Hi all, hope everyone is doing well. Haven't had a chance to post a recent update, so here's the latest.
Sierra had her urology appointment last week, and then had an ultrasound a few days later. The original MRI that was done in Oakland showed there was blood flowing through the lesion on her kidney, which meant another tumor. Ultrasound was sketchy, so they weren't sure what it was exactly. The follow up ultrasound showed it to be a cyst. Urologist says she's too young to be having kidney cysts, but for now, we're thankful that it's not another tumor. We'll deal with any issues that come from having cysts this young later.
Yesterday, she had an oncology and neurosurgery appointment in Oakland. The oncology appointment went well and was a positive experience, considering. Dr. Hastings agrees, that for now, we should continue watching those left over tumor cells, and hold off on chemo and radiation. She feels that enough of the tumor was removed that it could be a long while before there are changes or regrowth. She also said that Sierra didn't have a particular gene make up that predisposes these tumors to grow and mutate rapidly. Neurosurgery just checked her incision...all is well there.
Last week was hell for Sierra. She was not doing well, at all. Debilitating headaches and dizziness that left her in bed most of the day...every day.
The last three days have been a little better...shorter episodes of dizziness and pain, and she's able to get up and function. So thankful for these okay moments.
Thank you for the continued prayers and support. They help carry us through some of these darkest moments.
Saturday, April 25, 2015
Thursday, April 16, 2015
Tough day.
The hospital mailed the last MRI disk to us, which came today.
We've known for a few weeks now that Sierra's tumor was cancerous. I've written about it. I've talked about it. I've researched it. But I don't think it fully hit till we read the printed out report that was in the disk envelope. Maybe we were in denial...I don't know.
MALIGNANT NEOPLASM OF THE BRAIN. ASTROCYTOMA.
I know this probably seems weird, but reading this felt like strong kicks to the gut and heart as we read those words. Our walls, our strength, our hope, our very foundation suddenly feel shaken and unsteady, crushed under the weight of those first five words. I know this info doesn't change the outlook, or change the course of treatment, or change anything other than the fact that suddenly this new reality feels very, overwhelmingly real. Where we have felt strength and confidence, there is much more fear and uncertainty.
I hate cancer. I hate it. I hate it. I HATE it. In all it's forms. I especially hate the one that is taking up residence in my daughter.
Sierra is still struggling quite a bit. Yesterday was awful for her. Dizziness that left her stumbling around, holding onto the walls and furniture just to get across the room. Her face has been numb for the past week. Overall, the majority of the days have been a challenge lately. The moments where she feels 'okay', have been far and few in between. We try and remember that she's only five weeks out of major brain surgery. But it's hard to see her struggle, and to be helpless to make it better.
More meds were added to her list today to hopefully help with the dizziness, and possible seizures.
Tomorrow (Friday) she sees the urologist. Tomorrow she has physical therapy as well. Next Friday, we go back to Oakland to see the oncologist and Neurosurgeon and his crew.
Please continue to pray for her. Pray for the dizziness, numbness, and headaches to lessen, or go away. Pray that the lesion on her kidney has either gone away or hasn't changed at tomorrows appointment. Pray for her strength, her physical, emotional and mental health. And pray for our other babies, who are struggling with it all. Pray for Ken and I as we soak in this reality....that even though we've known, and this paper doesn't change a thing, that we can refocus, and continue to make the right decisions regarding Sierra and her care as best as we can.
Thanks.
We've known for a few weeks now that Sierra's tumor was cancerous. I've written about it. I've talked about it. I've researched it. But I don't think it fully hit till we read the printed out report that was in the disk envelope. Maybe we were in denial...I don't know.
MALIGNANT NEOPLASM OF THE BRAIN. ASTROCYTOMA.
I know this probably seems weird, but reading this felt like strong kicks to the gut and heart as we read those words. Our walls, our strength, our hope, our very foundation suddenly feel shaken and unsteady, crushed under the weight of those first five words. I know this info doesn't change the outlook, or change the course of treatment, or change anything other than the fact that suddenly this new reality feels very, overwhelmingly real. Where we have felt strength and confidence, there is much more fear and uncertainty.
I hate cancer. I hate it. I hate it. I HATE it. In all it's forms. I especially hate the one that is taking up residence in my daughter.
Sierra is still struggling quite a bit. Yesterday was awful for her. Dizziness that left her stumbling around, holding onto the walls and furniture just to get across the room. Her face has been numb for the past week. Overall, the majority of the days have been a challenge lately. The moments where she feels 'okay', have been far and few in between. We try and remember that she's only five weeks out of major brain surgery. But it's hard to see her struggle, and to be helpless to make it better.
More meds were added to her list today to hopefully help with the dizziness, and possible seizures.
Tomorrow (Friday) she sees the urologist. Tomorrow she has physical therapy as well. Next Friday, we go back to Oakland to see the oncologist and Neurosurgeon and his crew.
Please continue to pray for her. Pray for the dizziness, numbness, and headaches to lessen, or go away. Pray that the lesion on her kidney has either gone away or hasn't changed at tomorrows appointment. Pray for her strength, her physical, emotional and mental health. And pray for our other babies, who are struggling with it all. Pray for Ken and I as we soak in this reality....that even though we've known, and this paper doesn't change a thing, that we can refocus, and continue to make the right decisions regarding Sierra and her care as best as we can.
Thanks.
Monday, April 13, 2015
Neurosurgeon appointment
Sierra had her appointment with the neurosurgeon today. Her incision is healing nicely.
We went over the latest MRI results.
That big, white bright spot on the two bottom pictures is where the tumor was. There are still some small tumor cells visible, but right now, they are stable.
There are a couple little tumors also noted, but they appear to be benign and unrelated to the glioma. One of the tumors is the original pituitary tumor. The second was just a little further back in hypothalamus. They will just continue to monitor them along with all the other monitoring.
The symptoms she's been experiencing are likely to be seizures and/or a migraine disorder. All things the neurologist should be able to tell us. Seizures are one of the main things we were warned about after surgery.
For now, the next steps are to see the urologist on Friday, the neurologist on May 4th, the neuro oncologist and neurosurgery team in Oakland. We are to continue the frequent MRI's, add anti seizure meds, and possibly migraine meds if needed, continued physical, speech and occupational therapies.
On Saturday, our friends and several people from the community hosted an amazing fundraiser event. We were overwhelmed by the amount of love that was shown to Sierra and our family. This community is truly amazing.
Heading into another MRI
Watching a band of wild horses.
All the people/businesses in the community who helped with the fundraiser.
Ken made his annual lei to release to Arianna for the day she died.
Saturday, April 4, 2015
Busy week.
This has been a pretty hard week for Sierra. A lot of bad headaches, some dizziness, leg numbness, a lot of bloody noses. Yesterday and today have been a little better.
Monday she has physical therapy. We'll also get an appointment date with the neurologist that day. Three studies will be done, plus the evaluation by the doctor, so we're expected to be there most the day. Oncology and neurosurgery are working to get her scheduled back in Oakland as well. Urology appointment is on the 17th. Occupational and speech therapy still need to be worked into the schedule.
Tomorrow is April 5. And Easter. In 2008, Easter was the one holiday we had with our sweet Arianna. We spent it in the NICU, and brought her little Easter dress to the unit. (Which was a doll dress that came with the girls Easter dresses). She came home from the hospital the next day, and passed away on the 5th of April that year. This year, they fall on the same day. Seven years have gone by since we experienced the worst day of our lives, 7 years we've been living without our child. This year, we're trying to maneuver our way through a new cancer diagnoses in another one of our children, and feeling the sting and memories of Ari's death that seem to rise to new levels around this time of year, and the days are feeling pretty paralyzing at times. It just feels to be too much at times. But we are determined, and somehow, not with our own strength, will get through it like we always have. Just pray for us!
On another note, last week we decided to get away for a bit, and went to California. We took a whale watching tour, and seen dozens of dolphins and about 12 humpback whales. The experience was amazing, and all the kids had smiles on their faces almost the entire time. Including Sierra. The next day we spent on the beach in San Francisco while the kids played in the sand, chased the waves, found sand dollars, crabs and those little sand crabs that the boys love to catch. It was a great get away, and so, so needed!
Sierra also did another interview for the Record Courier. She was so brave sitting with the reporter and telling her story, her fears, her pain and her goals. I let her lead the conversation and talk about whatever she was comfortable sharing, and she did amazing.
My doula classes are supposed to start on Monday. I'm going to try and attend this semester, but I'm worried about being able to keep up....both with time and the emotional part.
For the locals: One of Sierra's best friend's family is hosting a fundraiser at The Moose and Squirrel and The Grill Next Door here in Gardnerville. It's on the 11th at 2:00, and will be raffles, bbq dinner, and more. We will be there, and would love to have you out.
Lots going on. Please just keep praying for Sierra, for the kids, for Ken and I to have the strength and endurance to keep doing what we need to do. For us to be patient with each other, with the kids, with the medical staff. For better days for Sierra. For less pain, less headaches. For continued healing, and for clean scans.
Thanks for all the love, prayers and support.
Monday she has physical therapy. We'll also get an appointment date with the neurologist that day. Three studies will be done, plus the evaluation by the doctor, so we're expected to be there most the day. Oncology and neurosurgery are working to get her scheduled back in Oakland as well. Urology appointment is on the 17th. Occupational and speech therapy still need to be worked into the schedule.
Tomorrow is April 5. And Easter. In 2008, Easter was the one holiday we had with our sweet Arianna. We spent it in the NICU, and brought her little Easter dress to the unit. (Which was a doll dress that came with the girls Easter dresses). She came home from the hospital the next day, and passed away on the 5th of April that year. This year, they fall on the same day. Seven years have gone by since we experienced the worst day of our lives, 7 years we've been living without our child. This year, we're trying to maneuver our way through a new cancer diagnoses in another one of our children, and feeling the sting and memories of Ari's death that seem to rise to new levels around this time of year, and the days are feeling pretty paralyzing at times. It just feels to be too much at times. But we are determined, and somehow, not with our own strength, will get through it like we always have. Just pray for us!
Precious Arianna in her Easter dress. 2008
On another note, last week we decided to get away for a bit, and went to California. We took a whale watching tour, and seen dozens of dolphins and about 12 humpback whales. The experience was amazing, and all the kids had smiles on their faces almost the entire time. Including Sierra. The next day we spent on the beach in San Francisco while the kids played in the sand, chased the waves, found sand dollars, crabs and those little sand crabs that the boys love to catch. It was a great get away, and so, so needed!
Sierra also did another interview for the Record Courier. She was so brave sitting with the reporter and telling her story, her fears, her pain and her goals. I let her lead the conversation and talk about whatever she was comfortable sharing, and she did amazing.
My doula classes are supposed to start on Monday. I'm going to try and attend this semester, but I'm worried about being able to keep up....both with time and the emotional part.
For the locals: One of Sierra's best friend's family is hosting a fundraiser at The Moose and Squirrel and The Grill Next Door here in Gardnerville. It's on the 11th at 2:00, and will be raffles, bbq dinner, and more. We will be there, and would love to have you out.
Lots going on. Please just keep praying for Sierra, for the kids, for Ken and I to have the strength and endurance to keep doing what we need to do. For us to be patient with each other, with the kids, with the medical staff. For better days for Sierra. For less pain, less headaches. For continued healing, and for clean scans.
Thanks for all the love, prayers and support.
Sierra's most recent interview with the Record Courier
Some of Makenley's one year pictures.....
Subscribe to:
Posts (Atom)