WhatsUpWithJacob

Well, we're warned by other parents that the 7 to 10 days after the transplant would be hell. And they are. Today was day 4, so we're getting there.

Though the unpleasant details (which I will spare you) were worse, Jacob was conscious a few minutes at a time today, and he could stand by himself for a few seconds without falling over. He sleeps most of the time and he's still too out of it to watch TV when he is awake, but Ellie and I are taking turns reading the Count of Monte Christo to him. A lot of the time we can't tell if he's awake so we just keep reading.

Young did the last two nights, and I'm on tonight. Ellie's been with us most of the days. What a girl.

The nurses and doctors are incredible. There is so much to keep track of I don't know how they do it.


Meanwhile back at the ranch, the kids have been doing a wonderful thing, painting my bedroom. I don't have any pictures of the colors, but here are some of the meticulous prep work.

Letty shrouded my bedroom in protective plastic to contain the dust and dirt and who knows what.



And Alex ripped the hideous driftwood off the wall.

As the doctors warned he probably would be, Jacob's now neutropenic and spiked a fever during the night, so he's back on antibiotics, blood cultures and chest xrays (which they come and take right in the room!)

His pain and nausea from the mucusitis are getting steadily worse. He has a PCA pump that give him a constant dose of pain meds with button he can push to get extra when needed. They've been raising the dose regularly, and he's able to sleep some, but Young and I are trading off nights and days because we can't sleep while taking care of him.

He's still thrrowing up a lot even though he isn't taking anything by mouth and between the medications, blood transfusions, and TPN (total paraenteral nutrition) he's got five IV pumps on his pole, so the odds of one of them beeping is pretty high.

Yesterday Ellie was able to get him moving.



He played Monopoly with Letty and Alex and took a nap before his friend Wes and Wes' parents, Tammy and Grant, visited.



I doubt he'll be up for visitors today though.

Jacob had his stem cell transplant yesterday and it went fabulously.

Everyone sang happy birthday to him in honor of this rebirth.

First his stored cells were thawed in a warming bath.



Doctors Dennis Kuo and Rajni Agarwal meticulously checked each bag.



Then his nurse, Lubena, hung them and started the line. Jacob was playing video games the whole time.



Transplant nurse practitioner Lizzie Callard stood by with a whole armamentarium of drugs to treat any possible reaction.



But he sailed through with no reactions. Everyone there, doctors, nurses, Ellie, Aunt Susan and I, were grinning and excited. I told Jacob how proud I was of him and he said impatiently, "Mom, I just lay here."

Young came in with a "birthday" present: a remote controlled blimp, which they flew all over the room.



And to complete the jubalation, Ellie received the notification yesterday that she past ALL of her pre-lim exams, and doesn't have to retake ANY thing, which means she is officially a PHD student, and that she can stay longer this summer. You should have seen her jumping up and down.

The chemo side effects are getting worse, as expected. Jacob isn't eating or keeping much of anything down so Lizzie decided to start "TPN" nutrition through his IV today, rather than wait til he lost any more weight.

Several people have asked me why things get worse after the stem cells. They expected them to help. The answer is that they do help; in fact they are saving his life. The chemo was so strong it would have killed him without them, but it is going to take around 10 days for them to "engraft" in his bone marow and begin to do their job producing more cells.

In the mean time, the chemo, beside destroying the cancer, destroys Jacob's original stem cells and other fast growing cells in his body like hair (not that he has any) and the lining of his mouth, throat and stomach, So he's going to be pretty sick for a while. But he's having good times in between. I take back every bad thing I ever said about video games.

Yesterday was an important day in a bunch of ways. For one thing, amid much anticipation, Ellie arrived!



And our friend Ben was released from the hospital to go home after his bone marrow transplant. This is really inspirational because they went through chemo pretty much at the same time, and Ben only had his transplant the first week of May. This is a picture of Ben's family waiting to go.



And it was the last day of of high dose chemo.

Today Jacob's really beginning to feel the effects. He's more or less stopped eating and slept most of the day, but he rallied to play an xbox game with his friend, Franklin, for nearly an hour.



And under some duress, he took a short walk on the patio outside the unit, He is still allowed to go out of the room until thursday, and everyone (especially his physical therapist) urged him to take advantage of it.

He also had a visit from his teacher Rush, who brought a video of his class at school and many greetings. Thanks to all the Nueva sixth graders.

Day two of the high dose chemo is over and it went much better than yesterday. Jacob's friend Kyle Bowman came to visit and they played Halo 2 on the XBox smack in the middle of the etoposide infusion. That was the one that was so awful yesterday, so it probably really was the benedryl (we skipped it today.)

He's in the bathtub taking his fourth bath of the day to remove residue of the chemo from his skin. One more day of chemo and he gets to "rest" tuesday and wednesday. The actual stem cell transplant will be thursday.

We're all settled into the room, and Jacob is more than halfway through the first day's chemo. It's been pretty rough, as much because of the benedryl they gave him as a pre-med as from the chemo (we hope.) Benedryl gives him 'restless leg syndrome" which combined with the nausea and other effects makes him writhe around. Add to that the fact that he can't sit up because the chemo agent can lower blood pressure dangerously, he's been pretty miserable.

He's asleep now, though. If only he didn't have to have his blood pressure taken every fifteen minutes...

On the other hand, we have a beautiful and sparklingly clean room, and we're making it our home. We brought in Jacob's favorite pre-packaged food.



and Young installed a mini fridge,



and Jacob enjoyed playing the x-box (with wireless controllers) until the chemo felled him.



Alex just called from our house to ask where the vacuum bags were. Now there is a question I never thought I would hear from him. What a blessing to have the kids around.

We are feeling extremely grateful to be here.

Our nurse practictioner, Lizzie, just called from the hospital. They should have a bed for Jacob tonight around 10:00 pm. That means chemo would start tomorrow morning.

It's been a long day waiting. We are as ready as we'll ever be.

We went in for our admission appointment this afternoon, but Jacob wasn't feeling well, and the docs decided to give him a day to make sure he's not coming down with something. We'll try again tomorrow.

In some ways it was probably for the best - when we got home we discovered the oven was on (at 450°) and we hadn't returned the rented videos.

We'll wait at home to go in to the hospital until we get the call that the bed is ready. Quite a luxury compared with hanging out for hours in the clinic waiting room.

We got a couple calls today that some problems had surfaced on Jacob's preadmission tests. They found some abnormal cells in his spinal fluid, and his adrenal response is on the low end of normal, but neither of these things changes the plan fundamentally.

If I'm reading this protocol correctly, Jacob will get three days of high dose chemo (thiotepa and etoposide) and then have two days "rest". On Day Zero, next tuesday, he'll have the actual transplant; the stem cells that were harvested a few weeks ago will be infused through his central line just like a transfusion. Evidently, the thiotepa is excreted through the skin and is highly toxic to it, so he will have to take at least four baths a day while he's on it.

The week or two right after the transplant will be especially dicey. His immune system will begin shutting down altogether, and he'll be even more vulnerable to infection, so we'll need to be vigilant.

Young and I were talking tonight about how much we appreciate everything people done for us during this odyssey. Thanks to Young's brother Demian and his wife, Lorraine, who've watched our rambunctious dog, Sparky for weeks, to Patty who is taking him this time, to Ruth who's been such a stalwart visitor, Tammy who's making us breakfast tomorrow before we go. To Cindy for the CD's that entertained Jacob endlessly, Tish for the beautiful photos, Rush and the Nueva 6th grade for the great comments, Lang Anh, Susan and Betty and Mish and Eric and Peter and Steve and Mary and Beth and Sabina and Linda, and all the friends and family who call and email. Thank you so much.

It's going to be a long haul. Please stay in touch; you are our connection to the world outside and we want to keep up on your lives. You can post comments here by clicking on the yellow "Comments" link at the bottom of the post (I think you have to sign up, but it's pretty benign), or email us. If you want to visit, call me on my cell 415 307-5159 and I'll let you know what's happening. Jacob can't have any outside food.

Ellie will be here monday and Alex and Letty will be around. Thank god.

I'm running a day or two behind, here, and a lot has been happening.

Friday was Jacob's dad Young's birthday. We had a perfect lunch at Slanted Door, one of our favorite restaurants in San Francisco, and then visited Young's friend and near birthday twin, Mark and his unbearably cute five month old daughter, Addy. Mark had a new video game at which Young actually beat Jacob, so he (Young) was pretty chuffed. We got to say a quick hello and goodbye to Addy's mom, Jen, and wisked Jacob away for one more MRI.



Sunday Young put on a treasure hunt for Jacob and his neighborhood friends that had them traipsing all over the place with maps and gps, and we had a barbeque with them and Alex and our wonderful neighbors and friends, Tammy, Grant, Lee and Jan.



Yesterday was audio-testing after which Jacob got to go see Revenge of the Sith at Pixar with Alex. I'm not revealing nothing, nohow, since they wouldn't tell me.

Today was endocrinology and a lumbar puncture - the very last of the pre-transplant tests. Five minutes after the LP was over Jacob asked, "well, when are you going to do it?" Nurse Mardi kept him entertained the whole time while I took pictures with his cell phone.



Tomorrow is a day off. I'm keeping Jacob home unless he really begs to go to school, so as to avoid any last minute germs. Thursday is the day - he'll be admitted to the hospital to begin the bone marrow transplant. I'll write more tomorrow about what little we know about what to expect.

The 6th grade trip to Washington DC was fantastic. I left the night before on a red eye. Ellie met me in DC, and we had a wonderful Mother's day, shopping, and having tea and lunch.



Meanwhile, Young had gotten Jacob to the airport, and he winged across the country. Ellie and I met and absconded with him at the airport and drove him to the hotel in Wiilliamsburg so the two of them could have some time together.



The next day the tour started in earnest at Colonial Williamsburg, which was about 1/3 history and 2/3 shopping and the kids had a blast. That night the tour bus took us to Zion Baptist Church outside Williamsburg for an "African American Experience" of story telling, dancing and drumming. Jacob and three other kids got to drum.



After that it was non-stop. The next day was Mount Vernon in the morning and DC proper in the afternoon, starting with, for Jacob and me, anyway, the Air and Space museum, and ending after sunset at the Jefferson Memorial. One of the things that impressed me most about DC was the way each monument and building was set off to advantage from each other. Jacob had written his report on the Washington monument, and later we got to go up inside it.



Jacob was completely involved with his friends, and most of the time I just tried to stay out of his way. Luckily, the teachers were more than generous about including me. We had a great Ethiopian dinner together.



We visited the capitol wednesday, sitting in on both the house of representatives (where we heard a number of short speeches running the gamut from stem cell research to defaulting airline pensions) and the senate (where they were debating and voting on a transportation bill).



Security was in ready evidence. There were impassive men with very large guns stationed everywhere. We'd hardly left the capitol when sirens began to blare. A small plane had crossed into protected airspace and didn't respond properly, so they evacuated all of Captol hill. I was really proud of the Nueva kids for how well they handled it, considering at the time we had no idea what was going on. I'm also glad we weren't still inside the capitol when the order was given. Evidently there was all kinds of pandemonium.

It was over soon, anyway, and we were able to keep our appointment with Barbara Boxer on back steps of the Captiol. She was extremely gracious about answering questions,



And then we waited what seemed like hours for some South American Diplomats to leave the building, before we were allowed to depart. It reminded me of that Cake song, "Long Line of Cars."



Wednesday night we went to see the sign language musical, Big River, which was pretty great. The kids were all singing the songs the next day.



Another flurry of monuments thursday morning, and it was time for Jacob and me to leave. Our plane was to leave at 4pm, so we got to the airport at 2:30 like good travelers. It was, however, cancelled and we finally got out on a 9:30 flight. Jacob was somewhat bitter that he could have spent all that extra time with his friends, but six manga books kept him at least partially entertained.

I can't tell you how glad we were to see Young in the San Francisco Baggage claim.

Jacob sprang out of bed at 4:30 this morning. Minutes after waking he was very organized, checking the list of things to bring, flight times, and where to meet his group. He did not seem sleepy, just quietly intent on his trip. We left the house at 5:07, got to SFO at 5:33, and found the meeting spot at 5:37. The meeting time was 6:00, but Jacob wanted to be there early. We found a few members of his group. Jacob wondered if the teachers should not have been there earlier, and then indicated that I could go. I told him I needed to give the medical release forms to his teacher. Lori, Steven and the others arrived, handed out badges, and organized the group. I distributed medical release forms and hand cleaner according to Ann's detailed instructions. Jacob had a rose to give Ann for Mothers Day (Thoughtful Nueva organization strikes again). He did not know what to do with the rose (might be crushed during the plane ride, and had these thorns, he said) so he gave it to me, hugged me and said bye. He has a very direct, slightly vunerable look these days. His eyebrows are disappearing and it makes his direct gaze seem tentative somehow. I know my son is growing up, and increasingly needs independance, this is layered on the reponsiblity of caring for a kid with a brain tumor, and fear of losing him. Jacob goes back to checking his packing, talking to friends. He is relaxed and quietly intent.

With a pulmonary function test (below), pentamadine treatment and urine tests, this medical week is over!



Sunday morning Jacob is off to Washington DC with his 6th grade class. Historic Williamsburg, the Supreme Court, the Capitol, the monuments, the theatre, the bus trips: they are doing the whole thing. I'll be joining them to look after his central line and try to blend into the shrubbery as best I can. I couldn't get a seat on their plane, so I'm flying in on the red eye from the night before and Ellie is meeting me in DC for the day.



This should be fun.

Jacob had his CyberKnife treatment this afternoon. Dr. Gibbs and Dr. Huhn were there monitoring the whole thing, though, of course, it's computer controlled. They shot beams from 105 different angles in less than an hour. The doctors seemed very pleased.

Jacob was a champion, holding still. He doesn't have any restrictions on what he can eat or do. When we came out, it was pouring and he ran all the way to the car.

It will take a while for the effects of the procedure to show up on the MRI, but that should be the end of this tumor.

Here Dr. Huhn and Dr. Gibbs are watching technician Onne strap Jacob in. The rectangles at angles below his head are huge CCDs or sensor arrays of some kind, so they can watch real time images of each shot:

We met with the bone marrow transplant team and signed all the consent forms today (Jacob had to sign as well.) They are planning to admit him May 19th to begin the high dose chemo they call "conditioning." That would put "day zero," the day they actually transfuse his stem cells, on May 27th. He'll be at Packard for at least 30 days and at Ronald McDonald House accross the street for at least another 30.

As part of the preparation for the transplant he had an echo-cardiogram, which was extremely interesting.



And an EKG, and several xrays and more than 40 cc worth blood tests, which were boring:



And Cyber Knife is tomorrow at 2:00 pm.

Jacob had his Cyber Knife set up today. The device itself was very science fiction-esque, but the technician was friendly and efficient , and the whole thing seemed oddly normal.



He formed a foam cushion under the back of Jacob's head, and a light thermoplastic mask over his face. Jacob said it felt much more secure and positive than the one from radiation.



While we there we happened to see a radiograph from one of the clinics celebrity patients:



Afterward, they took a very high accuracy CT that they'll use to plan the treatment. Start to finish the whole thing took less than two hours.



The actual procedure is scheduled for 2:00 pm on Wednesday. The hardest part was trying to get a hold of the Neurosurgeon, Dr. Huhn and make sure he was available to consult. Jacob got tired of listening to me leave phone messages trying to explain the situation to receptionists, and he insisted that we go over to Dr. Huhn's office and get things cleared up in person, which we did. Now there is a life lesson that will be valuable.

Tomorrow we have our bone marrow transplant consult, and he has a ton of pre-transplant tests: EKG, a bizzillion blood test, chest xray, echo cardiogram, sinus films and pentamadine inhalation therapy.

It's really happening.

A fourteen year old girl, Brittany, who's been our neighbor at Packard hospital, is desparately in need of both blood and a bone marrow match. She's very sick with leukemia, and needs frequent tranfusions, but her blood type, B Neg, is very rare.

Please spread the word: Donate for Brittany Marelich at

Stanford Blood Center, Palo Alto
780 Welch Road, Suite #100
650-723-7831 or toll free 1-888-723-7831

Stanford Blood Center

They need other blood types just as much. Our friend Ben has started his high dose chemo and will be needing daily transfusions, as Jacob will when he starts his bone marrow transplant in two or three weeks.

It makes me feel so fortunate that Jacob already got his stem cells banked!

We go in for the Cyber Knife fitting and planning session tomorrow at 7:30 am. Yikes!