David has endured a week and a half of testing. Now we are ready to start his treatments.
The good news is that there is no sign of the cancer spreading outside of the eye cavity. There may be indicators that there is some cancer still in the orbit, but we are going to be discussing the MRI results with the doctor tomorrow.
Our plan right now - as far as we know - is to take David to the hospital tomorrow. We will sit down with his oncologists and talk about all the tests, chemo regimen, hospital stays, etc., etc., etc. Once we understand what the oncologist is recommending, we will go right over to the day hospital and start David's treatments. As we understand at this point, David will have chemo for 2 days, but will not have to be hospitalized overnight. We are going to try to avoid the cost and headache of a hospital stay. If we see that David is not tolerating the treatments, we may have to rethink things and schedule the treatments to be in-hospital treatments, but we are hoping that we won't have to do that.
And so the fun begins.
On a different note, we have had our appraisals and inspections on our new house, and everything seems to be a go! We are super excited about moving into a house with more space, but we have appreciated Rob's grandparents' generosity letting us stay here. If you click on David's picture, you should be redirected to our picture site to see pictures of the new house. We feel really blessed to get this house in a great neighborhood and for a really great price!
I'll update you later, but right now, I need to go and finish packing for a whole day at the hospital.
-Kim
Thursday, May 28, 2009
Thursday, May 21, 2009
Today
This has been a very busy week. David has had a plethora of tests and exams. He's been poked and prodded and weighed and measured. He's had his new port put in, and today we get a rest. We go again tomorrow, but the break is very very welcome. It gives me a chance to do some laundry and clean up the house a little. David has been a champ. He's taken everything in stride and still has a big smile for his kids at the end of the day.
We still have an MRI and kidney study to complete before all the initial tests are taken care of. Then we will likely have a sit down with the oncologist to discuss the near future. We still don't know the chemo regimen or when we will be starting.
Earlier in the week, we put an offer on a house and our offer was accepted. It is in the same area as the last house, but in a bigger neighborhood where we already know some people! We still have to do the appraisal and inspection process, but we are hoping that things will work out.
I'll update again soon.
-Kim
We still have an MRI and kidney study to complete before all the initial tests are taken care of. Then we will likely have a sit down with the oncologist to discuss the near future. We still don't know the chemo regimen or when we will be starting.
Earlier in the week, we put an offer on a house and our offer was accepted. It is in the same area as the last house, but in a bigger neighborhood where we already know some people! We still have to do the appraisal and inspection process, but we are hoping that things will work out.
I'll update again soon.
-Kim
Monday, May 18, 2009
This Week
Hi Friends. We are just beginning to get a glimpse of our schedule this week.
Tomorrow - David has an appointment with the eye Doctor to check up on his healing progress from the enucleation. He will then have a sedated EKG followed by an audiogram.
Wednesday - He will have a lumbar puncture, bone marrow study, and they will insert his port-a-cath
Thursday - David will see a Speech and Language Pathologist - I'm not really sure what this is for, but I am trying to find out.
Friday - Will likely be a kidney study (not sure what this entails), and possibly an MRI or CT scan.
So....it will be a busy week. David's oncologist is still meeting and conversing with doctors all over the country, and his pathology slides are being sent for a second opinion as well. I will try to keep you updated as well as I can.
Thanks for caring.
-Kim
Tomorrow - David has an appointment with the eye Doctor to check up on his healing progress from the enucleation. He will then have a sedated EKG followed by an audiogram.
Wednesday - He will have a lumbar puncture, bone marrow study, and they will insert his port-a-cath
Thursday - David will see a Speech and Language Pathologist - I'm not really sure what this is for, but I am trying to find out.
Friday - Will likely be a kidney study (not sure what this entails), and possibly an MRI or CT scan.
So....it will be a busy week. David's oncologist is still meeting and conversing with doctors all over the country, and his pathology slides are being sent for a second opinion as well. I will try to keep you updated as well as I can.
Thanks for caring.
-Kim
Friday, May 15, 2009
Ten Steps Back
So, we had less than 24 hours to revel in our good news.
At about 6pm last night, David's oncologist called to let us know that he needed to see us today to go over some things that were found in a separate pathology report than we had been notified about.
Apparently, our pathologist had recently been at a conference where testing for retinoblastoma had been a topic of interest. It was becoming more and more frequent that children who had been given the "all clear" signal were redeveloping the disease. So, there is a new test that has been shown to point to a new pattern of spread. Our pathologist came back from the conference and retested David's eye for this particular pattern of spread and the test was positive. Now, this does not mean absolutely that David's cancer has spread outside the eye, but it shows high probability. There was no sign of spread down the optic nerve which is very good.
So, it is the consensus of David's team of Doctors that David undergo another round of treatment which will include chemotherapy and possibly radiation and/or surgery. The chemo treatments will include several different drugs than last time, and they will be much more intense, much more frequent, and will last much longer. We don't know the absolute specifics yet, but each heavy treatment will likely involve 2-4 days in the hospital.
Next week will be a slew of tests and prep work, and then the week after that we are hoping to start the chemo.
I can't actually tell you all how we are doing with this news, because I don't really know. I think my brain has mostly shut down. We are coming to learn that medicine is just a series of good guesses, so our best guess at this point is to continue down this road and pray that God's grace has paved the way (which we know it has!). I was hoping to have a big celebration for David's birthday and good report, but I am going to have to rethink things now. Such is life.
We appreciate your continued prayer for our family as we try to make the best possible decisions about David's care and also in finding a home.
David - as always - is just happy and bouncy and has no idea what is coming, but it certainly is fun to see him enjoy life.
I will update with more news later....when I know more news to give
-Kim
At about 6pm last night, David's oncologist called to let us know that he needed to see us today to go over some things that were found in a separate pathology report than we had been notified about.
Apparently, our pathologist had recently been at a conference where testing for retinoblastoma had been a topic of interest. It was becoming more and more frequent that children who had been given the "all clear" signal were redeveloping the disease. So, there is a new test that has been shown to point to a new pattern of spread. Our pathologist came back from the conference and retested David's eye for this particular pattern of spread and the test was positive. Now, this does not mean absolutely that David's cancer has spread outside the eye, but it shows high probability. There was no sign of spread down the optic nerve which is very good.
So, it is the consensus of David's team of Doctors that David undergo another round of treatment which will include chemotherapy and possibly radiation and/or surgery. The chemo treatments will include several different drugs than last time, and they will be much more intense, much more frequent, and will last much longer. We don't know the absolute specifics yet, but each heavy treatment will likely involve 2-4 days in the hospital.
Next week will be a slew of tests and prep work, and then the week after that we are hoping to start the chemo.
I can't actually tell you all how we are doing with this news, because I don't really know. I think my brain has mostly shut down. We are coming to learn that medicine is just a series of good guesses, so our best guess at this point is to continue down this road and pray that God's grace has paved the way (which we know it has!). I was hoping to have a big celebration for David's birthday and good report, but I am going to have to rethink things now. Such is life.
We appreciate your continued prayer for our family as we try to make the best possible decisions about David's care and also in finding a home.
David - as always - is just happy and bouncy and has no idea what is coming, but it certainly is fun to see him enjoy life.
I will update with more news later....when I know more news to give
-Kim
Wednesday, May 13, 2009
Free at Last.....
.... Thank God Almighty!!
Davids pathology reports came back clear. We were just informed, and I wanted to rush to share the good news with you all!
We have been so grateful for all of your prayer and support. Thank you a thousand times over.
This doesn't mean that we are completely out of the woods, but this is the best news possible at this point in time. We will still have to continue to monitor his "good" eye and do MRIs to make sure that there isn't anything developing out of eye-sight.
David has fully recovered from the surgery. He was really recovered the day after :-). We take him back on Tuesday for a check-up and to get a feeling for when he will be able to be fitted for a new eye!
Davids pathology reports came back clear. We were just informed, and I wanted to rush to share the good news with you all!
We have been so grateful for all of your prayer and support. Thank you a thousand times over.
This doesn't mean that we are completely out of the woods, but this is the best news possible at this point in time. We will still have to continue to monitor his "good" eye and do MRIs to make sure that there isn't anything developing out of eye-sight.
David has fully recovered from the surgery. He was really recovered the day after :-). We take him back on Tuesday for a check-up and to get a feeling for when he will be able to be fitted for a new eye!
Tuesday, May 5, 2009
Normal?
Hi Friends,
I wanted to update you on David's progress to date.
He is acting like nothing ever happened! He eats and plays like he always has. He has seen himself in the mirror a few times, and he stares at the eye like he knows something is different, but he really hasn't messed with the eye at all. Over the course of the day yesterday, the swelling in the eye went down dramatically. This morning, the signs of bruising on the eyelid and around the eye look drastically diminished as well. I am really surprised and so pleased at his progress. I have to keep the matter from accumulating and matting his eyelashes together. That is not the most pleasant part of the day, but he seems to tolerate it at a lower volume that I anticipated. I also have to make sure to get ointment into the eye 4 times each day. This task has also been much easier than anticipated - which is great because it would cause a lot more trauma to the eye if I had to fight with him to get the ointment in. Here is what he looked like the day after surgery.
The big kids have taken all these changes in stride. Isaac especially has been very open to ask tons of questions about it, but has seemed satisfied with the answers that we've given him. I think that since David doesn't seem to be in much pain, that helps them both to move on to the next step.
Rob was able to go on his work trip. This is a real blessing to him as this is a busy time of year for him at work, and postponing this trip could have caused a real headache for him. He was willing to postpone the trip, but it is a blessing that he didn't have to do that!
In other news, the deal we made to purchase a house in Clemmons, NC has fallen through. There were some issues with the appraisal and the inspection that have made us feel the need to move on and look for something somewhere else. I was a little disappointed at first, but at the moment, I am feeling some excitement about what is out there for our family! We have felt God's hand leading and protecting so often in the recent years that we are confident that He will lead us to just the right place.
We feel so much gratitude for the gracious care given to us by all of you. We covet your prayers and your notes of courage, comfort, and support. It has been such a boost to us. Thank you all so much!!
-Kim
I wanted to update you on David's progress to date.
He is acting like nothing ever happened! He eats and plays like he always has. He has seen himself in the mirror a few times, and he stares at the eye like he knows something is different, but he really hasn't messed with the eye at all. Over the course of the day yesterday, the swelling in the eye went down dramatically. This morning, the signs of bruising on the eyelid and around the eye look drastically diminished as well. I am really surprised and so pleased at his progress. I have to keep the matter from accumulating and matting his eyelashes together. That is not the most pleasant part of the day, but he seems to tolerate it at a lower volume that I anticipated. I also have to make sure to get ointment into the eye 4 times each day. This task has also been much easier than anticipated - which is great because it would cause a lot more trauma to the eye if I had to fight with him to get the ointment in. Here is what he looked like the day after surgery.
The big kids have taken all these changes in stride. Isaac especially has been very open to ask tons of questions about it, but has seemed satisfied with the answers that we've given him. I think that since David doesn't seem to be in much pain, that helps them both to move on to the next step.
Rob was able to go on his work trip. This is a real blessing to him as this is a busy time of year for him at work, and postponing this trip could have caused a real headache for him. He was willing to postpone the trip, but it is a blessing that he didn't have to do that!
In other news, the deal we made to purchase a house in Clemmons, NC has fallen through. There were some issues with the appraisal and the inspection that have made us feel the need to move on and look for something somewhere else. I was a little disappointed at first, but at the moment, I am feeling some excitement about what is out there for our family! We have felt God's hand leading and protecting so often in the recent years that we are confident that He will lead us to just the right place.
We feel so much gratitude for the gracious care given to us by all of you. We covet your prayers and your notes of courage, comfort, and support. It has been such a boost to us. Thank you all so much!!
-Kim
Monday, May 4, 2009
It's Done!
Hi Dear Ones,
We just got back from the hospital about 45 minutes ago. David's surgery went really well. The surgeon seemed to be pleased that everything went smoothly.
David has one whole side of his face bandaged up, but he seems to be doing really well for now. He has mostly been sleeping since the surgery with just a few mild whiny interludes. Overall, it has been much better than I thought. They gave him some nice strong pain meds to get him through the rest of the day, so that might be what is making it so easy right now, but I won't complain :-).
We will take him back to see the Doc. in the office in the morning. We will be getting a tutorial of how to care for the eye while it heals, and that is when we will have a much more relaxed chance to ask all the questions that we have. We're hoping that he will be able to give us a time frame on when the test results on the surrounding tissues should be back.
I will update you again soon. My brain is a little boggy right now, so I don't want to write to much until I am sure that it will make sense. Thank you all for all your prayer! We felt exceptionally peaceful today.
-Kim
We just got back from the hospital about 45 minutes ago. David's surgery went really well. The surgeon seemed to be pleased that everything went smoothly.
David has one whole side of his face bandaged up, but he seems to be doing really well for now. He has mostly been sleeping since the surgery with just a few mild whiny interludes. Overall, it has been much better than I thought. They gave him some nice strong pain meds to get him through the rest of the day, so that might be what is making it so easy right now, but I won't complain :-).
We will take him back to see the Doc. in the office in the morning. We will be getting a tutorial of how to care for the eye while it heals, and that is when we will have a much more relaxed chance to ask all the questions that we have. We're hoping that he will be able to give us a time frame on when the test results on the surrounding tissues should be back.
I will update you again soon. My brain is a little boggy right now, so I don't want to write to much until I am sure that it will make sense. Thank you all for all your prayer! We felt exceptionally peaceful today.
-Kim
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