Help Rue Beat Cancer!
I am the father of WillowRue Everlee Sieburg. Her mother TateLyn and I are writing this story to tell you about our daughter.
WillowRue who we call Rue is a beautiful baby who has been through a lot and a lot more to come.
Rue was born on 12/11/2020, after a high risk pregnancy, where Mom had hyperemeisis, circumvallate placenta, and preterm labor symptoms starting in October. While Rue was being born her heart rate dipped low, but was born healthy at 39 weeks but was small for gestational age and weighed 5lbs 15oz.
She had high bilirubin level for a while, needed to be under a heat lamp, and had low blood sugar for a bit while we were in the hospital. We went home after 2 days in the hospital.
She was beautiful and everything we hoped for. Shortly after coming home we had noticed some breathing struggles at bed time, and she could not sleep on her back. After countless trips to the pediatrician, anti-acid medication, trying formula, a lip tie cutting, lots of projectile vomiting, intense pain and screaming for hours and an inability to gain weight we went into the hospital on January 30th to figure out what was happening to our little girl.
We spent 10 frustrating days in the hospital, where medical doctors refused exams, and did everything they could to tell us she had a simple prognosis of complex acid reflux, and a milk protein allergy. With no plan other than wait for the milk to get out of her system and Elecare formula we asked to go home and follow the treatment plan.
We were home a week and things seemed to be looking up, she gained weight and for the first time since birth gained enough to be a pound above birth weight. Our hopes were high, and were looking forward to her symptoms reducing because she was in so much pain every day.
One thing remained constant through being at the hospital and it was that she had this fluttering back and forth movement of her eyes. We mentioned this at our hospital stay and we were told we were hypochondriacs and crazy.
We went to the pediatricians this past Monday, and our wonderful pediatrician was concerned because she lost weight again. She was at a loss for what was going on and wanted to schedule an MRI, and I mentioned the eye movement again and she pushed for an urgent cranial ultrasound.
We went to a local hospital right away and struggled with the wait because of how long I had been out of work, and we have struggled to earn money of the past month. After the ultrasound we said can we just go as we urgently needed to get home.
On our drive home, we received a call from our pediatrician, who told us we needed to turn around and immediately go to the ER because our Rue had a brain bleed and fluid on the brain.
Once at the ER, we were told only one parent could be with Rue, and I lost it because I had no idea what was going to happen and I was allowed to stay at the hospital before.
After waiting hours I was able to return to the hospital, and we found out that Rue had a large tumor under her brain near the optical nerves and that she would need a shunt to remove the fluid and decrease the pressure in her skull, and likely surgery to remove the tumor if possible.
The plan was to put her under general anesthesia and get a longer MRI to get the best picture of the tumor to enable the neurosurgeon to have the best plan of action.
The oncologist came in to discuss the results of the MRI. She let us know that Rue’s tumor is cancerous, and has spread throughout her brain and her spine.
Every ounce of strength we have has been taken from us, the risks are high, and we may possibly lose our daughter.
Rue went in for an all day surgery for the shunt and biopsy. We will wait for 2 days for pathology to identify the type of cancer, and a treatment plan will be created at that point. Rue is too young for radiation and not all cancers can be treated through chemotherapy.
Rue made it through an we found out she had an extremely rare cancer called Pilomyxoid Glioma. We have been living in the hospital the past 2 months while she went through a surgery to have a central line placed, and for a G-Tube to be placed because the tumors have a high caloric demand, and she continued to puke due to the tumors.
This past weekend Rue started her second cycle of chemotherapy, and we await for her counts to be good enough for her to come home for 2 weeks.
The treatment plan over the next year is 2 weeks in the hospital and 2 weeks at home. This makes working extremely difficult and Rue will need constant care and medical treatment.
So Rue’s future is uncertain, we are heartbroken trying to stay hopeful for a miracle. I am the only one of us working and I have not been able to work with all of the medical issues going on with Rue.
If you can find it in your heart to donate whatever you can so that our family can continue to fight this, for the unforeseeable future please do.
WillowRue who we call Rue is a beautiful baby who has been through a lot and a lot more to come.
Rue was born on 12/11/2020, after a high risk pregnancy, where Mom had hyperemeisis, circumvallate placenta, and preterm labor symptoms starting in October. While Rue was being born her heart rate dipped low, but was born healthy at 39 weeks but was small for gestational age and weighed 5lbs 15oz.
She had high bilirubin level for a while, needed to be under a heat lamp, and had low blood sugar for a bit while we were in the hospital. We went home after 2 days in the hospital.
She was beautiful and everything we hoped for. Shortly after coming home we had noticed some breathing struggles at bed time, and she could not sleep on her back. After countless trips to the pediatrician, anti-acid medication, trying formula, a lip tie cutting, lots of projectile vomiting, intense pain and screaming for hours and an inability to gain weight we went into the hospital on January 30th to figure out what was happening to our little girl.
We spent 10 frustrating days in the hospital, where medical doctors refused exams, and did everything they could to tell us she had a simple prognosis of complex acid reflux, and a milk protein allergy. With no plan other than wait for the milk to get out of her system and Elecare formula we asked to go home and follow the treatment plan.
We were home a week and things seemed to be looking up, she gained weight and for the first time since birth gained enough to be a pound above birth weight. Our hopes were high, and were looking forward to her symptoms reducing because she was in so much pain every day.
One thing remained constant through being at the hospital and it was that she had this fluttering back and forth movement of her eyes. We mentioned this at our hospital stay and we were told we were hypochondriacs and crazy.
We went to the pediatricians this past Monday, and our wonderful pediatrician was concerned because she lost weight again. She was at a loss for what was going on and wanted to schedule an MRI, and I mentioned the eye movement again and she pushed for an urgent cranial ultrasound.
We went to a local hospital right away and struggled with the wait because of how long I had been out of work, and we have struggled to earn money of the past month. After the ultrasound we said can we just go as we urgently needed to get home.
On our drive home, we received a call from our pediatrician, who told us we needed to turn around and immediately go to the ER because our Rue had a brain bleed and fluid on the brain.
Once at the ER, we were told only one parent could be with Rue, and I lost it because I had no idea what was going to happen and I was allowed to stay at the hospital before.
After waiting hours I was able to return to the hospital, and we found out that Rue had a large tumor under her brain near the optical nerves and that she would need a shunt to remove the fluid and decrease the pressure in her skull, and likely surgery to remove the tumor if possible.
The plan was to put her under general anesthesia and get a longer MRI to get the best picture of the tumor to enable the neurosurgeon to have the best plan of action.
The oncologist came in to discuss the results of the MRI. She let us know that Rue’s tumor is cancerous, and has spread throughout her brain and her spine.
Every ounce of strength we have has been taken from us, the risks are high, and we may possibly lose our daughter.
Rue went in for an all day surgery for the shunt and biopsy. We will wait for 2 days for pathology to identify the type of cancer, and a treatment plan will be created at that point. Rue is too young for radiation and not all cancers can be treated through chemotherapy.
Rue made it through an we found out she had an extremely rare cancer called Pilomyxoid Glioma. We have been living in the hospital the past 2 months while she went through a surgery to have a central line placed, and for a G-Tube to be placed because the tumors have a high caloric demand, and she continued to puke due to the tumors.
This past weekend Rue started her second cycle of chemotherapy, and we await for her counts to be good enough for her to come home for 2 weeks.
The treatment plan over the next year is 2 weeks in the hospital and 2 weeks at home. This makes working extremely difficult and Rue will need constant care and medical treatment.
So Rue’s future is uncertain, we are heartbroken trying to stay hopeful for a miracle. I am the only one of us working and I have not been able to work with all of the medical issues going on with Rue.
If you can find it in your heart to donate whatever you can so that our family can continue to fight this, for the unforeseeable future please do.
