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Thursday, October 22, 2009 1:50 PM CDT

Oliver turned five yesterday, October 21st. Yea!

Tuesday, March 17, 2009 4:43 PM CDT

Oliver recently passed the three-year mark of his remission. He's a happy, healthy, active preschooler!

Tuesday, October 21, 2008 5:58 PM CDT

Today, October 21st, is Oliver's fourth birthday. Isn't he handsome?

Wednesday, August 13, 2008 10:30 AM CDT

This is Oli hanging at Denver International Airport prior to returning home after a two week visit with family.

Saturday, March 15, 2008 11:11 PM CDT

Thursday, Oliver had his 2-year post-2nd transplant appointment with the transplant doc at Doernbecher. As expected, everything from cardiology to endocrinology reports looks great. Oliver is a thriving, normally developing 3-year-old. We're having a great time with everyday activities, sports camps and play dates, and we look forward to pre-school in the fall. As usual, thanks for checking in.

Monday, February 11, 2008 5:58 PM CST

Nothing new, except for a new photo (by request). This is Oliver on the sledding hill in Denver in December.

Monday, October 22, 2007 10:40 AM PDT

Oliver is three! We had a 21-kid birthday party yesterday and the birthday boy had a great time. Oli and Jacob are happy and healthy.

Please see the new pictures, too.

Wednesday, September 5, 2007 3:10 PM CDT

Hi everyone. Our friend Ed Smith is competing in a 1/2 Ironman triathlon this coming Sunday in support of the Leukemia & Lymphoma Society. Oliver is one of Ed's two "special heroes". You can visit Ed's website here

Oliver is doing great and we're all excited to celebrate his third birthday in late October. Amazing.

The picture above was taken in the park outside our house two weeks ago during the Hillsboro Airshow. Judging by the earplugs Oli is wearing I think the Blue Angels were performing at that moment.

Also (for those who've known us a long time) yes, that looks like Lazlow with Oliver, but Laz died over three years ago. He'd be what, 17 now? That's Brooks, our favorite neighborhood dog.

We hope everyone out there is doing well.

Sunday, May 27, 2007 1:18 AM CDT

Thursday was the 2-year anniversary of the very worst day of our lives. We've had a few more horrible days since Oliver's diagnosis. But life is good now. Oliver continues to thrive. He's a happy, healthy, normal 2-year-old. We made it past this anniversary without falling apart. We're much stronger now.

Entries will continue to be less frequent. We will post any news if we have any. Please remember, no news is good news.

Our good friend Ed is back and raising money for the Leukemia and Lymphoma Society through Team in Training. This year he's training for the Big Kahuna 1/2 Ironman on September 9th. He has set his fundraising goal to $5000 and would appreciate any support anyone could provide. Check-out his website: http://www.active.com/donate/tntsac/tntsacESmith1

Thanks, once again, for all your support over the last 2 years. We couldn't have managed without you.

-Robyn

Sunday, May 27, 2007 1:18 AM CDT

Thursday was the 2-year anniversary of the very worst day of our lives. We've had a few more horrible days since Oliver's diagnosis. But life is good now. Oliver continues to thrive. He's a happy, healthy, normal 2-year-old. We made it past this anniversary without falling apart. We're much stronger now.

Entries will continue to be less frequent. We will post any news if we have any. Please remember, no news is good news.

Our good friend Ed is back and raising money for the Leukemia and Lymphoma Society through Team in Training. This year he's training for the Big Kahuna 1/2 Ironman on September 9th. He has set his fundraising goal to $5000 and would appreciate any support anyone could provide. Check-out his website: http://www.active.com/donate/tntsac/tntsacESmith1

Thanks, once again, for all your support over the last 2 years. We couldn't have managed without you.

-Robyn

Sunday, April 8, 2007 5:27 PM CDT

Our SUPERhero (bone marrow donor big brother) is 6-years-old! Happy birthday to Jacob!

Thanks to Super Jake, Oliver continues to be very happy and healthy. No news is good news.

Thanks for checking in.

Thursday, March 15, 2007 2:23 PM CST

Preliminary results of Oliver's annual tests show no sign of leukemia!

Thanks for checking-in. No news is good news these days. We'll keep you posted if anything changes.

Monday, March 5, 2007 2:23 PM CST

Once again, we have the Children’s Cancer Association to thank. Last weekend the CCA offered their amazing Caring Cabin to us. “The Alexandra Ellis Caring Cabin, the first of its kind in the Western U.S., was created to provide families a serene escape from the sterile environment and painful procedures of hospitals.” Oliver, Jacob, Grandma Dee, Grandpa Ben, Robyn and David spent 4 days in the “cabin” in Pacific City.

Last year when Oliver relapsed, we were faced with horrifying decisions to make about treatment and we were forced, once again to seriously consider the possibility that we might lose Oliver to leukemia. Emily, one of the music therapists with the CCA (Music RX is one of their programs…bringing music to the hospitals) mentioned the Caring Cabin. At that time, I contacted the appropriate person to see if we could stay there. The Cabin was expected to open last January but did not until October…when Oliver was out of treatment and doing much better and therefore not qualified to stay at the Caring Cabin (which is offered to children who are currently in treatment or in more critical conditions). Well, the incredibly generous staff at CCA remembered that we had inquired about the cabin back when Oli was very sick and decided to invite us anyway.

We were all absolutely blown away by this house and the property on which it sits…there’s even a lake with a little fishing boat! The CCA had left a rock with Oliver’s name carved into it for us to place with other kids’ rocks along the path to the lake. The community center folks in Pacific had made a beautiful blanket and hat for Oliver as well. Anyway, the treatment was royal. We enjoyed every minute!

We are approaching the 1-year anniversary of remission and 2nd transplant (March 14). Oliver has a bone marrow biopsy, aspirate, spinal tap and EKG scheduled for Wednesday. We expect all tests will be clear and leukemia-free. Oliver’s such a happy and healthy 2-year-old these days.

Thanks so much for checking in on Oliver. And, thank you so much to the CCA for the weekend at the Caring Cabin, the Room Make-Over, for honoring Oliver as one of the 2006 Heroes, and everything else you do!

Friday, February 9, 2007 11:18 PM CST

We just spent a very fun 2 weeks in Denver...Oliver's first trip since he was diagnosed in 2005. Oli continues to be healthy... he handled a recent cold very well. He has another blood draw and check-up at the end of the month and a bone marrow biopsy in March then nothing for 3 months.

Thanks for checking-in.

Tuesday, January 16, 2007 8:42 PM CST

We had the privilege of meeting some pretty amazing people this past weekend. Bev, the Dreamcatcher coordinator at the Childrens' Cancer Association, organized a room make-over for Oliver and Jacob. For those of you who are not familiar with the Dreamcatcher program, it is very similar to Make-a-wish. Our wish when Oliver was ill, other than for him to be totally cancer free FOREVER, was for the boys to have a room to share complete with bunk beds.

Saturday and Sunday a group of 9 volunteers came to the house and completely re-made Jacob’s room into an aviation themed bunk room. Not only do the boys have bunk beds, but they have new paint, decorations and amazing toys and effects like a moon night light and solar system light.

Thank you so much Bev, Tiffani, Dan, Riley, Jodi, Jamie, Chase, Julie, Kim and Chris and the Childrens’ Cancer Association. You have given Oli and Jake (and me and David) an incredible gift. Your generosity is astounding.

Oliver seems to be in great health and really enjoying life. He has another blood draw tomorrow. We assume all will be normal. Then we head to Denver for a visit with family.

Thanks for checking in.

Wednesday, December 20, 2006 10:49 PM CST

Oliver had his monthly blood draw and check-up today. Everything continues to look great. His blood counts are normal. Dr. M examined Oli from head to toe and he agrees that Oliver is looking very good.

January 8 is the 1-year anniversary of our worst nightmare, relapse. Yes, Oliver looks great but we continue to be "cautiously optimistic." Getting past this anniversary will be another milestone for us.

I know that many of you wonder and begin to worry about us when we don't post an update for a while. We're trying to live a normal life with a 2-year-old and a 5-year-old. They keep us very busy. We will post an update if there is any news at all, good or bad. Oliver's next appointment isn't until the end of January. If you don't hear from us it likely means we're all doing just fine.

Thank you for checking in.

Happy holidays!

Friday, December 1, 2006 11:51 PM CST

Once again we breathe a sigh of relief. All of Oliver's tests came back negative for leukemia...ALL CLEAR. David and I are off to Mexico in the morning. The boys are looking forward to a week with Grandma Dee and Grandpa Ben. David and I owe a BIG thanks to Kathy and Ron and Grandma and Grandpa for making this trip happen for us. Thank you all so much.

Next up for Oli: another check-up with blood draw the end of December and another bone marrow biopsy and spinal tap in March.

Thanks for checking-in and offering your prayers, positive vibes and support. They're so much appreciated.

Wednesday, November 29, 2006 9:50 AM

* Brief update:
Monday's procedure went just fine. The line placement in the hand was a little traumatic, but Oli's just fine now. Preliminary results are good. We're hoping to get pathology as soon as tomorrow...before David and I head off to Mexico. We'll post any news we hear just as soon as we hear it.

Thanks for checking in.

Monday, November 20, 2006 9:31 PM CST

Don't let the picture fool you, Oli's very happy these days. I just happened to catch him with the pouting lip, I'm-about-to-cry look on his face.

Lots of family coming to town for Thanksgiving, then Robyn and I are going on a real-life vacation to Mexico while my folks watch the boys here in Oregon.

I was wrong re Oli's quarterly tests (see below). They are actually scheduled for November 27th, next Monday.

Wednesday, November 1, 2006 6:59 PM CST

I only took two pictures of the boys, and here's the better of the two.

They had a great time trick-or-treating, and Oliver had an absolute fit when I brought him home while Jacob and Robyn stayed out for a bit longer. He got over it.

Oli had his monthly clinic visit on Monday this week. His blood counts are all normal. Nice. This was his first visit since the removal of his Hickman (central line), so this was his first poke (while fully concious) in over a year and a half. Robyn and Jacob watched and said Oli did great and barely even flinched. He also got his flu shot, which apparently hurt a bit more than the blood draw...

Oli is scheduled for his 3-month bone marrow and spinal draws the second week of November.

I wish we could freeze time between now and then.

Saturday, October 21, 2006 11:28 PM CDT

I could get all excessively emotional about the significance of Oliver reaching his second birthday today, but I won't.

Suffice to say that Oli celebrated his second birthday today in a very normal two-year-old fashion. He had family and friends around, received many presents, ate pizza and cake, and repeatedly sang happy birthday to himself.

He's a very happy boy.

Sunday, October 15, 2006 3:58 PM CDT

* We've just recently learned that one of the kids we met while in the hospital was been diagnosed with AML as a secondary cancer...he's a Ewings Sarcoma survivor and he's only 6. A marrow donor is needed for this little guy. For donor information, please click on the following link: http://www.dkmsamericas.org/patients/index.html

Please keep Gage in your thoughts. Thank you.

That's Oliver and Jacob sharing Dad's iPod yesterday.

The boys are doing great. Nothing new to share healthwise. I'm happy to report that.

A 30-year friend of David's - Tim Schauer - completed a century (100 mile) bike ride put on by the Lance Armstrong Foundation in Austin, TX last week. Tim raised $1,000 to support cancer research. Nice going, Tim!

Thank you for checking in.

Wednesday, October 4, 2006 6:20 PM CDT

Hi, there!

It's your Oli journal update, brought to you today by a special guest contributor, Oli's new cousin, Sushi (Baby Sarah). My mom, Janny, and I are visiting the Portland crew from Tel Aviv, and we're having a blast.

Although I'm only three months old, I'm having a great time with my cousins, Oli and Jacob, and they're both allowing me to play with their toys and spit up all over their house. My family tells me that Oliver has been really sick, but you'd never know it. He is bright and smiley and rambunctious, and has an even more impressive vocabulary than I do! We have had a great time playing with Uncle Matt (in from Denver), going to the supermarket (Oli rode in a race-car grocery cart), and playing outside in the circle. Oli got his line out a couple of weeks ago, and is almost perfectly healed. I wish that I were big enough to join in the nightly bath adventures upstairs with Oli and Jacob - it sounds crazy up there!

Aunt Robyn asked me to mention that Oli has only monthly clinic visits now (next one is end of Oct), and that all appears to be going great. Thanks for checking in! (translation from the Hebrew & the baby-talk provided by JT)

Wednesday, September 20, 2006 11:13 PM CDT

Oliver had his line removed this afternoon. The minor surgical procedure was expected to take about 5 minutes...it took over an hour. Mom and Oliver were momentarily traumatized but fine now. This is what happened.

Oliver handled not being able to eat all day like a champ. We met a Nurse Practitioner from the surgical team. She said she'd done many line removals. She said that in some cases the line is embedded and needs a little more work. She said she's never had a procedure like this take more than 20 minutes.

Not even 5 minutes after I left the room (I was waiting in the hall), her nurse came out of the room and said she was going to find a surgeon. She found two. 30 minutes later (yes, a nurse came out every few minutes to reassure me and tell me that "Oliver has become very attached to his line (chuckle, chuckle)") I heard Oliver screaming. It lasted forever...probably just 5 minutes. Then he was quiet. Finally, a senior surgeon worked on it. He was the one who freed Oliver from his line. It took over an hour. Oliver woke-up after 35 minutes WHILE THEY WERE WORKING ON HIS CHEST and started screaming. More screaming because they had to place a temporary IV line in his hand and another in his foot in order to administer more anesthesia.

So, the line is out. Oliver's remarkable...he doesn't seem to be in much pain at all. No stitches. Not much blood. Bath in two days.

Friday, September 8, 2006 11:06 AM CDT

No news is good news. Oliver continues to be happy and healthy. He had a very long appointment at the clinic on Wednesday for an IvIg infusion. Thanks to my very good friends, Lee and Erica, the day was a breeze. Oliver was totally entertained and I loved the company. Thanks so much, girls. Oli's next appointment is September 20th for blood counts and line removal. Thanks for checking in.

Tuesday, August 29, 2006 6:37 PM CDT

Last year my friend and co-worker Ed Smith completed his first triathlon, a fundraiser for the Leukemia and Lymphoma Society.

This year another friend and co-worker, Linda Baker, is raising money for the L&L Society by competing in her first marathon.

Both Ed and Linda name Oliver as their "Personal Hero", and he swims, bikes, and runs right along with them.

Linda's Team In Training website is listed below in the links section. If the link's not visible, you can visit: http://www.active.com/donate/tntor/tntorLBaker


Tuesday, August 22, 2006 6:37 PM CDT

I was just about to write another cheerful blog about how well Oliver is, then the clinic called. Really, there's nothing to panic about. Oliver's IgG is low so he'll have to have IvIg at our next visit. Things have been going so well and we've had such short clinic visits lately that to hear that at our next visit we'll have to be there for at least 5 hours and Oli will be tied to an IV pole is a huge bummer. But, we don't have to go to the clinic at all for 2 weeks. We've scheduled a day to have his central line removed. Soon we'll be moving to monthly clinic visits. And, really, Oliver looks and feels great.

Monday, August 14, 2006 9:20 PM CDT

Oliver's counts are on their way back up! He's looking good and seems to be feeling good. At the clinic today, we learned that the bone marrow AND CNS are clear of leukemia. Hi IS still in remission. Given this news, we are going to begin the tacrolimus (anti-rejection med) taper and we're actually making plans to have his line removed. Dr. N. does not have an explanation for the dropping counts other than she saw just a few white cells (eosinophils) in his marrow which may indicate a little graft vs "something" (could be Graft vs Host disease or could be Graft vs Leukemia...again, there is NO sign of leukemia)or just a passing virus. All good news here today.

Thanks for checking in.

Thursday, August 10, 2006 11:05 AM

Preliminary tests show no sign of leukemia. Once again, we're very happy to hear Oli is cancer-free (so far... We're still waiting for a few tests) but we're still concerned about the falling counts. To us, Oli looks better than he did the last two weeks. And, Jake has had a cold and now David's got a bad bug. Perhaps we're passing around some bug that happens to make Oli's counts drop. Hopefully, we'll learn more Monday.

Tuesday, August 8, 2006 12:33 AM CDT

New pictures posted

First off, Oliver is happy and enjoying his days playing inside and out, going for runs and bike rides with his Mom, and playing "Intel Man", Spiderman, wrestling, etc with his Brother. We're really loving seeing him develop. He has a limitless vocabulary, and is stringing together 2, 3 and 4 word sentences appropriately. Sometimes we almost want to ask him to give it a rest! He's getting a hang of running, and has his first pair of Nikes. And he loves playing in the bathtub.

On the other hand, Robyn and I have noticed a very slight change in Oli's appearance and activity over the past two weeks. And his weekly blood counts have been slowly dropping with no obvious explanation.

His 3-month bone marrow and intrathecal aspirate and biopsy were originally scheduled for the end of August, but they moved them up (the doctors said it was for scheduling reasons) to yesterday. As usual, he came through the procedures perfectly, as if it was just another day.

Now we have to play the nerve-wracking waiting game again. At least we had a couple of months in which this whole mess wasn't the primary thing on our minds.

Friday, July 28, 2006 8:52 PM CDT

Last night we were reminded of how fragile and unique Oliver is. He was acting fine, totally fine...running around with Jacob, eating, drinking, having fun. But he had a very low grade fever, 99.9. He hadn't had ANYTHING in so long that just a slight temp worries us. I know, 99.9 is really nothing, but it forced me and David to consider the fact that we might be spending the night in the hospital. I called the on-call doc to remind us the cut-off temp (101.0)for a child who's 130 plus days out from his second bone marrow transplant. I was in Oli's room several times in the night to make sure he didn't heat-up. He didn't. Thank goodness, nothing came of the fever at all.

Saturday, July 22, 2006 8:52 PM CDT

We continue to trudge along in what I described to a coworker this week as our family's latest "normal". Oli's doing regular 1 1/2-year old things, except for the fact that:

-he can't be around crowds, especially other children
-he can't play on playgrounds
-he needs to pretty much wear armor when out in the sun
-he has a tube coming out of his chest
-he takes seven doses of medicines daily
-he (and usually Robyn) see the oncologist every Monday for a blood draw and an exam, and we all hold our breaths knowing that the results of that visit at best will allow us to continue living as described above, and at worst will throw us back into hell

Yes, you got negative, anxious David tonight.

P.S. Obviously, it's not all gloom and doom. Oli is perfectly happy. The new pictures accurately show his great disposition and his happiness (and his hair!). He has no idea he's unique. Sometimes it just sucks to know as much as the rest of us do.

Wednesday, July 19, 2006 0:47 AM CDT

Oli's weekly clinic visit went smoothly yesterday (Monday). His counts remain normal and there was nothing said by the docs that is notable.

We'll continue with these weekly clinic visits for a long time.

Oli and the rest of us got to enjoy several hours at the Hillsboro Air Show on Sunday. Lots of "airplane! airplane! helicopter! helicopter!" exclamations. Great fun for us all.

I can't remember if I've expressed it, but it probably could go without saying that we are very, very, very fortunate to have excellent health insurance.

Wednesday, July 19, 2006 0:47 AM CDT

Oli's weekly clinic visit went smoothly yesterday (Monday). His counts remain normal and there was nothing said by the docs that is notable.

We'll continue with these weekly clinic visits for a long time.

Oli and the rest of us got to enjoy several hours at the Hillsboro Air Show on Sunday. Lots of "airplane! airplane! helicopter! helicopter!" exclaimations. Great fun for us all.

I can't remember if I've expressed it, but it probably could go without saying that we are very, very, very fortunate to have excellent health insurance.

Tuesday, July 11, 2006 11:41 PM CDT

Oli's health continues to be good. We're tapering his prednisone and his counts are holding. His appetite has decreased; he's no longer demanding 4 waffles with peanut butter every morning. Another thanks to Candlelighters for sending us to the airshow this weekend. We're so looking forward to being there (we usually watch the show from our house).

Oli has clinic visits once a week now. Dr. N is giving us a little more wiggle room to "live", like going to the airshow, but we still have to avoid crowds and playgrounds.

Thanks for checking in.

Thursday, June 29, 2006 12:00PM

Oliver had his (hopefully) last dose of chemotherapy today. The LP was quick and easy. Counts continue to be good.

Sunday, June 25, 2006 11:18 PM CDT

We're home from an amazing weekend in Newport. We all had a terrific time. Oli played in the sand for the first time in his life (he was so young when he was diagnosed and has been unable to enjoy getting dirty until this trip)!

Candlelighters and Terry Fragner of US Helicopters in Newport provided an incredible weekend of pampering. We feel very spoiled and very fortunate. We stayed in a beach-front hotel suite, had helicopter rides, all meals provided, gift certificates to local shops...candy and ice-cream..., a new haircut for me (they made an appointment for me to have anything done at one of the hair salons) and a trip to the Oregon Coast Aquarium. They gave us gift certificates to so many other things that we just couldn't fit all of them into our schedule (a day cruise, for example). The boys were terrific little travelers...the 3-hour car ride was great, both boys slept very well in the hotel and neither boy got terribly grumpy ALL WEEKEND! We're all so totally exhausted yet in great spirits tonight.

Oli has a check-up in the morning. We expect everything to be just fine.

Good night.

Thursday, June 15, 2006 10:30 PM CDT

Oliver had another clinic visit today and we were sent home without having to have a blood product again! Oliver seems to be doing very well...he's very happy, hungry and active so he's been laughing, eating and playing a lot.

Next week will be another milestone...100 days post 2nd transplant. Candlelighters (a support group) is helping us celebrate by sending us to the beach for the weekend. We're all looking forward to a little vacation. We will also begin the 7-week prednisone taper next week. We will be very happy to have Oli off steroids.

Thank you for checking in.

Friday, June 9, 2006 8:30PM CDT

No news is good news. Oliver's counts are holding. He remains on relatively high doses of prednisone (and tacrolimus, ursodiol, lansoprazole, dapsone, ganciclovir infusions twice a day and fluconazole). The flagyl course is complete and therefore Oliver is no longer in isolation when we're in the clinic. Monday, Oli has a scheduled intrathecal LP (back poke)...only two more.

We are enjoying Oma Barbara and Aunt Debbie this weekend. Grandma Dee and Grandpa Ben arrive Sunday for Jacob's preschool graduation.

Thanks for checking in.

Tuesday, June 6, 2006 0:11 AM CDT

No platelets needed Saturday, Sunday, Monday or Tuesday. Counts are slowly recovering. Oli's disposition is improving as well. As long as he's well fed he's happy...and he has so much energy!

Our friend Joshua Pedroza is doing the Lance Armstrong Livestrong ride here in Portland in July in honor of Oliver. He's just about met his pledge goal but needs a little push. If you'd like to support our friend, please make a donation to the Livestrong foundation in Oliver's name. "Net proceeds from the event support the Lance Armstrong Foundation's mission to inspire and empower people affected by cancer. The LAF serves its mission through advocacy, public health and research." The third link below takes you directly to Team Oliver's page.

Sunday, June 4, 2006 0:11 AM CDT

New pix are posted.

We continue to make our daily pilgrimage down to OHSU. Oli's platelet issue hasn't yet been resolved, so they need to keep a very close eye on his counts. Today was the first day in a week that they sent us home without a transfusion. His platelet count still dropped overnight, just not as much as it has been. Hopefully this is the start of a trend.

The prednisone that Oli takes twice each day is wreaking havoc on his emotions and demeanor. He is a handful for us every waking hour. And the appetite! Yesterday, in addition to many other foods, he consumed six waffles. Waffles are his thing. "Waffle! Waffle! Waffle!"

Yesterday Oli had his scheduled back-poke under sedation. Intrathecal chemotherapy and an aspirate of his central nervous system fluid. This type of procedure has become frighteningly routine for us.

Wednesday, May 31, 2006 2:00 PM CDT

Oliver's platelet problem continues. Monday, it looked like the prednisone was helping but Tuesday his platelet count was back down to 4. Oli had platelet transfusions yesterday and again today. Today, his platelet count was tested 15 minutes after the transfusion and 60 minutes after the transfusion to see what might be happening. Normally after a transfusion, the platelet count slowly rises (to some point). Oli's dropped pretty dramatically...15 minutes after the transfusion today his platelet count was 43. An hour later they were 33...they're going the wrong way.

Oli still has a bacterial infection that is keeping him in isolation to protect the other patients. So, we are confined to a tiny room for hours at a time. Yesterday, Jacob, Oliver and I were locked in a room for 6 hours. Jacob was such a trooper and was just on the verge of a meltdown when David surprised us and took Jakey out to the playground for 30 minutes. Today, Oli and I were there for 4 hours...same room.

Monday, May 29, 2006 3:02 PM CDT

* Those of you who are in the Portland area, look for Oliver this week in a KATU channel 2 commercial with Natalie Marmion. She and her crew were filming a commercial for the upcoming Doernbecher telethon and asked if Oli would like to sit on her lap. He was happy to help.

Up and down and back up we go.

Oliver's counts have steadily improved. He received about seven platelet transfusions last week, but hasn't needed one since Friday. We've had to take him to OHSU each day this weekend, just so the docs can keep track of his counts and ensure they continue to climb.

They'll probably not be able to chalk up last week's nightmare to anything in particular. His counts fell, they ruled out relapse, they put him on several medications to fight a variety of possible causes, and his counts have recovered.

We'll take it.

Thursday, May 25, 2006 1:43 PM CDT

*UPDATE: 8:30PM

Tonight we breathe another sigh of relief. Pathology on two of the three tests done on the marrow came back negative for leukemia. Dr. N. is encouraged, and again optimistic.

Oli had another platelet transfusion today (three yesterday). His body seems to be destroying all platelets and no one is quite sure why. Several tests have been done and a few things have been ruled-out...including leukemia. Oli did test positive for one bacterial infection so he began flagyl today. Dr. N. is wondering if this could be graft vs host disease so Oli was put back on a high dose of prednisone (steroid) and higher level of tacrolimus (anti-rejection med). Blood cultures were sent to look for any infection including CMV again. Finally, Oliver's counts dropping could be a side-effect of the ganciclovir infusion from a couple of weeks ago. Right now, they just don't know what's wrong. We are sleeping at home and going in for platelet transfusions daily.

Thank you for checking in. We'll post more news when we get it.

---------------------------------------
Yesterday Oli had an unscheduled bone marrow biopsy due to his across-to-board falling blood counts.

We are seeing the doctors today at 2:00pm, and we expect to hear the worst.

It has been a year and a day since Oliver was diagnosed with leukemia.

Wednesday, May 24, 2006 1:18 AM CDT

Tuesday night - Oliver had critically low platelets yesterday and received a transfusion. Today the same thing happened. For some reason his platelet count is suddenly not recovering, even with transfusions.

They admitted him again, so he and Robyn are at OHSU now. They're trouble shooting, trying to find the problem.

This kid just can't catch a break.

Sunday, May 21, 2006 9:17 PM CDT

No news is good news.

Aside from the medications, clinic visits, and bi-weekly sedation and spinal taps we're carrying on like a relatively normal family.

Sunday, May 14, 2006 10:34 PM CDT

Happy Oliver. Eating like a horse. Slept all the way through the past two nights.

Happy Oliver = happy Jacob = happy Mom = happy Dad

--------------------------------------------------------

Clinic visit Monday, and intrathecal aspirate and chemo on Wednesday this week.

Thursday, May 11, 2006 0:09 AM CDT

Oliver is much, much better. He's acting like his old self, his walking is normal - in fact, he's practically running. He's happy and playing most of the day, and he's sleeping reasonably well.

He and Jacob play together the way brothers were meant to. It's amazing to witness.

Sunday, May 7, 2006 6:40 PM CDT

Oliver and Robyn are home after spending another two nights in the hospital. We'll continue to treat Oli's virus using home-health assistance.

Jacob and I spent the weekend in a hotel and at urgent care, suffering our way through various viruses and infections. Still, we called it our little "vacation" the whole time.

Oliver is still very agitated, but is much better than he was a week ago. It's looking like the neurological problems are abating.

Next clinic visit is Thursday.

New pictures coming soon.

Friday, May 5, 2006 11:35 PM CDT

Things happen so quickly around here. David has had a fever for 2 days and Jakey came running in our room in the middle of the night last night with a barking croup cough. I sent David and Jacob to recuperate in a hotel for the weekend.

At around 7pm tonight, I got a call from one of our docs who informed me that CMV (a virus) DID turn up in Oli's spinal fluid. So, here we are again, at Doernbecher. This course of treatment will be an IV antiviral (Ganciclovir) for 7 - 10 days. It is possible we may be able to do this at home...depending on some tests just taken.

So, the doctor I spoke with this evening said that Oli does indeed have toxicity to methotrexate in addition to CMV. Both may be causing all his recent symptoms.

Oli is already responding to the treatment for the toxicity. He's still sleeping a ton and begging for food most of his awake time, but he is a little happier and playing some.

Thanks for checking in. Good night.

Thurs, May 4, 2006 11:35 PM CDT

Additional review of yesterday's MRI leads the doctors to believe that Oli isn't suffering from Post Radiation Syndrome. Rather, they now think he's being effected by Methotrexate toxicity.

Methotrexate is the chemotherapy they administered to his spinal fluid two weeks ago. They still need to give him this chemo five more times over the next 10 weeks.

He's taking steroids (Prednisone) to ease the swelling in his brain. Today they also put him on Leucovorin (folate), which is an antidote to Methotrexate.

He was a bit better today than yesterday, which was among the worst days he's had in the past year.



Wednesday, May 3, 2006 2:25 PM CDT

* update 8:40 PM:

Post Radiation Syndrome. Initial tests revealed no cancer or tumor or viral infection. Docs are thinking Oli's behavior is due to the effects of radiation. We have started a 5-day course of Prednisone. Let's hope it works. Oli, Jacob and I will spend yet another day at the clinic tomorrow. We're exhausted, emotionally and physically.

Oli's not doing well. We've had several very difficult days in a row.

It appears he's having some type of neurological issues. Aside from just "not acting like Oli", he's having difficulty walking, he's y and crying 95f his waking hours, and he's continually asking to eat, eat, eat. No matter how much we feed him he cries for more.

He went in today for his scheduled intrathecal aspirate and chemo and when the doctors saw his behavior they immediately ordered an MRI for this afternoon. They went ahead and sedated him and took a sample of his CNS fluid, but they held off on the chemo in case that is the cause of his difficulties. He'll be sedated again for the MRI.

Possible causes in no particular order: leukemia, tumor, adverse effects of chemo, "radiation effect", virus.

Sun, April 30, 2006 8:24 PM CDT

* so many of you have asked how you can help us. We have a friend who is doing the LIVESTRONG ride here in Portland in honor of Oliver. If you'd like to support Joshua, click on the link below. Thank you.

Oli's back home. Two days and nights in the hospital and the fever went away. Clinic visit tomorrow.

Friday, April 28, 2006 8:11 PM CDT

Back in the hospital.

We took Oli in yesterday for a routine clinic visit. He needed platelets and blood, and we ended up being there from 9 am till 6 pm. By the time we left he was running a fever, so they gave him a dose of IV antibiotics and asked us to come back today.

We went in this morning and he still had a fever, so they decided to admit him so they could run an entire course of antibiotics.

If all goes well he'll be there for 48 hrs.

Tuesday, April 25, 2006 7:36 PM CDT

Let's see. Friday was a good day. Saturday was a day bad enough that Robyn had to take Oliver to OHSU to be looked at by the doctors. Sunday was a good ol' Oliver day, and Monday was another very good day, including a scheduled clinic visit.

Today has been up and down. At this moment Oli is in the other room frantically crying and screaming "owie owie owie!" for no discernable reason.

More clinic visits every week. Sedated intrathecal chemo (with CNS fluid testing) every-other week for the next 10 weeks.

So goes our new life.

Last scheduled visit from Oma B was last week. Grandma D goes home to Denver for good this weekend. Nice visit with Grandpa Ben during the past week. The boys loved seeing him.

Friday, April 21, 2006 1:36 PM CDT

Oliver slept 3 hours yesterday and 12 hours straight last night. This morning he is a new little man...our happy little Oli is back today.

Today we took Oli to the clinic for a check-up and we were told ALL tests were clear. No leukemia to be found in the marrow or the CNS.

Today is a very good day. Thanks for checking in.

Thursday, April 20, 2006 4:36 PM CDT

Oli hasn't been acting "right" the past week, and in some ways it's been very similar to his behavior in December, right before they found the relapse. It's been a distressing week.

Yesterday was one of the most difficult days of the past year for us emotionally. Based on Oli's behavior we were (and still are) very worried that we were going to get the same news the docs delivered on January 7th.

For those of you who've been playing along since the beginning, you know that if the day comes that Oliver is diagnosed with another relapse, that's the day curative treatment ends.

They found white and red cells in his spinal fluid. Ideally they wouldn't have found either. Most concerning are the whites, which could be leukemia. The initial analysis showed that they are not leukemia. That's the good news. They're conducting flow cytometry and other tests which could prove the initial analysis wrong.

The further bad news is that his behavior and appearance today continue to be disturbing.

We'll hear bone marrow results over the next several days.

Sunday, April 16, 2006 7:40 PM CDT

Six nights in a row at home!

Things are going well. Oli is sleeping and eating fairly well. He was on IV hydration the first three nights at home, but that has been discontinued.

We give him around 10 oral doses of medications each day. Aside from an occasional gag/vomit response, this usually goes smoothly.

Oli goes in for a clinic visit Monday afternoon.

Wednesday he'll get an intrathecal (spinal) dose of chemotherapy. The doctors plan to give him three of these over the next several weeks. The idea is to knock out any residual leukemia that may still be present in his CNS.

Also on Wednesday Oliver will have a bone marrow biopsy - his first since his transplant. As will be the case for the rest of Oli's life, we are nervous and worried about what that procedure will reveal.

Tuesday, April 11 2006 2:20 AM CDT

WE ARE HOME!!!!

Oliver slept from 8:30 last night to 9:00 this morning with one brief interruption for pedialyte. He's eating like a champ and THRILLED to have Jacob to play with.

Oli and David are at the clinic this morning for platelets. Oma Barbara and Jacob are at the grocery store. And I am ALONE in my house.

Life is very good right now.

Monday, April 10, 2006 2:20 AM CDT

The roller coaster ride continues. Our update three days ago had Oliver inconsolable much of the day and night.

As of yesterday (Saturday) his mood is great 90f the time, his blood counts have continued to rise and his ANC (good infection-fighting white cells) has risen above the magic 500. He's completely off the pain meds, all of his other meds have been converted from IV to oral, no more TPN, and he began eating solid food. He hadn't eaten solid food in over three months!

He finally was allowed to roam the halls outside of his room after 30 days of confinement.

All of this leads to the very strong possiblity that we will all be sleeping at home as soon as tomorrow night (Monday).

Thursday, April 6, 2006 12:38 AM CST

Not quite sure what to write today. On paper, labs, etc., Oliver is looking great. He has a white count of 1200 and an ANC of close to 400. His liver and kidney labs look good...normal. Oliver managed to avoid dangerous organ toxicity from the chemo and radiation. There are some doctors who did not believe Oli would be with us at this stage in the game. He is an amazing child. We're actually talking about going home next week!

So, the negativity: Oliver's behavior has changed dramatically in the last four or five days. Since May, he has been such a trooper. He had only had a handful of bad days. A few days ago, Oliver started having major meltdowns. He screams and cries for no apparent reason sometimes for up to an hour at a time. I thought it was pain, of course; any screaming and crying looks like pain to me. David thought it was 18-month-old tantrums. It could be either of those or any of the following: he's being weaned off fentenyl...perhaps he's having minor withdrawl symptoms. He appears to have mild GVHD...a red, itchy rash on his neck and thighs and it could be places we can't see. Perhaps the itching is more severe than he's able to tell us. He's being weaned off his IV nutrition to stimulate an apetite. Perhaps he's hungry or thursty and doesn't recognise what he's feeling. His sleeping is totally erratic lately. Perhaps he's totally exhausted. He's been locked in his room for 23 days. Perhaps he has cabin fever. We just don't know what's wrong. No one, doctors or nurses, is terribly concerned. Some chuckle "knowingly" as if to say, "here come the terrible twos." I have a hard time believing that. This change in behavior is too drastic and THIS child has cancer; who knows what's going on inside him.

On a positive note, our Jakey is going to be 5 tomorrow! He's such a big boy!

Thanks for checking in.

Friday, March 31, 2006 12:38 AM CST

* Thank you all for such warm journal entries. If you don't know Oliver or his family personally, it would be very helpful to us if, when writing your message, you would let us know how you learned of Oliver's plight. There are so many of you we don't know.

It's been a good week compared with last week. Oliver has been much more comfortable and playful. We were even able to reduce his Fentanyl pain medication a bit.

We've been able to keep infections and other complications at bay so far. When the doctors do rounds each morning they give him a quick exam, say they're pleased so far, and direct Oli and us to "keep on keepin' on".

Today is Oli's 18th straight day confined to his room. Tonight will be the 138th night he's slept in a hospital room since May 23, 2005.

Sunday, March 26, 2006 11:25 PM CST

Oli's been much happier the past two days. He's again a handful to keep up with during the day. He wants to constantly be doing something, moving all over his room. He's got at least three IV lines at all times, so one of us has to constantly manage his lines to prevent entanglement.

It's exhausting, but we'll definitely take this Oli over the one we've seen the past week or so.

Still waiting for his counts to show any sign of engraftment of his new cells.

Still confined to his room - 13 days and counting.

New pix posted.

Thursday, March 23, 2006 5:38 PM CST

No significant changes so far this week. We continue to await signs of engraftment of Oliver's new stem cells. And we continue to do everything possible to avoid infections and organ problems.

Oli's pain continues, too. He is receiving continual Fentanyl, and we've steadily increased the rate throughout the week. He wakes up in obvious pain several times each night. Our poor baby.

For those of you in Oregon, Portland radio station 99.5 is currently running a 26-hour long Doernbecher Hospital fundraising drive. They are broadcasting from the lobby and have a 24-person phone bank set up (right next to the lobby Starbucks). I'm not necessarily suggesting you contribute, but I've been listening and they are doing a great job of interviewing staff and patients, some of whom are in or have been in situations very similar to Oliver's. I think you can even listen over the internet. I appologize for the country music format. That's out of my control.

http://www.thewolfonline.com/Article.asp?id=182421

Sunday, March 19, 2006 8:06 PM CST

Oli's having a pretty hard time. His fever has spiked a couple of times, so they've put him on the full complement of antibiotics.

He's also apparently in a lot of pain. We put him on the PCA pain pump two days ago, so he is receiving constant Fentanyl.

Most of the time, day and night, he's most happy in the arms of one of us. Occasionally, like right this minute, he's happy and walking around his room and playing. I'd say he's happy and Oli-like about 10 percent of the time. 90 percent he's either asleep or miserable, or both.

Tuesday, March 14, 2006 8:06 PM CST

Today was transplant day #2. Jacob did a great job. He was excited this morning when he and I got up at 5:30 and came to the hospital. The doctors told us that Jacob was a model patient. He came out of the anesthesia just fine (except for one major vomit all over his father), and he has been home and happy since mid afternoon.

Oliver received the transfusion about two hours after Jacob donated it. Like the first time, it was uneventful.

Now we'll wait for the donated cells to engraft and start making new blood for Oli.

Sunday, March 12, 2006 10:26 AM CST

Oliver had a bad day yesterday. He was sick and agitated from the chemo all day. The nurses tried several drugs to control the vomiting and agitation. Our last try was Ativan.

At about 4PM yesterday, our nurse started a half dose of Ativan. About 5 minutes into the infusion Oli developed a red rash on his face and became unresponsive. Within seconds he was clearly struggling to breathe. The nurses quickly called a code. Within seconds the room was filled with doctors.

Anaphylaxis: An immediate and severe allergic reaction to a substance (eg food or drugs). Symptoms of anaphylaxis include breathing difficulty, loss of consciousness and a drop in blood pressure. This condition can be fatal and requires immediate medical attention.

Epinephrine was given in addition to fentenyl and a steroid to open his airway. He was stable around 5:30PM. We spent the night in the PICU under observation.

Yes, it was one of the most terrifying moments of my life. Once again, I was sure Oliver was going to die.

And for the third time in nine weeks David got an urgent phone call and had to make the drive from home to the hospital unsure of what he was going to find upon arrival.

We're back in our room now. Oli's feeling much better this morning. His LAST dose of chemo finished about 30 minutes ago. We expect him to be feeling generally "chemo-crappy" (as David likes to say) most of the day.

The incident last night did not effect our transplant schedule.

Our friend, Jill, just happened to be visiting yesterday afternoon. I'm so glad she was here. Hope you're not too traumatized, Jill.

Saturday, March 11, 2006 2:27 PM CST

Above you'll see a picture of Oliver from last night (Friday) giving me the touchdown signal. Either he's practicing to be an NFL ref, or he's pleased with the fact that about an hour earlier he completed his eighth and final dose of radiation.

Four days. Eight sedations. Eight, 18-minute long (very, very long) radiation doses.

This morning he had his first of two doses of chemo. He's a pretty happy guy in spite of the four days of severe diarrhea, and the vomiting that began about two hours ago.

He's napping now.

Tuesday, March 7, 2006 4:40 PM CST

Oliver started radiation today. I held him in my arms while the team sedated him, then we placed him on a table in a vault-like room. The docs and nurses strapped him down, positioned him under a giant X-ray machine, we left the room, and watched, via monitors, a sleeping baby being irradiated for 18 minutes. Amazing how we all had to evacuate the room during the process...and this is going to help my baby??

Monday, March 6, 2006 4:40 PM CST

Well, here we are again....even the same room! Jacob and David arrived at Doernbecher early this morning to check Jacob's blood again..and, again, Jacob was amazing. His blood checked-out fine. He has completely recovered from his bug, so here we go.

Oli begins TBI tomorrow for four days and chemo on Saturday for two days. Transplant is scheduled for Tuesday the 14th.

Thanks for checking-in. We'll continue to keep you all informed.

Monday, February 27, 2006 11:47 PM CST

It's Monday night and we're just beginning a surprise extra week at home.

Our day went something like this: We loaded both cars with all of our "hospital stuff" (toys, blankets, clothes, pictures, food) and the five of us (Oliver, Jacob, David, Robyn, and Grandma Dee). We went to OHSU prepared for a stay of at least five weeks.

I took Jacob to the clinic for a blood draw (to ensure he is ready to donate his marrow) while Robyn headed to Oliver's hospital room and settled in. She unpacked Oli's clothes, laid out his special carpet, made his bed, and unpacked toys, videos, and food.

After Dr. Nemecek looked at Jacob's lab results, she said that Jacob's apparently fighting a virus right now, so she can't begin Oliver's conditioning treatment. The main concern is that once Oli's treatment begins, there is no changing course or delaying the process. If Jacob's health next Tuesday, the planned transplant day, were as it is today, it would be risky to administer anesthesia to him. In this case we'd be in the unfortunate situation of having Oliver needing donated stem cells but with no donor.

As Dr. N put it to us, "Remember, I have two patients I have to take care of."

We talked with two doctors and neither feels that delaying everything by one week will put Oliver at greater risk.

We've all had a great six days and nights at home together as a family, and while in a way it was disappointing to have to head back home today, overall Robyn and I are thrilled to have a few more days with our boys, together.

Next Monday we will re-do everything we did today. As long as Jacob's bug is gone and his labs are normal, Oli's conditioning treatment will begin Tuesday morning (March 7th) and the transplant will be the following Tuesday (March 14th).

Oli will get four days of twice-daily Total Body Irradiation (TBI), then two days of heavy duty chemotherapy, then a day off, then the transplant.

In the unlikely event that Jacob still has his bug next week and a further delay is necessary, Oliver will have to begin an unscheduled round of chemo. This would push back the conditioning/transplant process by up to a month, would make Oliver feel chemo-crappy, would increase the possiblity of cumulative toxicity in Oli's organs, and would mean another month of hospitalization. Let's all hope Jacob is totally healthy a week from now.

By the way, for those of you who've kept up with us since the beginning, you might remember that last May Jacob had to have his blood drawn several times, and each time was a MAJOR affair. We actually had to drug him each time with Versed, and the blood draws were still tear-filled, traumatic struggles.

Well, Jacob had his blood drawn last Monday and today, and he did it like a pro both times. No drugs (except for numbing cream), and only a couple of tears last week and NONE today. He actually sat there today and brushed off Robyn when she tried to distract him with a toy, and then he stared down the nurse as she prepared to poke him, and then stared down the needle as it went in. Amazing kid.

Friday, February 24, 2006 11:50 PM CST

We've been home for three nights and all is well. Oliver actually slept through the night last night - his first time in months.

Here's a sad irony: When we're here at home Oliver looks and acts healthy. He's eating and sleeping well, and playing all day long. His rashes and fevers are gone. Meanwhile the leukemia is making its steady comeback.

When he's in the hospital his leukemia is beaten back but his healthy appearance deteriorates.

Oli's doctors have made it clear to us that although he's technically in remission right now, if we don't go through with the transplant there is no question that the leukemia will come back - and soon. A remission simply means that they don't see any leukemia in the samples they have taken. (Technically, they can see leukemia and as long as it's less than 5 percent of the sample cells, it's called a remission.) The past nine months have shown that Oli's leukemia cannot be completely killed off with chemotherapy alone.

The roadmap of treatment remains the same as noted in the previous journal entry. Transplant is planned for March 7th. (Happy eighth wedding anniversary to us, I guess.)

Tuesday, February 21, 2006 2:50 PM CST

Quick note:

We're home, hopefully until Monday. The rash is completely gone as are the fevers.

Oli's tests came back negative... REMISSION! Because of these results, even the more conservative/pessimistic docs are recommending a second transplant even though chances of a cure are slim.

Oli begins radiation and conditioning chemo next Tuesday followed by a second transplant of Jacob's marrow sometime around the 8th (again, Jacob DOES NOT know this yet, so please do not mention it to him).

Thank you for all your thoughts and prayers. We'll keep you posted.

Saturday, February 18, 2006 2:50 PM CST

We didn't get to go home. Our car was loaded and our hopes were high, but Oliver woke up Friday morning with a head-to-toe rash, then developed a fever that rose as high as 104. The doctors have no idea what the rash was from, but they figure it's related to the fever, which is likely a sign of an infection. In preparation for going home, they had taken him off the IV antibiotics that he'd been on for seven weeks. It seems his system is reliant on those meds.

As of this morning (Saturday) the rash is completely gone but the fever remains and is being controlled by Tylenol. He's back on the antibiotics, and our window of opportunity for spending some time at home prior to beginning Oli's transplant regimen is narrowing.

On Friday Oliver was sedated and the doctors did the bone marrow biopsy and aspirate. Like last week, the results from this will help determine the path we take with his treatment. While he was under sedation, a pediatric dermatologist came in and took a biopsy from Oli's side to try to figure out what the rash is all about. There's a slight possiblity that he's developing GVHD (from the first transplant), but the docs say this is unlikely.

Oma Barbara heads home tomorrow after a nice two week stay with us, and Grandma Dee arrived back in town today.

Tuesday, February 14, 2006 10:01 PM CST

So, we received test results today and aren’t really breathing a sigh of relief. It appears we probably never will. The cytogenetic tests came back negative. Good, right? Well, yes, according to one of our optimistic doctors. Other oncologists on the team don’t necessarily think we have “good” news. They believe that the sample of marrow taken last week was too “empty” to determine whether or not leukemia is still there. So, Oliver will have another biopsy and aspirate on Friday this week after his marrow has had an additional week and a half of recovery.

The conflicting opinions of the doctors are really wearing us down. We have one doctor who uses words like “remission” and others who use words like “leukemia” and “blasts”. They do meet and discuss treatment. They do agree on the course of treatment. One is more optimistic than the others. The others seem more concerned with Oliver’s quality of life (be it brief or lengthy) and the chances he’ll have at ultimately beating this disease. Chances are very slim. The terms “poor prognosis” and “miracle medicine” have been used. It is our responsibility to decide (with the help of the professionals) whether Oliver should have another transplant, which could kill him outright, has a poor chance of preventing another relapse, but is his only hope for a cure, or opt to treat Oli without curing him and buy an undeterminable number of weeks or months of good quality of life. If we decide to transplant, we could be setting him up for a terrible last month of his life. If we decide not to transplant and to make the most of our last few weeks or months with him, will we always wonder if he could have been that miracle child? We hate being in the position of having to make this decision.

For now, we’re in a holding pattern until results from Friday’s biopsy.

A bright note: Oliver’s counts have started to come up and the docs are offering us a week or so at home. If Oliver avoids a fever for another 24 hours, then we could possibly go home until the 28th. A few weeks ago when the docs mentioned to us the possibility of going home between recovery and transplant, we assumed that we’d only have a day or two at home and we thought it’d be far too disruptive to both our boys to do that. Now that we’re offered a little more than a week, we’re thinking we’ll take it.

Thank you so much Laura for leaving your twin 9-month-old boys and husband in California and hanging out in the hospital with us this weekend. Thank you Erica, Rebecca, Lee, Beth, Nicokole, and Uncle Matt and all other visitors for putting your lives on hold for a few hours and hanging out with us here. Thank you ladies for all the meals. Thank you Intel folks for your generous gifts. Thank so many of you for the well used Starbucks cards. Thank you all for your encouraging notes on the website.

* Thank you all for such warm journal entries. If you don't know Oliver or his family personally, it would be very helpful to us if, when writing your message, you would let us know how you learned of Oliver's plight. There are so many of you we don't know.

Friday, February 10, 2006 6:01 PM CST

The second of three tests on Oliver's bone marrow also has proved inconclusive. This test was something called a "flow". Now we'll wait for results of the genetic testing that's currently being done. We should get those results by Tuesday at the latest.

Thursday, February 9, 2006 6:31 PM CST

The preliminary results from yeterday's bone marrow biopsy and aspirate were inconclusive, as expected. Dr. Nemacek and the pathologists will be doing two far more detailed analyses of the samples. They should be able to give us results from one of these tests tomorrow (Friday), and it might take as long as next Tuesday before we have results from the other test.

Oliver is a little uncomfortable from all the poking around in his hips and his back yesterday, but overall he continues to be his happy self.

* Thank you all for such warm journal entries. If you don't know Oliver or his family personally, it would be very helpful to us if, when writing your message, you would let us know how you learned of Oliver's plight. There are so many of you we don't know.

Monday, February 6, 2006 8:01 PM

This would be a good time for those extra prayers, thoughts, positive energy, etc. David and I learned today that Oliver will have a bone marrow biopsy and aspirate (in addition to intrathecal chemotherapy) Wednesday afternoon. The results of that test will determine the course of treatment and force us to make some of those decisions we've been forced to ponder over the last few weeks. REMISSION is what we need!

Friday, February 3, 2006 11:52 AM CST

It's Friday night and there's nothing new to report. Everything in the previous update is pretty much the same three days later.

Oliver is on many meds throughout the day and night, and his nutrition is via TPN. He has also received several blood and platelet transfusions.

His blood counts are still bottomed out and we're waiting for them to recover, and continuing to fend off infections and other potential complications.

As we've said so many times before, thank you so much for your concern with our family. We read each and every message posted, and we can feel the positive vibes being sent from all over the world.

Wednesday, February 1, 2006 1:12 AM CST

Very, very tough days here in Portland.

If you judged him by his actions, you'd say Oliver is a thriving 15 month old. He is absolutely full of energy every waking moment of the day. It's exhausting to be here in the room with him because he's constantly roaming the room, getting into supplies, getting wound up in his IV lines, wanting "up! up!" onto the window ledge, then almost immediately "down!"

His vocabulary increases by the hour. He can verbalize virtually every object in his room. "Book! Duck! Car! Blanket! Helicopter! Door! Dad! Mom! Jakey!" and on and on. Always with much enthusiasm and hand gesturing.

Robyn just completed a stretch of seven consecutive nights here in Oli's room as I was battling a cold and was not allowed on the unit for fear I'd infect Oli or one of the other unfortunate kids up here.

We're completely burned out. Much more than the hours and hours of chasing Oliver around the room, the uncertainty of Oli's health and his future are a constant weight on us. It's that "I feel like someone died" feeling, all day, all night, awake or asleep.

As the days go on we're continuing to lose our hope and even our enthusiasm, as pathetic as that might sound. We just can't deal with this long-term.

Through no fault of their own, the doctors have few concrete answers to our questions. There is little data to provide a best-course-of-treatment roadmap for Oliver's immediate future. And the data that does exist paints a grim picture.

We are being asked to make some decisions that are frankly horrifying. If that is not enough information, just think worst case.

Wow, I just read this entry. What a downer. But it's reality.

Tuesday, January 24, 2006 6:20 PM CST

Oliver's having some good days. Still, you look at him and wonder, "how can this kid be so sick?" He's generally happy. He plays most of the day. He finds it thrilling to go for a ride to various tests and procedures in his big metal crib. Yesterday, Oliver was playing in his room while David followed him with the IV pole. Oli decided to crawl under his crib and was stuck on the other side of the room. His lines were under his bed, attached to the pole on the other side of the bed. After a few minutes, he wanted his bear, "Yao Ming". So David threw Yao under the bed and Oli crawled after him. Problem solved; baby and pole were on the same side of the bed.

So, on the outside, Oli looks pretty good (except for the dramatic hair loss...it's happening so much faster this time). On the inside, however, docs are a bit puzzled. Oli had spiked a fever for the past several days. Blood and stool cultures were done. Blood grew nothing but a bacteria was found in his stool. Add another antibiotic. Now he's on Vancomycin, Dapsone, Ceftazidime, and Flagyl. He continues to have GI issues so he's on Lansoprazole. Today, he had a CT scan looking for a fungal infection. The docs are a bit worried about this possible issue, so they put Oli on Amphotericin even before looking at the CT results.

His blood counts have bottomed out from the chemo two weeks ago.

So, a little bit about the Amphotericin. Serious med. The nurses monitor Oliver very closely every 15 minutes for 1 hour then every 30 minutes for the remaining 3 hours. Yesterday, we were warned of the potential side effects of Ampho...fever and Rigors (chills). David was with Oliver last night during his first dose of this med. About three hours into the infusion, Oliver cried out in his sleep. It was a different cry, alarming to David. David went over to pat him and Oli's little body was tensing and shaking for about 3 seconds every 20 seconds or so...like seizures, David said. Nurses and docs were called. It was the Rigors. Demerol was given and seemed to solve the problem. It was a tense 20 minutes for David...a very tense few minutes for me (at home on the phone with David explaining it later in the night) but the doc and nurses were prepared and had everything under control. So, add Demerol, tylenol (pre-treat for Ampho), benedryl (pre-treat for Ampho) and hydrocordisone (pre-treat for Ampho) to Oli's daily cocktail.

Our friends Liz and Charlie from Southern California arranged for us to have a photo shoot in Oliver's room on Thursday. Laurie L. Ludes of LaurieL Photography in Vancouver, WA, spent a couple of hours with us.

* Thank you all for such warm journal entries. If you don't know Oliver or his family personally, it would be very helpful to us if, when writing your message, you would let us know how you learned of Oliver's plight. There are so many of you we don't know.

Tuesday, January 17, 2006 10:41 PM CST

A week into “relapse” and we’re OK. Amazing how a poison is actually helping my baby. When Oli’s acting OK, regardless of what all the tests reveal, we can deal. When he’s acting very sick and we know the tests' results, we have a very difficult time having hope. There have been a few days now when I've silently feared Oli would just die in my arms. It is absolutely unbelieveable that we've had to discuss our DNR "wishes" with Oliver's doctors.

A bag of reds last night and a bag of platelets this morning and Oli’s doing well now. The chemo is working so far. His CNS is clear of leukemia and his white count has been killed by the chemo; we can hope that his marrow is clear of leukemic cells as well. Today was the last dose of this round of chemo. Now we wait.

We hope Oli progresses with marrow recovery; we hope to avoid infection; we hope to get Oli into remission; we hope to get through radiation; we hope to get to transplant; and we hope for total, complete and final healing of Oli. (Thank you, April, for stating those words so clearly on Josh's website. I cannot think of a better way to put it.)

Thank you all for the notes, calls, cards, food, offers of help, prayers, positive energy, etc.

P.S. Happy birthday, Uncle Matt!

* Thank you all for such warm journal entries. If you don't know Oliver or his family personally, it would be very helpful to us if, when writing your message, you would let us know how you learned of Oliver's plight. There are so many of you we don't know.

Sunday, January 15, 2006 11:45 PM

* Thank you all for such warm journal entries. If you don't know Oliver or his family personally, it would be very helpful to us if, when writing your message, you would let us know how you learned of Oliver's plight. There are so many of you we don't know.

Yes, this is a nightmare. But things are a little better for Oli. The spinal chemo worked very fast and Oli's little brain is working again. He's been up and playing and giggling the last two days. We're told it won't last. The systemic chemo, which he's deep into already, is extremely harsh and dangerous.

We're taking this day by day. This is really terrible. We're given only very little hope. I need desperately for this cancer to go away.

Two of my girl friends spent the entire day with me yesterday. Although I cried most of the day, it was so theraputic for me. I love them for that.

Saturday, January 14, 2006 11:44 AM CST

I slept here at the hospital with Oliver Friday night. I woke up probably three times during the night, and I had the acute feeling that these days I am waking up into a nightmare, instead of from one.

It's not supposed to be this way.

Friday, January 13, 2006 21:27 AM CST

Thank you all for your kind messages and emails and calls.

We are spending much of our time at the hospital. Grandma Dee and Oma Barbara are both in town, and they even spent the night with Oli last night.

Oliver remains in good spirits. His energy is low as his blood counts have dropped precipitously. He's on about his fifth day of chemo, received a blood transfusion yesterday, and today will get an IVIG infusion.

He's saying new words everyday, and will pretty much try to repeat anything we prompt him to try.

Cute kid.

Monday, January 9, 2006 11:27 PM CST

Yes, Oliver has relapsed. We are devastated. Here's what happened:

Oliver started vomiting a week ago Friday. We were in touch with the oncologists all weekend. Monday they sent us to the ER where he was thoroughly examined. His CBC came back normal. The docs watched his meds go in and stay in then they sent us on our way saying this was a nasty virus.

Wednesday, Oli was due to have his line out. We kept the appointment knowing the docs wouldn't do the procedure because Oli was still vomiting and now listless. We stayed there many hours with the nurse practitioner and oncologist. Oli was given a bag of fluids and after seeing his counts were still OK they sent us on our way again saying this was a very nasty virus.

Friday, Oli was still vomiting and very listless...all he did was lie on me all day. Dr. N decided to admit him for IV therapy and observation.

Immediately, Oliver's urine was checked and a UTI was found. He slept the rest of the day.

Saturday morning he was nearly catatonic. That really got Dr. N's attention (by the way, Dr. N is our transplant doc). She rushed in and pinched him. He did cry but didn't give her the response she wanted. She ordered a spinal tap immediately. First guess of those results revealed Spinal Meningitis but pathology wouldn't come back for several hours. Oliver was stable so I sent David home to be with Jacob. Around 10 PM, Dr. N scared me to death by asking me to get David to the hospital as quickly as possible. She needed to speak to us. I told her I couldn't wait and needed to know. She told me the leukemia was back and in Oli's central nervous system. I can not tell you what happened next. I was completely distraught AND I had to tell Davey the news over the phone. He came in immediately. A bone marrow biopsy and first chemo was given in Oliver's spine.

Sunday was hell. Oliver was starting to show some really strange neurological signs...crossed eye, extreme agitation and pain one minute and nearly catatonic the next. The docs had been trying to manage these symptoms all day. He finally mellowed and I again sent David home to be with Jacob. Oliver woke-up at 2:30 AM thrashing and screaming in pain. The docs tried Fentenyl pump for pain, Versed to sedate him and ativan to calm him. Nothing worked. Finally the Fentenyl was increased. Oli, in his crib, crawled over to me, head down and made a couple of strange grunting sounds. It freaked me out so I call the nurse. She grabbed him, flipped him over and he was blue and completely unresponsive and limp. She called a code. I was hysterical. I was sure my baby was going to die right there in front of me. The team worked very quickly and Oli was crying within minutes. He had over-dosed on Fentenyl and had been given an anti-narcotic which pulled him back. We were moved to the PICU for the day. Oliver slept most of the day. Had a couple of episodes of inconsolable crying but we actuially saw our little Oli return for a few minutes. He played with the phone, drank milk, ate crackers and even sang the Monday Night Football song, duh duh duh duhhhhh duh duh duh duh...sweet music to our ears.

Treatment is going to be terrible. Much worse than before...extremely agressive chemo, radiation and another transplant. Oli will not be home for at least a couple of months.

This is horrible. A nightmare. We can't believe this is happening. This is worse than diagnosis in May.

Thank you all for your supportive notes and calls. It is such a comfort to read the notes.

Sunday, January 8, 2006 1:22 PM CST

We've been blindsided again. Oliver's leukemia is back. I don't know how we're going to deal with this.

Saturday, January 7 , 2006 8:00 PM CST

Oliver has viral meningitis and a urinary tract infection. He does NOT have GVHD.

Last night he had biopsies of several sections of his stomach. He was in surgery and recovery from about 9-11pm. One area was very abnormal looking (we saw the pictures) but the pathology was negative for GVHD. It might just be irritated from all the vomiting.

Overnight and today he alternated between very upset, super agitated, and long periods where he was virtually catatonic. Dr. Nemacek was very concerned to see him so "out of it" around noon today and she ordered a spinal tap to check for meningitis. Good call.

They can't really treat viral meningitis, so they will just monitor him (heart, respirations, pulse oxygen round-the-clock) to ensure other complications don't arise.

The UTI is being treated with IV antibiotics.

It's 6:30 Saturday night and we're now waiting for them to take Oli down for a CT scan of his head. They need to get a picture of the extent of the swelling and as a baseline in case things get worse over the next few days.

Friday, January 6, 2006 9:00 PM CST

It's Friday. Oliver's health hasn't improved in over a week and today Dr. Nemacek decided to admit him. So, here we are again at Doernbecher.

Tonight - any minute now, actually - we'll be heading down to surgery where they'll be sedating Oli and taking biopsies of his stomach and his duodenum. They're trying to determine if he's suffering from Graft Versus Host Disease (GVHD), a transplant side effect that is not necessarily unexpected. There are varying degrees of GVHD, from mild to very severe.

Another possible cause of his current ailment is a stubborn virus of some sort.

We are obviously not at all pleased to be back at the hospital with our little Oli suffering, but we'd rather be here this weekend, surrounded by medical professionals, than sitting at home in constant worry.

Wednesday, January 4, 2006 11:30 PM CST

Unfortunately, Oliver's hickman line remains in.

He's been vomiting several times a day, everyday, since last Friday. Although the surgical team was going to go ahead with today's surgery because Oli hadn't thrown up in 24 hours, today as we pulled into the hospital parking lot he threw up in the car.

Robyn, Oliver and I spent much of Monday in the ER under observation, then much of today (after the surgery was cancelled) with various doctors and nurses. He got a bag of IV fluids to ward off dehydration.

They continue to hope that this is some virus slowly working its way through his system. His counts look good, so nobody's talking about the worst.

Friday, December 30, 2005 8:32 PM

Hi everyone. Sorry for not posting in a while. Yes, that means things are going very well.

Oliver and I had a late Friday night ER visit two weeks ago to repair a broken central line. It was really no problem other than the fact that it was very late at night. Oliver had a great time and I wasn't terribly stressed because it wasn't a "sick" ER visit. The Doernbecher staff is just awesome and didn't make us wait with other germy kids. They sent us right into a private room with a big metal crib like the one Oli slept and played in for so long. He was thrilled.

The beginning of last week Oliver had an echocardiogram and EKG which both came back clear. Unfortunately, while waiting in the waiting room, Oli picked-up a nasty bug which resulted in croup (I know he got it there because I don't take him anywhere else and Jacob's healthy these days). Croup was really scary for me, but Oliver handled it just fine. He's no longer barking but still pretty congested. His blood counts were down a bit which the docs expected because of the virus. We actually had to have another blood check today (rather than a month from the last visit) because the docs wanted to be sure the counts were not dropping any more. Well, they are down a bit more but no one is alarmed (except me).

Good news: Oliver can get down and play outside with Jacob (not in a playground and not around other people). Unfortunately, it's been raining every day since we were told that bit.

More good news: The Hickman will be out on Wednesday! Oliver will have a minor surgical procedure done to remove the line. We'll take him home Wednesday night with a stitch or two and a bandaid and hopefully bathe him by the weekend.

Grandma Dee is here to help us celebrate the last few days of Chanukah and to finally pack-up the apartment.

Thank you all so much for continuing to read-up on Oli.

Happy New Year!

Monday, December 19, 2005 10:59 PM CST

Hi all. Oliver, Jacob and I had a very long afternoon at Doernbecher today. Oliver had an echocardiogram, EKG, blood analysis (all part of the protocol...no need to be alarmed) and visit with his new oncologist. Jacob baked and decorated cupcakes with the volunteers on the in-patient side (he made a few friends back when Oli was a "live-in").

Oliver continues to do well. There's a chance he'll have another IVIG infusion next week and his blood counts dropped a little, but the docs are not terribly concerned. Dr. T explained that the decrease in Oli's meds can make the counts fluctuate some. I asked for permission to let Oli get down and run around outside with Jake; Oli is getting a little agitated having to sit in the stroller every time we go out. The oncologists wanted to say "yes" but are checking with the transplant team just to be sure. If Oliver could run around outside a little every day we'd all be a little happier.

Happy Holidays everyone. Thank you so much for all the cards and gifts.

Thursday, December 8, 2005 7:38 PM CST

We had our big "release" meeting on Monday. Basically our formal transition from the transplant team to the oncologists at OHSU. Very good meeting. As we all know, Oli is doing great, even on paper.

Re: genetic testing: 95% Jacob's marrow, 5% Oli's...exactly what they wanted to see.

Of course, Dr. Nemecek HAD to go over ALL the future side effects AGAIN (more cancers, fertility issues, growth issues, infections...all possible). But we're thinking positively and ignoring all the statistics (FYI, when we started, Oli had about a 30% survival chance or something like that. Now he has a 70% chance of being leukemia free five years from now).

He'll have serious immunity issues for two years post-transplant (that's when we begin ALL the immunizations all over again). So...no grocery, no school, no crowds for a very long time. But, we have a cancer-free Oliver!!!

So, that's the news. Oh, forgot to mention...the Hickman central line will come out the end of January!!! Baths EVERY DAY beginning in February!

Good Night.

Saturday, December 3, 2005 10:51 PM CST

Things continue to move along smoothly.

We'll meet on Monday with Dr. Nemecek, Oliver's transplant doctor, to close out this part of Oli's treatment and to transition us to the oncology team at OHSU.

We've started to taper off Oli's twice-daily tacrolimus (anti-rejection meds), which is a 3-month process. He also has begun daily dapsone (antibiotic) meds.

We'll know more after Monday's meeting, but we think that Oli's doctor visits and blood draws will be reduced to once per month, and his bone marrow biopsies will be once per year. Also, we think they will take Oli's central line out once he is off the tacrolimus. These changes will be a huge step on our road to a normal life.

We had a great Thanksgiving weekend with lots of family in town.

Updates after Monday's meeting.

Tuesday, November 22, 2005 6:09 PM CST

**UPDATE 4:00PM: Just heard from our nurse practitioner at OHSU. Preliminary results: NO LEUKEMIA!!!!! We're still waiting for genetic test results, etc. but this is the BEST Thanksgiving news possible!

Happy Thanksgiving everyone!

Tuesday, November 22, 2005 12:09 PM CST

Nothing new this week. No results yet from last week's bone marrow check. We'll bring in a blood sample tomorrow, but won't see Oli's doctors until next week. It's possible we won't hear anything until then.

We'll have a full house for Thanksgiving. Grandma Dee and Grandpa Ben are already here, as are Aunt Janny and Cousin Naomi. On Thursday Uncles Matt and Ran arrive.


Thursday, November 17, 2005 5:09 PM CST

Hi everyone. Appologies for the infrequent updates, but typing in "Oliver continues to act like a normal 1-year old" day after day seems a bit boring.

Oliver had his 80-days-post-transplant bone marrow aspirate this morning. He was sedated for about 1/2 hour. He woke up quickly and was happy and hungry. He's home now and continues to act like a normal 1-year old.

The doctors won't have pathology results until next week, so we will continue to hold our breaths.

Dr. Nemacek said that barring any unexpected developments she's prepared to release us back to Oliver's primary oncologist in about two weeks. We'll have to decide whether we return to Emanuel hospital and Drs Norwood and Olsen or choose to stay with the team at OHSU. We can list plusses and minuses for each.

Thanks for checking in!

Thursday, November 3, 2005 10:35 PM CST

As you can see the boys had an enjoyable Halloween.

Oliver saw his doctors today (Thursday) and got another good review. His counts are good: whites - 3800, ANC - 2100, hematocrit - 30.1, and platelets - 130.

Oli's first post-transplant bone marrow biopsy and aspirate is scheduled for November 17th. This will be a tense day for us, I imagine.

Saturday, October 29, 2005 11:59 AM CDT

I set up an archive of Oliver's website pictures. You can see them by following the link in the "links" section below. Hopefully the free hosting site won't inundate you with advertising. If anyone wants a high quality file of any of the pictures just let me know and I'll send it over. The ones on the archive site are low quality and won't print well.

Our hearts are heavy as our friend Maggie passed away this week. We can't imagine the pain her family must be in.

Weds, October 26, 2005 6:31 PM CDT

Not much to report, which I consider a good thing.

I think we forgot to mention that we were able to take Oliver off the nighttime TPN (IV nutrition) a couple of weeks ago. Not only did his appetite return, but his doctors now want us to limit his formula intake as it was exceeding 40 ounces per day. They don't want him to become a "milk baby" - big and chubby but nutritionally deficient due to lack of variety in his diet.

He's spending his days walking all over the house, climbing the stairs, and wrestling with Jacob.

Our visits to the clinic have been reduced to once per week.

Friday, October 21, 2005 11:01 AM CDT

HAPPY BIRTHDAY SWEET OLIVER!!!!

Today is Oliver's 1st birthday. David, Jacob and I plan to help him celebrate by having a birthday breakfast (pancakes and eggs...Jake's request), opening presents, and after dinner tonight, we'll let Oli dive into his cake. Yippee!

Things continue to go well. Croup has left the house... Jacob is feeling much better and Oliver managed to avoid the bug. Yesterday, Oliver and I spent most of the morning at OHSU for a Pentamidine infusion (antibiotic). It was a long morning but an uneventful one.

Next on the agenda (medically) are weekly visits to the clinic for blood analysis, and flu shots for both boys around November 1st. Sometime between day 80 and 100 Oli will have his 6th bone marrow biopsy and aspirate.

Friday, October 14, 2005 10:00 PM CDT

About an hour ago Robyn and Jacob returned from the pediatrician after an unscheduled appointment. Jacob's been fighting a bad cold for a couple of days and Robyn thought he should be seen by the doctor since his breathing was becoming labored.

It was five months ago (May 19th to be exact) when we last hurried to the pediatrician for an end-of-week "he's got a bad cold and the weekend is upon us" visit. We all know what that led to.

It turns out Jacob has croup and they had to give him two shots of steroids at the office tonight. He was very unhappy for a few hours, but is now busily flying his mini Airforce One around the living room and watching the baseball game.

We are having to keep Oliver and Jacob mostly separated because Jake is contageous and if Oli catches this cold/croup our next update will be written from Oli's hospital room.



Sunday, October 9, 2005 11:50 AM CDT

Good Sunday morning.

Well, I have very little to report today. Oliver's doing GREAT! He has started eating...YEA!!! He seems to be fighting normal little viruses with no problem. He's sleeping well, taking his medicine like a champ, and walking around the house like he's been walking his entire life.

So, because life seems to be returning to normal we are giving the grandparents a break. (I know it sounds bad, but...) We're sending Grandma Dee home this week so she can spend Yom Kippur with Grandpa Ben and their friends. We've asked Oma Barbara to come for just one week at the end of the month rather than two. And, we've asked Grandma Dee to delay her next trip by a week. David starts work again in a couple of weeks and anticipates some travel. If Oli is taken off TPN and continues to be fever-free, I should be just fine. We have been so fortunate to have all this support of the Grandparents. We are so grateful. You know, I think they are happy to help us but also very happy that they can now resume normal life and worry a lot less about our little Oli.

Clinic visits continue twice a week. This week we learned that I can now take Oli to and from Jacob's preschool to drop off and pick-up Jake. Unfortunately, Oliver can't play or even get down at school, but at least he can go along for the ride. We were also told to ask all visitors to get the flu shot this year.

Have a great week, all. We'll continue to keep you posted on Oli news.

Monday, October 3, 2005 1:30 PM CDT

All is going fine so far. We've been out of the hospital for almost a week and have been to three clinic visits already. The clinic visits are just comprised of a blood draw and a quick check up with the Nurse Practitioner.

This morning Robyn and I were trained on filling blood sample vials from Oliver's line. We are now able to pull the samples before heading to the clinic, which saves time but more importantly allows us to give him his Tacrolimus earlier in the morning. He can't take that medicine until after the draw, and it must be given every 12 hours, so if we had to wait until after the clinic visit he'd be on a 10am/10pm schedule - and we don't want to have to awaken him at 10pm every night.

Oli's been sleeping all the way through the night ever since we got home. That has been so nice.

He is getting 12 hours of TPN (nutrition) every night. Robyn or I take about 20 minutes to prepare the mixture.

Oli (and we) are getting used to the ritual of administering his six daily oral medications.

Blood counts this morning (Monday) were very good. His white count is 4600, ANC is 3100, hematocrit is 32.1, and platelets are 53.

Oma Barbara left town on Saturday after two weeks here, and Grandma Dee is here now.

Wednesday, September 28, 2005 4:59 PM CDT

We made it home yesterday. As you can see in the above photo, Oliver was thrilled to be out of his hospital room and in the car.

We had a rather normal dinner - though Oli isn't eating much - then had a great night of sleep. Both boys slept all the way through the night without interruption. And Robyn and I slept in the same place for the second night in a row after five full weeks apart.

Oli's, and our, trip is far from over, but we feel like major progress has been made. We'll still be making at least two trips to OHSU per week for blood draws and check-ups. We actually had an appointment already this morning. All was good.

We came home with mass quantities of pharmaceuticals (Jacob's favorite new word) and with two $4,000 pumps for Oliver's TPN. We received training on preparing the TPN and on hooking and unhooking Oli. He will be getting 12 hours of TPN every night until he begins to eat sufficiently.

He's also on many meds:
- Tacrolimus (oral liquid twice/day) - used to prevent rejection of stem cell transplants
- Acyclovir (oral liquid twice/day) - antiviral
- Fluconazole (oral liquid once/day) - antifungal
- Lansoprazole (oral tablet once/day) - used for preventing and treating ulcers and other GI irritation

That's it for now. Thank you all for your support. Robyn and I read the visitor messages and emails everyday and they are a continued source of inspiration for us.

Tuesday, September 27, 2005 2:10 PM CDT

Hi, all. Oliver continued to improve over the weekend and it looks like we'll all be home today. His ANC is now over 1000. His five medications have been switched from IV to oral. Before he's released today he'll be getting a blood transfusion, we'll be filling his prescriptions, and we'll be packing up his room. He's been in there for 35 straight days.

Oli will still be getting IV nutrition (TPN) at night, so a nurse will be coming to the house late today to train us on how to prepare his brew and hook him up.

More soon.

Friday, September 23, 2005 12:20 PM CDT

Not much time to write as I sit here in Oliver's room after a night of interrupted sleep. He still seems to be uncomfortable, but nobody knows if it's cancer pain, teething pain, 11-month old ants-in-the-pants behavior, or my guess: stuck-in-a-hospital-room-for-four-and-a-half-weeks syndrome.

Oli's counts came in a couple of hours ago and they continue to look good. His white count is 1600 (normal is 6000-14000), up from 1200. His ANC (good, infection-fighting white cells) is up to almost 400 (500 is the magic threshold indicating he's got some ability to fight off infection). His hematocrit and platelet counts are ok, but he'll likely need continued transfusions over the next few weeks.

That's all for now.

Weds, September 21, 2005 6:20 PM CDT

Oliver is 11 months old today.

Oli's counts continue to improve and the medical staff has begun to talk about the various milestones we have to achieve before heading home.

They began to wean him from the fentanyl today. Hopefully his pain level has come down to the point where he doesn't need narcotics 24/7.

Also, starting yesterday, they began turning off his TPN (nutrition) for several hours each day. The hope is that Oli will get hungry or thirsty and begin to each or drink. He hasn't eaten in over a week.

The waiting game continues.

Sunday, September 18, 2005 6:20 PM CDT

Good news. It looks like engraftment has begun - right on schedule. Oliver's white cell count was up slightly again today, and the lab is actually able to calculate an ANC count. While his ANC of approximately 100 is for practical purposes the same as zero, it means that his body is beginning to produce infection-fighting neutrophils.

See the black line on the graph posted on the pictures page.

We and the doctors remain guardedly optimistic.

Thursday, September 15, 2005 11:00 PM CDT

Today (Thursday) is day plus13, 13 days since Oliver's transplant.

"Approximately 10 to 28 days after transplant, signs that the new bone marrow or stem cells are engrafting (growing and developing) can be expected." - Fred Hutchinson Cancer Research Center

The sign we're anxiously awaiting is an increase in Oli's white blood cell count. Every morning at 5:00 am the nurse takes a vial of blood from Oli, and about two hours later the lab sends the results up to us in his room.

On Tuesday, and again this morning, there was a very small increase in Oli's white count. The doctors told us that it's possible this is the first sign of engraftment, but it's also possible that it's just "noise" in the data. We are, afterall, talking about very, very small numbers here.

So, we continue to watch the numbers and wait - and battle the various complications that arise. Diarrhea and vomiting are still daily occurances, but seem to be decreasing in frequency. Oliver hasn't eaten anything by mouth in at least five days, so there's not much to come back up. Also, his horribly injured bottom is healing nicely.

The worst problem at this time is that Oli is having intermittent pain. He cries out suddenly both when he's awake and asleep. He is usually consolable within a couple of minutes, but it's very, very hard on us (and on him, I'm sure). He is on heavy-duty pain medication (fentanyl) several times a day. The meds are pretty effective at managing Oli's pain, and they don't make him zombie-like at all.

Our good friend Ed Smith competed in the Pacific Grove Triathlon in Monterrey last weekend. Ed raised approximately $7,000 for the Lukemia & Lymphoma Society, and he had Oliver "with him" as his honored buddy. We're honored that Ed chose to take on this feat with Oliver as his inspiration. Great job, Ed!

Our thoughts continue to be with 3-year old Maggie and her family and with 5-year old Joshua and his family. They are all going through very challenging situations right now and they are frequently on our minds.

Monday, September 12, 2005 9:00 PM CDT

Hi everyone. We're still waiting. Today is Day 10. The docs tell us we
should see signs of engraftment any day now. Waiting, waiting, waiting.

Oli's not feeling too well these days. The diarrhea continues and it's terrible for the rash (thank you, all you moms out there, for your diaper rash remedies...we're trying EVERYTHING). The rash is so painful that we've asked for morphine (for Oli, not for us) several times. It is so hard to know when Oli's in pain or nauseated or agitated or tired or just feeling bad.

The nurses here are great and are very good at helping us "read" Oli's symptoms in order to decide how to give the correct treatment.

Today (Monday) Oliver recieved his 3rd blood transfusion and 5th platelet
transfusion of the past five days. Most of us will go our entire lives without a single transfusion, and little Oliver has had EIGHT in the past FIVE DAYS.

They tell us this is normal and to be expected. In fact, they tell us everything we're seeing is normal and to be expected. The docs are very encouraging and seem to be impressed with Oli's tolerance.

On Day 2 (last Sunday) Dr. Nemecek asked Oliver if he'd received the memo that he's had a marrow transplant. Today, Dr Olson from Emanuel Hospital stopped by and jokingly asked Oli the same question.

Because Oliver is confined to his HEPA filtered room it's a constant effort for us filling the hours of his day. We watch A LOT of Baby Einstein, Bach, Shakespeare, etc, etc, etc. Oli plays a little bit in his porta-crib. He crawls and walks (did we mention that he started walking last week?) a little bit on his play rug. Other than those things, we spend a lot of time sitting, rocking, sleeping, thinking, worrying...


Thursday, September 8, 2005 3:00 PM CDT

It's hard to believe it's already been a week since Transplant Day.

Today is day 6. We're mostly playing the waiting game. Waiting for signs that Jacob's stem cells have found a new home in Oliver's bone marrow. Waiting for Oli's marrow to start doing what it's supposed to be doing - churning out new, healthy blood. And, waiting for any complications to arise.

Oliver's counts fell precipitously a few days ago (this is good and expected). Yesterday he got a blood transfusion, and today a platelet transfusion.

His appetite has dwindled to almost nothing, but he's on TPN (intravenous nutrition) so that's not a concern.

Robyn and I continue to pass each other once a day as we switch places at the bedsides of our boys.

Monday, September 5, 2005 11:43 PM CDT

Hi, Robyn here.

Things are OK here. Oliver is doing as he should...his white count has dropped to zero, he has hideous diarrhea and some vomiting, and some pain, but we still think that might be a normal pediatric thing...TEETHING!

When we're not changing diapers...which has led to HORRIBLE diaper rash..., Oli's just as happy as can be. Today he had his second REAL bath since diagnosis...thank you, Nurse Elizabeth! The only time he seems to be slowing down is when he's on the anti-nausea "cocktail" of Ativan and Benadryl.

Jacob's doing great. His recovery was a piece of cake. Funny little story: We all spent most of Friday here (OHSU) following harvest/transplant. Grandma Dee and I took Jake home in the afternoon. He had been feeling fine...no pain, just a little dopey UNTIL we reached the parking lot. Getting in the car was painful and he refused to take the tylenol w/codeine. So, I totally coddled. I carried him room to room, moved his pieces while playing Chutes & Ladders, watched The Incredibles twice and Monsters Inc. once, fed him dinner then breakfast on the couch, ran to him when he called for me in the night, etc, etc. As soon as David and I traded places and David was home with him, Jake was up and running like nothing ever happened. So funny how differently he acts with me and with David!

Anyway, the bandage came off (David said tonight, "I removed the residual butt goo from him tonight.") and Jakey has two little holes and a little bruising in his back. He's so awesome!

Now, Jacob has many things to look forward to...Grandpa Ben arrives tomorrow, BINGO here at the hospital on Wednesday, Papa Joe arrives on Sunday, and preschool starts on Monday.

We've so enjoyed ALL our visitors. Today the Renton family stopped by (the friends who gave us the O-LIVE-R bracelets). Last week Nurse Heather and Nurse Molly from Emanuel visited. Jacob and Oliver's pediatrician, Dr. Han stopped by with her daughter. Rebecca, Cory, Erica, Lee...EVERYONE, we've LOVED your visits. Thank you so much for the gifts you've brought. Now, unfortunately, we need to close Oliver's door. I'd still LOVE visitors, but we'll have to wave from the window and hang-out in the hall until Oli's counts improve.

Good night.

Saturday, September 3, 2005 00:23AM CDT

We are certainly happy to put this day behind us.

Jacob woke up Friday morning and said "I'm shivering I'm so excited!" We checked in for his surgery at 7:00 am and then had about 1 1/2 hours to kill while we waited for time in the operating room. Susan from Doernbecher's "Child Life" department spent the whole time playing with Jacob. She's the same woman who has spent much quality time with Jake over the past few weeks preparing him for this day.

Jacob was given a heavy dose of Versed and got very "drunk". Then they wheeled him away and gave him bubblegum flavored anesthesia gas. He was intubated for the 1 1/2 hour procedure.

The doctor who performed the stem cell harvest said Jacob's marrrow has a very high concentration of stem cells - one of the highest she's ever seen. Still, she had to poke his hip bones about 35 times to collect the five ounces of marrow needed for Oliver's infusion.

Jacob came out of the anesthesia fairly well. He was very out of it, but he didn't vomit at all - even after eating a huge lunch of chicken strips and fries up in Oli's room.

They gave him morphine for pain and zofran for nausea. The rest of the day and through the weekend he'll be taking tylenol/codeine for pain.

Robyn just called me from home and said that Jacob is very uncomfortable, and we obviously hope that his discomfort will abate over the next couple of days.

Jacob did a GREAT job today. He was brave and did an amazing thing. Robyn and I (and many others, for sure) are so proud of him.

About an hour after Jake's marrow was removed, it arrived in Oliver's room in a blood bag. The nurses gave Oli a few anti-rejection drugs, then hooked up the stem cells and let them freeflow into his body.

And that was it. A very, very stressful day, following a very stressful night (of little sleep), which followed three months of I-can't-believe-this-is-happening stress.

Now we wait for engraftment.

Friday, September 2, 2005 14:30 PM CDT

It's done. More soon.

Wednesday, August 31, 2005 11:59 PM CDT

Today is "day -2", two days until the transplant.

Oliver has been fairly comfortable the past couple of days. Today at 9:00 am he received his last dose of chemotherapy. I told him that I expect this to be the final dose of chemo he gets - ever.

While the nausea has mostly passed, Oli's appetite is going away, and the doctors will likely be putting him on TPN (total parenteral nutrition) soon. TPN will provide nutrition to Oli via his central line.

Grandma Dee is in town and has enjoyed some 1:1 time with Oliver in his hospital room. Oli has shown his appreciation by vomiting on her, urinating on her, and by acting like he was napping, then snatching one of his IV solution bags from its pole and emptying it on himself. (No worries, it was just saline...)

Jacob is talking a lot about his Friday procedure! Let's hope his enthusiasm last for 48 more hours.


Tuesday, August 30, 2005 2:33 PM CDT

After Oliver's tough first day on his new chemo medication, things have gotten easier on him. He is receiving several anti-nausea drugs and they seem to be doing the trick. He's eating a lot and keeping it down.

His blood counts have fallen but not to a room-confining, no-visitor level yet. He and Robyn and I spend time playing, reading, watching Baby-Mozart and roaming the halls.

Today Robyn took Jacob for a quick pre-op appointment and she decided it was time for "the talk". She told Jacob that - as we've told him before - he's got some really good blood inside him. He said "I know!" Robyn told Jake that one day soon we were going to allow Doctor Kurre to take some of Jake's good blood out of him by poking him in the back "just like with Oliver". She told him that his good blood might be able to help some sick kids get better. Jacob said, "like Oli!?" Sharp kid. He's probably been wise to our intentions for the past two months...

As a reminder, the big day - "Day Zero" - is Friday.

If you have a spare prayer or good vibe, please use it for our friend Maggie and her family.

Sunday, August 28, 2005 7:51 PM CDT

How quickly things change....

Literally 10 minutes after writing the journal entry below, Oliver woke up crying hysterically and was inconsolable. Nurse Elizabeth came in with tylenol...perhaps his teeth were hurting (we WAS biting everything). 5 minutes later the vomiting starts. Elizabeth brings in ativan. More crying...now he's hungry. David offers Oliver a bottle which he starts drinking with gusto. More vomiting. Elizabeth comes in with benedryl and pedialyte. And on, and on, and on. Oliver slept only about 30 - 60 this morning. When I left (David's with Oli tonight) Oli was trying to go to sleep...but he has to get up at 8:00 for diaper change, vital signs and oral meds. This is TERRIBLE!


Sunday, August 28, 2005 2:31 PM CDT

Hi everyone. Robyn here....and when I say "here", I mean here in the hospital. So nice that every room is equiped with a computer and fast internet.

Things are going pretty well here. The technical stuff: Oli started oral Busulfan (chemotherapy) on Wednesday and on Friday they switched him to IV because his liver is just so healthy it was metabolizing the chemo too quickly and therefore rendering the drug ineffective. Busulfan ended at midnight. At 9:00 this morning, they started Oli on IV Cytoxan (chemotherapy). This chemo will be once a day through the 31st. In addition to these chemotherapy drugs, he takes fluconazole (anti-fungal), dilantan (anti-seisure), mesna (for bladder health), zofran (anti-nausea), Zantac (tummy health), and mouth swabs (mouth sore prevention). He has his vital signs checked every 4 hours and diapers changed every hour. He's tolerating everything amazingly well.

Between various treatments, Oliver roams the halls in his new walker with his 8-year-old buddy, Austin. Oliver continues to charm everyone, making new friends every day.

Oma Barbara and Opa Paul went back to Denver today and Grandma Dee is taking over until September 11th. Jakey is thoroughly enjoying his visit with uncle Matt. It'll be hard to say "good bye" tomorrow.

David and I are, once again, like two ships passing. We see each other for "shift changes" at the hospital (we're switching places every 24 hours). We're still trying to have one of us with Jake and the other with Oli almost all the time. Perhaps when we get a little more comfortable with the routine, we'll take each other out on a date.

Thanks again for all the notes, gifts, balloons, goodies, meals, calls, etc. We can feel the love!

Thursday, August 25, 2005 19:56 AM CDT

So far, Oliver is handling his conditioning chemotherapy as well as he handled his prior three rounds. He is receiving Busulfex orally four times a day for four days, then will receive another drug (I can't remember the name right now) for four days. The expectation is that after this therapy his bone marrow will be completely wiped out and incapable of recovery on its own (as it has been able to do after the previous rounds of chemo). That, of course, is where Jacob and his super-stem cells come in. A week from tomorrow. But who's counting?

We started wearing O-LIVE-R bracelets today in a show of support. So cool. Thanks to Jill and family!

We all enjoyed a nice visit from Uncle Jay last weekend. He came out from Vermont and spent a fun few days with his nephews, sister and Mom.

Wednesday, August 24, 2005 12:46 AM CDT

Yesterday we moved Oliver into his new digs at Doernbecher. We got our friend Maggie's recently-vacated room, and there's a funny sense of comfort in that. The room is larger and more comfortable than those at Emanuel. There is room for Oli's play area rug, exer-saucer, high chair, pack-n-play, his main crib, all the medical gear, and all of us.

Robyn spent the first night with Oliver and Oli's eight-day chemo regimen began at 6:00 am this morning.

I came home with Jacob last night and can think of few times when I've been more sad. We walked in the door and as if Jacob was reading my mind he said "I wish Oli was home with us." We both lost it. When we had regained our composure he asked "Why did Oli get sick?" I lost it again, which caused him to break down again. Quite a scene. I think we both felt better after all of that and actually had quite a decent night.

Saturday, August 20, 2005 2:22 PM CDT

I guess it's been a while since we've updated everyone on what's been going on around here. Things are getting busy as we head toward the big move up the hill to Doernbecher Hospital at OHSU.

A quick point of clarification - Doernbecher is the children's hospital at the OHSU campus.

On Monday we took Jacob to Doernbecher for his last major blood draw. They needed to take TEN vials (and you might recall how much fun it was just getting one vial from him was on prior visits). We did the Versed ritual, but in true Jacob fashion he had figured out our little tricks and was on to us. He took the medicine but put up a pretty good defense just before and during the blood draw - which took at least 10 minutes and required pokes in both arms. He recoved quickly, though. Only one more tough day for him.

On Tuesday I took Oliver for his last clinic visit to Doctor Norwood at Emanuel. His blood draw showed healthy levels of hemoglobin and platelets, and a continuing plateau of his ANC (neutrophyls). Dr. Norwood said that Oli's system is setting up perfectly for the timing of the trasplant. It's just as the doctors hoped to see. Norwood shook Oliver's and my hands, wished us luck at OHSU, and said he'd see us in 100 days. (Transplant patients are released from the transplant team's care back to the oncology team's care 100 days after a successful procedure.)

At Emanuel Oliver and I got to see our friend Joshua (who is about Jacob's age) who is in-patient receiving his 14th round of chemo. He looked great and was excited to be completing his last stay at the hospital.

Thursday Robyn, Jacob, Oliver and I met with Dr. Kurre (the head of the transplant team) at OHSU. He did brief examinations of both boys, them met for about an hour with Robyn and me. He covered the procedure in detail, and discussed all the good and bad things (those lovely "outcomes" I'm so fond of) that might happen. We signed some paperwork, shook hands, and that was it.

At Doernbecher we got to see our friend Maggie. She's a 3-year old who received her transplant a few weeks ago. She was looking great and was busy walking the halls with her Mom. We look forward to learning all about what it's like living at OHSU from these folks...

Our next step is Oliver's adimittance to Doernbecher this coming Tuesday, August 23rd. He will receive high-dosage chemotherapy for eight cosecutive days beginnning on Wednesday (to completely clear his bone marrow - which is so sad, because right now the marrow is working and is showing no signs of cancer). Then, on September 1st he gets a "day of rest" post-chemo.

And then, September 2nd is Jacob's and Oliver's big day.

Reminder:Jacob doesn't know exactly what's happening on that day. Please don't discuss it with him if the opportunity arrises. Leave that to us.

Friday, August 12, 2005 10:30 PM CDT

Hello again. Robyn here.

Things continue to go pretty well here. We had a relatively busy week...Monday at OHSU for bone marrow biopsy and lumbar puncture, Tuesday at Emanuel for blood counts, and Thursday back at OHSU for sedation and contrast CT scans of the head and sinuses.

Blood counts on Tuesday revealed that Oli's recovery from round 3 of chemotherapy has slowed...a good thing; he will NOT have to have low doses of chemo to get him to transplant. We're certainly pleased about that.

Thursday's CT was interesting. We tried to get the scan without sedation but Oli was just too darn wiggly. He was given Versed and Ketamine (yes, "Special K" to you street-smart readers) and was completely blotto for about 10 minutes...which was NOT enough time. He soon began to wiggle again. Again, he's such a good patient; he was never upset, just curious. What should have taken just a few minutes turned into about an hour. The techs got the pictures they needed in the end.

After the scans, we wandered over to the clinic and informally met with our transplant coordinator, child-life therapist, dietician and a few doctors. We also bumped into the mom of a little girl we know from Emanuel. It's always nice to see a parent we know and to have that connection we can share.

Next week looks pretty busy as well: OHSU on Monday with Jacob (major blood draw - more sedation for big brother), Emanuel on Tuesday with Oliver (blood counts), Uncle Jay arrives Wednesday, and all of us go to OHSU on Thursday for complete exams of both boys and a consent conference with Dr. Kurre (head of the transplant team)....yes, I think we may have you-know-what scared out of us at that meeting.

Tuesday night we had a visit from uncle Ran...the boys were very excited to see him. When Ran left, Jacob said to David, "I wish Uncle Ran could stay forever."

Nona Damaris and Papa Joe are nearing the end of their stay...Oma Barbara arrives on Sunday. We appreciate all the grandparents so much...David and I actually had a date last night...6 hours away from children! We had a great time as did the boys and the grands.

Jake and David are doing the annual Providence Bridge Pedal bike ride on Sunday. This event raises money for the Providence Cancer Center and for the Bicycle Transportation Aliance. David will be pulling about 100 lbs of Jake and the trailor for 35 miles over the bridges of Portland.

More updates next week or if things change...

Good night.

Monday, August 8, 2005 11:16 PM CDT

Hi everyone.

Well, we had a big day at OHSU, the new hospital. David, Oli and I met with the social worker, transplant coordinator, nurse practitioner, anesthesiologist, and several nurses. Oliver had several procedures today, all in preparation for the transplant: bone marrow biopsy and aspirate, lumbar puncture, chest x-ray and many blood tests. As usual, he was a champ! He was unable to eat from 5:30 this morning until about 12:30 in the afternoon and he hardly made a fuss. Again, he made friends everywhere he went. He's such a good little patient!

This looks like a pretty busy week. Because Oliver recovered from round 3 of chemo about 2 weeks early, he has to have small doses of chemo the rest of this week and probably next to keep any possible leukemia from spreading before transplant. This will be a real pain for me and David, but probably no big deal for Oli...he will receive such a low dose of chemo that side effects should be very minimal. The three of us will have to trek to Emanuel for about an hour every morning.

Jacob has been spending his time with Nona Damaris and Papa Joe and having a wonderful time!

Thank you so much to those of you who are bringing meals. EVERY one has been such a treat...who knew Hillsboro was full of such great cooks!

More to come...

Robyn

Tuesday, Aug 2, 2005 10:44 PM CDT

Monday's visit to Emanuel went just fine. Oliver's blood work showed normal hemoglobin and platelets and still-low ANC. Dr. Olson thinks Oli's marrow is beginning to recover from the third round of chemo - right on schedule. Now it's all about timing. The transplant team at Doernbecher is planning to admit Oliver around the third week of the month, but nobody wants Oliver's system to be fully recovered for too long between now and then - this could give any latent leukemia in his body a chance to take root again. So, they will be looking at possibly giving him some lower-level chemo in the next couple of weeks to partially suppress his system. Stay tuned regarding that bit of news.

Jacob's blood draw went well, also. I administered his oral Versed and explained to him that "sometimes you just need to take medicine." He got quite bleary. The nurses poked his arm and took a vial of blood. He had a nice nap and was fine the rest of the day.

Robyn and I had an interesting/anxious few minutes sitting in the clinic waiting for Jacob's blood count results to come back, a bit of deja vu from three months ago. We're happy to report that all looked quite normal with Jacob's work up.

Sunday, July 31, 2005 10:14 PM CDT

You might notice Oliver's new hairdo. Robyn refers to this as our "preemptive strike". We'd been seeing a lot of Oli's hair on his bedding and clothes and so decided to take the upper hand. The old clippers from my high school swimming days still do the trick.

This should be an interesting week. Oliver has his regular Monday and Thursday office visits, at which time we'll get a feel for how his system is recovering from his third round of chemo. Since he bottomed out last week, we should see some recovery starting this week, possibly as early as tomorrow's blood draw.

The transplant coordinator from Doernbecher called last week and it's time for them to do a final analysis of Jacob's blood. So, Jacob and Grandma Dee will also head to Emanuel with us tomorrow for Oli's appointment. Jake's a bit skittish about the whole needles/shots/blood thing, so - as we did two months ago with his first blood draw - we'll mellow him out with a sedative and then suck his blood out when he's not looking. On the one hand it's kind of funny, but on the other it completely breaks Robyn's and my hearts to deceive Jacob.

After two months I finally got off my butt and got some exercise by heading out on a couple of 10 mile rides over the weekend. And, Robyn and I have been able to watch not one but two movies during the past few days. Is a semblance of normality returning?

Thurs, July 28 2005 11:30PM CDT

Somehow a five-hour visit to Emanuel today seemed like a reasonably short visit. We were there for a routine twice-weekly office visit, followed by a visit to the day-treatment center for a transfusion of platelets. In addition to low platelets, Oli's ANC is zero, but his hemoglobin is normal due to the transfusion he received on Monday this week.

The only immediate health issue Oliver is having to deal with is a nasty diaper rash caused by 24-hours of diarrhea on Wednesday. Appologies if that's too much info for some of you, but this rash can be a major concern for a patient in Oli's condition. There's a great fear of infection due to the broken skin and the dirty environment. We're treating it with a special ointment and watching it closely.

It's been near 100-degrees here in Hillsboro this week and we're fortunate to have a/c as we're pretty much confined to the house when we're not at the hospital.

Jake is doing great. David and Robyn are hanging in there. Grandma Dee is keeping us all sane. Friends continue to make meals. Oliver keeps on being Oliver.

Monday, July 25 2005 7:30PM CDT

Quick update tonight...we're exhausted!

David, Oliver and I saw Dr. Norwood today. As expected, Oli's counts were low (hemoglobin: 7.6, ANC: 40, and platelets were lower, but not too low...we didn't have an exact count) and he was transfused with a bag of A-POS. Again, the day was incredibly long...we left the house at 9:30 and did not return until close to 6:30. Oliver slept a total of 5 minutes all day.

Jake and Grandma had a very nice day playing and watching "A Bugs Life".

Good night all.

Sunday, July 24, 2005 10:14 PM CDT

Hi everyone. Here's a quick update for you. We really don't have much to report.

Oliver seems to be doing just fine. He's developed a little digestive issue that, so far, his docs are not too concerned about and it doesn't seem to bother him either...just a little messy for us as its presentation has been a daily vomit. He's slowly losing his rosey complexion - and his hair - but is otherwise just fine. He continues to develop on track and amaze us. His latest skill is waving "bye bye".

Tomorrow David, Oliver and I will head back to Emanuel for a check-up. Again, we expect that Oli will be pumped full of reds and platelets. We'll keep you all informed.

We're enjoying Grandma Dee's visit, as usual, and we had a wonderful time with Aunt Janny this week. We look forward to seeing Nona Damaris and Papa Joe in a couple of weeks, possibly Uncle Matt sometime in August, definately Uncle Jay, Oma Barbara and Opa Paul in August, Grandpa Ben in September and hopefully Aunt Janny again in November. We can't wait to see each of you.

Friday, July 22, 2005 10:00 AM CDT

We saw Dr. Norwood yesterday (Thursday) and learned that Oliver's counts remain in the "normal" range. Basically, the chemo from earlier in the week hasn't yet fully wiped out Oli's marrow, so he's still producing reds, neuts, and platelets. Norwood assured us, however, that the medicines administered are very powerful, and they will definitely do the trick eventually.

Oliver's counts should bottom out (hit nadir) within the next week, then remain dangerously low for 1-2 weeks, then recover.

That's the theory, anyway.

My sister (the boys' aunt) Janny is here for the week from NYC. It's always fun to catch up with each other about our increasingly adult responsibilities, and of course to reminisce.

We hope everyone out there is doing well in the world away from cancer.

Tuesday, July 19, 2005 5:00 PM CDT

Into the hospital. Out of the hospital. Into the hospital. Out of the hospital. Today we are...

Out of the hospital!

Oliver was discharged last night at about 10 pm after his final dose of chemo for this round. We got home close to 11 pm and big brother Jacob was wide awake, anxiously awaiting his brother's homecoming. It was fun to see them roll around together on Jacob's bed for a while before we put them to bed.

Oli's blood counts are expected to bottom out again very soon. Dr. Norwood expects Oli to need a blood transfusion as soon as this coming Thursday when we are at Emanuel for our next scheduled appointment.

Oliver's spirits are high and he's eating and sleeping well. For the next 2-3 weeks we again play the "keep away from germs" game.

If all goes well our next hospital stay will be at Doernbecher for the transplant. Fingers are crossed.

Sunday, July 17, 2005 6:37 PM CDT

Ouch! Updating this website on my laptop over the 28.8 Kbps dial-up connection from Oliver's hospital room...

Oli is in the process of receiving his 4th of 5 chemo doses for this week. It's been going well. Dr. Norwood (that's him, "Uncle Kevin", with Oliver in the picture) told us that Oli's CNS fluid looked good, and that his marrow biopsy was very encouraging, too. No signs of leukemia in either place.

If all continues well this week, they will let us go home late Monday or early Tuesday.

Friday, July 15, 2005 1:37 PM CDT

Thursday morning Oliver had his two procedures (spinal, bone marrow biopsy), then was admitted at Emanuel for his third round of chemo. So far, so good.

Oli will be getting two chemotherapy drugs once a day for five days. The rest of the time he's just hooked up to IV fluids.

We expect to be at Emanuel until Friday, July 22.

Robyn spent Thursday night at the hospital with him. I'll be heading in later today.

Wednesday, July 13, 2005 4:37 PM CDT

Appologies for the lack of updates. This is a good thing. Oliver has been in good health and spirits for the past several days. His bruises have cleared and his appetite is as strong as it's ever been.

Tomorrow morning (Thursday) we check in to Emanuel for Oli's biopsy, back poke, and his next round of chemo. We'll be there for about a week.

More to come.

Friday, July 8, 2005 8:37 PM CDT

Oliver had another stellar showing at his appointment on Thursday. His weight is back up to 25 lbs (he had dropped as low as 23). His blood counts continue to rise as his marrow recovers from the second round of chemo. His hemoglobin was 12 , and his platelets were 800 , so he didn't need any transfusions. His ANC is still virtually nil, but Dr. Norwood said that Oli's blood contains many cells that are precursors to neutrophils. This means that Oli's ANC should rise sharply as early as this weekend, and he will be ready for his next round of chemo next week.

The current plan is to be admitted to Emanuel on Thursday, July 14. Oliver will get a "back poke", where they check to see if the disease has spread to his central nervous system and, if it has, administer chemo to that area directly. Next, he'll get his monthly dose of pentamidine to guard against pneumonia. Then, it's on to his next five-day course of chemo.

After this next round of chemo at Emanuel we'll be off to Doernbecher for the long transplant process.

Robyn and I vacillate between just wanting to get on with it all as soon as possible, and being totally terrified and apprehensive of each next step.

Tuesday, July 5, 2005 4:30 PM CDT

We had a relaxing - albeit secluded - 4th of July weekend. Oliver did his part and stayed healthy. The rest of us visited and ate, said goodbye-for-now to Grandma Dee and hello-again to Oma Barbara.

Oliver had a checkup with Dr. Olson this morning at Emanuel. Last Friday they gave him an adult-sized bag of platelets, so not only did his bruises fade a bit over the weekend, but he also continues to have a normal platelet count (400 ) today.

Oli also got a big bag o' blood on Friday, so today his hemoglobin count was still good (11 ), too.

So, we got to turn around and come home after only an hour at the hospital. Yea.

His ANC is still essentially zero, as expected, so he's still extremely prone to infection. We will all continue to wash our hands 50 times a day and shelter the little guy as well as possible.

A note from Barbara:
I want to thank all of you, especially Robyn's and David's friends here for furnishing the Grandparent apartment so beautifully. It is very comfortable. We appreciate your generosity and caring for our family. Tonight we had a Mexican feast brought over by another friend who obviously spent hours in the kitchen this warm summer day. Thank you all. Your support is truly wonderful.
Oma Barbara

Friday, July 1, 2005 2:37 AM CDT

The above picture is of a bruised Oliver and a tired David after a long Friday at the hospital.

We are getting used to this routine. We left the house this morning at 9:30am for Oliver's 10:00am checkup, and we didn't get home until 6:00pm tonight.

As expected, Oli's platelet count was very low (under 5), but his red count was also very low (7.7), even though he had a transfusion on Monday.
His ANC (good white cells) is back down to zero, too.

Oli's checkup was done by 10:30am, but his transfusions didn't begin until about 1:30pm - the delay having to do with the logistics involved with ordering the fluids from the blood bank, having them delivered, having the blood and platelets tested and irradiated, etc.

I can't remember if I mentioned this earlier, but platelets look a lot like weak orange juice and are gravity-fed into little Oliver (meaning they go directly from the bag into his central line, rather than being metered through a pump. It only took about five minutes for the unit of platelets to go from the bag to the body.

The blood, on the other hand, is carefully pumped into Oliver over a three-hour period.

Fortunately for all of us, Oli napped for 2 1/2 hours (on Robyn's lap).

Interesting note: between the two transfusions they gave Oli a dose of a diuretic in order to "make some room" for all of these foreign fluids.

I believe Oliver has now had five blood transfusions and four platelet ones.

Because Oliver's ANC is gone, we will be laying very low during the weekend. We have fluid-loading appointments scheduled next week for both Tuesday and Thursday.

How's that for fun-filled summer plans?

----------------------------------------

Grandma Dee here, in a different vein, no pun intended:

I would like to thank Robyn's girlfriends, who gave so generously to furnish the "Grandparents' Apartment." You brought dishes, silverware, glasses, pots and pans, spatulas and knives, sheets and pillows, soft towels, comforters and quilts, Tupperware and pyrex dishes. And then there were all the little extras, including a blender, a chopper, a laundry basket, measuring cups and a cruet, Starbucks coffee mugs, kitchen soap, scrub pads, and a box of candy!

Every time I've used these things during the past week I've silently thanked each of you. We know your generosity is a tribute to your love for Robyn, David, Jacob, and Oliver!

Thursday, June 30, 2005 1:20 AM CDT

That main page picture is my Dad, Ben, with Oliver. They walked the neighborhood a few days ago.

One disconcerting development in Oliver's health is pervasive bruising all over his body. His platelet count is very low, so his blood isn't able to clot. Couple this with Oli's constant activity - crawling, standing, rolling, FALLING. He's got a big bruise on his cheek, several on his forehead, many on his legs.

We will be at Emanuel Friday morning for a checkup and definitely for a platelet transfusion.

(part II) Monday, June 27, 2005 11:20 PM CDT

As planned, we spent all day at the hospital. Oliver's hemoglobin (reds) was 7.9 -- normal is 11 -- so he had a unit (120 ml) of A- transfused over the course of three hours. It was a long day, but we're all home now, Oliver is stretching his legs in the living room before he goes to bed, and Robyn and I are decompressing with a glass of vino.

Next appointment is Friday morning. He'll need a platelet transfusion then.

Monday, June 27, 2005 7:20 AM CDT

Monday morning and I'm up early with my boys. We're all still home and there have been no signs of infections or other major complications since Oliver's second round of chemo ended last Wednesday.

Over the weekend we noticed Oli getting a bit slower physically, and also he's more pale and showing more bruises. As expected, his counts are surely going down and he's showing the signs of reduced red cells and platelets.

We will be at Emanuel Hospital today for a scheduled appointment. We expect him to be given both blood and platelet transfusions. It's going to be a long day, as the appointment isn't until 1:30, and the blood transfusions take several hours.

On Saturday Jacob, Grandma Dee, Grandpa Ben and I went out to Hillsboro Stadium and cheered on Laura Dahill in the Relay For Life. She was personally sponsored for over $500, and the event raised over $20,000 for the American Cancer Society!

Grandpa heads home to Denver today, while Grandma Dee will stick around until the next changing-of-the-guard with Oma Barbara next Monday.

Thursday, June 23, 2005 10:30 PM CDT

Hi everyone. Well, we're still at home. Oli's doing great...very normal 8-month-old things like crawling, pulling up and teething (ouch!). He is such a different kid than Jacob. He has the same sweet, sunny disposition but he is so busy! He's into EVERYTHING! We've had to do some serious baby-proofing in the last 24 hours.

So many of you have been so helpful and supportive. Thank you so much for all the meals (you know who you are), items for the grandparent apartment, care-packages, calls, emails, prayers, positive vibes, etc. I'd like extend a very special Thank You to Ms. Sherry (Jakey's teacher) and her daughter Stephanie for waiting in line at 4 in the morning to ensure a spot for Jakey in preschool next year. Jakey, David and I can't thank you enough... registering for preschool would have been near impossible while Oli was in the hospital. Your generosity is above and beyond!

Good night.

Wednesday, June 22, 2005 2:37 AM CDT

Today is day #30 since Oliver's leukemia diagnosis, and last night was our 21st in the hospital. Unbelievable.

Oliver came home this afternoon after completing his second round of chemo at Emanuel. So far he's handled this 5-day course of treatment very well. He continues to eat, play, sleep, etc. quite normally, even at the hospital.

The doctors expect the latest round of chemo to catch up with little Oli next week some time. As his reds, whites, and platelets are lost through normal attrition, his marrow will fail to keep up, and his counts will go down. Not only will he feel bad, he'll also need transfusions of reds and platelets, and his low ANC will make him susceptible to infection again.

For now, we're planning to make the most of our time together, at home.

Grandma Dee and Grandpa Ben are here this week helping keep things under control.

Sunday, June 19, 2005 9:23 PM CDT

Happy Father's Day. It's been an interesting one for me. I spent last night and this morning with Oliver at the hospital, then came home and am in the process of playing with and having dinner with Jake.

Oma Barbara flew home today and Grandma Dee is here with us now. As I've said before, we couldn't be doing this without the two of them.

Oliver is doing well in his second day of his second round of chemo. The regimen this time has him receiving 30 ml of cyterabine (also known as ARA-C) in a 1-hour dose every 12 hours for 5 days. So, for five days at 5:30 pm and at 5:30 am he gets the drug. He also receives eye drops every four hours to prevent conjunctivitis and zofran every four hours to keep nausea at bay.

The precautions necessary when dealing with these chemotherapy drugs is amazing: when we change Oli's diaper we have to wear speacial "chemo-gloves" due to the residual drugs in his urine. He's on IV fluids 24/7, so he pees a lot, and when his clothes get wet, we have to take them home in special bags and they must be washed separately twice. When the nurses hook up the meds they wear gloves, gowns, and goggles - and pregnant nurses aren't allowed to work with us at all. I guess my point/question is: how in the world is it OK to inject this stuff into a person's vein?

We're in a different room at Emanuel this week, over on the infant side. It's not one of their two special HEPA filtered rooms, but there's a portable unit in there. Because of Oli's diminished immune system, they won't put another patient in there with us even though it's a two-person room. This has allowed us to spread out and make the room almost homey. Pictures to follow.

Robyn's with Oli now, and I'm off to dinner.

Friday, June 17, 2005 1:23 PM CDT

I wouldn't wish this emotional rollercoaster on an enemy.

Doctor Norwood called an hour ago to tell us that Oliver's Wednesday marrow biopsy contained leukemia cells.

We're heading to Emanuel in an hour and Oli's second round of chemo starts today.

Thursday, June 16, 2005 10:23 PM CDT
David here...

A milestone this morning: since nobody has actually told Oliver that he's deathly ill he just keeps on developing as an infant should. I was up with the boys early this morning, and while making breakfast I looked into the family room and discovered Oliver standing at the toy box, arms buried deep, looking for some sort of treasure. First time he's pulled up!

I think many of us got a bit ahead of ourselves after yesterday's series of positive messages from the doctors at Emanuel. Today's meeting at Doernbecher Children's Hospital at Oregon Health Sciences University (OHSU) with the transplant team quickly reminded Robyn and me of the severity of Oliver's plight.

For those of you who haven't been to OHSU, it's really quite spectacular. The impression it left on me architecturally was of a huge space station, all its separate components built by a different country so no two parts really seem to have been built with the others in mind, all connected by a maze of elevated pedestrian walkways. This strange mess of buildings was then dropped into the wooded hills southwest of downtown Portland. I digress.

First we (R, O and I) spent a half hour with an RN who is the Transplant Coordinator. She gave us a tour of the oncology floor of the children's hospital and gave a rough timeline we could expect once Oliver comes to them for the transplant. Our next half hour was with a social worker. We then spent a full hour with Dr. Peter Kurre (say "Curry"), the head of the transplant team.

Dr. Kurre went into great detail explaining Oliver's current therapy (pretty much what we've heard from the docs at Emanuel), how his treatment at Emanuel will mesh with his treatment at OHSU (very finely - Dr. Olson attends weekly meetings at OHSU with Dr. Kurre), what Jacob's role will entail (one day, a couple of hundred pokes into the hips, quick recovery), how long Oliver will be in-patient (up to seven weeks), the long-term effects the transplant will have on Oliver (some merely bothersome, some devastating), and the many potential complications that can arise at any stage of the process (almost all leading to "outcomes" that are not "favorable"). Doctor vernacular.

Although his hair has begun to come out, you can see from the new pictures that he still looks strong and healthy. He has so much energy and has become so adept at crawling that we have to continually corral him.

Good night.

Wednesday, June 15, 2005 2:56 PM CDT

Hi, all. We spent several hours at Emanuel Hospital this morning (Weds) for Oliver's bone marrow biopsy.

Before he began the procedure, Dr. Norwood told us that upon further examination by a pathologist Oli's blood is not showing any blasts - which is a good thing. Given this information, Norwood only took one biopsy today.

When we got to the Day Treatment Center nurse Mona took a couple of vials of blood for labs, then we went to the procedure room. Dr. Lindsay (the intensivist who administered Oli's anesthesia) put him under while Robyn and I made our traditional coffee run.

Intensivist is today's vocabulary word: A physician who specializes in the care of critically ill patients, usually in an intensive care unit (ICU).

Oliver came through the procedure just fine, and a little oxygen and eight ounces of formula brought him back to full conciousness.

The labs came back and, as hoped, his marrow is making a solid recovery from the first round of chemo. He is generating red cells and platelets at a rate that keeps him from needing transfusions, and his ANC is up to 220.

Here's what the future holds: if the marrow biopsy results come back this Friday showing nothing unusual, we can expect the second round of chemo to begin a week from today. If the marrow shows the presence of leukemia, Oli will start the second round over the weekend or no later than Monday. And all of this, of course, presumes that he doesn't catch a bug of any kind between now and then. Dr. Norwood saw what might be the start of an ear infection that could land us in the hospital if it develops further.

Jacob continues to enjoy spending much of his time with his Oma Barbara. Oma is nearing the end of her "shift" and will be returning to Denver on Sunday, switching places with Grandma Dee.

We received an overwhelmingly generous gift from my friends and coworkers at Intel. While eventually I intend to thank each of you in a more personal fashion, I wanted to make sure you all know how touched Robyn and I have been by your outpouring of support. Not just the tangible gifts, but also the many, many kind emails and phone calls we've received.

DT

Monday, June 13, 2005 5:48 PM CDT

It's Monday afternoon and we're just back from seeing Dr. Norwood. After drawing and analyzing Oliver's blood the doctor said Oli's counts look decent - his hemoglobin was good (10+), meaning he didn't need a transfusion, and his platelets were acceptable (40K+, as I recall), so he didn't need a bag of those. His ANC is around 120, which is an improvement over the 0 he came home with on Friday, but still in the extremely-low range.

The thing that continues to trouble the doctors is that they're still seeing some blasts in his blood. As I understand it these are potentially pre-leukemic cells. The docs will be looking further into this. The concern is that although they saw no leukemia in Oli's marrow last week, it's possible that they simply had a "lucky" biopsy in an area that didn't have any bad cells, while in marrow elsewhere in his body he's churning out more leukemia.

They will be performing one or two marrow biopsies on Wednesday this week, and what they learn then along with further analysis of today's blood will determine their course of action. If the results point to leukemia that survived the first round of chemo, they will likely choose to begin round two immediately in spite of Oli's low ANC. IF the results are less conclusive then they will wait a couple more weeks until Oli's ANC climbs above 500.

For now, we're all home.

Sunday, June 12, 2005 7:02 PM CDT

We came home Friday night and so far so good. Oliver is happy and appears healthly. We've managed to shield him from the "bugs" so far.

Monday morning Oli has a check-up with the doctors, and Wednesday he has another bone marrow aspirate and biopsy.

The moods of the entire family are higher than they've been for a few weeks.

More news as it develops.

Friday, June 10, 2005 5:41 PM CDT

It's Friday midday. Dr. Olson discussed the bone marrow results with me a couple of hours ago. Again, good and not-so-good news. The good is that they found no leukemia in the marrow. The not-so-good is that they also found no sign that his marrow is producing infection-fighting white blood cells on its own. The hope is that the chemo wipes out all the cancer but allows the remaining marrow to boost Oli's white count between treatments. Dr. Olson also found some leukemia cells still traveling around Oliver's blood, but she said these might just be stragglers that will die off on their own. We'll know more after his next bone marrow biopsy next Wednesday.

We are being allowed to go home tonight. Oli's fevers and digestive problems are gone, and he's eating fairly well. The big concern - as it was a week ago when we first went home - is his inability to fight infection due to his lack of white cells. This may turn out to be a very short stay at home (but better than no stay at home, right?).

Here's a little hematology lesson for those who are interested. When reading this bear in mind that Oliver's ANC is 0 (zero).

"Definition: Absolute Neutrophil Count (ANC) will often appear on the blood test report of a person receiving chemotherapy. It refers to the percentage of neutrophils (white blood cells that fight infection) and cells that will become neutrophils multiplied by the white blood count (WBC). The significance of the ANC is as follows:

ANC below 2000 is considered to be neutropenia (the presence of abnormally small numbers of neutrophils in the blood)

ANC between 1000-1500 fairly low risk of infection. Chemotherapy will usually be given in this range, but not below it.

ANC between 500-1000 - moderate risk of infection

ANC below 500 - severe neutropenia - high risk of infection"

Wednesday, June 8, 2005 7:03 PM CDT

By my calculation Oliver has been in the hospital 16 of the past 17 days. But, who's counting? Pretty mind-boggling considering less than three weeks ago Robyn took him to the doctor because of a runny nose. On that topic, I definitely don't want all fellow young parents out there to panic when their kids get a cold! Oli's cold almost certainly had nothing to do with his leukemia. His cold is what brought us to the pediatrician, and it was the ped's thorough examination of Oliver that led to further testing and diagnosis. We've been told that had we not taken him in that day, more conventional symptoms of the leukemia would have presented themselves within days.

This morning (Weds) Oliver had a bone marrow aspirate and biopsy to assess the effectiveness of the first round of chemo. At 9:30 am they put him under general anesthesia by administering meds through his central line. During the 20-minute procedure Robyn and I paced nervously in the hallway outside the room.

Actually, that last part is a lie. In truth, we went downstairs to the cafe and got a cup of coffee and a cinnamon roll. As most of you can imagine, however, with our son in a medically induced state of unconciousness and having large-bore needles pushed into his hips for the purpose of assessing his ability to survive a life-threatening illness, for all we knew could have been drinking pond water and eating wood chips, and there wasn't a whole lot of happy conversation going on.

He awoke from the procedure ravenous. I've spent the day here at the hospital with him, and he's been in comparatively good spirits. He's been eating, sleeping and playing most of the day.

Dr. Olson (the director of the 3-doctor oncology group) gave me what she called "not good news or bad news". The aspirate showed no obvious signs of leukemia cells, but also showed no signs of "good" white cells. They will be able to tell us more in about two days after a pathologist examines the marrow after it's been de-calcified.

Dr. Olson said she thinks we might get to go home this coming weekend...

On a fun note, my buddy Ed (the triathlon guy) is in town (from Folsom, CA) tonight and tomorrow, and he, Jacob and I are going out for pizza and beer. And juice.

Tuesday, June 7, 2005 1:22 AM CDT

WARNING: THE FOLLOWING JOURNAL ENTRY IS NOT A HAPPY UP-LIFTING MESSAGE. SORRY.

Oh My God. My baby has leukemia. MY baby has cancer?!? Last week when we left the hospital we were devastated by the diagnosis yet hopeful that Oli would be OK because they sent us home on Thursday. Oliver was happy, chubby, chatty and a little tired. Everything changed in about 12 hours. So, this is cancer.

Friday, Oliver developed a low-grade fever and was a little fussy. Terrified, David and I called the docs 3 times. Each time, they said this is to be expected, watch for a temp greater than 101, watch for lethargy. Saturday morning, worse. Now, he's crying A LOT and pretty hot. Time to go to the hospital.

At Emanuel, temp was 102, Oli was defiantely lethargic and pretty miserable. David and I were terrified. ALL the docs and nurses were very sympathetic but not terribly concerned. This is cancer. This is what chemo does. This is the beginning of a very long miserable journey for ALL of us.

Oli's just had his worse three day of his life. He cries. He barely eats. Sometimes he sleeps for unbelieveable amounts of time and other times his wired and can't sleep. He has unbelieveable GI issues. He appears to be in some pain, but of course he can't tell us. He's miserable. David and I are miserable, terrified, helpless. Again, the docs are not alarmed. They are hydrating him and treating his symptoms...trying to make him comfortable. He'll be at Emanuel until at least Wednesday. Wednesday, he'll have is 2nd marrow aspirate to check the chemo progress. If the docs don't like what they see, round 2 begins immediately... another 8 days at Emanuel. If the docs see some progress from round 1, HOPEFULLY we can take him home for a week or so, assuming he doesn't catch another bug.

What is today, Monday? I've been at the hospital since Saturday. David's there now. I'm home with Jake and Oma Barbara (we said goodbye to Grandma Dee today and Papa Joe yesterday).

Thanks for all the thoughts, prayers, positive energy, cards, packages, meals, etc.

Good night. More positive messages to follow...I'm sure!

Saturday, June 4, 2005 5:03 PM CDT

We're back in the hospital. In the same room.

Thursday night went well at home, but ever since yesterday morning Oliver has been unwell and not himself. This morning when his temperature hit 100+ the doctors told us to come in. When we got here his temp was 102, so they started him on antibiotics and fluids and told us to plan on staying until at least Wednesday. I guess this is our new way of life.

On a positive note, each doctor we've seen has expressed extreme happiness over the matched-donor news from yesterday. They say it was the buzz around here all day yesterday.

Grandma Dee continues to be our hero - seeing to Jacob's every need, making meals, doing dishes, cleaning, etc. It looks like she'll be heading home to Denver on Monday, just in time for Oma Barbara to arrive in Portland for two weeks. Papa Joe arrived in town last night and will stay through the weekend. It's sure nice to have a bunch of supportive grandparents - including those who haven't yet been here but have promised to come at a moment's notice.

More later.

Saturday, June 4, 2005 5:03 PM CDT

We're back in the hospital. In the same room.

Thursday night went well at home, but ever since yesterday morning Oliver has been unwell and not himself. This morning when his temperature hit 100+ the doctors told us to come in. When we got here his temp was 102, so they started him on antibiotics and fluids and told us to plan on staying until at least Wednesday. I guess this is our new way of life.

On a positive note, each doctor we've seen has expressed extreme happiness over the matched-donor news from yesterday. They say it was the buzz around here all day yesterday.

Grandma Dee continues to be our hero - seeing to Jacob's every need, making meals, doing dishes, cleaning, etc. It looks like she'll be heading home to Denver on Monday, just in time for Oma Barbara to arrive in Portland for two weeks. Papa Joe arrived in town last night and will stay through the weekend. It's sure nice to have a bunch of supportive grandparents - including those who haven't yet been here but have promised to come at a moment's notice.

More later.

Friday, June 3, 2005 5:34 PM CDT

Besides the unlikely scenario of the doctors telling us they were wrong and this is all just a big misunderstanding, we got the best possible news today: preliminary results from our blood tests show that Jacob is a matched donor! If these results hold true it means Oliver/Jacob will definitely be heading down the marrow transplant route in the next few months.

One note: PLEASE do not talk to Jake about this. Robyn and I will find the right time and the right way to do this. The transplant process is going to be difficult on Jacob and we want to make it as smooth as practical.

This morning, Oli's first back at home, he did his first serious crawling. He made it across the living room, from Mom to Grandma, back to Mom. Apparently, nobody told him he was sick.

Oliver slept a full 12 hours last night, and just awoke from a 3-hour nap. He's a bit lethargic but happy.

My good friend Ed Smith called today and said that he will be competing in a triathlon in Monterey, CA, in September. The focus of the event is to raise money for leukemia research, and Ed asked if Oliver could be his personal leukemia partner. Speaking for Oli, I said, "of course".

Friday, June 3, 2005 0:26 AM CDT

New pictures added.

Oliver is home. His blood counts and overall health enable him to (hopefully) spend the next three weeks at home living normally. We will be keeping a hyper-sensitive eye on him for any signs of illness. He has a checkup on Monday, and a bone marrow biopsy on Wednesday. Depending on the results of the Wednesday biopsy, he will either begin his second round of chemo that day, or if the results are more favorable he will begin round two in three weeks.

My Mom, Robyn, Jake, Oliver and I had a fairly normal dinner and bedtime routine tonight. Oliver is asleep right now in the crib that he hasn't slept in the past 10 nights.

No news yet regarding a marrow match.

We owe a huge thank you to Western Carpet Cleaners of Portland. To disinfect the house for Oliver's homecoming we wanted to get the carpets steam cleaned. When we called this company two days ago they couldn't fit us in their schedule. Robyn briefly explained our situation to them and today the brother of the company's owner came out and did a great job - on his wedding anniversary - and wore gloves and a mask per our request. Of course the company got paid, but they truly went above and beyond for us.

When I was putting Jacob to bed just now he said:
"I love Mommy the best!"
"I also love you the best!"
"And I love Oliver the best. And I don't want him to die. And I don't want to die either." (FYI, we have NOT discussed the gravity of Oli's illness with Jake.)

This whole thing really sucks for all of us, but it is just so unfair that Oliver and Jacob have to go through it.

Sorry for the downer.

Hi. It's Robyn. Glad to be home and terrified that we'll have to visit the ER sometime in the next three weeks. As you can see, Oli still looks just as cute and chubby as ever.

I'm having trouble reaching out to some of my good friends and family right now. I don't really know what will happen when I hear your voices, so I'm hessitant. Please know that I read your emails and message postings, I get your phone messages, and it all means a tremendous amount to me.

Thursday, June 2, 2005 0:32 AM CDT

Oliver has completed his first round of chemotherapy.

That's a sentence that two weeks ago would never have even occurred to me, much less come out of my mouth.

It's amusing to look back two weeks and think about the things I thought were important. They are all a distant second now.

Dee, Jacob, Robyn, Oliver and I spent the day at the hospital. Oli continues to have good spirits and handsome looks. I talked for a long time with his other doctor, Dr. Chu. If all continues well through tonight (Weds) she is comfortable releasing him Thursday midday.

If all goes perfectly, Oliver will stay home for three weeks before returning to Emanuel Hospital for another 8-day chemo round.

A chemo patient's biggest threat is that of infection. The body's ability to fight one is essentially gone. We have been told:
A) to watch very carefully for any signs of infection
B) if the signs point to infection to get Oliver to the hospital immediately, most likely via EMS/911
C) to expect this to happen at least a couple of times and to accept it as part of the whole "chemo-trip" we're on (I just made up that term...)

Robyn and I spent a long time meeting with the oncology practice's case worker today. She went through a thick binder of paperwork and explained the details involved with Oliver's home care. For the next three weeks Oliver should be able to live the relatively normal daily life of a 7-month old at home. There will, of course, be a few abnormal things going on: oral meds (for nausea, for platelet health, etc); mouth swabing several times a day (chemo causes terrible mouth sores); eye drops several times a day (chemo causes terrible conjuctivitis); Hickman line flush daily (Robyn and I will do this to prevent clotting in the line).

Robyn is with Oli at the hospital tonight.

One more thought: everyday as I approach the entrance to the hospital, on my way to visit my son who has cancer, I'm truly stunned by the throng of people huddled under a shelter, sucking away on their cigarettes. Some of them are tethered to IV poles. I feel like taking them by the arms and leading them upstairs to the oncology ward and asking "What the f*ck are you doing?"

No offense.

Wednesday, June 1, 2005 12:46 AM CDT

Hi everyone. I am touched, overwhelmed, amazed, etc by all of the notes you have posted and packages you have sent. I visit the computer room ("Starlight Lounge") a couple of times a day and am so comforted by each of the messages.

David spent the night with Oli last night and this morning I woke-up with the teddy bear, blanket and 4-year-old on my pillow.

Today is the last day of chemo - round 1. Oli is just beginning to show side-effects of chemo. I don't really know how to describe what I'm feeling. Last week, I brought a "healthy", fat, pink, happy 7-month-old in to have his ear checked. Lab results revealed some very bad stuff. So, we're pouring some very, very bad stuff into MY BABY. And now he's not quite so pink, pretty bruised-up all over (head bonks on the crib, etc....low platelets cause coagulation problems which cause more bleeding which lead to the distressing-looking bruises), mouth sores, vomiting some and showing some other unpleasant GI issues. He's still fat and happy. His appetite is holding, so far. Dr. N continues to be very pleased with results and we're hoping to go home Friday. Round 2 will begin sometime around June 29 (I think). We'll move back in to Emanuel for at least a week at that time. We hope to have donor results by the end of next week.

Jake, Grandma Dee and I are heading to the hospital now for the day. Emanuel is so wonderfully exciting for someone Jake's age. He really enjoys "playing" there and he's finally getting comfortable with Oli's tubes and other strange things. Monday was the first day in a week that Jake actually hugged, kissed, talked to and played with Oli. It brought me to tears.

Speaking of tears, David and are crying less and less. I'm down to about 2 or 3 mini-break-downs a day. There are a few people (like Dr. T and Dr. H...Oli's primary physicians who we are absolutely in love with) who can reduce me to tears just by looking at me.

OK. Off to the hospital. Thanks for listening. Thanks for the journal comments...please keep them coming. You are such a comfort.

Love, Robyn

Tuesday, May 31, 2005 7:16 PM CDT

New pictures have been posted. Click the link on this page.

I wrote another, longer, more interesting entry earlier. Check out the "prior journal entries" or whatever the link is called.

DHT

Tuesday, May 31, 2005 2:10 PM CDT

It's Tuesday. Robyn spent last night with Oliver at Emanuel and they both got a decent night of sleep. I spent the night at home and woke up this morning with a teddy bear, a blanket and a 4-year old in bed with me.

Jacob is at school this morning, then going to a friend's house for a few hours. My Mom and I are in the process of cleaning the house from top to bottom in preparation for Oliver's return home.

Dr. Norwood is hoping to release Oliver on Thursday this week.

Oliver still looks and acts like there's nothing wrong in his life (though we've been forewarned that this will not last - the chemo that has been successfully wiping out the cancer will soon take its toll on the rest of his body).

More pictures coming soon.

DHT

Monday, May 30, 2005 12:37 AM CDT

It's David here in the small computer lab on the pediatric unit of the hospital. They have a couple of PCs, some computer gaming machines, and a big screen TV with theater seating, all to make the kids and their families a bit more comfortable. They also have a full kitchen for "cooking therapy". Pretty cool.

No real news regarding Oli's health. He continues to receive 24-hour a day chemo, plus various other oral and IV meds at various intervals throughout the day and night. He's eating well, and his sleep schedule has remained almost normal. He frequently sleeps right through the procedures during the night.

Yesterday (Sunday) Robyn, Jacob and I got to spend some family time at home while Oliver was looked after by his Grandmas. Jake and I watched the Indy 500, which was a nice 3-hour diversion, and we also watched some of the NASCAR race (sorry, Uncle Matt). We also all took a much-needed nap.

I spent the night at the hospital last night while Robyn, Jacob and Grandma Dee got a nice, long night of sleep at home.

A week ago it was sunny and 90 degrees here in Portland and my spirits were never lower. Today the weather is a more typical overcast and gloomy, but I'm feeling a tiny bit better inside.

I hope Uncle Matt is having a terrific time in Mexico right now, and Aunt Janny, Uncle Ran and Cousin Naomi are enjoying Toronto. Have a great holiday weekend!

Sunday, May 29, 2005 1:26 AM CDT

Five days down and many more to go.

Oliver continues to hang in there and act like the happy, seemingly-healthy baby we all know. Today he was a bit fussy and tired most of the day. Maybe the long days of poking and prodding and IV therapy are getting to him. Then, again, maybe he's just being a 7-month old.

Doctor Norwood remains optimistic about Oliver's progress so far.

I've posted a few pictures on this site. You can see them by clicking the link on this page. It seems the system will only allow three pictures at a time, so we'll try to update them periodically.

Thanks to everyone out there who continues to send their support our way. It means a lot to Robyn and me.

Friday, May 27, 2005 8:08 PM CDT

FYI - the reputable website the med staff refers people interested in information about cancer is: www.curesearch.org.

Things are going well so far. Dr. Norwood is very pleased with Oliver's rapidly shrinking spleen. This is a sign that all those bad cells that have been getting absorbed by this organ are rapidly being killed off.

Jacob, Robyn and I each had four vials of blood drawn today in order to check for a donor match. If any of you has an extra prayer (or "positive energy" as a lot of you non-prayers like to say) make it that one of us - and to be even more specific, Jacob - is a positive match. Thank you.

Oliver continues on round-the-clock chemotherapy. He's already used to the mainline they implanted yesterday. The mainline (Hickman) is a catheter in a major blood vessel up by his collarbone. He has a short length of tubing that extends from just near his right armpit, and almost all meds and all blood draws can come/go from this line. His hands, arms and legs are free so he can move around fairly normally.

Guest Book entries are a comfort. Keep them coming.

Thursday, May 26, 2005 6:51 PM CDT

for those of you who have not heard the details...

A week ago today, I took Oli in to see his doc because I was worried he was developing an ear infection. At that appointment, Dr. Tomkuria found that Oli's spleen was enlarged. She took some blood, and Jake, Oli and I waited...for about 2 hours (yes, Jake had a hard time waiting!). When Dr. T called us in, she said that Oliver was anemic and had a very low platelet count. She was not terribly concerned. She sent us home for the weekend assuming Oliver was fighting a very bad virus, and asked that we return Monday morning.

9:00 am Monday Dr. T found that Oliver's spleen was even larger and his liver was growing as well. More blood taken. Lower numbers for all blood (hemoglobin, platelets, and WBCs...for those of you who are medically minded...WBCs 10.5, Hemoglobin 6.2, platelets 43,000, ANC 0). She sent us to Legacy Emanuel to see Dr. Norwood, pediatric oncologist/hemotologist.

There, Dr. N suggested admitting O to have a transfusion and marrow aspirate. At this point, he had narrowed a likely diagnosis to aplastic anemia or (less likely) leukemia.

So, David, Oliver and I checked in, had all the work done, and waited. Tuesday morning, Dr. N entered the room with the staff MSW...a sign of something terrible. Leukemia definately. AML or ALL still undecided, waiting for confirmation by pathologist. AML M-5 was confirmed Wednesday morning.

That's how it happened. We are devastated and terrified (prognosis is somewhere around 40%).

So it begins....last night around 5pm, Oliver was under general to have a Hickman central line placed and to have the first medication through a lumbar puncture. Chemo began last night at 8pm and will last at least 7 days straight. If labs look OK we may get to go home. We could be in the hospital for up to a month. Bone marrow transplant is likely...if we have a family match (has to be either David, Jacob or myself). More chemo. This is likely a 12 month process.

You just would not believe this kid is sick! For those of you who have met Oliver, he's just as fat, rosey and happy as ever. He continues to play, crawl, giggle, and "talk". He's having a great time. We are not. David and I have had many weeping sessions...they just keep coming. Jacob is doing OK. He doesn't understand why Oli isn't home. He misses us (either David or I has been sleeping at the hospital with Oli since day 1...David's mom, Dee is in town helping with Jacob). Jacob will come to the hospital again tomorrow for a visit. Oli will be thrilled!

OK. That was somewhat theraputic. Thanks for your concern. Keep checking for journal entries. For those of you who are local, thank you so much for all your supportive offers. I'm not quite ready for visitors...perhaps next week.

Love, Robyn

Thursday, May 26, 2005 2:03 PM CDT

I (David) just created this page, but am now hurrying off to the hospital to be with Oliver and Robyn. Please check back soon.for additional updates.

Click here to go back to the main page.

----End of History----