WhatsUpWithJacob

All the kids are here and the weather is beautiful. We all took Sparky to the beach.





Jacob is in his element, and so relieved to have his own space, that he's taking charge of his own care, heprin flushing his own central line etc.

More babies! Welcome to the world Sienna Isabel Lynch and Sarah Marie Hansen born just three days apart!

And I have a new cell. same number.

Wll I lost my cell phone again, and this time its going to take a while to replace. If you've been trying to contact us on it , my deepest apologies (and I know: I need to change the home phone message which tells you to use that very lost phone!)

Anyway, we're home and the good old home phone is working fine. Feel free to call - you won't interrupt much except trying to find places to put away the amazingly huge amount of stuff we accumulated in just 9 weeks away.

My friend Deb recommended the George Carlin routine on Stuff. I have to find it.

This is going to be quick, because otherwise it's never getting out. We are home in Half Moon Bay and LOVING it.

It was sad to say goodbye to our compadres at Ronald McDonald House, but they are in our hearts forever.

Here is the marvelous Nicholas. I wish I'd got a picture of his parents as well.



And here are Jacob and KJ playing, guess what?



And finally, Jacob transformed by Sheila's gift wig-hat-anemone-thing:

We just discovered that not only is there a drive in movie theater in the area, but it shows first run movies! Boy, are we excited! This came closely on the heels of the news that Jacob's earliest possible date for regular movie theaters, even off hours, is post day 100, so it was a great relief.

Everything is still on track for our move home on Monday. I've spent the last two days cleaning and will do more prep over the weekend.

The diet and isolation rules won't change once we get home, except that since we live in a pretty rural area with no construction nearby, Jacob will be able to walk right out the front door without a mask.

Visitors will be very welcome with the same caveats: completely healthy, haven't been keeping company with anyone who's ill, etc. I can't tell you how great it's been to have all the visits over the summer. Big thanks To Alec. B who brought some intriguing books, and Alison C. who gave Jacob a peek at some toys in development.

Ellie's back in town and are we ever glad to have her. She staying until August 15. Tonight she and Jacob made us a tasty Mexican dinner.



Jacob is doing fabulously. By next monday (day +60 post BMT) he should be off most medications and ready to go home.

Doctors and researchers across the country have been tremendously generous with their time as we continue to do our homework. Thanks to everyone who helped us make contacts and pointed us in new directions. This is going to be a long term, on-going, project, but Jacob's doing so well that for now we've determined we can just watch tumor markers (which were already in the normal range and continue to go down.)

We've now got all of Jacob's MRI's on CD and tomorrow I pick up the more than 500 pages of medical records I ordered.

Thanks again for the calls and emails. I can't tell you how much we appreciate them.

So here is where we are, as far as I can tell.

There is no indication of active disease.
Serum tumor markers are in the normal range and trending lower.
Jacob is eating very well.
We probably get to go home in a week.

Dr Fisher said we will monitor Jacob closely. Ann and I are still looking into another course of treatment, should it be needed. Ann has done a great job of pulling together Jacob's case history.

Jacob, Ann and I are very (add large multiplier here) thankful for your prayers, thoughts, insights, visits, and amusing objects sent by mail. The adhesive patch of the monkey setting off fireworks is a favorite of Jacob's.

We finally seem to have found something that works to keep Jacob's hickman dry during baths, and it is (I'm not kidding) Press 'n Seal food wrap. I can hardly believe it, but it sticks well enough not only to keep the dressing dry, but to support the weight of the tubing. Who knew?

No new news from the docs on the bigger oncology questions, but we've had a great couple days. Jacob had visit (and water fight) with Kyle and Ryan B. at the park (was it yesterday, or the day before?)

Today, neighbors Tammy and Grant brought Wes and Marius out and a good, wet, time was had by all. They were on the way to Great America and Wes and Mar were pleading to stay and play with Jacob - pretty terrific friends, I have to say!

And to top it off Kyle TL is here now, just in time to play a new, much anticipated, game Alex Louie sent.

At today's clinic appointment, Grace and Karen decided to discontinue Jacob's IV nutrition. He'll still have IV hydration during the night, but less volume, and only minimal additives. They are expecting him to eat and drink enough! Today is day 49 - 7 weeks since the bone marrow transplant. There is a good chance we'll get to go home on day 60, a week from monday.

It's been an uneventful few days. The tumor board met yesterday, so we're hoping to hear something soon, but in the meantime we're spending a lot of time at the park.

As Wendy Raddon said, "babies are so healing!" We're taking the cure.

Joni and Adam Cropper brought their 9-week-old puppies to the park so we could snuzzle them.


Mary Hynes and Kyle TL came too.


Guess what Kyle, Adam and Jacob did? Thanks, by the way, to Mel Bebbington who came up with the idea of water fights in the first place. It's definitely the summer's favorite activity.


Completing the treatment, Mark Yahiro sent this wonderful picture of Addy:


And Wendy Raddon sent several great ones of Ben and Emma:


These guys are still my babies:

Things seem calmer today as the record collecting is underway, a case summary is written to share with anyone we ask for an opinion, and Young has found a few different studies Jacob might qualify for.

Meanwhile, Jacob had an upbeat clinic visit yesterday with Nurse Practitioner Karen and learned he can now have fresh fruit. He had been fearing he would miss the cherry and peach season altogether. We went straight to Sigonas produce market and bought a them as well as plums, nectarines, tomatoes and lettuce. Here he is with karen:



Dietician Grace was so pleased with him for eating an average of 502 calories a day that she may dc his TPN on monday. Unfortunately, he hasn't done so well keeping things down today. Maybe tomorrow will be better.

If you've tried to call us, you might have noticed that our cell phones aren't working too well here. You can call us on our Ronald McDonald House phone: (650) 470-6071, though we can't call outside the local area.

We're gearing up to seriously investigate fall-back treatment plans for Jacob. Though the doctors are telling us that "no certainty whatsoever that [the mass on the MRI] represent[s] cancer" they aren't telling us that it doesn't, either, and we're afraid we will miss a window of opportunity if we just wait until the next scheduled MRI three months from now.

Basically, what gearing up means for me is clerical: amassing a full set of medical records for Jacob so that we can get some second opinions. Young's role is to research treatment options.

This is scary. I've kept my sanity by trusting that if we did everything the doctors said to do, Jacob would be all right. Just questioning that assumption is very hard for me. I don't think Young was ever able to suspend disbelief so entirely.

Paul Fisher, Jacob's neuro-oncologist, emailed Young with more specfics about the MRI. Here it is in his own words:

"The MRI is really good news—I’ve seen it. The best we’ve seen in months! Still a 9 mm enhancing lesion at the pineal, by my measurements, but remember that once free of tumor, residual scar (gliosis) or cyst would not be unusual here. And, enhancement with the gadolinium is normal in all people at this region. Way to go, Jake!"

It will be wonderful if that turns out to mean that Jacob is in remission, and we're done, but since we can't be certain, Young is continuing to research back up treatment plans.

Meanwhile, Jacob is getting stronger every day. Eating is still a challenge. Actually keeping a sense of humor after cooking several rejected meals in a row is a challenge for me, but it's coming along slowly.

The key to keeping our spirits up has been visits with friends. We had a great visit and some rousing games with John and Ruth. I've gotten to have lunches with Deborah, Joni and Tammy. Jacob's pals James and Wes from our neighborhood came on wednesday:


One of the other families here at RMcD House told about a great park nearby and we've gotten out there almost every day. It's secluded and private, so Jacob run around without his respirator:


Alex and Letty came down every day of the long weekend:


And Aunt Susan and family came too:


Nueva friends Kyle B. and Spencer met us there on sunday:


Patty brought Sparky and her dog (Sparky's littermate) Audrey over to Demian and Lorraine's house to meeet their dog Luna:


And this morning Lynne S. and family brought a beautiful bowl of one thousand cranes the whole family had folded for Jacob. They couldn't come in because of possible viruses but they waved through the window.


There was serious oversight on the birthday list last week: Grammie Vee's birthday!