WhatsUpWithJacob

Dennis Kuo just called with preliminary results from Jacob's MRI last night: the tumor is smaller ("a lot smaller," I asked, "or just a little smaller?") "A lot smaller," he said.

That's pretty much all he could tell me until Paul Fisher has confered with the radiologist.

The MRI itself was no fun. I think Jacob and I were both worried about what it would show, but were in denial about it. The result was Jacob really suffered holding still and I (again!) lost the key and had to wait two and a half hours for security to come cut the lock off the locker.

Luckily, Young was able to come get Jacob, so it wasn't so bad.

Since Jacob isn't allowed to eat any outside food, he and Ellie have been cooking the things he misses. Today they made truly outstanding eggrolls: succulent and tasty and a complete success in terms of maximizing calories. Unfortunately, I don't really need to maximize calories, but its a small (and delicious) sacrifice.

Jacob ate nearly 600 calories today: the most so far. He's really trying hard, motivated by the prospect of getting off the IV. It's only for 12 hours at night, and the pumps fit in a back pack, so there's no pole to push around, but still, he's tired of it. The reality, though, is he'll still have 10 to 12 hours of IV hydration every night, even after they stop the TPN (total paraenteral nutrition.)

We've been exploring parts of the Stanford campus we never found when we were students here twenty years ago. Today, while E and J cooked, Young and I visited the Arizona Cactus garden where Young took pictures:



and the Stanford Mausoleum, which has some really terrific sphinxes:

Today is day 30 post transplant, and Jacob is making steady (if slow) progress. He's getting out to the park everyday. Today we played an exciting game of croquet with Ellie and Alex, and a few days ago, he and Ellie walked our dog, Sparky, along with cousins Kara and Zena and their dogs. I wonder if Ellie has pictures? Thanks again to Demian and Lorraine who have been watching Sparky for weeks, and to Patty who is taking Sparky for a little vacation next week.

He's also begun eating a little, and they were able to decrease his IV nutrition a bit. The goal is to get him eating enough by the end of the week that we can get him off it altogether.

Thanks to Aunt Susan's manager Theresa who sent Jacob a wonderful surprise gift. He got a new video game, Jade Empire, with it that riveted him for hours. Thank you Theresa! It feels great to know you are out there rooting for Jacob.

Things are definitely looking up. Though he is not yet eating, Jacob is much more active, and hence, happier. He's required to walk outside at least 15 minutes a day. As long as he's in a park away from crowds and construction, he doesn't even have to wear the mask.

Yesterday Nueva friends Charlotte and Alice met us at a Palo Alto park, and they were kind enough to bring water balloons and super soakers.







The other two families staying here in the immune wing at Ronald McDonald House are terrific, so there is some company. Jacob's played cards a couple times with K.J., another 12 year old who was released from Packard the same day Jacob was.



Joining them is a frquent RMcD House vistor whose name I forget. He gave them the noses and encouraged them to wear them to their next doctor appointment.



We shall see.

We are here. Sorry it took me so long to to let you know. It took all our energy for the first day or two to try and fit ourselves into the tiny space of our bedroom. There is a large and well stocked kitchen, and as Jacob is more able to sit up for periods of time we're getting in there more. Not to mention a lovely family room, great laundry facilities, and wonder of wonders, high speed internet.

There's also an absolutely beautiful garden we can;t go out in - construction nearby makes the air dangerous for Jacob and there is a mountain lion on the loose in the area. Makes me feel like Alice looking through the keyhole. The staff is very responsive if we have a problem, but we don'tsee them often, but there are a couple other families here, which is great.

Thursday we said a fond farewell to everyone at the hospital:



Much as I hope we don't have to go back, I'm going to miss the staff terribly. I don't think I have ever met such a smart, funny, caring, creative, wonderful bunch of people. Many more of our favorite nurses weren't on duty for the picture. Lizzie, Sylvia, Juliet, Brandi, Bob, Melissa, Emily, Ami, Lubena, Jill, Sarah, Stephanie, Leslie, Diep, Yenny, Alma, Elisabeth, Ana, Grace, Mary, Rich, and everyone I'm (only momentarily) forgetting we miss you all.

The transition has been hard. Jacob has been pretty sad about how not-our-real-home this is, and how much he is missing out on.

The best thing has been having the big kids with him. Today Alex and Letty are visiting. Here they are Jacob in our Ronald McDonald House Room:



Unfortunately the rules about visitors are extremely strict. Only three people can be in the room with Jacob, so when Alex and Letty are here, only one of the rest of us can stay. I'm sure we'll get used to it but it's a difficult adjustment.

Jacob CAN still have one kid visitor a day. We need to ask parents of potential vistors to go over carefully who the kids have been around in the last 48 to 72 hours and not to come if they've been exposed to any illness at all. We've had it impressed painfully upon us just how vulnerable Jacob is to infection right now.

Thanks again, everyone who's written. Hello to Letty's mom, Marina. Hi to Mishy - Jacob demanded his bite-me socks for his first walk here. As she said when she sent the socks, sometimes you just want to say "bite me" to the world.

And happy birthday to Eric Stone, and to Meredith Blevins and Jeffrey Werner who share thieir birthday with us for our anniversary today (28th, but who's counting.!)

We thought that we would be in Ronald McDonald House by now, but Jacob seems to have some kind of virus. Poor kid, all the awful symptoms are back, and more depressing because he and everyone else expected him to feel better by now. Thank God that Jacob got his own stem cells instead of donor ones. We'd be sure he had graft vs host disease.

Last night was particularly difficult. Around one o'clock in the morning, desparate for something to make Jacob feel better, we gave him phenergan, an anti-nausea drug he hadn't gotten before. Soon I remembered why he hadn't gotten it. Jacob has what's called a distonic reaction to benedryl, and kids who react that way often can't tolerate phenergan. Two and a half hours of writhing, kicking, agitated misery later he finally fell asleep.

At least he got some exercise. I would say it was at least the equivalent of a two and a half hour aerobics class. Under the circumstances he's incredibly strong. And Lizzie assures us he will be able to clear the virus in a few days.

This has served as a wake up call for us to be more vigilant about limiting visitors. Evidently having too many people in the room, including the family, raises the total microbial load in the room air too high. Once we get to RMcD, Jacob will be able to have friends visit in the great outdoors.

Jacob's fundamental recovery continues to go well, even if he feels crummy. He's totally off the pain meds, and doesn't miss them. He's been able to maintain his blood counts without getting either platelets or packed red cells for several days. And despite what we might expect, his electrolytes are fine, something he's had a hard time with in the past.

One of the best reasons for getting off the meds is that he can occassionally get off the IV for a few hours. Here's a picture of nurse Emily hep-locking him yesterday so he could roam free for the first time in 25 days.



And here he is: Jacob Harvill, Unplugged:



And, while I'm on the subject, here are a bunch of other pictures from the last week or two:

The big kids at the hospital:



Young at the hospital:



Ann at the hospital:



Our newly painted room. you can't tell the ceiling is blue violet:



The painters:






So we'll just ride this one out.

Can't put numbers on it, but Jacob's personality has re-emerged. He's been playing boardgames witht the big kids, and generally having consciousness more often than not.



Ellie's been a drill sargent getting him to do his exercises, take walks, use his incentive spirometer to exercise his lungs. It's a good thing it wasn't me.

There are going to be two blood and bone marrow drives for Brittany Hill-Marelich, a patient here at Packard:

Saturday, June 11, 11am to 5pm, the Bloodmobile will be in the parking lot of Salvation Army at 1270 Marshall St, Redwood City.

Sunday, June 19. 10am to 3pm , the Bloodmobile will be in the parking lot of the Redwood Church, 903 Madison Ave, Redwood City.

For more information go to

bloodcenters.org

For information on bone marrow registries go to

marrow.org

Brittany especially needs B negative blood, but the blood center needs all kinds. Jacob (who is A positive) is still getting platelets most days.

They are talking about getting us out of here and into Ronald McDonald House next week, maybe as early as tuesday or wednesday. I can tell it's true because a nurse came today to train us on the home IV pumps and the pharmacy already made up Jacob's outpatient meds.

You want to know the truth? I'm scared. There won't be nurses around to tell us what to do, doctors to answer our questions, no PTs or OTs. I'm afraid it might feel pretty isolated. So we're going to look forward to visits.

On the other hand, the reason we're getting out is that Jacob is doing great. He doesn't necessarily feel great, but all his tests show he's recovering well. He gets irked when we make too much of his "numbers": blood counts, O2 sats etc. but it's hard not to crow over them now, after worrying about them so much before.

Thank you everyone who wrote, called and checked in. I love hearing from you all. A lot! Thank you for your prayers and your candles and for telling us what's going on in your lives.

As of tomorrow it will be two weeks since Jacob's transplant and he's finally beginning to come out of the woods.

There were some scary hours a couple of nights ago when his oxygen saturation began to drop again. Our Nurse, Bob, was great. He calmly added a second oxygen line, "blow by" on top of the canula and managed to keep it in place all night.

Dr. Link gave Jacob an utimatum the next morning: he had to get up and moving, to see if he could get his lungs working, or they were going to have to start a bunch of invasive tests. It was hard, but Jacob managed to walk all the way around the 2nd floor corridor, and take a couple of other walks that day, and the pay off is, he's completely off oxygen and his saturation was 97% tonight.

Tonight, Ellie is spending the night with Jacob at the hospital and Young and I are home together for the first time in it feels like forever.



Sleep tight.

Translated, the critical component of the white cells called neutrophils in Jacob's blood has reached the normal range. Considering that two days ago there weren't even enough of them to count, this is huge progress. We would have been happy with anything over 0.5. The nurses printed me out a copy of the lab results and I've been mooning over them all day.

He's needing much less oxygen, too: 2 liters compared with 12 a couple days ago. They've begun to ween him off a lot of the drugs, lowering his pain medication and dopamine and discontinuing the decadron. Maybe tomorrow they'll stop his antibiotics, vancomycin and ceftazadime as well as the anti-fungal AmBisome. If he could start eating we could think about decreasing the IV nutrition, but as of right now swallowing is still too painful.

I hope by tomorrow all these things will add up to a happier camper. Healing is evidently exhausting work. He's been completely wiped out today.

Thanks for all the emails. I love them!

Jacob's White Blood Cell counts were up significantly today.
All of the Docs said that this was a major turning point for his recovery.

He is in some respiratory distress, and needed oxygen most of today. When he is able to sit up, or increase his level of activity, his Pulse-Oxygen numbers improve quite a bit, and he doesn't have to wear the oxygen mask.

Rajni (his Bone Marrow Transplant Doc) had said yesterday that some of the respiratory distress Jacob was experiencing might be due to white blood cells beginning to repair the damage done to his lungs by the high dose chemotherapy. Dr Link confirmed today that that looked like what was happening.

For a couple times today, for about 10 to 15 minutes at a time, Jacob was quite engaged and active. He played cards with Ellie and Ann, and won handily. This was really great.

He has pain in his chest and stomach, and when he swallows, the pain is sometimes intense and quite literally lays him out. The pain meds are sometimes slow to affect him now. Its really good he is starting to feel better. He took 4 baths today. In watching him move, I can see that it is taking an effort for him to walk and move around. He really concentrates on doing simple things.

He ate a bit of watermelon today, and he was surprised at how rough the texture was. I could tell from the surprised look on his face that the taste and texture were not what he was expecting.

Night before last Jacob's fever stopped, and his temp has been normal ever since. The continuous and icky symptoms abated. But around the same time he began to have respiratory distress, his blood oxygen level dropped and he began having a lot pain in his chest. They had to start him on an oxygen mask (actually a whole series of them, trying to find one that worked) and up his pain meds .

Dr. Agarwal said there were three possible causes - infection, fluid, and engraftment and her bet was on door number three.

Today Jacob's counts started coming back strong. From having a white count of <0.1 a few days ago he went to 0.8 today. He's had four chest xrays in the last 2 days none of which showed any infection, and only moderate fluid, so its looking like the problem actually is a side effect of his white cells engrafting: they're congregating in his lungs to repair the damaged tissue.

His CT scan was negative for new tumors or infections in his head. All the blood and other cultures were negative,
so, the big picture is looking vastly better. Poor Jacob is still in a lot of pain, and it's hard to watch his chest heaving and his nostrils flaring, he's still getting platelets daily, and needing diuretics, but it's getting a lot easier to believe that this too shall pass. Tomorrow is day 10.

Meanwhile, our friends, the Diffenders, have had a difficult set back. Our hearts go out to them.

It's been a tough one: fever up, nausea etc. worse. They're doing a more tests trying to figure out what's going on. In a few minutes we're going for a CT scan. I don't think we're in the "this is normal" zone anymore, but as they keep saying, "every kid is different." And when his blood counts come back up, his body will begin to take care of whatever it is.

The docs and nurses have been incredibly resourceful, not giving up trying to strategize ways to make Jacob more comfortable. An accupressure therapist is coming later (of course he can't have needles right now,) and we're trying aroma therapy.

Thanks to everyone who has emailed and let us know they are reading the blog and thinking about us. It's absolutely the brightest spot in my day to know you are out there. Here's a link I hope will make it easier to email us. I guess the Blogspot Comments thing is hard to navigate.

Send us an email

Here's our poor guy with a wet cloth on his head:

Jacob still has a fever, so they started him on a more powerful antifungal drug, on top of the antibiotics, just in case. All of his cultures have come back negative. If the fever doesn't go away soon, he'll probably have a bunch of CT scans to see if he has an "occult" infection anywhere. His kidneys weren't producing, so he's on dopamine and lasix, and every drop of liquid in and out is carefully measured to track the balance. He;s getting both platelets and packed red cells. For a while this morning his oxygen saturation started to drop and we thought he was going to start getting oxygen, but it picked back up.

Dr. Agarwal came by today and said Jacob would probably commence to begin to feel better by sunday. We are getting by moment to moment, and it was a lift to hear there is an actual time when things will turn around.

Sometimes Jacob gets disoriented, from the drugs and fever. Tonight after another bout of what happens when the lining of one's entire digestive tract is sloughing off, he looked up at me, completely serious, and asked, "Is this show going to be on television?" The night before last he woke up saying "Get this off me!" and tugging on his IV line. Then he explained, "I was touring the factory and I just picked one up to look at it and some how it got attached to me."

But most of the (relatively rare) time he's awake, Jacob knows exactly where he is, and keeps track of what's going on. He said to me this evening, "I'm sorry I got you into all this."