So one, of the most common questions is what symptoms made us bring Charlotte in. How quick did we catch it, what tests did the doctors do before they knew it was leukemia? I pulled out and slightly edited a letter that I thought would answer those many questions.
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My 6-year old, Charlotte, has been limping since the beginning of July. I remember her twisting her leg as she was playing with the other neighborhood kids on the 4th. I expressed the desire to take her in to Sean, but we didn’t because she kept rebounding a little. She would also, according to Sean, switch legs that she said would hurt. Honestly, I can’t tell left from right, and get them mixed up frequently. All I knew was she didn’t seem to go outside and play as much, and she frequently complained that her legs hurt. I thought perhaps it might have been growing pains, something my mother told me Paul suffered through as a child.
While we were on vacation in southern Utah on July 19th, she refused to walk, saying her legs hurt. I refused to take her on the planned hike for the day, feeling that if her leg had a tiny break, and we forced her to hike, I would never forgive myself. I told Sean I wanted to go home (5 hour drive) and take her to her primary care physician. He convinced me to go the nearest IHC InstaCare instead. We drove 90 minutes to an InstaCare in Cedar City, where they took an x-ray of her right leg and said she was fine, and it might be a sprain. I mentioned at the time, she was also running weird low-grade fevers that would break and leave her drenched. The fevers weren’t consistent, and didn’t happen every day. Sean pointed out the 2-3 small bruises on her legs and asked if that had anything to do with her pain. (Honestly, she didn’t have bruising that looked out of the ordinary for a healthy kid). The doctor said no, and if she continued to limp/still refused to walk after a week, to bring her into an orthopedist.
I kept watching her, concerned that it was summer, and she had no desire to go outside and play. The last straw was Monday, July 30th she started to voluntarily go to bed at 7:30 in the evening, saying she was tired. The next day she had another weird fever in the afternoon and again climbed into bed before 8pm. I brought her into our primary care physician (PCP) on August 1st, and they took a strep sample and had the lab get a blood sample for a CBC. They told me I’d have results in about a day or two. I honestly thought they would tell me she had broken her leg and she had an infection because we were so late in finding it.
That night, our PCP called my house at just past midnight on Thursday morning (12:30am to be precise). I woke out of a dead sleep and by the time my brain was functioning to find and answer the phone, the call had gone to voicemail. I fumbled with the caller ID and saw it was from American Fork Hospital. All I could think was, “that’s probably not good”. Before I could decide to try calling the hospital and doing something that is my ultimate pet peeve (“Hi, I have a missed call from this number, and I’m not sure who was trying to call me), the same number called back. Our PCP told me to Charlotte’s blood tests were highly concerning, and she wanted us to drive up to Primary Children’s Medical Center in Salt Lake right away. She instructed me to pack a bag, and told me Charlotte would be admitted. She assured me that we shouldn’t worry about rushing, that whatever Charlotte had could wait to be seen once we packed a bag.
Looking back, I think this was probably her way of telling me not to drive like a panicked maniac up to the hospital. I, of course start blubbering the minute I get off the phone. I go get a suitcase, get dressed, and go outside to the tent where Sean and Charlotte are sleeping. They decided to go camping that night, because Naomi was a girl’s camp, and Sean thought he and Charlotte would have fun playing campers too. I wake up Sean and give him the bad news. He wakes Charlotte and she starts crying, because she wants to stay asleep. Then I go inside and pack 2 pairs of pajamas and 2 outfits for Charlotte – no socks, no shoes, no underwear, no toothbrush or toothpaste, and absolutely nothing for myself or Sean. I do remember to grab her a snuggly blanket and her pillow pet, a coloring book, a deck of cards, and crayons.
Day 1 - Once we checked into Primary Children’s ER about 1:30am on Thursday morning, the nursing staff placed an IV and drew another blood sample to double-check the results from the previous test. At about 5:00 am two doctors came in and told us it was leukemia. Actually, they first asked us what we thought might be wrong with Charlotte. I rattled off some of my guesses. “Well, you are right, it was the last one.” I had to apologize and say “what was the last one?” “It’s Leukemia.” They immediately told us we were going to be checked-in, and treatment would begin. That’s about when I called my boss, Gordon, to tell him I was not going to be coming into work. I also started texting family members to call us when they woke up. We were taken upstairs about 7am, and then the education began. I honestly don’t remember most of it. Thursday was primarily blood tests, EKG, heart tests, x-rays, etc. They were concerned because her hematocrit level was a 16, and it should be a 30-35 – she was anemic and immune-compromised. Her uric acid levels where high, which could damage her kidneys; and her phosphates were high. They gave her a blood transfusion, a lot of meds, and told us surgery to install her central line was postponed from Thursday afternoon to Friday morning.
Day 2 - Friday morning they transfused platelets and took Charlotte into surgery. She had a bone marrow sample taken, a lumbar puncture (LP), and a central line installed (we chose a “power port” that stays under her skin, and is accessed when needed). They inserted chemo into her spine at this time as well. The first round of IV chemo was later that evening. We stayed in the hospital until 7pm Monday evening. Charlotte had been given 2 more rounds of chemo during that time. They de-accessed her port (taking off the IV tubes leading to her port) and she has a small quarter-sized lump under the skin of her chest where her port will remain for the next 2-3 years. We will be taking her in weekly for the rest of this month for chemo treatments. At that time, they access the port, draw blood, and insert chemo through her central line. She is sent home (de-accessed) within an hour after the chemo has been administered. They hold her at the oncology clinic for a while after the administer chemo to confirm she doesn’t have an allergic reaction to the meds.
Day 2 evening - Charlotte’s diagnosis is pre b-cell Acute Lymphoblastic Leukemia (ALL). ALL is the most common and most successfully treated type of childhood leukemia. The attending Oncologist assures us they have been successfully treating it for over 30 years. The medicines/chemo they use are not new. They don’t use any trial drugs on the kids. The success rate is 90-95%, and she fully expects to be speaking with Charlotte many years from now and talking about “Remember when I had to come to the hospital the first time?”
Day 3 & 4 – The constant barrage of child life experts, social workers, nurses, oncologists, and nutritionists seem to disappear, it’s the weekend and we have a few moments to catch up and process everything.
Day 5 – Monday, August 6 – Education begins again all day. They decide to let us go home (I guess they felt confident that we were paying attention.) We are sent home with instructions to return Fridays for chemo treatments.
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