About a year ago, we were shopping for a white suit for our little Tobin. It was a painfully morose thing: we were looking for something to bury him in. He’d not yet passed, but every day was more difficult and it was clearly imminent. It’s the sort of thing that is made markedly easier by doing it beforehand, although you’d rather not do it at all.

If you’ve lived in Utah (or Provo, in particular), you know there is no shortage of “white clothing” stores, selling white suits, dresses, veils, tuxedos, belts, shoes, or anything else you could ever want to wear that is white. Except no one seemed to have anything sized for a three-year-old.

We visited three or four specialty stores and the LDS distribution center; the only thing we found was a white jumpsuit. On a whim, we stopped by Men’s Wearhouse (in Orem, on the corner of University Pkwy and State St). The sales-people there know me, as I do much of my shopping there. We explained what we were looking for. They didn’t have anything his size, but suggested several places we might look. We’d visited each of them. The salesman then asked if it would be alright for him to call around to other stores. We agreed, and gave him my cell phone number.

Across the parking lot there was (yet another) white clothing store. They didn’t have anything in stock, but had a (frilly) tuxedo in his size that they could bring down from another store. After looking at a similar one in a different size, it was clear the tuxedo was much too flashy given the solemnity of our purpose.

While we were there, the gentleman at Men’s Wearhouse called—he and another worker had been scouring the phone book, and suggested a couple of other places we might try. We thanked him for his work, but we’d already visited the places he was suggesting.

Fifteen minutes later, he called again. After dialing every listing he could find, he had tracked down a store in American Fork called Little Things Mean a Lot, which not only had a suit in the right size, but was holding it for us.

When we arrived at Little Things Mean a Lot, the salesperson there expressed her condolences, and showed us the suit (which was waiting at the front). It was perfect. Clean, simple, and white. She said she’d spoken with the manager before we arrived, and given the nature of our circumstances had agreed to offer us a discount. We were grateful and impressed, and ended up buying suits for our other children as well, in part because the service was so good.

As a customer, I’m not afraid to boycott a company for lousy service, or support a local company that’s filling a local need. It’s experiences like this that make me a customer for life. I wish more companies were like these two.


29 Aug 2004 – 18 Aug 2008

Funeral services

Thursday, 21 August
11:00 AM
Graveside service at Orem Cemetery will follow

Viewing

Wednesday, 20 August
6:00–8:00 PM

South Provo Stake Center
835 South 500 West, Provo, UT

In lieu of flowers, please consider contributions to a memorial fund in Tobin’s name at any Washington Mutual Bank, or donations in his name to the Make-A-Wish Foundation of Utah, or Primary Children’s Medical Center.

[PDF version of announcement]

UPDATE: The obituary printed in the Salt Lake Tribune is online. Feel free to leave comments there, but if you leave ‘em here, I’ll have ‘em longer. =)

Thank you all for your thoughts and prayers.

UPDATE: funeral arrangements

The day we found out about Tobin’s cancer, I phoned my study group to let them know. They immediately promised to cover my portion of our group assignments, and asked if they could tell others about our situation. With my consent, they contacted the MBA administration and the MBA Spouses Association (MBASA)—who are better organized than any church organization I’ve ever seen. The following evening, a calendar had been posted on Google and families had signed up to bring us dinner through the end of the year. A day later, a group of the spouses came and cleaned our house from top to bottom.

In the past couple of days, MBA students and spouses, through many anonymous contributions, showered us with cards, presents, blankets, and a very sizable (and unexpected) donation of cash which will be used for gas to and from the hospital. Even some professors have chipped in.

On hearing of Tobin’s cancer, one of the MBA spouses contacted an organization called Children with Cancer for Christmas. We were immediately invited as guests, and told to pick out gifts for all of our children. (The party included Cosmo, in a blue santa outfit, and Santa himself, wearing red.) The generosity of our community again overwhelmed me. Tobin is getting a Fisher-Price basketball stand; my middle son is getting a bicycle. (Our oldest son can read, so I won’t spoil his surprise.) Wow.

I’m lucky to also have strong family support. I have three siblings in Utah who have variously spent hours (even overnight) with Tobin in the hospital, or babysat our other sons while we visited Tobin. Two sisters on opposite sides of the country (Seattle and Pennsylvania) have sacrificed, despite their own significant troubles (one is pregnant and on bed-rest), to fly my mother out to visit so we could spend more time at the hospital. My mother-in-law (who lives close by) has helped too, even though she is disabled and not ambulatory.

One of the up-sides of doing some little work for state government is that I’m able to participate in a pretty good health insurance plan. Between our insurance and other programs Tobin qualifies for, I believe our medical costs will be covered.

If one has to have cancer, Christmas is the best time of year to be stuck in the hospital. The Utah Grizzlies stopped by to visit. The Utah Highway Patrol came and dropped off the most hideous stuffed animal I have ever seen (right)—but it made Tobin laugh, and that’s what counts. Even Santa Claus himself has come by several times.

I’ve had many people email, call, or even stop by the hospital asking how they can help. We’ve received more than I could have ever asked for, and help continues to pour in. Tobin’s hospital room is decorated in Christmas lights, and his bed is covered in stuffed animals. The only thing I can ask is that you pray for us. Pray for peace, and that God’s will may be done.

If you still wish to share, consider contributions to worthy charities, including the United Way, KSL’s Quarters for Christmas, or the Huntsman Cancer Foundation.

As inadequate as my gratitude is, I can only offer my thanks, and promise that I will pay it forward. Thank you. Thank you.

May God bless each of you, and may your Christmas be merry.

Tobin had been sick for a few weeks, with a cough that wouldn’t go away. Multiple trips to the doctor’s office offered no respite. Antibiotics didn’t work. An inhaler didn’t improve his breathing. He visited the doctor’s office again on Monday, December 10th, and was seen by a “substitute” physician (the doctor was out for some reason).

A quick test showed his blood-oxygen level was insufficient (low 80s, if I recall correctly), and we were advised to take him over to the emergency room at UVRMC. There, the triage nurse confirmed the low oxygen saturation, and fast-tracked him in to the ER, where he was immediately put on oxygen.

They did a chest X-ray (because he was having trouble breathing, they moved him to the front of the line). The doctor concluded he has a “raging” case of pneumonia, and his labored breathing was caused by a significant amount of fluid in his right lung, rendering it almost useless. Draining it would require surgery to insert a chest tube. They sent us by ambulance up to Primary Children’s Medical Center (PCMC).

Shortly after arriving at PCMC, they gave him a CT scan. During that scan, it was clear something was abnormal, because there were six people crowded in a small room studying the monitor intently.

Only a few minutes later the doctor came in and told me Tobin has cancer, most likely neuroblastoma (the neuroblastoma diagnosis was later confirmed as stage 4). My wife arrived as we were discussing it (she had stopped to make arrangements for our other children), and we started the conversation over.

Tobin was admitted to the Pediatric ICU (PICU), where he stayed overnight before being transferred to the cancer ward the following day.

(I realize this is a rather depressing place to end, but I’m tired. I’ll write more in the coming days.)

In July and August I was able to finish up work with the startup I’d been developing for, helping them see their first profitable quarter. The long hours hunched over a computer quickly transitioned to long hours studying, as I quit work to go back to grad school full-time.

During these past few months, I’ve been wanting to blog about several things, including:

• Draft legislation [pdf] (as yet unnumbered), as discussed by the Joint Education Interim Committee on 14 Nov, which proposes to make the State Board of Education partisan, and increase its elected membership from 15 to 29 (a bad idea)
• Rubber ducking (aka “Talk to the duck”)
• Prototype, script.aculo.us, and Christophe Porteneuve’s excellent book, which I was privileged to review
• The Five Dysfunctions of a Team, by Patrick M. Lencioni, particularly the part about how effective teams encourage controversy

Life threw another curve-ball last week: we learned our three-year-old son, Tobin, has cancer. The response from family, friends, colleagues, and even strangers has been overwhelming. Despite this new trial, I feel truly blessed.

I’ve avoided delving much into personal matters thus far, but I’m gong to break my own rule, and chronicle Tobin’s treatment in future posts. (Subscribe to the Tobin-specific RSS feed .)