7/13 A few days post biopsy

 Bri’s a few days into recovery now. Neuro & Endocrine both let her discharge from Children’s on Saturday which surprised the heck out of me. I knew the baton was now passed to me to be solo caregiver. Honestly I would’ve done anything to escape the 6 hour blood draws though. The poor nurse had to clean and apply medicine to her incision before we left. That was profoundly hard to watch. The incision was cleaned twice with peroxide, it bubbled the entire area up and melted the scabs off of her head. It set Bri on fire … I know it was so painful. 

It was a little overwhelming coming home with a very fragile, angry 6 yr old but we were both so relieved. We both fell asleep on the couch almost immediately. I let her be the rest of the day and night. I know she was in pain and irritable but refused any medication. Sunday was a little rough but she saw family, took her medication, and got a shower/bath. I was able to run some water over her incision and wash her hair but nothing more. I have had the worry of infection weighing on my mind. 

Monday - I noticed her perk up a little more today. I took a few pictures this morning and told her to smile, but she said smiling hurt her head. Her incision is gnarly, but healing nicely. We’re at the point now where it’s getting tough to keep her still… she’s active and restless. She wouldn’t take any meds again today but assured me that she felt good… specifically her words were “mom why would I take medicine if I don’t need it”. 

Left to my devices, when Bri is asleep, I scour the internet researching germinoma and LCH. Her neurosurgeon said that the biggest concern is that he didn’t get a big enough sample and would have to do the procedure again. Regardless of what we hear from doctors this week - it’s not going to be good news. Once again I have to ignore the inevitable for now and concentrate on her recovery. 

I am completely enamored by Brielle’s resiliency and strength. I will update after I receive word from the doctors.

Much love -Christi

Biopsy Day 7/9

 Where do I start. Lol. Bri is finally asleep so I’m able to gather my thoughts and reflect back on the day. Bri actually woke me up this morning before my 3am alarm, ready to go. I was dumbfounded at how good of a mood she was in and energy for days. It made me second guess my decision once again - literally while on the way to the children’s. 

The entire morning went according to plan .. no hiccups.  We got to see the surgeon right before and right after her biopsy. Everything went best case scenario, minimal bleeding, a few stitches, no drains. Happy is an understatement.  Her surgeon said he could clearly see the abnormality and was able to get 2 samples and get out.

Whenever we got to finally see her in PACU she was coming out of anesthesia. The incision is directly on the top of her head just to the right. Barely even noticeable. Bri has a weird reaction when she wakes up from anesthesia…she gets super angry, like Hulk angry (it’s common in kids).  She had that reaction today in recovery. I think the shock of that, and the day, and not eating - I almost passed out with all of the commotion and had to sit down. The wonderful nurse gave her fentanyl to calm her down. Luckily we got up to a room pretty quickly after that.

They are doing blood draws again every 6 hours for sodium checks. She has already said several times she is ready to go home. Yea, trust me, me too girl.  If Endocrine doesn’t keep her tomorrow I THINK we may get discharged. I can’t tell you how fascinated I am with this entire experience today. I’m certain we couldn’t get a better neurosurgeon than Dr Swift.  He is a genius. Also, I knew Bri was strong, but DAMN this is up there with unbelievable. I asked her if she was a superhero. There will definitely be some recovery at home so I hope I’m equipped for Bri’s powers that be.  

We will know results in 3 business days.  So, alas we wait again.  

I’m out for the day -Christi 

7/8 The day before biopsy

 The last 24 hours have been a roller coaster of emotions.  Bri had her pre-op yesterday and lab work which she handled pretty well.  The PA just went over a few things but left the hard questions for me to ask the surgeon tomorrow morning.  They sent us home with an antiseptic soap to wash her hair with tonight AND in the morning.  Yay (sarcasm).  I’ve been researching complications with the procedure and many are associated with infection.  So… I’ve been washing and cleaning like an absolute crazy person. 

We’re supposed to be there by 5AM, meet with her surgeon ~6:30, and her procedure is scheduled for 7:30.  I specifically asked the PA if she would have drains, and she will from her head.  BUT she said they wouldn’t send her home with them.  Even with nurse education, I’m not sure I could handle that.  They will have to shave a bit of her hair which is honestly the least of my worries - but the PA said that it wouldn’t be a lot.  

I received her labs back already today and her anion gap levels were low.  This could mean a number of things.  I do plan on bringing that one up tomorrow.  Everything else looked good.  The procedure should last around 1-2 hours according to the surgeon.  They have to do another scan and some other things before, so I’m preparing for at least 4 hours of torture in the waiting room.  

I am currently a walking panic attack so I predict I will be pretty scattered for the next few days.  My to-do list is overflowing but my spirits are high.  Bri has been completely normal, she is aware of everything that is going to happen.  She seems completely unbothered.  She did like the idea of “goofy juice” tomorrow morning to keep her calm.  Should be interesting to hear what comes out of her mouth.

I will post an update tomorrow when I can.

Much love -Christi 

6/24 Updates

Bri’s biopsy went well last week.  Minimal tears and no stitches!  We were supposed to change out her bandaid but I wasn’t allowed to go near her hand.  Finally 2 days post biopsy I had to force the issue, however while she was “doing it herself” the steri-strips stuck to her bandaid instead of her skin and revealed quite the blood clot underneath.  It scared her when she saw it.  After an hour or more of arguing, I was able to kind of get a new bandage half way on with the old one still there.  The next day the clot was gone and all of the dressing came off.  Didn’t seem to bother her.

Got the call yesterday that Bri’s skin biopsy results came back not containing LCH.  This means that the tumor biopsy is a “go” on July 9th.  I still have mixed feelings about brain surgery and the risks, but the more I research the more I realize that it could be much riskier if we do nothing.  Her procedure is officially 2 weeks from tomorrow.  I was able to finally get in touch with her Endocrinologist and she is giving Bri a psychology referral … I think that was way overdue, personally.

I’m still getting things in order for the 2 weeks she will be recovering.  Despite keeping tabs on my email, I will be taking off of work.  We’re having a family party for Bri on the 4th.  The hospital still has a strict 2 person rule, so everyone won’t get to see her until she comes home (except Mimi who will be there with us).  Huge bummer but completely understandable.  

I probably won’t have anymore substantial updates until the week of her tumor biopsy, and the updates will be much more frequent after that.  Until then we’ll just try to ignore the clock and enjoy summertime.

Starting the hashtag #briellethebrave

Signing off -Christi 

6/15 Updates

 We actually have quite an update today.  Bri woke up with a rash on her wrist.  I took some photos of it and sent it over to her Oncology nurse.  It reached the PA and Dr a lot quicker than I anticipated.  The PA called and said it COULD be an LCH rash and they want to biopsy it ASAP.  So… I circled the rash with a sharpie and they set her up with an appointment Thursday morning.  If we get a diagnosis of LCH from the rash then she wouldn’t have to go through brain surgery.  HOWEVER this would mean she has something called multi-system LCH.  Not many other details yet…other than it will be a punch biopsy and require a stitch or 2.  Piece of cake.  

Bri had a bout of mood swings today that was short lived but tested my patience.  We had a talk about her anger the other night and she told me that she wanted to be happy but she couldn’t stop being mad… also mentioned that it was like she had someone else’s brain.  I know it’s related to the tumor … specifically the location of the tumor.  

I’m finding it incredibly difficult to concentrate at work now.  I’m also still in a weird funk - not wanting to talk, insomnia, napping too much during the day.  I take meds and they do work, but every new day brings more unease.  I’m at that point now where it’s, please let’s figure out what the hell this is so we can get to the next step of this process… even though the next step sucks.  Treatment for LCH is a year of low dose chemo.  Treatment for germinoma is radiation and stronger chemo.  So there’s that. 

Bri understands more of what’s going on than we all realize.  I haven’t gone into detail about treatment and how that will impact her.  I figure - one bridge at a time and we’ll cross that one once we get there.  I’m just honestly trying to keep as normal as possible now, until it’s not.  

I started this blog because I haven’t really wanted to talk… but writing does help.

I also wanted to toss out a blurb that I appreciate everyone who has reached out ❤️ It makes my heart happy.

Much love -Christi 

The Catch-up and the Checkup

 I started this blog for a few reasons - to update, to vent, to document.  Brielle’s medical journey started around a year and a half ago in January 2020.  Before then she was 100% healthy no medical issues whatsoever.  That said, she has always had some pretty extreme mood swings and the tendency to rage pretty often.  When I say rage I mean clawing my arms drawing blood, inconsolable screaming lasting hours, complete inability to simply “snap out of it”, and throwing her head onto the ground full force.  I’ve been told that’s just age related tantrums and she will grow out of it.  

Fast forward to Jan 2020 she’s still experiencing pretty debilitating mood swings but they have taken different form and we have kind of just learned to cope.  Now, however, we have a new alarming symptom.  She is drinking and peeing constantly.  For some perspective,  she is going through a 24 pack of water every couple of days, and is having accidents in beds, cars, & public situations.  While this is happening she has stopped eating and started losing weight pretty rapidly.  She has sunken eyes and a general lack of happiness.  We started with her pediatrician who ran test after test but found nothing abnormal.  Were told that it was probably a lingering effect of a recent virus she just got over.  So we thought to give it time to run its course.  Over the next few weeks it’s not improving but getting worse.  Her pedi refers her to Children's Nephrology and they begin testing immediately.  All normal.  She was finally ordered a water deprivation test via inpatient at the hospital.  

Without going into much detail, this was a brutal one week hospital stay… oh by the way - during the beginning of a pandemic.  This is where we finally got a diagnosis but it was a devastating diagnosis.  She has central diabetes insipidus (water diabetes) and a tumor on her pituitary stalk - the stalk is the small transport line going from the pituitary to the hypothalamus.  This is located on the base of the brain.  At this point she has a team of doctors, Endocrine, Neurosurgery, Oncology, etc.  They were able to control the diabetes via medication but the tumor was given a differential diagnosis of germinoma or Langerhan cell histiocytosis.  Erm … cancer or autoimmune cancer.  The doctors recommended a biopsy via craniotomy immediately.  After coming to terms with so many blows in a 7 day period I apprehensively declined.  We did agree to a watch and wait method which would be a scan every 3 months.  Everything was literally going best case scenario for an entire year… up until her last scan in May.

The tumor has grown, intense mood swings are back, growth factor is slowing, and the biopsy is once again on the table.  At this point I have a feeling I’m delaying the inevitable and frankly I’m concerned if we don’t act it may leave her in a worse spot than before.  I agree to the biopsy but instead of the dreaded craniotomy, her neurosurgeon has suggested a procedure called a neuro endoscopy.  They will drill a hole on the top of her skull and go through the 3rd ventricle in the brain with a scope to find the tumor then perform the biopsy.  We’re told a couple days stay in the hospital and she should recover relatively quickly.  Given no complications.

The procedure is scheduled for July 9th.  The risks are there… the risks with no biopsy are there.  I’ve decided that our motto going forward has to be - get it, treat it, and move on with our lives.  She is still at the very beginning of her medical journey, and the things that she will endure are scary.  Realizing the mortality of your child is traumatizing.  BUT we are really looking forward to an improved quality of life for her and a normal life.  

I will also utilize this blog to post updates. 

Much Love - Christi