L’shana tovah umetukah…Have a good and sweet new year. Tonight marks the start of Rosh Hashana, the Jewish New Year. In accordance with tradition, this is the time of year when we reflect on our past year, seek forgiveness from those we have harmed, and seek absolution for sins we have committed against G-d. Perhaps I should take the time to say here that if I have wronged you this year, I am sorry for that. The Jewish New Year is the time when G-d inscribes us in the “Book of Life,” supposedly determining our fate for the upcoming year. One of the prayers we say explains it all:

On Rosh Hashanah it is inscribed,
And on Yom Kippur it is sealed.
How many shall pass away and how many shall be born,
Who shall live and who shall die,
Who shall reach the end of his days and who shall not,
Who shall perish by water and who by fire,
Who by sword and who by wild beast,
Who by famine and who by thirst,
Who by earthquake and who by plague,
Who by strangulation and who by stoning,
Who shall have rest and who shall wander,
Who shall be at peace and who shall be pursued,
Who shall be at rest and who shall be tormented,
Who shall be exalted and who shall be brought low,
Who shall become rich and who shall be impoverished.

I’ve been thinking about this since my mom got sick…who shall have cancer…it seems awful to me to think that last year, while G-d determined that Maya should be born, s/he also determined that Grammy and Nugget should die, and that my mom should be struck with this horrible disease. It also pains me to think that her fate for the year to come is to be written and sealed in the next 10 days.

While I strongly identify with Judaism, I would not say that I subscribe to all the tenets of our religion, or believe in G-d or traditions they way they are prescribed. I cannot say that I believe in predetermination, or that things are set in stone, or that G-d writes it and it is so. But I like to think that everything happens for a reason…not necessarily because there is someone up there directing and pulling the strings, but maybe more that there is an innate order or rationale behind the chaos of the universe. Maybe Elliot and I conceived Maya so quickly because she needed to be born so she could meet my mother. And maybe the reason our family has been touched by this horrible illness is so that we can be moved to DO something about it.

As I mentioned in an earlier post, we bought brain cancer bracelets. My mom, Jen and I bought matching bracelets that arrived yesterday, and we are now wearing them. A few of my mom’s friends also bought the same one to show their support for my mom. In addition, we purchased one hundred grey awareness rubber bracelets that we will be sharing with friends and family. My father, Elliot and my brother have all started to wear them. We invite any of you who want to show your support to take one of these bracelets we’ve purchased, and wear it, too.

But, simply wearing a bracelet is not nearly enough. Jeremy and I have both said that this is now an issue that is near and dear to our hearts, and for the rest of our lives we will dedicate ourselves to doing something about GBM. One of the things I would like to do is to create an organization around GBMs. I’m still formulating this in my head, but I would like to found an organization to fight GBMs, promote awareness, improve the opportunities for early diagnoses, increase research on cures for GBMs, and help families facing this horrible disease. If I think REALLY big, I’d love to one day be able to say that we helped do for GBMs what Susan Komen’s sister did for breast cancer. Perhaps I am thinking too big, but over the next months and years, I will be working towards that goal, and I am announcing it here so that I can be accountable for DOING something. I have to make sense out of all of this…there has to be a reason that this has happened to our family.

I’m going to try and keep the update short and sweet, but by now you must be familiar with my tendency to ramble. On the home front, Micah has been pretty darn cranky lately. I would like to blame teething…but I think he just misses having me around. I’m going to try and find more time over the next few days to shower him with lots of love and attention.

Maya, Elliot and I drove up to Hopkins around 10:15 this morning so that we could attend the meeting with the Rehabilitation team. My mom was…well, sleepy today. She was completely together, and willing to talk when addressed, but she spent most of the day laying in bed with her eyes closed. When we arrived at the hospital, she had just returned from her radiation planning MRI. We held the Rehab team meeting in her room, and well…it was not all that interesting or helpful.

Ultimately, the rehab team seemed to be telling us that my mother was progressing very slowly (perhaps too slowly) and they felt she was too tired to really fully take advantage of the rehab process. My mom doesn’t really seem to want to fight through the hard part of the therapy, particularly physical therapy. We may need to talk to her about that, and it may be that we need to get there earlier in the morning to attend PT with her and cheer her on a bit more (previously, they asked us to stay away). They said they would try to keep her in rehab for the full time of her authorization (through Sept. 23) but they made it clear that if she stops progressing or if she gets sleepier, they will terminate her stay in rehab. They continue to work on safe transfers, teaching my mom safety techniques, and building her strength. They would like to start working on training those of us who will be her caretakers on the proper techniques.

Another issue that came up was napping – they emphasized that my mom needs nap time each day to help her strength, and they gave us a hard time about failing to give her sufficient quiet time. I actually took umbrage at that statement…we are well aware of her need to nap, and we try very hard to give her sufficient breaks to nap. Unfortunately, they bring her food tray over an hour late each day, and the nurses will not allow her to nap until after lunch. Because lunch is always late, my mom seems to miss her nap because lunch runs into therapy time. Yesterday, I went to the nurse’s station to advocate about this. When I mentioned it today at the Rehab team meeting, the nurse manager actually got snarky with me and insisted that the food is never late. I was quite irritated with her, said it a number of times, and told her that they either needed to get the food to my mom on time or push her therapy back, or allow her to nap before lunch, because the only people interfering with my mom’s naps during the week are the nurses, and the doctors who show up unannounced for meetings during her nap time.

After fighting with me a bit during the meeting, the nurse manager did follow up and learn that, in fact, lunch time for the Rehab floor had been changed to 1:30-2:00. Once she realized that she was mistaken, she actively got involved today with changing lunch time back to 12:30 for the entire Rehab unit. So, once again, I’m glad I pushed.

My mom has been craving a corned beef sandwich for the past two days, so today, Elliot and my father went in search of one. Luckily, they scored big, and my mom got her corned beef sandwich for lunch. Next time, she wants it deli sliced, perhaps kosher (because the kosher corned beef tastes the best), and a side of cole slaw!

Here is where things get interesting. I should back up and say that on the Friday after my mom’s surgery, the day we were worried that my mom might not be able to get better, I went to the food court for lunch. I ordered a veggie burger from Flamers, went back to my seat, took a bite…and realized that it was a turkey burger. I was livid. I went back to the restaurant, told them of the mistake…and they laughed. The manager there was not helpful, and reluctantly agreed to give me a refund. He only wanted to give me a partial refund because I had eaten the fries before I discovered the issue (and he didn’t want to refund the tax or the cheese on the turkey burger). Ultimately, with the help of a security guard and some intervention from my friend Tami, I got my money back. When I shared the story with Elliot, he was pissed and wanted to talk to a manager about all of this.

Well, Elliot has been working the manager route, without much response. Today, he reached out to a colleague he knows at Sodexo, explained the story, and he decided to escalate the complaint. A district manager covering Hopkins found Elliot, and wanted to try and make it right for us. Elliot made it clear we were not looking for any free food, but we wanted the staff dealt with and possibly re-trained. The manager was quite insistent that he do something for us, so Elliot asked if there was any way they could address the lack of timely food delivery to my mother, and that because tonight was Rosh Hashana and she would be eating alone, he asked if they could do something a little nicer for her.

Much to our surprise, the VIP food service arrived in my mother’s room. It is a high-end, a la carte kitchen service, mostly reserved for the rich and the mighty at the hospital. Well, apparently my mother has been upgraded to the VIP food service for the duration of her stay (and for whatever meals we are present, they will give us food, too). Once again, Elliot has pulled off something incredible, and I hope that it makes my mom’s stay more comfortable. So, in honor of the high holy day, my mom dined on…crab cakes tonight. Yes, crab cakes (and for those who do not know why that is ironic, crab is considered “forbidden” food in Jewish tradition, so eating crab for dinner on the high holidays…is well pretty darn ridiculous). So, hopefully, based on the nurse manager’s efforts and Elliot’s connection, the Rehab unit will be fed in a timely manner from here on out.

The only other useful thing that happened at the meeting was our chat with the Rehab social worker. She told us about some temporary housing run by Hopkins for patients receiving treatment. It is right across from the cancer center. Elliot and my father walked over there today to check it out, and put our name on a wait list. If we can get in there, it might be a perfect option for us to stay while my mom completes radiation. Once we see how she is doing, we can then make arrangements for where to go after she is finished.

While my father and Elliot were out, my mom and I sat and talked. She snuggled with Maya a bit, and we just chatted about a wide range of things…knitting, projects, updates, funny stories about Micah. I read her much of yesterday’s blog post (I did some editing), and I read her all the many guestbook messages, emails, and texts we received. My mom keeps saying that I need to write her a list of all the people who have written and offered help so she can write thank you notes. I can’t even manage to write the thank you notes for all the gifts we got for Maya’s birth and baby naming, so I have to say I just don’t see how I’m going to help her write the notes she wants. So, if you are reading this, please know that we are thankful for your help.

Then my mom became very quiet. I asked her what was wrong, and she said she was thinking…about the future. When I asked her to elaborate, she said that the doctor in radiology told her she would need to take things one day at a time. And our conversation continued:

“This GBM I have…it seems everyone is saying it cannot be cured, right? So that means we are talking about living with cancer?”

“Yes, mom, that is exactly correct.”

“So, that means that sooner or later, this is likely to end my life.”

“You never know what can happen, Mom.”

“But the odds are….”

“Yes, Mom, the odds are that it will likely end your life, sooner or later, but hopefully much later.”

“So, I’m probably not going to get to see my girls wearing prom dresses like I always thought, huh?”

“You never know, Mom.”

“But the odds are…”

“Yes, Mom, the odds are that you won’t get to see them in prom dresses.”

“I really thought that I’d get to retire next year, and have good years with Dad to go and travel and do things…”

“I know, Mom. It just isn’t fair. But you never know what you will be able to do. Do you want me to be a bit more honest with you? Jeremy and I stayed and talked to Dr. Holdhoff, the oncologist, yesterday after you left the room. We asked some of these hard questions…can I share some of what he said to us?”

“Please.”

“Well, he said the next few weeks are critical. He thinks that if you can get through the next 4 weeks of radiation and chemotherapy, and if you respond as they are predicting, the oral chemotherapy you will continue over the next 6 months should be able to hold the growth of this tumor at bay. You will then stop the medicines, and he says there is usually a window, sometimes of a few months, sometimes much longer, when you are medicine-free and there is no tumor growth. That is often another 3+ months. They will monitor you, and when there are signs of growth, we determine the next steps. So, he thinks that if we get through the next 4 weeks, there is a good chance that the next 6-9 months will be good months.”

“But then there is quality of life to consider.”

“Yes, Mom, there is. According to the doctor, during the next 6-9 months, with the exception of some possible increased swelling short-term, and some exhaustion, the next 6-9 months would have you at least as good as you are now, possibly stronger. So, for now we are focusing on the next 4 weeks, and then we’ll focus on the 6-9 months after that and see where we are. Once we see how things go, then we’ll know what our options are beyond that. I also asked the doctor about traveling. He said that once radiation is done, the only travel restrictions you have are how you are feeling. So, if you want to go places, we’ll make it happen.”

“6-9 months like this or possibly better sounds like an okay next step. And I can wait to see what we do next when the time comes. Traveling like this will be a challenge…but maybe we can do it. I just worry about losing my independence, and how we will manage living.”

“I’ve been thinking about that, too. I’m worried about trying to bring you home to the house. You are not mobile right now, and if we bring you home to the house, I think it would mean having you live in a hospital bed in the middle of the room, with no access to a bathroom or a shower – just sponge baths. I keep thinking you would be happier in a rental house, where we can all live together, where you could have your own room, close the door, use the shower, have an area for visitors.”

“Well, I think that sounds like a much better option. I want to try and keep some shred of dignity and have some privacy. I also want to be with the family…I think we need to be together to get through this.”

“Well, it is also selfish for me, Mom. I want to have snippets of time in the evening with you, and I want to have those moments for you to watch Micah running around in a diaper with tupperware on his head.”

“I want that, too. Look, Tess, I trust you. We’ve had many of these talks when Grammy was dying, and I know we are on the same page with what I want, and I know you will make sure that happens. I think Jeremy is on board, too. I’m just worried about Dad…he doesn’t want to think about these things.”

“We’ll talk about this as a family, Mom, and we’ll figure it all out together.”

“That is what I want.”

“The doctor also told us that Hopkins has the best longer term survival rate in the country…they have about 60% 3-6 year survival rate. They also have many examples of people who do beat the odds and live long-term. You are a fighter, Mom.”

“I don’t feel like a fighter. I kind of feel like Nugget…you know, really brave on the leash. I’m not so brave off of my leash.”

“Well, then we’ll have to figure out how to keep you on that leash so you can always be brave.”

“Can I ask you another favor? Would you be upset if I took Nuggie with me?” [Nugget died in May, and I had her cremated, with some reservations on my part. I’ve been uncertain what to do with the ashes ever since, and my mom and I have discussed it many times.]

“Mom, that sounds perfect. When that time comes, hopefully way down the road, I’m going to send Nugget with you.”

“When you come to visit us, you’ll have to bring a stone and a bone.” [In Jewish tradition, you bring a stone to leave at the grave of a loved one]

“Exactly…just make sure you give Nugget the bone.”

My dad and Elliot returned, and we cut off the conversation. Elliot and I had to leave shortly thereafter at 2:30 and my mom went to therapy. My dad hung around with her for a bit, and we raced home to meet with the woman from the Maryland Infant and Toddler program. I have to say, I think the meeting was a waste of time…yet another person who doesn’t seem to know how to help us with Maya’s sucking problem. She suggested we try the suck training again, this time with a different pacifier. Here goes nothing!

My father joined us for dinner tonight. We ended up having some quiche, some pasta salad, and some leftover salad and cake from the meals that everyone has been bringing. Elliot left for synagogue around 7, and my Dad headed home. When Elliot returned, I took Maya out to go visit a friend of mine who had minor surgery today. It was a wonderful visit – we had a chance to vent and talk and just catch up – it was a perfect escape for me.

Tomorrow is our family Rosh Hashana dinner, and I’m looking forward to it. I hope this year, only good things will be inscribed in the Book of Life for our family and all those friends, families and colleagues who touch our lives.

My day started with the phone ringing at 8:00 am. I have to say, I can’t stand when the phone rings at off hours anymore…it makes my heart skip a beat as a wave of panic that something happened to my mom washes over me. I happened to be in bed asleep, lulled by the sounds of Maya sighing softly from the pack ‘n play and Micah snoring over the monitor echoing softly in the room. I jumped up and snatched the phone, whispering a brusque “Hello?” and hoping that the phone wouldn’t wake either of the children. Much to my annoyance, it was the woman from the Maryland Infant and Toddlers Program calling to postpone our appointment. She asked if I could meet with her on Thursday morning, and without thinking, I agreed. Naturally, the minute I realized it was Rosh Hashana, I had to call back and cancel.

Right at 8:30 on the dot, both of the kids woke up. My father called a few minutes later to tell us that my mom was doing well and the oncology team would be by to see my mother around 2:30. Once again, our babysitter arrived right on time at 9:00. While she helped feed Micah breakfast and keep an eye on Maya, it gave me time to shower and get dressed. While I was getting ready, we got a call from Sheila warning us that a gunman was on the loose in Bethesda. I was nervous, so I insisted that the babysitter stay inside with Micah until the police caught the gunman…which I think made for a challenging day for her. While we were getting ready this morning, I put a NY Mets baseball hat on Micah in preparation for his father/son Mets v. Nats baseball game with Elliot tonight. I put on the hat and said “Mets hat” and Micah looked at me, said “hat” and “mess.” Elliot got all excited that Micah was already saying Mets, but I think he was simply saying the word “mess.” Lately, I’ve been spending a lot of time telling Micah he is a mess (usually after every meal, I smile and tell him he is a big adorable mess). He smiles at me and always says “mess.” I think when I put on the hat and said Mets, he thought I was lovingly calling him a mess in his hat, too!

Elliot, Maya and I left for the hospital around 10:45, and got there before 12. I went in to see my mom while Elliot took Maya to the lounge and got on a conference call. My mom was in physical therapy, and when I arrived, she wanted me to see the photo they had taken during therapy, and asked me to re-post it here for all of you! Apparently, during therapy this morning, mom hung out with the therapy dog, Graffiti, a whippet. I think that made her day! I walked back to the room with her, and she wanted me to send an email to Sheila to thank her for the hat again. She had worn it the entire night, and was still sporting it all day today.

When I arrived at the hospital today, I learned that my mom needed a second platelet infusion last night. Her numbers were now stable – right at 2. For now, they will just keep monitoring her levels and hope that things hold steady.

I was amazed, but Maya slept for several hours at the hospital, which gave me a ton of time to sit with my mom. She was exhausted, and we were under strict instructions to give her lunch and then have her take a nap. Unfortunately, as has been happening every day, my mom’s lunch was over an hour late arriving, and the nurses would not put my mom in bed until after lunch. While we were waiting for the lunch to arrive, first my father showed up and then the radiology oncology team arrived. We were a bit surprised, because we were not expecting any meetings with doctors until 2:30 (and the nurses said the oncology team was actually not coming until 3:30).

Dr. Kumar was the lead doctor who came to see us, and he works directly with Dr. Kleinberg, the head of the radiology team. The radiologists were quite helpful. They did an exam of my mom, and explained the process for radiation. They told us that my mom was scheduled for an MRI on Tuesday, which would lay the foundation for the radiation treatment. They explained she would have to get a few tattoos on her body to help with alignment, and that she would have a special hat made to help direct the radiation treatments. Because her tumor so extensive and they will be radiating so much of the right half of her brain, she may not be able to do a full 6 week course of radiation (it may be shorter). Radiation will be 5 days a week, and they expect she should tolerate it well. The biggest side effect is hair loss.

My mom was a bit nervous and worried about the process, but she asked questions, expressed her fears, and then signed the consents. The doctors took a lot of time with us going over everything, and we also had an opportunity to ask if the tattoos were really necessary.

Finally, my mom’s lunch arrived and she was able to grab a quick bite before her next round of therapy. I went to speak to the nurse because I was concerned that my mom was missing her daily nap time because her lunch was late every day. I asked whether her lunch could be requested earlier, or if they could adjust her therapy schedule by working in a later lunch time for her. Thankfully, the team was so cooperative, and they have readjusted her therapy schedule to start her afternoon therapy an hour later each day.

We were finally able to get her a bit of a nap after her next therapy session and before our 3:30 appointment with the medical oncology team. I have to say, Maya was being adorable during this time…she has been so smiley lately, and just sits there grinning and cooing at me. I think she is loving all of the attention she has been getting at the hospital. I’m always amazed by the number of people who stop and smile at her – she is quite the charmer!

While my mom was in therapy, my brother arrived to join us for the oncology meeting. We explained to him about the unexpected visit from radiology this morning, and we waited for the next team of doctors to arrive. He was a little upset he had missed the meeting, but it kind of happened unexpectedly, and we did not realize they were doing a full consult when they arrived.

Dr. Holdhoff from medical oncology arrived a little after 3:30. He said that Dr. Grossman was the head of the team, and would be meeting with us later in the week. At the start of our meeting, Dr. Kumar returned to share two new pieces of information with us: 1) they moved my mother’s initial radiation MRI up to tomorrow morning; and 2) they would not need to give my mother tattoos for the radiation treatment. We were thrilled to hear both pieces of information. We asked if the MRI could be done with my mom’s staples still in place, and he said no. Within minutes, they were arranging for her staples to be removed tonight!

Elliot had to leave a few minutes into the meeting so he could get home to relieve the babysitter. Maya and I stayed behind for the meeting, and my father agreed to drive us home. Dr. Holdhoff was wonderful…he explained the process of chemo (she will be taking one pill of Temodar a day for 6 weeks, then she will get a bit of a break, then she will do cycles of 7 days on, 21 days off for about 6 months). He talked to us about how the pill works (it inhibits the ability of the cells to divide). He discussed the side effects (most are rare, nausea is possible, but the greatest risk is for her blood counts, particularly platelets, to drop), and explained that they preemptively give a tablet of Zofran every day along with the chemo pill. They will closely monitor my mother’s blood levels, and if her platelets drop, they may discontinue the pills (at least temporarily). He also said that if my mother still experienced any nausea, they had other medical options to help control the nausea.

During our meeting, Dr. Holdhoff sat down with us and went over my mother’s scans, showing us where the tumor is, the size of it, and explaining how we hope the medications and radiation will deal with the remaining tumor cells. He talked to us about different trials and alternatives available, and how they will be managing the cancer from here on out. Jeremy also asked some great questions about alternative treatments (like accupuncture) that could augment the radiation and chemotherapy. He did not offer anything specific other than therapy (and said he would put us in touch with the oncology psychiatry liaison), but he said that he has heard about many people using alternative treatments such as accupuncture throughout chemo and radiation.

After the initial chat, the nurse and my father went back to my mother’s room, and Jeremy and I stayed to ask the doctor a few additional questions. Specifically, we wanted to know more about outcomes and prognosis. As I’ve said here many times, I am worried about trying to plan for the future…figuring out how much time we have, and how best to make my mom comfortable and keep her with us during whatever time she has left. As this doctor (and several others) said, it isn’t like humans have an expiration date on their feet. It is a guessing game. I again said that I was not looking for guarantees or promises, but I wanted to know where to set my expectations…what is reasonable to expect to see. I didn’t know if we needed to be thinking in terms of weeks, or if we could reasonably hope for months. I also wanted to know his best guess about the quality of that time, and how these treatments would affect her quality of life.

Dr. Holdhoff started out and said that if we did nothing but take her home, he felt she would only have 2 or 3 weeks left. He then said that she is young, had few health problems beyond the cancer, and had been in excellent condition until recently. He said that radiation should kill off more cells and inhibit the growth of the tumor, at least for a while. If she can tolerate the full course of radiation, and if this tumor responds as expected (and barring any complications), radiation alone could buy her several months of good time, like she is now or even a bit stronger. He felt that the combination of the radiation and the Temodar have been shown to increase the effectiveness of radiation, and could buy her even more time. The hope would be that we can reduce this tumor and inhibit its growth for at least the duration of the next 6 months of treatment, and then for a window of a few months after that. If all goes well, that would give us 6-9 months, and perhaps even longer if the tumor does not immediately start to grow when the treatment is complete. After the 9 month mark, there *may* be other options either to re-start the Temodar or try some other treatments or trials, and that could buy her some more time. So, today he gave us reason to hope that, if we can get through the next 6 weeks, we could have 6-9 more months, possibly more.

We learned that the average expectancy for survival for this type of tumor, when treated at Hopkins, has now jumped much higher since 2005. Hopkins is regularly seeing survival for 2-3 years, and sometimes longer. The biggest HOWEVER is that the survival rates are highest when the tumor is found before significant neurological impairments (like my mother is experiencing). The survival rates are much lower with the degree of impairment my mother currently has, but he told us he has seen people in far worse shape cognitively and physically survive long periods of time. He was very reluctant to encourage us to hope for time in terms of years, but he said it was possible. He was much more positive about the likelihood we could add months to my mother’s life.

Once again, we discussed how my mom initially got sick in May. This was the first doctor who told us point blank that had she been diagnosed even a few weeks earlier, and certainly back in May before the impairments really hit my mother, her odds of survival for 3-6 years would have significantly increased, and her quality of life during this time would have been vastly improved. He said that they tell patients who are in top physical condition that the average survival rate is about 20 months. He also said that is because she simply cannot qualify for many of the new treatments now due to the impairments – she is ineligible for many of the cutting-edge treatments unless she can walk and dress herself. Also, because my mom’s condition is now so extensive and advanced, when the tumor starts re-growing again after the first round of treatment, there is just less time to experiment with other treatments, and the deficits from the new tumor growth will be more significant than if she had no neurological deficits. Can I reiterate how angry I am that neither Montgomery General nor the ophthalmologist caught this earlier?

I also asked him about my mother’s quality of life during this time, and the appropriate setting for her. He said that we had a number of options, including nursing home care or keeping her at home. He said that we would likely need assistance at home, but that he felt an environment where she could have a room with a door (and the ability to go in and rest and get away from some of the noise of a household), access to a bathroom, and the ability to interact with family would be a good thing. He felt that putting her into a “hospice” type of situation (simply a hospital bed in a living room) was premature, and was far more limiting than what she needed right now, or for the next few months.

After Jeremy and I finished talking to Dr. Holdhoff, he went in to conduct an exam of my mother. He was impressed by her level of cognitive function, and he took some additional time to answer my mother’s questions. When he asked her if she had any other questions, she asked “When is my dinner coming?” As has been the case since she started taking steroids, food and mealtime is currently my mother’s most pressing concern.

We have put in requests to meet with the social workers from oncology and rehab to talk to us about some support options. We are also looking into some short-term housing options for us up near Hopkins for the 4-6 weeks of radiation (and we are entertaining the offers already made by several of our good friends). If all goes well, then we will look into renting a house down in the Bethesda/Rockville area with a bedroom and bathroom on the first floor, and we’ll take it from there.

My mother’s dinner arrived around 6:15, and then we all left for the evening. My Dad drove Maya and me home, and I brought him inside to give him some of the food we have been receiving. I put together a nice little meal for him to take home. I want to thank everyone who has been bringing food by for us – it has been a huge relief for me to just have food on hand at the end of a long day. Today, our friend Erica dropped off some quiches for us, and Betsy and Sam brought over a delicious pesto pasta salad that I ate for dinner.

This evening, I finally heard back from the woman from the Maryland Infant and Toddlers Programs, and she has arranged to come by tomorrow at 3:45 to work with Maya. Maya was wondeful tonight and went to bed at 9:45. I wish I could get her to go to sleep a little earlier, but I should probably just be thankful that she sleeps 10-12 hours a night. Elliot and Micah came home from the game a little after 10. Elliot and I took some time to catch up, and then I crashed on the couch for a few hours. I woke up around 2:30, and have been catching up on a few things. It is now almost 5:30, and I’m going to try and take another nap before our morning kicks off again.

So, the good news of the day is that they are doing everything possible to start the treatment as quickly as possible. My mother is currently stable and feeling great, and she is staple-free. On Wednesday, she will have her MRI to set up for radiation, and we will have our team meeting with the Rehabilitation team at 11:30. I’ll come home from the hospital on the early side so that Maya can meet with the speech language pathologist in the afternoon.

Many of you have asked our plans for Rosh Hashana. Tomorrow night, my father will join me, Elliot, Micah and Maya for a low-key dinner at our house. We’ve received several invitations to dinner…but we really don’t want to go anywhere without my mom. On Thursday night, we will do a bigger family dinner with Jeremy, Jen, the girls and my mother. We have reserved the family lounge and dining area, so it should be a perfect dinner. My cousin Jill has arranged for some holiday food for us, and Elliot and I cooked a brisket and some turkey last night to bring to the hospital. We’ll keep you posted!

Overall, today was a good day. My phone rang at 5:00 am…and it was Mom, calling to say “Hi, Tessie.” I don’t care that she woke me up – I was just so excited that she was calling. We were not on for long, but it brought a smile to my face.

I promised yesterday that I would explain why my mom calls me “Tess” or “Tessie.” According to my mother, when I was a small child, I pronounced my name as “Tessiekeys.” She was convinced that I would get lost somewhere, and that the police officers would never manage to get me home again because they would be searching for a Mr. and Mrs. Keys who had lost their daughter Tessie. My mom used to always call me Tessiekeys to tease me, and then she would shorten that to Tessie or Tess. She still calls me that to this day.

Micah and Maya slept until about 8:30 am today, and then we were off and running. Much to my surprise, our babysitter showed up at 9:00 am sharp! We hadn’t discussed whether she would take off for Labor Day…to be honest, I assumed she wouldn’t be showing up. But, I was thrilled to see her when she did arrive. My dad called a little after 9 to give me the daily update about my mom (she slept well and they were just headed in to wake her up). My mom called me again around 10:00 to tell me that there were a ton of helicopters landing at the hospital, and she thought if I stood in between the buildings with Micah, he would get to see the helicopters and he would love it. I smiled…my mom has always had a thing for airplanes and helicopters. She used to love to sit and watch the planes take off and land from the airport, and there is a spot on the GW Parkway that she always enjoys because you can see the planes taking off and landing.

Around 10:30, Elliot and I gathered our things and headed up to Hopkins with Maya to visit my mom. When we arrived, Trenna was already there, and my mom’s other college roommate, Reggie, and her husband Charles, were also visiting. My mom was just returning from a therapy session, and definitely feeling a bit tired. My Dad and Mona arrived a little later, followed by Jeremy and the girls…and the parade of visitors began. The girls did so much to lift mom’s spirits…and they couldn’t get enough time with Grampy, either! The girls were still sporting their sparkle tattoos they had gotten at the baby naming yesterday (Micah, too, still had a sparkly blue and green turtle tattoo on his arm).

Mona, Reggie and Mom had an opportunity to sit and reminisce about their college days. It was fun for me to hear them chatting and sharing stories. Next, my mom’s co-worker, Chi, and her son came up to see us. It was so wonderful for them to make the trip up, and my mom was thrilled to see Chi. She brought my mom this wonderful green tea sponge cake that she loves (and Chi, we gave her a piece after dinner tonight). Shortly thereafter, Trenna said her goodbyes and left to drive back to Syracuse.

The visitors continued throughout the day. Our friends Elaine and Robin were the next to arrive, and were there for several hours. I think this visit was particularly challenging for them…they lost their son-in-law to Lymphoma nearly 2 years ago. Jeremy had to take the girls back home, but they had a wonderful visit with all of us. Diane and Marisa also stopped by for a little while (and dropped off some brownies and cookies). Elliot had to leave to get home in time for the babysitter to get to her second job, so I decided to drive home later with my Dad and Mona. Mom had to head to another therapy session, and she was getting exhausted. She did really well in physical therapy today – they worked on standing and sitting up straight, and helping her turn her head to utilize the vision she has. Today she was doing a better job of turning her head and lifting her left arm. By the end of therapy, however, she was completely exhausted. Luckily, she had a bit of time to nap.

After therapy, the doctor came to speak to us. We learned that all the blood thinners my mom has been on made her blood too thin, and put her at a huge risk for a massive bleed. They said that they like to see the clotting factor around a 2-3, and my mom’s was almost at a 5. They asked for permission to give my mother a platelet transfusion to try to bring the clotting factor back down again. They will continue to monitor her levels, and if the first transfusion does not get her in range, they will do a second transfusion. If they overshoot and her clotting factor drops below 2, they will restart some of the blood thinners again. What a mess! I was worried about her blood clot, but they said that keeping her clotting factor between 2-3 would be the ideal level for dealing with her blood clot. Luckily, she has a PICC line in, and the transfusion went off without any issues.

My dad’s cousin Marlene and Hank were the next to arrive. My mom chatted with them and she talked about looking forward to seeing their new house at Thanksgiving (if it is done in time). I sure hope that happens. We rounded up the day with a visit from Sheila and Les on their way back into town from a wedding in New York. Sheila had crocheted a beautiful hat for my mom – the hat she is sporting in this blog. My mom was thrilled to have the hat, and she said it is keeping her nice and warm.

At the end of the day, my mom started asking some questions about how we were going to manage her at home. She was quite astute when she looked at me and said “I think maybe I’m far more debilitated than I realize.” I looked back at her and said, “Yes, mom, unfortunately that is true.” We talked a little about her coming home, and I said we were doing everything we can to get her there. We talked about the fact that if she comes back to their house, she wouldn’t be able to manage the stairs, or get to a bathroom. I asked her whether it was more important for her to get back to the house, or to just be in a home with us. She said that she didn’t really care about the house itself, she just wanted to be with us and not alone in a hospital. Although, in the next sentence she said that maybe she should be moved into a home like we did for my grandmother. Frankly, I think until she fully understands her physical condition and her prognosis, she probably cannot give a full opinion about what she wants. I think that her first choice would be to go home and live as she did before all of this happened…but that isn’t going to be an option.

Over the next week or two, we will need to start making some decisions about our future living arrangements. I know it is my hope to have her home with us, so that she can have her family around her when the time comes. But most of all, I want her to have the best possible quality of life for the time she has left…I don’t want to confine her to a hospital bed in the middle of a living room and strip her of her last vestiges of dignity if she is stronger than that.

To be honest, a lot will depend on how much time my mother is likely to have…we may only have weeks, but we could have a few months. Unfortunately, no one knows what will happen. It was only 10 days ago that we thought she was dying…and now the doctors think she is relatively stable, and could be for a while longer. That may also depend on how she tolerates radiation and chemotherapy. According to the doctors, brain radiation is fairly well tolerated…it doesn’t hurt and it isn’t as taxing on the body as other types of radiation. Additionally, chemotherapy is strictly oral, and again, supposedly well tolerated.

If my mom handles the radiation and chemo, it could buy her a bit more good time before the tumor grows into the basal ganglia. Shrinking the tumor and slowing its growth could relieve some of her symptoms, too. In that case, if she is a bit stronger and has some time, we may need to bring her to a house where she can have a room with a door, where she can rest when she is tired and move away from the noise of the house, and where there are also living areas for visitors to come and spend time with her. A house would allow her some privacy when she is dressing and using the toilet, or in need of an escape from the tumult. We would still need to hire some home health aides to help care for her.

If, however, my mom does not tolerate the radiation and chemo well, it will force us to discontinue treatment. In that case, my mom will not have much time left at all. If she is largely bedridden and unable to be seated in a chair or move around (or less interested in receiving visitors), then it may make sense to just bring her home to my parents’ house and set up a hospital bed in the living room.

At some point, we are going to have to talk to my mom more specifically about her prognosis. I’m not really sure when that will happen…all I know is that she needs to have hope right now. I suspect the doctor and/or the social worker will be doing that after we see how things go with radiation and chemo. She asked us early on to make sure that she participates in the decisions we make, and she wants us to make decisions together, as one voice, prioritizing quality of life first and foremost. That is how we decided to go ahead with the surgery. My mom wants to do whatever she can to get the most quality time she can get…but only if she can have quality time. Any treatments that are not bringing her more quality time…well, we won’t do them. It remains to be seen how radiation and chemo will fit into that goal.

We said goodnight to my mom around 6:00. Mona said her goodbyes because she is headed back to Texas in the morning. It has been wonderful for my mom to have her here all this time – she said it gave her spirits a real boost. I also appreciated having her around on Friday when my mom was so sick.

On a lighter note, Elliot and I are starting to prepare for our Rosh Hashana dinner at the hospital. As I type this, we have two different versions of my mom’s brisket recipe cooking on the stove, and Elliot is also cooking his grandmother’s turkey recipe. The two of us cooked these together tonight. We plan to bring all the food to the hospital and have a little family celebration. Hopefully, my mom can tell us if we got her recipe right!

And for those of you who have asked, my mother’s Hebrew name is Dvorah Chana bat Bruchah Leah.

I have learned that life is short…and life as you know it can be upended in an instant. My world turned upside down on Memorial Day this year…and I didn’t even realize it at the time. From the time my mom left the hospital I had a nagging feeling that I was losing her. In fact, for months, I felt like I had lost my mom and she was right there in front of me. Over the weeks, I watched my mom suffer because she did not feel well…and no one seemed to be able to tell her why. For a week or two in late July/early August, it started to feel like she was coming back to us…until her balance issues started. Over the course of ten days before she was hospitalized at Suburban on August 21, I watched my mom deteriorate. But, it was that simple 24 hour period beginning around 5:00 pm on August 21 when I finally realized how my world would forever be altered.

Today was a difficult day for me. On the one hand, it was filled with so much happiness as we were able to share in the naming celebration of our good friends, Matt and Marisa, as they gave their daughter her Hebrew name. I found myself crying at so many points during that ceremony – sad that my mother was not able to be there (in fact, she was angry that we did not bring her outfit so she could join us, and even angrier when she realized we went without her) and sad that Maya’s naming ceremony a month before all of this tragedy struck will likely be the last time my children celebrate a family event with all four of their grandparents together. We were so touched today when Matt and Marisa mentioned mom during the ceremony, and so thankful to all of the people who came up to us to tell us that their thoughts and prayers are with us. It was a beautiful event, and we were lucky to participate.

While we were at the naming ceremony, Mona and Trenna visited with my mom at the hospital, and my mom’s co-worker, Jo, also stopped in to visit. I am happy to report she was headache (and nausea) free today! (Dr. Olivi even called us early this morning to let us know he had checked in on her and she was doing much better). The rehab unit had a “BBQ” on the floor…burgers, dogs, cole slaw, potato salad and cookies. They had a good time there. My mother spent most of the day in therapy…speech therapy, physical therapy, occupational therapy and recreational therapy.

After the naming, my brother, father, Suzette, Joel, Elliot, Micah, Maya and I all headed over to the hospital. We were joined there by Suellen and Greg and Gail and Steven. My mom was so busy with therapy that we had very little time to visit with her, although she was overjoyed when she got a few minutes with Micah and Maya on her way to therapy. I went with my mom to her recreational therapy where they had her playing circle solitaire. It was so hard to see my mom frustrated and tired by such a seemingly simple task…playing a game that she once taught me how to play more than 20 years ago. She found it challenging to turn her head and use the vision she has to find the different piles. She had difficulty figuring out how to count from 7 to 10, and she couldn’t remember the way the numbers on a clock worked. No matter what happens, this tragic disease has stolen so much already from my mother…things she can never get back.

After her therapy sessions today, my mom was exhausted. At one point, she turned to me and said “this is just so hard for me to do, Tess. I’m so tired, and I just want to go home.” (I’ll explain another day why my mom calls me Tess). It brought tears to my eyes, and I put my arm around her and said “I know mom, but it takes hard work to get stronger, and you can do this.” Before I left this evening, she asked me to gather her things together. When I asked her why I needed to pack them all up, she asked “Aren’t I going home tonight?” When I told her that no, she wasn’t, and she was supposed to be in rehab for 2-3 weeks, she looked devastated.

On a positive note, tonight around 9:00, I was sitting here, starting to write this blog, when the phone rang. I looked at the caller id and saw that it was my mom’s cell phone! My heart skipped a beat as I eagerly answered it. I waited a few minutes before my mom actually managed to get the phone to her ear and speak. She greeted me with her typical “Hiya” and said she just wanted to call me to say goodnight. She said that they had just given her meds, and she was going to bed. It was 100% my mom…as if there was nothing wrong at all. We chatted a few minutes and then I said goodnight and told her I would see her in the morning.

If you’d like to end on a high note, perhaps you should stop reading the rest of this blog post. Tonight, the sad is taking over, and I intend to share that here. Everyday, I sit here and read so many words of encouragement…and I appreciate each and every one of them. But, at the same time, I cringe every time someone tells us how my mom will “beat the odds” or shares a story about how someone they know with a different type of stage IV cancer went into remission. I know those words are meant as messages of hope, and I know that everyone just wants us to have faith and keep strong. But unlike so many other cancers, GBMs are fatal – they are not curable. Some people, who catch it early enough, or have them in locations that are fairly easy to remove surgically can have some really good time and years left – they live with cancer, but they are not “cured.” I know everyone is well-meaning and wants to give us hope for a happy ending…but it just hurts when I hear those comments, and I’m angry at the unfairness that my mom doesn’t even have a fighting chance to beat this disease. Because my mom IS a fighter, and I do believe that if there were odds of survival and cure, she could do it. My mom always used to tell us that “no one ever said life is fair.” Well, she is right, because this definitely isn’t fair. All we can hope for is a little more time, and I do hope for that with every fiber of my being.

Even if my mom becomes one of the “lucky” ones and manages to live another year or two (or even more), she has already been robbed of so much of herself. Her independence is gone…that went with her loss of vision, her loss of balance, and the loss of use of her left side of her body. Those are things she will never recover. She won’t be able to babysit her grandchildren, or crochet an afghan, or drive herself to dinner with her friends, or take off for a girls’ weekend, or any number of other things she loved to do. This disease has already destroyed so much of her brain that she will never be as she was even just a few short weeks ago. Luckily, this disease has spared her memories and her personality…she is now my mom, trapped inside a failing body.

And I am angry at the doctors who say finding it earlier wouldn’t have changed the outcome. To parody a Bill Clinton phrase, it all depends on what your definition of “outcome” is. As I’ve said before, I understand that if your definition of outcome is life v. death, then yes, finding this cancer back in May wouldn’t have changed the outcome. This GBM was fatal the minute it appeared in my mother’s head, and I understand that. BUT, if “outcome” is defined by quality of life and longevity, then I absolutely believe that finding this tumor back in May would have made a difference. She could have gone through surgery, chemo and radiation before she lost her vision, her balance, her strength and her ability to walk. She might not have needed to go to rehab at all, and she could have lived comfortably in her own home during this time, walking the stairs, doing the things she most enjoyed doing. I firmly believe that we could have gotten more of the tumor, possibly buying her a bit more time. If nothing else, my mom could have had more strength to fight and LIVE in the now. I also believe she would not have endured the past few months of misery, and I think that the time she had left would have been better quality time. So, hearing that the “outcome” wouldn’t be any different does not provide me any sense of comfort at all, because I am 100% certain we could have given her a bit more quality. And any doctor who says otherwise…well, just is choosing a different definition of the word “outcome.”

Each day, simple things in life make me realize what I will be losing when I lose my mother. And yes, I said when. I hear one of my mom’s friends pass on news of someone we know, and I realize that I will be cut off from the “grapevine.” I talk about planning a trip, and I realize that I’m not sure what I will do with my children when I go out of town. My mom is one of my best friends, and I rely on her for so many little things. She is my sounding board and my outlet. In times like these, she is normally the first person I would turn to for help…and I can’t because she is the one who is sick. I think of a million and nine inside jokes and little phrases that my mom and I say to each other, and I realize that there is no one else in the world who will understand what is funny about them. I miss having my mom call me everyday to say she is “touching base” to which I always respond “what base are you touching?” and my mom promptly laughs as we say “third base.” There is a story there…and probably no one else would appreciate the humor in it. I think about how she tells me she is going to get her hair colored, and I ask her what color, and she responds with “blue” while we both dissolve in laughter. I wonder who else knows enough about me to share my “small world” experiences. I start singing the song “You Are My Sunshine” to my children, and the words my mother used to sing to me when I was a small child smack me between the eyes…”You are my sunshine, my only sunshine, you make me happy when skies are grey. You’ll never know, dear, how much I love you. Please don’t take my sunshine away. The other night, dear, as I lay sleeping, I dreamt I held you in my arms. But when I woke, dear, I was mistaken, and I hung my head and cried.” I already miss my sunshine.

I am happy to report that while my little oatmeal fiend, Micah, and I sat eating breakfast this morning, we received our “morning update” call from my father. According to the nurses, she slept through the night, and they were just heading in to wake her up for breakfast. Seems like we may have cleared the hurdle.

We are all getting ready for a baby naming ceremony today (my mom was asking all day yesterday who was going to pick her up and take her). Mona and my cousin Trenna will head to the hospital this morning, and the rest of us will join this afternoon after the naming. Let’s hope for a great day today.

I’m sorry to report that today was not a good day. In fact, today was an awful day. The one thing several doctors have said to us is that this type of brain cancer is not painful…I was comforted knowing that my mother would not be in pain throughout this process. Unfortunately, today that just was not true. I hope she never has to experience this kind of pain and discomfort again.

Since Thursday, my mother has been complaining of a headache and increased pressure and squeezing behind her eye. I’ve been concerned that her intra-cranial pressure had been increasing. Since Thursday, I’ve been trying to talk to a doctor about it, but have not been able to see Dr. Olivi in person. The physician assistant said it was no big deal, and the nurses have not been passing along my mom’s complaints, and the floor residents have all basically done the “not my bailiwick” response and directed me back to the neurosurgeon.

This morning, my father called with his morning update and told me that mom had been experiencing nausea. After her hospitalizations in May and a few weeks ago, I knew that meant increasing intra-cranial pressure. I immediately got on the phone trying to reach Dr. Olivi. I tried several numbers I had for him, and none of them worked. I called my dad to see if he had Dr. Olivi’s card, and he did not. I called my brother to see if he had Dr. Olivi’s card, and he did not. As my brother and I were talking, he was looking at Dr. Brem’s card, and realized that his email address looked fairly standard (a first initial last name address). Jeremy suggested that I try using the same format for Dr. Olivi and see if we could reach him that way. I think about 10 seconds after I hit send on my email, my cell phone was ringing!

Dr. Olivi and I chatted for a bit, and he quickly reassured me that he has not been neglecting my mother. I mentioned that she had been experiencing increasing pain in her head and behind her eyes, and that I was concerned that her discomfort had escalated into nausea. I communicated that she was hurting, and had now been uncomfortable for several days and I felt that they needed to do more for her than just simply give her Tylenol. He indicated that he was aware of her increasing discomfort, and told me that he had authorized a few additional medications over the past few days to try and increase her comfort. He promised that he would be in to see my mother today, and would come after noon when we would all be there, and he would call over again to hear how she was doing and see what else he could do for her. He also told me that we would be meeting with the oncologist and the radiologist this week to discuss moving forward.

Elliot took Micah to services, and after speaking to Dr. Olivi around 11:00 am, I took Maya in the car and drove up to Hopkins. Our plan was that Elliot would likely bring Micah up to meet us after Micah’s afternoon nap. When I arrived at the hospital, my sister-in-law, Jen, was already there. My mother was extremely uncomfortable, complaining of severe nausea and pain behind her eye. I learned that the morning therapy session was cut short because my mother was in too much pain. We spent time putting cold and hot compresses on her head and neck, and we talked to the nurse and got her some more anti-nausea medications.

The nurse came in and informed us that they planned to take her down for another CT scan. They also gave her some additional medications…neurontin (for nerve pain…Nugget used to take that years ago for her back pain), tramadol (for her headache) and they increased her steroid (from 2 mg every 8 hours to 2 mg every 6 hours). About 30 minutes later, the nausea seemed to ease up, and my mom was feeling well enough to eat a little pasta and some carrots for lunch. They came to take my mom for the CT scan, Jen left to go home, and I took a quick break in the cafeteria.

When I returned, my mom was just coming back from her CT scan and her nausea had increased and her pain was through the roof. At that point, she started dry heaving. I was doing everything I could to make her feel better, but I was getting angry that they were letting her sit in so much discomfort for so long. I sent Dr. Olivi another email, and I asked to speak to the floor doctor.

My Dad and Mona arrived around 3, and my mom was in terrible shape. I was trying to hold the bucket while she threw up, wipe her brow, and nurse a crying baby all at the same time. Mona immediately took over caring for my mom so I could take care of Maya – she was a huge help all day today, and frankly, she did most of the dirty work today.

By 4:00, my mom’s nausea, pain and vomiting were all escalating, and I was livid. I asked the nurse to page Dr. Olivi, and I also asked to speak to the resident for the rehab wing. Initially, they said he was gone for the day, but they did reach him on the phone and got permission to give my mom some composine for the nausea. The composine finally arrived around 4:30…and that did absolutely nothing for her. By 5:00, I was furious. Jeremy and Trenna had arrived, and we were all quite concerned about my mom. Mona kept her cold hands on mom’s head, and we were taking turns helping my mom hold the bucket (in truth, Mona was doing most of the work…I took a few shifts, but the baby just kept needing to nurse all day long). Trenna helped collect the puke buckets and bring them in the bathroom and bring us out fresh buckets.

Jeremy also sent Dr. Olivi an email asking him to get in touch with us, and I sent a second email to him. We were getting extremely worked up by the lack of response. In the middle of all of this, my mom’s friend and co-worker, Gonzalo, arrived to visit. I felt terrible that she really was not in a position to have a good visit with him, but she was so happy he took the time to come see her. He brought her a beautiful little frame filled with flowers with a lovely poem inscribed around the edges. I read the card and the poem to my mom, and she thought it was beautiful. Unfortunately, Gonzalo couldn’t stay long because my mom was so sick. When he left, my mother turned to me (as she does EVERY time Gonzalo’s name comes up) and said, “I really like Gonzalo…he is such a kind man, and he truly is such a Gentleman.”

Finally, at 6:00, I got an email from Dr. Olivi saying he was unexpectedly diverted to Bayview for an emergency, but he would be in touch with us soon. It was almost 30 more minutes before the nurse came in to say that Dr. Olivi was on the phone. I went to speak to him, and he said that he was looking at the scans and he felt that my mom’s tumor had grown slightly, but it did not look like the “mass effect” (the swelling/pressure due to the tumor) had changed much at all. He said that her increased symptoms could have something to do with the tumor growth, but it could simply be due to the decreased steroids over the past few days…that my mother may not be tolerating the lower dosage. He said he was going to give her another 10 mg of decadrone to try and immediately reduce the pressure, and then he would be increasing her oral steroid dosage to 4 mg every 6 hours. He felt that she would quickly experience relief and then we would worry about trying to reduce the dosage a bit later. Dr. Olivi also assured me that he was sending over his resident, who would stay and oversee things until my mother was feeling better.

After our phone conversation, the nurse informed me that the rehab resident would also be in to see us shortly. Within 30 minutes, both residents were in the room, and there was a nurse on site to administer the decadrone and more zofran. The rehab resident also prescribed some reglan to help with the nausea. The rehab resident is also a doctor of osteopathy, and he spent some time manipulating and adjusting my mother’s neck to relieve some of the kinked muscles in her neck.

Finally, with the decadrone on board, and more anti-nausea medications…my mom started to feel better. It was such a relief to all of us! We did also get an apology from the residents and Dr. Olivi for taking so long to relieve my mother’s pain. When we finally left around 7:45, the pain in her eyes seemed to be improving, and the nausea was finally beginning to subside. We hoped she would fall asleep and have a good evening.

About 2 minutes ago, I received a call from my father with the latest update from the hospital. They said mom is currently resting comfortably! They said she does seem a bit confused (not really a surprise with all the additional medication they had to give her today), but I expect that will pass tomorrow. What a relief!

I’m hoping tomorrow is a much better day, and I am hoping that they can keep things under control with better dosages of the steroids. I don’t want my mother to have to experience another minute of pain…and I certainly never want her to live through a day like today again. Seeing her that way…and being able to do nothing to help her…was terrible. I am so angry and frustrated that the doctors let it get that awful. She has been progressively complaining about the headaches and other symptoms, and I wish they had acted faster to respond to her discomfort. I have been told they will be more proactive with monitoring her pain and will be more careful about reducing her steroid dosage in the future.

No pictures today…but perhaps I can snag a few tomorrow.

I realize that I’ve lost the days…I no longer know the day of the week or the date. For those of you who know me well, that isn’t much of a surprise, because even when I’m not in “crisis” mode, I barely have a clue about the date or the day of the week. But now, it seems the days all flow together – it is getting hard for me to differentiate one day from the next.

Today, our personal challenge was a last minute cancellation from our babysitter (not the one who started on Monday, but our regular sitter who worked with us all summer this year and last year). She had an emergency crop up and it was unavoidable, but I realize that I’m not coping with these types of unexpected bumps in the road as well as I normally would. After taking some time to panic about how we would manage the day, Elliot said he would stay home with Micah while I took Maya up to Hopkins to visit my mom. Thank goodness for the change in policy that allows us to bring the baby in to see my mom!

We kicked off the day with another visit from the Maryland Infants and Toddlers program, this time to evaluate Micah. It was actually an extremely informative evaluation – I learned a lot about Micah’s capacity to learn and process language, and they shared several techniques for helping him focus and for dealing with some of his recent behavioral outbursts. It was no surprise that they did not qualify him for any support services, but I was surprised to find that they evaluated him as slightly delayed (2 months) in his gross and fine motor skills but advanced in his language and social skills. They left us some great information about how we can work to improve his skills.

I think I’m sharing this information here because normally I would share it with my mother. For months, I’ve been batting around my concerns and frustrations with her, and she has always given me ideas about how to cope, where I should seek help, and to encourage me to trust my instincts. Ever since May, however, things just haven’t been the same, and I’ve missed having her talk me through the process and sharing her experiences raising us. During our visit today, I was able to give her an update about the meeting, and she seemed genuinely interested in the appointment, and glad to hear that we are on a positive path with Micah.

I arrived at the hospital around 12 today, and went straight to see my mother. I knew she had just been through three hours of physical therapy, and was thrilled to find her awake, dressed in regular clothes and sitting in a chair. She seemed alert and in great spirits, but her head was hurting again. She even told me she wanted to try to go to work on Monday (and gave me a dirty look when I explained that she could not go in on Monday). Once again, I spoke to the nurse about the head pain. I have to say I’m a bit concerned about her discomfort behind her eyes…I really wish a doctor would come and discuss it with us and explain why they are NOT concerned.

Maya and I spent an hour and a half with my mom. We chatted, I read her some of your wonderful messages, and she again told me that she wants to sit down and dictate a blog post to thank all of you for your wonderful support. I will try and make that happen this weekend. My mom had just enough time to eat her lunch before her next round of therapy arrived at 1:30. I decided to make a quick run to the cafeteria and then hang out in the family lounge. Before I left, the physical therapist explained the rehab process to me. As I understand it, today was largely about evaluating my mom and establishing her “baseline.” She will receive therapy at least 5 out of 7 days each week for three hours each day, and it will include speech, physical therapy, occupational therapy and recreational therapy. They will be meeting with us on Wednesday to discuss the goals and realities with us, so that should be an informative meeting.

A little after 2, my Dad and Mona arrived. The therapist ended up changing mom’s therapy time, so we returned to her room for another visit. She was starting to get a bit sleepy and wanted time to nap before everyone else arrived, so we decided to leave her for a bit and head back down to the cafeteria. While we were there, Diane and Joey and Suzette and Joel joined us.

We headed back upstairs, and mom was still doing well. They had put her back in bed so she could nap, but we all sat and chatted with her. We were there until a little after 5:00, and we decided to leave so that she could rest. Jeremy was unable to join us today, but he got to call and have a nice chat with my mom on the phone. Tomorrow, he is going to wait for our cousin Trenna to arrive and bring her to the hospital.

Actually, Jeremy and I had several good conversations today…laughing a little, crying a little, talking about our situation and our different ways of coping, and naturally, snapping at each other a bit (it would not be a conversation between us without a little bit of snark). We both wanted each other to know that we are here for each other, and understand. I reassured Jeremy that he needed to make sure he stays on top of things at work and that I understood that. In fact, mom had asked me to tell Jeremy that she wanted him to focus on work because she was “very busy and not bored at all” in rehab. He, like everyone else, tried to tell me that I should take more space and not come to the hospital as much. I explained to Jeremy that I *have* to be there…for me. I made it clear that I don’t expect that from anyone else, but I go for me. While I find it difficult to be there sometimes, I NEED to be there to soak up every minute I can, and it is harder for me when I’m not there. If she was in rehab near the house, I’d probably go back after putting the kids to bed, even if it was just to watch her sleep for a little while. I understand why others need breaks during these times, but I just can’t take that space right now.

I’m not sure that I have any “big” news to report – mom looked good, she seems sharp, she is anxious to do her therapy and start making progress, and it was great to see her in regular clothing again.

Despite all of this progress…I’ve been having trouble keeping the sad at bay the past 24 hrs. I seem to keep bursting into tears all over the place. Tonight, Micah saw me crying and came over and kept saying “Mommy eyes” and trying to touch my tears. He always has a way to bring a smile to my face, even though he just doesn’t understand. Elliot took Maya to services with him tonight so Micah and I could have a bit of alone time. I couldn’t stop laughing at one point when he took the oven mitts and put them on his hands and ran around the house with them. I found myself reaching for the phone, wanting to share the story with my mom…and then the tears came again. Luckily, Micah decided it was time to go to the potty (no, he isn’t really using the potty, but he likes to sit on his little potty and then throw perfectly clean toilet paper in the toilet, and I like to indulge him in the hope that it will lead to potty training). We also spent some time this evening looking out the window at a neighbor’s cat sleeping on the grill (I got a chorus of MEOWS from Micah).

I know tomorrow I will be heading back to the hospital, and I think it will be another busy day with visitors. I’m looking forward to seeing my cousin Trenna, who is coming into town to see mom. Wow…another long post for very little news.

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

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

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

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

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

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

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

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

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

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

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

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

With Love and Hope,
Elliot

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

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

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

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

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

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

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

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

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

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

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

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

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