Tuesday, January 31, 2012

Sarah's childhood bucket list...

Okay, so tonight was a difficult night. Actually, difficult isn't quite the word. I was ready to dump holy water on my kid's head and call in an old priest and a young priest. So, thank the Good Lord above that Nurse Kerry is her nurse tonight, and that she gets as much of a kick out of Sarah as she does, because she saw that I desperately needed a break and she all but kicked me out of the room and told me to take my time. I am ever so grateful, it was exactly what I needed. I am still contemplating the bean and cheese burritos that I saw in the vending machine downstairs. For those of us who live here, bean and cheese burritos are a rarity, hardly ever to be found in the vending machine; instead, there is usually empty holes where bean and cheese burritos used to be, and adjacent to that, some disgusting burrito combination that no one in their right mind would eat, like potato and green chili. But I digress...

As I was downstairs unwinding and contemplating purchasing the overpriced burrito I wasn't really hungry for at the moment but would deeply regret not purchasing later when I am starving and gazing longingly at the empty hole, I was checking my facebook, and I happened to see on the Huffington Post and article about Bucket Lists for your kids, a list of things you want to do or accomplish with your children before they get too old/too cool/too snarky to enjoy it. Having raised three stepchildren, I say this age is somewhere between 10 and 13, when you can't go anywhere without at least one kid wearing a perpetual face of having smelled old gym socks, and you wanting to smack it right off because while they are less than impressed with their environment, you probably put a lot of thought into the outing. Sarah just turned four. And while her circumstances prevent us from doing a lot of things that other four year olds can do, there is still a lot we can do together, a lot of traditions and fond memories from my own childhood that I would like to pass on. I thought it was a wonderful idea, and I thought tonight would be a perfect night to at least get started, if only to remind myself of why I adore this child as much as I do.

So, here goes, in lieu of my New Year's Resolutions, and in keeping with the one philosophy I did adopt at the beginning of this year, which was to live each day to the fullest and be present in the moment, I am at least going to attempt this list, adding to it as I think of new awesome things I want to do with my kid before she gets too cool for school.

1. Go to Disney World

This is something Sarah has recently said she wants to do, and so I figured it should get top billing.

2. Go back to the zoo.

Sarah's first (and last) trip to the zoo was when she was 18 months old. She remembers enough to know that she went, and to know that it was cool, but I don't know how much she really got out of it, and I'm pretty sure she was too young to learn much, so as smart as she is, I think it would be SO COOL to get her take on things now. Plus, since her favorite color is pink, she has a current obsession with flamingos, so I also think it would be cool if she could see one up close.

3. Take Sarah to an art museum.

Amazingly enough, this is also something she asked to do, and despite the obvious educational aspect that would appeal to any mom/teacher, I happen to love art, and this is something I would love to share with her.

4. Put Sarah back in ballet.

We signed Sarah up for Mommy and Me ballet classes when she was 20 months old, two weeks before she got diagnosed with ALL two years ago. She was so upset that she had to quit, and has been anxious to get back ever since. She is even practicing her "dance moves", connected to her IV pole and all...as soon as it's safe, I am signing this kid back up ASAP. She may never be a prima ballerina, but she will be the cutest and sassiest ballerina you've ever seen in your life, I guarantee it.

5. Take Sarah to eat shrimp at the Grand Central Market.

Perhaps this should say, "get Sarah to eat shrimp", but this is something that my dad did with my brother and me, and I never forgot it. The sights, the smells, the noise, sensory overload for a budding young writer.

6. Find a seriously awesome park, and have a picnic under a tree.
7. Visit all the "old haunts" my parents took us to as kids.
I think we are pretty fortunate to live near a city with so much rich culture and heritage. Olvera street, The Griffith Park Observatory, the Natural History Museum, the Children's Museum, the Discovery Science Center, these were places we frequented in my childhood, and I never felt "dragged". Both my parents, my dad especially, had a way of turning a simple trip into an adventure, and this quality, regardless of the destination, I want to recreate with my daughter.

8. Take a large trip with Sarah.
It has always been a dream of mine to go to Hawaii, and I have never quite made it, I am the only one in my family who has never been. I have barely even been out of the state. My dream is to take Sarah to Hawaii, but I think she'll be happy anywhere there's a Disney park! :)

9. Introduce Sarah to all the great movies of my childhood/adolescence/adulthood
This was something I did with my stepkids because (gasp!) they had never seen such classics as the Goonies, Gremlins, or even The Muppets Take Manhattan. Naturally, I had to remedy such a tragedy immediately, and I am proud to say that they are now well-versed in all of the classic 80's movies of my childhood. I look forward to recreating this with Sarah.

10. Have a campout in the back yard

This is something that we used to do often when we were kids, and something that Sarah has never been able to do for obvious reasons. Hopefully, when all of this is over, she will be able to know the feeling of sleeping out under the stars, with the promise of pink pancakes in the morning. After a backyard campout, my mom would always make me pink pancakes and eggs, and my brother got green ones. It is a wonder that I survived on such a noxious diet of Red Dye #7, but that was also one of the pleasures of our day, no one shoving organic crap down our throats. Our organic foods were raspberries picked straight off the bush, apples and plums eaten right off the tree, having only rubbed it on your shirt for a few seconds, still warm from the sun. Times are different now, and so are the kids, but I want my daughter to know as many of these simple pleasures as possible.

I am sure that I will think of more as time wears on and Sarah gets older and closer to the light at the end of the tunnel when any of this will even be a possibility, but it is a good solid list for now. The point is building wonderful positive memories, which I try to do every day. I love my daughter tenderly and I love her fiercely, in everything that I do. This is what I want her to know, these are the things that I want her to remember. The way I cook her eggs in the morning, the way i know her, the way I tell her every five minutes that I love her. The way I let her get away with things  when it is safe to do so, an extra five minutes before bed, an extra cookie after dinner when I said only one. Because the point is, the sweetest memory your children will have of you, is your presence, the mark you make on their lives. I intend to leave a big one.


Monday, January 30, 2012

Hello from the Hospital!

Okay, so I have finally found a way to blog from the hospital since they don't have wifi and my "smart" phone won't let me! This could get interesting...I am intrigued by this idea, because now not only can I blog more often when I am here for weeks at a time (instead of going AWOL for weeks at a time because I'm in the hospital with no wifi) but I can blog about the things I want to share as they happen, while they are still fresh in my mind. So, I am coming to you live via my laptop and an ancient ethernet cable that stretches clear across the room, and a physical therapy bench that I have turned into a makeshift desk. Today, after weeks of handling her chemo like a champ, Miss Boots has a fever, which spiked last night and never quite left. True to form, Miss Boots is playing on the floor with her Lalaloopsies as though she were sitting at home, wearing her favorite owl shirt and a red tutu. Her appetite is decreased, and at 1:00 in the afternoon, she has yet to ingest anything except her meds and the water she used to wash them down. I keep offering, she keeps refusing, and so it goes until about 10:30 at night when she all of a sudden eats an entire bag of popcorn and half a loaf of french bread...this is my daughter...

Other than that, it's pretty uneventful. The doctor says that the fever is almost to be expected since she's been neutropenic (that's fancy doctor-speak for "has no/low white blood cell counts") for about a week now, and that despite this and the bionic eye that refuses to go away (did I mention that because of low platelets she burst blood vessels in her eye, turning the entire white part a very disturbing and vampiric red?) that everything is okay. Now this is Dr. K., an elderly Hungarian gentleman who has been practicing for years and treats Sarah like a granddaughter, and sometimes worries more than I do about her. He says everything is fine, but there is something in his eyes that worries me, as though he is trying to convince himself. I suppose all it means is that for now, everything is fine, but we will be extra vigilant, just in case, which is fine by me. Sure beats the hell out of the rock star pediatrician who told me nothing was wrong and I was over-mothering.

The thing is, someone forgot to tell Sarah that there is any cause for concern whatsoever. As the doctors and nurses are "rounding", meaning that they are having a little mini-meeting to discuss the patients' progress and possible courses of action, he keeps looking through the glass doors at Sarah as he discusses with great gravity her arduous journey, her recent minor complications, and he sees her dancing, singing, playing with her Barbies on the bed, and a smile creeps across his face. Inwardly, this is a very sick little girl. Outwardly, this is a normal, funny, beautiful, incredibly SMART four year old. She is bossy and domineering, and she talks to me and the nurses like we're the help (don't worry, we're working on it, and she is improving!) but as Nurse Kerry put it last night after a five minute struggle to get her to take Tylenol, which is kiddie stuff compared to all the other crap that she takes with no problem, it is that spunk and fight in her that gives her the strength to go through this. That, and the wonderful, caring team that provides us with such loving care every single day, as well as all of the love and support from our wonderful friends and family. This is not an easy path we have to tread, and I am so thankful for those who have been there to help us through. We love you all! :)

More to

Saturday, January 14, 2012

Donate button...

In the first stage of Sarah's treatment for AML, a few people asked me about starting up a facebook page dedicated solely to Sarah and her progress, so I am pleased to announce the inception of Miss Boots vs. Cancer, Round 2, where I will be posting updates on Sarah's progress as she moves through the chemo treatment for AML, bone marrow donors and transplant, and beyond. At the behest of a few people as well, I have added to this blog a donate button that links directly to my paypal account for those of you generous folk who have asked about making financial contributions to aid Miss Boots and me in our fight. I have not tested this, so in case it doesn't work, my email address is molliecat2004@yahoo.com, and you can send money through paypal this way as well. The donate button does the same thing, it just makes the whole process a bit easier and more convenient. So there it is! :) I am not soliciting donations in any way, but if you want to help, there's the info on how to do it! :)

New Year...

Okay, so for those of you in the know, it is no surprise that it has taken me this long to get back to the page, since you already know that these past few months have been CRAAAAAZY!!! To say the least...For those of you not in the know, slightly in the know but looking for me to fill you in, or heard it all but don't mind hearing it again, here it is.

My mom's birthday was December 1. We went out with my grandma and my great aunt to celebrate, Miss Boots was well enough to tag along. We met at a restaurant that was a halfway point for all involved, in a mini mall in West Covina. We had a pleasant meal, and it was time to strap Miss Boots into her car seat. Now, since Miss Boots had been in maintenance for her ALL treatment for several months at this point, she had a sudden growth spurt and I had been fighting and struggling with her car seat for a few weeks since she no longer fit. My mom had promised to buy her a booster seat for Christmas, and since we were in a mini mall and a Target was within a short distance, my mother suggested we drive around to the Target and shop for a booster seat right then and there. We drove around, settled Miss Boots into a shopping cart, and proceeded to walk towards the entrance when my phone rang. I recognized the number as being the hospital where Sarah receives her treatment, so I answered it, thinking maybe they were going to change her appointment, or something else just as innocent. When I recognized her doctor and the tone of his voice on the other end of the line, I stopped dead in my tracks, still in the parking lot. This being a cold and windy evening, my mom took Sarah inside the store. The doctor informed me that Sarah had contracted AML (Acute Myeloid Leukemia), a secondary cancer which is much more aggressive and has a much lower survival rate, from the treatment for her ALL. He said it is rare that this happens, but that it does happen, and that it is treatable, but that her chances of survival are around 50%. He wanted us to come in the next day to be admitted to the hospital for treatment. I asked him how long, he said to plan for several weeks. I stood there for a second after he hung up, shocked, and in tears. I allowed myself a moment to cry, not wanting to frighten Sarah or my mother when I entered the store. After a minute, I entered the store and found my mother and daughter. I explained to my mother as calmly and as best I could what the doctor had said and what he wanted us to do, so we spent the rest of the shopping trip shopping not only for a booster seat, but for necessities for the hospital as well. My mother kept having to ask if I needed this or that, I was still in such a state of shock, I couldn't think about mundane things like cotton balls and q-tips. All I could think about was my daughter, how much I love her, how unfair it all is. She was supposed to be done in January. And somewhere within me, I had known. I had known, and I had dismissed it as pessimism, and banished the thought. Somewhere, whenever someone would mention the closure of her treatment, or my impending return to work, I felt uneasy, it didn't sit right with me, it didn't ring true that she would really be done, that this would be over in just a matter of months. It didn't feel over to me, and sure enough, here was the call from the doctor telling me that not only was it not over, it was about to get a hell of a lot more complicated. I had a 50/50 shot of keeping my daughter. She was not even four yet, and she has a fifty-fifty shot at surviving.

We completed our shopping trip and headed for home, so that I could pack myself and my daughter up in preparation for a month-long hospital stay. The next morning we checked in to the hospital, and chemo began immediately. Over a ten day course, Sarah received three different chemo drugs, three different antibiotics when the drugs caused fever and diarrhea, the diarrhea became worse with the antibiotics and it got to the point where every single diaper was full of diarrhea and we had to give her pain medication before diaper changes. Sarah spent her fourth birthday in the hospital as well as Christmas and New Year's. A CT scan revealed that Sarah had developed a bacterial infection called pseudopneumosis in her lungs that poses as pneumonia. More antibiotics which she HATES and fights with every dose. At the beginning of this month, we were granted a four day reprieve, and this past Wednesday, Sarah went back into the hospital for round 2 of her aggressive AML treatment. I was there for two days, then a cold I had been fighting got the better of me and I was forced to ask my mother to relieve me as my husband is also ill. I am currently doing everything I can to beat this cold so that I can get back to my daughter and help her through this second course. My mom reports that four days into chemo, she currently has no fevers and no diarrhea, and is eating decently, so that is a prayer answered in my book. She is still fighting her meds, but a session with a child life specialist revealed that Sarah does this because she is scared, and doesn't feel in control of much else right now. She is walking at a hobble right now, so she is being seen by a physical therapist, an occupational therapist for her writing skills, a speech therapist is coming Monday, and pain management and psychology are working closely with her. She is well covered and well taken care of. But so many people can look threatening to a small child, even if they are trying to help. I have tried so hard over the past two years to keep her feeling as normal as I possibly can, so all of these people coming in is like admitting there is something wrong with her. A lot to ask of a four year old. So we are fighting, together, to beat this monster called cancer that has tried to claim my baby not once but twice now. And we will continue fighting. It has been a crazy year, and my life has changed dramatically. I have lost people that mean a lot to me in the process. But my daughter has always been my first priority, and she is still here. She is still here, and the fact that she has so much energy to fight me, her grandmother, and her nurses about her medicine gives me hope.

It has been a year since I began this blog, as part of my New Year's Resolution promises to the committee. The committee has since fallen apart, my life has since fallen apart, so I decided that this year, I am not going to make resolutions that I am not going to even remember two weeks later. I am instead going to simply charge ahead and try to live this year with as much hope, love and gratitude as I can. We don't know how much time Sarah has. I don't know how much longer I get to be Sarah's mother. We could have a day, a week, a month, a year, a decade, a lifetime. We just don't know. That is in God's hands, and we just don't know how long we get. Even after the transplant, there is a chance it might not work. My life has become all about time. I am not thinking about the year ahead, I am thinking about now. Right now, this moment. This is what I have in my hand, this moment. I cannot think about the possibilities right now, the what-ifs, I will drive myself insane. All I have is right now, and right now, my daughter is alive. My daughter is fighting. Right now, my daughter is kicking cancer's ass. So if I resolve to do anything this year, it's to live each day like it's our last, because it very well could be. If this whole thing doesn't go the way we all hope and pray it will, I want Sarah to have had as full a life as I was able to give her. I want to know that I did the best I could by my daughter, that I was the best mother I could have been. I want to know that, either way. When I am planning her party to celebrate a year from transplant, and her high school graduation, her college graduation, her wedding, her baby shower, her grandchild's baby shower, I need to know that we lived every day loving, living, and appreciating each other as best as we know how. The rest will come unbidden and we will take it as it comes.