(Mother’s journal entry) Last weekend, on Saturday evening Madeline suddenly just wasn’t herself. She cried during bath time and wanted to be put straight to bed with no stories. She is normally very particular about "one book in the comfy chair and two books in bed!" I was secretly excited about getting both kids in bed and fully asleep before 7:30 so I didn’t give it much thought.
On Sunday morning she woke up with a fever. I knew it was high just by feeling her, so I gave her some Tylenol and then some more Tylenol and then some more Tylenol. Around 4pm I took her to urgent care. They took her temperature and it was 104.7, they tested her for the flu and strep, they were both negative. They gave her some Motrin and sent us to the ER.
By the time we were seen at the ER her temperature was down, they did a quick exam and decided it was an ear infection and sent us home with a prescription for antibiotics.
The next day (Monday) she still had a fever and we gave her round the clock Tylenol. She started complaining of her legs hurting and we kept giving her Tylenol. In the evening her leg pain seemed to escalate, and I thought she must be cramping badly because she hadn’t had anything to eat in 2 days and barely anything to drink during that time. So, we took her back to the ER. They agreed it was dehydration and gave her some IV fluids and told us to add Motrin to the rotation.
On Tuesday her fever finally seemed to be gone, though we were giving her Motrin and Tylenol around the clock. She kept complaining that her legs hurt and spent most of the day on the couch. She was just getting over a terrible fever, it made sense that her body ached. That night we all barely slept as Maddie’s leg pain become unbearable. She could not get comfortable and wanted us to move her from the couch, to her bed, to our bed, back to her bed, then back to the couch. Nothing was helping.
After a completely sleepless night Eric took Madeline to the pediatrician (Wednesday). Right before she left we filled her up with Motrin and Tylenol and while she screamed in pain the whole way there she somehow made a miraculous recovery in front of the doctor. Luckily our pediatrician is amazing and decided to still run some blood tests. He called us later that evening and mentioned that some inflammation markers were higher than he would have expected, and we should bring her back in the morning.
After another sleepless night full of screaming, crying and carrying around the house I decided to stop giving her Motrin or Tylenol at 6:30am. Something was very wrong, and the doctor needed to see it at its worst. She screamed the entire way to the Dr for our 11am appointment (Thursday), and after a few minutes with the doctor he agreed we needed to go back to the ER. He prepared me with all the test results and his notes and called ahead to the ER to let them know we were coming. The staff rushed us quickly to a room and began more testing. They took more blood, did x-rays, and gave her some morphine - after 3 days, she finally slept. They told us they were looking for a joint or bone infection, the orthopedist gave us a long talk about all the different kinds of infections, but they were surprised how well she was moving her leg even though she was clearly in a lot of pain. When the blood test came back again with elevated inflammatory markers (supposed to be 0.2 and it was 8.9) he let me know she was not exaggerating her pain.
They let us know they would make her comfortable for the night and do an MRI in the morning. They gave her IV Motrin and morphine as needed and she slept pretty well with only a few episodes of severe pain/screaming.
On Friday, we waited most of the day for an MRI, they finally took us around 2pm. Maddie was in and out of pain all day. They sedated her for the test and told me to be back in 45 minutes. I set my alarm and brought Eric back to the waiting room with me. We waited for 30 mins and then asked how much longer, they said 30 more minutes. 30 minutes passed, and they told us to head back to her room and that they doctor wanted to talk to us while they were finishing up.
We went to our room and waited for the Dr, she came in around 5pm with a nurse and a few other people. They let us know that they found a mass during the MRI, a large mass in her pelvis and that the oncology team would be down to talk to us soon and that they would be moving us up to the cancer unit shortly.
The oncologist came and spoke with us for hours. She explained that they believe Madeline has a solid tumor called Ganglioneuroblastoma, a form of cancer. That it is wrapped around her nerves which is probably why she is in so much pain. It has likely been growing there for ~1.5 years. They needed to confirm this with more tests, scans to see if it has spread anywhere else, biopsies of the tumor and bone marrow, more blood and urine work.
All of this will probably take a week before we are able to even talk about next steps which will likely include surgery and chemo. The tumor is so large and wrapped around nerves and vessels and close to the spine that it will need chemo to shrink it and even make it operable.
Saturday, we got the first bit of good news, the CT scan of her chest came back clear. She is on a morphine drip (PCA) and resting comfortably 90% of the time.
Since this journal posting Madeline has finished her 4 rounds of chemo. (As of 5/15/2019). A young Georgia soccer player who is in an important battle off the pitch was honored by his school's varsity team last month.
