Emily has been doing well the past few weeks! Yesterday was the last day she took antibiotics for c-diff and salmonella. The cultures last week came back negative for both c-diff and salmonella, so we hope they are both gone for good! On the 10th day she was taking the antibiotic, I dropped one of the pills and happened to notice the dosage engraved into the pill was 2x more than what the prescription said it was supposed to be. There were calls to the pharmacy, her doctors, and even the poison control center to make sure the dose wasn’t toxic. Thankfully it wasn’t, although it was a large dose for her age and size. We were most worried about the effect it could have on her kidneys but so far everything seems fine. We were also reminded of a lesson we learned very early on in Emily’s treatment – always double check every medicine before it’s given. We are usually very good about checking prescription bottles, IV bags, syringes, etc. but didn’t check this time.

Emily’s white blood cell count and ANC were both low at an appointment with Dr. Powell the day before Thanksgiving. Since she was neutropenic he suggested we avoid crowds to try to lower her risk for infection. Our family Thanksgivings were both smaller this year, so we were able to avoid crowds for the most part; however, we did leave one Thanksgiving dinner early because a few people there had a stomach virus. Emily was upset but we have to protect her and getting a stomach virus when she’s neutropenic and being treated for c-diff and salmonella would have put her back into the hospital. We still need to worry about Emily being exposed to germs and getting sick. We don’t want to offend anyone but it’s important that we still try to protect her as much as possible, so we avoid anyone who is sick or anyone who has been around someone recently ill. If Emily does get sick, it’s not as serious as it once was, but because she still has her mediport and her immune system is slightly suppressed, a fever still means an ER visit and a possible admission depending on her white count.

We repeated the blood work this past Thursday and her ANC was 1200 so slightly better. The “magic” number is 1000 (an ANC over 1000 is considered to be good). Her white count is still low but increased a little since last week. She goes back for another appointment and blood work in State College the end of December. The sub-cutaneous immunoglobulin (SCIG) she gets weekly is going well at home and we like this SO much better than the IV immunoglobulin (IVIG). The past few times we’ve given her the medicine (we have put a needle into her belly and let the medicine infuse with a pump) she hasn’t cried – we knew it would just take a little while to get used to something new.

Emily had her “third” 1st haircut last week! It just needed trimmed since she’s going to grow it long (and she insists she does not want bangs this time).

There will be some media coverage coming up about the CART-19 clinical trial next week! We will post links when things are published or aired. The media cannot release their reports until the research has been officially presented at a national meeting next weekend. We went to CHOP last week to do another round of interviews and photos while Emily was checked by Dr. Grupp. We are talking about the clinical trial to help spread the word that it is available at CHOP. Emily’s type of leukemia (acute lymphoblastic leukemia) is curable in about 90% of children; however, if a child relapses (like Emily did) it can be very difficult to cure. We are hoping to let others know that this trial is available but parents need to know about it and consult with CHOP early (as soon as relapse occurs). We are excited about this opportunity and feel that by sharing Emily’s story we can provide hope to other families and create more awareness for pediatric cancer in general! The short documentary by Ross Kauffman about the CART-19 trial (Ross won an Oscar in 2005 for his film “Born Into Brothels”) will be completed soon too – we can’t wait to see it!

We enjoy reading the comments we get on our posts! Tom and I have a little competition between us to see whose posts get the most  “comments”. I’m pretty sure Tom has won every time though. As one person put it “Tom, you post happy, inspiring things. Kari, you post a lot of boring science crap I don’t understand.” LOL! I went back through some posts and this is so true! This tells you a little about our personalities but we think we balance each other out 🙂

Recent photos:

1. Emily and cousin Marlowe have a holiday photo shoot;
2-3. Cooking dinner at Pappy Rob’s house;
4. Emily and Lucy;
5. Emily has an interest in photography and is learning to use my DSLR. She’s actually very creative at taking photos at different angles!;
6. Holiday puzzle – complete! We love puzzles!;
7-8. CHOP gets a lot of famous visitors at The Voice radio station (which is located in the hospital). We were walking past the radio station and we noticed there were posters going up for the movie “Santa Paws 2”. Emily LOVES the Santa Paws movies and we had just watched the new Santa Paws 2 movie a few days before. She was all excited and said “the dogs from the movie are coming to visit!”. I told her no, I’m sure the dogs are not visiting, they are just promoting the movie. Well, of course right after I said that, a man comes out carrying one of the dogs from the movie! Emily was sooooo excited (“See mama, I TOLD you they were visiting!”). She got to meet the dog and sit in the radio station while the little girl who is in the movie was interviewed;
9. Emily thought a naked Barbie would be a nice addition to the tree this year. Classy.;
10. THON PRSSA visit;
11. Ed Blakely (the officer from NY who came to visit Emily and swore her in as a junior officer over the summer) got a tattoo of Emma’s name!! We think this is so awesome!;
12-14. The beautiful quilt was made out of pillowcases! At both Hershey’s Children Hospital and at CHOP, the kids get a new “fun” pillowcase when their bed is changed every day. The pillowcases are made and donated by organizations and individuals, so the kids don’t have to use the boring, scratchy hospital pillowcases. I estimate we probably had about 100 of these just sitting at home, so Nanny (Tom’s mom Sandy) and Aunt Jenny sent the pillowcases to Joan Wobbleton, a quilt maker in North Carolina. Joan knew that Emily likes pink, purple, dogs and butterflies and she incorporated all of these into the quilt. She also sent a list of fun things for Emily to find in the quilt!;
15-17. I asked for photos of Penn State Dance MaraTHON canners a few weeks ago – here are some that I was sent! Many of you said you donated – thank you so much! We attended a THON event yesterday but I’ll post separately about that because we have a lot of photos. Usually there are four canning weekends for THON, but this year they have cancelled the January canning weekend for safety reasons (winter weather). Although the canning weekends are over for this year, you can still donate online at www.THON.org. Some of the money from THON was used to build the new Children’s Hospital at Hershey. We haven’t had a chance to see it yet but we’ve heard it’s amazing – it officially opens in January;
18. Playing Go Fish with THON family member.

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: http://www.youtube.com/watch?v=TL9L2s0rGuE).

You can see some of the other 3-minute films by other directors here: http://focusforwardfilms.com/

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!!

Thank you for continuing to follow and support Emily! Our community and followers mean so much to us ♥
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 (www.EmilyWhitehead.com).

Comment and let us know what you think (if you click on the post title it brings up the comment page)!

We Believe!

Tom, Kari and Emily