Once Kinlee was admitted to the PICU, she was
immediately given 2 IVs and was sedated. Throughout the night they ran
bloodwork and she spent 2 hours in MRI. Thankfully, my brother and
sister-in-law took Caylee home with them.
The news over the next few days was not good. The Peds Hematology-Oncology team and the Neurosurgeon met with Lee and I (and my father and brother were in attendance as well) to report what they had learned from tests. The original diagnosis was that the the mass was a tumor called a PNET tumor. These tumors are rapidly growing, invasive and almost always terminal. Because of it's size at discovery at 10 wks old, it was assumed that she was born with it. Because all of my prenatal care was through MUSC affiliated Ob-Gyns, the docs were able to pull up my last ultrasound pics, but it was noted that her head was too far down in my pelvis to get a good picture of her head. The prognosis for Kinlee was grim. Kids with PNET tumors have a 3% chance of surviving 3 years. The team of docs said that the only treatment they could provide was chemotherapy, in hopes that it would shrink the tumor to a more manageable size. The Neurosurgeon did not want to disrupt the brain at all. Not even to do a biopsy to study the tumor to formally diagnose it. We, of course, were crushed.
With our encouragement and the doc's dedication they kept running tests and found that a tumor marker called AFP (which is only supposed to be present in-utero and supposed to decline after birth until it is at 0) kept rising, and that indicated that it may not be a PNET tumor. The Neurosurgeon decided to perform a needle biopsy. A portion of those tumor cells harvested were sent to Duke and portion was sent to MUSC labs. They both determined that it was a tumor known as an Immature Teratoma and was much less lethal, but there was still the matter of size to contend with. The Neurosurgeon, named Dr. Glazier, was concerned that changing the pressure in her cranium at all could result in bad news. But this was a sink or swim situation, because of how rapidly it was growing. I have now come to realize that he knew that if it stayed in, we would lose her. But he was still hesitant to perform the surgery, and understandably so. He had this crazy mom that was heartbroken begging at his feet to work a miracle. He finally agreed to the 11 hour craniotomy resection of a 10x5x6cm tumor and my poor tiny baby had to climb an uphill battle at such a tender age. All of this, from discovery to resection, occured in one week's time.
After the craniotomy, Kinlee was kept in the PICU in an induced coma for 28 days. They wanted no neural stimulation. They had placed a shunt in her head to regulate the cranial pressure and then we all just prayed.......
The news over the next few days was not good. The Peds Hematology-Oncology team and the Neurosurgeon met with Lee and I (and my father and brother were in attendance as well) to report what they had learned from tests. The original diagnosis was that the the mass was a tumor called a PNET tumor. These tumors are rapidly growing, invasive and almost always terminal. Because of it's size at discovery at 10 wks old, it was assumed that she was born with it. Because all of my prenatal care was through MUSC affiliated Ob-Gyns, the docs were able to pull up my last ultrasound pics, but it was noted that her head was too far down in my pelvis to get a good picture of her head. The prognosis for Kinlee was grim. Kids with PNET tumors have a 3% chance of surviving 3 years. The team of docs said that the only treatment they could provide was chemotherapy, in hopes that it would shrink the tumor to a more manageable size. The Neurosurgeon did not want to disrupt the brain at all. Not even to do a biopsy to study the tumor to formally diagnose it. We, of course, were crushed.
With our encouragement and the doc's dedication they kept running tests and found that a tumor marker called AFP (which is only supposed to be present in-utero and supposed to decline after birth until it is at 0) kept rising, and that indicated that it may not be a PNET tumor. The Neurosurgeon decided to perform a needle biopsy. A portion of those tumor cells harvested were sent to Duke and portion was sent to MUSC labs. They both determined that it was a tumor known as an Immature Teratoma and was much less lethal, but there was still the matter of size to contend with. The Neurosurgeon, named Dr. Glazier, was concerned that changing the pressure in her cranium at all could result in bad news. But this was a sink or swim situation, because of how rapidly it was growing. I have now come to realize that he knew that if it stayed in, we would lose her. But he was still hesitant to perform the surgery, and understandably so. He had this crazy mom that was heartbroken begging at his feet to work a miracle. He finally agreed to the 11 hour craniotomy resection of a 10x5x6cm tumor and my poor tiny baby had to climb an uphill battle at such a tender age. All of this, from discovery to resection, occured in one week's time.
After the craniotomy, Kinlee was kept in the PICU in an induced coma for 28 days. They wanted no neural stimulation. They had placed a shunt in her head to regulate the cranial pressure and then we all just prayed.......
Part III: Uphill Battle
After abt 2 weeks of PICU life, they started to cut back her sedation and pain meds for short periods to perform different tests of her neurological function. This was no easy evaluation of a 3 month old baby! It was very unclear for a while what damage was done to her brain structure and function as the result of the resection. The meds they were piling on to control pain and stimulation made it very hard to determine whether she was "in there" or not. I spent countless hours with my head laid on her body in an effort to execute a reverse kangaroo care or I would lay both hands (which covered her whole body) on her; trying to keep her on OUR side of the world, trying to let her know we were with her and she wasn't alone with as little stimulation as possible. I also witnessed several of our family members do the same. It was so sweet! Early on in the PICU, my brother and sister-in-law asked their then Pastor, now my Pastor Fred Richard from Northwood to come visit with us. And we all stood around her hospital bed as Pastor Fred prayed and prayed for us to find peace and comfort in God's will. He prayed that we knew that Kinlee belonged to Him and and not us. He prayed that we continue to praise God and find blessings in these circumstances. And I was thinking "NO! THAT'S NOT WHAT WE'RE PRAYING FOR! WE ARE PRAYING FOR A FULL RECOVERY!" I'm still not sure if I said that out loud or not. Maybe my brother could confirm or deny! But Pastor Fred could not have taught me more (though it took a while to process) in that half hour about faith in a loving and graceful God that would fulfill our every need if he had purposefully written a sermon aimed directly at my heart.
It wasn't until about a month later that I found out that he had a daughter that had passed on at the age of 7 because of the devil Leukemia. He and his wife, Soni will forever have my highest respect because of the grace they showed us, and they never even mentioned her to me, even though he mentions her in sermons often. Another elder of Northwood, Doug Cotton would come by nearly every day, and I still think of him as Kinlee's "God-Uncle", and they still have a cute little relationship, even though Kinlee doesn't know why!
About 3 weeks after the resection they began the process of weaning her from the ventilator so that she could be moved from the PICU to a room on the 7th floor and that was awesome! She was mine, ours again and we could finally sleep in the room with her! The weaning process from the ventilator and the massive doses of morphine was tough, but she made it through. When she was fully off the sedation meds and we could finally get her to make eye contact, I was talking really sweet to her and she smiled, but only the left side of her mouth turned up. As she became more and more alert, it became apparent that the surgery had resulted in hemiparesis of the entire right half of her body. At that point we worried whether she would walk, but we knew we were looking at the best case scenario for how we started this cancer journey out.
Kinlee was originally scheduled to begin her first round of chemo before leaving the hospital, which required abt 3 hours of recieving meds through an IV and then 6 days of observation. She was so little they didn't want to take any chances should her tiny body have adverse reactions to the toxic meds they were to pump into her. Chemotherapy is designed to kill every dividing cell in your body. This is not good news for adults, but it can be especially harmful for growing babies and children.
In what was another of countless blessings, Hem-Onc said we could postpone chemo, since no sign of the tumor remained. We got to go home and be a family again for a week! It was Super Bowl Sunday (one of Lee's favorite days of the year) when we were discharged that first time and did we go straight home? Nope, we went to my parent's annual Super Bowl party and put sleeping Kinlee in her car seat on my mom and dad's bed and only let a select few near her that night!
Kinlee recieved 3 months of chemo; administered over 3 or 4 day hospital stays. We were so blessed to have Caylee well taken care of throughout all of this by family members thay were SO GOOD to her!
Kinlee was supposed to have 4th round of chemo, but her lab work indicated that it should be postponed and then it was removed from the plan completey! So by the time she was 7 months old, Kinlee was a cancer survivor!! She had a lot of recovering ahead of her, and no one could predict how she would develop, but she was going to live!! Praise God!!
After abt 2 weeks of PICU life, they started to cut back her sedation and pain meds for short periods to perform different tests of her neurological function. This was no easy evaluation of a 3 month old baby! It was very unclear for a while what damage was done to her brain structure and function as the result of the resection. The meds they were piling on to control pain and stimulation made it very hard to determine whether she was "in there" or not. I spent countless hours with my head laid on her body in an effort to execute a reverse kangaroo care or I would lay both hands (which covered her whole body) on her; trying to keep her on OUR side of the world, trying to let her know we were with her and she wasn't alone with as little stimulation as possible. I also witnessed several of our family members do the same. It was so sweet! Early on in the PICU, my brother and sister-in-law asked their then Pastor, now my Pastor Fred Richard from Northwood to come visit with us. And we all stood around her hospital bed as Pastor Fred prayed and prayed for us to find peace and comfort in God's will. He prayed that we knew that Kinlee belonged to Him and and not us. He prayed that we continue to praise God and find blessings in these circumstances. And I was thinking "NO! THAT'S NOT WHAT WE'RE PRAYING FOR! WE ARE PRAYING FOR A FULL RECOVERY!" I'm still not sure if I said that out loud or not. Maybe my brother could confirm or deny! But Pastor Fred could not have taught me more (though it took a while to process) in that half hour about faith in a loving and graceful God that would fulfill our every need if he had purposefully written a sermon aimed directly at my heart.
It wasn't until about a month later that I found out that he had a daughter that had passed on at the age of 7 because of the devil Leukemia. He and his wife, Soni will forever have my highest respect because of the grace they showed us, and they never even mentioned her to me, even though he mentions her in sermons often. Another elder of Northwood, Doug Cotton would come by nearly every day, and I still think of him as Kinlee's "God-Uncle", and they still have a cute little relationship, even though Kinlee doesn't know why!
About 3 weeks after the resection they began the process of weaning her from the ventilator so that she could be moved from the PICU to a room on the 7th floor and that was awesome! She was mine, ours again and we could finally sleep in the room with her! The weaning process from the ventilator and the massive doses of morphine was tough, but she made it through. When she was fully off the sedation meds and we could finally get her to make eye contact, I was talking really sweet to her and she smiled, but only the left side of her mouth turned up. As she became more and more alert, it became apparent that the surgery had resulted in hemiparesis of the entire right half of her body. At that point we worried whether she would walk, but we knew we were looking at the best case scenario for how we started this cancer journey out.
Kinlee was originally scheduled to begin her first round of chemo before leaving the hospital, which required abt 3 hours of recieving meds through an IV and then 6 days of observation. She was so little they didn't want to take any chances should her tiny body have adverse reactions to the toxic meds they were to pump into her. Chemotherapy is designed to kill every dividing cell in your body. This is not good news for adults, but it can be especially harmful for growing babies and children.
In what was another of countless blessings, Hem-Onc said we could postpone chemo, since no sign of the tumor remained. We got to go home and be a family again for a week! It was Super Bowl Sunday (one of Lee's favorite days of the year) when we were discharged that first time and did we go straight home? Nope, we went to my parent's annual Super Bowl party and put sleeping Kinlee in her car seat on my mom and dad's bed and only let a select few near her that night!
Kinlee recieved 3 months of chemo; administered over 3 or 4 day hospital stays. We were so blessed to have Caylee well taken care of throughout all of this by family members thay were SO GOOD to her!
Kinlee was supposed to have 4th round of chemo, but her lab work indicated that it should be postponed and then it was removed from the plan completey! So by the time she was 7 months old, Kinlee was a cancer survivor!! She had a lot of recovering ahead of her, and no one could predict how she would develop, but she was going to live!! Praise God!!
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| At the Super Bowl party straight from the hospital, February 1, 2009 |
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| Kinlee's First Easter April 12th, 2009, after 2 chemo infusions |
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