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.
I know you are experiencing so many emotions! It is great to hear that Zoe will get those lines out on Monday! When you are going through something like this you are so fearful of where it will end up and God has blessed Zoe by putting her in the path of so many great Doctors and now we see the miracle of her healing!!
Zoe is so adorable and I love the new pictures!!
Love to you all,
We have been anxiously awaiting your update as we felt it would be good news. So glad those lines will be coming out soon.
We loved the pictures- Zoe is a beautiful little girl as is Maya. We are thinking of you every day and thank you for keeping us informed on the progress.
Love to all, Nannie
How upbeat news. We want you guys to get back to a normal happy life as soon as possible. Kudo’s to Sandra and Larry for being there to fill in,in time of need.
Thinking of you always, John
Evan, Michelle, Maya & Beautiful Zoe ~
It is an honor and a blessing to have met you even if it has only been via email and comments. We are so extremely happy that Zoe has come so far and done so amazing. Please keep the news coming and know we are always thinking of you all and praying constantly for Zoe.
Much love & prayers,
Shana, Kris & Maya
Gene and I are so happy that you have reached this huge milestone. I hope to see you at home soon.
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I love happy endings 🙂
I am so happy for you all. My Zachy is doing great on day 42. Just got off the Mexylpredisone and has been out of the hospital on 9/19.
Thank you for this websie for ging us hope in our early stages of HLH
thanks so much for writing about Zoe and your experiences. I have a 4week old grandson on 10-9-10 who has HLH. my question for you would be -did you ever get the genetic testing back and what did you learn from that? was it the FHLH or HLH?
we are just now in our 4th week of treatment
thank you and God Bless Zoe and her family!
thankyou for sharing your inspiring story, it keeps hope alive for all of us…thankyou and blessings to Zoe and to your family.