WhatsUpWithJacob

We're out! Jacob decided we should go out to dinner at Benihana's to celebrate, so we did. We're a bit bedraggled, but over-all much encouraged. The chemo session went so vastly much better than the last one. And we had great roommates (and wonderful nurses...)

Tomorrow we have a meeting with the whole bone marrow transplant team. Slowly things are coming into focus.

Thanks, as always for all your support.

Breakfast, Second Breakfast, Lunch, Dinner, Second Dinner. Jacob spent most of the day eating. He has gained Six pounds since last week. I didn't expect him to be this interested in food during chemotherapy. Probably the Decadron. He has gained about half of the weight he lost over the last 5 weeks.

Kyle T.L. and Adam C. came to visit. Jacob is starting to feel well enough to enjoy visits of the high energy kind.

Ann and I hope that he will be feel well enough next week to bounce about the house and neighborhood in typical Jacob fashion. Perhaps he can go back to school later in the week.

We are pulling together all the various Jacob data. It is looking much better. The last blood tests show tumor markers in the normal range.

Jacob is recovering his delicate sense of humor. Since he is 12 years old this means he will laugh if someone makes a rude noise. While this may seem to be a minor thing, it is really important. It took alot to make Jacob laugh 10 days ago. One had to pretend to be a ballet dancer, mention the word tutu (as in desmond) and then dance around frantically in a really bad imitation of the nutcracker. This would be greeted by a grudging smirk, and a 'it only hurts when I laugh' look.

Now Jacob is able to display a wide range of amused looks, chuckles, and the occasional belly laugh. This is most heartening.

We watched Monty Python's Holy Grail. This is a marathon funny thing, and is not well tolerated by the humor impaired. Jacob really enjoyed it, this time being partial to shrubbery and rabbits. By the end he was a bit worn out. Probably should have stopped after Arthur was badly taunted for the second time.

A few hours later we were on to Zoolander, I was found I was flagging. Jacob had his second wind. Zoolander is difficult because you have to hold a complex construct of a richly absurdist world being navigated by the profoundly stupid. It is a distopia where Ionesco meets the Soupy Sales. Jacob found it vastly amusing.

I tried to talk to Jacob about the meaning of 'Team America: World Police' several months ago. His reply was that its goal was to destroy meaning, to be an antidote.

Good to see he is back in form.

Jacob was tired of wandering around in World of Warcraft. He likes his character, and the pet bear, but is stuck on his current level of the game. Ann found that our friend Barbara's son Jared works on Warcraft, so Jacob can call him and see what is possible to do on this level. Jacob would like Ann to quit discussing his course of treatment around him. He explained that he knew what it was, understood it, and just didn't want to hear it explained over and over again.

Jacob can hear Ben and his father (our room mates) play Nintendo. He knows from the sounds what game they are playing and how they are doing. Occasionally he offers advice. They invited him over to play with them.

Ann and Jacob wander around Two North. Ann brings Jacob's IV rig, wheeling the pole, trying to keep up with Jacob. They have been stuck on the second floor for a while now.

Our oncologist, Dennis Kuo, came in today and gave us a full background on the plan for Jacob's treatment - upshot: I feel a million times better knowing what's what and Jacob is well and truly bummed (but beginning to adjust, or at least commencing to begin.) you'll see why in a minute.

The scoop is, he'll have an MRI after round four of the chemo, and if it's clear of visible cancer, we'll move on to the stem cell transplant. If not, he'll have two more rounds and check again.

The cells will have already been harvested from Jacob's blood in a painless process called "aphaeresis" which Dennis says takes about the amount of time of two romantic comedies or one epic saga type movie. That will happen soon, in the next few weeks.

After the last chemo, we wait for his blood counts to recover, and then check into the hospital. He gets a week or so of very high dose chemo, and then when all the last remaining bad guy cells have been wiped out, he'll get his own stem cells back.

Then the hard part starts: those stem cells are essentially seedlings that have to regrow his entire immune system, which will have been entirely destroyed. For the next three to four weeks he'll be in isolation in the hospital while they "engraft," i.e. get down to business. There are quite a few risks during that period, but Jacob is tough and the team here at Packard is great, so I'm sure he'll make it.

But here is the part that bummed Jacob out: after he gets out of the hospital there will be another 100 days of isolation at home. In fact it won't even actually be at home, because we have to be within 20 minutes of the hospital, meaning we'll probably move to the peninsula for the summer. Friends will be able to visit, as long as they are completely healthy, wash their hands etc. And he'll be able to walk out side in areas away from the public, but no restaurants, movie theaters, airplanes etc. As Jacob said, "there goes my whole summer!"

All that said, Jacob had actually a pretty great day, including a stroll downstairs (actually down-elevator) to the cafeteria, sitting up in a chair to play World of Warcraft and eating take-out Chinese food for dinner. He's up for very short visits and phone calls. We'll be here until monday.

Jacob spent most of the day eating peach yogurt and playing his new online game. He is a Dwarf Warrior with a pet bear. He and his pet bear hunt for other animals. His skill level must be pretty high by now, he started at 4:00 am when he started his chemo (Paclitaxel) and played continuously for 12 hours. He did interupt his play to acknowledge visitors (briefly).

Jacob is doing well today, on the way to the hospital he talked about snow boarding with his brother, Alex. He was in a great mood, and has been eating and sleeping well for that last few days. He had surgery this morning to place a hickman catheter. This is a port that provides easy access for chemo and other meds. The oncologist also collected some stem cells from his bone marrow to see if they were clear and viable for later harvest for a bone marrow transplant. He woke up in the recovery room and was hungry and impatient. He was mollified by fried chicken and shrimp dumplings (his specific request) while still in the recovery room. I don't think I have seen anyone, an hour after surgery, completely devour such a quantity of food. After this, his view of the world improved, and we moved to his room in Two North. He will start the first dose of chemo at 4:00 am. Ann and I are hoping that since he is starting this round feeling a bit better, that he can recover from this round and be stronger next week.

Jacob's still pretty weak. He went to school for a few hours on thursday and really enjoyed it, but it exhausted him so much he was in bed most of friday.

He lost a lot weight, so we're trying to get him fattened up to face the next chemo on tuesday. He'll have surgery first to get a central line implanted and have a bilateral bone marrow aspiration, and then go upstairs for five days of chemo.

I am posting Ann's journal on Jacob's brain tumor, so that there is a place people can go for a update on how he is doing, and get the background on what has happened so far. Ann wrote all of the postings, I just started the blog.

We got sprung from the hospital yesterday. By the time it was over Jacob had lost between 6 and 7 kilos, depending on which scale you weighed him on - either way, he's thin, and weak. He's really realized it's his job to eat, and he's trying a lot of different things, but it's so hard to get enough into him to make a difference. He thinks he wants something, and then after taking one bite, says he can't do it.

At least his back isn't hurting, though now he has a lot of pain in his belly. They did an x-ray and it looked like it is just constipation, so they gave him a lot of stool softeners and finally a heavy laxative. He had diarrhea for more than 12 straight hours, and still hasn't fully recovered

Well, we're back in the hospital. Jacob started running a fever yesterday and they had us come in to emergency. He has pneumonia and off-kilter electrolytes. He ate a little today, and his sodium and potassium are beginning to come back up, but it's tricky to balance things and they have to go very slowly.

I knew he seemed sicker than just the after-effects of chemo, but it was hard to quantify. Anyhow its a relief to be here and having it taken care of. He's way pissed, but since he's sleeping most of the time, only intermittently. I think we'll be here at least a couple days more, maybe longer.

Oh, god I hate to write this, but Jacob's tumor has come back. It happened really fast. A week ago last Wednesday when I was dropping him off at school I thought I saw something funny in his gaze, and by the time I picked him up it was obvious that he couldn't look up. We took him in the next morning and they confirmed it.

He finished five days of chemo Saturday, and they sprung us from the hospital around two thirty. Jacob is already much better, just being out of that environment. It was pretty awful. He came down with a virus, fever and cough just as we were being admitted on Tuesday so he had the triple whammy of the tumor itself, the virus and the chemo. Under the circumstances he tolerated the new, more powerful, drugs well, but it was hard to see him so weak.

His back is hurting badly for some reason, so I'm taking him back to the clinic today to see what is going on, but he can walk and talk, which is an improvement over last week. Now if he could just eat. He has two weeks to recover before the next one, and we hope he'll start back to school an hour or two a day sometime later in the week.

The good news is, the tests showed that the tumor hasn't spread anywhere new in his body. The bad news is the tumor in the pineal area is a lot bigger than it was before, and presumably more aggressive, so we just have to see how he does with these new drugs. Just now, he told us that his double vision is getting better and he can see without the eye-patch he's been wearing. That's really big news; almost certainly means the tumor is shrinking. The plan is now that he'll probably have four to six rounds of chemo and then an autologous stem cell rescue (aka bone marrow transplant.)

We are safely back from our wonderful trip to Hawaii. What a fantastic job you did putting it all together. It exceeded each and every expectation we had (and all those cards and gifts ahead of time had built up some pretty big expectations!)

I just heard the sound of Jacob blowing the conch shell that a Hawaiian named Ali Kai Kinimaka gave him while we were on our kayak trip. We had taken the kayaks down the Hanalei river and beached them at the beautiful Hanalei bay when this fellow called Jacob over and gave him the shell. Our guide was completely blown away; nothing like that had ever happened before. Evidently Ali Kai is from a very old and important native Hawaiian family on the island, and it was a tremendous honor. You should have seen Jacob glow. It was one of the magical moments.

The sailing adventure was great fun. Jacob and his friend, Franklin, got seats right away on the "trampoline" stretched across the front of the boat so that they could see (and be splashed by) everything. We saw dozens of leaping dolphins, turtles, whales and one very rare endangered monk seal (actually, they saw the monk seal; I didn't.)

The hotel suite was another lovely surprise. I wish now I had taken photos inside: it was huge, beautiful and it had a full kitchen, which was a great and practical luxury.

We did skip the Luau (we called ahead to let them know we weren't coming) and had a relaxing day on the beach. The kids had a lot fun building an impressive hut from driftwood and palm fronds lashed together with seaweed and bark. The picture attached is Jacob peeking out from the fronds of it. The thing was still standing the next day despite the wild winds and surf.

Jacob finished the last round of chemo end of August. He's had two more MRIs confirming that he's in remission. He started radiation Monday, and he's already completed four sessions - more than a 10th of the way through the whole five-days-a-week-for-6-weeks thing. If everything stays exactly on schedule (not particularly likely) he'll finish Oct 22 - the day before his 12th birthday. There's a link to pix below.

He did really well with chemo - made it through all six sessions without a single blood transfusion, fever or extra hospital admission (all the chemo was in-patient), which, I guess, is some kind of record. When he wasn't in the hospital he biked and skateboarded and boogie boarded and played video games with his friends in the neighborhood.

The last session chemo was hairier (though Jacob is not), both because the toxicity had built up so he was sicker, and because he was really tired of it. He had a loony drug reaction during which he figured out how to raise his bed half way to the ceiling and then fell out of it while I was out of the room looking for a broom to sweep up a bowl of cocoa puffs he'd spilled.

Our room-mate pushed the emergency button, so seven nurses and two docs came tearing down the hall in full adrenalin mode. Poor Jacob was on the floor: crazed with benedryl, all the wind knocked out of him, more than half naked and surrounded by cocoa puffs which crunched under the feet of all the emergency responders. But he was fine and it's done, done, done.

Radiation is scary - the machine is hugely out of human scale, and it swivels silently and smoothly around him like a industrial robot, which i guess it is. I watch on a monitor from a control room. They are able to shape the beam incredibly tightly so only the parts that are meant to be irradiated get zapped. Unfortunately, that includes his whole brain and spine. He's been nauseous from the first day, which isn't great, since the effects are supposed to be cumulative. But the technicians are young and fun, and chat with him about music and video games, and the whole thing only takes half and hour, including waiting room time (Jacob's least favorite thing.)



He's back in school nearly full time, and seems into it in a way he hasn't been in the past. I have high hopes for this year, academically, which I didn't expect to have. Last week he went to a three-day camping trip with his class. He had a blast. A raccoon climbed on one girl's head during the night (or on the tent above her head) and she screamed a lot; that's the main thing I heard about, so far. It was almost surreal having him gone after being with him almost 24 hours a day. I thought I would be nervous, but I wasn't. It helped a lot that his blood counts, which had been pretty low, staged a comeback just in time.

Ellie's all moved into her house. Alex and his girlfriend Letty went back this weekend and helped her paint. See pix of the kitchen cabinets - cherry red, and the walls are green. She likes her graduate program, especially her game theory class. Her boyfriend, also named Jacob, just got a job that will allow him to stay in Philly, so she is thrilled. She really likes this guy.

I'm not planning to go back to work until radiation is done, but luckily I have a couple things lined up so I don't have to feel entirely irrelevant to the working world.

Young's company got new funding which is good, but it meant that he had to take over as VP of engineering, but he's being a pretty good sport about it.

Our dog, Sparky, learned to bring the tennis ball ball right back to your feet when you play fetch. He's a pretty great dog.

We came home from the first chemo Wednesday evening and it went pretty well under the circumstances. Jacob even said it wasn't as bad as he expected (though obviously no picnic!) The nursing care at Stanford is incredible.

I still get a bit of a shock when I look at him, but it's getting much better. He's still got a knob on top of his head where fluid has collected under the stitches, but it's getting smaller. He's lost a bit of the 20 lbs he put on, and the acne is running its course (both are from the steroids, thankfully now finished, so they should go away by themselves, as should the bump for that matter.) Now I know what my mother meant when she said "bless your pointed little head." For now, he's still got his hair, though it is very short and brown, since Ellie shaved off what was left of the blue.

I spent yesterday coordinating lab and nursing services, follow up doctor visits, insurance and pharmacies; Young is having a rough time - he needs to DO something. Just sitting around and waiting makes him crazy. Mostly that is what we need to do, though, since Jacob is healing himself (of course we give him his meds, take his temperature, drive him to appointments, etc. - it just doesn't seem like enough.)

Young did go and visit Wilkinson, a tiny private school in the neighborhood today, that might be a better option for Jacob next year than returning to Nueva. There are evidently going to be some neurological problems post treatment that might make his existing learning issues more difficult, so he may need more one on one treatment. He was already there at Nueva a little bit on sufferance pending required Slingerland summer school and intensive tutoring. Do any of you know anything about the Wilkinson's? Jacob's old preschool teacher, Tish, had worked with them on some state preschool issues and liked them a lot.

We finally saw the oncologist Wednesday, and he was terrific. We'd already heard that he was tops in the field, both as a neurologist and as an oncologist, and it turned out he's one of the authors of the study Jacob will be on, and knows it inside and out - including knowing which aspects are set in stone, and where there might be wiggle room. I felt really confident he would never steer Jacob into anything just for the sake of a protocol.

Best, the guy was great with Jacob, starting with really listening to him to understand how much he knew already, and then telling him everything else. Even the hard stuff, like the fact that Jacob will probably be sterile, the memory impairment, the word "malignant", he told in a way that made it real, but not overwhelming for us or for Jacob.



At the end I took Jacob out for a walk while Young and our friend Luika Timmerman stayed to ask questions. The doctor told them Jacob has a good chance of a cure and Luika, who is a breast cancer researcher, said oncologists never use the word "cure". So that was positive.

Now we know where we stand: Jacob goes in to Packard Children's hospital at Stanford tomorrow to start chemo. He'll be in for three days, probably, and back to school the following week if all goes as planned. Alternate cycles will be five-day stays. They are going to do six cycles at three week intervals, then evaluate. After that there is a very high dose option with stem cell rescue, but he might not need it. Radiation is certain either way.

I conked out for 2 hours as soon as I got home from the doctor, but I'm really okay. I'm still so feeling so lucky he made it through the crisis with the hydrocephaly, that I feel more grateful than put upon. Right now there is a lot for me to do to take care of Jacob, which keeps me occupied. He's got a lot of fluid under the incision from the shunt, and he needs a lot of watching.

Young is doing research like mad. We have a number of friends who are researchers at Stanford and UCSF, so he's getting a lot of help, and it has given me confidence that this is really the best treatment. I'm kind of letting information seep in a little at a time and concentrating on what is needed at the moment.

4/24/04
Jacob has a brain tumor. A one centimeter mixed type pineal germ cell tumor. We found out a little over a week ago after he'd had a week of horrendous, debilitating headaches. They started on Easter Sunday while we are Susan's for a Passover dinner. He started throwing up Monday and his eyes were so sensitive to light we closed the blinds, and layered first one then two sheets over the window.

I took him to the doctor Wednesday (Dr. Greene wasn't available) and she diagnosed it as a migraine and prescribed Imitrex, but it didn't help. I took him back the next evening and saw Dr. Lloyd who gave him a shot of Demerol "to break the pain cycle," still thinking it was a migraine. By midnight the Demerol wore off and Jacob was in pain again.

Friday morning I called the clinic before they opened, asked for the advice nurse and told her that they had to do some imaging. I must have sounded serious because she went and found the doctor, Dr. Strain, who'd seen him Wednesday, and she wrote the order for a CT. We went directly to the CT lab, then back to see Dr. Strain.

Dr. Strain started by saying she was sorry, but the radiologist had seen a mass on the CT. We had to go immediately to the ER at Stanford, and see a doctor named Cheshier. A weird cold sensation ran down my nerves, terror, I guess, but I asked for directions to the hospital and we got up and walked to the car.

We waiting for a while, but eventually Jacob got a bed and Dr. Cheshier came and saw him. We had lugged the CT scans with us, and he put them on up the light box. I could see the mass, a big white spot right in the middle before he even told me what to look for. Then he said the real problem was that the ventricles, fluid filled cavities in the brain, were far too big. The tumor was plugging up the flow of cerebral spinal fluid. That is what was causing Jacob's pain.

He needed to go to the PICU at Packard Children's hospital, but there weren't any beds so we stayed in the ER the rest of the day. The ER nurses put in an IV and started monitoring him. They were great. One had had a child with cancer and gave me a lot of encouragement.

Jacob's hair was blue. Ellie had taken him to a salon in the city to have it dyed as a Christmas present, and I'd taken him back once since. Everyone in the ER noticed and remembered him.
When Ellie arrived, the front desk started to give her the run around, but when she said she was looking for the kid with the blue hair they brought her right back. It was so good to have her there.

Young was in Seattle, teaching a class on technology in the fine metals department. I called him and he got the next plane out and was with us amazingly quickly.

Ellie had gone and gotten our puppy Sparky into a kennel, a complicated undertaking which required her to take him first to the vet for a kennel cough shot. He puked in her new car too.

Once we were in the PICU, things started to feel more under control. The first night they were able to give Jacob painkillers. Tylenol with codeine and, I think it was Fentynal, but maybe that was for something else. Later they needed to watch his pain response so all he could have was plain Tylenol.

That was on Friday. He was so sensitive to light that the nurses turned off the overhead lamps and draped a baby blanket over the lamp they wrote charts by. Even so he kept a blanket over his head until Letty got him a sleep mask.

They were waking him up every hour for neurological checks. One of questions was, "Do you know where you are?" A couple of times he answered, "in the Belly." When we asked, "what?" He tried to explain, "In the belly of, in the belly of the, in the belly of the…stomach." After a while he got so used to the exams that he would go through the grimaces they usually asked for as soon as he woke up.

By Saturday night his pain was getting unbearable, and he seemed only partly conscious ( it was hard to tell with the mask over his eyes) and his pulse and respirations began to drop. Alarms were going off more and more often. We would talk to him and rub his chest the numbers would come up for a while. After a while, it was getting harder to rouse him, and the Neuro-surgery resident came in and said they were taking him to surgery. It was just before midnight.

They had wanted to hold off on surgery until Monday when the head neurosurgeon was there and they could do a more permanent shunt, but the intracranial pressure was too high to wait, so they put in an extra ventricular shunt - a narrow plastic drain tube coming out of the top of his head. It snaked to a pouch on an IV pole with an oddly graduated device for sighting along, to keep the pouch at a certain elevation relative to his head.

When he came out of the anesthesia, he was Jacob. The pressure was relieved and he had no more pain. He didn't need a mask over his eyes. He was hungry! though he was still on liquids only, since they knew he had to go back to surgery. He started making up songs about steroids.
On Monday they did the 3rd ventricular shunt - basically tunneled from the third ventricle to the surface of the brain.

The thing he complained the most about was being hungry (he's on steroids.)

Knock on wood; the internal shunt is working, which wasn't such a slam dunk, so we feel pretty damn lucky. They took out the external one yesterday and we got to come home from the hospital today. His balance and eye-tracking are a bit off, but he is the same loveable, maddening, funny Jacob as ever.

When they put the second shunt in, they also gifted him with a medi-port in his chest, so he's all set for chemo, which probably will start a week from Monday.

In the meantime we are sleeping in our own house for the first time in nine days.

We had such a flood of love and support, its unbelievable. It really changed Jacob's experience, maybe his life, to find out how many people loved him, and it carried us through, too. Ellie and Alex and their partners, Jacob and Letty, have been with us, along with my sister and Young's brother and his family and many friends. One of Jacob's very best friend's mom threw him and his sister in the car and drove down here all the way from Eugene, Oregon to see Jacob, and us.