WhatsUpWithJacob

We went in yesterday morning for Jacob's lumbar puncture not expecting much.

First thing, we got to meet with Karen Kristovich, BMT nurse practitioner, and she said... Jacob can now go into (uncrowded) stores to pick out his own video. He can eat restaurant food that's fully and freshly cooked (like pizza) and eaten outside. He can go into a friend's house, on a limited basis (the household has to have had no sick denizens or visitors for 48 hours, do the handwashing routine etc.)

The best part, at least as far as I was concerned, is that even the tests he flunked this time are getting very close. The keys are the CD4 lymphocyte numbers, and the immune function tests where they actually stimulate samples of his lymphocytes with pathogens and see if they can mount a proper response. Taken together these have been shown to correlate closely to actual resistance to real world germs.

So they redrew the labs yesterday, and there's a chance, if the next set comes back enough better, that Jacob could be back in school by his birthday October 23. He pointed out that last year he finished radiation therapy the day before his birthday, so it would be great if we could repeat something like that.

Needless to say we were thrilled. Maybe it was the euphoria and endorphins from that news, or the 4 mg of ativan, but the lumbar puncture itself went fabulously, and unlike the last time, he's had no pain since.

And last night we had a four star veggie pizza dinner al fresco at North Beach Pizza in San Mateo, Jacob's favorite.

Well here it is. I'm quoting directly from the BMT team's emails for accuracy.

1. IgG is a bit low but >500 so no IVIG is needed and the test should be repeated to make sure the level is not dropping much.

2. T&B lymphocytes are back and they are pretty good but the CD4 is lower then we'd like. I'd like to repeat the subsets at his next visit.

3. lymph function: this has been what we're all waiting for. 1/2 of it is back monday and all 3 of the stimulations on that test are "decreased response", that means 0/3 on that half. The other 1/2 is still pending. Jacob would have to pass all 3 to pass the function test. Not very likely but not impossible.

Even if he passes the function part we still need to repeat the T&B subsets and see if the CD4 is higher. It looks like he won't have his isolation lifted this go round but hopefully will by the 2nd round of tests.

He is allowed to go to a park in the free air ouside where there is no construction and loose dirt or sand. It is not recommended that he go to a mall or any other crowded place where lots of people are rubbing shoulders. Only 50% of our patients will actually meet the criteria at the first testing. So I am not surprised at the results.

Ann speaking again: So, Jacob goes in for a lumbar puncture tomorrow (it's an already-scheduled tumor follow up - not related to the immune studies) and they'll draw labs for a new set of immune studies, and in two or three more weeks we'll see what they say.

Meanwhile, we've got some good new: Eric is fine; Richard and Maria made it out of Huston before Rita and back after and their house was okay.

I've been cranky and upset about the test results, but the truth is we are unbelievably lucky.

We never heard back from the clinic yesterday, so it will be at least monday before we get the results of the immune tests. Most of the results have been back for a couple weeks now, but evidently they can't be interpreted until the lymphocyte function part of the test is complete.

I'm getting concerned that the lab has lost the test altogether.

I'm worried about Nicholas's reaction to the new chemo regime he's started.

I haven't heard yet how our friend Eric's surgery went yesterday or whether our friends Richard and Maria have been evacuated from Huston.

Ah well. It's a beautiful day here on the coast. I got up this morning to find Tammy and Jan arranging huge, gorgeous, sunflowers on our porch. Jacob is A-Okay.

...and sometimes no news is good news.

We haven't gotten the results of the immune studies yet. It should be any day. In fact it should have been a few days ago. I'll let you know as soon as we find out.

Meanwhile, Jacob's advisor and science teacher, Ken, and his dog Loki, came and did a lab with Jacob. It was great to see them so intent on whatever it was that they were doing.



Tammy's photography lessons are going really well, too. I hope to get Jacob's permission to use some of his images.



I'm not telling what that thing is. Young will explain it later.

Last weekend Alex's old friend Matt came up to visit. It was a kick to see him and Alex playing video games again the way they did when they were Jacob's age. And Jacob and his friend Wes were right there with them.



Please keep praying for Nicholas, whose leukemia has returned. Here is an excerpt from his blog, so you can know what kind of kid this is:

"And this evening when walking by another patient's room, Nicholas heard the little boy crying and pulled mom aside. Nicholas whispered, "Mom, can I let Dillon use one of my Teddy-Bears to help him not cry. Because he is crying in there." Nicholas then got a Teddy-Bear and knowing that he shouldn't go into Dillon's room stood by the door. The doctor then approached Nicholas and Nicholas said, "Here Dillon, you can have this" and the doctor delivered it to Dillon. And Dillon stopped crying."

I'm sure the quote is word for word. That is exactly how he talks.

Letty taped the orange wall and we painted the stripes of my dreams.



It took six tries to find the right green.



This doesn't have anything to do with Jacob - In fact he is totally uninterested in the whole thing - but I told several people I would post the pictures.

Jacob's started instant messaging with his friends; its a great way for them to keep in touch. The walls are closing in a little as we wait to hear what, if any, new freedoms he'll get when the immune tests come back.

Jacob had his immune reconstitution studies drawn last week. These are the blood tests that tell us how far his immune system has recovered from the bone marrow transplant. While we don't really expect them to show that he's ready to go back to school yet, we are hoping that he'll be allowed a few more freedoms. I waited until today to post, hoping we'd learn the results at his appointment this morning, and I'd have news to tell, but two key studies won't be back for another week. So for now, everything stays the same.

The good news is that his tumor markers are down yet again, and, though his immune globulin is still low, he doesn't need the IVIG he reacted to so badly last time. And I'm overwhelmingly, poignantly, aware how lucky we are: how wonderful it is for things to stay the same.

Our hearts are with our little friend Nicholas from RMcD House and his family. Nicholas' mom has asked for our prayers for this remarkable five year old boy, full of love and humor.

It was a silly weekend.





But very nice.

Today is the one hundreth day since Jacob received his stem cells back. We had a little party to celebrate.

We met with Paul Fisher today to get the results of tuesday's MRI and they were very hopeful. Though the mass is still there, its "enhancing" has diminished some, meaning it's taking up less blood: an excellent thing. The cyberknife radiation Jacob had in May can continue to work it's magic for up to 12 months, so there's good reason to hope that the thing will keep going away.

Dr. Fisher said that as of now Jacob has had the Cadillac, the "nuclear bomb" (yes, he actually said that), of the treatments available. For now, we just watch and wait. When we talked it over later Young added, "We take this time as a gift."

Recovery from the Stem Cell transplant is a whole separate matter from recovery from the tumor. Jacob's going to have his immune reconstitution test next tuesday. These are the ones that will tell us how far along his immune system has come in it's ability to mount a response to a pathogen. The tests take a week to ten days, so we won't even get a snap shot of how much longer he'll be in isolation/out of school for a couple weeks. Meanwhile, the BMT team definitely nixed the idea of Jacob attending some part of the seventh grade camping trip. It's just too dangerous.

Our neighbor Tammy is a professional photographer and she's offered to give Jacob photography lessons. She has a clearer eye about the school issues than I do. I've been more or less in denial about keeping him home, since even the term "home schooling" gives me the galloping heebee jeebees.

His favorite tutor and Ellie's old roommate, Sabina Piersol, will be tutoring him two days a week as well, to help him keep up with the Nueva curriculum. With Tammy's gentle push, we're beginning to think about other possibilities, like finding a naturalist who could lead explorations around Quarry Park.