On Sunday we attended THON Family Carnival – it was so much fun! For those of you not familiar with the Penn State Dance MaraTHON (THON for short) you can read more about it here:http://www.thon.org/About.
THON has events for the kids throughout the school year. September we went to Harvest Day, October was the THON 5K, and this month is Family Carnival. Emily spent the day with her THON family, playing games, laughing, and running around. The carnival always makes us really excited for the upcoming THON weekend in February. You will hear many of the kids say “THON weekend is better than Christmas”. We agree. We can’t put into words what THON weekend is like – it’s magical. You have to experience it to understand. We can’t imagine Emily’s cancer journey without the help and support of THON!
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 🙂
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.