WhatsUpWithJacob

I called this picture eyebrow development, but Young points out that its lashes too.



I can't explain the eye-color. He's growing hair too.

Jacob is having a full head and spine MRI tomorrow - NOT his favorite activity! But Young is going to be with him, so at least we don't have to worry about me losing the key to the locker.

Normally we'd expect to hear results after the tumor board meets the following monday, but monday's labor day, so it may be delayed. Funny, the tumor board fell on the Fourth of July last time.

The waiting part is hard, but I have a lot hope that we'll learn good things, even if I can't altogether turn off the other scenarios. We'll let you know how it comes out as soon as we can.

Sunday, we got the sad news that our friend from LPCH, Ben, had died at the age of seven years. This is an excerpt from his blog. I'm sure his family won't mind my quoting it.

"At 9:30 tonight, Ben drew his last breath. After more than 8 months, the battle is over. Seconds after his heart stopped, the sound of fireworks came from down the street--an odd sign from above anouncing his arrival in paradise."

Ben and his parents gave us so much companionship and encouragment over these many months of treatment. They taught us so much by their invention and saavy as they pursued a cure. Our love and thoughts are with them.

We had a wonderful weekend with Alex and Letty, playing games and doing projects. Jacob went mountain biking in the hills by our house: caught air, took spills and got back up again. I felt a twinge of survivor's guilt as I hugged the kids and felt our good fortune all the way to my bones.

Ellie left for Philadelphia on monday.



She's already deep into planning for the course she's TAing in the fall.



It was great to have all three of the kids here together for the summer.



Jacob's AFP (tumor marker) was 1.54 ng/mL yesterday - the lowest since he was first diagnosed over a year ago!

Ellie's leaving on monday, and though we aren't supposed to have more than a handful of people around Jacob at a time, we had to have the local Harvill clan at least once.

Jacob baked a rather fabulous devils food cake, and everyone was gracious about staying outside, even though it was actually a little cold. and it was sooo worth it. We really missed Matthew, though, and have to track him down.

Here are some of the cousins:



and Jacob's Uncle Demian



and the bbq boys:

We're just hanging on the comfy couch,



Playing a lot of Settlers of Cataan,



It's good.

The diagnosis of Jacob's IVIG reaction was anaphylactoid not anaphylactic. According to the Merck Manual online

"Anaphylactoid reactions resemble anaphylactic reactions. However, anaphylactoid reactions may occur after the first exposure to a substance—for example, after the first injection of certain drugs, such as polymyxin, pentamidine, opioids, or the radiopaque dyes sometimes used with x-ray procedures. Anaphylactoid reactions are not allergic reactions because IgE, the class of antibodies involved in allergic reactions, does not cause them. Rather, the reaction is caused by the substance itself."

Maybe I'm just as glad I didn't know before. No wonder they make us go into an isolation room for pentamadine.

# posted by Ann @ 2:35 PM 0 comments

Jacob was released at 6:00 pm, and he flew out the door at 6:01. He was ready to go.

Nothing ever grew out in his blood cultures, and the discharge orders just say "anaphylaxis." It was really scary, but over with fast: a much preferable diagnosis to the alternative, septic shock, which would have meant many more days in the hospital on antibiotics.

Now we just hope he never needs IVIG again.

Being back on 2 North brought into focus just how far Jacob's come in the 7 weeks since he was released after the BMT. He's strong, he's eating and drinking and he has eyebrows!

It's good to be home.

Well Jacob went into the day hospital yesterday for a routine infusion of immune globulin, but it got complicated.

About three quarters of the way through he said he felt like his throat was closing up a bit, and I went to get our nurse who had the reaction meds ready. Everything seemed under control, so I went to have a quick medical appointment of my own, leaving Jacob with Ellie. By the time I got back 45 minutes later, he was in some kind of shock - no one could quite tell if it was anaphalactic (allergic) or toxic (bacterial) - but his blood pressure had plummeted and they were running fluids into both lumins full speed with not much effect on his BP, though oddly enough, he was still perfectly conscious and rational.

His symptoms continued to be wierd and erratic - even as his BP dropped, his heart rate stayed normal, which was contradictory. Rashes appeared and disappeared across his body like something out of Star Trek. His O2 sats dropped into the 70's and then came back up.

Thank God for Ellie, who kept her cool. Thank God for our Day hospital nurse Melissa and Doctor Chris Dvorak, who stayed with us every step of the way. They got him stablized, and we spent the night in the PICU (me sitting up in a chair) til early this morning when we moved to our old stomping grounds on 2North. Also, thank God for Young, who came in at 4 am so I could go crash on a couch.

Anyway, Jacob is fine. They started him on IV antibiotics, and we'll hang here 48 hours to make sure no bacteria grow out. Since he's post BMT, we got a nice single room. Jacob was pretty seriously bummed about being back in the hospital, but his sense of humor seems to be rallying well. As soon as I finished hogging the phone line, he'll be back online with his friends.

I cracked Young up the other day, hollering, "Don't drink that water; it hasn't been washed!" It kind of amuses me too, washing the groceries before putting them away.

Meanwhile, I need some help figuring out what we can give the nurses at the hospital to thank them. I thought of a camera, either digital or maybe poloroid to use on the unit, but Young thought there might be confidentiality issues. Our friend Linda offered great ideas for individuals, but I'd really like to get them something as a group. Ideas are welcome.

Jacob's AFP (tumor marker) test came back lower than the last already normal number. Life is good.

Jacob got some good news today. He gets to stop IV hydration for a week, to see if his kidneys can handle it. Getting off the pump has been a big goal.

Unfortunately, we found out at the same time that his IGG (immuno-gamma globulin) was low, and he'll need to go into the day hospital for a few hours infusion of IVIG (intravenous immunoglobulin). This isn't a big deal, but it's another reminder that even though Jacob looks as healthy as can be, his immune system is still pretty wacked down. Watching him run around, we tend to get complacent.

I told Karen, Jacob's Nurse Practitioner, that I'd hoped to move up the date of the big day 100 set of immune response tests that determine when he can get out of isolation, but she said in light of this test it ain't gonna happen.

Oh well. We've got bigger fish to fry, enjoying the wonders of summer in Half Moon Bay (really, El Grenada.)

It is SO good to be home.