Jo
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.
“WHAT?!”
“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.
June 15, 2017
Oh man, what a roller coaster! I'm sorry you're going through all that! I hope you get good news and a solid plan soon! What a strong little girl you have!
Sending many prayers to you on this crazy scary ride!!! I know mothers don't have favorite but blog readers do and Jolie has always been my favorite to read about. Such a little rockstar! Hang in there little one!
Oh my goodness! What a rollercoaster!! It goes to show you never know what people are dealing with behind the scenes. It always seems you have something going on and from all the fun family photos and gushing over Brady you would never know you were dealing with this on the side. I would be pulling my hair out and sitting in a puddle of tears. You are a strong woman and goes to show what a strong and loving family/community you have. I have been following you for years and love watching your family grow. My daughter is a few months younger than Baker and I'm in tears just reading about Jolie and how heart wrenching it must be. I can't imagine what your going through. You and your family are in my thoughts and prayers and I hope everything will be smooth sailing from here on for Jolie. Thanks for sharing your battles and showing the real side of life as well as the fun times. All the best!
What a terrifying ordeal! I'm so relieved that it's (seemingly) not going to be the worst case scenario. I'll admit: I was checking the blog/Insta multiple times a day for an update and hopefully some good news! It was just weighing so heavily on my heart. I know I don't personally know you – or your kids – but gosh, your Instagram the other day just hurt like it would if you were my closest friend. Continuing to keep you all in my thoughts!
Also: never, ever feel silly about advocating for your child! You didn't jump to conclusions for no reason. It was a very, very scary scenario and I think you 100% did the right thing!
Oh mama, I feel for you. We've been dealing with something for 6 months with our 1 year old and have an appt Tuesday with a hematologist/oncologist. These sorts of things shouldn't happen to our babies… I just tell my husband that all I want to do is live a boring life. Prayers for you and yours, hang in there, you're not alone.
Has she been tested for Lyme Disease??
http://www.childrenshospital.org/conditions-and-treatments/conditions/lyme-disease/symptoms-and-causes
What a nightmare you have been living!!! I'm so glad you got at least some answers, finally! I can't remember how old Jolie is but, at a young age, I was diagnosed with a benign tumor at the base of my skull/top of the back of my neck. The interesting correlation is it showed up once when I was really sick and then never went away. It never really changed except times when I was really sick it would get larger. Because it has never affected me otherwise and is in someway attached to my brain, doctors have refused to remove it. Interestingly though, when I was pregnant with my son, it shrank considerably and has stayed that way (he's 14 months now). Hopefully it's something similar for your little one!
I'm soooo sorry for all of you. The stress that an unknown health issue causes is overwhelming. Thinking and praying for you all.
Oh momma! I had goosebumps reading this whole thing. Having 3 kids, a newborn, going back to work and dealing with seems like such a weight to bear. I'm praying for Jolie that she'll make a full recovery and that you guys all continue to get the answers you need. Wish I could give you a hug and a meal. Keep us posted
OH SISTER! I am so sorry you have been through all this; but sounds like she is one the mend! We have been there ourselves! Our daughter was diagnosed with ITP almost 3 years ago and still not totally in the clear. Read about it http://carolinacolton.blogspot.com/2014/11/itp-sucks.html — There is NOTHING worse than a sick child. Gold really humbles you when this type of thing hits your home. I am so glad everything worked out! God is Good!
Wow, your family has been through so much in the last month. Prayers and hugs for Jolie (and all of you)!
So glad to hear some good news. As you said, what a nightmare as a parent! Keeping you all in my prayers! God is so good, all the time.
OH that is just horrifying! Your poor family, and sweet Jo especially! Hugs to all!
I'm so sorry that you've all experienced this – what a nightmare for you as a mom. Your sweet family continues to be in my thoughts and prayers.
I have been following you for years, my twins were born in January, a few months after yours! I feel like I know you and we're friends, lol! When I read your blog (at work) I had tears in my eyes for worry for Jolie, concern for your family and an inner dread I carry with me for the health of my own babes! Your family is in my thoughts and I hope you finally figure out what is causing Jolie's health concerns and she is healed! <3 <3 Lots of love!
I read often, but rarely comment, but had to on this post. Mama, as tears are running down my face, I am thinking of your family so much right now. I can't even form the right words to say, but you girls are freaking rockstars. You are so strong and so is Jo and I know you will find out what's going on and help her feel better. Hoping for answers sooner rather than later!
Sending lots of love you way! Praying Jo feels better ASAP and that you get answers. It's so hard to not have answers or a plan. Praying you get answers and a plan. I would imagine there's nothing scarier as a parent. Hugs friend.
I've followed your family, and this blog, for a few years now, but I've not commented on anything until now. I can't even begin to imagine the sheer terror and frustration you all are experiencing. Tell darling Jolie that she's such a strong little girl, like a superhero, and I'm so proud of her. I'm praying for answers too, because the fear of the unknown can sometimes be so much worse than the truth. You're all so strong and I'm praying that Jo feels better soon. There's a lot of love and prayers heading your way, all the way from Australia. Hang in there babe, you've all got this.
I've followed your family, and this blog, for a few years now, but I've not commented on anything until now. I can't even begin to imagine the sheer terror and frustration you all are experiencing. Tell darling Jolie that she's such a strong little girl, like a superhero, and I'm so proud of her. I'm praying for answers too, because the fear of the unknown can sometimes be so much worse than the truth. You're all so strong and I'm praying that Jo feels better soon. There's a lot of love and prayers heading your way, all the way from Australia. Hang in there babe, you've all got this.
I've been following your blog for years! I had my son March of 2013, so we were pregnant at the same time, and I think I found you at that point. I'm not too far away from you; in Arkansas! I've always loved following your girls (and now Baker and Brady). Reading the sentence about the doctors preparing you for the worst literally put a lump in my throat and tears in my eyes. You and your family are in my thoughts and prayers! Praying hard for sweet Jo!
My goodness, what a rollercoaster for your family. I am so sorry you all had to go through that; I could not even imagine. I am so glad that answers are coming to your family, even though it has taken so much worry to get there. I'm still praying for you guys, and you have one strong little girl on your hands!! <3
No advice, just all the mama-to-mama hugs. Things like this are insanely hard!!
Prayers for your family. I've endured the absolute terror of a health issue with my daughter and it pains me to know someone else is going through something similar. Prayers for Jolie's strong little body to clear up whatever the issue is and for doctors' wisdom to properly diagnosis and treat if not.
I had a lump in my throat the entire time I was reading this. I am so sorry your sweet girl has had to deal with all of this-but am so thankful you seem to have gotten at least some answers and elimination of those scary things!