Wednesday, October 21, 2009

103 degrees in the shade....

Lily bugged me all yesterday morning about making her "punkin patch". In our house they are no longer pumpkins, they are "punkin patches". She wanted to carve her punkin, but I convinced her we could do arts and crafts punkins instead. I figured that homework time would be the best time- you know keep them all busy at the same time.  Lily stuck features on hers and while I was helping Bella, she fell asleep on the couch. I was worried because earlier she had complained that her neck and head and legs were hurting.  I was hoping it was a growth spurt.

In adrenal sufficiency land, illness is tricky. A simple cold could knock her out if we don't get the cues and up her meds accordingly. She woke up screaming and when I felt her, she was burning hot. The mommy thermometer guessed 102. It was 103.7. I stripped her down and called the clinic. It was 4:06pm. No one was there.  I gave her a triple dose of hydrocortisone and called the on-call doc.  I knew what he was going to say- take her into the ER. UM, yeah . H1N1 anyone? No thanks.  But he says he will call ahead and that should expedite the process.  Any of the other kids, I'd throw them in a tub and ply them with tylenol and wait an see.  Lily is the great unknown. It could be an infection in her port, it could be an adrenal crisis, it could just be a virus.  So just on the tail of a great big talk with the kids about how I will be proactive at treating Lily no differently than them....there you have it.

I call Phil, he is on his way home, he offers to take Lily. Um Ok. I suck at ERs. Plus he always gets out of there in 1/3 of the time I do. He gets home grabs her and they are off.  I begin the disinfection process which keeps my hands and mind busy from the negative worrying I would be achieving in the waiting room.  I have also decided that all I need to do when someone spikes a fever is walk around them saying emergency room, doctor's office, emergency room, doctor's office  and the fever will  immediately disappear- or fade within 42 minutes which is how long it takes to get to the hospital with moderate traffic flow.  Phil calls from the hospital- her fever was officially 103. I don't know if officially means "done by medical staff" or "in a place we prefer to not have things stuck"  but obviously Phil was not chanting on the way to the ER. That is probably why he gets out quicker- they think I'm mental and have to observe me for awhile to determine if I am safe to send poor recovering cancer patient home with.  So in cases like this we are still under the oncology umbrella. Until she is at least a year out, we call the onc docs first, act later. 

I was nodding off as they returned almost 6 hours later with 103 degree fever, tylenol, and the handy ER print out that tells you how to care for your child with "URI (upper respiratory illness) also referred to as THE COMMON COLD". Really? Are the bold letters necessary?We didn't take her in with a flipping runny nose- she had almost a 104 degree temperature- and that was "officially" . She did get antibiotics though. Last time we took her in they didn't give her any and her onc doc about had a coronary. I guess it's protocol with these patients to antibiote now, ask questions later. That lets you know how quickly things could go south if she gets an infection. Fortunately she's not immunosupressed at all and other than her lack o adrenal hormones she has been pretty healthy. You know other than that and that pesky cancer.  

WE tuck her in and I try to sleep since I had a meeting this morning at Tripler at 0dark00. Bella is coughing non stop and since they sleep together I check on them every so often.  I finally fall asleep and hear Lily yelling for me.  She's thirsty. And wants to watch spiderman.  By the time I get water and Spiderman, she is back alseep.  I feel her and she is on fire again so I wake her up to take tylenol and get ready for my meeting.  Of course by the time I am out of the shower- all 3 girls are up, requiring breakfast and liquids.  I get a later than planned start out the door and am rewarded with 2 accidents and a stalled vehicle on the commute. It is just one of those days.  The meeting went well- it was an informal session with residents about parental expectations and professionalism. Although I felt like I really didn't have a leg to stand on with the whole- be on time advice, so I let that slide. All the while I am glad that I have an amazing husband who is at home with the sickie and offers to go to the ER even if the house looks like a hurricane hit by the time I get home.  I also was reminded what an amazing surgeon Lily has, she coordinated and led the meeting. I was thrilled to see she is mentoring? guiding? I don't know the right word there these young medical professionals. She is the perfect mix of brains and personality and I couldn't think of a better doc to be teaching about professionalism. 

I get back home and there is a random call from our auto insurance company. Apparently the girl who bought Phil's beater piece o metal back in April crashed the bad boy and thought it would be a good idea to claim it on our insurance. Like I said, one of those days. It does not bode well that it is only noon.  In about an hour, Lily and I will head back to the clinic to see if she's going to live. I suspect she will, for now. For now. Plus I the 2 hours I spent in the car this morning gave me lots of time to debate whether it was the changing of the blog or overusage of the word normal that landed us in this little predicament because for us there is no longer such thing as "just a virus".

Sunday, October 18, 2009

Monkeying around.

I've given it a lot of thought. Since we are post treatment and the updates on Lily are further and fewer between- I'm going back to my old blog.  It was Adventures in Potty Training and since we are done with that chapter in our lives(mostly-ish) I have renamed it Monkeying Around.  I will keep this one and use it to update Lily specific stuff....If you want to see what's up with the Mallory's- come on over and check it out!  There will be a link back here in the side bar which will say when the last update was.   

I have also been toying with trying my hand at turning Lily's Blog into a book.  If for no other reason than to have as a personal record. There would be much cutting and pasting, editing and some new writing involved.  I want to do it while it's still fresh, and now that we are out of the throws of it and I have sooo much spare time on my hands(haaaaa haaaa haaaa) I started reading through it.  Yep. It's still fresh.  I do have to say though I am a much "better"(funnier?) writer when I am extremely stressed, slightly sleep deprived and totally annoyed- all internal editing goes out the window! 

Anywho- check out the less life threatening day to day nonsense we call life in the Mallory house!

Saturday, October 17, 2009

Cancer Awareness

I find it hard to believe that anyone does not know that cancer exists. But of course that may be because it is an ever present factor in my life.

We had another check up for Lily last week- she is doing very well. Her doc assures me that she looks normal and her face does not look 'moonlike'. She is an eating machine and is growing like a weed. Her doc also mentioned that we need to get going on screening for the other kiddos. Ugh. An evil necessity. Screening for cancer is 100 times worse emotionally than a gyn or turn your head and cough exam. But early detection is the key. So we will do it.

For the kids, it will be minimally invasive and based on immediate family history. They will each get routine bloodwork and Brain MRI's as well as abdominal ultrasounds. The ultrasounds are nothing- Phillip is an old pro- he also showed no concern about the MRI- his comment was"As long as they don't have to shove that tube down my nose, I'm fine". Kiera's eyes got wide and I used a cookie cutter, little people and my phone as an example. Her biggest concern is that it not be louder than daddy's music. I can pretty much guarantee that, but I personally would prefer daddy's music. Phillip and Kiera are going to do scans without sedation, but Bella and Lily will still require sedation. I don't like that part. Again, necessary evil.

It's part of our new routine. I am treating them as a routine doctor's appointment. We have to, this is going to be their routine. I don't want them to live in fear of doctor's or cancer, I want them to be aware. We'll be starting in November. Of course my concern was that both my dad and brother were diagnosed in November and I may be tempting fate- or I may be relying heavily on my angels to come through. There never will be a 'better' time.

The psyche is a funny thing. I never understood the bury your head in the sand approach until I was about 2/3 the way through my dirty dozen. The dirty dozen is what I refer to as the tests reccommended for screening as adults. It includes a routine physical, bloodwork, a gyn appt, dermatology appt. endoscopy/colonoscopy, Mammogram and abdominal ultrasound . It's A Brain, spine, breast, and screening MRI. And last but not least the PET scan. For those who have asked- isn't there a test for cancer yet? The PET scan is the closest thing to it. It's not useful in children due to the way it works. You are injected with radioactive glucose. It's low dose- really short half-life. The idea is that glucose(sugar) is taken up more quickly by rapidly multiplying cells- cancer cells are rapidly multiplying cells. In kids- too many of their cells are rapidly multiplying since they are still growing. This is the test that put me over the edge. The test itself is like a standard MRI or CT- a little bit trying for your average claustrophobic, but it's the hour of complete motionless, quiet time you are forced to endure after being injected with radioactive glucose. Time that you pray for every day suddenly becomes a curse as all you can do is pray for an hour that none of your cells latch on to that glucose. It became abundantly clear to me that I wanted to live. Not in the live or die sense, but that I didn't want my life to be on hold for all these tests. The stress alone of them could take months if not years off the big picture. I don't want my kids to go through that. Experience is ever enlightening.

The best answer I've found is to treat this as normal. No sense in treating it like a major production if it's something that's got to get done. Getter done. It's more of taking life philosophy and injecting it into the situation. Everyone has a routine that works for them. Each routine includes things we would rather not do, but have to nonetheless. This is part of our new routine.

Thursday, October 8, 2009


Lily has survived cancer for one year today. 365 days ago, Lily, Phillip, and I walked into an ultrasound and came out with the weight of cancer on our shoulders. There were moments that time stood still and tomorrow couldn't come fast enough. Yet here we are.

A few months ago, I thought about this day. I thought...we are going to throw a big party and celebrate. But here I sit not so sure I want to celebrate this day our lives were changed forever. I am not so sure I want to celebrate the thing that made this year the toughest year I have ever had- and I've had a couple really tough years. DO I want the kids to celebrate this thing that put a cloud over their year? Do I want Lily to celebrate the thing that caused her so much physical and emotional pain? As we plug along finding our normal again, I'm not so sure I want to celebrate something that takes us back to that day. Had I not been adamant that something was wrong, Lily may not be with us today.

And then I think, why shouldn't we celebrate? Lily is a survivor. We are survivors. We live on with the disease and embrace life. We celebrate life. Cancer is horrible, but no one lives forever. Accidents claim loved ones every day. Other diseases and sicknesses ravage people all the time. If anything, Cancer is a reminder to tie up loose ends and keep them tied- you never know when that knot will become your life line. But like any other anniversary or celebration, is one day a year enough? Why not celebrate everyday? As any survivor will tell you, reminders of the disease are everywhere. Pink ribbons, yellow bands, lemonade stands, and fundraisers. These reminders are symbols of survivors and memories of fighters in a battle that is far from over. We walked into Chili's a week and a half ago and every wall, the back of every booth, and every window was covered in colored chili peppers. I had to fight back tears because every chili pepper represented not only a generous donation to St. Jude's but someone whose life had been touched by a survivor or a fighter.

So, I've taken a few moments and reflected. Cancer is part of our lives now. But it will have to wait in the wings for now- we've got too much living to do. I think the best way to celebrate today is to have a regular average day. Have you hugged a survivor today?

Wednesday, October 7, 2009

Heigh Ho, Heigh Ho...

The kids are watching Snow White, so I have just a few minutes to rest. I have countless entries sitting in a queue. They tend to drone on and on about trivial stuff. It's not very entertaining. The good news is that is much appreciated. For now I will have to make up entertaining stuff and that is Ok by me.

Lily had her hearing appointment. Her hearing has not gotten worse. Yea! She also had a flu shot and blood drawn, and the flu shot was way more traumatizing than anything. She is round and bubbly and I am just enjoying having Lily back. There are major ups and downs and some residual goop from the past year's exploits- but all in all I think we are fairing pretty well.

Our first roadblock to tackle (and in Lily's case, retackle)was night-time potty training. I am furiously knocking on wood as I announce we are done potty training. That is to say, I have been trained to not give them fluids after a certain time, ensure they void all liquids before bed, and not worry about losing sleep over bedding changes. I do believe that kids potty train when they are ready. I believe that most kids will be 3 before they are ready. More often than not the training that occurs before hand is that a parent is trained to read the cues and usher the child into the loo. Either way, when both parties agree on readiness, training is complete. In our case, we ran out of bread, milk, and pull-ups. Night time potty training took a seat on the backburner a year ago. I asked the girls if they were ready to be big girls and sleep in their under wear. They agreed. That was a week ago and every morning they have woken up dry. I'm sure we will have our moments- but all will pale compared to trying to keep Lily dry and hourly bedding changes through chemo. And That is my excitement for this week! Yea!

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)