Day -1 - update from Frank!

Greetings from Frank in Southern California, where I’m with Síle as her bone marrow donor. Eoin is also here, having said good bye on Sunday to Nora, who headed back to Oakland. The non-medical parts of these notes are written with the Irish audience mainly in mind, so apologies to US readers for telling you what you already know.

Today was ‘D’ (donor) day for me. I’m just out of the unit where the stem cells have been extracted, and I saw the bag with Síle’s name thereon, so first part of mission completed. It involves being plugged into IVs on both arms for 6 and a half hours, the main obligation being not to move one arm from the straight position for the duration, a surprisingly hard thing to get used to. The staff are great, solicitious, informed, skilled and helpful. My nurse was Jade, originally from Taiwan; we both agreed that Taiwanese food is the best in the world; she went to some trouble to give me a map of the restaurant in this hood that comes closest. It is possible that I have not produced enough for Sile – one’s stem cell productivity declines with age..; if so (I’ll get a call this evening with the news), I’ll need to repeat the procedure tomorrow.

The fruits of this effort are transferred to Sile, who, having completed her chemo, is now on anti–rejection treatment. This happens tomorrow, Wednesday January 29th, ‘day Zero’ as they call it here, reminiscent of Cape Canaveral…they can press ahead even if my supply today comes up short, as they can add the extra later.

As you will know from Eoin’s blog, Síle’s treatment leaves her nauseous part of the time, with little appetite, but she engages with the staff at all levels with gusto, knowledge and sociability.

I was prepped by showing up every morning for the past 4 days at 10:00, get two neupogen shots which are designed to stimulate the bone marrow to produce stem cells. You are warned that your spleen could explode (but in well over 10 thousand transplants it hasn’t happened yet at CoH, and mine is so far intact..), you could get headaches and other aches and pains as the bones respond and expand. I’ve found it very difficult to distinguish the base load of aches and pains that are routine, from any new ones. But I have taken a few Tylenol a day, and have been fine.

Where we are

We are in the town of Duarte, 37° Latitude (Dublin is 53°), located on the Northern boundary of Greater Los Angeles, whose expansion further north is thwarted by the San Gabriel Mountains  (with the Sierra Madre Mountains to the East). The land in this west to east wall of mountains is in public ownership, managed by the US Forest Service, with wilderness areas, recreation areas and general hiking land in glorious profusion. Duarte and its adjacent cities and towns (Monrovia, Sierra Madre, Arcadia, Azusa etc.) all merge, linked by streams of low level strip (shopping) malls, with Huntington Avenue being a key artery. Nora observed that the quality of the landscape would be hugely improved if every now and then they had included a significant building or monument of visual distinction – but they didn’t. The distinctive city in the neighbourhood is Pasadena, 30 minutes to the west, home to California Technical University (Caltech), the Rose Bowl (a famous American Football stadium), and ‘old’ Pasadena, where the street scape of the early 20th century has been maintained. Monrovia is the next door city, and it too has ‘old Monrovia’ also with character, and a place where pedestrians have parity of esteem with motorists.

The beautiful weather – 40 days without rain and counting - mostly sunny, low humidity, with highs around 22 C – is perfect for visitors, but less so for the locals, who are conscious that this should be their rainy season; they are in their 3rd year of drought, the snow pack is only 17% of normal, and the Governor (Jerry Brown) has issued a ‘Drought Declaration’. Leading editorials in the San Francisco Chronicle and the Los Angeles times testify to the seriousness of the challenge.

The City of Hope hospital complex is in style like a university campus; ~150 acres (same size as UCD Belfield) with a lot of green space – which is watered every night - an impressive fountain at the front door, a number of low rise modern buildings, including clinic, library research centres, and the hospital – Sile is on the top (6th) floor. There are lovely garden areas, and the bird song is wonderful.  Almost very square meter – garden flower beds, buildings, atriums, waiting rooms, library etc. etc. is sponsored, mostly by individuals, but also by companies.

It also includes ‘the village’ a series of bungalows – labelled ‘casitas’ by Síle - each comprising one large bedroom space with TV, two large ‘leather’ brown couches, and 2 chest of drawers, one side board, table for eating, all in knotty wood. There is a one bathroom-shower, and a kitchen with stove (no grill) fridge, micro wave, cutlery, pots and pans, but no cutting board. There is clothes washing and drying facility (free) beside the office. The biggest gap in the offerings in internet access, which is not available in the casitas, a huge disability (They promise correction ‘in a month’).  The general view is that these facilities are functional (excepting the WiFi Gap) but seriously aesthetically challenged; management are very sparing with up front information, but helpful if asked.

Shopping involves going to a large supermarket called Ralph’s on Huntington Ave (left out of the hospital onto Duarte, right at Buena Vista, and left on Huntington) which requires driving a few miles. [Today I discovered a Mexican restaurant and Hispanic-run small grocery on the left corner of Duarte and Buena Vista, which is walkable]. The bilingualisation of this part of California is evident everywhere; one hears more Spanish than English spoken in the neighbourhood.

The Treatment 

This is a place that specialises in bone marrow transplants – this unit opened in 1975, and completed their ten thousandth in 2011 - so they have a serious track record, and it shows in the systematic professionalism we have encountered. There is huge pride amongst all staff about their mission and their hospital. Appointments are on time, explanations are complete, staff is super-responsive to medical questions, and when you ask directions, someone – often a volunteer – takes you to where you want to get to – shades of Japan.