“He performs wonders that cannot be fathomed, miracles that cannot be counted” (Job 5:9)
Meet Oliver. In him is nothing but love and happiness, and next to him is a mother, father, brother, and sister that are so incredibly strong, brave, and simply amazing.
A little back story: I first got to meet this beautiful mom when she had her second little bean. I was there to capture moments of her new newborn and soon I was there to celebrate a birthday celebration. For over eight years I have been blessed in watching toothless grins and belly laughs. Recently I sat thousands miles away on my computer as she welcomed a new little bean and I sat in tears and fears and moments of prayers as I read her notices of the battle little Oliver faced.
But today- on this special day- I got to see this little guy and spend time again with his family. I honestly did not know what to expect but what a blessing I received when I walked through those doors. I was greeted with hugs, smiles, and giggles. Our session time was about seeing them in their everyday; the simple things we do each day. I left their house that day with the biggest headache from smiling so much a heart that was so full that I just had to cry- for happiness and the miracle.
Here is the journey and the twist of Oliver.
Oliver was born with a rare disease called hemophagocytic lymphohistiocytosis or HLH. This disease is fatal 100% of the time in just 4-8 weeks if not treated, and is extremely difficult to diagnose as there is no test that can be done to screen for it.
When Oliver was born he had some bruising called petechiae that led doctors to run some blood tests. Oliver had a dangerously low number of platelets and red blood cells. On the day he was born he received the first of many blood and platelet transfusions. Our baby was sick and the doctors felt he was too fragile to hold. All we could do was watch as Oliver received care in the NICU. His neonatologist thought he had an infection of some sort so she started him on antibiotics. But the antibiotics were making him worse fast and we were not seeing his red blood or platelet counts increase after transfusions. We didn’t know it at the time, but his disease was killing the blood cells faster than his body could use them. In turn, this caused his liver and spleen to get ‘backed up’ as they couldn’t process the dead cells fast enough. Oliver’s belly quickly began to swell. At 5 days old they had flown Oliver to Seattle Children’s Hospital where we had over 30 doctors meet him within hours of arriving.
They told us we would be able to hold him and I remember sitting next to his incubator for hours waiting for them to tell me when I could wrap my baby in my arms! I can’t even describe how good it felt to hold him! We were certain someone there was going to figure this out and we would be home in a couple of weeks. Several teams of doctors were following Oliver and we had a waiting list of blood tests each team wanted to run. Every morning we sat down with Oliver’s doctors and every morning they told us the same thing-“we don’t know what this is, all the tests that are back are normal and we’re going to transfuse today.” Oliver’s life was dependent upon blood and platelet transfusions. I can’t remember how many he had-but it’s in the dozens. Finally, at 5 weeks old one of the hematologist that was following Oliver thought of HLH. Oliver did not have enough symptoms to diagnose him with the disease, but if we waited for more symptoms to appear it could be too late to treat him. They wanted to start treatment right away… and the only way to treat HLH was with chemo. My 5 week old baby was about to get chemo to treat a disease they weren’t even sure he had?!
We were not quick to agree! But after realizing that we had ruled out all treatable diseases we knew this was his only chance of survival. There was one problem – Oliver was too sick to get the treatment. If his doctors followed the treatment plan for HLH it would have killed him. So they gave him as much as they thought he could handle. 1/4 doses, 1/2 doses… sometimes skipping doses. Not one doctor was shy about the fact that they didn’t exactly know what they were doing.
With chemo comes steroids. With steroids comes cardiomyopathy… and the side effects of treatment just kept coming. The 9 week chemo treatment turned into 5 months. Diuretics, blood infections, surgeries, respiratory distress, feeding tubes and bone fractures. Parents living in a hospital and our family separated and 6 hours from home. When I look back, I can’t believe we did this! We made each other laugh, we made friends with nurses and CNA’s (thank GOD for those nurses and CNA’s!).
Oliver’s health went up and down several times-having return trips to ICU and back to the cancer care unit. Sometimes he would be discharged and we could take him across the street to the Ronald McDonald house-but still, we spent our days in the hospital clinic and eventually he was always readmitted.
There are 2 kinds of HLH. One is familial (genetic) and one is infectious. Both are treated with chemo but if you have familial HLH you need more chemo and a bone marrow transplant to cure it. A bone marrow transplant can be a beautiful gift and when needed is amazing! But Sean and I weren’t convinced Oliver needed a transplant. Don’t ask me why-I wonder sometimes if we just didn’t want him to have to get the transplant so badly that we blindly believed he didn’t need it-but regardless we said no to the transplant. In retrospect this was bold and maybe even foolish. Being born with HLH there was less than 1% chance Oliver didn’t need a transplant and here we were saying we weren’t going to do it! Doctors reluctantly agreed not to transplant. The risk here is that if Oliver DID need the transplant-as we weaned off chemo his disease would grow stronger as attack more fiercely than before-and this time it would be more resistant to the treatment giving us a lesser chance of controlling it. Usually this disease will flare up within 7-10 days of coming off chemo so we watched him closely as we came off the chemo.
His last chemo dose was over a year ago! We still do labs every month to watch his blood counts and disease markers but his labs are beautiful! He is beautiful! He plays in the fountains, eats sand at the beach, unrolls my toilet paper and kicks me in the face while I’m sleeping. He fought hard and we won!