First, I want to take this opportunity to thank everyone whom has helped us in any way. My book club surprised us with frozen meals, our neighbors have helped us with yard work, and we've had treats made for us. Thank you to all our visitors and friends that have brought us lunch and gifts. Thanks to my s-sister, Amanda, for driving from Denver and helping with meals, running errands, and providing us with lots of laughter! And finally, thanks to my mom for flying otr and providing much needed emotional support.
Katy is on Day 22 of her chemotherapy cycle. That includes the 10 days she received chemo and the 12 days she has spent in the recovery period. Katy is still hospitalized at this time. The chemotherapy caused her to have mucositis, which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. Due to the pain, Katy was placed on a pain medication drip and put on IV nutrition as she was having trouble eating. The pain medication makes her tired. We are still at this point in her care.
However, we got good news early yesterday that her counts have begun to come up. Her mouth is looking like it is beginning to heal.
And then we got hit with our first bump in the road. The pulmonology team here has been ordering pulmonary function testing (PFT's) on Katy once a week. Her numbers have been dropping over the last 2-3 weeks, which is concerning. So yesterday, Katy had a CT scan, which confirms what the PFT's suggest. The small airways in her lungs are trapping air due to inflammation. The treatment of this is very high doses of IV Steroids and then tapering her down over the course of several weeks. Katy will also be receiving a medication that is new to me, for the problems in her lungs. This medication apparently has some pretty significant side effects, so I guess we'll have to wait and see how that may affect her.
And this is the fine balance that must be walked during her treatment of the leukemia. The proper treatment for her leukemia puts her donated lungs at risk. But some of the treatments for the lungs puts her at high infection risk, especially for fungal infections, which would then be terrible for her lungs. So round the circle we will go.
Yesterday morning we thought that Katy may be getting out of here in less than a week. Now, with the lung problem, I'm not sure if that still holds true. I think we have to take it day by day. Keep those positive thoughts coming. We can use them!
Friday, October 28, 2016
Saturday, October 22, 2016
Emily's Post from Instagram
This is to Katy, my beautiful strong sister, who just got diagnosed with leukemia. Somehow life gave her the cruelty of pulmonary hypertension, a lung transplant, lymphoma, and now Leukemia.
Katy, I can't tell you how sorry I am you're going through this. You have beaten this before, you can beat it again! I love you Katy, never forget that.
Please keep her in your thoughts 💘💘
Leukemia Diagnosis
On September 26, 2016 we learned that Katy had Acute Myeloid Leukemia. On September 27, we all met with Dr. Afify, Katy's Oncologist/Hematologist at Primary Children's Medical Center to learn more about this cancer. After being faced with the reality of this diagnosis towards the end of this 2 hour visit, Katy asked us and her doctors if she could leave for a short vacation. The information was so overwhelming and shocking, that Katy didn't even know if she wanted to pursue treatment.
Because we had caught this cancer earlier than most, due to Katy's continued blood monitoring, her team gave us a thumb's up for a short trip. This was decided on Tuesday. By Wednesday night I had made reservations at the Hotel del Coronado in San Diego, California. On Thursday, Katy received blood transfusions before the trip and on Friday morning we were off.
We spent 4 wonderful, bittersweet (mostly sweet) days on the beach and ocean enjoying life and each other. Katy got to try surfing, experienced a true spa massage, sunbathed, swam, looked for shells, went to the San Diego Zoo and relaxed. We stayed in a beautiful beach villa with our own hot tub. It was relaxing and beautiful. I wish I could go back to those 4 days.
Before we left, Katy had decided to at least start treatment. We arrived home the evening of Wednesday, October 5 and were at the hospital by 8am the next morning. Katy received more transfusions in the morning, and in the afternoon, she went into surgery to have a central line placed, another bone marrow aspiration for more testing, and a spinal tap to check for leukemia in her spinal fluid, as well as putting chemo directly into her spinal fluid. She came home that night. On Friday, October 7, Katy was admitted to Primary Children's Hospital to start her first 10 course of chemotherapy.
Katy receives 10 days of chemotherapy followed by blood count recovery in the hospital. The chemotherapy for leukemia wipes out your immune system completely. There is a high risk for serious infections, therefore Katy must stay in the hospital until her blood counts recover. This can take 2-3 weeks after treatment has ended.
Currently, Katy has been done with treatment for 4 days. So we are in the recovery period of her blood counts. The chemotherapy has caused terrible hand and mouth sores. It takes a toll on Katy's energy. Eating and talking are difficult for her right now. But overall, up to this point, she has done very well. There have been no serious infections, and for that I am thankful.
We will try to keep this blog up to date and full of information. Check back regularly. Katy has struggled much in medical challenges, but as a family, we are lucky she has a fighting spirit. We are also lucky to have so many caring people in our lives.
Christina
Some pictures from our trip...
Because we had caught this cancer earlier than most, due to Katy's continued blood monitoring, her team gave us a thumb's up for a short trip. This was decided on Tuesday. By Wednesday night I had made reservations at the Hotel del Coronado in San Diego, California. On Thursday, Katy received blood transfusions before the trip and on Friday morning we were off.
We spent 4 wonderful, bittersweet (mostly sweet) days on the beach and ocean enjoying life and each other. Katy got to try surfing, experienced a true spa massage, sunbathed, swam, looked for shells, went to the San Diego Zoo and relaxed. We stayed in a beautiful beach villa with our own hot tub. It was relaxing and beautiful. I wish I could go back to those 4 days.
Before we left, Katy had decided to at least start treatment. We arrived home the evening of Wednesday, October 5 and were at the hospital by 8am the next morning. Katy received more transfusions in the morning, and in the afternoon, she went into surgery to have a central line placed, another bone marrow aspiration for more testing, and a spinal tap to check for leukemia in her spinal fluid, as well as putting chemo directly into her spinal fluid. She came home that night. On Friday, October 7, Katy was admitted to Primary Children's Hospital to start her first 10 course of chemotherapy.
Katy receives 10 days of chemotherapy followed by blood count recovery in the hospital. The chemotherapy for leukemia wipes out your immune system completely. There is a high risk for serious infections, therefore Katy must stay in the hospital until her blood counts recover. This can take 2-3 weeks after treatment has ended.
Currently, Katy has been done with treatment for 4 days. So we are in the recovery period of her blood counts. The chemotherapy has caused terrible hand and mouth sores. It takes a toll on Katy's energy. Eating and talking are difficult for her right now. But overall, up to this point, she has done very well. There have been no serious infections, and for that I am thankful.
We will try to keep this blog up to date and full of information. Check back regularly. Katy has struggled much in medical challenges, but as a family, we are lucky she has a fighting spirit. We are also lucky to have so many caring people in our lives.
Christina
Some pictures from our trip...
Katy's Story
Katy, my daughter, is now a beautiful young woman of seventeen. I am proud of her for her intelligence, curiosity, humor, spunk, determination and sheer will to live and carry on, despite constant medical challenges. I don't think it is untruthful to say, that when a person meets Katy, she takes hold of their hearts. Part of it is her story, but mostly, it is Katy's inquisitive and sharp mind, her zest for life despite the hardships, and her tenacity to keep going. I'd like to share some background information about Katy, in case you do not know her story.
Katy was born with a cleft palate. This led us to the discovery that she had a genetic disorder called Stickler's Syndrome. Her first surgery was at 8 months old to repair the palate. She crawled and walked late, but we thought it was the Stickler's syndrome and had no worries about overcoming these small obstacles. Her determination was evident even at such a young age as 18 months. In her first 4 years, she was a delightful baby and toddler who always sat still and behaved wonderfully. We moved to Utah from Wyoming, she started preschool, danced, made friends and got a new sister, Emily.
After Emily was born, when Katy was 4, she started fainting. After, several tests, her pediatrician thought it could be Katy's heart. So, Dr. O'Mara sent Katy for an evaluation in cardiology. That day, July 1, 2003, we walked away with the diagnosis of Pulmonary Hypertension (PH), which is high blood pressure in the right side of your heart and lungs. It is progressive, and eventually terminal. There is no cure. Only medicines to potentially slow down the progression.
About a year later, after trying oral medications to manage the PH, Katy (age 5) started a continuous IV medication called Flolan. She had a central line placed in her chest, Jim and I learned how to prepare the medication every day (called mixing), learned all emergency protocols and hoped for the best. Katy suddenly became a different kid. She had energy and was able to do things that the other kids could do. She wasn't normal, but she was able to keep up better than she ever was before.
Now we fast forward. In the 9 years she was on the continuous infusion medications of Flolan, and later Remodulin, Katy continued to have many problems and procedures. Her body did not like central lines, and in 9 years, she had 10 central lines. One line stayed in for 4 years. She had heart catheterizations, multiple line infections, or just respiratory infections, with hospitalizations. I've lost count of how many PICC lines Katy has had (central lines that go in through your arm instead of chest). She had a retinal detachment. She also had multiple palate expanders and teeth pulled. She was poked, prodded, and invaded on a regular basis. Over time, Katy battled more and more for physical energy, to the point that going to school was difficult.
And then, on July 3, 2012, Katy went in for a routine heart catheterization. Her doctor at Stanford came to talk with me, and we learned that Katy was in right heart failure. It was time to list her for a double lung transplant. By September 2012, Katy was on the transplant list. We waited 14 months for her new set of lungs.
On November 20, 2013, we received the transplant call from Dr. Conrad. We were lucky enough to be in California already, due to checkups. On November 21, 2013, Katy received her double lung transplant at Lucile Packard Children's Hospital at Stanford. In hindsight, she recovered from the transplant well. We lived in California for 4 months post transplant. Before we left, Katy was diagnosed with medication induced diabetes. On March 8, 2014, Katy and I arrived home in Utah.
We continued to see her doctors at Stanford every month. By June, Katy's health was in decline. Ultimately, she was diagnosed with a form of Lymphoma called Post Transplant Lymphoproliferative Disease. She was in stage 4 and was very sick by the time she started chemotherapy. Her intestines were riddled with tumors and the first treatment of chemo almost killed her. The therapy worked so well, it left 10 holes in her intestines and she became septic. She spent a month in ICU and three months total in the hospital after the cancer diagnosis. Upon discharge, Katy and I lived in a studio apartment in Mountain View, CA while she finished her cancer treatments. Soon before coming home, Katy had more abdominal surgery to take down her ostemy and remove her gall bladder. The surgery went well, but several days later Katy was given too many fluids and ended up back in the ICU fighting for her life. Her lungs were filled with fluid and she had to be intubated. Yet another nightmare.
Amazingly, Katy rapidly recovered from this incident. She and I finally returned home on Jim's birthday, February 9, 2015. Katy was extremely debilitated. She spent the rest of the school year attending physical therapy, doctor's appointments and building her strength. By the following September, Katy finally returned to school and a pretty regular life. Overall, she has been healthy and happy, getting good grades, making friends, and learning to drive. Medical stuff is never out of our lives, but we were all looking toward a happy and healthy future, at least for a few more years.
Recently, the only thing plaguing Katy were dropping platelets and continued low white blood cell counts. Since her blood counts are checked on a regular basis, we were seeing a concerning trend. On September 20, 2016, Katy had an appointment with her oncologist/hematologist here at Primary Children's Hospital. Dr. Afify thought perhaps Katy was making antibodies that were killing her platelets and possibly her white blood cells. We started with some blood tests, but decided upon a bone marrow biopsy on Friday, September 23. By Monday, September 26, we were given the devastating diagnosis of Acute Myeloid Leukemia.
Obviously, I cannot give anyone the full story of Katy's medical challenges in a few short paragraphs. There are many gaps. But I can tell you that Katy has been put under anesthesia for procedures or surgeries probably 40 times or more. She has had multiple PICC lines placed while awake. She has endured endless amounts of blood draws, poking, prodding and too many indignities to count. All I can say is that my seventeen year old Katy is the bravest person I know. She keeps fighting and hoping for a better future. I am lucky to have such a young woman be my daughter.
Christina
Katy was born with a cleft palate. This led us to the discovery that she had a genetic disorder called Stickler's Syndrome. Her first surgery was at 8 months old to repair the palate. She crawled and walked late, but we thought it was the Stickler's syndrome and had no worries about overcoming these small obstacles. Her determination was evident even at such a young age as 18 months. In her first 4 years, she was a delightful baby and toddler who always sat still and behaved wonderfully. We moved to Utah from Wyoming, she started preschool, danced, made friends and got a new sister, Emily.
After Emily was born, when Katy was 4, she started fainting. After, several tests, her pediatrician thought it could be Katy's heart. So, Dr. O'Mara sent Katy for an evaluation in cardiology. That day, July 1, 2003, we walked away with the diagnosis of Pulmonary Hypertension (PH), which is high blood pressure in the right side of your heart and lungs. It is progressive, and eventually terminal. There is no cure. Only medicines to potentially slow down the progression.
About a year later, after trying oral medications to manage the PH, Katy (age 5) started a continuous IV medication called Flolan. She had a central line placed in her chest, Jim and I learned how to prepare the medication every day (called mixing), learned all emergency protocols and hoped for the best. Katy suddenly became a different kid. She had energy and was able to do things that the other kids could do. She wasn't normal, but she was able to keep up better than she ever was before.
Now we fast forward. In the 9 years she was on the continuous infusion medications of Flolan, and later Remodulin, Katy continued to have many problems and procedures. Her body did not like central lines, and in 9 years, she had 10 central lines. One line stayed in for 4 years. She had heart catheterizations, multiple line infections, or just respiratory infections, with hospitalizations. I've lost count of how many PICC lines Katy has had (central lines that go in through your arm instead of chest). She had a retinal detachment. She also had multiple palate expanders and teeth pulled. She was poked, prodded, and invaded on a regular basis. Over time, Katy battled more and more for physical energy, to the point that going to school was difficult.
And then, on July 3, 2012, Katy went in for a routine heart catheterization. Her doctor at Stanford came to talk with me, and we learned that Katy was in right heart failure. It was time to list her for a double lung transplant. By September 2012, Katy was on the transplant list. We waited 14 months for her new set of lungs.
On November 20, 2013, we received the transplant call from Dr. Conrad. We were lucky enough to be in California already, due to checkups. On November 21, 2013, Katy received her double lung transplant at Lucile Packard Children's Hospital at Stanford. In hindsight, she recovered from the transplant well. We lived in California for 4 months post transplant. Before we left, Katy was diagnosed with medication induced diabetes. On March 8, 2014, Katy and I arrived home in Utah.
We continued to see her doctors at Stanford every month. By June, Katy's health was in decline. Ultimately, she was diagnosed with a form of Lymphoma called Post Transplant Lymphoproliferative Disease. She was in stage 4 and was very sick by the time she started chemotherapy. Her intestines were riddled with tumors and the first treatment of chemo almost killed her. The therapy worked so well, it left 10 holes in her intestines and she became septic. She spent a month in ICU and three months total in the hospital after the cancer diagnosis. Upon discharge, Katy and I lived in a studio apartment in Mountain View, CA while she finished her cancer treatments. Soon before coming home, Katy had more abdominal surgery to take down her ostemy and remove her gall bladder. The surgery went well, but several days later Katy was given too many fluids and ended up back in the ICU fighting for her life. Her lungs were filled with fluid and she had to be intubated. Yet another nightmare.
Amazingly, Katy rapidly recovered from this incident. She and I finally returned home on Jim's birthday, February 9, 2015. Katy was extremely debilitated. She spent the rest of the school year attending physical therapy, doctor's appointments and building her strength. By the following September, Katy finally returned to school and a pretty regular life. Overall, she has been healthy and happy, getting good grades, making friends, and learning to drive. Medical stuff is never out of our lives, but we were all looking toward a happy and healthy future, at least for a few more years.
Recently, the only thing plaguing Katy were dropping platelets and continued low white blood cell counts. Since her blood counts are checked on a regular basis, we were seeing a concerning trend. On September 20, 2016, Katy had an appointment with her oncologist/hematologist here at Primary Children's Hospital. Dr. Afify thought perhaps Katy was making antibodies that were killing her platelets and possibly her white blood cells. We started with some blood tests, but decided upon a bone marrow biopsy on Friday, September 23. By Monday, September 26, we were given the devastating diagnosis of Acute Myeloid Leukemia.
Obviously, I cannot give anyone the full story of Katy's medical challenges in a few short paragraphs. There are many gaps. But I can tell you that Katy has been put under anesthesia for procedures or surgeries probably 40 times or more. She has had multiple PICC lines placed while awake. She has endured endless amounts of blood draws, poking, prodding and too many indignities to count. All I can say is that my seventeen year old Katy is the bravest person I know. She keeps fighting and hoping for a better future. I am lucky to have such a young woman be my daughter.
Christina
Subscribe to:
Comments (Atom)