Sorry for the late post.... Some good news finally. The cancer in the brain is localized, it does not look to have spread anywhere according to the pet scan. However there is a spot on her right hip that did light up on the scan but the radiologist is 100% sure it is her ovary. I was not aware that your liver, bladder and ovaries can light up on a scan an it not be cancer. Regardless we have decided to remove the ovary. The spot on the brain cannot be removed surgically right now. It is involved with the nerves that control the left side of her face. Going in would be risking vision loss, hearing loss, permanent facial damage and I know that we or most people would rather that than less of a chance of a cure however discussing it with the neurosurgeon and the onc doctor it's not worth it bc we still may not be able to get the whole tumor and that would be the point of surgery. Wednesday she will be having her port placed, removal of the ovary and a bone marrow biopsy. We are still waiting on final results of the lumbar puncture, which we should have by Wednesday. She will need chemo and radiation again. Most of her treatment will be home because it is 2 pills she will be taking. She will have the iv chemo outpatient on Mondays. It will be a three week cycle with most of the second week and third week with no chemo. She will be able to go to school and not be stuck in a hospital room. We are focusing on the good news of the bad news, if that makes sense. We need to be positive but mostly she needs to normalcy as much as possible. We are in awe over the support everyone has been giving us and all of the prayers. We believe all of the prayers have been part of the news we received today! We cannot thank you enough. We have a long road ahead of us but it is extremely comforting to know the support we have behind us! Hope, Faith and Encouragement!
I can't believe I am writing this... There is suspicion that the Ewings has returned and it is the reason for the vomiting, headache and numbness. There is a mass 2x2x1 that is laying between the skull and brain and looks like it is leaning on an artery.. I have nothing else to say right now but I ask you pray and storm the heavens with prayers of healing..
Next step... Getting admitted.... MRI to rule out any small rumors that may not have been seen on CT scan... Then lumbar puncture to see if there are any cancerous cells within the meninges layer that could be causing inflammation and causing headache.... I have no words... Just heartbroken and scared.... Will update with any news once we get it.
Update: not much news.... We have been in the ER all night. The docs wanted to do a MRI but they had to give her pain meds for her headache and nausea meds for the vomiting. Those meds made her very drowsy and with a MRI they don't want to send a patient who is sedated without a physician to stay with her. They did not have enough docs on staff last night to be able to do that. They decided to do a CT scan in the meanwhile, which has come back negative!!! She is still vomiting and has a bad headache, so no answers as to what this is yet. She has been getting rest with the meds thankfully. I just want to get to the bottom of it and get her better. I want to thank all of you for all of your kind words. I read them over and over last night and it helped me get through the night. My anxiety is overwhelming every time the doctor comes in. Please continue to send prayers that this is something we can treat and get her better! Hope, Faith and Encouragement!
Well she tried.. She dressed up and looked absolutely stunning. Unfortunately we are on our way down to Columbia ER. She wasn't feeling great earlier but she wanted to try to make it through the night. Her left eye is dropping slightly, which is hard to see because the makeup artist, Alaina, did such an awesome job on her make up, and she has had a headache. I got a call from her to be picked up that she is throwing up and the headache is worse. My poor girl can catch a break. I don't know what to think or feel right now. I feel sick yet numb and in disbelief. I am scared to hear what the doctors may say. I hate CANCER. I hate what it does to children, I hate what it does to families, I hate how it haunts you day in and day out, and I hate how it takes away our freedom... Our freedom to just live life without a worry, freedom to go to prom and enjoy the night, the freedom to just be happy.... My girl is strong and I know that but she shouldn't be missing out on tonight. Please pray this is unrelated to CANCER and whatever it is she will heal and get right back to life. HOPE, FAITH AND ENCOURAGEMENT!!
Hope everyone had a wonderful Easter spending time with their loves ones. Since Dariana has come out of the hospital last week she has developed numbness in the right side of her face. We are praying that it is caused by the Reglan medicine the docs gave her for her nausea. It's not a common side effect of Reglan but there are reports from people who have taken it them at they have had facial numbness from Reglan. It has not gotten worse or better since Saturday but it is still there. We followed up with her pediatrician who tested her for Lymes, but that came back negative!. We follow up with her oncologist on Monday and we will see what they recommend at that point. We got some bad news last night that the chemo and radiation has caused Dariana to have ovarian failure, which makes her chances of having kids low. They have referred her to a fertility specialist, which I have called and am waiting for a call back, in hopes they will have some good news in ways to help Dariana in the future when she is ready to start her family. I truly believe if God wants her to have a baby she will have a baby. Plus there are so many other options out there. We are just happy that she beat Ewings Sarcoma and is here with us today living a teenage life. Tomorrow night she is going to Junior Prom and j just want her to forget about all of this and have a great time. I will post pictures. Please pray this numbness is a side effect and we will receive good news Monday. Thank you always for all of your support and prayers!! Hope, Faith and Encouragement!!!
Results of pelvic ultrasound came back.... Unremarkable.. Yay! Last ultrasound she had discovered the tumor so that was a little scarey. Didn't think it would be a big deal until you get in there and it's like crazy how quick you go back to that day... But in a good note all tests came back and looks like she is just having a hard time getting rid of this virus. Her immune system isn't exactly back to where it should be. She is getting discharged and she is ecstatic. Thank you all for your prayers and support! Hope, Faith, and Encouragement!
Update: We are waiting on a pelvic ultrasound and we will be staying another night. Our oncologist is not concerned. She does feel it's just a virus that likes Dariana and doesn't want to leave. If she does well tonight, meaning no vomiting and can keep everything down she may go home tomorrow. Thank you everyone for your concerns and prayers! Xoxoxo Hope, Faith and Encouragement!
Ok... So the blood results came back good, her platelets dropped again which has been happening since the end of treatment. They really never have been back within a normal range. They are not sure why she keeps getting it back. The doctor wants to speak with the pediatrician and the oncologist to see what they are thinking. They are going to keep her overnight and give her fluids and antiemetics with hopes she will feel better. Looking to get a consult with a GI while she is here. Thank you for her prayers. Please continue to pray until we get answers. Hope, Faith and Encouragement!
Well it's a good thing I want to be a nurse because I spend more time in hospitals than I do anywhere else. A simple virus has began to get me very concerned. This is the the 3rd time within 4-5 weeks that she has come down with the virus. At Vassar Hospital for the 2nd time within 2 weeks for fluids. Waiting for a call back from the oncologist to see if I should or should not be concerned. The chemos that she had can cause other types of cancers and of course you always think the worst. Please say a prayer that this is just a virus and nothing else. Hope, Faith and Encouragement!
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Updates from Dariana and Lisa.
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