Update webpage for

Simone Weinstein

Simone's Caringbridge webpage

This webpage is for updates while Jeanette is on vacation

Please sign Simone's guestbook- she reads it for comfort in the evenings.

Updates

previous daily journal entries

 

 

Subject: Simone update Tu. 8/24
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Last night as I was sitting at the edge of her hospital bed talking to Simone about how glad I was she hadn't had a stroke, she said, "Don't worry Daddy, how bad could it be? I already have cancer."

Overnight, Simone had another brief spell. However, in the morning she walked to and backwards from the door, and performed well on a battery of motor tests, and things were looking up a little. Dr. V looked into and effused over Simone's perfect "medical school" eyeballs. Simone liked that.

Dr. V said they thought Simone had a delayed reaction to the toxicity of the methatrexate from the spinal, a "transitory meningitis." He said they might have to dump the methatrexate and go with erisy instead. However, they scheduled her for an MRI and EEG to rule out other possibilities.

They then also set her to have a spinal tap to extract fluid to evaluate the methatrexate levels and see whether anything had gotten in there that shouldn't have. When the nurse came in to tell Simone that and tell her she was NPO (no food), Simone was upset and started crying; she did not want to have another spinal. The nurse asked what she could do to help: "What helps at home?" "I just cry and then I deal with it."

Debby went home for a little while, and Simone walked over to the ledge and rested in the sun, graciously granting me an audience to play some cards with her. Then she went back to her bed.

They then said she would not have to have a spinal today, but tomorrow instead. Later they brought in a big EEG device that measures her brainwaves, and I told her that I'd always wanted to get a brainwave monitor for the house, since you never knew when we'd want to measure each other's brainwaves. She was very good natured as they wired her up- including TWENTY wires pasted all over her head. With all the streaming wires coming from her body and bald scalp, I could help but take half a dozen pictures. The whole ordeal took 45 minutes, and she was fine about it.

She had a nice visit with the social worker, near the end of which she had another episode, of weakness in her left arm and leg.

Every day this year has been a trauma cumulative with the day before; and there's hardly a line for one trauma to begin when the last is just as fresh, but I think watching my daughter first learn she had cancer, watching my daughter lying in bed in May on morphine and totally non-communicative, and watching her weep in terror this afternoon over whether the partial paralysis she was feeling will be permanent, were truly independently Stygian traumas. I can barely even imagine how Simone must have felt.

Today would have been her first day of high school. Debby is very depressed about this; all of Simone's friends are excited, nervous, and scared about their new school, while Simone is completely missing out.

Debby came back for the evening, and I left. Laurel watched Moriah, while I went into the office to finish some work. By 8pm, Simone had not had her MRI yet, and as they had never told us she wasn't going to have it, we asked (for the fifth time), and were told that the MRI staff had gone home. They had never told us to stand down, and we spent the whole day thinking that every knock at the door would bring an orderly with a wheelchair. This is really the first time that there has been such a severe communication failure with the hospital. I called to discuss this. I was told that the schedule had been very tight, but that she would get in tomorrow. I said that tomorrow she will have a spinal tap, that she had to wait five hours for her last spinal tap, and so if they couldn't squeeze us in today, when she was free all day, I didn't have great faith in her being squeezed in tomorrow, and I didn't want her to have to come back in on Thursday after all she's been through Friday, Saturday, yesterday and today. I also indicated that as a parent, I would want them to come to conclusions as quickly as they possibly could. They said they would do all they could to make sure she got her MRI tomorrow. I will say the kinds of delays we have been experiencing this past week with the hospital have been unusual; perhaps they are stretched very thin with people on summer vacation. So, if everything else goes as best as it possibly can, and the results form the spinal and EEG enable her to go home tomorrow (for which we pray), I am worried about her and Debby having to go through having to come back into the Hospital on Thursday. But, I guess that is the least of our worries.

Simone went on group loop from the hospital this evening, and met a girl to whom the same thing happened, and she gets her spinals with erisy instead of methatrexate. So it's not so terribly uncommon- in fact, everyone we've talked to who's had A.L.L. chemotherapy has had a reaction, including one teenager who experienced blindness, and a ten year old who experienced total paralysis after her first spinal.

Thank you all for keeping Simone in your thoughts and prayers.

Love,
Jeremy

 

 

Subject: Simone rehospitalized Monday 8/23
To: "Jeanette Gross" <jeanetteg@earthlink.net>, "Steve Ellis" <ellis.family@sbcglobal.net>

Simone did not feel well this morning. She threw up twice. She was unhappily huddled on the couch for the morning. Last night she complained she had a headache, continuing into this morning. However, she had a very nice visit with Megan and immediately afterwards commented that her headache felt better.

Unfortunately, late this afternoon the left half of Simone's face fell paralyzed, and her fingers on her left hand went numb and her left arm felt heavy. Debby dropped Moriah off at the office and took Simone down to the emergency room. Ellen Ellis took Moriah, and I went down to the hospital. Once again, we were in a private room in the ER. While we were talking in Simone's room in the ER, Simone was slightly slurring her words, not moving the left side of her face as much as the right. I asked for and got a full smile, but was worried by the left side not turning up as much as the right.

While lying in her bed in the ER, at around 7:30 she felt tingling In her face again, and I ran out of her room into the main area and found a nurse. They quickly brought her up to a CT scan, bumping her right to the top of the waiting list. By now Simone was crying from fright. Debby and I wore lead shields and stayed in with her. We then went back with her to her room in the ER. I asked about whether she was going to get her scheduled chemo, and after I received no reply, called the oncologist on call, who said, "That's the least of her worries," which was not remotely comforting.

After 9, I again ran out for help because she was having another episode. The supervising doctor came in, apologized for the delay, saying there were three kids brought in by parents unconscious, having been hit by cars, in the 20 minutes following Simone's admittance, so they were badly backed up. But they had finally looked at her results. They didn't know what was wrong, but they were able to rule out stroke. I asked repeatedly, and the doctor showed me the CT readout. So having from 5 until 9:30 grown progressively worried that Simone had had a stroke, I was relieved with that at least. They think it is most likely a side effect of last Wednesday's spinally administered methatrexate, but we don't know yet, and if it is a reaction, we don't know what it will mean for her chemotherapy schedule, which we had hoped to see enter maintenance in a few weeks.

Simone gave herself her own sobriety tests to check the function of her arms, touching fingers to palm. She also did exercises for her left hand, and worried over its weakness.

Finally at 10:15, she was transferred to 5 South, but worried that the numbness had spread to her legs. After we got upstairs, she felt it had gotten worse, and couldn't squeeze her hand or bear weight on her left leg. She was crying with worry over whether she'd be able to walk again. The episodes start with the cheek and then they move down.

Ellen Ellis looked after Moriah and is brining changes of clothes and food for Debby and Simone from the house, and will be picking me up at the hospital to bring me home.

Please send your most healing prayers and thoughts to Simone.

Love,
Jeremy
 

 

Subject: Simone Update Sunday 8/22
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net


Simone woke up this morning feeling very sick, crying and throwing up, but her day went uphill from there soon enough.

Lisa Burlini came over and set up wireless internet, and Simone was very happy to be up and running on the internet on her laptop downstairs. She spent a good chunk of the rest of the day happily surfing, shopping, and IMíing her friends. Debby was happy to sit next to Simone on the couch checking out ebay together.

New eyelashes and eyebrows are starting to frame Monie's eyes. "Look, I can make facial expressions now." The very last, lone long eyelash hold-out has at last fallen out, as the newer ones start to sprout. Debby and Simone had called that last long eyelash "the soldier" (because it was saluting), and Debby said a prayer of thanks to the soldier. We can feel some fuzz starting to come in on her head- itís really coming in like a weed- two days ago we felt nothing at all, and one can really feel a good amount of tiny hairs today. Since her hair seems to have bottomed out and be on the way back up, Simone is "bald pride," and Debby took several photos of her hatless.

We videotaped what we hope and pray will be her last administration of chemo at home. Lisa also set up my laptop on wireless internet, so I looked up resources for post-traumatic stress syndrome.

Debby wanted me to correct an item from yesterday's note- the first bag of donated blood was O positive, CVN negative, since Simone's blood type (and mine) is A positive; so nothing but A+'s for me and Monie.

Love,
Jeremy


Subject: Simone Update Sat. 8/21
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net


Yesterday Debby was told to call the hospital at 7am to speak to the Charge Nurse to find out when Simone should come in for her transfusions. So she got up at 7am this morning and called, and was told to call back at 9am, when the Charge Nurse would arrive. She called back then and was told there was no Charge Nurse today, but to bring Simone in at 10. Debby verified that the blood ordered yesterday had in fact arrived, and dropped Simone and I off at the hospital on her way with Caitlin and Moriah to the circus, to which she was going with Johanna and Elijah.

So while Simone's friends were chatting and socializing on a beautiful day, the last Saturday of their summer before High School, Simone arrived for a very long day at the hospital.

She was in the hospital for more than five hours yesterday (however, Simone didn't utter a word of complaint yesterday or today, even if she wasn't especially happy), after which Debby gave up when all that had been accomplished was a cross-match and a blood order. Although we were in a room today by 10:15, it was 1:30 before the doctor signed off on the Benadryl she routinely gets before transfusions, and they started on the platelets.

By 3, I started asking when she was going to start getting blood, as we needed to know whether to ask the hospital to administer erisy (that wasn't an option yesterday, since the chemo lab was closed), and was told the blood would start after the shift change, and they knew how long she had been waiting. Debby was calling me every fifteen minutes increasingly agitated; Simone was napping okay, and I was grateful that there even exists a technique to give her blood, so I wasn't especially emphatic, as opposed to vocally curious, with the staff, who were uniformly very nice.

Finally, just before 4, the new nurse walked in with a bag of O negative and hooked her up. Shortly after the blood started flowing in she perked up and started eating, and I went to the cafeteria and brought back up a coke and a yoghurt and fruit parfait, which is a fun thing to eat, and which she was happy to see, having sent me downstairs with no faith in what I'd come back with.

5 East is within earshot of the heliport, and there were at least two kids brought in by helicopter today.

Fortunately the IV has a readout indicating how many minutes are left, so Debby was able to arrive with Moriah just minutes after Simone was unhooked and her broviac flushed, by a new nurse, as there was another shift change, and we were on our way back home by 8pm.

Love,
Jeremy

 

Subject: Simone Update Friday 8/20
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net
 

First thing this morning, Debby drew Simone's blood and dropped it off at the lab for counts.

Unfortunately, the lab was slow to process Simone's blood, so it wasn't until past 1pm that Debby got the call to bring Simone in for transfusions. However, after sitting around for hours in the day hospital and then the main hospital, by 6:30pm nothing had been started and the blood hadn't even arrived from Red Cross (which unfortunately indicates a crisis blood shortage in the area). Debby spoke up, and said she still needed to give Simone chemo at home tonight, and would be too tired to administer it at 2am, when she got home after waiting two more hours for the blood to arrive, and five hours at best for it to be pumped in, and said she wanted to take Simone home and come back tomorrow for the transfusions. The resident got quite an earful, but the doctors noted that her counts weren't so low that she couldn't wait twelve hours, and agreed.

At the same time, while I didn't know any of this was going on, Ellen Ellis took Moriah, and I went in to the hospital to surprise Debby with her birthday presents (a book and Janet Klein's newest CD, out just this week). As I was walking over to the hospital from BART, Debby called me to say they were leaving. We met up and went out to dinner at Caffe Delle Stelle in Walnut Creek, which was a much better way to spend Debby's birthday than a night in the hospital.

Love,
Jeremy
 

Subject: Simone Update Thurs. 8/19
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Moriah, due to her autism, does not have normal sleep rhythms. At 4:30 this morning she was up and blasting the TV in Simone's room. I went in, turned off the TV, and got ready for work. When I came in to kiss the girls goodbye, Simone asked me to sit and talk with her, which I did, and so for half an hour she told me all about a variety of topics, including Egyptian cat worship and how happy she was that she could feel eyebrow fuzz coming back in, until she fell back asleep.

Just as I managed to escape for a few minutes in the late morning to go shopping for Debby's birthday present- nothing like waiting until the last minute, since her birthday is Friday- Debby called to say Simone wanted to meet for lunch. So we had lunch at McCovey"s, and I will be back out shopping for her on Friday.

Debby bought Simone some cute new clothes today; during yesterday's interminable waiting for the spinal tap Simone demanded a present. Today Simone demanded virgin margaritas, so Donna brought over some mix, and Simone enjoyed margaritas until Debby broke the blender.

Simone's blood counts are low (the surface scratch on her leg from Saturday has grown into a raw, inflamed sore and bruise), and if tomorrow's blood draw shows them as lower, Debby might end up spending her birthday in the hospital with Simone. Simone was upset, insisting that she "ruined" our birthdays this year, in response to which we both told her that the truth is just the opposite.

We got accepted for Camp Okizu for a weekend we wanted next month, which is good news. When we went in May, Simone felt ill and we had to drive directly- 4 hours- from Camp Okizu to Childrens Hospital, were Simone ended up staying for the next very unpleasant 17 days.

In the evening we watched the Olympics, while Simone IM'd girlfriends about schedules for school, which starts next week. Her eyelashes are noticeably more present than they were last night, which made us all very happy. Simone was in a pretty good mood.

Love,
Jeremy
 

Subject: Simone Update Wed. 8/18
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone says she was cranky today. She had a spinal tap, but the surgery center was badly backed up, and she had to wait three hours, even though she was moved up from eighth to fifth. The cancer spinal taps and bone marrows were competing with a boatload of waiting tonsillectomies (Simone had hers at Childrens when she was 9), and not many of the backed up patients were waiting quietly. Fortunately, she had her VideoNow for distraction. Debby's theory is that the kids in consolidation get earlier time slots than those in the later phases, which I can understand, as they and their parents would be more anxious, as newer to this whole cancer thing. Afterwards, her nose felt stuffy, which isn't unusual, but hasn't happened to her before, although it went away as soon as she was allowed to sit up.

The head doctor said that Simone has a perfect [the part of the eye one sees when one shines a light in], and that he wishes he could show it to the younger doctors so they could see a baseline of what it looks like at its best.

When I got home from work around 9, I got the full details of her dialogue with the nurses as she fell asleep, which I always enjoy hearing. I thought she was in a reasonably decent mood.

The good news is that Simone has very teeny tiny eyelashes coming back in, which she enjoyed showing off to me with a big smile. She is still completely bald, but I think this means we'll see some fuzz soon.

Love,
Jeremy

 

Subject: Simone Update Tuesday 8/17
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Today was another busy, on balance good, day for Simone. In the morning she had bad vomiting, with a lot of bile, so she wasn't well enough to go to her High School registration. So Debby went on her own, very sad and unhappy but carried through it, quite literally, by Donna. Mallorie dropped off lunch for Simone.

At home, Simone had visits from her art therapist, her math tutor (after which she did 2 hours of math homework), and a special visit from my sister Melissa's best friend, Helen, with her daughter Sophie. Sophie is ten and went through chemotherapy several years ago, and is now a beautiful, healthy little girl. She made a lovely present for Simone, a painted ceramic, with Simone's name on the lid and "strength" painted inside.

Simone was dressed very cutely for her visitors today. Once again, she enjoyed watching the Olympics in the evening.

Love,
Jeremy


Subject: Simone Update Monday 8/16
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Today I found out that a team at PacifiCorp was given a pot to donate to the charities of their choice as part of an award given them in recognition of their hard work on a new power plant, and voted to donate $2,400 to Children's Hospital Oakland. This wonderful support from so many of my friends and colleagues at PacifiCorp, for the people working so hard to save Simone's life, means a tremendous amount to me.

Simone, for her part, announced last night that she has chosen to donate $150 of her own money to the Leukemia & Lymphoma Society's Team in Training for Darcy Winslow's October 24 run in Simone's honor of the Nike Woman's 26.2 mile marathon in San Francisco. I don't think there are many other 14 year olds, with or without cancer, that would make a choice like that.

Moriah's girl scout troop voted to spend part of their cookie money on a donation to Camp Okizu as this year's troop charity donation, and the Orinda Moraga Swim Club swam laps to raise money for Camp Okizu.

All of these and the other wonderful fundraisers and donations are just fantastic support, which we feel very directly, and are very meaningful to all of us.

Simone was a social butterfly today. She had two gentleman callers; Josh came over at 1, and Russell came over at 3. They all hung out and had a good time until around 5. Josh brought over foot cream that his mom had bought for Simone in Israel. Megan came by and gave Simone a gift she'd bought for her while in Hawaii. Then Robin and Mara Ludmer dropped off dinner, and Mara hung out with Simone for about an hour.

Simone had a blood draw in the morning, and her counts are holding. Her nausea's back, though, and she threw up. Simone also got a beautiful bracelet from my cousin Bethany. And I called my cousin Freddie Brown, a pediatrician in Okeechobee, to make sure he was okay after Hurricane Charlie, which he was.

At night, we watched the Olympics.

Tomorrow is high school registration, which will be tough emotionally for Debby, who will be going in without Simone, who does not want to go in. Debby is still trying to talk her into it, though.

Love,
Jeremy
 

Subject: Simone Update Sunday 8/15
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone was in a good mood most of the day. She had a nice chat with her beloved second grade teacher, Paula Shaw. Simone is looking forward to once again being able to babysit her little kids.

Debby administered chemo. I've called it "erisy" in prior updates, but Debby advises that it's pronounced that though written as ARAC. Still erisy, relating it to Eris (latinized to Discordia), the goddess of confusion, seems preferable for something that saves yet causes her so much pain.

We watched the Olympics mid-day and most of the evening. There were several showings of a Bank of America commercial set in San Francisco's Chinatown, with two shots of the bakery in which Debby and Simone repeatedly insist is visible the spongecake I was unable to find for Debby when I went into SF with James. There was also a car commercial with the tagline, "On the road of life, there are passengers and there are drivers." How about those of us who are hogtied, gagged, and stuffed in the trunk?

I finished Carl Hiaasen's latest, Skinny Dip, which was, as expected, terrific. My favorite line comes when the philandering husband who thinks he has murdered his wife, is acting the grieving husband when talking to the cops: "Inside he was laughing like a jackal." He later takes his mistress out to the Everglades, shoots and leaves her for dead, but she is rescued by a hermit, who, after explaining that he hears non-stop in his head Midnight Rambler sung by Eydie Gorme and Cat Stevens, and recently bit Henry Kissinger's head off a pygmy rattler, says, "point is, I'm navigating a rocky patch in my private life." Not as timeless and all-purpose as the jackal line, but still great. When I told Debby, "Hey, you know what? Inside, I'm laughing like a jackal!" She responded, "Well, don't bring that up at the meeting we have with Simone's teachers."

Simone was happy to see that her cheeks are receding and that "there is a little bit of normal in my face."

Simone says, "I love the Olympics. They should have something like this all year long for cancer kids to watch to be distracted."

Love,
Jeremy


Subject: Simone Update Sat 8/14
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone was in good spirits and talkative in the morning, offering much animated commentary on Olympics events, although complaining of mild bone pain. Generally the day went well, although around mid-day while she was talking to Debby on the phone, Simone lost her balance in her room among the sea of all the small toys Moriah has brought in to surround her nest on the floor beside Simone's bed, falling down and scratching herself on her elbow and ankle on plastic godzllas and tigers. Simone was very upset, and worried that her low platelets will lead to the scratch on her ankle turning into a scar. She was inconsolable for about half an hour, and I brought her downstairs. Despite a very ugly scene with Moriah as I tossed the toys out of Simone's room, during which I was very restrained under the circumstances, if I don't say so myself, Moriah eventually came downstairs to apologize to me and Simone.

In the late afternoon, Debby came home from a fun day of antique shopping with Donna. An hour or two later, Simone started running a low grade fever, breaking 100. Debby checked with the oncologist, who told her to administer the chemo and take her temperature two hours later, and bring her in if she was at 100.3 or above. Her temperature came down, and Simone made the happy gesture of her head as if tossing her hair, even if she has no hair to toss.

Ellen and Steve Ellis dropped by with presents from Hawaii. Simone enjoyed their visit. We then watched the Olympics until she said she couldn't hold out any longer, and she went to bed.

Love,
Jeremy


Subject: Simone Update Friday 8/13
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone was tired, in pain, and sad for much of the day. However, she was in good spirits by the time I got home. Debby dragged her out in the morning, for the distraction and since she'll soon be homebound, until she said she was just too tired to stay out.

In the afternoon, Simone's therapist, Dr. Ames-Klein came. Debby told Simone that she'd get her chemo after she left, so Dr. Ames-Klein offered to spend the night.

Simone is now completely bald, and has just one lonely remaining long eyelash, stubbornly hanging on.

Simone got a letter from the CEO of Children's Hospital Foundation, thanking her for the money she has raised for the hospital through her bracelet making.

I went to work at 4am this morning, and got home before 8pm, in time to join the girls for the Olympics, which they always enjoy watching. Two years ago Debby and Simone went to the Salt Lake City winter Olympics for a few days. Chelsea, a girl going through chemo for A.L.L. at Children's who started a week behind Simone but is now three weeks ahead of her, will be going to the Olympics and seeing the soccer next week, for her wish courtesy the Make-A-Wish Foundation.

Love,
Jeremy
 

Subject: Simone Update Thursday 8/12
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Debby and Simone were back home from the hospital by early afternoon. Simone was happy to be moving on with her chemo, and generally in good spirits. After she got home she drew a very pretty self-portrait of herself with long hair, normal cheeks, and healthy coloring. The pharmacy delivered the erisy, so we now have chemo in the fridge.

The day before yesterday Simone gave me a hug, and it was the first time so far all year that she walked up to me for a hug- so far she's been passively receiving them from hospital beds or the couch.

I had meetings in SF that included people from Orlando, who were anxious about how their homes and loved ones were going to fare in the hurricane. Not to diminish what they are going through, but I thought (and said), "Welcome to my life every day."

Debby called me at work to tell me to come home soon because Simone wanted to watch Soap, which I did, and we all had a fun time watching.

Love,
Jeremy


Subject: Simone Update Wednesday 8/11
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone did get to move on to the next stage of her chemo today, which is very good, although it's sad to think we're happy about our child having chemo. We found out right after she went in for her spinal tap that if she hadn't moved on, she'd need to have a bone marrow biopsy, which definitely would have had us all very worried and upset. So thank you very much everyone for yelling for and at Simone's blood- it worked.

After she was told she would be going in for her spinal, she had to wait for a couple of hours, but distracted herself with her Videonow. She and Debby also counted the remaining scheduled spinal taps on her roadmap- just ten more scheduled, but as we've seen, a lot can happen that's unscheduled.

As she is not yet immunocompromised and 5 South is crowded, they put her in 5 East, in a room with a crying baby and farthest from the bathroom. Since she'll be going to the bathroom every hour all night long due to bladder toxicity from cytoxin, this was less than optimal, and the staff was very nice and quickly changed her room when Debby pointed this out. In the new room Debby also gets a window ledge to sleep in, rather than a chair. This evening, Simone was doing fine.

Love,
Jeremy

 

Subject: Simone Update Tuesday 8/10
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone had a nice visit today from Rabbi Shanks. They prayed together for strength of soul, which Simone asked to do because she's sad, for strength of body, and for her blood counts to do what they are supposed to do.

Simone reports, "I woke up, looked at purses on the internet with momma, came downstairs, and had an egg sandwich. Rabbi Shanks came, which was really nice. My art therapist came and we did acrylic paints. I went out to lunch with momma, Marie, Maddie, Donna and Claire. Then we went to Color Me Mine and I made a little vase. We came home, momma took a nap, and I started reading one of the books that Rabbi Shanks gave me. Then I IM'd for a little bit."

Simone had Debby call me at work to make sure I was coming home soon so we could watch Soap together, which we did. Simone was in good spirits. Tomorrow, Simone goes to the hospital for blood counts, and if all goes well, she will stay overnight and move on to the next phase of her chemo. However, she and Debby are planning on going in for the blood test, assuming it's not a go, and then going to see a movie.

Love,
Jeremy
 

Subject: Simone Update Monday 8/9
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Last night Simone held up a little yellow notebook, and said, "I only write in this journal when I'm depressed, and I haven't written in it in three weeks," handing it to Debby to pack for today's trip into the hospital for overnight chemo. As she gave me a hug this morning, she said, "The next time you see me, I'll be huddled in a little ball, miserable."

Unfortunately (perversely), that was not to be. Simone's blood was not up to par, as I found out in teary phone calls from Debby and Simone this morning. Although she was over the wire in the electronic count, and were told that chemo was a go, which got their hopes up, she failed the subsequent hand count for ANC. So she is scheduled to come back in again on Wednesday, when they will count and try again.

Simone and Debby were both very unhappy and disappointed. Even if Wednesday is a go, at best the first six weeks of ninth grade will have passed before we can even think about having Simone in school part time.

Simone and Debby went into Berkeley from the hospital, shopping on Fourth Street and having a fancy lunch. Simone picked out a plate with a smiley face, which she said she needed and on which Debby later served her dinner. Debby bought a steam cleaner, and when I came home she started steam cleaning, which was a little scary, but she enjoyed her new toy.

Simone came home to a nice gift of a necklace and small purse from the Lamberts, our family in the UK, and Johanna dropped off flowers, which cheered Debby up some, but she is still feeling quite low.

At night, Simone asked to watch Soap, which she said she'll always think of as the show that cheered her up while she had chemo. Kate, who is several months ahead of Simone in A.L.L. chemo, called and she and Simone had a nice, very long conversation, which seemed to really help cheer up Simone. She told Kate how the nurse flushed her double-lumened broviac, "but she did the first one so fast I told her you did it so fast, I can taste it in my mouth, so she did the second one so slowly, that it took twenty minutes. My mom knows the speed I like." She talked to Kate about the mental process she went through at first in beginning to understand that she had cancer, among many other things. Simone signed off by telling Kate how much the call had cheered her up.

Our friend Darcy Winslow is running the Nike Woman's 26.2 mi. Team in Training marathon in SF on 10/24 in honor of Simone. She wrote to me that yesterday she ran a 14 mile training run in 92 degree heat and that the only thing that got her through the last couple of miles was thinking about Simone. I'd have to say that if I tried a 14 mile training run in 92 degree heat, the only thing I'd be thinking of after the first couple of miles would be which patch of approaching sidewalk would be the coolest against my face.

Please join us in yelling for and at Simone's blood to get those counts up so she can move on when she goes in on Wednesday!

Love,
Jeremy
 

Subject: Simone Update Sunday 8/8
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone had a very good day today. She said this morning that since she's had a break in her chemo, she's been having normal, pre-cancer dreams. She said she was happy to wake up with a normal feeling.

Debby is going to bring her into the hospital tomorrow morning for blood counts; if they are good she'll have spinal and overnight chemo, which is what we are hoping for, since we'd like to see her move on to the next phase of her chemo, re-consolidation. Re-consolidation was originally scheduled to be over in time for Debby's birthday (August 20), but we've now blown right past that. So, it is time once again for us all to please politely but firmly yell for and at Simone's blood to bring counts in line as is necessary for her to move on.

For breakfast she made herself an egg sandwich, but got very upset when it wasn't coming out the way she liked it. "Wouldn't you be upset if you knew this was your only chance to eat a sandwich you really liked without throwing it back up for a month?" But with help from mom and dad, the sandwich turned out fine, and she was happy.

Simone also ate some of Debby's spongecake from Chinatown. "Lookit, Daddy," she said as she squeezed the cake, "It's so entertaining."

Our big outing was a trip to Costco. Simone felt strong enough to walk rather than go in the cart. Debby spotted a new book out by Carl Hiaasen, a big treat for me; the corruption, scumbags, and serial killers in his novels are straight out of a case I had in Florida a few years ago when we sued a bank that, unbeknownst to us ahead of time (duh), turned out to be money launderers for the mafia and the Medellin cocaine cartel. In the course of a series of lawsuits and federal investigations that spanned a decade, the bank's attorneys went to prison and several people that could have been interesting witnesses had they talked were murdered, including one guy buried up to his neck in cement in the Everglades and left there, until his skeletal remains were "discovered" a few months later by a hunting party of doctors. The bright side is I developed a taste for key lime pie and dog races. We also bought tourguides for NY and Paris, two proposed travel destinations for next year.

In the afternoon, Michelle Holtz came by with presents from Ben, including an Army ration pack, against which she can favorably compare hospital food (actually, the Children's Hospital food is pretty good), and a t shirt signed by the Delta dogs (D company) of the 502nd regiment of the 101st airborne, which has been decorated for combat action eight times since Ben's been in, something about which I am sure Michelle would prefer to avoid thinking about too closely. Ben has also been trained in air assault, and started a mock task force in his unit called, after the people in the unit who wear or have tattooed their blood types, the Holtz Positives. Simone is designated the minister of youth civilian operations.

After that, we read, although Simone handed her book to Debby to check out to make sure it had a happy ending, since she didn't want to read anymore unless she knew things got better for the characters. They didn't so she looked through the NY guidebook, immediately turning to dining, and selecting Alain Ducasse, "but a lot of these restaurants sound gooood."

Unfortunately, she now can't eat for the rest of the night, just in case (we hope) she is having her spinal tomorrow.

Love,
Jeremy


Subject: Simone Update Saturday 8/7
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone was in great spirits today, although her legs hurt her since her muscles were sore from all the walking they did yesterday. It was wonderful to hear her start the day coming into our room and saying "I smiled so much yesterday that it hurts to smile this morning."

Simone and Debby went shopping on ebay for mystic topaz jewelry. I sat nearby and enjoyed the chorus of "ooooohs" as they viewed items they liked. Simone batted her lashless eyes at Daddy and a nice bracelet is on the way.

Debby took Simone out to go clothes shopping, run errands, and have lunch. I wasn't too thrilled at being separated from her for such an extended period over the weekend, but she wanted to go out, could go out, and Moriah was sick and had to stay at home.

So they went out and I put Mozart string quintets on the stereo and started Oswald Spengler's Decline of the West, which I've wanted to read since High School. So far, it's an entertaining answer to Hegel, but his organic model seems even more anthropomorphizing than the teleological. However, I can identify with his outsize ego- he says that he has "almost accidentally" discovered "the secret of world history itself." I guess no one can accuse the Germans of not having Big Ideas.

Simone returned with Debby around 3 and was very happy with her loot, which included a purse made of woven seatbelts, CDs, Nike socks, cute new shoes with zippers on the sides, three belts, four skirts, and four tops. She was too tired to do a fashion show for me when she got home, though. She said, "The whole time I was walking, I thought Dr. V. would be so happy."

Jonathan Winslow dropped off a box of magic tricks, that he had performed when he was young, for me to perform for Simone- and it is great to have fresh material for my repertoire, even though Simone is infinitely too polite to say so!

We watched "13 Going on 30" and then more episodes of Soap- we've now started into the second season. Debby worked on Rachel Whittom's talis cover. Simone was very happy and laughed a lot. Around 8:30 she hobbled upstairs for a shower and bed.

Love,
Jeremy


Subject: Simone Update Friday 8/6
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Today Debby took Simone into San Francisco, first to Chinatown, and then shopping at Paul Frank.

They had lunch on Maiden Lane. Debby picked up the sponge cake she likes at a bakery on Grant Street and scolded me about not finding sponge cake for her there when I went into SF with James last week. We went in, but neither of us could find the spongecake. Debby took pictures of the front window and counter, where she says there were rows of spongecake, to show me.

Simone says, "I walked all day. We went to Chinatown. Sarah came with. I bought a little iron pot, a t shirt and a present for mommy. We went home, and Moriah came home. I read a book for an hour. Then there was a knock on the front door, and the McGrath's sent a giant arrangement of balloons, that was very nice. Then we dropped Moriah off at your office. Then we went to the Wilkersons house. We drove for an hour and a half in traffic to the baseball game where Jeff pitched. Momma was acting like a kid the whole time and I was acting like the adult. [Debby says, "that's because I didn't like the way the umpire called some of Jeff's pitches! And I also blew raspberries at all the batters."]. Then we drove back home. I was half asleep."

After they got home, Debby flushed her broviac, and Simone asked, "How come no nurse can flush like momma?"

In Portland, a group of us went to watch a different Jeff race his motorcycle at the Portland raceway on the way to dropping me off at the airport. Speaking for myself, I wouldn't find enticing any activity with a fleet of ambulances standing by, but Jeff was having a great time.

Debby had dropped Moriah off at the office so she could take Simone to Jeff's baseball game, and Angela looked after her until I got back around 5:30. When I arrived, Moriah said expansively, "Daddy- give a hug!"

Love,
Jeremy
 

Subject: Simone Update Thursday 8/5
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone says to report that she was in good spirits today, and generally she was. She had a visit with with her therapist in the morning, followed with a visit from her art therapist, and a nice talk with Jordana Katski.

Unfortunately, the start of the reconsolidation phase of her chemotherapy has been delayed until Monday at the earliest, due to low platelets, which means that her ability to return to school, as well as the return of hair, eyebrows, and eyelashes, to say the least, has the same delay. She took it in stride, though, since it means she should be feeling pretty good this weekend, and we are discussing what she'd like to do. She told Debby she wants go into the City to go to Chinatown tomorrow. I'm a little worried about how she'll do on the hilly streets and the germs from crowds, but her ANC counts are good, so we'll see. As for me, I was in Portland today on business. In the rush to get to the airport, I forgot to put my belt on; for the past couple of months my weight has stabilized at down 42 pounds this year, but I have yet to go clothes shopping, so until I could get to Nordstron to buy a new belt, while walking about I had to puff my stomach out to keep my pants up.

Simone loved the dinner Arlen made for her. Then Simone said she wanted some exercise, so she accompanied Debby for a little grocery shopping. After Simone and Debby got home, they seized the opportunity of my absence this evening to watch Oliver. Even though I've accepted having to watch the reality TV programs, like Survivor or The Newlyweds, that Debby and Simone like, I absolutely draw the line at musicals. So they chose Oliver because things start off very badly for him before they all turn out okay.

I have been feeling pretty depressed for the past couple of weeks. The situation is not something I can get used to- who could?- and rather than adjustment I feel cumulative trauma- starting each day without having recovered from the day before. Friends sometimes act strangely in response to cancer, but my friends are being wonderful through the whole ordeal- every one who I thought would be there for me has been, and some very special friends have been especially supportive, about which I am very happy, because it means I have very good friends. So I will confess that the main reason I had wanted to go up to Portland just now after having been relatively scarce all year (normally I go up two-three times a month) was to be with some of these special friends, and while in Portland I had a couple of nice visits with friends during the day between business meetings, and in the evening several of us went out to the Pearl District, a restored part of downtown where the galleries are open late once each month for "first Thursdays," for what was probably my first night out with a group of friends for awhile, if not so far all year. I had a good time, and I am feeling in much better spirits tonight than I was this morning!

Love,
Jeremy


Subject: Simone Update Wed. 8/4
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Simone was in pretty good spirits today. She says, "I saw Spiderman in the morning with momma. Then we ate in a Japanese restaurant, but couldn't have sushi, and it is a terrible thing to eat in a Japanese restaraunt and not eat sushi. After we had lunch we drove to Alamo Plaza to get pizza for Moriah, and after we got home we read books, instead of watching TV."

Simone liked the movie and said it had good spidey effects. Debby really liked it and thought it was better than the first- "action-packed and emotionally satisfying after all the angst in the beginning."

Simone has decided to write another book (I have yet to type up what she has written so far on the manual for residents) called "My Friend has Cancer: Questions You Are Too Afraid or Embarrassed to Ask" She says, "one section will be- when to come? Sometimes it's better just to show up, since if you ask teenagers would be too worried about their looks to want to see them but if you have really good friends, they won't care what you look like." Monie said she could draw illustrations, such as of the broviac, since the photos would be too gross.

Simone wore Pink Panther t-shirts today and yesterday. Debby worked on needlepointing Rachel Whittom's talis cover. Simone is happy that her weight is now up to 102.

We talked about my plans to take her to New York this spring. I told her that Manhattan was bought from the Indians for $24. "I would have offered $300. And it wouldn't now be called New York." Tomorrow's update will probably come late, so do not worry if it doesn't show up until Friday.

Love,
Jeremy
 

Subject: Simone Update Tuesday 8/3
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Last night in honor of James's last day up this summer I let Simone and James stay up late to watch together Ferris Bueller's Day Off. Debby had already gone to bed after giving Simone her pills, and James came up and woke me when the movie was over so I could carry Simone upstairs. After she went to bed I stayed by her side and we talked for awhile, and she discussed how important her extended family is to her.

Moriah did her horseback riding and my mother left with James. Laurel drove my mom to and from the airport, which was great. I unfortunately didn't get home from work until after 10pm.

Simone reports, "I actually had a very busy day today. I saw my art therapist, then I sat with Grandma and James for awhile, and then ate Subway. Surprisingly, James got an upset stomach from his meatball sandwich. Then my math tutor came. After that, we left for horseback riding, since I didn't want to be alone after Laurel picked up James and Grandma, since I would be very sad and cry. So we said goodbye to Grandma and James. When we got back from horseback riding I was sad that James and Grandma left. I wish I could have done more with James. Then momma and I watched TV and had a little snack. Momma's group loop was canceled, because there were not enough people. I went upstairs to my group loop, but there were no kids, only therapists, who asked me how I feel. I decided to have a quesadilla with avocado and miso soup. Then we watched MTV shows, and then Daddy came home. I also played with my laptop. I love it."

Love,
Jeremy
 

Subject: Simone Update Monday 8/2
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

In the morning Simone and James watched Planet of the Apes. Simone then IM'd her friends while James watched some of his favorite Monty Python episodes. My mother flew up to bring James home with her tomorrow. Simone was generally in good spirits, although she cried over her appearance as she tried to put on make-up so she'd be pretty for Grandma, but recovered and over dinner was an animated conversationalist. The laptop I bought her for High School arrived, and she was very happy about that, and after dinner gave it a test-drive with James.

Love,
Jeremy
 


Subject: Simone Update Sunday 8/1
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

Debby and Simone got home from the hospital at 2:15 this morning. Simone was energized from the transfusions, and she and Debby watched some TV before going to bed. I had fallen asleep downstairs waiting for them, and went up when they said they wanted to stay downstairs for awhile.

Simone woke up with pink cheeks this morning, which was nice to see. I brought Simone downstairs and then took my nephew James into Berkeley to walk around the campus and town, as I thought he may as well see where he and his younger siblings will be going to college.

After James and I got home, we all went out to Target for an errand. Back at home, we watched Frankenstein and Bride of Frankenstein, both of which fully engaged Simone. Generally she was in good spirits in the evening.

Love,
Jeremy


Subject: Simone Update Saturday 7/31
To: "Jeanette Gross" <jeanetteg@earthlink.net>, ellis.family@sbcglobal.net

For the next three weeks, while Jeanette is on vacation, I will be sending the daily update on Simone out directly. My mailing list is not completely congruent with with Jeanette's, so if you haven't been getting these before, this is an update I write every day to let our friends know how Simone is faring in her chemotherapy for the acute lymphocytic leukemia with which she was diagnosed at the start of this year. The previous updates are collected at Simone's website, of which Jeanette is webmistress, at http://caringbridge.org/ca/simone . I also have not used the mailing list feature of my ISP, so I hope this works.

In the morning Simone was strong enough to check her email, and wrote at length to Lauren. She was unhappy at the initial slow draw of her blood from her broviac, but it soon lowed freely, and Debby drove the sample down to the lab. We went out to the Willows to buy Simone a pair of shoes and some trading cards for James, and then to Elephant Cafe for lunch. Moriah's current loves, carried with her everywhere, are a small Godzilla and larval Mothra, which are especially appetizing at the table.

We came home and were told that Simone's blood work indicated that she had to go into the hospital for transfusions, about which she cried. There was insufficient staff available in the isolation ward, so Debby drew a sample of her blood and drove it down to the hospital so they could get started on a cross-match, while we watched Spy Who Loved Me.

Right after the nurse shift change at 7, the hospital called, and she and Simone went in. After much argument with Debby on what I could watch with James (my mistake was being seen picking out movies before Debby left), which included two calls to my sister, James watched Shot In the Dark.  I read G.K. Chesteron's excellent The Man Who Was Thursday, which I really enjoyed. Then I took James along for my nightly late night walk with Moriah. Debby called to say Simone needs two units of blood, and that they would be home some time around 2am.

Love,
Jeremy
 

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