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

Mom’s View :: Constant Worry

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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  • 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

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