Phoenix Archer Wilkinson was born on August 31st, 2014, and his life has been nothing short of one unexpected event after another.
First off, he stole my heart long before he was even born. Being pregnant, although difficult at times, was such a blessing and amazing feeling. I loved knowing that our little boy was safe and secure, listening to my heart beat and growing stronger every day. When Phoenix was born, I was in awe of the love that I possessed for him. People tell you that you’ll never understand the love that a parent has for their child, until you have one of your own… it’s so true.
Five weeks before his due date, while my husband and I were across the country for my best friend’s wedding, Phoenix decided it was time to grace the world with his presence. About six hours after our plane landed, I went into labor. Everyone who is pregnant has some sort of a birth plan (which really shouldn’t be called a “plan” at all, considering there’s no way to plan this crap), however Phoenix had plans of his own. I remember the moment when the doctor came in and told us that they were unable to stop the contractions;
“You’re having a Kentucky baby!”
After approximately 17 hours of labor, the majority of which was back labor which was beyond painful, this beautiful baby boy was born.
Born 8/31/14, 6 Pounds 2.2 Ounces
We had some amazing nurses and doctors who, despite the unplanned events, were able to provide an awesome experience for my husband and I. After the birth, I was on a high. I couldn’t stop thinking about our little one and all the fun we would have. I needed to buy him an outfit for the wedding! Obviously that was number one on the priority list!
It was only a few hours later that I started to realize that our little man may not be going to the wedding, nor would he be coming home with us soon thereafter. Because he was premature, he had some initial issues that kept him in the NICU at Baptist Health Lexington for just over three weeks. He had trouble regulating his temperature so he remained in an isolette for the majority of his stay. He was also born with a skin condition which caused him to be peely and red. Because of these two issues, he was also having trouble gaining weight. It’s a helpless feeling seeing your baby with an NG tube, wires, and IV sticking out of his head.
During this time, we were lucky enough to have close friends that helped make this emotional time a little easier. The bride and groom gave us a place to stay and fed us for the three weeks we were there, we had other friends give us their car for our entire stay, and lots of friends bought us all of the baby gear we would need until we got back to San Francisco.
Having a baby in the NICU is one of the hardest things I had ever done (and I thought birth was difficult – HA!). We got to the hospital early in the morning and basically lived in the cafeteria in between feeding/care times until we’d leave in the evening. Each morning I’d have a lump in my throat waiting for the news… good? bad? two steps forward? 5 steps back? As soon as we thought he would be coming home soon, we’d get news that something else was wrong. In the evenings when we’d leave, it felt like we were abandoning our child… when he should be coming home with us and spending the whole evening snuggling, we were leaving him in a plastic box in a isolated room. It just felt wrong. On top of that, in order to get to the NICU, we had to walk by the open windows of the well baby nursery. It felt like walking by designer store windows with perfectly paired outfits and accessories that were so far out of reach. These parents and grandparents gushing over their perfectly pink and plump babies. I hated them. I hated that their only worry was bringing home a perfectly healthy baby. I hated that the only thing they would have to complain about was sleepless nights and laundry.
Finally, on September 18th we got to the NICU to receive some fantastic news. Phoenix was out of the isolette and in an open crib! He was able to maintain his temperature outside of the isolette!
On September 22nd, Phoenix was able to leave the NICU and we hopped on a plan the next morning! We were so excited to be back in San Francisco and to start experiencing all of the amazing moments that come with bringing a healthy newborn home;
Experience the sleepless nights WITH our baby boy, experience the cordless snuggles, and the family moments with my husband and our little man without nurses and alarms. Introducing our new little one with our furry son, Dexter. Even going to brunch!
I finally felt like we were going to start seeing Phoenix flourish, however along with these amazing moments, the next two weeks were also full of doctors appointments and more unanswered questions.
After two and a half weeks of being home, and close monitoring by his amazing pediatrician, it seemed that Phoenix wasn’t gaining weight or growing and therefore he was admitted to UCSF for ‘failure to thrive’ on October 9th. We got to the hospital and talked with some of the doctors. We figured he had some sort of gut infection or that his skin condition was causing him to burn more calories than he was taking in.
After lots of testing, he was diagnosed with SCID, Severe Combined Immunodeficiency Disease. SCID is often called the “bubble boy disease” because those who are affected are extremely susceptible to infections, which could be deadly, as they do not have a working immune system. The likelihood of him having this disease was 1 in 600,000. How could this be happening? Immediately upon hearing this, I started researching. What I found was scary, confusing, and upsetting. Why was this happening to us?
Thankfully, we are in the best possible place and we have the best possible doctors. One of those doctor’s actually developed the SCID newborn screening for California! She has provided us with so much information and has promised to be with us every step of the way to ensure that Phoenix leads a normal life. Through my tears, I asked her if she thought he would be able to be a normal kid and live a normal life, what she said gave me hope:
“I see him playing basketball… and any other sport that he wants to play for that matter.”
Phoenix’s blood results came back showing that, although he does have a large number of T-cells, he doesn’t have any B-cells. B-cells are the immune cells that basically teach and regulate the T-cells so they know what they should be doing. It seems that without these B-cells, his T-cells are going a little wild and attacking his skin and gut. Hence his issues with his skin and gaining weight.
The treatment (and potential cure) for SCID is a bone marrow transplant. Prior to insurance coverage, we are looking at $750,000+ for the treatment and hospital stay. So on top of the emotional stress of it all, the financial stress was just the icing on the cake. I decided to do something that I had never done, something that I felt embarrassed to do, something that, although I was scared to do has brought our family so much support, faith, and relief. I asked for help. Financial help and positive support from friends, family, and anyone who would take the time to read our story and could provide anything from a prayer to a penny. I’m absolutely blown away at the response that we’ve received. Just 24 hours after posting our story on GiveForward, we had received over $20,000 in donations and so many personal messages providing support. At the 48 hour mark we had hit our original goal of $30,000 and had received a personal message from the co-founder of GiveForward with an extra $1000 from their team. It was an unbelievable to see so many people come together to help lift us up in this hard time. I still am at a loss for words for the kindness that has been shown to our family.
After almost 2 months of getting used to living in the hospital, we got the best Thanksgiving gift we could have asked for; a perfect match donor who is willing to donate right after Christmas! Talk about the season of giving! It’s an incredible gift for them to give!
3 Months Old, 10 Pounds
As you can see, our happy little man is starting to look like all those plump pink babies I was so jealous of three months ago, and he’s on his way to recovery!
Phoenix will start his chemotherapy treatment on December 18th to prepare his body for the transplant by killing any immune cells that are currently in his system. After the system preparation, he will receive the injection of bone marrow stem cells on December 29th and will remain in the hospital for approximately two to three months while his immune system rebuilds itself with the donor cells. My husband and I will continue to live in the hospital until Phoenix is discharged. Once he’s ready to come home, he will come home to live in a sterile room in our home for an additional 3 months or so and will continue to receive IVIG treatments (injections of antibodies) in the hospital until he has a fully functioning immune system (up to a year after the transplant).
With a fantastic team of nurses, pediatricians, dermatologists, immunologists, and bone marrow transplant doctors, we are confident that Phoenix is in the best hands possible. If all goes well, in about a year and a half this little man will be cured and will go on to lead a normal life without any additional medical intervention for SCID. There are many potential risks and issues that could arise throughout the process, however we are hopeful that Phoenix will continue to live up to his name, be strong, and we’ll all get through this with the best possible outcome.
It’s crazy how these types of situations bring out things in people and relationships. How could any couple endure such a difficult situation with their first child together and come out on the other side? One of my best friends sent me a card with the following quote from Albert Camus,
“In the depth of winter I finally learned that there was in me an invincible summer.”
When we were moved to the Bone Marrow Transplant and Oncology floor we were struck with a harsh reality. After being angry and scared, I realized just how lucky I am to have such an amazing and supporting husband who is the most amazing father to our beautiful little boy, and that our family has the hope of a normal life. Every day we are surrounded by families that don’t have anything close to what we have. Families that have been dealing with diseases that don’t have a cure, diseases that have and will take their kids away from them. Phoenix will most likely never remember any of this craziness, and although I’ll never forget what we’re going through, I’m writing this all down so I don’t forget how lucky we are and how much love I have for my husband and my son. I feel a little dumb reading my last post about the morning sickness I had during my pregnancy, however I feel stronger than I’ve ever felt before and I owe that to my family, friends and even supporting strangers.
Thank you to everyone who has been there for us. We couldn’t do this without you, and I couldn’t do this without the loves of my life, Patrick and Phoenix.
Welcome to the Wilkinson's 