Emily’s 9th Birthday Week :: Part 1

Emily’s birthday was in early May and we started off Emily’s birthday weekend with another trip to Philadelphia. First, Emily was invited to visit the Penn Vet Working Dog Center. The center trains dogs beginning when they are just eight weeks old to search for victims buried under rubble after a disaster such as a building collapse. They train dogs for other purposes as well and the center is currently doing research on training dogs to detect ovarian cancer in women – very interesting! Emily had a chance to see how they train the dogs and how the dogs can find someone buried under a pile of rubble. The center has a pile of rubble that they use and one of the trainers or volunteers will hide in the rubble. Then they let one of the dogs try to find the person and see how long it takes. It was a great experience for Emily to see and she loved hanging out with all of the dogs.

That evening we attended a reception at the Penn Abramson Cancer Center to celebrate Dr. Levine’s appointment of the Barbara and Edward Netter Associate Professorship in Gene Therapy. Dr. Levine grows the T-cells in his lab for the T-cell therapy treatment that Emily had. Emily and a few of the adult T-cell patients were there to help celebrate. They knew Emily’s birthday was the next day and surprised her with a birthday cake(s). It was a very special evening to celebrate Emily’s birthday and honor Dr. Levine who is part of the T-cell team that saved her life.
Emily, Dr. Levine, and two adult T-cell patients
Birthday cake!Emily, Tom, Kari and Dr. Levine
The next morning – Emily’s 9th birthday! – we went to the Philadelphia Zoo and Emily got to feed the hippos. That was interesting. Hippos apparently are not very nice so we had to stand above them and feed them. Interesting facts about hippos: 1) Their skin secrets its own sunscreen and 2) Their skin also secrets it’s own antibiotic if they have an injury.
On our way home from Philadelphia we stopped at the Park Forest Middle School for the State College Mini-THON where they raised a total of $57,182.34! The kids raise money for the Four Diamonds Fund which supports pediatric cancer patients at the Penn State Hershey Children’s Hospital. It’s similar to the big Penn State Dance MaraTHON and the kids dance from 6:00 PM  – midnight. Emily always has a great time and it’s inspiring to see these kids raising money for pediatric cancer. There are mini-THONs held around the state of Pennsylvania all year and in other states now. If you would like to learn more and/or hold a mini-THON in your school (they are in elementary school, middle school, and high school) send us a message and we will connect you with others who have held mini-THONs. It’s also a great high school senior project 🙂
The McCauley Family sharing their son Lachlan’s cancer story.In the left photo is Isabella (holding Manna) – Isabella is a leukemia survivor after relapsing and having a bone marrow transplant. On the right is Emily (also hold Manna!). Manna is Emily’s BFF and they are in the same class. Manna’s family is also a Four Diamonds Family because her younger brother Corban was diagnosed with neuroblastoma – he has been in remission for several years now!
After the mini-THON we drove home and prepared for Emily’s birthday party the next day. This year she chose the theme to be Penn State colors and of course there was a bouncy house. She wanted a Penn State cake and the Sweet Art Bakery in Clearfield designed the cake for her and incorporated purple and butterflies. It was chilly and rainy for her party but she still had a great time. I found this “great” game idea on Pinterest where you put a shower cap on and spray it with whipped cream. Then a partner stands away from you and throws cheeseballs, trying to get as many to stick in the whipped cream as possible in a certain time limit. Total Pinterest Fail! Within 30 seconds the kids were spraying whipped cream all over each other AND THEMSELVES and then THREW cheeseballs at each other. It was not the calm game that Pinterest implied it would be. There was shrieking and food flying everywhere but the kids thought it was the best game ever and I guess that’s what counts. Some of the girls had to wash their hair and we had to scrub the whipped cream and cheese powder off their jackets. So parents if you are wondering why your child came home with wet hair and their clothes were covered in sticky orange stuff…this would be why.
Our weekend didn’t end there though! We will continue in the next blog post.

T-Cell Therapy and Emily in Forbes Magazine

There is an article in the May 26th issue of Forbes Magazine – it’s mainly about Novartis and how they are making the T-cell therapy a priority so that more patients can be treated. They included Emily’s story in the article which you read online here.

Forbes wanted original photos of Emily but due to our travel schedule they were having a difficult time scheduling a photographer for a photo shoot. So they hired me! They needed photos in 48 hours and of course the weather forecast showed pouring rain over the next 48 hours. We had a break in the weather right before school one morning where I took a few photos of Emily and Lucy for about 5 minutes before it started to rain again. We waited until later that evening when the rain stopped for about 15 minutes and I took more photos. I typically only take photos outside in natural light but I did manage to get some inside. They wanted photos of Emily doing every day things and didn’t want her looking at the camera. The first photo above is the one used in the magazine and the others are just some of my favorites!

I like this one in black and white.Of course most of the photos also had Lucy in them!

2-Year Appointment at CHOP

Emily recently had her 2-year follow-up appointment at CHOP. We are happy to report that everything looks great! She had blood work and saw Dr. Grupp. We were surprised to hear that they expect the modified T-cells to completely go away within the next 6 months. We know the levels of these cells have continued to get smaller and smaller, although we know there is enough still there to keep working because she doesn’t have any B-cells (B-cells are also a type of white blood cell. B-cells are the cells in Emily that turned into leukemia. The modified T-cells kill all of the B-cells in her body including the leukemia cells that were there). If you can follow all of that (!) then you are wondering along with us what will happen when the T-cells do completely disappear. It does mean that her B-cells should start return and we hope that they return as normal healthy cells. Everyone on the T-cell team feel that she has had the modified T-cells long enough that they killed any remaining leukemia cells. But again…Emily is the first patient in this trial and will likely be the first patient to have normal B-cell function return after having the T-cells for two years. Other patients in the trial have had B-cells return but the leukemia returns also; however, their modified T-cells only lasted a few months. Doctors feel the T-cells need to stay around for at least a year to make sure all of the leukemia cells are gone. No one really knows for sure though because this trial is still so new. Are we worried? We are a little. For now, we are not going to worry about it and will deal with things once we learn normal B-cells have started to return. If the B-cells return normal for a certain period of time (at least a year) then we will begin to talk about a cure. For now, we don’t say she is cured but that she’s still in remission. Emily is doing so incredibly well that we still just enjoy every day. She’s finishing third grade in a few weeks and looking forward to summer!

During Emily’s clinic visit we were followed by the camera crew for the PBS documentary The Story of Cancer: The Emperor of All Maladies that will air next Spring. I highly recommend reading the book – we can’t wait to see the documentary. The crew started following us as we ate breakfast at the hospital, then to her clinic appointment, and then to a visit with Dr. June and Dr. Levine.
Emily always requests Pete to take her blood – he’s the best!While waiting at clinic Emily sewed some pillow cases.

Emily spent some time with one of the oncology Child Life Specialists, Rebecca. Emily developed a special bond with her during her months at CHOP. Rebecca helped Emily deal with a lot of the yucky stuff during treatment and kept her busy and her spirits up. Emily has to visit Rebecca every time we go to CHOP. The crew filmed Emily and Rebecca doing crafts together.
Picking out her Beads of Courage.

While walking through the hospital Emily ran into one of the Pet Therapy dogs, Rookie J. He even has his own Facebook Page. Emily just adored him!

After the clinic visit, filming, and visiting, we drove to Wilmington, DE to meet Emily’s new cousin Baby Sam – he’s sooooo sweet! Emily doesn’t really like tiny babies although she did hold him for a few minutes. She says tiny babies are “boring and don’t do anything” 🙂 She said that about cousin Marlowe too when she was a baby but now that Marlowe is two-years old Emily just loves her.

The next day we were back at CHOP because Emily had appointments with pulmonology and immunology. We are trying to figure out why she coughs all night long and has a constant runny nose. All tests came back normal and they are contributing it to not having B-cells, so her immune system doesn’t function at 100%. She’s missing an immunoglobulin that B-cells make. She does get immunoglobulin replacement therapy every week (medicine that we administer through tiny needles into her belly) but this particular one can’t be replaced. It’s nothing serious – just annoying when she coughs all night. We are trying different nose sprays and antihistamines to see which one works best. Otherwise, everything looks fine.

After those appointments we visited with Dr. Siegel who works with the adult T-cell patients in the clinical trial. He showed us his clinic where adults get their T-cells removed in preparation for the T-cells to be modified. While we were there we met a patient getting apheresis – he was really happy to see how well Emily is doing after the treatment. Dr. Siegel also showed us a timeline he put together of the history of blood transfusion and therapy and it includes Emily’s photo! So cool that she is part of history.

Emily’s photo is also in a microbiology textbook! We were contacted a few months ago by the publisher for permission to use her photo.

Flat Stanley joined us on our trip – he was sent to Emily from her friend Eva in California so he traveled with us and we took photos of him to send back to her!

The following weekend, Emily’s Aunt Brenda got married! Emily was a junior bridesmaid in the wedding. It was a fun weekend!

Emily has done some more traveling since then – we will update in another blog post 🙂