Carina's Medical Fund
Donation protected
Carina is a five year old beautiful, happy little girl with Down Syndrome that was recently diagnosed with Leukemia and undergoing chemo treatment. We want to help Carina and her family with their high medical bills that she will have throughout her treatment.
Here is Carina's story...
On Feb 21st Carina woke us up at 4am in pain and said her chest hurt. We took her to the ER in Castle Rock where they did an EKG, a chest x-ray, a stomach x-ray and an ultra sound. She also had constipation but they did not see anything with her heart, stomach, etc. They sent us home and thought the pain would go away. Two days later she was still complaining of pain in her chest but also said her left arm hurt. She is left handed and stopped using her arm and hand. She also started complaining of growing pains in her legs. That night was a snow blizzard but Bret and I drove her to Children's Hospital South Campus since we were worried. They thought that maybe she had pneumonia and treated her with antibiotics. They also drew her blood and I asked about leukemia since kiddos with Down syndrome have a higher risk. Her blood did not show anything at all. We went home and started the antibiotics. Nothing changed. At this point the only thing that helped her pain was ibuprofen. She perked up with the ibuprofen but once it wore off, she was back in pain.Two days after the second ER visit we decided to take her to the ER at the main campus of Children's Hospital Denver (an hour drive from our house and our home for the past 21 days). She was happy and pain free once we were seen and they docs thought we were crazy. They watched her for a while but the Advil was still working. They sent us home.
We saw her pediatrician a few days later. He wanted us to follow-up with her cardiologist who could see her that same week. That appointment went great and her heart was fine. We also thought that maybe she was having reflux or extreme heart burn. They prescribed some meds for that and we were hopeful that would work. We also made an appointment with the GI specialist at Children's for the following week to explore this further.
On Sunday morning she woke up in extreme pain again. She would not move her arm at all and her heart rate was extremely high. Her legs were hurting and she just cried and cried. I drove her back to the ER at Children's Hospital (main campus) and this time they saw more of what we were experiencing. They treated her with morphine for the pain and did a full CBC. Her blood work still showed nothing. At this point I think they were nervous that she had a bacterial infection. I then told them that we wanted an elective admission and I said I was not leaving until we figured it out. They admitted us for the night and then decided it much be arthritis. They scheduled us to see a rheumatologist and sent us home the following day.
Thank goodness for our Down syndrome community! I have a friend who's daughter went through leukemia and just finished with treatments. We had been talking about Carina and her symptoms. Her daughter also had arm pain when she was diagnosed. I decided to call her that week and ask a few more questions. I wondered if leukemia could be in the bones but not show in the blood yet. We talked and I decided to call oncology at the hospital. I called and got a wonderful nurse that helped me. He had one of the docs look at Carina's file and said they would see us the following day.
I was so nervous but hopeful that they could help us. We saw a wonderful doc that did a full CBC again. They did not see any blasts in her blood (which they normally see for leukemia) and said they did not think it was leukemia. They also said that ibuprofen does not normally help with pain from leukemia. They referred us to the orthopedic oncologist who saw us the next day. They were great and ordered an MRI of her arm. Progress!!!
The MRI was definitely abnormal and they decided she had something called CRMO or NBO. This is basically a non-bacterial bone disorder that is treated with a drug similar to Advil or Aleve. It is rare but she had all of the symptoms and it made sense. They scheduled us to see a specialist for this and got us set with some new meds. Carina was a new girl! The meds were working and we were excited to have some answers. About a week went by and everything was good. Then she stopped responding to the meds.
We had planned to go to the mountains with the kids for spring break and we decided to still go. I called both the oncologist and the orthopedic oncologist and told them the situation. They said they would get together and discuss our next steps.
We took Carina to Copper Mountain where the altitude is 9700 feet. Everything was going okay for a few days and we were managing pain with Advil. Then on the third day she had a severe flare-up with pain in her legs. We actually ended up calling 911 and going to the ER again. It's a sad situation when the docs at the ER don't even know what to do with you. We told them the whole story and said we would head back to Children's the following day. They helped us manage the pain and sent us back to the condo with some meds for the remaining night.
The next day the orthopedic oncologist at Children's rushed us in. He got Carina on some strong pain killers and ordered a biopsy of her arm for that evening at 5pm. They were also going to check her bone marrow since that is how they see leukemia sometimes. We ended up staying the night since her oxygen was low from the anesthesia and went home the next day waiting for the results.
The oncologist called late afternoon and told me that they suspected leukemia. She said they did a rush on the bone marrow they could see from the arm biopsy but would have to do a bone marrow aspiration in her pelvic bone to confirm for sure. She told me we would be admitted the following day where we would do this test along with a spinal tap. She said if it was confirmed, we would be staying at the hospital for the next month so to come prepared to stay. The rest is history.
Sorry for the long story but I wanted everyone to hear the road we have been down. By the time we finally figured this out she was in extreme pain. We were so glad to finally get her help. She was suffering so much and it broke my heart. Thank you all again for the continued prayers!!! We appreciate them so much. We have some many wonderful friends and family and could not do this without you. XOXO
Here is Carina's story...
On Feb 21st Carina woke us up at 4am in pain and said her chest hurt. We took her to the ER in Castle Rock where they did an EKG, a chest x-ray, a stomach x-ray and an ultra sound. She also had constipation but they did not see anything with her heart, stomach, etc. They sent us home and thought the pain would go away. Two days later she was still complaining of pain in her chest but also said her left arm hurt. She is left handed and stopped using her arm and hand. She also started complaining of growing pains in her legs. That night was a snow blizzard but Bret and I drove her to Children's Hospital South Campus since we were worried. They thought that maybe she had pneumonia and treated her with antibiotics. They also drew her blood and I asked about leukemia since kiddos with Down syndrome have a higher risk. Her blood did not show anything at all. We went home and started the antibiotics. Nothing changed. At this point the only thing that helped her pain was ibuprofen. She perked up with the ibuprofen but once it wore off, she was back in pain.Two days after the second ER visit we decided to take her to the ER at the main campus of Children's Hospital Denver (an hour drive from our house and our home for the past 21 days). She was happy and pain free once we were seen and they docs thought we were crazy. They watched her for a while but the Advil was still working. They sent us home.
We saw her pediatrician a few days later. He wanted us to follow-up with her cardiologist who could see her that same week. That appointment went great and her heart was fine. We also thought that maybe she was having reflux or extreme heart burn. They prescribed some meds for that and we were hopeful that would work. We also made an appointment with the GI specialist at Children's for the following week to explore this further.
On Sunday morning she woke up in extreme pain again. She would not move her arm at all and her heart rate was extremely high. Her legs were hurting and she just cried and cried. I drove her back to the ER at Children's Hospital (main campus) and this time they saw more of what we were experiencing. They treated her with morphine for the pain and did a full CBC. Her blood work still showed nothing. At this point I think they were nervous that she had a bacterial infection. I then told them that we wanted an elective admission and I said I was not leaving until we figured it out. They admitted us for the night and then decided it much be arthritis. They scheduled us to see a rheumatologist and sent us home the following day.
Thank goodness for our Down syndrome community! I have a friend who's daughter went through leukemia and just finished with treatments. We had been talking about Carina and her symptoms. Her daughter also had arm pain when she was diagnosed. I decided to call her that week and ask a few more questions. I wondered if leukemia could be in the bones but not show in the blood yet. We talked and I decided to call oncology at the hospital. I called and got a wonderful nurse that helped me. He had one of the docs look at Carina's file and said they would see us the following day.
I was so nervous but hopeful that they could help us. We saw a wonderful doc that did a full CBC again. They did not see any blasts in her blood (which they normally see for leukemia) and said they did not think it was leukemia. They also said that ibuprofen does not normally help with pain from leukemia. They referred us to the orthopedic oncologist who saw us the next day. They were great and ordered an MRI of her arm. Progress!!!
The MRI was definitely abnormal and they decided she had something called CRMO or NBO. This is basically a non-bacterial bone disorder that is treated with a drug similar to Advil or Aleve. It is rare but she had all of the symptoms and it made sense. They scheduled us to see a specialist for this and got us set with some new meds. Carina was a new girl! The meds were working and we were excited to have some answers. About a week went by and everything was good. Then she stopped responding to the meds.
We had planned to go to the mountains with the kids for spring break and we decided to still go. I called both the oncologist and the orthopedic oncologist and told them the situation. They said they would get together and discuss our next steps.
We took Carina to Copper Mountain where the altitude is 9700 feet. Everything was going okay for a few days and we were managing pain with Advil. Then on the third day she had a severe flare-up with pain in her legs. We actually ended up calling 911 and going to the ER again. It's a sad situation when the docs at the ER don't even know what to do with you. We told them the whole story and said we would head back to Children's the following day. They helped us manage the pain and sent us back to the condo with some meds for the remaining night.
The next day the orthopedic oncologist at Children's rushed us in. He got Carina on some strong pain killers and ordered a biopsy of her arm for that evening at 5pm. They were also going to check her bone marrow since that is how they see leukemia sometimes. We ended up staying the night since her oxygen was low from the anesthesia and went home the next day waiting for the results.
The oncologist called late afternoon and told me that they suspected leukemia. She said they did a rush on the bone marrow they could see from the arm biopsy but would have to do a bone marrow aspiration in her pelvic bone to confirm for sure. She told me we would be admitted the following day where we would do this test along with a spinal tap. She said if it was confirmed, we would be staying at the hospital for the next month so to come prepared to stay. The rest is history.
Sorry for the long story but I wanted everyone to hear the road we have been down. By the time we finally figured this out she was in extreme pain. We were so glad to finally get her help. She was suffering so much and it broke my heart. Thank you all again for the continued prayers!!! We appreciate them so much. We have some many wonderful friends and family and could not do this without you. XOXO
Organizer
Stacie Walker Esslinger
Organizer
Larkspur, CO