Emily "Emma" Whitehead :: My Journey Fighting Leukemia » My journey fighting childhood cancer.

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copyright-kari-whitehead-2012-6060PINIMAGEYou can send Emily mail at THON for Kids Mail Call! (directions below)

In 22 days we will join 15,000+ Penn State students and other pediatric cancer families for the Penn State Dance MaraTHON! THON is magical and it’s our favorite weekend of the year. For us THON is much more than the money the students raise – they have become family. THON students are amazing and work incredibly hard all year long in their fundraising efforts and bring HOPE, JOY, LOVE, FUN, and SMILES to the kids fighting cancer. We will be posting more about THON over the next three weeks and sharing THON photos and our favorite THON memories.

We are part of the Adopt-A-Family program which means our family was paired with a PSU THON organization that wants to provide support and encouragement to us. Emily was ‘adopted’ two plus years ago by the Penn State Public Relations Student Society of America – PRSSA. They are the BEST! Our organization chose two members to dance in THON this year and they are: Chelsea Slavin and Devin Schiaffino! It takes a lot of physical and mental toughness to get through those 46-hours but we know Chelsea and Devin can do it – they will be EMMA STRONG. Over 700 other Penn State students will be chosen as dancers for the 46-hour no sitting, no sleeping dance marathon to raise money for pediatric cancer and we will be there all weekend to support them.

You can send mail to Emily at THON for Kids Mail Call. What is Kids Mail Call? On Saturday night of THON weekend, Emily will go up on stage and get mail sent to her from students, friends, and families!

You can send the mail to:
Emily (or Emma) Whitehead
c/o THON Kids Mail Call
210 HUB
University Park, PA 16802

You can also send mail and packages to Emily’s dancers to support them through the weekend! Let them know you are a friend of Emily’s. You can send our dancers mail at:

Attn: Mail Call
Chelsea Slavin – #297A and/or
Devin Shiaffino – #297B
210 HUB
University Park, PA 16802

Mail must be postmarked by February 5th. If you work at Penn State you can send the letters to 324 HUB and packages to 327 HUB. If you are not sure what to say, draw a picture or say a couple of words of encouragement! Read here for more info on what to put in letters and packages.

To support THON please visit www.thon.org (you are asked to choose a THON organization to credit – Emily’s org to credit is: Public Relations Student Society of America). All money from THON goes to the Four Diamonds Fund, which directly supports pediatric cancer patients at the Hershey Medical Center in Hershey, PA. Families supported by the fund are referred to as “Four Diamonds Families”. Some of the money goes directly to the patients and their families in the form of gas coupons (which was SO helpful to us back when we had weekly 2-hour round trips to Hershey for Emily’s appts), food coupons to use at the medical center during long stays (also handy since we lived there for months last year), prescription copays, and offsets the cost of treatment that insurance does not cover. The money also helped build the awesome new Children’s Hospital at Hershey Medical Center which opens this month.

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I wasn’t even going to post about this but it’s part of our journey and we’ve always posted everything that happens. We ended up taking Emily for blood work yesterday just to make sure everything was OK because she had a lot of bruises, nosebleeds, and complained of leg pain. Those have always been her three classic signs that IT was back and we worried because nosebleeds and leg pain are not normal things for Emily. Her blood work came back totally fine but all three of us were really worried until the results came back.
On Friday, I noticed Emily had a few more black and blue marks than usual. It was not an excessive amount of bruising and the bruises weren’t particularly big or scary looking, but they were in odd places such as on the inside of her arms, her back, and her upper thigh. She had some on her knees and shins but she always seems to have bruises there. I scan Emily’s body for black and blue marks all the time. I can’t help it – I just worry so much. I do worry a little when I notice a large bruise or if she seems to have more black and blue marks than usual but I watch them and if they start to go away over a few days then I know I don’t need to worry. But on Saturday she woke up with dried blood under her nose. She has not had a nose bleed since she was first diagnosed. Odd bruising AND nose bleeding? This raised a red flag but I thought I would just wait and see and try not to worry about it. Then, we were on our way home from THON Hoops on Saturday and she mentioned she needed to get out of the car because her legs hurt. Then, on Sunday she woke up with more nose bleeding. OMG. I can explain away one symptom and usually two symptoms but when she had THREE relapse symptoms I couldn’t ignore it. Bruising, bleeding, leg pain. I could not believe I was back in that horrible place of wondering if IT had returned. Tom relayed the info to Dr. Powell and Dr. Grupp and they both agreed with us that she should get blood work Monday morning. I really tried not to panic but it’s hard not to. I don’t think Tom was as worried as I was and quite honestly had I not brought up all the symptoms I saw he probably would not have worried as much. I couldn’t just ignore the symptoms though and was hoping it was just a huge coincidence. It was. Emily had blood work and everything looks GOOD.
Now, I feel silly and ridiculous for being so panicked, although I’m not sure why?? This was the biggest scare we’ve had since Emily got the modified T-cells. I’m also a little angry, I guess because I wasted a good 24 hours doing nothing but WORRYING. I actually spent Sunday afternoon making sure the laundry was done and packing…I was that sure that something was wrong. I couldn’t focus on anything else and I couldn’t ENJOY the day with Emily. I let cancer steal away another 24 hours of our life. Emily noticed that we were worried too, and I feel guilty because I know that SHE starts to worry, and we try to protect her from that as much as possible. I kept asking her how she felt or if she had pain anywhere and she said “Stop asking me these questions because I am no longer going to answer them.” Then I thought ‘is she really just annoyed with me?’ or ‘does she not want to answer my questions because she really doesn’t feel good and doesn’t want me to worry and she’s scared that she might have to go back into the hospital?’  I know that there are others of you out there who know what this feeling is like – the wondering, the not knowing, the waiting. I’m having a hard time getting over it for some reason. When I saw the blood work results were OK I expected to feel a huge rush of relief…but I didn’t. I was relieved, don’t get me wrong, but after all that worrying all I felt was exhausted and drained. That kind of worrying takes so much out of you. Maybe it’s also because she’s getting her bone marrow checked on Monday which is always a stressful event and Emily is doing so well I just want her to continue to enjoy being a 7-year old little girl.
We were recently interviewed and the person interviewing us asked something like “When will you be able to stop worrying”? And I replied “Never. I will never stop worrying.” (btw Tom had a much better answer to this question so I hope they share his answer and not mine!) I’ve talked with cancer parents who are 5 years, 10 years, 15 years out from their child’s treatment and they say they worry every single time their child has a cancer-related symptom, so I’m pretty sure I’m not alone. I really wish I could stop worrying because I do not want to waste time worrying anymore!
I always worry when I write these posts because I feel like everyone expects happy, upbeat, positive posts all the time; but it’s real. All three of us are still healing from the trauma of what Emily went through and when things like the past few days happen it brings up a lot of memories and worries and makes us realize that we still have a long way to go. Luckily we have a great support system including all of you 🙂
I don’t like to end these posts on a depressing note so let me tell you about Emily’s new fascination with Party City and planning parties. If you read the post from a week or two ago you remember reading about how excited she was when she discovered Party City for New Year’s decorations. Well, although I knew that yesterday was Martin Luther King Day I failed to remember to talk to Emily about the holiday. She went to school today and when I got home from work she said they talked about MLK and how it was MLK Day yesterday and WHY didn’t I tell her it was a holiday because we could have had a party! After hearing about Mardi Gras and being aware that Valentine’s Day is coming up, she is planning parties for both of these specifically so she can visit Party City. Although she says for our next parties we need more glitter, confetti and balloons (we are still picking up confetti she threw all over the house from New Year’s Eve). I ask her who she was inviting to all of these parties, expecting a large guest list, but she just said “well, you, daddy and Lucy…duh!” She is also apparently planning her 8th party for May already, although she won’t tell me any details yet. She’s always disappointed in my party and holiday decor (she was especially disgusted by my lack of Halloween decorations this past year and hasn’t let me forget about it), so I guess she has decided to take over!
<3 Kari
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  • Stefani - I know about the feelings of a parent during such a situation.Even my parents were and are like this.I continued the cancer treatments which I was going through just because of my parents.When everyone including I lost hopes on my life they still thrived hard to see me alive.When I had the social pressure on me my parents were always there to reduce my depression.Your post reminds me their continuous effort,which is the reason why I live today.God bless Emily!!!ReplyCancel

  • Eva Dogan - Hello Cari,
    We have lots of common. My son had B ALL and relapsed 23 months after his first diagnosis. We are from Turkey. We went to Germany for the treatment when he relapsed . His chemo response was not so good. He has no sibling and couldn’t find matched donor. We decided to have haplo transplant from me in Frankfurt. But only 3 months after the first transplant he relapsed again. And this time he couldn’t response at all.. The doctors told us there is nothing they can do. They suggest us to go home . But we couldn’t accept that. We found another center in Tubingen , they developed a new CD19 antibody and Alp was the first patient. He had 2nd transplant from his father while his marrow was full of %80 cancer cells. They started to give the new antibody just 2 weeks after transplant. And now it is been 1 and a half year. Thanks God he is still in remission. But last week , just like you. I was very worry.. He had weird bruises. We took a blood work and his platelets was only 120K. I was dying when i saw the result. Because more than one year he had never under 300K platelets. We repeated the blood work and it was Ok. But i couldn’t relieve for days. I think you are right , we will never stop worrying..:(
    I wanted to tell you that you are not alone and Emma and your family are givİng hope to every sick child and their family in the whole world. (sorry for my English)
    Love from Turkey.ReplyCancel

  • Christine Schreck - Kari, as a fellow worry-er I think you are doing a great job! That feeling is horrible and you are dealing with it great,! You are a fantastic mom and you inspire all of us! We will worry right along with you! So glad Emma is fine!ReplyCancel

  • Linda Matason - Dear Kari, I would have been worried out of my mind too…. SO glad it was good news but that had to be a very long 24 hours…. I have a 6 year old granddaughter who is the joy of my life…. i cannot begin to imagine what you and Tom have been thru…. feel free to unload on us anytime!

    I love the stories about how Emily loves Party City and how she loves to throw parties just for the four of you!! priceless memories…..ReplyCancel

  • karen lindenfelser - i am so glad that your party girl received good reports after such a scare. and of course you were worried! i’m sad it stole some of your joy and “time” too but cut yourself some slack – too many signs and too much background and knowledge for you to totally be at peace (which saddens me). Praise God it all worked out the way you had hoped and prayed for. Have fun at your Thon event.
    (and I hope you get more comments than Tom :)) Tom, I’ll up Kari’s ante by saying that you did have a great post. Girl power, though. 🙂ReplyCancel

  • Andrea - Thanks for the continued updates. I can’t even image what you must go through as a parent. We are always praying and sending positive thoughts your way. Emily continues to be our inspiration. WE BELIEVE 🙂ReplyCancel

Emily finished her latest round of antibiotics (oral vancomycin) for c-diff . She has been in school for the last two weeks and feels pretty good. Today we went to THON Hoops at The Bryce Jordan Center to watch the Penn State mens basketball game. It was great to see a lot of Four Diamonds Families and our Penn State friends. We have been asked to speak at THON this year during family hour. This is a huge honor and we appreciate the chance to address the 15,000 plus people who continue to inspire us through our journey. We will travel to Philadelphia next weekend and have Emily’s scheduled bone marrow check on Monday. This will be nine months since her remission. Kari and I still are thankful for every day we spend with Emily and we will pray for only positive results. We continue to be overwhelmed by the support we receive from caring people all over the world. THANK YOU! WE BELIEVE!~Tom

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