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 🙂

9 thoughts on “2-Year Appointment at CHOP”

  1. Awesome Emily. You guys should take a trip to Oahu. It cleared my breathing problems for the time I was there. Maybe can try a humidifier too. We are watching everything closely and are signed up for the adult treatment at upenn too. You guys should see about the people at memorial sloan kettering too. Good luck and thank you for the update. You give us hope.

  2. God Bless Emily, Rebecca and Rookie J and all the wonderful people at CHOP! Emily, you are an amazing little girl who has inspired many by how brave you are ! Such a wonderful report — thanks Kari and Tom !

  3. I am so happy for Emily and family 🙂 . I am a cancer survivor myself and I know how cancer affects a person in many ways that you always have it in the back of your mind but you also learn to appreciate the little things more 🙂 so in that way you look at life differently and the stuff most people take for granted you are so happy to just have a “normal” life again 🙂 I am happy to see you all going on and how Emily has been such an amazing young lady and all the lives she has touched and continues to touch at every opportunity!!! She is such an inspiration, you all are as a family an inspiration knowing the journey you all have been on. I know the journey hasn’t been easy and it has forever changed you BUT I know there must be a higher purpose for it all!!!! When you keep the faith and don’t give up, anything is possible!!!!! Miracles do happen but some miracles get overlooked or explained away by non-believers but “We Believe” is faith that opens up the impossible knowing that “with God, all things are possible”
    God Bless you all!!! Take it a day at a time 🙂
    Take Care
    Rose Knepp

  4. Emily, I am so happy to hear how well you are doing! Great Job! Our little Ethan (4) just went to Seattle last week and had an asphresis for the same treatment. We are hopeful. I am grateful for your courage to be a pioneer in this area of modern medicine. You are a trooper and an inspiration to many. It’s no doubt in my mind that you are fulfilling a very specific and special plan designed by a loving God. Keep going forward! Our faith & prayers are with you!

    Merrill Van Leuven

  5. Emma, So glad to hear of this great news! We Believe;) May God keep his Blessings on you and your family. Nice to hear of all your travels lately and the addition to your family. Great picture of you with Your Mom and Dad at the wedding. You are growing up so beautifully, school will be out soon, here’s hoping you have a splendid and safe summer;)

  6. Thanks so much for still sharing her story and helping others. .You all are a true Inspiration to so many people. .Continued prayers and Love…And forever great health. …I BELIEVE♡♡♡♡♡

  7. Love hearing how well Emily is doing! So
    glad she is doing well! Happy 2 Years Emily!!! Sending hugs from Jim Thorpe!

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