The good news-yesterday we were able to finish all of Jared's pretrial testing done in two visits at UCLA. He went back to school today. The not so good news-because the biopsy results were not completed, he could not begin the medicine. So, that means that we have to get him back from school in the next two weeks or all the pretrial testing is invalid. After he begins the new medicine, he has to return to UCLA every two weeks, for the first 12 weeks of the trial. He is the only candidate in the UCLA study, others around the country, but since Basal Cell Nevis syndrome is so rare, about 900-1,000 cases nationwide, the studies don't come up very often. We are not sure whether to try and do this, or wait until summer. But after graduation, Jared wants to get a job in the Monterey area. So, not sure if that would be any better. We need prayer on this one.
This round of chemo has hit Dwayne hard. Along with the fatigue and nausea, he is experiencing fevers in the morning, headaches and body aches. Yesterday was the last dose of this round, Yea!!! He will have an MRI in a couple of weeks. We don't have a date yet.
Saturday, January 21, 2012
Tuesday, January 17, 2012
Normal is just a setting on the dryer!
Well, the year has gotten of to a quick start. Life is just not slowing down.
Dwayne began his 6th round of chemo yesterday and will continue it for this week. He's tried. but doing well otherwise. The first week of February he will have his next MRI. Praying that this will remain the same as the one in November-no cancer!! He was released from physical therapy last week. Possibly speech the end of the month.
I had thought we were in our new "normal" of a routine. I don't think the Roberts do "normal". Jared's dermatologist at UCLA thought he might qualify for a drug trial for the basal cell nevis syndrome he has. Yes, another very rare condition-less than 1,000 documented cases. So, we have had two trips up there for pre-trial testing. Hopefully, only one more this week, maybe two. They are trying to get everything fit in before he goes back to school on Saturday, for his last semester! We thought we knew where we were going the first visit. Found out there are two different departments of oncology at UCLA-the neuro-oncologists in one building that Dwayne sees, and an entirely different building where a whole floor of offices are devoted to cancers that are not in the brain. Sometimes I am a bit overwhelmed at that place, but grateful we have such good people caring for them.
We have decided that Roberts in the original Saxon must have meant "unusual medical conditions"
Thank you again for your prayers and support. There is still more to this journey.
Dwayne began his 6th round of chemo yesterday and will continue it for this week. He's tried. but doing well otherwise. The first week of February he will have his next MRI. Praying that this will remain the same as the one in November-no cancer!! He was released from physical therapy last week. Possibly speech the end of the month.
I had thought we were in our new "normal" of a routine. I don't think the Roberts do "normal". Jared's dermatologist at UCLA thought he might qualify for a drug trial for the basal cell nevis syndrome he has. Yes, another very rare condition-less than 1,000 documented cases. So, we have had two trips up there for pre-trial testing. Hopefully, only one more this week, maybe two. They are trying to get everything fit in before he goes back to school on Saturday, for his last semester! We thought we knew where we were going the first visit. Found out there are two different departments of oncology at UCLA-the neuro-oncologists in one building that Dwayne sees, and an entirely different building where a whole floor of offices are devoted to cancers that are not in the brain. Sometimes I am a bit overwhelmed at that place, but grateful we have such good people caring for them.
We have decided that Roberts in the original Saxon must have meant "unusual medical conditions"
Thank you again for your prayers and support. There is still more to this journey.
Sunday, January 1, 2012
Happy New Year!
December was wonderful celebration of our savior and spending time with family and friends.
Jared is home for the month and then will go back for his final semester in Monterey. Hopefully, a job will follow soon. We stretched out Christmas celebration though out the week. Finishing yesterday with family coming from Burbank and San Diego. Great day, lots of fun and laughs. Overall I think something that we have learned over the past year is to take time to enjoy the small moments. Some of our best times this year have been taking walks along the beach, watching the rabbits eat our backyard-they are cute, but boy can they make a mess of a yard, enjoying a cup of tea with a fire in the fireplace. One thing we have enjoy more than ever is the chats, meals and time with friends and family.
This past Friday Dwayne and Jared took a walk in the hills behind our house. This was a major accomplishment for Dwayne, he said it felt so good to put on his hiking boots! Six months ago he was not walking around the house without a cane. We are grateful for the progress. He finished his 5th round of chemo last week and continues to do speech and physical therapy twice a week at Mission.
Jared is home for the month and then will go back for his final semester in Monterey. Hopefully, a job will follow soon. We stretched out Christmas celebration though out the week. Finishing yesterday with family coming from Burbank and San Diego. Great day, lots of fun and laughs. Overall I think something that we have learned over the past year is to take time to enjoy the small moments. Some of our best times this year have been taking walks along the beach, watching the rabbits eat our backyard-they are cute, but boy can they make a mess of a yard, enjoying a cup of tea with a fire in the fireplace. One thing we have enjoy more than ever is the chats, meals and time with friends and family.
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| Nathan and Jared got Legos for Christmas |
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| This brought back some memories! |
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| Cindy and Rebekah |
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| Tim and Rachel |
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| Diana and Paul Missed you, Joel and Bethany |
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| The cookie decorating was very entertaining |
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| My three guys! |
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| The view from the hills behind our house |
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| Dwayne and Jared |
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| A very happy new year from the Roberts |
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