Tuesday, November 04, 2003

First. Post. Ever.

Wow, how do I even begin to sum up the events of the past month and the profound impact they have had on our family? I can't believe it's only been three weeks since Kendrie was diagnosed, and not much before that we were clipping along at a normal, enjoyable pace of life. Busy with school, soccer, Brownies, etc; the biggest challenge of my day was getting the kids to eat a vegetable or catch up on the never-ending cycle of laundry. Talk about a reality check!! :)

To put things in perspective, I'm going to go back in this first journal entry and try to update from the beginning. When all is said and done, this can be a personal journey memento for Kendrie to keep, peruse, or set fire to if she so chooses!

Those of you who know me, know I can --on occasion-- be somewhat of a chatty-cathy. (what an understatement!) So bear with me as I go "back to the beginning" and capture this experience from day one. If you intend to read the whole thing, then I suggest you grab a sandwich and a Coke first ... it might be a little on the lengthy side!

The history:

Aug 19, 2003 --- Kendrie seems tired, quiet, and falls asleep during our celebratory lunch with the G****** family from NYC. I (Kristie) was 24 hours away from giving birth as a surrogate mom to twin boys, and looking forward to spending time with the parents- and grandparents-to-be that day. I suspected Kendrie might be a little overwhelmed by all the new faces, so didn't think much else of it. She was not quite four years old and has always been a little shy around new people. For the next three days she complained of arm and leg pain and limped around the house, so after giving birth and then being released from the hospital, I took her to see a base pediatrician. He diagnosed a viral illness, told us to push fluids, tylenol for pain, etc. End of story. I attributed it to the flu, or maybe even growing pains. Who knows? What kid doesn't feel crappy every now and then?

Fast forward six weeks later, Oct 2, 2003

Thursday night, Kendrie spiked a fever at home that evening, but otherwise seemed fine. Off and on the next three days she complained of her arms and legs hurting and we couldn't seem to kick the fever, so Monday morning I made an appointment with her new primary-care manager, a PA (physician's assistant) in Family Practice who had never seen her before (interesting coincidence coming ahead) He didn't seem too concerned about the fever, but suggested a CBC (complete blood count) to rule out any antibacterial illness. Tells me if she's not better in a week or so to bring her back. Then, that afternoon, he called to tell us her blood levels look (and I quote) "interesting". Hmmmmmm. Could you *define* interesting, please??? Apparently her red blood count (RBC), which is normally around 12 in healthy children, was down to a 4.8. He wants us to see "someone" asap, and gives me a phone number to a specialist, with instructions to bring Kendrie back in to him on Wednesday for another blood test.

At this point, I'm thinking, "crap. Another blood test? Did you not hear her SCREAMING when the tech drew her blood the first time? And you want us to do it again??? When all she is, is a little anemic????" So I called the specialist's office, only to discover he is a PEDIATRIC ONCOLOGIST, for God's sake!! Why are they sending us to a hematologist/oncologist for a case of the flu, or some other such benign thing?? (in hindsight, I wonder if my subconscious began to suspect then that something was wrong, but my "bury my ostrich head in the sand" sense of denial refused to believe it???) The oncologist couldn't get us in for two weeks, so we went back to the base on Wednesday and the blood test revealed that rather than bouncing back, her RBC had dropped a little more, to 4.3.

The PA diagnosed her with something called TEC, a form of transitory anemia caused when the body, for some reason, quits producing new red blood cells, and which usually resolves itself on its own. Kendrie's RBC were low, but everything else looked fine. He got our appt with the specialist bumped up to the next Monday and told us just to watch her over the weekend. By now we noticed she seemed pale, fatigued, and was still running a fever, but we attributed it to her low RBC. I had kept her home from school all week and I honestly thought by Monday, she would be fine. After all, most viral illnesses run their course in about ten days, right?

Coincidentally (told you it was coming) the new PA to whom Kendrie had been assigned was also Blaine's PCM and had sat in on Blaine's medical review board after *his* bout with cancer earlier in the year. They had to determine his active duty status and in the course of the review, he and Blaine had developed a good relationship. So e-mails had flown for a day or two about TEC and what it entailed. So even though I didn't recognize it until later, already the blessings had started, in that we had a medical services provider who was already familiar with our family situation, Blaine's tumor, and cared enough to try and alleviate our fears and ignorance about what might be wrong with Kendrie. I guess the poor guy figured we had already been through enough this year............little did he know!

Friday night, Oct 10 -- I had taken Brayden to a Brownie meeting and Blaine called to tell me something was "wrong" with Kendrie. She had become unsteady on her feet, dizzy, and had even fallen down at one point. We decided to take her in to the local ER and make sure she was fine, which of course I knew she would be, but better safe than sorry, right? We dropped Brayden and Kellen off at a friends' house, with assurances we would be back in a few hours.

Blood tests (yes, again!! I was thinking!! Could they not quit sticking my child with a needle??? Didn't they see how hysterical she was??? This time they papoose-wrapped her, which might have been better for the tech, but was difficult for me to see, revealed her RBC had dropped even lower, to a critical level of 3.5. In addition, her hemoglobin was also critically low. There was really no choice, she had to be transferred to Children's Hospital in Macon for a blood transfusion. We were still thinking the diagnosis was TEC at this point and were hopeful that if the transfusion could "kick start" her body into producing blood again, things would quickly revert back to normal.

So, we spent Friday night, Saturday and Sunday in the Pediatric Intensive Care Unit of Children’s, and Kendrie received several transfusions of packed red blood cells. Each time her levels would rise, but then fall off again quickly. The kids were out of school for the weekend, and for Columbus Day on Monday, so Blaine and I were swapping off nights at the hospital. We had plans to meet our friends the Deatons in Nashville that weekend, which we had reluctantly cancelled. Thank goodness we did, but I was still disappointed. I can't believe I was so ignorant that despite all that was going on, I had no clue, and thought messed-up vacation plans were going to be our biggest let-down that weekend. Geez, what an idiot.

The oncologist that we were supposed to have seen on Monday had been called in on her case and told us he wanted to do a bone marrow aspiration (BMA) on Monday to try and determine why her body wasn't making any new blood. (quick biology lesson: all new blood in the body is produced in the bone marrow, then distributed throughout the body) They wanted to suck a portion of the marrow out through her hip with a long needle to analyze it and find out what was wrong. The test was done under IV sedation which meant Kendrie felt pain (there is no real way to anesthetize that far into the hip bone), but was given enough "good" drugs that she didn't remember it later. It was probably the first time I was glad for the IV, since it meant the test was easier on her, but had been cursing all those blood draws up until that point!

The test took much longer than we anticipated and afterwards the oncologist told us he had so much trouble getting any marrow out, (after sticking her and trying and failing in three different locations on both her front and back hip areas!) that he was worried the test would be inconclusive, so he wound up doing a bone biopsy, which means they shaved off a tiny portion of hip bone to evaluate. Again, I am totally clueless and have no concept that bone marrow being packed that tightly is even a problem. Once I determine Kendrie is resting comfortably back in her room, I head home to shower and leave Blaine at the hospital for his "shift".

A few hours later I am about to head back up to the hospital to swap off with Blaine again, and he tells me that the doctor is waiting for me to return to talk to us. I think I knew then what it was, but was still trying desperately not to believe it could be true. When I arrived, the nurse said, "ok, now that you're here, Dr. D. wants to be paged." Then when the doctor got there, he asked us to step out of the room, then into a vacant patient room and sit down.

Blaine had stayed in Kendrie's room with her and Brayden and Kellen, so I was there by myself and I knew what he was going to say before he said it. You know how you have those moments, some profound, some silly, some touching, that are forever etched in your memory? That's what that moment will always be for me. The doctor positioned himself between me and an outside window, so as I was looking at his face he was sort of a silhouette and I couldn't see him without squinting. I remember thinking, "the walls in this room are so blue I feel like I'm in a swimming pool and I can't see his face and if he's going to give me bad news it's really rude to make me squint and his hand is too heavy and I wish he would take it off my shoulder and why did they pick this awful blue paint color and that sun is hurting my eyes and maybe if I keep talking to myself I won't have to listen to the terrible words that are coming out of his mouth" and then he paused and said, "I'm so sorry, it's cancer." and my heart just exploded into a million tiny pieces.

Blaine came into the room a few moments later and I'm sure he knew immediately, since I was still crying. Then I became very compartmentalized and put the part of me that was freaking out into a small box to take back out again later, and immediately began drilling the doctor on what do we do next? He kept apologizing and I just wanted to say, "get on with it! What the hell do we do to fix it?? And where is the damn rewind button so I can go back about ten minutes and erase everything you just said and make it all go away?"

He explained that as the only hem/onc physician in Macon, his patient load just wouldn't allow him to take Kendrie on as a patient and he recommended we take her to Atlanta for care. He said that honestly, they could care for her better than he could. Even at that exact moment, with my mind going in a million frenzied directions, I remember being surprised that any doctor would admit that, and being impressed with his honesty.

So, the next morning, off to Atlanta we went. Kendrie and I were transported up via ambulance, and Blaine stayed behind with Brayden and Kellen to await the arrival of Grandma McClung, who, thank heavens, was able to drop everything and come to stay.

The next week, spent in the AFLAC Children's Cancer Center at Children's Healthcare of Atlanta, Scottish Rite, was a blur. Every time I walked in and out of the ward, and passed by the sign that said "Cancer Center" I felt like an intruder, an imposter. Obviously *MY* family had no business being there. As trite as it sounds, that's the sort of thing that happens to other families. A small part of me expected the nurses, or Kendrie's new oncologist, to walk in any minute and say, "oops! We got her chart mixed up with someone else's, and she isn't sick at all! Ya'll just go on home now, ok?! Nice meeting you, bye-bye!" I'm still so sad that didn't happen.

After repeat blood tests confirmed the diagnosis of ALL, the treatment plan was begun immediately. Kendrie underwent surgery to have a port-cath inserted, which consists of an internal catheter that threads from under the skin in her chest to a large vein near the collarbone, then inside the vein to the right atrium of her heart. This will stay in place throughout the entire treatment (2 years, 2 months) (barring any complications) and she can have blood drawn, or chemo drugs administered through it. Hopefully this should eliminate a good portion of the "sticks" in the arm and hand, although she still has to have a needle go through the chest to access the port.

Repeat blood tests in Atlanta revealed her blood levels were dropping again, so she received another transfusion (two? the whole visit is a blur) while there. They began chemo the day after her surgery, which in the hospital, consisted of an iv drug, shots, and oral meds, with constant monitoring. I have collected and measured and charted and dumped more urine than I ever care to for the rest of my life.

Right away we realized that perhaps only second to her hysterical fear of needles, shots, and band-aids, was going to be the challenge of getting these liquid oral drugs down her three times a day. Kicking, fighting, screaming --- this is the child who I can make cry with just a sharp word and who rarely crosses either Blaine or myself about anything. I couldn't understand why she was so defiant about the meds, until someone explained how awful they taste. I guess not all the medicine on the planet is orange or grape flavored, like children's Tylenol. Thus began our journey while in the hospital to flavor the meds ourselves with whatever we could find on hand -- mainly Gatorade, which doesn't work for squat, just in case you were wondering.

That week in the hospital will be etched in my memory as one spent carrying a 35-lb girl to the bathroom eight times a night, dragging the iv pole behind me, while she was being pumped full of IV fluids and couldn't walk herself to the bathroom. Listening to a social worker talk about support groups, supplemental insurance, Ronald McDonald house reservations, etc, and frantically reading the book she gave me that outlined patient care --- even using the light from the IV monitor at night so I wouldn't wake Kendrie once she was sleeping. Trying to memorize the entire book and understand enough to ask intelligent questions of the doctors and nurses. Of a daughter whose bubbly, fun personality seemed to just disappear before my very eyes; who became withdrawn and frightened, with pale skin and bruises and dark circles under her eyes, and the helplessness of knowing I can do nothing to make it all go away. One where I came as close to physically harming another human being as I ever have, when the lab tech not only missed her vein twice, blew it out, finally found another vein, and after drawing the blood, all the while I am having to hold down my own crying, hysterical child, has the absolute balls to come back in the room ten minutes later, after I finally got Kendrie calmed down, and tell me she forgot a vial and we would have to do it again. If I ever see that woman in a dark alley.............

There were some amazingly bright spots in the week also, however, and it would be remiss of me not to burn those into my memory as well. Of requesting that Kendrie be unhooked from her IV long enough for she and I to walk around the hospital campus on a beautiful fall afternoon, and enjoy the koi fish pond during a few moments of solitude. Of playing games and puzzles and coloring and reading with her, and the flashes of pure happiness when she would act like her normal, old self and grin or smile at something I said or did. Of the kindness of friends, and even some complete strangers, who took the time to call, e-mail, write, visit, and send care packages. I will never in a million years be able to express my gratitude to everyone for the support you have all given us, and I get a little sappy and weepy every time I even try, so I won't go down that road just yet...............

Anyway, after a week, on Oct 21, we were allowed to bring Kendrie home. You would think we would have been eager to escape the constant beeping of monitors, intrusion of medical staff, lack of our own space and things; but to be honest, I was frightened to leave. I felt safe and cared for at the hospital and cried when they told us to take her home. What the heck did we know about caring for a child with cancer? Much like taking home a newborn from the hospital, only without all the giggling and joy and excitement --- only the gut-wrenching fear that you will do something wrong, like give the wrong medication at the wrong amount on the wrong day or the wrong time, or forget the meds completely. What if she gets a fever and we don't catch it in time? Infection is the number #1 enemy for kids with suppressed immune systems, and Kendrie's was about as low as they can go at that time. The ANC number (absolute neutrophil count) needs to be above 1000 to fight infection, and on the day of discharge, Kendrie's was 45.

But, we came home and things were indeed better once we were sleeping in our own beds and spending time together as a family. Mom did a fabulous job running things in our absence, and friends locally made sure we didn't do without a meal for two weeks after arriving home -- what a treat! (actually, it's very easy to get spoiled that way!) Brayden and Kellen were glad to have all of us home, as well.

Oct 23, our first day of outpatient therapy at the cancer center. Kendrie had a morning appointment for her blood work and IV chemo drugs, and despite using the "magic" emla (numbing) cream around her port site, she screamed and screamed when they stuck her with the needle. I know anxiety can make things worse! Then we went to Day Surgery for her BMA, and a lumbar puncture (LP), also known as a spinal tap. Although the LP she had done in the hospital showed there were no leukemia cells in her cerebro-spinal fluid (Thank God!) those areas still have to be treated, since "normal" chemo drugs can't cross the blood-brain barrier. So treatment drugs for the spinal cord and brain are given through a spinal tap to make sure no cells wander up that way. Although it is a hassle to have to report to Day Surgery for these procedures (and I give every kid there the evil eye if they even wander in Kendrie's direction while she is so susceptible to infection!) it is well worth it since they put kids Kendrie's age under general anesthesia for these procedures. Much, much better for everyone involved. A long day, though. We left the house at 6 am and didn't get back until 6 pm, having hit Atlanta rush-hour traffic both in the morning and late afternoon. Ugh.

Oct 25 -- Egads, we have to add yet another horrible tasting liquid medicine to the plethora of crap we are giving her. Nothing is helping! We have tried flavoring the meds with chocolate syrup, strawberry syrup, pancake syrup, cranberry juice, grape juice, and have even bought blue-coconut slush syrup from Sonic -- nothing helps!!

Oct 27 -- Dr. B, Kendrie's oncologist, calls to let us know the results of her BMA from the previous week look good --- blasts (the bad cells) are down to between 5-23% the total cells in her marrow. This indicates she is responding well to the treatment. Prayers of thanks! If she had failed this first 28-day phase, called "induction", it would have meant a much more intensive treatment. So far, so good.

Oct 28 --we figured out Kendrie can take pills quite easily if we crush them up and mix them with a spoonful of applesauce. She actually seems proud of herself for figuring it out and doesn't fuss anymore. Now we have requested ALL of her weekday drugs be in pill form!

Oct 29 -- Kendrie's second visit to the Atlanta clinic - this trip does not go well at all. The child's not stupid, she remembers what happened last time, and after yet another huge scene, kicking and screaming, for port access for blood work and iv chemo, we go over to Day Surgery, only to have the anesthesiologist refuse to put her under for her procedures because her blood pressure is so high (155/110). So we have to go back to the clinic and have the BMA done under IV sedation again, which is incredibly hard for me to witness. I am holding her hand, stroking her forehead, and crying myself every time she cries out in pain. The nurses reassure me she won't remember anything, but that certainly doesn't help me at the time, and I am a wreck. Then, the nurse and child life specialist have the audacity to be NICE to me, and bring me water and kleenx, which of course makes it even worse and I cry harder at my failure as a parent to protect my child from these awful things that are happening to her and which she just doesn't understand, bless her little heart.

So, that pretty much brings us up to current. We got a phone call from Dr. B today, telling us that the BMA from last Thursday shows her blast count is ZERO!!!!! That is fabulous news, and means she is in remission! Of course, 98% all children achieve remission during this initial induction phase, but it still thrilled me to hear it.

So far, her only complaint is stomach pain, and she's a little wobbly on her feet. (looks a bit like her Grandpa Calvin!) :) The steroids aren't affecting her in the "typical" way they affect most children. She is not gaining much weight, and not eating us out of house and home, although she is grazing a lot and I'm starting to feel like a short-order cook, preparing something different every thirty minutes. And she has a real affinity for mac & cheese and gets up at 3am most nights for a bowl! She isn't experiencing the usual rages like kids on steroids can. Her moods are exactly the opposite, very withdrawn, quiet, and will spend hours just lying on her bed by herself, staring at the wall. I'm not sure how much is medicine and how much is simply 4-yr old trying to process all that is happening.

We have two weeks of induction left and then we begin the second 28-day phase called consolidation. Then, she will begin one arm of the clinical trial known as CCG 1991. We just have a few more questions for her doctors before agreeing to the trial. Total treatment time is two years, two months, but could be longer if she is hospitalized for fevers, infections, etc, and they have to postpone any of the chemo. So our joke around the house this week is "two weeks of therapy down, one hundred ten to go!" Not really funny, I know, but you gotta find humor where you can, right?

OMG, a novel, I'm telling you, a NOVEL! Thanks for putting up with my rambling this long, and I won't hold it against you if you had to cut your losses and just skip to the end!

No comments: