Month: October 2010

30 Days of Light

/ Evan / 3 Comments

We’ve now gone 30 days since Day +100, and things continue to slowly improve. Our last few visits have seen Zoe’s WBC counts between 5.5 and 6.0, holding fairly steady. That puts her in the low normal range, and she hasn’t had any growth medication since that last time.

The biggest improvement overall has come in the form of a medication, one that we wished we had started months ago, called Reglan. It’s a bowel treatment medication that suppresses spit-ups and speeds along digestion. Zoe has had the worst time transitioning to solid foods while still healing from her chemotherapy, and as a result we’ve really struggled with her ability to keep food down.

Since the introduction of Reglan, however, she has had almost no major incidents and has gained some weight and is growing consistently. She began this medication after we pushed for a solution to her bowel issues, which is why I mention it. I’m not sure it’s standard treatment in these cases, but the results we’ve seen have been fantastic. I know I sound like a commercial, but this was a really big leap forward for us and I want to mention it in case others have this issue.

We have finally left Durham, and the girls and Michelle are currently staying in Asheville with family while some work is done on our house. I’m back home for the moment trying to make sure things move along with the renovations — we had to have some things done to our older home before Zoe could safely return.

It’s been a huge relief to leave Durham, we had really begun to feel we’d forgotten what it was like to be anywhere else. We are grateful for the “clean” apartments set up by the Evanosky Foundation for the use of transplant families, but as nice as they were, they weren’t home. Another couple weeks and we hope to all be in one place again.

Zoe is progressing well developmentally. She’s not crawling yet, and we’re beginning to think she may just skip it. My mother tells me I did at her age, so who knows. Zoe is able to stand when held or against something supporting her for decent amounts of time now, but she is also rocking on her hips a lot and scootching around. We’ll see soon what path she decides to take.

All in all, things are progressing well. With the continuing construction on our house and the lateness of the year though, it’s quickly becoming clear that by the time we’re all back together and healthy, this entire year can be written off to getting Zoe through this. It’s better than the alternative of course, but it’s still hard to believe the year is almost over and we’re just now on our way home. If it weren’t for writing it all down, I’m not sure I could tell you exactly what all happened, it’s been such a blur.

PS – Please excuse the horror movie reference in the title, but it is Halloween, after all.

Post-transplant Work-up

/ Evan / 4 Comments

Today was Zoe’s 100 day post-transplant “work-up”, which means we shuffled through a long day at the Duke Children’s Hospital clinic subjecting Zoe to the same battery of tests that she received before her transplant. She had an echo-cardiogram, the “scream” test for pulmonary function, full blood draws and x-rays. We did not have to have another CT scan, nor did we have to do the nuclear kidney/liver function test. Zoe’s Creatinine and Bilirubin (markers of kidney and liver function) give us no reason to believe she isn’t recovering or fully recovered from her cyclosporine treatments.

The good news is that everything came back just fine so far. Zoe is a fine screamer, her pulmonary test came back better than it did pre-transplant, her xrays looked fine, and her blood counts were almost all in the normal range. The great news is that she did not need “G”, her WBC count is up to 5.6 on it’s own. She’s gone 2 weeks now without a boost, and the counts went up not down. We’re optimistic this means she’ll never need it again.

The visit felt very much like a cap to our experience at Duke. Most of the same tests, only this time with an eye toward making sure everything is fine so we can go home, rather than being fine so that she can be admitted and subjected to chemotherapy. The feeling was entirely different.

Zoe still has a bit of thrush, but given her newfound love of spitting out her medications, we decided to pursue the nuclear option to clearing it up. They gave her a purple dye-like medication that coats the inside of her mouth and throat and suppresses the thrush. The upside to this is it only takes 3 applications over 3 days, the downside is that it is really strong dye.

It’s permanent on pretty much everything except skin I’m told, so Zoe has to wear a little bib for the next few days, and everything she puts near her mouth will end up purple. As we were finishing up the application of it, the nurse lifted Zoe up to a sitting position a little too quickly and she spit up a bit. In a heroic attempt to save her clothes from the purple menace, I caught the spitup in my hand, and was rewarded with a purple hand for my troubles. The dress still didn’t make it. After that, we put on her bib and I gave up any hopes of joining the secret service.

There was a bluegrass band playing in the lobby for the duration of our visit, giving an interesting soundtrack to our Family Circle trek all over the hospital for our tests. There were definitely more smiles than usual everywhere we went, as a result. All in all, a great day.

Programming Notes

/ Evan / 4 Comments

If you haven’t seen it yet, please check out the most recent update on Zoe — she’s had a big week.

We’ve reached our biggest milestone along the way to being able to say we’ve beat this thing, the 100 days post-transplant without incident. No infections, no resurgence of the disease, no loss of graft, and a 100% donor cell immune system. In addition to reaching that milestone, she has now had her central lines removed and a portacath installed. The porta-cath is a smaller site for IV access that does not require daily care, flushes, cleaning, or otherwise risky access to her body, each of which poses a risk of infection. She can now go into a (clean) pool, a real bath, and roll over with abandon.

Our next steps are to make it to her first birthday in January, and then a year post-transplant. We fully expect things to continue as they have been at this point, we’ve seen no reason to fear her disease will come back, and now we just need to keep the whole family healthy until her immune system is robust enough to fight off infections on it’s own. She will still need regular hospital visits, blood draws, and “G” to maintain her white blood cell count until it maintains itself, but these are minor chores when compared to what we’ve been through until now.

I’m not sure it’s hit us yet, but I imagine one day we’ll wake up and realize what we’ve been through. Until then, we’ll just keep moving forward and try to get back to a happy place — right now I’d say we’re exhausted and dazed, ready for the stress to pass.

What does that mean for this site? Well, I began this site as a leap of faith. I wanted to document an experience with this deadly disease and hoped that in the end things would work out for us, and that a positive and successful story would be easily found and accessible for parents coming along behind us who have to face what we have faced. This site will remain as it is indefinitely, and I’ll continue to be in contact with anyone who has questions about HLH and our story should they need us.

I will be updating periodically when we have news to share, but not nearly as often as we have been. I would think that once a week or every other week is more likely, and in time that will drag out even further as we resume a normal life. I’ll post milestones and pictures when I have them, particularly when Zoe has grown up a little more. I want parents to see that a child can make it through this and be just fine. Hope is a very important thing to have.

Day +100

/ Evan / 10 Comments

It’s been an incredibly long year. We’ve largely set aside our lives as we turned our focus to seeing our newborn through a terrible, rare and unforeseeable disease and all of it’s consequences. When we began this journey, I honestly didn’t think we’d be where we are today. I didn’t think Zoe would make it through this nearly unscathed. I feared for her very life based on the statistics, feared she would develop a neurological disability, feared she would suffer from any number of other permanent side effects to her treatment.

Today, Day +100, I can say that it appears we have made it. Zoe is bright and healthy, eating on her own, off most of her medications, and officially an HLH survivor. There continue to be worries, but increasingly they stem from having an infant and all of the peculiarities that each child has, and not from having a sick infant specifically.

On Monday she is scheduled to get her central lines removed, which is another very big day. She’s had lines in her chest now since she was about 2 1/2 months old, the majority of her life. We’re hopeful that, once they are out, she’ll feel much more spry and ready to work on her crawling. As of now, she doesn’t like being on her belly for very long, the lines and clips dig into her chest a bit.

It’s a little hard to say where we go from here. Both Michelle and I are looking at life changes as a result of this, and both of us, and Maya, feel irrevocably changed by the entire experience. I wouldn’t wish it on anyone, but it has been an amazing experience in both the highs and the lows. We’ve found new ways to bond as a family even as we’ve been forced to spend too much time apart. We’ve found ways to grow as people as anyone might, faced with unexpected hardship. We’ve watched our girls grow up even as the world seems out of control around them, and come out of it, well, just fine to our amazement.

I started out writing this blog without having much idea of where we were going. It was, and is, a way to cope with what we’re experiencing. I’ve always been better at coping by writing more than by talking or exercising, drinking, what have you. When I began, I decided that the best way to handle things would be with a bit of anonymity, so that if something bad did happen, I was not writing something that could become problematic for the doctors and others working hard to help us. We have made it through the gauntlet at this point, and so I’d like to offer a few thanks. There have been so many people we have encountered who have helped even in small but important ways, and I can’t thank everyone enough. Please know that we appreciate all of you and all of your help more than we could even convey.

We’d like to thank Dr. Dave Anderson of Forsyth Pediatrics, the doctor who first saw Zoe and trusted his gut to send her to the hospital earlier than expected or “required”, and in doing may have prevented major damage from the disease. Dr. Mike Kidder, who couldn’t sleep at night while he worried about Zoe and worked on her diagnosis tirelessly. The ER doctor who happened to have seen HLH before and, we’re told, first suggested it on rounds when her diagnosis continued to be elusive.

Dr. Thomas McLean and Dr. Marcia Wofford, Zoe’s primary doctors at Wake Forest University Hospital, who managed rapid and effective treatment of her disease and her recovery, putting her in a position to go into her transplant in the best possible condition.

Dr. Paul Martin and Jayne Cash, the primary transplant doctor and nurse coordinator at Duke, both of whom suffered my nearly endless questioning, pushing and challenges as we tried to be sure we were on the right course. Their patience with us was boundless. And, as silly as it sounds, the World Wide Web for existing and allowing me to give myself a crash course on this disease, ultimately helping us make good decisions where, even a decade before, we’d have been in the dark.

The entire nursing team at the Pediatric Blood and Marrow Transplant Unit at Duke University Hospital, particularly Jess, Luke, Courtney and Tameka. The transplant doctors who we saw on rotation, Drs. Parikh, Prasad, Szabolcs, Page-Chartrand, and Driscoll.

The transplant families who found us through this website, followed our progress, cheered us and advised us both publicly and privately, particularly David, Andrea, Shana and Michelle. Your counsel and support were invaluable.

Our friends and family, you know who you are, but particularly Sandra and Larry, who have set aside their lives just as we have ours, moved into our home, put thousands of miles on their cars, and taken on care of our dog, Zoe, Maya, Michelle and I whenever we needed them. We never could have done this without you.