Category: General

This is day 16 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 13 is here. 

This weekend has totally and completely sucked.  I’m sure a big part of it is the compounding effects of the events of the last two weeks, never being able to catch up on sleep, bumpy stuff with work, etc.  But the weekend that just won’t end started early Friday afternoon on a bit of a good note – I headed home earlier than planned. 

Turns out I wouldn’t have been there much longer anyway since on the way home Adria called me and said that Serenity had been completely not herself, pale, ornery, in pain.

Pain is expected – Leukemia hurts.

Ornery is expected – being on steroids just does that to a person.

But, rule 2,483,123 of having a child with Leukemia states: “If the child is not being herself and her color isn’t right, take her to the E.R. and get her blood checked.” It might be rule 2,483,122 – I’m not positive – actually, I think that one talks about never expecting your life to be normal again.

So, I cancelled my fantasy of maybe being able to actually go do something with Adria Friday night and got on the phone and started making arrangements for the other kids while I drove home, Adria packed our bags.  I got home and we loaded up Serenity and headed to the E.R..  She really didn’t look good.  By the time we got to the ER at Utah Valley, the oncologist had already been on the phone with Triage and they knew we were coming.  As we pulled up, I had my little speech prepared to keep us out of the waiting room (neutropenic means her neutrophil (a type of white blood cells) counts are extremely low and she has little to no immunity):

“This is Serenity Burns, she was recently diagnosed with Acute Lymphocytic Leukemia, she is neutropenic and is symptomatic of requiring an immediate blood transfusion.”

I spouted that a few times, feeling a bit like Jane from Firefly in the episode where they break into the hospital.  Anyway, they sent us into a room to check us in and the first question out of the RN’s mouth after hearing my little speech is:

“Has she recently been on any medications”

I was stunned for a minute, couldn’t think of anything to respond with that wasn’t just rude.  After a second I said without further hesitation, ”well, with recently being diagnosed with Leukemia, she is now on chemo, zofran, dexamethazine, prevacid, oxycodin, PEG injections, sephra on mon and tues, and has recently had about a dozen blood transfusions and as many platelet transfusions – but that really hasn’t changed in the last few days.”

Then it was her turn to be stunned and ask me to repeat the list slowly.  hehe. 

Anyway, we spent the next four hours in the emergency room.  They had to call a nurse down from the pediatric ward because they didn’t know how to access her port.  Then when the labs started coming back, we asked them for specific results.  They told us her ANC with 1.7 – it has never been above .01 since this started and we were startled.  They were ready to discharge us when I told the doctor how surprised we were about her ANC count.  As I explained the history, he nodded and then left.  A few minutes later the nurse came in and said, “umm, her total WBC (white blood count) is 1.7 – her ANC is zero and the doctor is on the phone with the oncologist”.  It would appear that we were a little more versed in blood chemistry than the ER doc, which isn’t really surprising since he’s not an oncologist. 

The good thing was that her platelets were 51 – which was pretty good for being 5 days since her last transfusion, and her red blood counts were good.  So we checked out of the ER and went home.

Now, those of you who know me well know that we are normally very tolerant, almost too tolerant, when it comes to medical situations with our kids.  After raising 8 kids you tend to get that way.  We haven’t taken one of our kids to the hospital in years and barely ever take them to the doctor.  We’ve had half of them at home, the twins have only been to the doctor once after they were first born.  The point is – we have been very clearly told that when it comes to Serenity we have to now be extremely paranoid.  Even though she was fine, we did the right thing taking her to the ER, the oncologist is the one that said we should.  We’ll probably do it dozens more times and be wrong, but on that one time we’re right it’ll be worth it.

So, that was a late night in semi-crisis mode.  She was up all night not feeling good at all.  Then Saturday everyone was really tired, Adria started getting a migraine and I had this bizarre allergic reaction to something – Adria thinks the new dryer sheets she switched to are the culprit.  So I took 50 mg of benadryll to combat the hives I was covered with and crashed around 2 pm – and woke up about 12 hours later feeling much better.

Adria woke up this morning with a killer migraine and I felt like crap.  At about 5:30, Sarek (13 year old son) walked into the kitchen and threw-up all over the place.  That was fun.  We pretty much just lazed through church – we didn’t really ever say “we’re not going”, just nobody had the energy to get up and get ready.  Serenity is incredibly needy.  I’ve thought about twittering every time she needs one of us to get up and get something for her, I swear it’s at least once every 5 minutes.  That’s fine, I truly don’t mind meeting all her needs – it’s just VERY tiring. 

This evening it was time to flush her port (she was re-accessed at the emergency room and we left her accessed since she has a clinic visit tomorrow).  When I lifted up her shirt I was shocked to find that her port dressing was full of blood!  I called the Home Healthcare Nurse and she came over about 15 minutes later.  She discussed the situation with the oncologist on call and after about half an hour they decided it wasn’t a critical situation. While there was quite a bit of blood, it wasn’t still currently bleeding.  The theory is that her platelets are low again and she probably knocked the needle in her port, causing it to bleed a bit and normally to clot quickly.  But they decided it probably just took a while to clot this time.  So I took a sharpie and outlined the blood levels so we could tell if they changed and the Nurse left. 

Tomorow we have a clinic visit in the morning at PCMC.  The weekend will hopefully end after that – but last time we were at the clinic it went unitl 8 pm.  I don’t really like this weekend.

 This is day 13 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 11 is here.

First, thanks to everyone who continues to comment and especially those that are still blogging about Serenity.  We really appreciate the emotional, financial and spiritual support that continues to roll in.  I’m preparing some stats on the chipin donations that I want to share in an upcoming post.  The amount that has come in is staggering, the number of people – especially those we don’t know – who have donated is amazing.  It’s all happening because of all the people who have installed the widget on their site and who have blogged about it, it really is becoming quite a study in internet based support.

Her Zofran, which is for nausea, ran out today – it’s only $250 bucks a bottle – so we have to get some more tomorrow.  I’m pretty sure we’ve already spent over $1,000.00 on medications.  We’re already getting bills from the hospital, it’s only a few so far – lots and lots more will come – and it already totals over $8,000.00. 

Serenity is doing pretty well, all things considered.  She still throws up several times a day but she has been eating pretty well.  She’s lost several pounds and looks frighteningly thin, but it’s to be expected.  She takes steroids to counter affects from her chemo and Perced to counter the effects of the steroids and zofran to counter the effects of it all, Oxycodin to counter the pain from the chemo and leukemia and Sephra to keep her from getting pneumonia that she is susceptible to from the chemo.  She panics everytime she sees a syringe, signs ‘all done’ (we teach sign language to all our kids when they’re infants) and says “No Medicine, done!”  Then screams as we force it in her mouth.  But, the screaming is subsiding and the panic is as well.  She now frequently says “no medicine” as a question every time we approach her (without syringes).  We tell her “not right now, but in a little bit” and she relaxes a bit.  I think she is beginning to adjust to the idea that she has to take medicine all the time although she has no idea why.  I think that’s the worst part – she doesn’t have any clue as to why all the sudden she is getting all these treatments and her parents are forcing her to take yucky medicine.  When she throws up she pushes her throw up tray away and says “all done” – at almost two years old she is already a pro at puking. 

There are happy times now too.  She frequently plays with the kids and likes to play little games with her parents.  Today she was playing “poke dad in the face” which she thought was absolutely hilarious.  My favorite times are when she finds something exciting and starts to laugh.  It’s a beautiful thing to see her laughing.  After all she’s been through in the last 2 weeks it’s just wonderful to have her with us and to have her laugh.

This is Day 11 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 9 is here. 

I HATE Cancer.  I cannot stand what it’s doing to my baby, it rips me up inside every time she is affected by it.  Today was one of the worst, second only to dropping her off for surgery on Sunday.  I think any Father can understand (but hopefully hasn’t had to experience) the feeling of helplessness, frustration, anger and impotence of watching your child suffer and being completely unable to do a single thing about it.  A father is supposed to be able to keep his children safe from harm, he is the protector and the provider.  Cancer completely robs a father of those abilities.  How does a father spurn an invisible, untouchable and deadly enemy?  It forces you to do things and allow things to be done to your child that you would never do in real life.  Seriously, what father would hold down his baby, force liquid into her mouth that he knows will probably make her puke instantly – and when she does puke, as soon as she is settled, you force the same thing again – yet in the last week I’ve done it dozens of times to her. 

Today I watched and held Serenity still as they gave her drugs to put her to sleep so they could shove needles into her back to inject poison and her hip to extract bone marrow.  I’ve seen people stoned many times before – once she was clearly stoned out of her mind it didn’t really bother me.  Then they gave her drugs to put her to sleep, she was sitting up, leaning against me and it was simply as if she had taken a nap.  Then I laid her down – and that was the bad.  It wasn’t like she was asleep – it was like she was dead.  Her eyes were wide open, she was quite stiff, and it totally reminded me of the only time I’ve held a dead person.  It completely freaked me out – I had just stood by and helped as they apparently killed my baby.  I knew intuitively that she was fine, that it was a simple procedure that the doctors and nurses had done many, many times.  But mentally I had just watched my baby die, it took me a bit to get past it.  I didn’t, couldn’t mention it to Adria, she was a little freaked out by it too.  I hate that Cancer made me allow, even assist, in making that happen.

Of course, she was fine but the point remains: I hate Cancer and what it makes a Father do and allow.

On an easier note, we had Serenity’s hair cut today.  Her long hair was beautiful but it got in the way every time she threw up.  It was hot and frequently sweaty and is going to fall out very soon anyway.  So today she got a bob.  It’s different but quite cute! 

And on a happy note, after she had her intravenous chemo treatment, her bone marrow aspiration, her lumbar puncture along with her spinal chemo tretment, and new platelets – she had her port de-accessed.  That means she had the dressing, tubing and needle removed from her port – now her chest is clear and the only unusual thing about it is a bump in her chest above her heart.  She is SO happy and proud of that! 

The other cool thing she got today was her “Courage Necklace” which is a cool thing that the Child Life people at the hospital do for the kids.  They get a necklace with beads on it that spell out their name and they get a particular bead for different things they’ve done for their treatment.  There’s one for an ambulance ride, one for chemo, one for surgery, one for getting a port and about 30 other things.  Today Serenity got about 15 beads (too bad they don’t have one for puking, she’d have about 70 of them)- she’s been through a lot! 

I’m SO glad that our baby is still with us, I’ll have to watch all the events I’ve described here happen repeatedly over the next 2 1/2 years until she is cured – and I’ll do it gladly.  But I still HATE Cancer.

 This is Day 9 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 7 is here.

It has been a whirlwind week.  While it was only seven days it feels like we were there for months – a lifetime even.  In some ways it’s good we spent a full week at the hospital, it was long enough that everything prior to it is kind of a blur in our minds.  In the last week we became well trained in the ways of Oncology, Blood Chemistry and Nursing.  We now speak a different language, not quite fluently – that will come – and we are now able to do things we’ve never tried before.  Things like creating and working in a sterile field, flushing a Port Catheter, extensive drug preparation, drug protocol management and on and on.  These things have now become commonplace for us and we realized how alien they used to be when our 17 year old daughter was trying to follow and understand what we were saying and doing. 

In short, we are now Cancer Parents.  We have new priorities, new stresses, new tasks and lots of new rules.  Most of all, lots of the old things that were stressful just aren’t critical anymore.  What matters most now is keeping our baby alive and helping her get cured.  It’s interesting the way life changes and we adapt.  Having a child with cancer is hard, but it’s worlds better than not having that child!

It hasn’t been easy being home.  Serenity’s Oncologist noted that we seemed very apprehensive when we were checking out of the hospital.  We explained that the reason for it was that we were leaving the constant care and safe haven of the hospital and we were feeling the burden come on our shoulders to keep our baby safe and healthy.  As parents of eight children, we’re seasoned pros at raising babies but this is something completely new and frankly extremely scary.

Once we left the hospital it was like we were entering the world for the first time.  Everything seemed different yet nobody realized it but us.  It’s like we’re living on the same world as everyone else but we’re on a slightly different plane.  I think we now live in a parallel universe with other cancer and crisis families.  Families like my cousin Corrie , our dear friend Amanda, or @tmartini on twitter – families that live with kids in crisis.  I suspect they see the world in the way that we are now viewing it – and we are looking to them for guidance on how to navigate it. 

In the last week I came to look at much of the web 2.0 technology that I’ve become accustomed to in a very different way.  I’m now thinking about and exploring ways to use that technology to help families with kids in crisis.  I’ve mentioned before that we are working on creating The Serenity Foundation to help families who find themselves in medical crisis with their children.  At first our thoughts were mostly around money and while that remains a big part of what we want to do, we found that it was extremely vital to us to be connected to friends, family and community through the internet.  With help from friends, we were able to rapidly create a central point of information about our situation and, most importantly, not have to field 100 phone calls a day explaining what was going on and constantly reliving the emotional turmoil.  The emotional, financial and motivational support we received initially and continually throughout the week from our online communities REALLY helped us to soldier on.  We want to find and create ways to help other families find that connection when they are in a similar situation.  I’ll be talking more on that later.  For now, if you are interested in volunteering to help create a centralized social networking solution, please let me know. 

Now for more of an update on Serenity.  We got home on Friday and spent most of the day setting up a sort of nursery in the Living Room.  Serenity can’t walk right now, her legs won’t support her weight and they are in pain from the Leukemia and chemo.  We didn’t want her isolated from the family so we purchased (with her donated funds) a new twin bed to be the center piece of the Living Room and set up places for her toys and entertainment.  We moved the TV into the Living Room along with several couches and set up several storage locations for all her medical supplies.  Now she has a small living area in the central part of the house – she won’t be isolated in a bedroom which would lead the other children to feel they were abandoned when we were tending to her.  Her bed is off limits to the younger children so she can be safe, otherwise her 3 year old twin siblings would surely be jumping on the bed and doing other things that could lead to her being hurt. 

Once we had the room set up, we were exhausted – and she was nauseous.  She threw up several times, which continued into today.  We had a long night without much sleep.  This morning the home healthcare nurse came by and went over their services with us and made sure we knew how to flush her port.  We then headed out to pick up more drugs for her (she and Adria stayed in the car while I ran in).  After that, the other kids came home (except for Kaniho and Sarek who are having too much fun staying with my brother) and we explained several new rules to them – which were promptly broken and repeatedly reinforced. 

It was very nice to have most of the family together again!  However, we once again realized that one week in the hospital was a lifetime.  The sheer noise level increase and utilization of child energy was a little overwhelming!  We’ll get used to it quickly, but it was very different then just having mostly silent (in comparison) Serenity with us.  We are very grateful that we have a very responsible 17 year old daughter, she offered to babysit so that Adria and I could have our first break in over two weeks.  We went to see the new Indiana Jones movie and hurried home.  We gave Serenity her late night drugs, which caused her to throw-up again, and settled everyone in bed. 

I was too tired to post last night, and I’m half dozing while I write this.  Hopefully tomorrow will be a little more calm after church (I’m taking the other kids while Serenity and Adria stay home) and we can get some good napping in!  I also hope to catch up on responding to all the email, blog posts and other well wishes from the last week – if I haven’t gotten to yours yet, I apologize – things are still a bit crazy, but we’re very grateful for everything we’ve received!

This is Day 7 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 6 is here.

Depending on how her bloodwork looks tomorrow, Serenity is doing well enough that her Oncologist is ready to discharge her!  Her blood counts are way up – not anywhere near a typical healthy person – but up enough that she is stable and can function safely outside the hospital.  She’s still imuno-compromised and we’ll have to be very careful, but she’s out of the high risk zone.  It’s all contingent on how her blood is doing tomorrow, so cross your fingers with us that they’ll be good and she’ll be able to go home!

She was doing well enough today that she was able to leave the room and ride around the ICS Ward in a toy car.  She still had to wear a mask, which she hated at first but decided it was worth wearing over going back in her room.  She spent about half an hour riding around and looking out the big picture windows at the mountains and city.  It was pretty exciting for her to be able to get out of this boring room, but she was pretty worn out by the end of it.

She didn’t throw up at all today, her new anti-nausea drug, Zofran, is doing wonders for her!  She did a pretty good job of taking all her meds today and ate a decent amount of food.  Her tastes have changed quite a bit, but we found something today that she definately loves – cheese sandwiches!

The dramatic part of the day was getting the dressing changed on her port catheter. 

 

 You can see here that there is a LOT of tape holding her needle in place.  All of that had to come off and it was a pretty painful process.  Fortunately, she doesn’t have to normally have that much tape on.  It’s only dressed like that when it is first installed.  Her new and all future dressings are much better designed.  Here’s what a port catheter looks like when it is “accessed” which means the needle is in.  This may look rough, but it is definately a blessing for her to have since she won’t have to be stuck over and over by needles drawing blood and giving her treatments over the next 2 years.

She’s still crying in this picture from having all that tape removed.  The black part with the white wings is the port needle, the other bandages are the insertion points from her surgery.

So, having cancer aside, things are really looking up and improving.  Hopefully we can go home tomorrow!