Two years ago today Catherine began a Phase in her protocol called Interim Maintenance. On that night she took her 1st dose of 6-MP. Tonight, she took her last. I'm not quite sure how I feel right now. While I put the pills together in the fruit roll-up, there was a strange feeling in my chest, and then when I put her to bed I congratulated her on finishing up her treatment. My eyes welled up with tears as they are doing right now and I don't know if they are tears of joy or tears of fear. Probably both. Elated that we are done giving her these drugs, but frightened that we won't be doing so anymore. I think only people who have had cancer (and those very close to them) understand this weird feeling. You see, cancer treatment is like a tight rope act and the chemo is the safety net
below you, it's supposed to save you. Well, that safety net has been taken away from us tonight and it's scary. We just have to trust that all the medicine we have given her has done its job. Dr. Joe has told me so many times that this day would be as hard if not harder then the day Catherine was diagnosed and, as always, he is right. Just last week he told me that her cancer will be a part of our lives forever. The fear will never go away. He always says she will call me up one day from college with a hangover and I will want to bring her in for a count check. My first thought is always... good, you think she'll be cured and make it to the college years (morbid I know). That said, I absolutely hate that cancer has become a part of our everyday vocabulary that my
kindergartener and
pre-
schooler use those words in the same context as a cold or an ear infection. I hate that it has put the thought in my head that I could possibly outlive my own child (we all could, but I am just acutely aware of the fact), that her body has gone through so much more in the past 2 years than mine has in 37 years. I hate what it has done to my daughter. Before this, she was a very active
pre-
schooler who could run circles around many of her peers not to mention ultra-outgoing without a fear in the world. In one day that all changed. She cannot keep up with her peers and it breaks my heart and it frustrates her. She is still outgoing, but she is somewhat reserved and not very trusting of many adults. I always wonder what she would be like today if this had not happened, but as usual Dave reminds me that that is a lesson in futility because it did happen. From the moment she was conceived, this was destined to be a part of who she would become. I have finally stopped asking how and why this happened. I have accepted that some quirk in the chromosomes while she was in the womb led to this and just like any other chromosomal abnormality, there is nothing I could have done to change it.
But while I hate having had to live through my own child's cancer treatment, there are so many positives that have come out of it. First and foremost, Dave and I know how blessed we are to have the family and friends that we do. So many horrible things happened during the first 6 months of Catherine's treatment (not all of it cancer related), and there was a point where we just hit bottom. But as always, that is when we would get the right phone call or visit to lift our spirits. Others took very good care of us so that we could focus on Catherine. I am also so thankful to have met the people who have chosen to work with kids with cancer - all of Catherine's doctors and nurses up in
Guilford. You have no idea how special these people are because not only are they treating the patient, they are treating the whole family (and trust me when I say the patient is a lot easier). I will never forget when Catherine was diagnosed, there was a young girl in the room next to us. She was bald, looked to be a teenager, usually alone watching TV and having a soda. I felt so bad for her because all she heard were Catherine's screams during those first few days. When she was discharged, she and her family came to our room to bring us a balloon and a beautiful dove the Dad had made and to welcome us to Dr. Joe's family. I will never forget telling him that I didn't need another family. Anyway, we talked and as it turned out, this was Ashley's second go around for her leukemia - she relapsed a year after finishing treatment the first time. As soon as they left, all the nurses came running in to tell me that her case was different and to get thoughts of relapse out of my head. Needless to say, that short meeting has never left my head. But Ashley's Dad was right, it is like a family, primarily because these are the people who really understand what we are going through. We have met so many wonderful families over the last two years, people we would never have met otherwise. We will always have a bond long after this is done. I have also learned to truly be grateful for what I have because things change in an instant. If I wake up in my own bed and go to sleep that same night in it, and my whole family is under one roof, then the day has been a good one. You just never know what's waiting for you around the corner so you need to enjoy life as it comes.
On a much lighter note, I will say that I am looking forward to not having to rush food into my kids' mouths
every night so that the recommended 2 hour time lapse between Catherine's last bite and bedtime can occur (some researcher discovered that 6-MP seems to work best on an empty stomach during the sleep cycle). It will be nice not to have to look at my watch when Catherine tells me she is done eating. Tomorrow night's celebration will be going out for ice cream after dinner (oh yeah, no dairy allowed with 6-MP) and I think I'll take my watch off when we go. I cannot wait to see what Catherine is like off-treatment. Will the steroid weight come off? (she put on 12 lbs during treatment, all in her face and belly), will she have the energy of a normal 6 year old? I certainly hope so. It will take time for all the drugs to leave her body so I shouldn't expect some metamorphosis overnight, but over the next few months I think we'll see a change.
On Wednesday, the 23rd, Catherine will go in for her end of treatment bone marrow aspirate and lumbar puncture. Two weeks later, Dr. Joe will sit down with us to go over the results and let us know what to expect over the next year, what's normal and what warrants a phone call. He will tell us about when to schedule Catherine's
neuro-psychological testing, and I'm sure he will tell us when she will be tested to see which vaccines survived her treatment (likely very few and she will need to be re-vaccinated starting next year). Finally, for the first year off treatment, she will be tested every month to see how well her immune system is bouncing back and, of course, they will be checking for blasts (
ie leukemia cells). I am actually dreading the conversation because I understand so much now. Fun stuff I know.
So this is what Catherine has taken over the past 26 months (Dave was in Vegas for business so I figured this out one night):
15 lumbar punctures, one with Ara-C put into her spinal fluid and the rest with
methotrexate, the 16
th LP on Wednesday will be purely diagnostic;
31 doses of
Vincristine, the source of her ever-present "kicking pain" (a child's way of describing peripheral
neuropathy);
6 PEG-
Asparaginase shots, the most painful drug she got upon administration;
3 doses of
Doxorubicin, the drug that made her hair fall out;
1 dose of
Cytoxan, with a name like that, I guess one dose is enough;
8 doses of Ara-C, I expected so much worse in terms of side effects, but she handled this one the best;
9 doses of 6-
TG, similar to 6-MP, but slightly different to fool those cancer cells that needed that extra kick in the ass;
328 doses of
Decadron, the steroids, or as Catherine always called it, the yucky medicine;
78 doses of
Methotrexate, this one built up inside her made her look like a teenager with really bad acne;
609 doses of 6-MP, if I knew it would prevent a relapse, I'd give her this pill the rest of her life;
5 bone marrow aspirates;
4
immunoglobulin transfusions;
6 or more blood transfusions (always donate blood when you see a blood drive);
10 or more platelet transfusions; and
25 days spent at Yale-New Haven Children's Hospital with 1 ER visit where she was discharged after 6 hours (not too bad, a lot of kids spend so much more time than that in the hospital)
When I look at that (and frighteningly enough, many kids get so much more), I have got to believe that we have brought this disease to its knees.
Finally, I know I have spent the past 26 months thanking everyone who has helped us, but I've never really thanked the 3 people who matter most: Dave, for always bringing me back when my nerves were simply shot. I've always said that we balance each other well, and this ordeal has proven it. His strengths are my weaknesses and my strengths are his weaknesses. Alex, for always making me laugh. He was 16 months old when Catherine was diagnosed. This is all he knows. But he is such a compassionate child and I cannot help but think that this shaped that side in him. Last but certainly not least, Catherine. I don't know how to articulate that there were days where I drew my strength from her. I guess the best example was when she first lost her hair and we would go out to get my coffee. I was so nervous about what people would say and I was not looking forward to those stares of pity. But Catherine would strut in without a care in the world. I will never forget when she said "I am bald and beautiful". How right she was and that made the stares so much easier to endure. She has been through so much, but if a stranger met her on the street, they'd never know the life she has lived in six short years. She will not be considered cured until March 17, 2011, but she has proven to us that she is truly a survivor!
