WhatsUpWithJacob

We were discharged from Valley Medical this afternoon, and on the way home, I got a call from the clinic to say, come in tomorrow at 8:30 for labs. If the magic numbers appear, Jacob could start aphaeresis tomorrow afternoon. It's a painless process where they pump his blood out, centerfuge it to collect the stem cells, and return the rest cyclically until they have enough cells. Keep your fingers crossed. It would be great to get this particular mountain climbed.

He finally got his transfusion around 2 am this morning and it made as huge a difference, as we had hoped. His hematocrit went from 22 to 31 and all of a sudden he could walk around on his own two feet! It took a long time to get the blood, which didn't much matter to Jacob, but reminded me that the blood banks really need us healthy people to donate when we can. Jacob's likely to need many more transfusions in the near future.

If you would like to donate a good place is the Stanford Community Blood Center. They have two locations: near Stanford and El Camino Hospitals. Their web site is: http://bloodcenter.stanford.edu/donate/ or call 650-723-7831 or (toll free) 1-888-723-7831. Let them know that you are giving to the community or general fund in honor of Jacob Harvill (not a directed donation).


 

Jacob's feeling a lot better today and his counts are looking better, too. Usually, once the tide changes, the numbers go up rapidly, so I think there' s a good chance they'll let us go tomorrow.

He hasn't had any pain meds at all today. Yesterday, we spent most of the day waiting for it to be time for meds; it's a big improvement.

Oddly enough, he's going to get a transfusion this afternoon, even though his hematocrit's come up to 22. I have high hopes it will give him a big boost, energy-wise. Somehow or other, he's gotten this far without ever having a transfusion, but we've seen roommates at the hospital perk up afterwards.

My phone is working kind of intermittantly here, so if you can't get through, try again.

Jacob got some new pain meds mid day. He slept early afternoon. He is feeling well enough now to be on his computer, wandering around in his game, he had started a new character which is some kind of druid warrior, it looks like a minotaur. Ann said that his level of pain is down quite a bit.

So Jacob is currently at a 4 or 5 for pain out of a possible 10. Most pain meds are not an option because they will cause constipation, which would increase his abdominal pain. Ann is waiting for the doctors to round, and will hopefully be able to get them to address the issue. She is worried that she has already been somewhat challenging to the system at Santa Clara. She asked them why they were not switching lumens (the tubes in Jacob's Hickman Catheter)when administering IV antibiotics, as was the regimen for LPCH and for home care.

Jacob was admitted to Santa Clara Valley Medical Center Monday, 3.28.05 around 6:00 pm. Yesterday morning Jacob was still having abdominal pain, and an elevated temperature. Dr Kuo thought it would be a good idea for Jacob to come into Clinic E at LPCH.

Jacob's temperture was elevated twice (over ~100 degrees), and he is neutropenic (low white blood cell and neutraphil counts), so that meant he needed to be admitted to the hospital. Since there were no beds at LPCH he and Ann got a free (not really) ambulance ride to Santa Clara. We are waiting for a blood culture to come back negative (no infection) to take him home.

He is still having abdominal pain, and is not very happy about it. When he is given pain medication he goes to sleep. Ann summed it up when she told Alex that when Jacob was not in pain, everything was ok with her.

Jacob's been feeling miserable the last few days. His joints hurt, his head aches, and he has horrible belly aches. Yesterday we took him into the day hospital in hope that he was just anemic and a transfusion would perk him up, but fortunately or unfortunately, that wasn't the problem. Most likely it's the drug he's taking to stimulate blood cell production for the stem cell harvest. They doubled the dose this week in preparation.

One of the worst parts is that he can't really take a bath because he has a central line coming out of his chest that can't get wet. And baths are often the only thing that make him feel better.

I'm desperate to come up with a mask or housing that could fit over his chest like a diver's mask so he could bathe.

I have some low temperature thermo plastic I might be able to form over his chest as a model, (though I don't know about forming over the line ) and I've attached a picture of the thing itself on Jacob as well as a schematic of how they work.

And there's a picture of Jacob's chest with the hickman catheter at:

Hickman

There is a good description of central lines at the Teens Living with Cancer

Central Lines

The nurses were able to move Jacob's chemo up a few hours each day, until today's fell at noon, and then let us go after only 6 hours of post hydration, with Jacob's promise to drink 6 oz. every hour. So, here we are home in Half Moon Bay Wednesday evening. Who'da thunk it?

Jacob's conked out already, so I'll have to wake him every so often to drink. Knock on wood, he did really well with the chemo. He went into it so much healthier than he has the last couple times, I'm hoping we can make through the next couple weeks without any extra hospitalisations.

This next week we'll be giving him higher doses of G-CSF (colony stimulating factor drug to encourage the production of blood cells) to prepare for stem cell collection. Starting monday he'll have daily labs to see how the counts are going. when he hits the golden numbers we'll go into the day hospital for the aphaeresis (cell collection process.) With luck that will be the end of next week or the beginning of the next.

Young got home today too, and was astonishingly cheerful after more than 24 in transit. I can't wait to see his pictures.

I'll tell you, I'm looking forward to sleeping in my own bed.

Jacob's doing quite well with the chemo (though I probably shouldn't say it). Steroids are our friend; at least decadron is. He sent me out tonight for chinese take-out, and ate it with gusto.



Alex and Letty came yesterday and hauled Jacob all the way down the long corridor to the Stanford hospital cafeteria in a red wagon.

We're here until thursday.

We got in to the hospital today. With everything already packed and the lab work done, the whole thing was a breeze. We waited until we got a call that the room was actually available before getting in the car.

While we were waiting to go, our friends Leanne and Moya brought their wonderful daughter, Lucy, to visit. We were charmed!



Jacob's in great shape starting this chemo after the extra four days off.

Young is safely in Tel Aviv, though a little unstuck in time.

And we finally got to see Alex and Letty's new apartment last week.

There was no bed for Jacob at the hospital today, which was a bit of a let down.

Jacob and I had spent the morning packing and planning, since Young left this morning and we knew he wouldn't be around to bring us whatever we forgot. We loaded the car, returned rented videos, went to the library for books on tape, rented more videos, bought fruit.

But we just got a call that there will be a bed tomorrow, so we're leaving it all in the car.

So it goes.

We're heading back to the hospital for another round of chemo tomorrow. Jacob is in great shape this time. The four days the chemo was pushed back while he was on antibiotics was like a gift. He went to school, hung out with friends, and generally got to be normal (if you don't count the trice daily IV's given by somewhat anxious parents, and he seemed ready to discount them.)

Young is leaving for a business trip to Israel about the same time we check into the hospital, so we'll be on our own. Call or come visit if you can - I could certainly use the company.

My cell is 415 307-5159. We usually use the room phone line for the internet.

Happy Saint Patrick's day,

The MRI results are in. Jacob's tumor has shunk down to 13% of its former size.

Current size: 1.4 x 1.9 x 1.1 cm = 2.9 cm3
Former size: 3.1 x 3.3 x 2.2 cm = 22.5 cm3

Yes!

He's doing great in general.

We had a tremendously positive and helpful meeting with the teachers at Nueva, and he's getting back into the swing of things. Chemo's been put off til a week from today (after he finishes antibiotics,) so he should get a good week of school, at least half each day.

PS for those mathematically inclined - yes I realize that the tumor is unlikely to be a rectangular solid, and that a closer approximation would have been an inscribed ovoid, but the proportion is the same.

We hung around all day yesterday and most of today waiting for the pathologist to name the bacteria that had grown out in Jacob's blood culture. Our oncologist suggested calling it Sam, but he was voted down.

They never did discover Sam's true identity, but they did find an antibiotic he is sensitive to, so, after much delay, we got to come home tonight. A nurse came out to the house and taught me how to give him the IV antibiotics. It's much simpler than I imagined.

Almost lost in the whirlwind of escape were two appointments today: audiology and MRI. We won't get the results of the MRI for a few days (I will definitly post when we do), but the audiology showed that Jacob's hearing is undamaged by the chemo. That's a great thing because cisplatin can sometimes cause severe enough hearing loss to curtail it's use.

There were beautiful calla lillies on my front porch when we got home.

Well, Jacob's blood culture turned up positive for something gram-negative. You'd think the positive and negative would cancel out, but no. So he has to stay in the hospital another day or two.

Thank goodness Ellie, Jacob F, Alex and Letty were here. It's actually been pretty fun hanging out and playing games and talking.



Tonight, Young and brought us dinner and served it on our own dishes: a family dinner just like home, and Jacob still feels pretty good.

Jacob ran a fever for awhile on friday, and since his blood counts are low, he's back in the hospital on antibiotics til tomorrow evening. It's just a precaution; he feels fine.

Ellie and Jacob Fenton, Alex and Letty all came and played a marathon game of monopoly with him today. Young and I got out for lunch.

Jacob's sister, Ellie, and her boyfriend, Jacob Fenton, are coming in at midnight tonight from Philadelphia. I'm supposed to wake him to go to the airport. He's really excited.

He's been to school more than half of each of the last two days, including PE on Wednesday (I thought he was going to sit out...who was I kidding?) He gets tired, but he's so Jacob, he's very gratifying to hang out with.

He's handling the realities of the situation, like having a central line (catheter in his chest,) with patience and humor.
The two things that seem to bother him most about the upcoming stem cell transplant are 1) missing so much school and 2) not being able to go to restaurants, so he's decided he's going learn to cook.

We had a good meeting with the bone marrow transplant team. At my request Jacob video taped it for Young, who couldn't be there. Everything is subject to constant reevaluation and revision, but here is an outline of the plan as we know it:

o Five-day-long chemo session starting March 15

o Stem cell collection (aphaeresis) week of March 28 - This might take more than one day, depending on how many cells they get.

o Week long chemo session starting April 5

o MRI week of April 11

o If MRI is clear, bone marrow transplant to begin around April 18

o Else, two more chemo sessions and BMT to begin around June 30.

o If he has to have the extra two chemos, he may be able to go on the DC trip.

o Before the BMT when they actually give him back his stem cells, he will get a week of very high dose chemotherapy that will anilate any remaining tumor cells (and his entire immune system with it.)

o Either way, once the BMT starts, he's in the hospital for at least the first 30 or so days and then at Ronald MacDonald house for another 30 or more. Some of that time he will be heavily sedated, but only for a week or two.

o He CAN have visitors during isolation, as long as they are thoroughly healthy, wash their hands etc.

o After Jacob returns home, he will still be restricted from going to school or any other public place until his immune system is back in operation. This can be anywhere from a few weeks to many months, though Jacob has a good chance of being on the shorter span because he's getting his own cells, not a donor's.

Okay, time to go to the airport....