Daley Ponderings

The pathology report indicated no parasites, and no bacterial infection, but confirmed the swollen lymph nodes. The doctor said, “I do not like the look of her paleness, and that spleen is really big. We need to see inside; go downstairs and get to imaging right away.” Grace had an x-ray and an ultrasound, confirming a much-enlarged spleen. At some point she had another blood test, which revealed severe anemia and a WBC of 55,000/mm3 (normal for a child of her age is 5,000-19,000).

We happened to also have her tonsillectomy pre-op appointment that afternoon, and as we were in the waiting room for that, Jon got the call from the GI: go to the Dartmouth-Hitchcock Children’s Hospital ER immediately. We continued with the pre-op appointment, but let him know that we might have to cancel the surgery depending on what happened at the hospital.

We drove all the way up to Lebanon from Manchester, meeting Jonathan partway to pick up an overnight bag, and Grace was admitted to the hospital. After more tests, they decided to give her a blood transfusion overnight. That was an adventure in itself, since they had difficulty putting in the IV (two failed attempts, even with a fancy video ultrasound to locate the veins, and after the successful infusion of two bags of blood, the third came detached and sprayed all over the room, an event that required not only extensive cleanup but reporting to the CDC! Eventually she received what she needed, and it made a great difference in her color.

The hematologist-oncologist interviewed us about Grace’s history. When I got to the part about the doctor not listening to me, she actually cried. “Always listen to the parents,” she said. “I’m so sorry that happened to you. Café au lait spots are the #1 indicator for NF1 (neurofibromatosis type 1).”

It would not be confirmed for a few days, but the doctors immediately suspected JMML (juvenile myelomonocytic leukemia). These are very rare conditions, caused by very rare genetic mutations; it is not an encouraging diagnosis.

On Friday, they put in a Broviac central line, which went super, super great. The first time they put her under anesthesia on Thursday (for a bone marrow biopsy) they had to try three times to get the breathing tube down her throat because of her swollen tonsils, so this time they went straight for a laryngoscope and that worked nicely. I was expecting her to be gone two to three hours, but she came back in an hour, everything having gone great. She woke up from the anesthesia well. She had one more blood transfusion after that. Her IV’s had been a problem; for some reason, they could put stuff into her, but they couldn't take blood out, so they had poked her all sorts of different places all over her arms. It was good to have the central line because then the rest of the labs were easy to draw.

Friday night she was officially diagnosed with JMML, so on Saturday she started chemo: one dose per day for seven days. This chemo is not curative but is intended for maintenance and to relieve symptoms. And it worked really well: after just a few doses her breathing and snoring became noticeably quieter, and she started sleeping a lot, including through the night. Her appetite also became ravenous; she had no obvious nausea from the chemo. The doctors said her body was attempting to make up for lost sleep and nutrition.

The hospital experience at Dartmouth was good. The nurses were great, the doctors were great, everybody was kind, nice, sympathetic, and careful. They even changed Grace’s diapers while she was having the chemo, since our baby must be protected in utero from those toxic chemicals. David's House, the facility where Jon and I alternated staying (and got some much-needed sleep) is a beautiful place. So peaceful, and they have thought of everything you might need before you think of it yourself.

The hospital food was not restaurant quality, but it was definitely closer to home quality and far from cafeteria food. It was so nice to be able to call up and order food for Grace and ourselves and have it delivered. They took good care of us there.

By Monday, Grace was doing really great and so we were sent home to do the rest of the chemo on an outpatient basis. That meant driving an hour each way, every day, and spending hours at the hospital, but we were so happy to have the family together again.