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May 24

My baby might have Leukemia

CANCER: One of the words no parent ever wants to hear from their child’s doctor.

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Well, we heard it today.  Our baby, Serenity, who is 22 months old (she’ll be 2 in July) probably has Leukemia – and if it’s not Leukemia the doctors say it is something just as bad, if not worse.  The last 12 hours have been an intense and crazy whirlwind of events, emotion and travel.  Here’s the story:

The background: About 3 weeks ago, we noticed that Serenity was covered with bruises.  They were all up and down her spine and her legs were covered with them.  It looked like someone had jabbed her with a stick, really hard and over and over.  Needless to say, we were concerned and we were very upset as we believed at first that one of our 7 other children (we have 8 kids) had done something to her.  They all vehemently denied doing anything and that night as I was changing her diaper and holding her legs, I noticed that my fingers were covering many of the bruises on her legs.  Further examination showed that most of her bruises mapped to finger placement when holding her.  We realized that Serenity bruised very easily, this was the first time this had happened.  We watched closely to see if new bruises showed up, none did.  In fact, the bruises she had cleared up over the next week.  We decided it might be a fluke and have kept careful watch, no new bruises have shown up. 

This past Sunday she came down with a fever and a slight cough.  While we were at my Mother’s on Sunday, several people (including us) noticed that she looked pretty pale.  We chalked it up to her fever and being sick.  Monday she wasn’t much better, her fever hit around 103 but once we gave her Motrin it went down.  Over the next two days we were able to control her fever with Motrin but on Tuesday night we started talking about taking her to the doctor.  Wednesday morning she seemed like she was doing better – and we called off the visit to the doctor.  By Wednesday evening she was having it a bit rough again and the discussion of the previous day was repeated – as was seeming a bit better on Thursday morning.  So on Thursday, we put off going to the doctor again.  Thursday night was rough and Friday morning (this morning) she wasn’t any better, in fact she seemed worse.  We noticed marks showing up on her face – they weren’t bruises but were rather strange.  We called the doctor and got an appointment for 11:20.

11:20 – We go to the doctor’s office and they check her out.  After discussing the bruising and looking at the new marks, the doctor orders a CBP – Complete Blood Panel.  He gives us a prescription for anit-biotics because he finds she also has an ear infection.  He then tells us that one of the things he wants to rule out with the CBP is Leukemia, things become worrisome.

~12:15 – We go to the blood lab at American Fork Hospital and have blood drawn, this doesn’t take long and we head home to Mapleton.

~1:20 – We’re between the Center St and University Ave exits on southbound I-15 and the doctor calls.  She says that she has half the blood work back and it is EXTREMELY abnormal.  We need to immediately turn around, bring Serenity back and have her admitted to the ER.

~1:40 – We’re back at the ER and the doc has already admitted her.  They start explaining what’s going on.  Her blood is BAD.  Her platellete count should be 200, it’s 5.  Her white blood cells are made up of all the wrong things, her red blood count is really low.  They tell us they are going to medi-vac her to Primary Childrens Hospital in Salt Lake via ambulance and they will be monitoring her vitals, if the drop they will call in a helicopter.

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~1:42 – I’m scared to death and freaking out, so’s my wife.  The Doctors tell us that if we had waited through the weekend, she probably would have been near death.

~2:00 – Serenity is loaded into the ambulance, in her car seat which they have strapped to a stretcher.  They will only allow one person to go and they have to sit in the front.  Adria rides with them.  I’m told to go home and pack bags for Adria and I – for 3 to 5 days.  I also need to get the kids farmed out.

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~2:15 – My Mom is coming over, so’s my sister.  I’ve talked on the phone to several family members and they’re springing into action.  I’m totally losing my composure by now.  My Mom shows up with my sister and they start confusing me with a simple discussion of what to do with my kids.  I tell my sister to please deal with it, I’m going home to pack. 

3:30 – I’m home, I explain to the other kids what is going on.  I tell the 3 older kids about the possibility of Leukemia.  Adria’s sister shows up to take the kids to their farmout assignments and leaves.  I get packed and head to the hospital.

6:00 – I get a phone call that the Cancer ward at Primary Childrens has said that there is a 90% chance it’s Leukemia.  They’re planning several tests and they have to give her all new blood.

7:30 – I get to the hospital.

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Since then, they’ve given her a bag of platelletes, a bag of new blood (it’s almost finished) and broad spectrum antibiotics and something to keep Leukemia blood from destroying her kidneys.  We’ve pretty much accepted that it is Leukemia.  We’ve cried a lot and learned a lot.  There are 2 main types, one has an 80% recovery rate, the other is much lower.  We’re hoping for the one with 80% recovery.  They rattled off a list of what it could be if it’s not Leukemia.  I don’t remember any of them but they sound nasty. 

Tomorrow morning they are going to do several tests that they can’t do tonight.  Depending on the results of those, she’ll have to have a bone marrow biopsy tomorrow night for which they’ll give her general anesthesia.  By tomorrow night we should know for sure whether she has Leukemia and if she does, what strain it is.  Once they know, they can start treatment.  Treatment (as most people know) is going to be ugly.   It’s going to be a rough weekend.

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I Twittered most of what went on today.  There was a huge outpouring of support, committment to pray, and love.  I saw them coming in but didn’t have time to read them all until just recently.  After the events of the day, it was really nice to sit down and read through all the well-wishes.  Thank you to all of you from the bottom of my heart.  I’ve also received several emails of support, some from people I don’t even know but who know what we’re going through.  Thanks to them as well, I’ll try to respond to all those in the next day or two. 

The staff here at Primary Children’s has been great!  They’ve been extremely helpful and accomidating.  It’s been an exhausting day and I’m sure it will just continue through the weekend.  I’ll be blogging more as things develop.  Thanks again to everyone who has offered support and expressed concern.  We truly appreciate it. 

I’ve been and will continue to post pictures to my flickr stream – you can see it here.

UPDATE: Day 2 is posted here

27 comments

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  1. The Wheeler Family

    Adria and family…our hearts, thoughts and prayers are with you! ((gentle hugs))

    We4 aka Stacy Wheeler from AmityMama.com

  2. Amanda

    OMGosh ~ my heart literally broke into a million pieces as I read this. I can’t even fathom how you guys are feeling. My prayers are with you and praying for a miracle. (((HUGS))) Stay strong as a family.

  3. Jessica_momof7 from amitys

    Adria Phil and family, I am so very sorry for what you are going through. We will pray for your family.

  4. Jeff Barr

    Phil and family, we’ll be praying and fasting for you here in Seattle. Let us know if there’s anything that we can do to help.

  5. Jodi Pilcher (Korwynne@Amitys)

    Hoping your family gets some answers and your baby girl improves.. please let us all know what we can do to help, if anything.. until then.. praying.

  6. Amina Chaudhri (Gypsylily @ Amity)

    Dear Adria, Phil and Serenity,

    Thank you for updating your blog, and we are thinking of all of you and hoping for an update soon.

    Love,
    Amina

  7. Becky W

    Phil & Adria – I am so very, very sorry to hear about your news. My heart is breaking for you. You’ll be in my thoughts and prayers for the long haul. Very big HUGS!!!!

  8. Jordan

    May God bless you and your family. Please let me know if I can help in ANY way,

  9. Meg (Megmama @ amity)

    I hope and pray that your lovely baby gets better and has the better chance of recovery variety. Our prayers are with your family tonight.

  10. Annsni

    My prayers are with you and your family. I pray that your peanut will be able to beat whatever is going on in her body. HUGE ((HUGS))

  11. Susan Reynolds

    There are no words to describe how I felt when Jesse Stay told me about your little sweetheart. Please know that people across the country and likely around the world are praying with and for for you.

    When sixty year old people like me get a sudden cancer diagnosis it’s one kind of pain but for a tiny little one like yours it’s another level entirely.

    The blessing of a quick diagnosis, the support of your church community, and that this hospital understands that they are treating the whole family are rays of sunlight. And the words “Please let me know if I can help in any way” are not just lipservice when you hear it from us. We want to do what we can do. And then we’ll do what you need when you need it.

  12. Pamela

    I’m so very sorry to hear your news. I found you via a friend on Twitter.

    We’re LDS as well. We’ll keep you and your beautiful angel in our prayers.

  13. Sharon (from LDS-MN)

    Adria, Heather let me know about this. We will be praying fervently!!!!!!! I can’t imagine. Has she had a blessing yet?

  14. Radhanuga

    We are praying for your sweet little girl and your family.

  15. Marina Martin

    I am so sorry to hear about what your family is going through, and your little Serenity is in my thoughts.

    I echo Susan’s sentiments. If you need something, speak up, and we’ll deliver.

    I assume that this means she will need a bone marrow transplant? If so, I’m sure many of us are willing to get tested. I certainly am, and I’m in Utah all the time. Keep us posted.

  16. Carey (from Amity)

    Your sweet baby girl is our prayers.

  17. Jane Quigley

    You and your family are in my prayers. I can’t imagine what your going through. Please take care.

  18. Beverly Scott

    Saw your site on twitter….I will give your name to my pastor at church and have you put on our prayer list. While I am not LDS I believe we as Christians worship the same God…..God Bless you and hang in there…remember our Father will not give you more than you can handle…I will keep you in my prayers

    Beverly

  19. Phil801

    I apologize to everyone for not being able to respond to comments in a timely fashion – things are pretty busy and hectic here and when they do slow down, we tend to fall asleep. :)

    I would like to express our deep gratitude and appreciation to all those praying for us and thinking of us – no matter what denomination. We deeply believe in the power of prayer and know that He hears us all. Thank you so much for taking the time to consider us in your prayers.

    @MarinaMartin so far they have not even mentioned bone marrow transplant as a treatment. I plan to ask the doctor about it tomorrow, I know it’s a solution for when things aren’t working so I think that means they are expecting the treatments to work.

    @SusanReynolds I followed your recent trial, I hope we are as successful as you were! Thank you for your thoughts and prayers.

    At this point, our needs are rather minimal. We are grateful for all the offers of help and we honestly will ask for help as things come up. For now, family has all of our kids and all our other cares in the world have literally disappeared. I’m sure when we get home things will be nuts!

    Thanks again everyone, it’s about time for me to get some sleep :)

  20. Wendy Thacker

    Phil and Adria,
    Thank you for letting us know and for keeping us updated. It seems that Heavenly Father has some tough trials ahead for all of us. I know that He doesn’t give us more than we can handle if we do it in faith. And I know that you will. With that said, it doesn’t always feel easier at the time. Certainly with the trials that our family has been through recently, we have a sure knowledge of God’s constant care and love for each of us no matter what we go through. Just keep trusting Him and stay close to the Spirit. His peace does come and wow–I am so grateful for that.

    Primary Children’s is such a wonderful hospital. We were just there for our pre-surgical appointment with Caleb on Thursday night. I was so impressed with how they care for the family and for the whole person. I hope you have been taken around to see the resources that will help you through. If not, ask to join their surgical tour any night (M-Th) from 4:30-5:30 in the Day Surgery area. If you let them know you have an extended stay, they will show you around to all of the areas of the hospital that can make your stay easier on you.

    Caleb will be admitted next week (June 2) for his surgery–looks like our family is keeping them busy. We are headed out of town tomorrow to take Caleb for a summer trip to the California Redwoods. He has always wanted to see them. We are kind of scared too as his surgery gives him a 10% chance of being paralyzed from the waist down. We have had quite a crazy spring. I’ll have to tell you about it some time. I read somewhere recently and it has really stuck with me that we can liken our spiritual growth to “body building”. It is that last repetition where we think we can’t hold it any more but do it anyway–that is where the real growth happens as we push through it anyway with faith on our spotter. Heavenly Father is there with us through all things. Trust Him and His wisdom. This life is about putting ours into His hands “willingly” and with faith. We love you all and are praying for you. Perhaps we will see you there next week. Love, Aunt Wendy

    PS
    Let me know if you need me to send any other emails to the extended family. I think you should have all of their addresses now from the post I sent you. Thanks for the link to your blog. It really helps all of us to see you both with little Serenity and to hear updates from you directly.

  21. Christy Bonham

    Please tell Adria that she and all of your family are in my prayers ( and all of the
    Relief Society sisters’ prayers as well).

    I am so sorry you have to go through this trial.

    Love, Christy

  22. Mark Krupinski

    I can’t image what your family has been going through. My families hopes and prayers are with you.

  23. James

    Praying for your daughter and family. Thanks for being so open about this, others going through same might find your blog and take strength in realization they’re not alone.

  24. MrsA

    Leukemia hit my family about 20 years ago. It was a tough row to hoe in every possible way. There is however, good news. So much has been done since then in the way of improved treatments and better comprehension of the disease (actually it is diseases –plural– because “Leukemia” is a blanket term for several diseases and your baby is dealing with only one of them, but then you probably already know that). You can know in the very marrow of your being that you little one is being given the best care possible. When however, the cold reality slaps you in the face it is just feels best to know that there are prayers and good wishes for your baby and your whole family.

    Count me in the number of those from all over the map who will add your baby’s name to prayers sent straight to the Great Physician, Himself.

    MrsA
    Houston, Texas

  25. KAYLA

    omg!!! hopefully she gets better and fights wat ever she has.. she is just a little girl, she should live a ong time.. huge hugs and kisses.. =DD

  26. Robin G.

    Dear Phil Burns and Family,
    Please know that my heart aches for your beautiful daughter Serenity and I pray that she is well, you are well and your family is well and that she will rally and her leukemia will go into remission, or has already.
    My friend Elizabeth’s granddaughter Peyton is two weeks old and has been diagnosed with ALL leukemia also. She is not doing well. Her parents were told ALL was 1 in 5 million and I’m learning otherwise. They’ve been told there’s only one other case in the country. I’m forward to them your blog and e-mail address. Perhaps you may want to commiserate or at least check each other’s blogs for support. My best wishes to you and your family.
    Robin G. Walnut Creek, CA

  27. Robin G.

    Dear Mr. Burns,
    Peton’s blog address is: http://www.welovepeyton.blogspot.com.

    Regards,
    Robin G.

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