FIRST of all. a GIANT thank you to everyone that has called, texted, emailed, messaged, and commented on social media since we briefly shared whats been going on with Jolie. its been the most humbling experience walking through this process of trying to figure out what in the world is going on with my child, and I’ve gone from crying out in hysterics to fuming angry about all this. trying to process it all and then having to explain to those that are concerned is overwhelming because honestly I’m at a loss for words to adequately express what the plan is at this point.
I guess I’ll start from the beginning?
this started probably about 4 months ago. Jolie had been having random fevers, virus like symptoms off and on.. and sleeping NON-stop. she would take two or three naps/day along with sleeping about 10-12 hours at night. since she was in preschool I chalked it up to being a stomach bug and she would get over it.. and she would. symptoms were always short lived. about a month ago we were visiting my parents and sweet Jolie was, once again, with diarrhea and her fever was getting up pretty high. we were treating it with Tylenol and Motrin, rotating it every three hours or so and it would come down, but sure enough, within 3 hours she was spiking 102 once again. we were getting ready to go to dinner and Jordan was brushing her hair and rubbed his hand across her neck and she winced in pain.. thats when we found it.. the GIANT lump on her neck. it was huge and her neck was red and it clearly hurt to the touch. we sort of panicked and called our pediatrician to ask about taking her to the ER or seeking guidance for what we should do.. and they told us that it was not a big deal and to come in on Monday. So, Monday, May 22nd to be exact, we went into the pedi’s office and saw the nurse practitioner (that we love!). this was day 5 of persistent fever (running 102-104) and I was done.
“check for everything, and I mean everything.”
so they did. and everything came back normal.
no mono. no strep. no infection.. no leukemia.
yes, I made them check THAT. I felt like something wasn’t right and I didn’t want to be back there in months with terrible news being delivered when I should have listened to my gut instinct.
her labs looked relatively normal. of course a little elevated on her white cell count because she has been constantly fighting fever. but otherwise, nothing concerning at all.
“its a virus.”
so, assuming this lump on her neck was infection related to the virus she had, she was put on a really heavy and strong antibiotic (clindamycin). she took 14 days of antibiotics that basically tore through her GI and caused even more GI upset than she was already having in the first place. she wasn’t eating too great, but she had stopped running fever, so we were on the right track. she finished her medicine on a Sunday and on Wednesday she spiked 102 fever (again) and I couldn’t get her fever to come down below 101 for 12 hours, even with cold bath and medicine. I called the pediatrician and came in the next day.. to see Dr. Butler. she gave her a full exam after we walked her through the last month of concern and decided that, along with more lab work, we needed to get a sonogram of her neck since it hadn’t changed at all in size, even with heavy antibiotics.
she also checked her thyroid and about a billion other labs and tests to rule out a million things as to why this could be happening.
we sent off a stool sample and did blood and urine cultures.. we did the works.
that night we were up all night long with Jolie. she had started throwing up again and couldn’t hold down medicine to bring down the fever that had gotten up to 104. I was trying to dress her to load her up to go to the ER at 2:30am and she was like a potato sack. she wouldn’t move or respond to me because her little body was just exhausted. finally, after several attempts we got her to hold down meds for a half hour that brought her temp down to 101. I’ll take it.
we were able to get into the hospital to do the sonogram on Friday afternoon and we were expecting to just wait and hear on Monday from the doctor about the results. we had plans to head out of town early on Friday morning for Jordan’s grandmother’s celebration of life that was on Saturday afternoon. Butler really wanted us to get this sonogram done before going out of town, so we loaded up after the test and headed out.
our HOPE was that this sonogram would show that the lymph node was fluid filled or an infection causing the fevers and could be treated with medicine.
this sweet pic was taken right after everyone got up on Saturday morning!
we headed downstairs to eat breakfast at the hotel.. I left my phone in the room and completely forgot about everything that had happened the day before.. aside from Jolie waking up with a fever AGAIN.
just after I got everyone situated with their plate o’ pancakes Jordan got a call. I quickly realized who it was and I just sat there in silence trying to read his face to see if I could get some kind of idea as to what was being said on the other end.
he hangs up and doesn’t even say anything. just starts crying.
“the sonogram was abnormal. its not fluid filled and its not an infection. she has a large 5cm mass on her right side and the other side is abnormally small and appears that its not even functioning..”
the next several hours are a complete blur.
we were told to leave as soon as we could and head back to Dallas for a CT scan. we quickly packed everything back up, left Parker and Baker with BB and Papa and took sweet Jolie and Brady and booked it as fast as we could back to the hospital. since it was Saturday we had to register through the ER and then finally made our way back to radiology.
we spent the next two hours waiting. Jolie had to drink the oral contrast, and getting a little person to drink THAT much was near to impossible. but I attempted to make it into a game and we got enough down so she could go back for the CT.
she had both oral and IV tests run and the preliminary results were CLEAR. I was so thankful.
they had basically prepared us for the absolute worst: the lump on her neck is actually lymphoma and the nausea and vomiting and repeat fevers were all a result of the cancer spreading to the nodes around her GI track and in her tummy.. and that we would leave straight from there and transport Jolie to Children’s Dallas where she would be admitted to the 6th floor oncology unit.
lets just go ahead and file that under: parental nightmares you never want to experience.
after the hour long CT scans it was finally time to leave. since the scans came back clear (read by an adult radiologist) and we were free to go home. we still felt a bit unsure about the scans because the CT showed all clear or everything.. even the lump on her neck. no one, not even our pediatrician relaying this information to us really understood that because we can see it and feel it. something was missing. the pedi scheduled us for 12:30pm on Monday to come in for another exam and to produce a game plan. she also had scheduled a conference call with the pediatric radiologist at the hospital to officially walk her through Jolie’s CT scans.
either way we were happy to be on our way to spoil Jolie rotten for all that she has been through that day. we took her to build a bear, claire’s for some new jewelry, and then out to dinner for chips and queso at 9pm. it had been a long day and everyone was so exhausted. I cried myself to sleep with Jolie in my arms. I couldn’t let her go!
Monday morning came, along with my first day back at work (talk about terrible timing for all this), and I got a call from Jordan.
“why is he calling me.”
apparently when the pediatric radiologist read the scan that morning the mass WAS there.. the scans were just really poor quality because she was moving around.
um, yes. she’s four. she’s terrified. and she was bawling her eyes out.
the adult radiologist that read the scans on Saturday missed it. our 12:30pm pediatrician appointment was changed to a 2 o’clock appointment with an oncologist downtown.
once again with the emotional roller coaster of confusion and fear..
the appointment came and I felt like I could just hurl everywhere. I hadn’t quite closed the door on the possibility of it being “the C word”, but the unknown was debilitating. I hadn’t slept in like a week which felt like a month. my body hurt with anxiety and I just wanted answers. Jolie was scared and had yet to understand what was happening or why she was there. the moment we were admitted to the exam room she started crying.
“no more doctors, daddy“
all I could think was that this was just the beginning..
the hematologist/oncologist came in after what seemed like an eternity of waiting and she did a full exam on Jolie, just as our pediatrician did the week before. she mentioned that the mass was elastic and not affixed. she also mentioned that she could feel protruding lymph nodes all over Jo’s body, which she reassured us that was normal for some people.
“I am confident to say that this is benign. that doesn’t give you answers about the fevers and GI issues ..but I do not believe this is lymphoma simply by the way it is presenting itself.
I could have kissed her! she then proceeded to schedule us for a follow up appointment in two weeks.. more blood work to see if anything has changed and assuming that if the lump doesn’t reduce in size then we will be going the MRI/biopsy route. it hasn’t changed in a month, even after heavy treatment with antibiotics, so I foresee the next appointment ending with a scheduled MRI, but we shall see!
Tuesday came and my phone rings again.. its Dr. Butler with more test results. apparently the stool sample we sent out came back positive for EColi. most likely picked up from a restaurant, Jolie’s nausea and vomiting could be related to this.
so, now were assuming the lymph node and throwing up and diarrhea are completely unrelated?
I guess. can you get fever for a month from a food borne illness? google couldn’t give me a straight answer, so I dunno. to be honest I’m still trying to process everything and its all happening so very fast. I swear everyday we are getting different explanations and plans of care. Butler didn’t want us to be sitting idle for 2 weeks, so in the meantime we are treating Jo for the EColi with more antibiotics and probiotics..AND eliminating dairy.. which totally sucks.
all I know is this girl is a freaking rockstar. she’s been such a trooper. never complained. and seems to keep her spirits even with all this mess, and while still feeling like total crap.
so, now we wait some more.
hoping it all comes to the surface with facts and a solid treatment plan. the lump still isn’t fluid filled or infection, and I feel like no one really knows what is going on with our girl. I admit to feeling a little silly and mislead for freaking out over something that wasn’t there or is something completely different.. I wanted to scream for joy and anger when the oncologist settled our greatest fears.. but y’all I’m so relieved.