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

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Last weekend for my birthday, Kari and I went away to Nemacolin Woodlands Resort. It was the first time we stayed away from Emily since she was diagnosed in 2010. We needed some relaxing time together, but I found it really hard to sleep. I don’t sleep well at home either, but I can always check on Em when I have nightmares or insomnia. Emily was okay with us going, but asked if she could go next time because she loves to see the animals at the resort. Emily stayed with my parents and was okay until she needed to talk to us and we didn’t answer our phones. I turned off my ringer while eating in a restaurant. She had a meltdown and left me the saddest message. We called back right after we ate. She said,”Daddy I just needed to hear your voice”. We did get to relax on our trip but we all are more comfortable together as a team and probably won’t go away without Emily again for a long time!

We have been trying to figure out why Emily still has a constant stuffy nose, along with coughing and nosebleeds. We visited Dr. Powell in State College and he set up visits with specialists to see if we can solve the sinus problem and check for any other problems that can occur from all of the chemotherapy Em has had. She is currently taking four medications to help treat whatever is going on. Hopefully things will improve but she’s had it since April and it hasn’t improved. She did get normal blood test results last week and we are thankful for every day that the T-cells are working. We also ate at (and would like to THANK) the Texas Roadhouse in State College last Wednesday. They contacted us about doing a fundraiser in Emily’s name. They are donating 10% of the food sales that night to our TEAM BELIEVE for the Parkway Run & Walk in Philadelphia this fall. That money will go directly to cancer research at CHOP.

This weekend we attended the Philipsburg Relay for Life and we were honored that they asked Emily to help carry the banner and lead the survivors lap. Emily and I each won a donated gift basket as well. We took Emily’s friend Manna Potter with us to the Relay and Kari and I just laughed when Emily asked us to leave them walk alone and to give her some space. Cancer affects so many families and it still overwhelms me the amount of support we continue to have even though everybody has their own problems to deal with. We still discuss how important it is to pray for everyone fighting a life threatening illness and Emily really likes helping others that are sick. Emily and I attended church today on Father’s Day and I got all choked up thinking about what it would be like for me, and what it is like for all the parents I know, whose kids are now in heaven. It makes it hard to breathe when those thoughts happen but I have learned to deal with it and stay positive. Those thoughts remind me of how fortunate I am to have my daughter with me every day.
We are returning to Washington DC this week for a national child advocacy day. Emily will get to meet other kids that have fought life threatening diseases from all over the country. We are headed down Tuesday thru Thursday. Wednesday will be a fun day planned for all the kids and then Thursday we will go back to Capitol Hill and meet with Congress members from our home state. We are trying our best to continue to spread the word on where the National Institutes of Health research money is going and the amazing results it is helping produce. We are also telling them all, THANKS for funding it in the past. Without research funds cancer will win. We aren’t going to let that happen! We have seen some more kids lose their battles lately and we are praying for their families. We also pray for all current families fighting daily to get their kids or themselves into a permanent remission. We have had more media requests lately about Emily’s treatment and we will update everyone as soon as we know for sure when they will take place.

THANKS FOR ALL YOUR SUPPORT! WE BELIEVE! ~Tom

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  • Jim J.. - Here I am six years after the tragedy that got me involved with the LLS in the first place. The horror stories are still outweigh the triumphs in number. But not in character and value.

    Emily’s story is amazing and is one of the things that drives me on to keep doing what I do. A lovely innocent girl that was dealt one of the worst hands in life. Every day I hear about her makes me think about why I do what I do.

    Em – even when they are away your parents think about you. When I’m away from home my dog constantly thinks about me. It breaks my heart that I can’t be here every waking moment to be with him. But the time away is necessary. Soon you will learn about jobs and college and real life stuff that might not e the most exciting. But you will realize that in the big picture you can have the joy of knowing that despite having a life that’s been less than ideal this planet can hope that one day the disease that stole your childhood can be eradicated.

    So for Christmas this year ask for a pony. Or whatever. Shoot for the moon. I personally will try to make your dreams come true. You deserve it.ReplyCancel

Emily’s last day of second grade was on Friday – what a difference between the first and last day!
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This is a photo of Emily and Lucy on Lucy’s 3rd birthday!
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We also wanted to let you know that the Texas Roadhouse in State College, PA is holding a fundraiser in honor of Emily on Wednesday, June 12th from 3:00pm – 10:00pm. They will donate 10% of all food sales. We are donating the money to our team – Team Believe – for the Parkway 5k Run & 2k Walk that benefits the cancer center at Children’s Hospital of Philadelphia (CHOP). This is the second year we will have a team at the event. We will be posting more about this but if you would like to join us on September 29 in Philadelphia to run or walk you can join the team or if you can’t join us make a donation.

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  • Linda Matason - Dear Emily, I was SO excited to see the picture from your last day of school! You look fabulous! and i love your very cool shirt! have a wonderful summer with Lucy and your Mom and Dad! Fondly, Linda (Aunt Jamie’s friend)ReplyCancel

  • erica - You ARE cool like that. Have a great summer, Emily! Can’t wait to read what fun stuff you’ll be doing. We have a lot we want to do this summer too like catching fireflies, visiting Dutch Wonderland and making S’mores!ReplyCancel

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We just realized that today is June 1st – one year since Emily came home from CHOP! Last year on this day we drove through our town of Philipsburg, led by local fire trucks, through a parade of our supporters, neighbors, friends, and family who stood out in the pouring rain to welcome Emily home!

Emily is very excited that school ends in just five days so she can begin summer vacation. We are excited that Emily is finishing 2nd grade healthy and cancer free! We are so proud of her – she worked really hard this year (actually so did Tom and I…we had to learn “everyday math”)! I still remember watching her walk into school on the first day this year. I was worried about her because she had missed almost all of 1st grade (and most of kindergarten) and I was worried that she would have a hard time adjusting. I watched her walking into school and I was so excited that she was healthy enough to return to school that I yelled out the car window “I love you! Have a great first day! AND REMEMBER TO USE HAND SANITIZER!” Apparently, that was totally embarrassing for her and she told me about it once she got home that day. I had strict drop off rules for the remainder of the school year. I was to stop the car, allow her to get out of the car on her own (I was to remain in the car – no hugs or kisses allowed), and I was permitted only a quick wave goodbye from the car (no rolling down of the window and yelling “embarrassing” things about using hand sanitizer or how much I love her). I realized then that she was going to be just fine returning to school. Even though she had to go through extraordinary circumstances, she started back to school like nothing out of the ordinary had ever happened. Tom and I on the other hand still worry about her every day, all day long. Philipsburg Elementary, along with other local elementary/middle/high schools, have been wonderfully supportive of Emily and our family – thank you for your help and support!

Emily has been feeling fabulous other than a cough she’s had for more than a month. We took her to the doctor(s) and everything seems fine – blood work and chest x-ray look great (I still like being able to say “blood work” and “great” in the same sentence). She had a CT scan of her sinuses at Hershey Medical Center last week. We haven’t been for an appointment at Hershey since last summer. Emily was excited to finally tour the new Children’s Hospital at Hershey. Tom and I got a tour back in December when Emily was admitted to the “old” unit for the flu but Emily wasn’t allowed to take the tour because she was contagious. The new wing opened a few months ago. Emily saw the new – much bigger and brighter – inpatient rooms with large flat screen TVs and said “I want to stay here!” Um, no! We’re hoping to never stay there again! Emily took some time to explore the new playroom and talked the staff into giving her several craft kits to do even though she wasn’t inpatient. Then she made herself right at home in the family lounge on the oncology floor doing crafts and eating cookies. She didn’t want to leave! That might sound strange after all the time she has spent in the hospital, but really it just tells you how wonderful the staff are and how amazing the hospital really is for her to want to hang out there all day. She feels comfortable there and only remembers the fun things she did during all that time she spent in the hospital (her favorites were crafts and playing BINGO with the Penn State Nittany Lion!). The CT scan came back fine so for now she has been diagnosed with “reactive airway disease” and possibly allergies and uses an inhaler a few times a day to help with the coughing.

While we were at Hershey last week we had a chance to speak at the Leukemia and Lymphoma Society Central PA annual conference (LLS has contributed many funds to Dr. Carl June’s T-cell research). We’ve never been to an LLS event before and were so happy to have been invited!

Speaking of Dr. June – he was awarded the Philadelphia Award last evening! His research has saved many lives, including more children who have been enrolled in the CART-19 trial. You can see an interview with Dr. June here and read more about The Philadelphia Award. Where would we be without Dr. June and the rest of Emily’s T-cell team at Penn and CHOP? We would have a very different life if it weren’t for them and we think of this every single day.

We have created TEAM BELIEVE again for the CHOP Cancer Center 5k Run/2k Walk in September! We are really excited for the run/walk this year. We learned a lot from participating last year and already have several fundraising ideas in the works. More details and how to join us for the event will be coming soon. BTW – I’m still disappointed that we didn’t get free donuts last year, so I am determined that we WILL get free donuts this year!

I guess that’s it for now. It seems like we go a long time in between updates now but that’s a good thing! Emily is healthy and happy!

WE BELIEVE!
Love ~ Tom, Kari, & Emily

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  • Sue Donner Edwards - Still love reading about how good you are doing and how happy everyone is. Have a great summer and remember we all believe in the miracle that is Emily!!!ReplyCancel

  • kklkklkaren - how heartwarming it is such positive news. i can only imagine what joy it brings you to share words like cancer free!ReplyCancel

  • Sandy Wolford - Emily, we just finished our Relay in Bellefonte today. I want you to know that you inspire us to want to continue the fight for more birthdays! My 3 daughters and I love to hear how you are doing and WE BELIEVE!ReplyCancel