod). At 3:45, Molli from PT arrived to set her up in a better wheelchair and work on her strength. My mom went to PT and worked on pedaling (she is doing much better now) and standing. At 4:30, Molli returned mom to her room, and all she wanted to do was nap. Elliot left during Mom’s therapy session to try and get home for Micah and relieve the babysitter.

During my mom’s physical therapy session, my brother called. Apparently, my niece, Peyton, is sick and had to be taken to the hospital. As if he hasn’t spent enough time in the hospital lately. Add that to the list of bad Brodey karma, right? Peyton is doing well, and it looks like she might have an infection, but she may need to stay there for a few days (and it may prevent my brother from coming to see Mom for a few days). So, in case you were wondering, so far this week, my sister-in-law Jody (married to Elliot’s brother Daniel) had a stroke (I don’t think I’ve mentioned that yet…she is doing well and is now in rehab) and now Peyton is in the hospital – as my brother posted on his Facebook status, “the hits keep on rolling.” I think I’m afraid to ask what else can go wrong, so perhaps I should ask instead “Why us?”

Mom was pretty flat today…not so interested in chit-chatting or interacting. She seemed annoyed during therapy sessions (but participated), and all she wanted to do was listen to her ipod. The good news is that over the course of the day, her cold seemed to improve. She was barely coughing or sniffling by the end of the day, so I hope it means that her cold will be gone tomorrow.

Around 5:00, my mom’s visitors began to arrive. First, Diane and Joey came by to visit, and Suzette and Joel joined a half hour later. My mother ate dinner while they were visiting, but the entire time she kept asking me to turn on her ipod. I kept telling her that she should wait until everyone left to turn it on, but she kept getting annoyed at me.

They have repeatedly told us not to turn on too much stimulation at once for my mom…either the tv or conversation, only one conversation in the room at a time, ipod or visitors, etc. and we often forget that advice. Because it can increase her fatigue, I’ve been trying to control the over-stimulation while I’m in the room, especially when she is tired (not that anyone else cooperates). My Dad has a bad habit of talking to her while she is listening to me read her your posts, or dialing the phone and shoving it in her ear while she is trying to eat and have another conversation. Our guests often engage in side-conversations with me or my Dad, and Jeremy, Elliot and I are often guilty of that same mistake. In the end tonight, I gave in and turned my mother’s ipod on while her visitors were there. She seemed fairly uninterested in talking to anyone tonight, and I wonder what was going through her head…exhaustion, too many thoughts, sadness? I hope she was just tired and wanting to sleep.

With all the other bad things happening and seeing my mother down a bit today, I’ve been thinking again. For all these months that my mom has been ill, I’ve been feeling quite lost. Untethered, really, as if I am being tossed about at sea without an anchor, just managing to keep my head afloat. But from May until August, the one thing that got me through was the belief that my mom would get better soon, and I’d have my anchor back. Since we got our diagnosis of GBM, the realization that my anchor is forever lost has been devastating, and each day it hits me like a breaking wave, trying to pull me under.

I never thought that I would have to give birth to Maya without my mother there to whisper words of encouragement and wipe my brow as she did when I gave birth to Micah. I never thought I’d have to hear her crying over the phone while I was in labor, apologizing that she just couldn’t be there. I never thought that I’d spend my first week at home with two children without my mother there to help with the night shift, or take over a portion of the day shift so I could just nap. I never thought the one babysitter I would trust with my newborn child would be unavailable. I never thought that during such a rough adjustment period I would be spending all of my time running back and forth to the hospital worrying about her instead of selfishly having HER worrying about me and making my life easier. But most of all, I never thought this change was permanent.

When Micah was born, I was able to breastfeed him for 10 months because my mom came with me all over the country to work conferences to take care of him. I just assumed she would be there to do it all over again with Maya. I was able to go away to a work conference for 5 days when he was only 9 months old because she was able to watch him for me. And I never had a moment of worry, because I *knew* my mom would take care of him exactly as I would. I just always assumed that I’d have my mom to lean on for the next 20 years while I raised my children…and I always assumed that they would be up for the babysitting for at least another 10-15 years – heck, my grandparents were!

How am I supposed to go through life without my anchor? Even worse, how am I supposed to become an anchor for those around me? Some days, all I want to do is to curl up in bed with my mom at the hospital, have her stroke my hair, comfort me, and tell me this is all going to be okay. Because some days, it just doesn’t feel okay. Today, it doesn’t feel okay. Today, I miss my mom, even though I just spent the entire day with her. This is different than dealing with my grandmother’s dementia…I missed her for years because she was gone before she died. My mother isn’t lost, she is right here with us, personality and all…and yet, I still miss her. Or perhaps I just miss how she anchored me…is that something different?

Have you ever felt like crawling into bed, pulling the covers over your head, and staying there for three days? Or possibly a week? Or flying off to an island in the middle of nowhere to plant yourself on the beach for days at a time…no interruptions? I think I’d like a vacation from reality right now…no sickness, no Hopkins, no runny noses, no nursing, no schedule to keep, no one screaming Mommy or Jess – just for a few days. I’d like to watch some bad tv, read a stack of trashy novels, sink my feet into the sand, feel the ocean lapping at my feet and breathe the salty sea air…actually, I think I’d just love 24 hours responsibility-free.

Last night was a rough night…the baby woke up at 10, 12, 3, 4:30 and 7 because she was all congested and uncomfortable. At 7:11, my mom called! Unfortunately, the home phone in our bedroom was dead and we did not get to the other extension in time. I tried calling my mom a bunch of times, but she was not picking up. At 7:30, just after Maya fell back asleep, my mom called again. She wanted to let me know that she was doing okay (and that she was waiting for a nurse to arrive to help her with the commode). When the nurse arrived, I said goodbye and I hung up the phone.

At this point, Micah was wide awake, too, and my day began. I walked into Micah’s room and picked him up. He gave me a hard time changing his disgustingly dirty diaper, and then we went downstairs. I made him scrambled eggs for breakfast and gave him an English muffin with apple butter on it. Right as Megan arrived to help out, I heard the baby screaming upstairs. Elliot was STILL sound asleep with the baby screaming right next to him in bed. How is it possible to be that close to a baby and not hear anything? I brought Maya downstairs to nurse her and worked with Megan to get the children dressed (I put Maya in a cute little hat to match Grammy) and field a few phone calls and tried and plan the day.

Once Elliot finally made it downstairs, I took a quick shower and got myself ready, too. Elliot decided to stay home today and attend Sukkot services while I drove with Maya out to the hospital. My father had left for the hospital on the early side to attend a chemotherapy instruction class (I asked the doctor if the instructions included more than “take the anti-nausea pill an hour before taking the 4 chemo pills and take them the same time each day, about an hour before radiation” and he said it did not, so I decided to skip the morning class).

I have to tell you, it was one of those days…one of those days when my brain just did not seem to function in tandem with my body. Somehow, I managed to miss every exit on the highway. I felt like my Great Aunt Hilda, who used to follow all the lines on the side of the road off every exit and get herself terribly lost and then call my grandfather to come find her. I managed to drive right past the exit for 95N (and did not realize it until I saw signs for 50). I exited onto 50, and then had to take the next exit so that I could turn around and start heading back towards 95. I tried following a few signs that were posted to 95/495, but I guess I was confused because instead of going back to 95, I got off on 295. It was 10 minutes before I was sure if I was even headed in the right direction.

I called Jeremy to make sure I was on the right track, and he helped me figure out a route into town. I then managed to drive right by the exit I had planned to take into the city. Eventually, I ended up on Hanover street downtown…and missed two other turns while the GPS (yes, I got this lost even AFTER turning on the GPS) screamed at me. Finally, since I knew where I was, I turned off the GPS (hey, I just didn’t need a machine making me feel any more stupid than I already did!) and made my way to Hopkins…about 30 minutes longer than it should have taken me.

At least when I arrived at Hopkins, the garage was open, the security guard let me in, and my parents were in the room. Patrice, the wonderful woman from food services who helped us organize break fast (and who came upstairs yesterday to meet my mother in person – cannot remember if I shared that or not) sent me up a dish of macaroni and cheese to try! It was delicious, and probably the first time I had eaten lunch in weeks. She sent up 2 dishes, one intended for my mother. My mother was not in the mood to try the macaroni and cheese, so my father enjoyed lunch for a change, too.

Delicious was not feeling well today – I think all the congestion dripping from her nose to her belly today made her Little Miss Pukes-A-Lot (actually, I think she was Little Miss Pukes-AND-Poops-A-Lot, the Drama Queen today – and for the sake of Elliot’s dignity, I won’t explain how I’m also teasing him with that statement). Maya rarely ever spits up, but she puked 3 times today! The first time was all over me just after I ate lunch.

I can barely remember the sequence of the day, but my mom’s nurse, Donna, was back at work today…assigned to another patient, but she kept coming in to help out anyway (and she finally gave my mother that foot massage she promised her!). My mom’s nurse today was Ed – he has been wonderful to us, and he has a great sense of humor. My mother kept joking that Ed is like the guy walking behind the elephant in a circus parade…you know, the one who always gets stuck picking up all the shit? Yeah, somehow, Ed always seems to be the one called in as the 2nd to help my mom. Ed laughed, and my mom said that she had no choice but to find humor in the embarrassment or die from humiliation. Ed also kept teasing my mother back…he told her that today she was “dropping logs like a college boy, not girlie little pebbles.” Aren’t you now glad you got to share in our bathroom humor for the day?

My mother did much better with the commode today. The GI doctor came in early this morning – he did not really help much at all (I wish we had been there), but he did order no more disimpactions. I hope that we can keep things stable for my mother. At 1:45, we went down to radiation, which was relatively on time. It was transport that was the issue – we waited almost 45 minutes for them to show up to take my mother back to her room! Dad and I stayed downstairs to meet with the doctor’s chemotherapy nurse for a private tutoring session. The information was mostly a repeat of what we had already been told, but she was quite helpful and gave us the phone number to the oncology social work. She has some additional information regarding benefits and services that might be useful for us.

My father decided to go meet with the social worker, and I decided to head back to Mom’s room. The baby was super cranky and miserable, and I just couldn’t sit with her in another meeting. She seemed to calm down on the walk back, but she was on meltdown mode in my mom’s room. When I returned, Donna, my mom, Ed and I were all sitting in Mom’s room with the baby. Donna decided to hold Delicious for a bit…and naturally, Delicious puked all over her, too. Ed started gagging and ran out of the room like his you-know-what was on fire! I have never met a nurse so afraid of nursing and baby vomit! He is right…he may need a bit more time before he becomes a father, because his wife would kill him if he tried that move on his own baby! I told him that it is different when it is your own child, but he sort of had this phobic look on his face.

The rehab social worker came by to give us a list of nursing homes on our insurance plan, and we discussed which ones would have beds available. My father and I will go check out the places as soon as we receive confirmation about which ones are available. We are currently considering Brightwood, Roland Park, Bayview (on the Hopkins campus) and Levindale. The biggest challenge with Levindale is that it is not fully covered under our insurance policy, but we may be able to work something out IF they have a bed available. Bayview is probably not the nicest, but if they have a bed available, they would likely be the easiest because they are part of the Hopkins system (and transports would be internal – we would likely be able to do a stretcher transport).

Before I left for the day, Maya puked on my father, got hysterical a few more times, refused to nurse, and just general made life miserable for all of us. We spoke briefly with the rehab doctors and then I drove Maya home. Luckily, she was so tired that she fell asleep in the car. Elliot went to services while I managed the kids. Maya had a very cranky night, but finally fell asleep around 10. Hopefully, she’ll sleep better tonight.

Sick. Sick, sick, sick, sick, sick. We’re all sick. My mom, Micah, Maya and me – we ALL have a cold, and we’re pretty miserable. When I came home from Hopkins yesterday, I was concerned that Micah had a cold. When he woke up this morning (complete with a bloody nose), I was certain he was sick, which did not help his mood any. I knew I had a sore throat, and I was worried that I was coming down with something, too. I debated whether it was safe to visit Mom, and decided that I could put a face mask on and wash my hands frequently and it would be okay.

Megan arrived and we decided to keep Micah home from Kidville today because he was too sick and miserable. I tried reaching Mom’s insurance and had a work conference call (I still have one project going strong). Our family friend, Jill, stopped by with a lasagna for us for dinner, too. Added bonus – she helped change Maya’s diaper while I handled a few odds and ends. I finally left for the hospital with Maya around 11:15, and Micah through a total and complete fit, screaming “Mama, no go!” as I walked out the door. It is so hard to leave him behind when it makes him so sad. To make matters worse, Maya hates the car, so, per usual, she screamed the entire trip to Hopkins. I asked Elliot to stay behind today because Megan needed to leave a bit early, and I knew I would need to stay at the hospital late.

On my way up to Hopkins, the insurance coordinator called back. She was not particularly helpful today – she told me the decision was out of her hands and she would not be able to do much to help us. She did inform me that the insurance company and the doctors were scheduling a peer-to-peer conference to try and work out a solution.

When I arrived at the hospital, I checked in with the rehab doctors to learn more about the peer-to-peer conference. I also expressed my concern about the transport issue for my mother – whether she could be safely transported (and withstand the trip time-wise) in a wheelchair. The resident said she would check back with the attending physician and get back to me.

I stopped into Mom’s room, and immediately realized that she has a cold, too. I felt terrible for her – someone must have exposed us all to a cold at the same time since we all woke up sick today. Luckily, mom doesn’t seem terribly sick (or at least she did not seem that sick today). My cold has been progressing – my chest is definitely tight and congested.

I helped Mom finish her lunch, and we sat and talked for a bit until Dad showed up. We then went down to radiation around 1:45, and once again, Maya was a hit! Mom told me that it was so important to her that Delicious came to visit with her every day…she said that she wanted to soak up every minute she could with her. Everybody loves seeing Maya, and she gets so much attention from patients and nurses. I think Maya is getting spoiled! For once, radiation was relatively on time, and we were back up to the room by 2:30. The psychiatrist was present to help us have a family discussion, and Jeremy was just arriving. We also learned that her GI consult showed up…while we were at radiation. They informed us they would be back tomorrow, but we were frustrated that we had to wait yet another day.

The therapist was very kind…she let my mother lead the discussion about how she was feeling. We were all a bit emotional – my mom had a chance to express that she is worried about my father (and Jeremy and I chimed in on that point, too), and she shared with us some of her fears about death. Before we were able to get too far into the discussion, my mother’s stomach issues kicked into high gear – she was in too much pain to continue the discussion.

The therapist told us she would continue to come back over the next few days. We hope that the sessions are helpful to mom – she has so many things on her mind right now, and we all want her to maintain her good spirits.

Right after the therapy session, we got word that the social worker wanted to talk to us because she had an update from the insurance company. We were nervous…we were afraid that the insurance company was not going to extend her time. While we waited, we went with mom to physical therapy. She does seem to be making progress – she was standing and walking more, and she seems to stand more easily and stay up longer. She is still having issues with her left knee buckling when she stands and walks, but it does look like real progress. She is standing taller and straighter, and she is much steadier, too.

It took almost an hour before the social worker showed up, but she met with us after mom’s therapy…and told us that they agreed to extend her in rehab at the hospital until Sunday!! That gives us a number of days to identify a good rehab center with a bed available and work out the transport situation. I just hope mom can manage the transports back for radiation.

Such a relief for us! If Mom starts making more significant progress, there is a chance they could extend her stay longer, but for now, it looks like we will be moving her next week to another facility until the end of radiation.

After our meeting with the social worker, we went back in to mom’s room to share the news. Dad decided to head back home, and Jeremy and I stayed to help with dinner. Actually, Jeremy did most of the helping since I was nursing Maya and giving her reflux medication. Jeremy left towards the end of Mom’s meal, and I helped her with dessert. Mom was exhausted and needed to nap. I helped her get comfortable, then Maya and I left for the day.

The ride home was uneventful. I was back around 7:00 pm, but Elliot and Micah were not home yet – they had gone to synagogue for Sukkot services. They arrived home around 7:30, and Micah was thrilled to see me. We sat down and ate dinner together, and then spent some time playing with Micah after dinner.

He definitely has a cold, but the worst of it seems to have passed. His nose is a little less runny now, and he is practicing wiping his own nose! He went to bed a little after 8. I changed Maya into her pajamas and tried nursing her to sleep. At 9:00, she was out cold, so we took her upstairs to bed. Unfortunately, she woke up crying about 20 minutes later, and we had to bring her back downstairs. In fact, all night tonight, she has been cranky and waking up. I tried nursing her to sleep around 10, but she woke up at 12 again. I nursed her again and she went back to sleep, but she woke up again screaming at 3:00. I realized at 3:00 that she was stuffed up and uncomfortable – seems that Maya has a cold, too. We gave her some Tylenol, and we decided to put her on an incline sleeper in our bed for the night. Elliot and I took turns rocking her to sleep, and for now, she is snoring loudly on the bed. I used that blue nose bulb to try and relieve her congestion – she hates it *almost* as much as Micah.

I can hear Micah snoring over the monitor (and he has woken up with a cough a few times). My chest is killing me, too, but I’m not particularly congested. I’m hoping that we all start to feel better tomorrow, and that my mother’s cold is not nearly as bad as the kids seem to be.

Tomorrow I plan to head back up to Hopkins. My father and I may go check out a few facilities, too. We have been told to check out Roland Park and Brightwood. The other suggestions we have received are not covered by mom’s insurance, so we are still exploring other options. Hopefully, tomorrow we will all be feeling better. Okay – I’m headed back up to bed tonight…and hoping that Maya sleeps through the rest of the night.

I wish I could update everyone with the wonderful news of our successful battle…but that just isn’t the case. It has been a rough day, and I’m incredibly frustrated by the system right. I wish I could understand why insurance offers benefits that they make impossible to utilize?

Micah and Maya were in action at 8:15 this morning. At 9:00 am sharp, I called the insurance company to talk to our care coordinator, but she did not answer the phone. I left a message with my information, and hoped she would call back before our meeting.

Megan arrived and I took Micah to preschool. He did a little better today – he had a few attempts at pushing and screaming, but I was able to intervene and keep him from any major incidents. The “good” news is a few of the other children were doing the same thing, so Micah did not look like the trouble child. There is one parent, however, that has this way of watching me (and Micah) as if she is threatened by us. Micah pushed her daughter last week, and she has been giving me this “you are a parent of a horrible, uncontrolled child” kind of look. I have since decided that her child cries at everything, and seems to always get pushed by EVERYONE, and perhaps she is a bit of a drama queen. The only child who seemed to be upset, or pushed, or injured all day was her child. Coincidence?

Right after Micah’s class, Elliot and I took Maya and headed up to Hopkins. Even Delicious was armed for battle…complete in her Baby Armour outfit, courtesy of Under Armour. I passed my father on the way there, and we all arrived around the same time. During my car ride up, the insurance coordinator called on the phone. She went over our benefits, and said we have 60 days of rehabilitation coverage. She indicated that if the doctor recommended a longer stay, it would be covered. She also told us that we could take mom to a “sub-acute” rehab location, and that our insurance would cover transfers back for radiaiton treatment.

Many of you are probably wondering what the difference is between acute and sub-acute. I certainly was! An acute rehab facility is a higher standard of care than a sub-acute facility. It requires the following:

• treatment from a multidisciplinary team consisting of at least two therapies
• stable enough medically and is capable and willing to participate in intensive therapy for a minimum of three hours per day, at least five days per week
• program is expected to result in significant therapeutic improvement over a clearly defined period of time
• program is individualized and documentation outlines quantifiable, attainable treatment goals
• treatment is required in an inpatient facility because the individual requires: 1) 24-hour a day access to a registered nurse with specialized training in rehabilitation care; 2) frequent rehabilitation team assessment and intervention due to the potential risk of significant change in physical or medical status; and 3) an intensity, frequency and duration as to make it impractical for the individual to receive services in a less intense care setting.

Our problem appears to be that my mother has evidence in the record that she could not sustain the intense 3-hr a day therapy schedule, her progress is not considered significant, and the professionals have failed to indicate attainable goals for her.

A sub-acute facility, however, is more like a nursing home with therapy. Only 2 hours of therapy are required each day, and only steady progress towards those goals is required. When I arrived at the hospital, I ran into the resident on my way to my mother’s room. I talked to her about the situation, and she was thrilled to hear that we could take mom to a sub-acute rehabilitation facility, and felt that was a more appropriate option. I again explained that I felt another week or so at the acute level was warranted, especially now that she was making it through all of her therapy sessions each day and starting to make progress. She agreed, and went to talk to the rest of the team.

I helped my mother finish lunch and I read her the blog and your messages. My mom was so touched that her nurse had posted a message to her (and by the way, Donna, she keeps telling me that you owe her a foot massage). Our friend, Vivian, also arrived for a visit (she was at Hopkins for an appointment) and Elliot went to talk to her for a bit. I also received a message that our advocate would not be able to attend the meeting today – unfcortunate.

The team convened at 1:00 pm, and we heard their recommendations/explanations. I made our case for continued care at the acute level and discussed the importance of the proximity to the hospital at this point in my mother’s recovery. I understood from our meeting that the entire team was on board with getting another week for my mother and slowly working on identifying an appropriate transition to a sub-acute facility if this next week did not result in sufficient progress for her (or if she continued to find the 3 hours of therapy overwhelming).

The team, however, indicated that our insurance was the issue. We put their social worker in touch with our care coordinator at the insurance company, and then we waited. We waited for about four hours before they came back to us with an answer. We were down at radiation (which was quite late again), and I had just come out of the radiation room where my mother had asked me to come in with her and take a picture of her in her mask for you all to see. That is the picture of the day!

The social worker was sitting there in the waiting area, and she informed us that the insurance had denied the request to stay at the Hopkins rehab facility, but approved our request for a sub-acute rehab facility. She also told us that we needed to move mom in the morning! We were outraged…how can we possibly identify a new facility and move mom in less than 24 hours?

We got on the phone and started calling CIGNA, but the case manager has yet to call back. I will hopefully reach her in the morning. We have a list of sub-acute facilities, and we’ve received a few recommendations that we will check into. In the meantime, we intend to appeal the decision, and ask for more time to identify an appropriate location and create a transport plan. We are also going to make an argument that we need the extra time in the existing rehab facility to help my mother achieve some more goals…such as building sufficient strength to be transported back to the hospital for radiation by wheelchair.

So, we are seeking recommendations for a good nursing home/rehabilitation location close to Hopkins. My mother is not able to withstand a long transport at this time, and frankly, I’m not certain my family can handle the additional travel time either. Several of you have asked why not move her radiation treatment? Brain radiation is very specific…it is calibrated to a particular machine, the treatment plan is very specific, and it requires a special mask to be built. My mother would have to start radiation, build a new mask with far less sensitive equipment, and have the radiation done by people with much less expertise than Hopkins. Unlike radiation for some other types of cancer, the radiologist and the equipment truly do matter in the success of the treatment. Many other places would not even attempt radiation with my mother’s condition – it is just too advanced and too complicated.

So, today we return to battle – hopefully to secure another week to try and buy more time to build my mother’s strength to handle a stay at a sub-acute facility. We also have a GI consult today (and perhaps we can turn that into a new hospital stay and then she would be entitled to 2 more weeks after that stay in an acute rehabilitation facility). If we fail to win the appeal, we have to hope for 24-48 hours additional to effect the transfer to a sub-acute facility.

I am definitely worried about whether a sub-acute facility can handle my mother’s needs right now, and whether my mother is strong enough to handle the daily transport back to Hopkins for radiation. I wish there was an inpatient radiation option – my mother would certainly qualify. What a mess!

After fighting with the hospital and expressing our frustration to the doctors, I think we finally convinced the attending on the floor to go to battle for us for the next week. It may just be too little, too late, as the record they have created thus far has not been helpful. We arrived home well after 6:00…poor Megan! Miah was MISERABLE, he was cranking and crying, and just would not cooperate with her. To make matters worse, I think he has a cold – his nose was all stuffy and he sounded terrible. I don’t know how we can bring him to the hospital this weekend, but perhaps this cold will be short-lived.

We put the kids to bed, and my phone was ringing off the hook – thanks to all who called to give us some suggestions about facilities and find out how we are doing. We are frustrated, but hope today will give us better answers.

By training, I am a litigator. Before every court appearance or mediation, I used to mentally “arm” myself for battle. I would don my suit of armor by familiarizing myself with the facts, and fill my arsenal of weapons with arguments and legal supports. I would examine my suit of armor from the perspective of my opponents, scrutinizing my case for any chinks in the armor. I would consider how an opponent might deflect my weapon assaults, and deploy the best strategies to corner my opponents with the tools in my arsenal.

Tonight, I am preparing for battle again…but this time, I plan to battle the Rehabilitation Unit at Hopkins. We have a “family” meeting scheduled with the rehabilitation team for tomorrow at 1:00 pm to discuss my mother’s status in the unit. We have already been informed that they plan to recommend releasing her on Thursday morning – regardless of the fact that several therapists believe she has more room to progress, or that half of her rehab time was wasted on medical challenges, or that insurance is willing to pay for more time. We have already informed them that we plan to fight them. I get the sense that the doctor on the unit is of the mindset that “well, she is dying anyway, why bother with rehabilitation?” I have a call set up for tomorrow morning with my mother’s case manager at CIGNA, and we have recruited the help of a patient advocate from Hopkins. Wish us luck…this is one battle I do not want to lose, and I think they have no idea how tenacious and stubborn we Brodeys (and a particular Harkavy) can be when we are fighting for what we think is right.

Our day started off in the normal fashion…baby waking up around 8:20 (because my mom called just to say hello and the phone woke her up!) and Megan showing up at 9 and getting Micah out of bed. We got Micah ready quickly (he wouldn’t eat any breakfast) and off to Kidville they went to class. Elliot stayed home today because Megan needed to be out of here by 5, and I did not want to be rushed home.

I arrived at the hospital around 11:30 and my mom was finishing up her therapy. My father had arrived early that morning to meet with the social work and take care of a few odds and ends. My father and I both did some “lobbying” of the therapists to try and gauge whether they would recommend extending her rehab stay. I went to the last part of physical therapy with my mother, and she was really doing well. We worked on transfers, and I heard she did more walking and standing again today. She also worked on sitting up straight unsupported, and she was doing a fantastic job. She still needs more work on holding herself to midlline without listing to the left, but she has not been able to do hold herself that well since she arrived at Hopkins.

My mom made it back to her room around 12 and her stomach was hurting. I was impressed that she had been sitting in her wheelchair for over an hour and was still doing well. Unfortunately, she was again complaining of intestinal problems. All of the sudden, we realized it was 1:00 and my mom had not yet been picked up for radiation. We started to panic and run her down to radiation ourselves, but the nurse called down and learned that her appointment had been changed to 4:15.

At that time, we realized we had several hours left before radiation. My mother stayed in her wheelchair for another hour or so and then transferred back to the bed to relax for a while. Jeremy arrived around 3:00. My mother’s intestinal issues continued, and we asked to speak to the resident again. Initially, she seemed willing to help out. She went to speak to the attending physician, and he came into my mom’s room a few minutes later. He actually looked us in the eye and explained that my mom is not constipated, it was all in her head. My mom pointed out to him that, in fact, it was all in her ass, but he did not see the humor in the situation. He kept insisting that the problem was resolved and my mom was simply obsessing about her bowels for no good reason. We were pretty ticked at him, but he was quite convincing. Even Jeremy and I started to wonder if perhaps he was correct, but we still felt that they should be able to do something to relieve mom’s discomfort.

We realized that my mom’s ipod seems to have gone missing…either stolen or possibly thrown out by accident during one of the sheet changes. How unfortunate! We put them on the lookout for it, but I have a feeling it is long gone.

Dr. Olivi and his nurse, Dee, stopped by for a visit. We talked to them a bit about our rehab conundrum, and Dr. Olivi said he would put in a word recommending that my mother’s stay be extended since she lost a week with the brain swelling and intestinal issues. It is nice to know we have some champions.

At 4:15, it became evident that the hospital transport would not be arriving, so we walked mom down to radiation. When we got there, she was doubled over in pain, and the nurses there began to talk to her about her intestinal issues. They could not believe that the rehab doctor would not prescribe anything more than colace and senna for her. Their nurse coordinator decided to intervene by calling up to the rehab floor, and she said that they would call in different medication tomorrow if the doctor continued to refuse. At this point, Jeremy and I were fairly worked up and angry at the doctor – we just could not understand why they were not doing more. We will be asking what happened to the gastro consult we requested last week. Radiation was running way behind, and it was after 5 before they took her back. Thankfully, the appointment was fast, and about 7 minutes later, my mom was ready to head back to the room.

Dinner arrived as we returned, and my father got ready to leave. Dinner was chaotic – my mother started to eat before they took her blood sugar, and we could not get her to pay attention to what she was eating – she had ordered coconut shrimp, and she kept eating the shrimp tails and gagging on them, and she was not letting us remove the tails or help her out. Then the nurse arrived to try and take her blood sugar, and mom wouldn’t put down her fork to allow the nurse to do the stick. Her friends Roz and Sharon both called in the midst of the chaos, and mom took her bloody hand and tried to grab the phone. The nurse could not get a blood sugar reading and my mom was making a mess!! She then became confused about where the phone was (Jeremy was holding it up and mom seemed to think she had it in her hand). Unfortunately, we had to tell both of them that mom couldn’t talk – it was just too much commotion at once.

Jeremy stayed for most of dinner before he had to leave, and I left after she finished her dinner and returned the calls to Sharon and Roz. I arrived home to find that our cousin, Francine, had delivered ANOTHER dinner – the last one, I believe. Micah did a great job eating the food (although it was hard to tell if he was wearing more than he ate). I was starving and scarfed the food quickly. We played with the children for a while, bathed them both and put them to bed.

Ever since then, I’ve been preparing for battle tomorrow. Elliot reached out to the hospital advocate who helped us obtain permission to bring the children into the hospital, and she agreed to join us tomorrow as our patient advocate. My father sent me the information for the CIGNA case manager, and I will speak to her in the morning. I’ve also been planning out our arguments and trying to consider other alternatives if this does not work out for us.

We are starting to line up caretakers, and we *may* have a place lined up for Baltimore. We are working on identifying a wheelchair transport company. I may also see if, on Dr. Olivi’s recommendation, we could put mom in a different rehab, but we are not sure if we could transport her back to Hopkins for radiation. Hopefully, we’ll have a bit more time at Hopkins, but we’ll see what happens in the morning. Wish us luck! We need an army of supporters for this battle.

My father called tonight…apparently my mother is having serious problems with her intestines again, and needed to be disimpacted again. That rehab doctor is a complete idiot!! We’ll be battling with him, too, tomorrow.

Today was a good day for mom…but kind of a crappy day for me. Maya woke up at 7:00 (she broke out of her swaddle and got upset about it), so I brought her into bed with us. She immediately fell back asleep, and the children slept until nearly 9:30! I suddenly realized that Micah had his first swim class this morning, so we got ready and headed off to class. Elliot and I had planned to switch off in the pool with Micah so we could both enjoy the experience, but the instructors only allowed one of us to be present on the pool deck. Naturally, I asked to do class today with Micah (and promised Elliot could do next week). Micah was great! He was not afraid of the water, he played, he floated, he put his face in the water and he blew bubbles! He was adorable in class, and I think he loved the experience.

We came home from the pool, showered and grabbed lunch before heading up to the hospital. Traffic was heavy (probably due to the game), and I think it was a little after 2 before we arrived. My father was sitting with mom, and we joined her. She seemed to be feeling better today – her stomach issues seemed to be under control, her appetite had returned, and she just seemed a bit more relaxed. She had already done all of her therapy for the day and she was relaxing.

Mom enjoyed some time with Delicious and Micah, and we all floated in and out of her room, alternating chatting with her and giving her time to relax. Elliot discovered that the children’s building has a HUGE playground space outside just down the hall from where we’ve been visiting. We only wish we learned about it before our break fast celebration – the kids would have LOVED the playground. We are hoping to gain access to it another day when we bring the kids to the hospital. This afternoon, she had a group of visitors…Gail, Steven, Suellen and Greg! She had a wonderful visit with them – she was in great spirits, she smiled, she laughed, and she traded barbs with them.

At one point, we were talking, and Mom looked at me and said, “I’m not ready to leave.” I looked back and said, “Do you mean rehab?” She shook her head no. “Do you mean the hospital?” Again, she shook her head no and replied, “I mean all of this. I’m not ready to leave everything.” My eyes welled up as I realized what she was telling me, and I looked at her and said, “So don’t. Be one of those stories we hear about, and don’t go anywhere.”

The best news of today? The PT from today came by to talk to us, and she said that Mom did really well during physical therapy – she worked much longer, she stood up, she did a bunch of transfers, and she walked the bars a bunch of times. According to this therapist, she thinks Mom has a lot of strength on her left side and the ability to make much more progress! I was surprised, because she was the first person offering us some encouragement. I told her that I understood Mom would be released on Wednesday for lack of progress, and she was surprised. She was recommending that Mom’s stay be extended!

I asked her what she felt Mom should be able to do, and she said that she felt Mom should be able to walk *some* again (with assistance, but be able to walk within the house from point A to point B, or walk from a wheelchair to the car, or walk from the bathroom door to a toilet or a shower). She felt that mom should be strong enough to sit up and use a shower chair safely, too. I was THRILLED when I heard all of that – we had previously been told that all of those things were unlikely to happen. If Mom can accomplish those goals, it will be much easier for her to do things like travel.

Naturally, I asked this therapist to intervene with the other therapists and make her recommendations. If this trend continues the next day or two, we may be able to extend her stay for at least another week. My hope is to maximize the time she is in the hospital for radiation and chemo and get her as much therapy time as possible to make her as strong as possible. I know that home therapy is never as good as inpatient therapy, and the more things my mother can accomplish now while she is inpatient, the better for her in the long run.

We left the hospital around 6:00, and my Dad, Suellen, Gail, Greg and Steven were still there. They planned to go out to dinner together after Mom finished her dinner. We arrived home, and our friends Heather and Brad stopped by and brought dinner for the 4 of us. They stayed for a few hours to catch up, and we put the children to sleep. It was a lovely evening.

So, why was my day horrible? As I suspected, I am losing my business. I opened my email tonight to find a note from a client who just terminated my contract. I sent him a note 2 weeks ago telling him what was happening and asking for an extension of time to do a project. His response? Silence for the past two weeks, and a letter of termination today. Just as I was hopeful that I could start getting work done over the next week or two. And this was my most important client…without their support, I just don’t see how I can continue. I’ve been working with this client for almost 9 years now. Unbelievable.

Micah is screaming in his crib at 5:30 am…I need to go see if he is okay (or perhaps he’ll fall back to sleep on his own). So rare when he wakes up like this!