The Tears Keep Rolling

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, DH said he would stay home with Micah while I took Maya up to the hospital 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 state early intervention 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 messages from friends and family, and she again told me that she wants to sit down and dictate a message to thank everyone for their 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 my mom's friend 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, several other friends 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. My brother 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 to arrive and bring her to the hospital.

Actually, my brother 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 him 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 him 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 him 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. DH 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, who is coming into town to see mom. Wow...another long post for very little news.

Victory!

Today was an important day...we helped change the policy at the hospital 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?

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, DH left today for a series of meetings, and I drove the nanny and Micah to class, then drove with Maya up to the hospital. My sister-in-law 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 to arrive and babysit. While I waited, I received a call from 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 visitation (and children) policy, and she wanted to come meet with me after her meeting.

My cousin showed up a few minutes later, which gave me a few hours to go spend with my mom. I joined SIL 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 two of her friends, and then SIL 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, she informed me that she pitched a new visitation policy to the board, and it was warmly received. The hospital 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, the hospital administrator 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 my cousin. After she left, I returned to the lobby and ran into my brother. We headed upstairs, and on the way we also ran into my dad and my mom's friend 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 my brother, my dad and my mom's friend to spend more time with my mom while I headed back downstairs. I called DH and he decided to bring Micah up to visit with his Grammy, and then I coordinated with SIL 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.

DH showed up around 5 and we brought Micah in to see my mother while my mom's friend watched Maya. Once again, mom was thrilled! A short while later, SIL arrived with the girls, 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 my mom's friend 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 my dad and my mom's friend left to go grab a...higher caliber feast. All I can say is that after a long battle with the hospital 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...my mom's friend 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 first cousin will be visiting, too. So...charging ahead, and hoping we can make things a little easier for my mom with rehab.

A break from the sad

I've spent so much time lately blogging about the sad stuff that I have spent very little time focusing on Micah and Maya. I have to say, they are doing amazingly well! This time has been so hard on them - I'm gone so much, they have been dragged back and forth to the hospitals, and their routines have been interrupted. This week, our new nanny started, so Micah's world is in a bit of upheaval.

So, here is an update on them. Micah is now 20 months old...his language skills are starting to explode, and he is an endless source of joy for me during a terrible time. He is definitely in the midst of the terrible twos - he is stubborn and difficult and throws many tempertantrums. He likes things the way he likes them, and he is not afraid to yell about it. He spends much of his time begging to watch "Elmo, peas." His obsession with Elmo grows stronger with each passing day. He loves raisins, and insists on eating them from the bag. He sometimes likes to eat with a fork, and other times gets mad if we cut his food. Lately, he loves eating whole fruit...the whole apple, or the whole peach - no more "baby pieces" for Micah. He is starting to repeat lots of words - he uses words like keys, nice and mess. When he says "nice" he usually walks over and pets someone on the head. He also knows to point to his shirt or the floor when it is covered with food and say "mess." He is full of love, hugs, and kisses, and will still respond and say "ME" with the most adorable expression on his face every time I ask "who's cute?" He is finally starting to warm up to Maya - he calls her baby, and a few times he has even used her name. He tries to snuggle with her and give her kisses now and again...although he still occasionally bops her on the head or drops a remote on her. He can now point to and identify most of his family members, and he is very well versed in his body parts. I love how he says "mouth," "nose," "teeth" and "eyes." I find it interesting that he can point to his head, ears, chin, hair, feet, hands, elbows and a few other parts, but he never uses those words. I am unsure how many teeth he has as he will not let me anywhere near his mouth to count them. I'd guess he has at least 12 by now, possibly more.

Maya is growing each day by leaps and bounds. Now that she is on Prevacid, she is a fairly easy-going baby (except for about 1/2 hour from 5:30-6:00 pm). She is at a great stage right now - she sits and smiles and chuckles and coos at me all day long. She will go anywhere, and will let anyone hold her. She is not particularly fond of the car, but she seems to be getting a little better. Her eyelashes are getting nice and long, and she is just truly a happy baby. She has been rolling over from belly to back since she was 5 weeks old. She has amazing head control, and I think she can sit unassisted for like 10-15 seconds at a time! I think Micah was 4 or 5 months old before he could do that. At her 2 month checkup, she weighed 10 lbs and measured 22 1/2 inches. She is still wearing newborn sized clothes, but should be in the 0-3 month size soon. Best of all - she is an amazing sleeper. She naps well all day, and she sleeps 10-12 hours a night! Our biggest challenge with her is feeding...she has a sucking/swallowing problem, which makes both nursing and bottle feeding a challenge. Her problem has been diagnosed as "disorganized sucking" - it is a problem most common in preemies who are born before their suck reflex has developed. In short, she has a very hard time figuring out how to suck properly. Her tongue is usually in the wrong place, and sometimes she chokes. She also has an overly strong gag reflex, so that makes everything a bit more difficult. Because of these challenges, she is unable to take a bottle (well, she has taken a bottle on a few occasions, but most of the time she cannot get organized and get the suck-swallow pattern together without choking on the bottle), and she spends a lot of time smacking up my nipples while she nurses. We just got her evaluated by the state program, and hope that they will be able to improve this issue for us.

Reality check

Some days, I am finding it hard to sit down and write these updates. My mom looked great today - the swelling in her eyes has gone down, and she is very much herself. I called her early this morning to check on her, and she was in the middle of a visit with the daughter of her good friend. I told her what time I planned to arrive and gave her a message from my father, and she said she was looking forward to seeing me. DH and I arrived at the hospital around 11:30. On our way there, we coordinated the visits for the day - my mom's friends were coming to help out, and two of my mom's co-workers planned to come see us.

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

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

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

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

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

Primary Brain Cancer

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 will be purchasing bracelets with a grey ribbon to show our support for the fight ahead (and we will be trying to find some of those grey rubber bracelets to purchase and hand out for 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?