Author: Phil

A friend and old business partner, Jesse Stay, has put together a ChipIn Widget that will let those who have been asking how to donate money for Serenity do just that.  He has all the details on his blog here.  As I mentioned in my prevoius post, he and a few other people are also working on a site and an account to make donating money very easy. 

Our family is very grateful to those who are thinking about our finances and those who are willing to help out.  Expenses haven’t really piled on yet, but I’m sure that it is going to be completely overwhelming when it does – I’m just not thinking about it until we get out of the hospital.  I’ll also add the widget to this blog to make it easy to find. 

We are very thankful and feel very blessed for the support of family, friends and especially the community (I can’t tell you how many notes I’ve received from people we don’t know) during this trial.  May God bless every one of you.

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.

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. 

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

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.

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!

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! 

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.

A little bit of peace.

 

After having a slight reaction to her last blood transfusion, they gave her some Benadryll and we were both able to get some good sleep.

Surgery in about an hour.

This is the Day 2 post of my baby, Serenity, being diagnosed with Leukemia.  Day 1 is here. 

It’s been a Bad news, Good news kind of day. 

The bad news – our baby has Cancer.  The good news – she’s most likely not going to die.

The bad news – she’s looking at 2 1/2 years of treatments.  The good news – she’ll most likely be around to have them all.

The bad news – she starts chemo-therapy tomorrow.  The good news – her type of Leukemia can be treated as an outpatient.

The bad news – she’ll be in the hospital for 7 more days.  The good news – after that she should be pretty much back to her old self.

The bad news – she has to have blood drawn and intra-venous treatments a LOT over the next 2 years.  The good news – she’s going to have a port catheter installed tomorrow so no needles after that!

The bad news – she has A.L.L. Leukemia (which has an 80-90% remission rate).  The good news – she doesn’t have A.M.L. Leukemia which can kill in 24 hours to 90 days and has low success rate for treatment.

You know what?  It really sucks having to accept the fact that your baby has cancer.  But once that’s done, there are silver-linings to that dark, dark cloud.  It makes a HUGE difference just KNOWING.  I was a total wreck the first 24 hours, now that we know what it is and what the chances and options are, we’re able to build action plans.  I’ll tell you what, after the last 24 hours, it’s REALLY exciting to make plans for Serenity that are 2 and a half years down the road.  Making those plans for her means that hopefully she’ll still be with us.  It means we can fight this thing, we can start strategizing and making battle plans to wage this war. 

It feels kind of like a startup company, which I’ve been doing for the last 18 months anyway, it’s familiar territory and I feel kind of comfortable here.  Just like a startup, Serenity’s plan involves risk – a lot of risk.  But there’s a huge reward and it’s very much worth time, effort and money.  Going into this we have no idea how much money it’s going to cost but it’s got to be done and we’ll figure that out as we go – just like an early stage startup.  The point is, I feel like I can do this, I’ve been doing it for a long time. 

Tomorrow marks the begining, everything so far has been about stabilizing her and getting her blood straightened out.  All her counts are much, much better.  We’ve been working with her potasium levels today.  They were the last thing that was really out of wack.  Now her blood (after two transfusions and 2 bags of platelletes) is pretty low, but it’s within functional and operatable ranges. 

She was feeling a bit better today, she played baloon bounce with me and actually laughed for about 5 minutes.  Then her burst of energy gave out, she laid down and went to sleep for several hours.  She played around a bit more and then crashed.  They tell us that once she adjusts to the chemo and steroids that she’ll be her normal self pretty quickly.  That’s very exciting to me – Serenity has been my little tag-along buddy for the last year.  She is VERY much a Daddy’s girl and does most of the things that I do, especially if it’s around the house or in the mountain.  She’s my little buddy and traveling companion and I can’t wait to get her back out in the mountains where she is happy beyond belief.  As I’ve sat with her here in the hospital, not knowing what she had or what her chances were, I reveled in knowing that in her short time with us this far, she has been very happy and has had some wonderful experiences.  Now that we know she will very likely get plenty of time with us still, I plan to make sure that that happiness continues.  I think I’m going to plan a wellness party for her up in the mountains, next to a big river where she’ll run and laugh and just love being alive.  I think we’ll do that for sure as soon as she is up to it. 

I’ve been working on this post most of the day, things are very busy here and there are lots of interuptions – many of them welcome.  Several friends and family have been up to visit us and it’s been nice seeing them.  Thanks to all those who have expressed love by either coming up, sending messages or commenting on the last blog post.  We really do appreciate the love and support we’ve been receiving.  I took a few videos of Serenity playing around today but I can’t upload them to YouTube, I think they must be blocking uploading or something.  By the way, Primary Childrens Hospital has free wifi available and we’ve really appreciated being logged on most of the day. 

I’ll be posting more updates tomorrow after she has been to surgery.

UPDATE: Day 3 is here.

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

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.

~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.

~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.

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.

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