*MightyMolly

Hello all! Here is a thoughtfully worded update from Emmy. It’s long. But so is little Molly’s journey!! 

We are sorry for the lack of updates. Life has only gotten hectic. We also didn't have any major break throughs until recently.

 

As many of you know, Mighty Molly May started having unexplained hypoglycemic episodes with losing consciousness and hypothermia last year.  This begun right after having Covid and a kidney infection. The kidney infection was treated days after it should have been due to doctor negligence. Unfortunately, Molly has continued to have hypoglycemia but has also developed new issues - the first was her heart starting to have relentless arrhythmias and more EAT. A heart device to constantly monitor her was implanted in October because of this and her pre-existing ectopic atrial tachycardia.

 

We have continued to not have answers and just manage Molly around the clock. We were told the gene mutation found most likely wasn't the culprit so we were back at the drawing board. We were also told it most likely wasn't insulinoma because she makes ketones when she gets hypoglycemia. The amount of pushing and arguing we have done to get her more testing is unreal.

 

To make a very long story some-what short, we pushed hard and finally got her in with other specialties that we thought should have a look at her. We couldn't accept "this just happens" given the whole host of issues. We have watched her overall well-being decline. Some days are great- running around with her brother & sisters and singing & dancing; other days are lethargic on the couch with no appetite.  She now gets bradycardia on top of everything else with bradyarrythmias. These are the days she can't do anything but rest.

 

We finally got in with immunology in May. We asked for this at the hospitals last year and were asked,"Why? What would they look for? This is endocrine.")

 

Well, they were wrong.

Molly has had underlying immunology problems as we suspected. We don't exactly understand it all yet but-

Her immune system is in overdrive, and is also trying to shut itself down. She has high markers of certain things like CD25 & IL10. She has too many of the cells that are "less helpful" and not enough of the good ones.

They don't know what is causing this yet. They did a micro-array that came back normal.

Now we sent out a target immunology panel to see if they could get hints from there.

 

Also, in reviewing Molly's labs, gram negative rods in her blood, hypoglycemia, syncope, and hypothermia from last year- her team says there is no way she didn't have sepsis from the ignored kidney infection.

 

In the talks with the specialists, there's a good chance that sepsis is the culprit for many things. It's also possible she had something pre-existing and sepsis (post Covid) pushed that into overdrive and has done permanent damage.

 

Fast forward to June 19th of this year- Molly had a fever of 103.5 . When no one else was presenting with a fever we decided to take her in.

The long story short of this is- Molly's blood levels are completely off now too. Her platelets, wbc, rbc, neutrophils amongst other levels were low (and some high) when they did the CBC. Other than the fever, there's been no other sign of infection. They admitted her because of the multiple poor levels.

When they re-checked these levels this morning to find that they had only gotten worse.

Five hours later, they checked them again to find they had once again gotten worse. Her platelets went down 15k in 5 hours today...and she isn't even febrile anymore. Her neutrophils continue to go down as well other things with variation.

 

Hematology did a blood smear but the results haven't been explained to us yet. We know there are four abnormalities but don't know what they mean yet.

 

They know she needs a bone marrow biopsy but her levels aren't safe enough to do the procedure right now.

 

Thank you all so much for being so loving and supportive. It means so much to us. Molly is a warrior and we will help her fight through whatever this is.

 

Hopefully we will have a better update soon. 🤞

 

Thank you from the bottom of our hearts,

The Shermans

 

 

P.S. never. stop. advocating. 💪 💜

Hello friends of the Shermans! I hate having to post this again. Little (MIGHTY) Molly is back in the hospital with a whole slew of new problems. I’ll share the update from mom below. But I know they’re going to need as much support as our community can offer. They’re back and forth from Boston and can’t work. They have a very long road ahead. If you can spare a few $ to help them out it would be so helpful! Also if you’re local and interested in helping with kids or meals or want Venmo info or all of the above you can reach out to me privately! Thank you friends and family in our community!! 
🩷 Darcie

 

We found out a few weeks ago that Molly's immune system is malfunctioning (to keep it short and less scary.) She also has new heart problems.

Yesterday we brought her to Children's for a fever (no one else is sick) and labs show that her levels have tanked since May 28th. They don't get why though because nothing is adding up for what they'd typically see with a virus. They know her bone marrow isn't working correctly but they don't know why. They have a lot of digging to do. The chief of the heart failure department is now overseeing her entire case and helping manage her team. The only good thing about finding this out is that we aren't being gaslighted anymore. Now they're really worried with us and are listening (most of them - we fired the last dead weight on the team two weeks ago and have now formed a great team.)

She can't go home until the try to figure out why this is happening - or at least get her levels to a safe spot.

So, we are once again your needy friends. If anyone has any time they could help with the other three kids please let us know. Even a few hour gaps to fill the days. I can add you to our group chat. We are so lucky the last 36 hours to have the world's best framily covering Toby, Bailey and Finley and keeping them smiling. We are looking for someone to sleep over tonight because I have thrown in the towel of doing all of the hospital stays alone. *it's too much for me,* there, I said it.

Please shoot me a message and I can add you to the group that is coordinating. Thanks a bunch-especially to my ladies that owe all the flowers, lasagnas and pies to. I love you guys.

Update from Emmy and Adam!

 

First off, we can't say thank you enough for all of your support.

Last week Molly was having a lot of dips. I was managing them --but it was becoming an around the clock thing. We decided it was time to take a drive to Philadelphia, figure out good neighborhoods to stay in and be nearby CHOP if she crashed. 

Two days after being there, Molly went from 179 to 38. I quickly lied her down when I saw the alert at 55. She only lost consciousness for less than two minutes this time because we grabbed the glucagon. 
The EMT's came and brought her to CHOP. 
She has been there for three days now on the pediatric floor. 

Today, the endocrine team finally made a plan. Molly is waiting on a bed on their floor to begin a 36 hour critical testing fast. This is the proper diagnostic test for insulinoma. 
They're also doing metabolic and genetic testing. She is in good hands with the kindest nurses you could ask for.

We are hopeful to (at the very least) to get hints to what is instigating all of this. These are the steps in the right direction we've been praying for. 

Words can't express how grateful we are for our support system and the community- who has become a huge part of our support system. 

The Cotuit Fire Department has not only saved Molly but has continued to support our family in so many ways. Molly & Toby idolize them and see them as the real life heroes they are. Thank you guys for having the biggest hearts and never clocking out. We've never met a more dedicated crew!

Our friends (especially you Darcie!) have selflessly gone above & beyond for Molly & our family. Total strangers have donated so much and sent the kindest messages that remind us daily of all the good in the world. 
If you're one of those "strangers", please email me your name & address so we can send you a thank you card. Mamasherman@icloud.com 

I hope my next update has even better news--but this is a pretty good one! Thank you all again. Molly is seriously so loved. 💙

With love,
The Shermans