WTF (What The Fudge)?!

I should know by now not to post how great things are going because it seems like almost every time I do my next post says “we are in the ER again…”. We had to make an early morning trip to the ER Sunday because Emily’s symptoms returned – abdominal pain, nausea, vomiting, diarrhea and fever. We felt certain it was salmonella again. After being on an antibiotic for a month for salmonella she had just taken the last dose on Friday. It seemed a little quick that the symptoms had returned only 36 hours after stopping the medicine. We got to the ER and went through the usual – port accessed, blood cultures drawn (from her port AND one from her arm which she wasn’t happy about), labs, fluids, nausea meds, pain meds, stool sample, IV antibiotic. Then we found out she tested positive for C-Diff. WTF?! Seriously. Tom and I just look at each other sometimes and say W…T…F. (By the way, Emily thinks WTF stands for What The Fudge?! 😯 ).  She has had C-Diff once before in 2011 when she was still on chemo. C-Diff is a “bad” bacteria that grows when the “good” bacteria is depleted from your colon (such as when you are taking antibiotics for a long period of time – which Emily was). The “good” bacteria can usually control the overgrowth of “bad” bacteria such as C-Diff. C-Diff is treated with another antibiotic but can be difficult to treat, especially in those with a suppressed immune system. We felt certain she was in for a hospital stay, but a few hours later she was feeling better and was discharged. She slept most of the afternoon and by evening was up playing and eating Pappy Rob’s lasagna.

Sunday is the day we give Emily her SCIG infusion (sub-cutaneous immunoglobulins). Emily dreads it and gets very upset when it’s time to give it to her. We hook everything up, put the needle into her belly (it is a small needle and we numb the area so she doesn’t even feel it), turn the pump on and…nothing. The medicine will not go through the tubing. After an hour of trying to figure out what was wrong we finally gave up. The tubing was defective and would not let the medicine go through. We had to take the needle out and scrap the whole thing and we didn’t have any more supplies or medicine – another dose was scheduled to be delivered on Tuesday. It’s not necessary for her to get the medicine on exactly the same day every week, so it wasn’t a huge deal that she missed it, but it’s just another day she has to be stressed about getting stuck with a needle.

The supplies and medicine came yesterday, we open them up, and they sent the wrong needles (another WTF). Emily gets her SCIG using one needle and we were sent supplies for using two needles. At this point we didn’t want to wait for more supplies, so we told Emily we would have to do the infusion anyway and use two needles. We had to stick her twice, she was very upset, but we got through it and the SCIG is done for this week. She cries during it and says “when will all of this be over with?”  We have to explain that it is something she will do until she’s much older.

Then this morning we received a call that the salmonella also grew in her culture from Sunday. AGAIN. What the fudge is going on?! Her doctors are trying to come up with a plan. We know she will be on antibiotics again in some form which we are worried will cause a vicious cycle of killing good bacteria, letting bad bacteria grow, etc. etc. It is so frustrating. Yet, in comparison to what we have been through before, we know this is something that we can get through. It doesn’t make it any less stressful or frustrating though. Especially for Emily who is tired of not feeling well, visiting the ER, taking pills 4x/day and getting stuck with more needles. She asked me the other day “I thought you told me I was done with all of this?”.

At least for now, she’s feeling OK. Hopefully she will get started on an antibiotic later today before the salmonella gets out of control again. It’s possible there could be a hospital stay if they decide to do IV antibiotics. All we want is for Emily to feel better and to spend Thanksgiving at home with our families.

(We have received many messages about having Emily take probiotics and to eat a lot of yogurt. She actually has been taking Culturelle (which was recommended at CHOP) since she started on the month long antibiotic to help add some good bacteria back into her GI tract.)


SCIG and Gizmo | Update

Emily continues to do well! Today she finished the antibiotic that she has been on for salmonella (it has been an entire month already) – I guess we’ll see soon if the salmonella is completely gone. We sure hope so! The sub-cutaneous IG injections are still working well at home. We’ll have to take a photo of what it looks like when she gets the medicine. The medicine infuses under her skin and it looks a golf ball under her skin until the medicine slowly infuses and the bump goes down. She gets a little upset when it’s time for the infusion since it does involve a needle, so we tried to make light of the situation, and for some reason, the bump under her skin reminded us of the Gremlins movie when Gizmo gets wet and develops those lumps and baby Gizmos pop out. Well…she was NOT happy when we made that comparison. Apparently, she’s had some nightmares about the Gremlins movie that we did not know about and she hates the movie. Needless to say, we don’t mention Gizmo during her infusions anymore.

Last weekend we travelled to Hershey on Friday (this time is was for fun – not for a hospital visit!) where Emily saw her friends Kate & Molly. We took the girls to dinner at Friendly’s (a favorite because of the ice cream!) and a movie (Wreck It Ralph, which was pretty cute). On Saturday we travelled to Philly where Emily was checked out by Dr G. CHOP took some photos and videos of Emily and the check-up so they have footage to spread awareness about the CART-19 trial. They also took photos and video on the day of the T-cell infusion back in April, so now they have some “before” and “after” footage.

After that we went downtown to get ice cream and shop with friends. Emily spotted a gourmet dog store on the way to get ice cream so of course we had to stop there and buy treats for Lucy! We went back to CHOP to visit and have dinner with friends whose daughter has leukemia. Please pray for comfort for sweet Elena and her family.

This weekend should be a quiet one. We don’t have a lot planned. Emily has a birthday party to go to and we are celebrating Emily’s Aunt Brenda (Kari’s sister) and [soon-to-be Uncle] Tom’s engagement this weekend! We didn’t update much about two weekends ago when we went to Pittsburgh to visit with Aunt Brenda and Uncle Tom but we had a good time. We went to the Carnegie Science Center, saw a movie (Hotel Transylvania – also very cute) and Emily played with their two cats (she adores animals). We had planned on going to the Pittsburgh Zoo for Halloween weekend but it was too cold and rainy 🙁 When Emily found out last weekend about Aunt Brenda’s engagement she said “Oh good! I get to add Tom to my Uncle collection!” (??)

I just realized I posted a lot of normal “stuff” (other than the whole Gremlins/Gizmo thing which just sounds weird now that I read what I wrote about it. I should probably just delete that entire part so we don’t get messages about it!) and there wasn’t any mention of blood work! The last time she had blood work was on 10/19 and she doesn’t need it again until 11/21. That’s the longest she’s gone in between blood draws for more than a year. It kind of freaks me out not knowing what’s going on with her blood work but it’s also a relief not to have to be worried about it.

Like most families affected by pediatric cancer we want to help spread awareness about the disease. We are excited about an upcoming 3-minute documentary that is being produced about the CART-19 clinical trial (Emily is part of the documentary – they will be using some of the footage from CHOP). It’s part of a series of documentaries about innovations that are having a really big impact. The director of the film, Ross Kauffman, first heard of CART-19 when he read about the three adults who had been treated and he has followed the story since. We are looking forward to seeing the film, especially after watching another 3-minute film Ross directed called Wait For Me (you can see it here:

You can see some of the other 3-minute films by other directors here:

The doctors involved in CART-19 from Penn and CHOP have been interviewed for the film. The doctors have worked years, and some have worked most of their careers, getting the clinical trial to this point. We can’t wait to see the story that Ross tells about CART-19! It should be completed soon – we will let you know!!

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We Believe!
Tom, Kari & Emily


Welcome to Emily’s new journal!

Soon, this will be Emily’s new blog that will replace her Caringbridge site. The CB site has been great for more than two years but we wanted something new and fresh. We also wanted to be able to add more photos, post more content, and respond to your comments! Plus the site name is easier to remember (

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We Believe!

Tom, Kari and Emily