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.
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!
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 🙂