Monday, July 10, 2017
Happy Anniversary? So, yesterday, July 9th, was the two year anniversary of Claire's relapse. That's such an odd word to use for that date, though. Like it's something to celebrate or commemorate. I don't even know if Claire remembers the date, but I certainly remember things around it. Like a hike we took close to that date when Claire got so tired after a just a short distance that we turned around and went back to the car. Or me spending a week at a church camp but sneaking up the road in my car every day to call Claire at home and see how she was feeling, because she had been having low grade fevers for a week or so. Or the extended family 4th of July party where Claire decided to go home early because she "wasn't feeling great." And I'm surprised by how many things we did this year that brought those memories up for me, memories that I don't voice out loud because I don't want to influence my children's feelings by bringing up my anxieties. And so it goes. On the 3rd, Claire had her regular appointment with her oncologist at Primary Children's. She only goes every three months or so now. (But she sees plenty of other doctors in the meantime; orthopedists, endocrinologists, general practitioners for those pesky childhood vaccinations.) And going to Primary is kind of like a fun reunion. But a reunion where you are always holding your breath just a little. The first stressful news was that Claire had lost weight. Almost 5 pounds, in fact. I suspect it's because she hasn't been in school where she is tasting things all day, but the whole weight thing has a lot of emotion behind it for Claire because gaining, or even maintaining weight has been a struggle for her since relapse. So she has started taking some meds that help with her nightly nausea (probably from her targeted therapy drug that she will take through this year) but make her more tired during the day. It's a trade off, I guess. And now my freezer is stocked with full fat ice cream, which doesn't help me with my weight struggles. Perspective, right? The second stressful thing was that her blood counts, especially her platelets, had dropped. Dropping platelets is a big red flag for a leukemia mom, but you have to hold it together and nod and ask how concerned you should be about it, because you don't want to go to the crazy place. It doesn't help that this info is being given by the nurse practitioner, who is usually more cautious (and, sorry, in this case occasionally less informed) than the actual doctor. Then our wonderful Dr. A came in and pointed out that there had been a pattern of dropping platelets two other times within the past year (doctors like patterns the way that lawyers like precedent) and that she suspected it was the targeted therapy (imatinib), but that we didn't have to guess because we had science that would prove it one way or the other. Of course, that particular test that measures BCR-ABL takes about a week to come back. So, I had ALL week to try and not stress about it or ask Claire how she was feeling or casually touch her forehead to check for fevers because all of the emotions from two years ago were right there. And that's how it is for a cancer parent. Once you're in that world, you're always in that world. And you try to keep everything cool and casual and down, but there is a part of you that is always throwing a side eye over your shoulder. Are you starting to skim through the post to see what the outcome was? Because that's what I would be doing. Dr. A called Claire this morning and told her she was really happy that both BCR-ABL tests were negative (0.00000 if you want to get specific). So, yeah, happy anniversary. Sigh. And now we go back to the business of being normal until her next blood draw/appointment. And we pray for other families and children whose needs are more immediate, and those who have gone through the unimaginable but you know that their emotions are easily triggered like yours are. And maybe you just go ahead and eat some of that ice cream in the freezer.
Waiting for the Independence Day fireworks show.
The whole fam-damily.
Just hanging around the firepit.
Enjoying historical sights in Missouri.
Indian burial mounds close to Nauvoo, Illinios.
Enormous brunch in Chicago.
What time is it? Showtime!
Navy Pier, Chicago.
I love the buildings in Chi-town.
With our sweet friend Tiffany. Till we meet again.
Wednesday, November 30, 2016
Day 365
Today, my 20-year-old daughter's bone marrow is celebrating its first birthday. HAPPY BONE MARROW BIRTHDAY, CLAIRE!!!! Last year I was sitting in a hospital room, anxiously waiting as gravity delivered the life saving marrow into my completely depleted daughter, while my donor daughter was recovering and my youngest daughter was trying to not get lost in the occasion. (My three other children and their spouses were also involved.) This year, I am sitting at home by our Christmas tree, baking a cake for tonight's celebration (yellow cake with chocolate frosting and sprinkles, if you are curious) while Claire is finishing up her culinary school class in another town. She will come home later tonight and give her sister, who literally saved her life, a gift. Not the car that one of her doctors jokingly suggested would be an appropriate gift for a bone marrow donor, but something nice and fun nonetheless. We will then all go out to dinner and see a musical together. That is miles away from what we did last year. Miles.
I haven't posted since Claire left for college in August. I'm not going to lie; that was a very hard transition for both of us. But every time Claire has come home I've seen her have a little more strength, a little more stamina, a little more confidence. This past weekend I marveled as she carried a heavy load of clean laundry down the stairs in the snow to her car. When we asked if she needed help she replied, "No, I've got it." Last week, at her monthly clinic visit, she was showing the nurse practitioner a couple of burns and a cut that she got in her cooking class. Her doctor said, "She got those at school? Wow." He almost seemed impressed. Her blood work continues to be stable, showing no evidence of BCR-ABL (the specific chromosomal anomaly for her type of cancer). I asked what this one year milestone really means. He said that most relapses occur during the first year, it is rare that they happen after the second year, and after five years she is considered cured. He also said that she was doing really well. I mean, I know that, but I think this is the first time that one of her doctors have said it out loud. In a few weeks Claire will have her one year work up. It will be a full day of tests, starting with blood work, then a bone marrow aspirate, an echo cardiogram, and pulminary function test. She also needs to see an ophthalmologist to check for damage to her eyes, as well as having info from her dentist and gynecologist sent to her doctors. Then we will meet after Christmas to get all of the results. I'm not really worried about it, though. If there's anything this journey has taught us (besides gratitude), it's to live in the present and not worry about tomorrow. Each day is a gift. And today, we celebrate.
Umm, yes.
Claire with the group of children being honored at this year's CureSearch walk.
Claire with Rachel, a bone marrow transplant survivor and one of our awesome nurses at Primary Children's Hospital.
Four beautiful survivors.
Looking good.
We never pass up a photo-op.
A little breakfast date before her clinic appointment.
With her cousin's little girl. I just thought this shot was adorable.
Thanksgiving Day pie breakfast.
So much to be thankful for this year!
We recently made breakfast in the Ronald McDonald Family Room at the hospital.
Claire used her culinary school techniques!
All smiles.
So very grateful.
Today, my 20-year-old daughter's bone marrow is celebrating its first birthday. HAPPY BONE MARROW BIRTHDAY, CLAIRE!!!! Last year I was sitting in a hospital room, anxiously waiting as gravity delivered the life saving marrow into my completely depleted daughter, while my donor daughter was recovering and my youngest daughter was trying to not get lost in the occasion. (My three other children and their spouses were also involved.) This year, I am sitting at home by our Christmas tree, baking a cake for tonight's celebration (yellow cake with chocolate frosting and sprinkles, if you are curious) while Claire is finishing up her culinary school class in another town. She will come home later tonight and give her sister, who literally saved her life, a gift. Not the car that one of her doctors jokingly suggested would be an appropriate gift for a bone marrow donor, but something nice and fun nonetheless. We will then all go out to dinner and see a musical together. That is miles away from what we did last year. Miles.
I haven't posted since Claire left for college in August. I'm not going to lie; that was a very hard transition for both of us. But every time Claire has come home I've seen her have a little more strength, a little more stamina, a little more confidence. This past weekend I marveled as she carried a heavy load of clean laundry down the stairs in the snow to her car. When we asked if she needed help she replied, "No, I've got it." Last week, at her monthly clinic visit, she was showing the nurse practitioner a couple of burns and a cut that she got in her cooking class. Her doctor said, "She got those at school? Wow." He almost seemed impressed. Her blood work continues to be stable, showing no evidence of BCR-ABL (the specific chromosomal anomaly for her type of cancer). I asked what this one year milestone really means. He said that most relapses occur during the first year, it is rare that they happen after the second year, and after five years she is considered cured. He also said that she was doing really well. I mean, I know that, but I think this is the first time that one of her doctors have said it out loud. In a few weeks Claire will have her one year work up. It will be a full day of tests, starting with blood work, then a bone marrow aspirate, an echo cardiogram, and pulminary function test. She also needs to see an ophthalmologist to check for damage to her eyes, as well as having info from her dentist and gynecologist sent to her doctors. Then we will meet after Christmas to get all of the results. I'm not really worried about it, though. If there's anything this journey has taught us (besides gratitude), it's to live in the present and not worry about tomorrow. Each day is a gift. And today, we celebrate.
We never pass up a photo-op.
Sunday, August 28, 2016
Day 272 (The Adventures of Claire)
And...she's off.
Last weekend we packed Claire up and drove her down to her university, which is only 45 minutes away. After several hours decorating her room, buying groceries, and getting textbooks we drove home. WITHOUT CLAIRE. I can't really describe my feelings. In fact, I am still processing them. I have waited a week to write, and I still don't know what to say. I will say that I am so very, very grateful. I know too many families who would have loved to have this moment in time for their children. A young man who is in our cancer community that was diagnosed while serving an LDS mission in Russia and who was about the same age as Claire passed away just two days ago. The realities of cancer are all around us, but so is hope and faith and the incredible feeling of moving on. Claire came home this weekend to hear her friend speak in church before leaving to be a missionary in Ukraine. We heard all about her first week at college, not that I hadn't texted her everyday. I think she overestimated how much energy it would take for her to have a normal university schedule and she was very tired by the end of her week, but she said she has enjoyed it. She really likes living on her own. I noticed a difference in her...a confidence or sense of independence that wasn't there before. It made my heart full. So, in the spirit of independence, I have decided to stop keeping this blog. Oh, I will probably write something on her bone marrow birthday or post an occasional picture, but I think I will just let her live her new life without letting everyone in on it. (Even though the support we have received through this blog has been so beautiful and appreciated.) And I will keep breathing.
"...this storm isn't something that blew in from far away, something that has nothing to do with you. This storm is you. Something inside of you. So all you can do is give in to it, step right inside the storm, closing your eyes and plugging up your ears so the sand doesn't get in, and walk through it, step by step. There's no sun there, no moon, no direction, no sense of time. Just fine white sand swirling up into the sky like pulverized bones. That's the kind of sandstorm you need to imagine.
And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about."
Haruki Murakami
Beautiful new blond hairdo.
Its time to start getting all of her childhood immunizations again. So, Claire, how do you feel about that?
"In my own little corner in my own little chair..."
Moving into her new digs.
Three college bound cousins.
And...she's off.
Last weekend we packed Claire up and drove her down to her university, which is only 45 minutes away. After several hours decorating her room, buying groceries, and getting textbooks we drove home. WITHOUT CLAIRE. I can't really describe my feelings. In fact, I am still processing them. I have waited a week to write, and I still don't know what to say. I will say that I am so very, very grateful. I know too many families who would have loved to have this moment in time for their children. A young man who is in our cancer community that was diagnosed while serving an LDS mission in Russia and who was about the same age as Claire passed away just two days ago. The realities of cancer are all around us, but so is hope and faith and the incredible feeling of moving on. Claire came home this weekend to hear her friend speak in church before leaving to be a missionary in Ukraine. We heard all about her first week at college, not that I hadn't texted her everyday. I think she overestimated how much energy it would take for her to have a normal university schedule and she was very tired by the end of her week, but she said she has enjoyed it. She really likes living on her own. I noticed a difference in her...a confidence or sense of independence that wasn't there before. It made my heart full. So, in the spirit of independence, I have decided to stop keeping this blog. Oh, I will probably write something on her bone marrow birthday or post an occasional picture, but I think I will just let her live her new life without letting everyone in on it. (Even though the support we have received through this blog has been so beautiful and appreciated.) And I will keep breathing.
"...this storm isn't something that blew in from far away, something that has nothing to do with you. This storm is you. Something inside of you. So all you can do is give in to it, step right inside the storm, closing your eyes and plugging up your ears so the sand doesn't get in, and walk through it, step by step. There's no sun there, no moon, no direction, no sense of time. Just fine white sand swirling up into the sky like pulverized bones. That's the kind of sandstorm you need to imagine.
And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about."
Haruki Murakami
"In my own little corner in my own little chair..."
Sunday, August 7, 2016
Last week was a turning point. For the first time in over a year, I went in my car to do my things, and Claire went another way in her car (by herself) to do her things. It felt right and wrong at the same time. Legally Claire can drive, but there have been so many issues with her feet and ankles that it hasn't really been safe. She has made so much progress, though, that we decided it has become a safe option. I'm still not exactly sure how the whole foot measurement thing goes, but for those of you who are in the know about physical therapy, she has gone from about -27 to -3 when stretching her feet back, and her heels can touch the ground when she is standing. So she bought herself a new car. Wow. We also went on our first family vacation in two years. As I looked at my six (+ three + grandchild) children, I was overwhelmed with gratitude. It was a joy just to see them all together.
I've also looked back at pictures from this time last year. I started this blog after the first six weeks following Claire's relapse, so I haven't talked too much about that time. There were a lot of decisions about treatment being made those first few days in the hospital. Claire had previously (in 2011) had a toxic reaction to one of her drugs, Methotrexate, that was injected into her spinal fluid. Historically the brain was a sanctuary for leukemia cells and relapse often occurred there, so it became a vital part of treatment to treat the spinal fluid with chemo so it could reach the brain. Despite her toxic reaction (and the fact that every one of her medical papers have a big red tag on them stating that she can't have IT Methotrexate) it was decided that her body would be re challenged, and four consecutive doses would be injected into her spinal fluid over four weeks. On August 1, 2015, after her fourth dose of IT Methotrexate, Claire started to feel really sick. Then her blood pressure and heart rate began to drop dangerously low. Within a matter of minutes our room was filled with doctors from the PICU (pediatric intensive care unit). Claire was septic, and she was quickly moved downstairs. Blood cultures showed that she had a bacterial infection, which was critically dangerous with no immunity to fight it. Her central line (a port) was removed and three other lines were placed. She was on heavy antibiotics. For several hours our room was filled with medical personnel just standing there staring at her monitors. After a few days Claire developed delirium, which is not uncommon in the PICU because your body loses all sense of its natural rhythms, and since Claire was so immunocompromised, we were in an isolated room with no windows. (We were so grateful to our nurse who fought hard to eventually get us moved to a corner room with lots of natural light.) Claire started speaking nonsensically, thought that her room was haunted, and saw things that weren't there. One night, as David was sleeping in a parent room down the hall and the nurse had turned her back for a moment to prepare meds, I witnessed Claire having a seizure. Her head, eyes, facial features, and arms all pulled to the right, and I screamed, "She's seizing! Help!" The room was immediately filled with people who went right to work, and someone went down the hall and woke up David. Claire was wheeled down to imaging for several tests. After the seizure she became non responsive. Every day we had several teams from many different disciplines visiting daily, everyone waiting for her to wake up. During this time it was the nurses who helped me keep my sanity (somewhat) and one particular doctor who would come in and sit for a while, chatting with us about things that had nothing to do with what was happening. Ministering. And there were definite moments of "peace...which passeth all understanding." My friend whose son just passed away writes so beautifully about this peace on her blog, www.brendans-story.blogspot.com. When Claire finally did wake up and recovered enough to be moved back to the immunocompromised unit, she yelled out, "No! You said we were leaving! I want to go home!" In all of this journey, nothing has been more heartbreaking than when her mental capacities were compromised. That was almost unbearable, and I give huge props to the mental health professionals at Primary for helping her fight her way back. Even after she went back to ICS, she would often have a memory and she would ask me if it was real or not. Most of the time it wasn't. But the road to mental recovery was faster than her physical recovery, thank goodness. We have all decided that those six weeks after relapse were even harder than transplant.
Now here we are, a year after those events. Claire is moving out in two weeks to start culinary school at her university. (I'm still taking deep breaths over that one.) My two younger daughters will go back to school and I will start rehearsals for my first show in over a year at that same time. The other day someone asked me how it felt to have my life almost back to normal. I was really taken aback by the question, which was well-meant. But in my mind I thought, "Normal? What is normal?" My life, Claire's life, our family's life, can never be normal again. But we can have joy and light and love.
"Take the very hardest thing in your life, the place of difficulty, outward or inward, and expect God to triumph gloriously in that very spot. Just there he can bring your soul into blossom."
-British artist, Lilias Trotter
Claire's darling haircut. And I have sat in this amazing stylist's chair through so many of our toughest (and best) moments. We love her!
Cute pixie side view!
Claire and her new sweet ride.
At physical therapy. Our therapists were so concerned when she stopped coming for the ten days that she was recently inpatient that they checked out the blog to see what was going on. She has made a lot of progress there.
It touches!
Enjoying a little Pioneer Day (a Utah state holiday) picnic.
We were so excited to have the chance to see our dear friend and maestro of the Utah Symphony conducting a Rogers and Hammerstein singalong at the Deer Valley Music Festival. And yes. we sang along!
Just because he is so handsome...
Claire might have gone a little overboard buying treats for our road trip. On a happy note, her doctors were thrilled that she had gained almost ten pounds in less than three weeks!
My cute kids, minus one daughter in law, with a weird photo of our orthodontist thrown in. Don't ask.
Enjoying the beauty of Muir Woods.
Is anything better than seafood by the sea?
Lombard Street. The drive up was terrifying.
Claire is behind me, but you can still see her long legs.
Farmer's market picnic. The produce in California is ridiculously good. And my daughter Hannah's hair is ridiculously long.
At the park with the grandchild, trying out the equipment.
Planking.
Free food everywhere!
After years of watching cupcake wars, we finally got to try Sprinkles cupcakes. Sooo worth every calorie.
Just spinning with Aunt Claire.
At a recent cancer kid photo shoot, Claire had the honor of holding these pictures of our two beautiful, brave friends who have recently passed away, but who will never be forgotten. August 2016.
August 7, 2015. What a year it has been.
I've also looked back at pictures from this time last year. I started this blog after the first six weeks following Claire's relapse, so I haven't talked too much about that time. There were a lot of decisions about treatment being made those first few days in the hospital. Claire had previously (in 2011) had a toxic reaction to one of her drugs, Methotrexate, that was injected into her spinal fluid. Historically the brain was a sanctuary for leukemia cells and relapse often occurred there, so it became a vital part of treatment to treat the spinal fluid with chemo so it could reach the brain. Despite her toxic reaction (and the fact that every one of her medical papers have a big red tag on them stating that she can't have IT Methotrexate) it was decided that her body would be re challenged, and four consecutive doses would be injected into her spinal fluid over four weeks. On August 1, 2015, after her fourth dose of IT Methotrexate, Claire started to feel really sick. Then her blood pressure and heart rate began to drop dangerously low. Within a matter of minutes our room was filled with doctors from the PICU (pediatric intensive care unit). Claire was septic, and she was quickly moved downstairs. Blood cultures showed that she had a bacterial infection, which was critically dangerous with no immunity to fight it. Her central line (a port) was removed and three other lines were placed. She was on heavy antibiotics. For several hours our room was filled with medical personnel just standing there staring at her monitors. After a few days Claire developed delirium, which is not uncommon in the PICU because your body loses all sense of its natural rhythms, and since Claire was so immunocompromised, we were in an isolated room with no windows. (We were so grateful to our nurse who fought hard to eventually get us moved to a corner room with lots of natural light.) Claire started speaking nonsensically, thought that her room was haunted, and saw things that weren't there. One night, as David was sleeping in a parent room down the hall and the nurse had turned her back for a moment to prepare meds, I witnessed Claire having a seizure. Her head, eyes, facial features, and arms all pulled to the right, and I screamed, "She's seizing! Help!" The room was immediately filled with people who went right to work, and someone went down the hall and woke up David. Claire was wheeled down to imaging for several tests. After the seizure she became non responsive. Every day we had several teams from many different disciplines visiting daily, everyone waiting for her to wake up. During this time it was the nurses who helped me keep my sanity (somewhat) and one particular doctor who would come in and sit for a while, chatting with us about things that had nothing to do with what was happening. Ministering. And there were definite moments of "peace...which passeth all understanding." My friend whose son just passed away writes so beautifully about this peace on her blog, www.brendans-story.blogspot.com. When Claire finally did wake up and recovered enough to be moved back to the immunocompromised unit, she yelled out, "No! You said we were leaving! I want to go home!" In all of this journey, nothing has been more heartbreaking than when her mental capacities were compromised. That was almost unbearable, and I give huge props to the mental health professionals at Primary for helping her fight her way back. Even after she went back to ICS, she would often have a memory and she would ask me if it was real or not. Most of the time it wasn't. But the road to mental recovery was faster than her physical recovery, thank goodness. We have all decided that those six weeks after relapse were even harder than transplant.
Now here we are, a year after those events. Claire is moving out in two weeks to start culinary school at her university. (I'm still taking deep breaths over that one.) My two younger daughters will go back to school and I will start rehearsals for my first show in over a year at that same time. The other day someone asked me how it felt to have my life almost back to normal. I was really taken aback by the question, which was well-meant. But in my mind I thought, "Normal? What is normal?" My life, Claire's life, our family's life, can never be normal again. But we can have joy and light and love.
"Take the very hardest thing in your life, the place of difficulty, outward or inward, and expect God to triumph gloriously in that very spot. Just there he can bring your soul into blossom."
-British artist, Lilias Trotter
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