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.