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May 26

Serenity is now sporting a super cool Port Catheter!

This is Day 3 of my daughter, Serenity, being treated for Leukemia.  Day 2 is here. 

Today has been a very long, very stressful and very upbeat day! 

The day started with surgery prep.  Her platelletes were low again, too low to do surgery, so they gave her another bag.  Then there were several drugs that she needed to take beforehand.  A couple hours later, the surgeons came and got her.  They took her down on her bed to the operating room.  The anesthesiologist met us and gave her some drugs in her IV to begin sedation.  After that we were able to hold her for a bit and kiss her goodbye.  Then we handed her to the surgeon and they took her in.

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This whole experience has been a multi-faceted learning experience for me and for Adria.  Most of all, we’re learning about cancer and blood.  But, we’re also learning a lot about ourselves.  We’ve been very blessed with 8 children who, up until now, have been completely healthy.  We have never had a child spend the night in the hospital (other than at birth) and we’ve never had a child need surgery or really any kind of risky medical procedure.  So this was the first time I’ve ever had to hand my child over to someone so they could go cut her open and do stuff to her. 

I learned that I don’t really handle it very well.  I was extremely stressed about it, I couldn’t sit in the waiting room for more than one minute before I was feeling like I was going to go crazy.  Our good friend Amanda was here with us as well as Adria’s sister, Tara.  I told Adria I had to leave.  I got up and went and wandered the hospital for a bit, kind of in a daze.  Then I thought about that when Adria is stressed she likes to eat certain candy – we didn’t have any of that here.  So I finally had a mission, something I could focus on and not imagine the horrific things they were doing to my baby.  I got in my truck and headed to the store where I tracked down Adria’s 3 favorite comfort foods (peanut butter M&Ms, sugar babies and Granny B’s Pink cookies if you were wondering).  I actually had to go to 3 stores to find everything.  I had just gotten the last of it when Tara texted me and said the surgeon had just come in and it would be about 30 minutes more.  Perfect.  I headed back to the hospital with treats in hand.  About 5 minutes after I got back, the Oncologist came out and told us they were done and that everything went excellent. 

It was about 20 minutes later that they came and said she was awake in the Recovery Room and that Adria and I could go in to her.  We walked in and she was crying.  I picked her up and held her for a while.  She was coughing up a lot of flem and they told us that they had had to intubate her and put her on the breather twice due to her lungs still having a bit of pneumonia in them.  They gave me a suction tube and had me suction her out when she coughed stuff up.  It was very good to be back with her. 

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Once things were stable, we headed back to her room.  The nurse immediately gave her a once over and checked everything out on her. 

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Then she slept for a while.  She had gotten her first Chemo treatment which meant that there were now drugs that she had to take orally that weren’t an option.  The Nurse schooled us on how to affirmitively work with Cancer Kids on taking their meds.  They have to learn that there isn’t an option and it doesn’t matter if they don’t like it – they just HAVE to take it.  Cancer Kids definately have to have a different lifestyle than the rest of us are used to.  After sleeping for a few hours, she woke up again and was in a pretty good mood.

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That lasted for about 15 minutes and then she was worn out again.  But it was really fun to have some of the old super happy, super excited about life her back again!  She and I laid down on the bed and slept for about 5 hours – we were both exhausted.  After that catnap, she woke up and her appetite was back!  She hadn’t eaten solid food for about 4 days and she started asking for everything!

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We gave her a sponge bath and got her set up sitting on Adria’s lap to have a great meal of cherios, yogurt, gatorade, bananas and ice cream.  She was one happy kid while she chowed down and watched a movie! 

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After about an hour of eating, she was kind of tired.  Then my brother came over with Serenity’s one year old cousin and they played for a while on the bed.  She wasn’t too interactive though as she was ready for bed.  After they left, she laid down with Adria and has been sleeping for several hours.

Now it’s really late and it has taken me all day to get this post put together.  There continues to be lots of support and love pouring in and I want to thank everyone for that again.  I’m way behind on personal responses – it might be a while before I get through them all, but I want everyone who has sent personal notes and donations to know that we are extremely grateful and very moved by the showing of love that we’ve received. 

Several people have contacted us asking if there is a ‘support Serenity’ site or account being created.  There is.  Some other people are heading it up and I’m told it should be ready by Tuesday.  I don’t know a lot of the details on it, but for those asking, we’ll have that soon.  I’m especially moved by the offers of donations.  It was something that never occurred to me would happen, but several people have pointed out that this is going to cost a ton of money – another thing I’m not even thinking about.  It’s interesting how you can stress about money and then when something like this happens that is probably going to cost more than our house – money isn’t what you stress or think about – you just do it.  So to those thinking about it for us – thank you!  I’m sure that once we get home and back to the real world that will become a much higher priority for us. 

We have to be here in the hospital for 7 days starting today.  They have to closely monitor her while they get her started on treatment and refine the protocol they are going to use.  After that it will be weekly, then monthly visits for more than two years.  We’re honestly looking forward to all those treatments – it means we’ll have our little girl with us that long and hopefully get cured and she can go on to live a full life.

UPDATE: Day 4 is here.

The story of Serenity’s battle with Leukemia begins here.

7 comments

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  1. ZZamboni

    I have a 2-year old daughter, so I can imagine the anguish you are going through. She’s a beautiful girl, and I hope everything goes well for her and for you.

  2. Ozan

    Hi Phil,
    My 10 year old cousin had this kind of Leukemia 4 years ago, and after a long & intense treatment period now she’s back in school & her normal life. just try to keep your & her morale high..

    and a quick tip : try to find organic & fresh kind of celeriac and artichoke to support her liver. Just boil these vegetables with water & little bit olive oil and give her once a week. You’ll see the improvements when you keep the records of her liver enzymes..

  3. Corrie

    Phil – are you wanting any of the Goji we used with Ty? It seemed to help with the nausea and he never needed a transfusion after having it.

  4. Skip

    My youngest son had A.L.L. when he was 10. It was a 3 year protocol w/2 add’l years of observation. He is now 23, completely cured, and literally the picture of health – a competitive, all-natural body builder.

    God’s still in the prayer answerin’ business. Take hope from our story, we will pray for you and your family. I well remember the port-a-cath days, the back pokes, and everything from indigestion to other side effects.

    Free advice: pay attention to the naturopaths – they can help a LOT with side effects. Let your doctors know if there are unusual reactions to the meds, do NOT assume you just have to live with it. Once for example, my son had crazy bad cramps as a result. They dialed back the dosage and extended it, and he was fine.

    Praying for you all – God is faithful!!

  5. Amy B

    My heart ached reading thru your posts…as a mother to 3 little ones I cannot imagine your heartache, hopes, confusion….but as the posts progressed your strength and determination shined thru. May your beautiful baby girl pull thru this with the grace so evident in those pictures. May your hearts heal as she does and know for what it is worth this total stranger sends her love and well wishes.
    Amy Burgess

  6. Ariyes

    The pain which you are going through is untollerable. We can just pray for the well being of your daughter. Don’t loose your hope, everything will be fine.

  7. Janel

    My prayers go out to you and your family. My finance was diagnosed with leukemia in March 2008. He was 25 at the time. The doctor came in the room and told the family that 90% of the cancer cells were gone after the first treatment. He has been in remission ever since. Remember to keep your head up there is always light at the end of the tunnel. After the treatments Serenity will be fine. She will live a long and healthy life.

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