“Well, here we are. We’ve come a long way from where we were a year ago, having just learned that our child had a rare condition that might kill her. We fought, she fought, and we’ve made it this far, and things appear to be improving as each month passes.”

I began writing this post a few days ago, thinking I could get it ready and put it up on the anniversary of her diagnosis. What I wasn’t prepared for is how strongly my emotions about the day would become as it approached, making what I wrote simply insufficient.

Zoe had her first birthday January 10th, and it was a joyous occasion, but it didn’t compare to today somehow. We all go through traumas of one sort or another in our lives, no one is really exempt, it’s more a matter of degree and timing, and what these events make of our lives. This past year has come to be the most important in my life so far I now realize, but I don’t think I realized it as it happened.

When I look at Zoe these last few days, I tend to tear up — not in sadness, but in wonder. I still can’t believe some days that we’re so lucky as to still have her. My wife and I go back and forth about how her life was saved — did we have a hand in it? Did our pediatrician earn his wings that day he made us go to the hospital? Was it the emergency room doc at WFU who just happened to give his input and start the chain of events that gave us our diagnosis who saved her? Was it Duke’s amazing transplant program? Obviously it’s a little of each. What’s certain however is that there is a degree of luck involved in it all, and I’ve come to believe that our role was to improve her odds as much as we could, to load the dice, giving her a shot at life.

We put all of our energy into learning about the disease, the procedures, the drugs, did our best to have a crash course in anything that could potentially improve Zoe’s chances. It’s impossible to say how much any of it mattered I suppose, but being involved mattered a great deal to us. We look at Zoe today and we are brimming with love, hope and pride by turns. It’s an amazing feeling, but it may take the rest of our lives to figure out what happened this year.

Where are we now?

Zoe is a vibrant, smart little girl. She’s walking, using her first words, babbling, climbing ladders and couches, diving off beds and rolling around on the floor with her sister whenever she gets a chance. She seems to be progressing exactly as her sister did, which is to say, perfectly normally.

She still has a med routine, she still has clinic visits, she still has a port running directly into the veins in her chest for blood draws, and she still is quite limited in what she can do. She cannot be around large groups of people, she can’t go to malls or the circus or farms where there is exposed debris and livestock. She has to be kept in the shade most of the time, as going in direct sun sets can cause a rash very rapidly. We have to limit who can visit our home so that we can be sure we’re not introducing any colds or flu to her “safe” zone. But, each day takes us closer to the day when she doesn’t have any restrictions and we don’t have any fears about her health.

Zoe had her most recent clinic visit on Monday, and it held a pleasant surprise — we’re switching to every-other-week clinic visits. We probably could have done so before, but we’ve had a rough time stabilizing her tacrolimus, and with the little rash scare she had awhile back we just never cut back on visits. The doctors at WFU feels she is ready now though, they have no concerns and feel her numbers are good. Her WBC is at 7.9, and her Platelets are 262, both really rock solid at this point.

Her IgG count has been dropping, but remains in the normal range. This is a count that gives us an indication of her antibodies, and she periodically gets a boost to them — her last boost was at the start of the year.

We have been weaning her off of her steroid and she is now down to a tiny dose, to be off completely soon. Zoe is currently at 40th percentile for weight, and 40th for height, which are just fine — she should be able to catch up to her norm in time.

In general we are just incredibly pleased by how things are going. It can be stressful at times still, but each month that passes brings us further and further away from the really dark times, and closer to a feeling of security with her health. It’s hard to believe looking back on where we were a year ago that we’ve made it so far.

The rooftop playground at the Brenner Children’s Hospital:

httpv://www.youtube.com/watch?v=7ufWJns-p2M

Tough Times

The last couple of months have been hard in other ways. Not because we have had any major complications ourselves, but because we’ve heard mixed or bad news over the course of flu season from several other families we’ve been following, or who were being treated as we left the hospital with Zoe. Hearing about a child passing due to complications from HLH or a similar condition is just devastating, and each time it happens we have to take stock of where we are and how grateful we are. We get to share in the victories as well, but there are too many children still fighting losing battles out there.

When you are thinking about what you can do to help, there are several options. You can support organizations like Bonemarrow.org, Histio.org, and the various foundations set up by parents to raise awareness about a particular disease.

You can also try to keep in mind that policies being enacted in various states have real consequences, and that if you are in a state where procedures like transplants of the type that saved Zoe are being limited or even removed as an option for some families, you can contact your Senator, Congressperson or other representative to voice your opinion.

Throughout this process I’ve spoken to folks who live in the U.S. as well as many who don’t, and hearing as I have several times from someone who lives in a country that doesn’t have the medical resources to treat HLH properly is saddening on a very deep level. Their options are terribly limited and this disease is relentless.

We in the U.S. have the technology and resources to treat these kids, and yet in some states we’re saying to them that we won’t if a family has the wrong insurance or is on Medicaid. No one deserves to die because they can’t afford a transplant out of pocket, and I hope those of you who read this will remember children like Zoe when it comes time to decide where budgets should be cut.