On Pins and Needles

October 19, 2010

My friends, I had every intention of updating you last week - had the blog post titled and one sentence written. But then my bad attitude got the better of me and I thought it best to keep the nasty, vile thoughts I was having about the universe to myself. I'm making an effort to lose my "the universe hates me and my family" attitude through an addiction to a new ball swapper game on my iphone and high levels of cookie consumption. The results of this radical "therapy" are positive as here I am to give you a long overdue update on my precious girl.

The new chemotherapy regimen was rough. It was the first time we ever saw chemo actually make Lois sick. She received a new drug for two hours every morning, followed by 2 hours of fluids to flush it out of her kidneys, and then 2 hours of good 'ole Ara-C (the drug she received in all 6 of her previous treatments). The new drug - one that our nurses had never heard of nor ever administered - was nasty. Before it started to drip, she received Dekadron to try to prevent an allergic reaction, and Zofran AND Ativan for nausea. While it was flowing, Lois was hooked to machines to monitor her heart rate, respirations, and oxygen levels. She had to have her blood pressure and temperature taken every 15 minutes during the infusion.

It was hard core.

The side effects that can take place during infusion were serious (hence all the monitoring) but thankfully Lois managed to avoid the serious stuff. But she fell prey to the nausea, the lethargy, and the shakes. It was hard to watch. But by the time the fluids finished four hours later, the worst was over and the rest of the day was manageable. One morning I had to take Mac to his 15 month check up so YaYa pulled hospital duty. She didn't run screaming from the room when I got back, so it couldn't have been too bad. There's nothing that the YaYa likes more than just holding Lois to her chest - and during this treatment, Lois was happy to oblige.

Five days later we came home and miraculously, Lois almost immediately perked up. We had a few nighttime dirty diaper incidents that could probably be reported to the Guinness people. We found her on several occasions doing the backstroke in her own doodee. It was rather pitiful because all Lois wanted to do was to be cuddled - but she was literally covered from head to toe. The washing machine and the bottle of bleach got a good work out for a few days. But Lois was unbothered and happy as a clam.

But of course, as is the usual for the Hogan family, this is where we insert a bit of drama.

It's just how we roll.

Lois and I headed to the hem/onc clinic last Friday (October 8) for our normal, bi-weekly blood check. When I took Lois out of her stroller I knew she had a fever. For a few minutes I considered keeping this little tidbit of information to myself in the hopes that maybe she just got hot in the car. But then I realized I was in a waiting room full of neutropenic kids, and the one thing they didn't need was a kid with a fever in their midst. I got the attention of a nurse passing through and we were whisked to the back and stuffed in a room with a fever of 100.7. Lois was strangely happy - ready to eat a snack and watch Elmo - so she and I and my pouty lower lip got comfortable in a chair and chilled out to the lilting melody of Elmo's song. It was five minutes later when I realized she no longer felt hot. When her nurse walked by, I grabbed her - and Lois's temperature was suddenly a cool 98.1.

I wanted to cry.

Not from relief (although that SHOULD have been my response). But rather out of sheer frustration because I knew those few moments when she was 100.7 would land us a ticket upstairs and 48 hours minimum in the hospital. Ugh. Say it with me.

UGH!

If I could take just a moment to go off on a bit of a tangent, can I tell you how much we love the nurses on the seventh floor of the hospital? It isn't really just the nurses who have taken a liking to my girl. It's the security guards, the housekeeping folks, the nursing students. They are always so happy to see us, it makes it hard to be TOO terribly annoyed about being there. They take good care of Lois - and of us. They are considerate of my constant questions and requests. And honestly, they are just good people. People that I know want to see Lois get well as much as we do. They make being there bearable.

But I still wanted to take a butcher knife and stab random people as I made my way there.

At this point, Lois had zero neutrophils, those pesky little infection fighting white blood cells. This is not a good way to be, people. You are a sitting duck, vulnerable to any bacteria, virus, or fungus that just happens to be floating around. When a fever occurs, they draw blood cultures to see if anything "grows." If so, that's a bacterial infection and although dangerous, can be treated with antibioitcs. Even though Lois presented with no symptoms other than the phantom fever and a strange rash, they started her on broad spectrum antibiotics immediately as a precaution. Usually, neutropenic fever is the result of some virus - which, of course, wouldn't be touched by an antibioitc. Most viruses aren't life threatening to Lois, so you really just sit in the hospital, treat the symptoms, and wait for the virus to run it's course. Sure, there are a few viruses that are extremely dangerous. Anyone want to try to name one?

I'll wait.

How smart you are, blog readers. RSV - big time, bad news stuff. Can, and often does, turn into pneumonia. Anyone else?

Pneumonia! Yes! There is a viral pneumonia. We've been there and would rather not go back. Thank you.

Meningitis? Yikes! Did you really need to go there? Talk about life threatening! But it's rare. So let's not even give that one a minute of our time.

So the prevailing thoughts were that Lois had a virus and we'd wait and see what the next day would bring.

That night she busted out another high fever that almost immediately dissapated. Weird, no? And the rash got worse. Her blood cultures grew nothing, but that late night fever bought us 24 more hours in the slammer.

The next day the rash was awful and nothing they were giving her for the itching was helping. She was completely and utterly miserable - and Lois is NEVER miserable. It was hard to watch. The next morning during rounds, the doctors had a nice discussion about the drugs she was taking and suddenly all attention turned to fluconizole - diflucan - an atifungal she was given when discharged from the hospital after chemo to prevent a fungal infection. It can cause an itchy rash. Of course, they stumbled upon this 5 minutes after she had received her daily dose of the stuff. But that's usually how things happen in the hospital.

After a double dose of Ativan finally knocked her itchy ass out that evening, and she did not receive any more fluconazole the next day, she was on the mend and we were sent home. I was bitter because I just spent four days in the hospital for an allergic reaction, but so grateful it wasn't any of the awful things you conjured up in our "guess the dangerous virus" game.

Since arriving back home Lois has been 100% her old, spunky, smiling, absolutely delightful self and I've relished every moment I've spent with her. She really is an amazing creature.

You think so too, don't you?

Saturday was Lois's 3rd birthday and I didn't come here to talk about it - didn't really even mention it on Facebook - because I was convinced that if I made some kind of fun birthday plans, Lois would get a fever. So I didn't.

I did however know that the YaYa and Pops were going to breeze through town on their way to a meeting in Charlotte. And I knew that Aunt Marpa was going to make a big brunch for them. And I did happen to make a french toast casserole the night before just in case I decided to drop by the brunch. With Jay. And Mac. And Lois. And a birthday cake.

That's right. I played a big, nasty trick on the universe. And it WORKED!

Lois got to celebrate her birthday with the people she loves best: Momma and Daddy, her brother, YaYa and Pops, her Aunt Marpa and Uncle Scootie, Cousin Andy......

and her birthday buddy, Cousin Maggie. Did I mention that they have the same birthday? Did I mention how much my sweet niece LOVES it that she and Lois have the same birthday? Amazing that Maggie - and her parents - are not just willing to share her birthday with Lois, but think it's just as special and amazing as we do.

The cake itself was a bit of a disaster. I always make Lois a giant cupcake cake - which has gone off without a hitch for the past two years. This year, after a particularly disasterous incident involving an offer to make a giant cupcake for Anna's birthday (Mac's wife -to-be) where the icing slid off the sides in the Richmond summer heat and the entire thing threatened to topple over as I drove across town, I decided to try a "sturdier" cake recipe. It was delicious, but apparently it would have preferred to be served straight from the pan. It didn't want to slide out. The top broke into 15 pieces. The bottom came out in two large chunks which I plastered together with icing, turned upside down, and iced with enough cherry vanilla icing to pave a sidewalk. Add some piped white chocolate flowers and some candles and voila! It tasted great even if it's looks left something to be desired.

I must admit, I spent much of the day wondering if I would get to make a cupcake for her fourth birthday. Please???

And now on to more serious matters:

We found out last week that Mac is NOT a match for his sister. Shortly after this news was delivered to me, the fish bowl (area in the clinic where kids and parents come and sit to get blood, chemo, etc.) miraculously emptied and I felt free to have a quiet little cry while I held my girl and wondered what in the world I had ever done to deserve this shit sundae I'm currently being forced to eat. We all hoped Mac would be the silver bullet we needed. Alas, it isn't to be and Jay and I are looking into how we can send his cord blood to the bank so that maybe it can be used to save another child's life.

Surprisingly, I got teary while typing that. I feel cheated.

Jay and I have been swabbed and are currently undergoing testing to see if maybe one of us is a match. The chance of that is even slimmer than Mac's chances, but it's worth trying. At the same time, a search of the cord blood bank and the bone marrow registry has begun and hopefully we will know soon if a preliminary match has been found. It's something for you praying types to pray for, and for the rest of you to keep in your thoughts. If you haven't already joined the National Bone Marrow Registry, I hope you'll consider it.

www.bethematch.org

Tomorrow Lois will have another bone marrow aspiration which will tell us if she has managed to get back into remission after just one treatment. I can't begin to express to you how important this is. Lois MUST achieve remission before we can proceed with a BMT (bone marrow transplant) and she needs the BMT in order to survive. If she can't achieve remission we will have no other option than to just keep hitting her with higher and higher doses of chemo which will eventually kill her heart, liver, kidneys, and lungs. I can't imagine being doomed to that kind of fate. We need a remission and we need it now. Of course, tomorrow we will only receive preliminary results. It will be several days before we know for sure if she's made it to the promised land and is cancer free once again.

So we wait. On pins and needles.

Lois is back to her normal self - a bundle of smiles who radiates joy with every breath. I feel like the Lois who is here today is a Lois we haven't seen in quite some time. She's happier, spunkier, has a better appetite, and is more even keeled than even the Lois who was declared cancer free for two weeks. I kept that tidbit to myself - afraid that if I asked Jay what he thought he would dash my hopes. But tonight at dinner while Lois was shoving baked beans and homemade burgers into her mouth hand over fist I spoke aloud what I'd been thinking for days, and Jay agreed. Perhaps this is the evidence we need to feel good about tomorrow's test. She's showing us the way once again, and with every fiber of her being, she seems to be saying that everything is going to be OK.

I love that kid.

For those who are wondering - yes, there is another child in the house who isn't as ignored as you might think based on the subject matter of the past several posts. Mac is 16 months old and couldn't be more different from his sister - sometimes in good ways, and sometimes in some not so good ways. For the last few months of Lois's treatment I worried more about Mac most days than I did about Lois. But those worries will wait for another post. He deserves more air time than he's been getting.

But DANG! Is my boy cute, or what??

Wilma, Double A, Miss Judy, Evelyn, and all my other friends who have a hotline to the man upstairs, please spare a moment tonight for Lois. Your kind thoughts and positive energy surround us always - it is a palpable presence in our lives and we are grateful beyond words for your support.

Come on remission!!