Then we come to today, after 13 months.....
He got his drivers license reinstated today !!!
This was a huge step for him. I'm so proud of him!
Now, where do I go to turn in my chauffeurs license?
Monday, April 23, 2012
Big Step-today!!!
This year has been a year of small steps. When Dwayne first came home from the rehab unit last May. It was like having a toddler in some ways, he could not be left alone, reasoning skills were not always the best.. Mid-summer, he could be left alone for short periods of time, was reasonably good about getting his homework done for rehab, fix a simple meal for himself, things you could expect from a older elementary student. Since the fall, I could go for the morning to teach, leave him with a list of things to do around the house and he was pretty good about getting them done. So, we're talking middle schooler.
Monday, March 26, 2012
One Year
Dear Family and Friends,
In some ways it does not seem possible that it was a year ago today that an MRI had Dwayne in the ICU at our local hospital two hours after it was done. In others, it was a lifetime ago.
We have learned a lot this past year about ourselves, the people around us and God. When I look at where he was six months ago, there has been so much progress. But still a ways to go. Overall, we have adjusted to our new "normal". I am learning to let my plans go easier than I used to, to be more spontaneous and go for a walk, enjoy a sunset, and we have found that the birds, rabbits and lizards are quite entertaining to watch in the back yard. Dwayne is learning not to be so hard on himself when he can't do something the first time he tries. This was tough, because he has always been able to do most anything he puts his mind to. Nathan and Jared have been a great help to us. They have surprised us with their strengths and how they have used them. We have found that humor to be a great gift, because sometimes all you can do is laugh at the situation. My dear friend, Kathy sent my the book, 1000 Gifts last summer. Have tried to keep the "gift" in mind in our day-to-day life.
Most of all we have seen how God has been faithful and met our needs, many times even before we knew the need was.
We appreciate your prayers and concern for our family this year. Thanks so much!
In some ways it does not seem possible that it was a year ago today that an MRI had Dwayne in the ICU at our local hospital two hours after it was done. In others, it was a lifetime ago.
We have learned a lot this past year about ourselves, the people around us and God. When I look at where he was six months ago, there has been so much progress. But still a ways to go. Overall, we have adjusted to our new "normal". I am learning to let my plans go easier than I used to, to be more spontaneous and go for a walk, enjoy a sunset, and we have found that the birds, rabbits and lizards are quite entertaining to watch in the back yard. Dwayne is learning not to be so hard on himself when he can't do something the first time he tries. This was tough, because he has always been able to do most anything he puts his mind to. Nathan and Jared have been a great help to us. They have surprised us with their strengths and how they have used them. We have found that humor to be a great gift, because sometimes all you can do is laugh at the situation. My dear friend, Kathy sent my the book, 1000 Gifts last summer. Have tried to keep the "gift" in mind in our day-to-day life.
Most of all we have seen how God has been faithful and met our needs, many times even before we knew the need was.
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| March 26, 2012 |
Sunday, March 11, 2012
Life!
We have managed to pack quite a bit into the past few weeks.
Dwayne's MRI came back clear incase you missed that post! He saw the neurologist and he did the paperwork for Dwayne to be retested by the DMV. That will happen mid-April. He will have his eighth round of chemo this week.
Jared has now had four visits to UCLA. Last week when they took pictures, they couldn't even find some of the skin cancers that they photographed a month ago. Huge praise, the meds are working!
Since Jared is coming home every two weeks, he ended up being here for his birthday! We had a nice dinner and evening with friends.
Dwayne's MRI came back clear incase you missed that post! He saw the neurologist and he did the paperwork for Dwayne to be retested by the DMV. That will happen mid-April. He will have his eighth round of chemo this week.
Jared has now had four visits to UCLA. Last week when they took pictures, they couldn't even find some of the skin cancers that they photographed a month ago. Huge praise, the meds are working!
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| Happy 25th Birthday, Jared! |
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| A special thank you to Judy Allen for all her care for Jared through the years! I still remember the conversation we had when he was 5, and was he ready to start school. Amazing to think he will graduate from college in May! Thanks for your long friendship. You have been a blessing to our family. |
Since Jared is coming home every two weeks, he ended up being here for his birthday! We had a nice dinner and evening with friends.
Wednesday, February 22, 2012
Sunday, February 19, 2012
Update
It does not seem like it has been a month since I last updated this, but I guess it has. Too much going on!
Jared has made two trips from school to UCLA and he seems to be tolerating the medicine reasonably well. We are learning our way around LAX and a new area of UCLA.
Dwayne finished up his 7th round of chemo on Friday. A bit achey, but not as much as last round, no fevers this time. He was released from physical therapy the end of January. Speech will be ending on the 27th of this month. His aphasia is better for the most part-still a goofy word here and there, but a huge improvement from six months ago.
Two big appointments are coming up - the first is tomorrow the 20th, he will have another MRI. The second is March 2nd. Dwayne has a neurologist appointment. The doctor will look over all his scans for the past year and determine if he is ready to drive again.
So, our two requests would be no changes in the MRI since November, and for wisdom for the neurologist.
Jared has made two trips from school to UCLA and he seems to be tolerating the medicine reasonably well. We are learning our way around LAX and a new area of UCLA.
Dwayne finished up his 7th round of chemo on Friday. A bit achey, but not as much as last round, no fevers this time. He was released from physical therapy the end of January. Speech will be ending on the 27th of this month. His aphasia is better for the most part-still a goofy word here and there, but a huge improvement from six months ago.
Two big appointments are coming up - the first is tomorrow the 20th, he will have another MRI. The second is March 2nd. Dwayne has a neurologist appointment. The doctor will look over all his scans for the past year and determine if he is ready to drive again.
So, our two requests would be no changes in the MRI since November, and for wisdom for the neurologist.
Saturday, January 21, 2012
A Crazy Week!
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.
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.
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.
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