Worst...Idea....Ever...

Okay, so worst idea in the history of bad ideas, I decide in my infinite wisdom (insert sarcasm here) to go over the transplant road map and consent forms that were left for me yesterday to prepare for the meeting with the doctor on March 8, formulate my questions and just overall walk into the meeting with an air that I even remotely have my shit together. WORST....IDEA...EVER...

I'm not sure when would have been a better time to read them. It's not like I can concentrate and provide the attention that these papers require while Sarah's awake. And, it's not like she goes to bed at a decent hour most days. But the fact of the matter is, it wouldn't have mattered when I actually sat down to read them.Transplant papers are a dismal read.

 I know they are designed to give you a straight-forward delineation of all of the things that could go wrong, to cover their asses in case it does, which there is a 50/50 shot that it will. But me, I'm a visual person. When I read something, I am there, envisioning the situation vividly in my mind as though it is actually happening. And with Sarah's track record for being a walking Murphy's Law and having a propensity toward rare side effects (hello, secondary AML!), is it any wonder that I had a panic attack and/or minor heart attack when I read and envisioned all of these major possible and probable side effects happening to my baby? My baby who has already been through so much? Let me break it down for you, so you can further understand why I got NO sleep last night.

First off, here is the starting line up of the drugs they are going to be giving her pre-transplant when we get admitted on the 19th:

ALEMTUZUMAB (or Campath, I can't even SAY the other name)

Side Effects: Flu-like symptoms such as fever (please, she gets fevers on a random Tuesday), chills, shaking, nausea and vomiting. (Okay, nothing really new here, I can handle that.); Low blood pressure, low blood counts (white cells and platelets), weakened immune system, reinfection from previous CMV virus (I don't even know what that is, so I'm pretty sure she's never had it, cuz if she had, I would know what it is);

LESS COMMON: Fatigue, headache, diarrhea, rash

She will receive this drug for the first four days prior to the actually transplant. Premeds can be given to try to circumvent some of these, and again, this is nothing we've really seen before. Okay, we can do this. Moving on to the next drug...

BUSULFAN:

Destroys cancer cells by interfering with their growth cycle.

Side Effects:Low blood counts for 1 to 3 weeks after treatment (Okay. Nothing new.); Nausea, vomiting, mouth sores, darkening of the skin (again, nothing new.)

LESS COMMON SIDE EFFECTS: Diarrhea, Abnormal liver function tests, Hormonal changes, cough, shortness of breath,(still on board, no problem)

RARE SIDE EFFECTS: Scarring or stiffening of the lungs (wth?), cataracts (wha?) and seizures.

WHOA. Let's stop right there. A moment to take a trip down memory lane and recant to you a story that I have tried very hard to forget, as it still scares the Bejeezus out of me.

Sarah wasn't always sick. When Sarah was born, she was perfect. It was a perfect, normal pregnancy, one of those you see on TV with a glowing mother-to-be and minimal side effects, followed by a nearly effortless birth. That was me. It was the way I had always dreamed conceiving, carrying and bearing a child would be (Minus the stretch marks. I hadn't figured that into the equation, but it seemed like a small price to pay for the GORGEOUS child I got in return). She was born after only after only seven hours of labor, a perfect 9 on the Apgar. She was an easy baby, too. She never cried unless she was hungry or wet. She was alert and smart. She smiled the day she was born, on purpose. She rolled over at three days old. She said her first word at 3 months. For the first year, everything was beautiful and perfect. I tried my hardest to do everything right, to be the best mother I could be to this wonderful, gorgeous creature who was the manifestation of my heart's desire. I had one perfect year.

Then, at 13 months, she caught a cold. Not unheard of, it was early February, the other kids were in school, my mother and I were both teaching elementary school, colds were pretty common. Sarah almost never got sick, she had had only one other cold in her lifetime (not including the two that I caught while I was pregnant). This cold was bad. She spiked a seriously high fever, 103, and my husband and I bathed her, and he dressed her and held her while I administered Tylenol. No sooner had I turned to put the bottle away then he starts frantically calling her name. My husband is not like me. He is not given to hyperbole. He doesn't worry, he doesn't freak out, even when he should. So to hear that panic in his voice was an immediate alarm that something was very, very wrong. I turn around to see my daughter flailing in his arms like a fish. He rushed her into the living room and placed her carefully on the floor until she stopped seizing. Then she went unconscious. I mentioned earlier, my mother and I are teachers. We both know CPR. But I saw my lifeless baby and I froze. My first and only thought was, Oh, God, please. Not now. Don't take her from me. I lost three babies before she came. To have such a perfect, effortless pregnancy; a perfect, effortless delivery, and such a perfect and (nearly) effortless child for one perfect year, seemed like a miracle. A gift from God that I did not deserve. And I carried the fear through the back of my mind throughout that year that it would all disappear. So my thought in that moment was, Not now. Please, God, don't take her from me. Luckily, my mom kept her head, pushed me (gently) out of the way while telling me to calm down, and performed CPR on my lifeless child, who had stopped breathing. I got it together enough to dial 911, as did my husband and stepson (cell phones are WONDERFUL). They instructed us to lay her on her side, and after a moment or two of CPR, she came to and the ambulance arrived. We went to the hospital to run a gamut of tests, after which they assured me that there was no permanent damage, that what she had was a febrile seizure (a seizure brought on by a high fever to prevent damage to the brain), and that it happens more commonly than people might think, that there was no reason to worry about long term damage.

And sure enough, she has never despite all of the fevers she's had since, including the ones that helped us to diagnose her cancer in the first place, had another seizure. Still, more than all of the horrifying things she has been through in the last two years, the memory of that day still scares the Bejeezus out of me more than anything else. So nausea, vomiting, even fevers, bring it on. But seizures? Now you have my attention. Now, I am constantly trying to slow my breathing and heart rate in order to stave off the panic attack that wants to happen as I try to shove the memories of watching my lifeless child before me on the floor out of my head. And we're not even done yet. There's two more to go.

CYCLOPHOSPHAMIDE (or Cytoxan)

Destroys cancer cells by interfering with their growth cycle

Side Effects: Nausea/vomiting, loss of appetite (with Sarah, the loss of appetite is more common than the vomiting), hair loss (what hair?) and low blood counts for 1 to 2 weeks after treatment (so paired with the other one, I'll give her about a month to recover)

LESS COMMON: Blood in the urine (bladder irritation: scary as hell, but not the end of the world), metal taste in the mouth (Sarah freaks out when this happens, but she's dealt with it before, lots of Mentos and Biotene), hormonal changes, heart damage with high doses.

The last one scares me the most, but that's why they do the ECHO and the EKG before hand, to make sure that her heart is strong enough to withstand the chemo, and so that they can mark any changes right away. If she is not peeing enough, they can handle that with more fluid and even diuretics. She is in good hands. We can do this. Seizures are still scarier.

CYCLOSPORINE

helps prevent graft-versus-host disease (which basically means that the bone marrow from the donor will attack the cells in her body because it recognizes them as foreign), may also help to treat aplastic anemia (another life-threatening side effect) and used as a cancer-fighting medicine

Side effects:

Kidney damage (we're leading with that...wonderful), high blood pressure, increased risk of infection, tremor (shaking hands), hair growth on the face with long term use (like I said, I am very visual. Now I am envisioning my sweet little four year old daughter as the bearded lady at the circus). Thickening and growth of the gums with long term use. (Thankfully, she will not be taking these drugs for that long.)

LESS COMMON SIDE EFFECTS:

loss of magnesium in the blood (I'm not sure what that means, or what that will do to her, but I'm sure they have something they can do for that), increase of potassium in the blood (again, I'm sure that's an easy fix), nausea (given), headache, liver damage, seizures (WTF???)

Seriously??? More seizures??? Does giving her two drugs that can cause seizures at once increase her chances of having them? Will it increase the severity if she does have them? I am freaking the eff out. Then comes the consent form, with another chart with the drugs on it, the common, occasional and rare side effects, and the ones that occur immediately, soon thereafter, and later on. The immediate and prompt effects of the drugs are the ones I pretty much just described. Guess what the late effects are for all drugs involved?

Sterility. I believe I have mentioned in this post and in some prior that I lost three babies in two years before Sarah came, all before 9 weeks. I can deal with the possibility of never having grandchildren if it means that my daughter gets to stay. But what about her? Sure, there is always adoption, a perfectly viable and fulfilling way to create a family. I would like to think that I have it in me to love an adopted grandchild as much as I would love a biological one. But the pain of not being able to conceive or sustain a pregnancy is a pain I know all too well. I don't want that for her. I am almost praying she won't want kids, but seeing how she is with her dolls, with other babies, I  highly doubt that. And my heart aches for the woman she will become one day who will hurt as I have hurt, having to face the possibility that she may never hold her own flesh and blood in her arms. After all she has been through already, it is only human that I should have the desire within me, the hope that the rest of her life would go smoothly. That she could live a "normal" life and never be touched by infirmity again.

And that's the dream. That's what you hold on to in times like these, the visions of her in her graduation gown, in her prom dress, in her wedding dress, in a hospital gown holding her newborn child. You don't think about the fact that all this crap they are pumping into her may be doing her more harm than good, if the ultimate goal wasn't to keep her alive. But as a few wise women in my life have told me, you have to trust. You have to believe. I have to believe in God who has gotten us this far, who chose me to be Sarah's mother and who chose Sarah to fight this fight. I have to believe in my daughter, who eats fucking nails for breakfast and hates the word "no". Tell her she's not going to live? Tell her she'll never have a child? I don't think so. My money's on her. If there is anything I know about my daughter, it's that she will find a way, one way or another, to get what she wants, and she has a way of bringing what she wants to her, without even trying. The law of attraction is alive and well and manifesting itself like crazy in and through my daughter. She is a determined little thing. A stubborn little thing. Especially when it comes to something that she wants. She gets it from her mother. 


So middle of the night freak-out session notwithstanding, I know that we will be okay. All of it seemed overwhelming and scary at first, and not only did we make it through, but may I just say, Miss Boots KICKED ASS! It will be fine. This morning, she lay next to me and I noticed that her hair was starting to grow back from the last treatment cycle. I started envisioning Sarah in her little school uniform, sitting before me in the morning as I braid her long hair or separate it into pigtails for school. All of those gloom and doom details didn't matter, because in that moment, I could actually feel those silken strands between my fingers. And I was thankful, for that moment, and for this.


Miss Bossy Boots' motto is "Faith, Trust, and Pixie Dust." And in the end, isn't that what it all boils down to? We need to believe, and with a little bit of magic, we can fly. 

BMT, coming up....

Okay, so that totally sounds like a sandwich order, but for those who aren't as hip to the lingo, BMT is short for Bone Marrow Transplant, and in case you haven't heard, Miss Boots has found a 10/10 perfect match--something they told me was next to impossible from an unrelated donor. A few weeks ago when I spoke to the BMT coordinator (STILL sounds like a sandwich!) she said that they had found a donor who was a 9/10 match, and a back-up who was an 8/10, and she assured me that the 9/10 was "as good as it gets". It was the best we could hope for from a non-related donor, and we were happy with that, as long as we had a shot. Then yesterday, I get the miraculous call from the BMT coordinator, delineating a bunch of tests they want to run on Miss Boots pre-transplant, and she says, "Oh, by the way, did I mention that we found a 10/10 donor?" I ran through the previous details she had given me, and she confirmed that, yes, while the 9/10 was the best that we could hope for logisitically, a 10/10 miracle came through sometime in the last week, and we are ready to go.

Today has been a blur of tests and thankfully, Miss Boots got a good night's sleep last night and was in a good mood, so she handled it all beautifully. When the technician came to do her ECHO, basically, an ultrasound of her heart, she chatted jovially with her and insisted that she turn her heart pink (last week, Sarah had another ECHO done, and the same technician amazed her with the many different colors in which she could display her heart on the screen. Guess which was her favorite?) She played with the physical therapist without throwing a tantrum or complaining. She lay extremely and uncharacteristically still during her EKG, even though the 20-some-odd wires they had stuck to her were kind of freaking her out. She sat quietly and as patiently as possible waiting for her x-ray, only asking me twice what was taking them so long (a RECORD, if you know Miss Bossy Boots) and didn't freak out at all once we were in there. She even posed for a picture while we were waiting!

It was only when I had let her stay up a half an hour past her bedtime and I asked her to clean up her toys did she start to throw a fit, because her very complicated Lalaloopsy story line would just have to wait until tomorrow. I don't understand why this upsets her so much. I mean, Rosy Bumps n Bruises can still change her specialty and be a vet tomorrow, right? So, a quick sponge bath and two stories later, she is finally asleep, as well should I be, because they want to wake us up at dawn (okay, 8:30, which is just as good) to perform a kidney function test. At the very least, it is the final test and then we can just go back to waiting for the unnecessary CDIF results to come back (again) so we can get the hell out of this room.

A Word on the CDIF, in case you're confused. CDIF is short for Clostridium Difficilie, a bacterium that resides in the intestines and causes diarrhea when competing bacteria are wiped out by antibiotics. It is resistant to alcohol gel and highly contagious. But here's the thing. Sarah had it once, a long ass time ago. This time around, they are giving her high-dose Ara-C, which is known to cause fevers. Not to mention that Sarah is prone to fevers anyway. But, since they can't be sure that it's the Ara-C that's causing the fever and they want her to be covered in case she has something else, so they start her on antibiotics automatically. Now, certain antibiotics have a natural side-effect of diarrhea. So, she gets the fever, they give her an antibiotic, she's okay. But the fever persists (because of the chemo), so they add another antibiotic on top of the one she's already taking. Her diarrhea gets worse. Now, they think it's CDIF and they have to run tests, but while they do that (and might i add that the tests take FOREVER to come back) we have to be in isolation which means my little social butterfly who loves her walks in the hallway and playing with other kids in the playroom is confined to her room and doesn't see anyone but me and medical staff for days. FUN STUFF. And I know she doesn't have CDIF. I know my daughter, I know the effects these meds have on her, and I am even more vigilant now that what I notice or don't notice could threaten her life. But they have to be sure, and I suppose I'd rather be safe than sorry.

This cycle of chemo was much shorter than the two others, just three days, so the chemo part is over, and now (other than the @#$%ing CDIF) we are just waiting for her counts to drop and come back up again, so that hopefully we can spend at least a few days at home before transplant. Sarah is scheduled to be admitted for transpant March 19. Then, according to the packet that was left for me while we were down in X-Ray and further explained to me on March 8 when we meet with the doctors, it looks like they prep her with a regimen of drugs before the actual donor transplant takes place on March 28, 2012. A day that will forever be a holiday to us, because it will be a day that a random stranger gives us a miracle.

It all seems surreal and somewhat overwhelming, but so did everything else; her initial diagnosis with ALL at just twenty months old. God. Twenty months. She was still a baby. But we made it through all of that. Then, a few months ago, she was diagnosed with a secondary cancer, AML. And it all seemed scary and new and overwhelming. But here we are. We made it through that. This is it. This is the phase that will save my baby, just one more thing to get through, but the most important, the most grueling. We can do this. Bring on the BMT!

Sarah's Childhood Bucket List, Part Deuce...

Okay, so I knew when I was writing part one that I am way exhausted and was so not thinking clearly, as is wont to happen when you have a really important list to write! So once I had a chance to think about it, and spend some time with my gorgeous little girl when she is her happy, smiley sunshiney self and not the little gremlin she has been the past few days, I of course came up with some things to add to the list, so here goes:

11. Go to Disneyland for every holiday:
Before the days of annual passes, Disneyland tickets were way out of the price range of a struggling family of five, yo. So although we have taken the kids to Disneyland our fair share of times over the years, it is usually reserved for special occasions like the kids' birthdays. Now that we have the annual passes, I want to share the experience of every holiday at Disneyland with my baby for the first time. Halloween, Christmas, New Year's, I want to do it all. Granted, this one will take at least a year to fulfill, maybe longer, but I am banking on the fact that Sarah will be around and up for it.

12. Get on every ride at Disneyland at least once.
I am ashamed to say as a Southern Californian for most of my life (there was that stint in Utah for about five years in my childhood) there are still some rides I have never been on. That's right. Never. Some because they scared the bejeezus out of me in my earlier years, some because I just didn't feel the need to get on, but I figure if my tiny little four year old can brave the enormous ferris wheel in the SLIDING bucket at California Adventures, I'd better damn well suck it up, and since Disneyland is our favorite place on the planet (besides the bookstore) I figure we'd best know it stem to stern.

13. Disney on Ice
Miss Boots wanted to go this year and couldn't for obvious reasons. Our prayer is that this transplant takes in March and by the time this comes around again, she will have a cute little pixie haircut to go with. It breaks my heart to see her watching it over and over again on youtube. As soon as it is humanly possible, I am taking her for real!

14. The circus
Having a child get sick before their second birthday sucks because by the time she was old enough to do anything and enjoy it, she was too sick to go. The circus is one of my earliest memories. I was about two or three, watching the circus on tv in my grandparents' bedroom, bouncing up and down on the bed and watching a black panther walk across a tightrope. I got all excited when my grandfather told me that it was "Vety", my grandmother's black cat (the cat's rightful name was "Sylvester", we called him "Vety" for short). I got excited and then confused because I had just seen the cat go underneath the bed, so I leaned over the side of the bed to look for the cat, and BAM! My first head injury...( I think, anyway!) Head injury aside, watching that panther cross the tightrope is one of my fondest childhood memories, maybe because my grandfather died not long after that, maybe because I was happy and innocent like a child should be, but whatever the reason, I want my child to experience just a bit of that magic. Plus, she asked to go, and what the boss wants, the boss gets (so long as she behaves...)

So there are the ones I came up with, I will amend the list as other things come up, but this is a good solid list to start with for now. I'm kind of excited! :)

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.





5.

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

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.