WhatsUpWithJacob

Young's friend, Richard Crockett, alarmed at Jacob's hazardous weaponry, sent us new, more palatable blowguns of his own design. Sleek and fearsome in appearance, they shoot miniture marshmellows...hard!



The brothers Harvill engaged in ferocious battle, leaving the house a scene of scattered marshmallows, at least until Sparky the dog got inside. Thanks, Rich!

We saw the Cyber Knife specialists, Dr. Iris Gibbs, and her resident, Dr. Brett Cox, at the Stanford Cancer Center today to go over the plan for the procedure. It seems remarkably straight forward:

� A day of preparation where they fit Jacob with a plastic head restraining device like the one he had last fall for cranial/spinal radiation, and take a bunch of CTs

� A day of planning by the doctors and radiation physicists to determine all the angles and dosages to shoot from.

� One or at the most two days of treatment, each of which will last only about as long as an MRI: probably under one hour. This will happen next week.

Compared to last fall when Jacob had radiation five days a week for six solid weeks, it sounds like a piece of cake. And the side effects of the Cyber knife are nothing compared to the radiation he's already had, even though the dose is so high, because it's so tightly focused.

We had a brief moment when we imagined a typo on the MRI report measuring the tumor in milimeters instead of centimeters might be legit, but it wasn't. Still, Dr. Gibbs kept refering to it as "very small" which was gratifying. The cyber knife techique can only be used on small tumors, which answers the question, "why didn't we do this in the first place?" Also, it's most effective as a "sandwich treatment": radiation sandwiched between two types of chemo.

The Cyber Knife device itself sounds amazing. For one thing, it continuously tracks Jacob's head and automatically adjusts to any slight movement. It's accurate to the sub millimeter level. Its beam source is a linear accelerator, and it swivels around on a robot arm that can maintain that same kind of tracking accuracy.

If all goes as planned, Jacob should be admitted for the transplant "pre-conditioning" (high dose chemo) either May 16 or 23.

And speaking of May 23 - that's when ELLIE IS COMING HOME. She'll be here at least through June.

So we got the results of the MRI and the proposed new plan of treatment from Dr Kuo (from Dr Fisher and the Tumor Board). The key points are:

1. Jacob's tumor is slightly smaller, and has probably responded as much as it will to the chemotherapy regime, so chemo will stop. He has has a total of 4 rounds.

2. The recomended treatment for the remaining tumor is cyberknife. This is stereotactic radiotherapy focused directly on the tumor.

Cyberknife

3. Jacob will have to rest then, and can do that by going on his class trip to Washington DC, if he wishes.

4. When he gets back, he'll have another MRI, and a lumbar puncture (spinal tap) to see if there are any tumor markers (beta-HCG and AFP) in his cerebral spinal fluid.

5. If he is all set, he can start Bone Marrow Transplant.

We had a lovely seder with Susan and her family, our friends John and Ruth and Letty. Alex was back east and got to see Ellie.

During the retelling of the Passover story, Susan and I were reminded of Shifra, one of the midwives who defied Pharaoh. Our cousin Mark is marrying a beautiful woman named Shifra and we send them both our love.

The tumor is smaller. That's all we know so far, not how much smaller, or what it means in terms of treatment decisions.

Jacob's holding up great. His ANC (immune cell count) is way low, so we're on the watch for fevers and avoiding infections, but he's fine.

The deed is done. Jacob has his head and spine MRI today, and he was steller: he held still through the whole thing (and those of you who know Jacob know that holding still is not a particularly Jacob thing.)

The payoff was, because he held still, they only had to retake two exposures and the whole thing was over in an hour. There was one time he was so sqirmy it took an hour and forty five minutes and only ended then because they had another patient waiting. Of course, there was also the time I lost the locker key while he was in the MRI and we had to wait for maintenance to come and cut off the lock.

I couldn't take the camera into the room with the magnet but I got a "before" shot:



I'll let you know...

The big MRI is tomorrow, and I'm scared to death, which doesn't really make sense since we probably won't hear anything until after the tumor board (!) meets on monday to discuss the results.

I don't know if the doctors realize the extent to which we deconstruct everything they say looking for a clue about how things are going. There's been a lot of talk about what they are going to do during the next chemo, which I take to mean that they don't expect the tumor to be gone yet. From the beginning the plan has been 4 to 6 chemo session depending on the outcome of this MRI, but I can't help wondering if having to go the extra two is a bad sign.

Sorry - I usually try to keep my own inner dialog off this page, (and obviously, for good reason.) Last saturday was the 1 year anniversary of Jacob's diagnosis, and I've been more introspective than usual.

Jacob's doing just fine.

And, because I promised Mishy, here are some pictures I drew in the hospital during the last chemo:

Jacob is home and feeling pretty frisky under the circumstances. He and Young went off to the sporting goods store to look for some kind of chest protector to pad his central line so he can play with the kids in the neighborhood.

Thanks to everyone who made this time in the hospital so much easier on me than last time: Joni and Mary who brought lunch and Nueva stories, Tammy who left a quiche in our refrigerator for when we got back, my sister Susan who brought bagels for the nurses (and us), Letty and Alex who stayed with Jacob while Young and I went out to dinner and everyone who called.

I bought this blowgun for Jacob online, expecting something with rubber or at least wooden darts. In fact I bought two so that he and a friend could have fights with them.



Low and behold the darts are needle-like steel.



The nurses put a sign on the door in the interest of self preservation:



Jacob loves it.



Chemos going according to schedule - we should be out mid-day saturday.

Everything went smooth as silk on monday. We stayed home until the nurses called to say we'd got a room and it turned out to be a private one right by the nurses station (though if a bone marrow transplant kid comes in, we'll be moved...) There's a lovely view of flowers out the window and I get cell phone reception!

Jacob's already had the 24 hour paclitaxel and the first dose of cisplatin; just four days of that to go. I can tell it's getting to him some because he's phenomenally grouchy - in direct contrast to his general mood the last week or so of sunny good humor. Even so he's eating fine (yes, decadron.)

Next time, if there is a next time, we may be able to do it outpatient: just go to the day hospital for the chemo infusion itself, and then do the rest of the meds and hydration at home. Evidently they can fit him with a IV pump in a back pack. The only problem with that picture is the long and winding road between home and here.

I'm really appreciating being back at Packard, with all the wonderful people taking car of us. Here are a few of them
Dr. Dennis Kuo



Nurses, Merian, Wanda and Mardi and Melissa







More soon.

I see it's been more than a week since last I posted. Happily, that's because everything's been fine; the only important thing that happened was Alex's birthday. Jacob's brother is now officially 24 (though I have been rounding up for a few months.)



Jacob's enjoyed going to school some and seeing his friends around the neighborhood.

He's going back into the hospital tomorrow for chemo number 4 (assuming there is a bed for him.) This is a six to seven day one, depending how the timing works out, so we'll be there though saturday at least.

This drug combo (cisplatin and paclitaxel) was easier last time than the alternating one (cisplatin, bleomycin and vinblastine). We have fingers crossed that it will be again.

The next MRI will be April 20th (everything got moved back a bit.) Then we'll see what comes next.

Jacob was happy to kick back at home and play video games with his friend from Oregon, McKeever.



We're getting some great input on the hickman water-proofing project. My cousin, Alan Broder, an expert on underwater photographic equipment had a number suggestions, including the judicious application of duct tape. Substituting micropore or silk surgical tape there might be something there.

Our friend, machinist Mike Colyar in Olympia, is working on mask like ideas, and Jim Henning, an MD and dad of one of Jacob's class mates, suggested a large Op-site surgical dressing. We're progressing.

Love to everyone.

They needed to collect between 3 and 5 (million??? I'm not certain what the numbers mean) stem cells today, and they actually got 5.6! We got the call this evening: Jacob doesn't need to go back tomorrow. It's in the bag.



Jacob was beyond being a trooper. When the flow was too slow using just his central line, he stuck out his arm and got an IV as well. During the process he ate lunch and watched the extended version of the Return of the King which dovetailed nicely with the procedure - they both lasted upwards of 4 hours.



The machine was a trip - kind of a cross between Mr. Peabody's WayBack machine and an especially persnickedy old reel to reel tape recorder. And it's name is "Thirsty." I'm glad we got that one. The other one is named something awful like "Dr. Draino."



I can't tell you how relieved I am to have this over with.

While we may. Jacob is at Lucille Parkard for his aphaeresis. Aphaeresis is a process of collecting Stem Cells from his blood. Dr Kuo advised that the procedure would take the time of two romanitic comedies or one epic. Jacob and Ann took the Lord of the Rings Trilogy with them, so they are set.