Dec 29, 2016 Latest post:
Jan 22, 2020
On December 8th, Jillian woke up with a 102.5* fever and had trouble moving around. Her brother had been sick the day before, so we figured it was the same virus. We decided to take her into the walk-in doctor to make sure it wasn't strep. That came back negative and the doctor said that she was likely just having trouble moving around because she was sore from the fever.
By the 10th, she still wasn't walking and we were getting worried. Adam (dad) brought her to the ER where they spent 7 hours getting lots of tests done. She was released with a tentative diagnosis of transient synovitis (inflammation of the joints from a virus), but they didn't feel super comfortable with that diagnosis because it is usually something that occurs in the hips and knees, while her issues were with her ankles.
We had strict instructions to follow up with her pediatrician on Monday. While there, they took a lot of blood for testing. We didn't see her regular pediatrician (Dr. S), but we saw another in the practice (Dr. J). She was very thorough and we talked about the possibility of rheumatoid arthritis. Jillian's iron was very low, and I could see that worried the Dr. We got a prescription for an iron supplement and were told to go to the ER of she had any fevers or got worse.
Of course, she got a fever the very next day and it didn't start until the evening, so we headed back to the ER. Early that day we heard that it was most likely not rheumatoid arthritis. At the ER they took a lot more blood and that was where we first heard about the possibility of leukemia. They talked about it like it was a shot in the dark, which was probably good because it saved me a little worry during the long wait. Her iron was still very low, and they were still concerned about it. But we were sent home with a new tentative diagnosis of reactive arthritis (similar to the transient synovitis, but it just affects the joint differently).
Followed up with Dr S on Thursday. He has been our pediatrician since Elliot was a baby and it was so good to know that he and Dr J would both be working hard to figure things out. The leukemia test came back negative. It was just a smear that represents a small amount of blood and they look for lymphoblasts to see if the leukemia was in her blood. I had become more and more worried about leukemia (thanks to my google medical degree and the hours spent devouring every piece of info on her MyChart). So I was very relieved to hear that. Iron was still low, CBC results were all still wonky. But her platelets had been extremely high before and were now in the normal range, which was something positive to look at.
She also started standing that day, which was huge. By Friday she was taking steps while holding onto things. We saw Dr J again on Friday. Iron still low, CBC still wonky. But since her fever was gone and she was starting to walk, we were told we could wait a week to go back for a follow up unless something got worse.
Our week went well, we got ready for Christmas and she was walking around and the fever stayed away. Went back to see Dr S on Friday (the 23rd). Her iron came back within normal range and we were all very happy that it went up that fast. Her CBC was still funky, but Dr S said that as long as she seemed healthy, that wasn't a big concern and he would see us back in two weeks.
We had Christmas and she did great. She was a little more grumpy and out of it than normal though. We spent Christmas Day with Adam's family and she got another fever that afternoon. It was around 100, so we tried not to be too concerned. But after we got home the next day, her fever went up to 103. So on December 26th, we were off to the ER again.
It was insanely busy and we had to wait a long time to see a doctor. But once we did, things moved fast. More blood and more urine. Her iron came back even lower than before. They think there may have been an error on the test where it came back within normal range because they said it was highly unlikely that it went up that high and then back down again so low in such a short period of time. So we were admitted. As we were getting ready to go up, I asked the doctor about rechecking for leukemia and she said they already had the test going again. What I didn't realize is that they were putting us on the cancer and blood disorders floor. So the doctors already had a very strong suspicion.
We were told she would have an MRI and chest X-ray the next day. I tried to sleep and finally fell asleep around 6:30am. I woke up at 8am to a resident telling me that her iron was down to 4 (normal range is about 11 and up). They were cancelling the MRI and she would be getting a blood transfusion. He seemed very worried and that was basically when I lost it. I called Adam to tell him to come quick (he was already getting ready to head over, but had the boys with him). Our amazing neighbor watched the boys for us and he got there just before the doctors came in to talk to us.
They told us that her blood smear had 2% lymphoblasts (again, the cancer cells) and that leukemia was the most likely culprit. We had to do the blood transfusion first and then they would do a bone marrow biopsy.
After the biopsy when the oncologist came to talk to us, she told us that Jillian's bone marrow was kind of thick and sludgy. She had a hard time pulling out enough fluid from one side (it's in her hip area) and so she had to try on the other side. The thick sludgy bone marrow is indicative of leukemia and she told us that she suspected it would be B Cell ALL, which is the best case scenario. We had to wait for the biopsy to come back for a few hours, which ended up confirming that diagnosis. We are still waiting to hear about some chromosome typing that will help us learn if she has any chromosomes that will either make it harder or easier to treat.
The chemo plan is to start ASAP. She will get different drugs over the first few days in the hospital, and then she will be sent home. We will be going into clinic once a week for chemo. After a month of treatment, she will have another bone marrow biopsy. If it is working, the marrow will be negative for any leukemia cells. There are also a few other markers they will look for to know how effective it is. Then we will reassess and know what we are in store for during the next year or so.
Our girl is strong. She is fierce. She is stubborn as hell. She will beat this. The doctors believe that this will be just a bump in the road of a long life for her, and so we are choosing to believe that too.