Good News, Hard News, and the Long Road Ahead (BMT)

This is Ian and Christy’s friend Amber again.  I spoke with them a few days ago and wanted to share a few updates—bright spots, as Christy says, first, then treatment plan details.

In true Ian form, when I asked him how he was doing he exclaimed: “Great! Well, today, great!”  He had jogged two and a half miles with his friend Alex the day before which, while less than he could do a few months ago, is not bad for a dude fighting blood cancer!

The previous couple of days he had been on lots of walks with the girls, read Little House on the Prairie with Asha and played dollies with Fiona… who just started walking and celebrated her first birthday! She is a bundle of developmental milestones and joy.  Here is a picture and video of Fiona’s first chocolate and first ice-cream for her birthday:

             

Last week Ian and Christy had a very long appointment at UCSF where they learned the details about Ian’s treatment plan over the next four to five months.  They also learned that the last chemo treatment destroyed some of the alveoli in his lungs, leaving his lung capacity at 63% (80-100% is the average for a healthy adult). This may be permanent damage, so Ian is grieving this.

The great news is that Ian’s brother is a bone-marrow match! Ian had been expecting to do 3 rounds of treatment, but since a match has been found so soon, the 2nd round of chemo will be dropped.  Who doesn't want to skip some chemo?

The bone-marrow transplant has a 10-15% mortality rate in the first 90 days.  This can be said more gently, perhaps, but it doesn’t change the statistic. The first ninety days out of the hospital are critical—if he gets an infection it could be fatal. There are two major risk factors during this time: infection and Graft vs. Host Disease (GVHD). GVHD occurs when the new immune system does not accept its new home, but attacks the new body's organs - generally skin, intestines, and liver.  To avoid this as much as possible, Ian will be on immunosuppressants while his brother's immune system is adjusting to his body, which means he will basically have no immune system during this time. If he does get an infection,  it will trigger his new immune system...which may decide to fight against Ian rather than the infection, causing more severe GVHD in addition to the infection.

Click here to read more about the risks of infection, rejection, and graft vs. host disease. There are a number of plans they need to put in place, including a quarantined and clean location for him to live for those ninety days, a 24/7 caretaker, and finances to cover all of these expenses.  It is truly a grueling amount of preparatory work. Financing the seclusion and care will be difficult. The reality is sitting heavy with them at moments. And in other moments they are just enjoying their time together and preparing for the road ahead.

Christy’s parents have returned to the bay area and will stay with Christy and the girls for the next four months.  And right now Ian and Christy are exploring caretaker solutions and looking for a suitable space for Ian to convalesce when he comes “home” in late February or early March: quiet, secluded (the risk of infection is very high), inexpensive, and as close to Christy and the girls as possible.  Some options are on the horizon via some gracious friends, they'll know more if it will work out in a few days. Please pray that a situation that meets all their needs will quickly come to pass.  To aid in your prayer, click here to learn a little more about the specs for Ian’s post-transplant needs.

And so that you know what to expect in the course of Ian’s treatment, here is a rough sketch of the plan, starting with January 29^th when Ian heads back to the hospital. 

·         5 day chemo regiment begins (Jan 30)

·         2 days to recover (Feb 5)

·         Transplant (Feb 5)

·         2.5-3.5 weeks of recovery in the hospital, waiting for bone marrow to begin producing blood (~ likely release between Feb 21 - Feb 27)

Sometime in the next week we’ll put up a post about all of the ways you can help—whether through practical means like giving blood or finances, or through prayer and moral support—you’ll get all the details soon.

Thank you for your attention and care to Ian, Christy, Asha, and Fiona in this time. Your friendship and support are an enormous blessing to them.

Warmly,

Amber