Laney's Got This!
Donation protected
Our sweet Laney graduated from Pre-K in May of 2017 and was beginning to enjoy her summer vacation before starting kindergarten in the Fall when her Mom, Nikki noticed a lump on her thyroid that suddenly developed over the course of one day. Despite a misdiagnosis from a local hospital, she eventually found her way to a physician who knew this was not strep throat or a swollen lymph node. He suspected a non-threatening thyroglossal duct cyst and surgically removed it...Laney's first surgery.
However, the biopsy of the tissue was found to be something more serious than a cyst...she was diagnosed with Langerhans Cell Histiocytosis, not a true cancer but a rare disease caused by an overproduction of white blood cells that is treated similarly to cancer. The doctor who removed the tumor informed her parents that he removed what he could but there were remnants left behind the breastbone. Testing was started to make sure there were no other lesions in her beautiful little body as this disease can affect multiple systems including the brain, bone, and lungs. Little did we know that this would become a routine this summer...early morning hour-long rides to Cardinal Glennon in St. Louis, waiting, needle sticks, ultrasounds, MRI, CT, more waiting and consultations with her oncologist and then the long ride home...
All the tests at that point were negative and we all thought she was in the clear.
However, this disease, as we have learned, can cause tumors/lesions/growths to develop very rapidly and nothing abnormal like a swelling or fever should be dismissed. Before her 6-week follow-up of that first surgery, Nikki noticed a swelling the size of the palm of her hand on Laney's left chest. She was scheduled for an ultrasound and "something" was discovered underneath the skin but over the ribs. A subsequent MRI was scheduled for 2 weeks out, but before that could happen, the incision on her neck which had been healed up suddenly opened and began expelling tissue that was actually the tumorous cells which had been left behind. A worrisome development which prompted another hospital visit even before the MRI! Laney was examined by her ENT and the decision was made to revise this wound after coordinating her course of treatment with the oncologist.
The day of the MRI was the real game-changer for all of us...
Her oncologist, Dr. Hugge at Cardinal Glennon came into the exam/conference room and started with, "Let me show you her images..." and we knew....even though he carefully censored his words so he did not say cancer or chemotherapy, there was no doubt he was talking about something serious that threatened Laney's life. He explained that the tumor in her neck was actually part of the same tumor that was now invading her tissues over her ribs AND under the ribs inside the chest wall, therefore it could not be surgically removed and a yearlong course of chemotherapy was the treatment. He offered us his reassurance that this is usually successful and that even though it will be extremely hard on Laney's body, he had no reason to not expect a full recovery. And that is our hope and prayer always....
Her treatment begins with an overnight stay at the hospital after surgery to place a port in her chest to administer the chemotherapy over the next year, as well as a PET scan to check for any other tumors anywhere in her body and then she will receive her first dose of chemotherapy before going home. After this, she will come back weekly for at least the next 5 weeks for her chemo. She will then have more tests and imaging to see if the medicine is working. If it is shrinking the tumors as hoped, she will move to the continuation phase of treatment and her chemo will be scheduled for every 3 weeks for the rest of the yearlong course. If it is not doing as well as hoped then she will continue the weekly chemo for another 6 weeks with more follow-up to check the progress. In any event, the course of treatment is scheduled for a whole year.
This is all pretty scary for a 5 year old child, not to mention her Family and Friends who have all come to love this sparkly little girl! We have 2 needs above and beyond all the emotional support that has been lovingly given to her and her Family...prayers and financial assistance. A prayer can be as simple as a silent, heartfelt request for strength, healing and peace and when we all do that, miracles can and do happen so please keep Laney in your prayers!
Additionally, the practicality of such a situation affects the finances. Family comes first and holding a job to make ends meet is impossible when parents must be available 24/7 to care for their loved ones. As you can imagine, weekly trips to St. Louis will require a safely maintained vehicle and fuel. Food expenses while waiting for appointments will quickly add up even if we bring much of our own snacks and drinks. And we expect Laney will be attending her private church school for her Kindergarten year and there is registration and tuition expenses that will come along with that. I am sure there will be unexpected bumps in the road but it would be a true godsend to not have to worry, "How are we going to pay for this?"
If you find it in your heart to help make Laney's journey a little easier this coming year, please know you are very much appreciated by all of her Family! With your love and support, LANEY'S GOT THIS!
Thank you, Grandma Geri
However, the biopsy of the tissue was found to be something more serious than a cyst...she was diagnosed with Langerhans Cell Histiocytosis, not a true cancer but a rare disease caused by an overproduction of white blood cells that is treated similarly to cancer. The doctor who removed the tumor informed her parents that he removed what he could but there were remnants left behind the breastbone. Testing was started to make sure there were no other lesions in her beautiful little body as this disease can affect multiple systems including the brain, bone, and lungs. Little did we know that this would become a routine this summer...early morning hour-long rides to Cardinal Glennon in St. Louis, waiting, needle sticks, ultrasounds, MRI, CT, more waiting and consultations with her oncologist and then the long ride home...All the tests at that point were negative and we all thought she was in the clear.
However, this disease, as we have learned, can cause tumors/lesions/growths to develop very rapidly and nothing abnormal like a swelling or fever should be dismissed. Before her 6-week follow-up of that first surgery, Nikki noticed a swelling the size of the palm of her hand on Laney's left chest. She was scheduled for an ultrasound and "something" was discovered underneath the skin but over the ribs. A subsequent MRI was scheduled for 2 weeks out, but before that could happen, the incision on her neck which had been healed up suddenly opened and began expelling tissue that was actually the tumorous cells which had been left behind. A worrisome development which prompted another hospital visit even before the MRI! Laney was examined by her ENT and the decision was made to revise this wound after coordinating her course of treatment with the oncologist.
The day of the MRI was the real game-changer for all of us...
Her oncologist, Dr. Hugge at Cardinal Glennon came into the exam/conference room and started with, "Let me show you her images..." and we knew....even though he carefully censored his words so he did not say cancer or chemotherapy, there was no doubt he was talking about something serious that threatened Laney's life. He explained that the tumor in her neck was actually part of the same tumor that was now invading her tissues over her ribs AND under the ribs inside the chest wall, therefore it could not be surgically removed and a yearlong course of chemotherapy was the treatment. He offered us his reassurance that this is usually successful and that even though it will be extremely hard on Laney's body, he had no reason to not expect a full recovery. And that is our hope and prayer always....
Her treatment begins with an overnight stay at the hospital after surgery to place a port in her chest to administer the chemotherapy over the next year, as well as a PET scan to check for any other tumors anywhere in her body and then she will receive her first dose of chemotherapy before going home. After this, she will come back weekly for at least the next 5 weeks for her chemo. She will then have more tests and imaging to see if the medicine is working. If it is shrinking the tumors as hoped, she will move to the continuation phase of treatment and her chemo will be scheduled for every 3 weeks for the rest of the yearlong course. If it is not doing as well as hoped then she will continue the weekly chemo for another 6 weeks with more follow-up to check the progress. In any event, the course of treatment is scheduled for a whole year.
This is all pretty scary for a 5 year old child, not to mention her Family and Friends who have all come to love this sparkly little girl! We have 2 needs above and beyond all the emotional support that has been lovingly given to her and her Family...prayers and financial assistance. A prayer can be as simple as a silent, heartfelt request for strength, healing and peace and when we all do that, miracles can and do happen so please keep Laney in your prayers!
Additionally, the practicality of such a situation affects the finances. Family comes first and holding a job to make ends meet is impossible when parents must be available 24/7 to care for their loved ones. As you can imagine, weekly trips to St. Louis will require a safely maintained vehicle and fuel. Food expenses while waiting for appointments will quickly add up even if we bring much of our own snacks and drinks. And we expect Laney will be attending her private church school for her Kindergarten year and there is registration and tuition expenses that will come along with that. I am sure there will be unexpected bumps in the road but it would be a true godsend to not have to worry, "How are we going to pay for this?"
If you find it in your heart to help make Laney's journey a little easier this coming year, please know you are very much appreciated by all of her Family! With your love and support, LANEY'S GOT THIS!
Thank you, Grandma Geri
Organizer
Geri Sabo
Organizer
Jerseyville, IL
