We were holding our breaths with Joseph from his 2nd day of life. He started turning yellow and was very, very sleepy. The day after we were discharged from the hospital, he was directly admitted to the NICU for hyperbilirubinemia, which is severe jaundice. After 4 long days, he was discharged. After a few weeks, the jaundice cleared, and we thought we were in the clear. Just a quick follow up at 3 months old to make sure everything still looked great.
The doctor walked into the exam room with Joe’s lab results and she said “Well, his bilirubin is totally resolved, that’s not an issue at all. But he is neutropenic. Do you know what that is? Has he been sick recently?” Then all I heard was “it’s probably not cancer, but we need to make sure.”
Neutropenia is, by definition, “an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections, particularly those caused by bacteria and fungi.”
We started picking up information very quickly. Any fever of 100.4 or greater and Joe needed IV antibiotics within an hour. If he didn’t get them, and obtained a bacterial infection, he would get sepsis and die. Quickly. We switched his care to Connecticut Children’s Medical Center after meeting with Dr. Parikh for a second opinion, and he confirmed everything we already knew. He also confirmed the type of neutropenia Joe had, autoimmune, and reaffirmed to us that it is usually outgrown in a few years.
You never forget the first fever. He was 5 months old, and it was the middle of the night. 3 days before Christmas. Why are they always the middle of the night? We live an hour from the hospital. Parents of chronically ill children know how much this can affect a marriage. As much as you love each other, those rushed trips to the hospital make things so stressful. Every hospital stay was a minimum of 48 hours. 48 hours. 48 hours. 48 long hours. 48 hours is only two days. But two days in a hospital with an infant can seem like a lifetime. The shifts change, but everything is the same. Pokes, middle of the night vitals, residents, vending machines. You have to call out of work, find somebody to watch your dog, get your mail. You inevitably leave your comb at home, or extra hair ties, and when you’ve waited a really long time to take a shower, a missing comb seems like a really big thing.
After the first stay, we went home, and isolated ourselves. No grocery trips, no visits to see Santa, no family reunions, no holidays, nothing that could put his health in jeopardy. But babies still get fevers.
The second hospital stay, we found out he was severely allergic to a particular antibiotic. I thought he was going to die as he turned purple, started vomiting, and struggled to breathe. The third hospital stay, we missed a concert my husband had bought us tickets for. The fourth hospital stay was Easter. The fifth was his first birthday. At that point, we decided to start him on a life changing drug called Neupogen. We administered shots to him at home once or twice a week. Neupogen is a bone marrow stimulating drug so it boosted his neutrophil production. Side effects? Bone pain. He would cry every night after we gave him the shots. All we could do was rock him and wait for it to pass. That was July 2013. The hospital trips decreased greatly after that. We expanded our safety net-storytime and gymnastics once a week. He still got sick, but the Neupogen helped him fight. I was breastfeeding and was constantly told that was the best thing for him-breastmilk provided immunities he may not have had otherwise.
Joe had a bone marrow biopsy shortly after starting the Neupogen and everything looked normal-still no cancer. Just neutropenia. God bless anesthesiologists-I can’t imagine putting children “under” day in and day out and having to deal with parents like me.
When our second son was born May 2015, we were able to bank his cord blood and tissue for free, thanks to ViaCord’s Sibling Connection program in the event Joe could ever benefit from a transplant.
Then came August 2015. At a regular quarterly appointment, we realized Joe had neutrophils. A lot of them. Dr. Parikh had us hold off on the next neupogen dose, and we saw Joe’s numbers stay up. We started holding our breaths again, now full of hope instead of fear for the first time since he was born. August to November. 3 months and over 10 lab draws.
Monday, November 23rd, Dr. Parikh formally discharged Joseph from the care of hematology. As quickly as it had begun, it was over. I have learned so much from this 29 month old of mine, and from his journey. Be nice to nurses. It’s okay to cry. Trust your doctors. Trust your gut. Let people help you. Don’t be afraid to ask questions. Never, ever, ever give up hope. If you don’t have hope, you don’t have anything at all.
Emily May, Joseph’s mom
PS-If you’re reading this, I urge you to consider registering to become a bone marrow donor with BeTheMatch. We are the lucky ones. Many other children and adults need your help.