Hi Everyone,
We are home after our first full week of radiation. David has done very well this week, but is also extremely tired out.
He started this journey out being very frightened by every task at the radiation clinic, but has ended being pretty whimpery. I feel like this is a huge improvement. The radiation seems to be making him very very tired, and since we have to access his port daily, his poor little self is feeling pretty bruised. His skin is also raw from the bandages and dressings, so we are happy to have 2 days of rest before we have to do it all over again.
We are home for the weekend in Clemmons. David and I spent the week with Rob's parents in Greensboro which was really nice. Rob had some training that we decided it was important for him to be at, so his cousin Christin and his Dad accompanied me to the hospital 3 days this week. David loves them both and was happy to have them with us, and it was really great that I didn't have to be alone. Christin is going to come with me a few days each of the remaining weeks so that Rob won't fall behind at work. She is a delight to have with me, and we are so grateful that she is available!
Well, I have a ton of work to do at the house over the next few days, and I had better get started.
-Kim
Friday, July 31, 2009
Friday, July 24, 2009
3 Days Down
Hi Everyone,
We are done with our first 3 days of radiation. It hasn't been without a hitch, but I suppose it could have been worse.
David is starting to show extreme anxiety whenever we take him to the hospital, and that is only multiplied when we have to take him on a daily basis. So, this makes each visit emotionally difficult for Rob and I since we have to force him to do things and have things done to him that make him petrified. We are talking with the doctors, nurses, and social workers to find out some ways that we can make the whole process a little easier for him to handle.
We have also had some difficulty figuring out the best way to access David's port each day at the same time that we are trying to find out ways to make things less traumatic. It is a challenge, and I must say that I am feeling the emotional effects of this quite a bit. The newest plan is that we will just have to access his port each day and hope that we can help him to handle it.
They also told us today that we are scheduled for 23 total days of radiation. We were under the impression that we would have 15 days total. So it means the road is a little longer than we expected at first, and that realization always messes with your mental toughness. It will also mean that there will be no time between the end of David's radiation and the start of school for the big kids. So, we are digesting that news and trying to make plans accordingly.
Rob's work is being great about letting him go with me to each of these appointments if he wants, and we are so grateful for that. But, this means that he will also be working late into the night each night and sometimes on the weekends. We will probably try to work out a few times that someone else can come with me to David's treatments so that Rob can get a good day of work in, but we are so thankful that he's been given the freedom at work to do what we feel is best for David.
The big kids are having fun traveling around visiting grandparents. They are with my dad and mom this week. They will be going to the beach with Rob's grandparents next week, at my parents' again the week following, and then I'm going to keep them home with me for the last week of David's treatments. It may mean that they have to come with me to the hospital a few times, but it might be good for them to see what David is going through on a small scale. It might help them have a better grasp of what is going on when Daddy and Mommy take David to the doctor.
So...I don't know how often I will get to update you all over the next few weeks. We are doing a ton of traveling back and forth and then I am brain-dead the rest of the day. But, we covet your prayers for us during this time.
Thanks so much!
-Kim
We are done with our first 3 days of radiation. It hasn't been without a hitch, but I suppose it could have been worse.
David is starting to show extreme anxiety whenever we take him to the hospital, and that is only multiplied when we have to take him on a daily basis. So, this makes each visit emotionally difficult for Rob and I since we have to force him to do things and have things done to him that make him petrified. We are talking with the doctors, nurses, and social workers to find out some ways that we can make the whole process a little easier for him to handle.
We have also had some difficulty figuring out the best way to access David's port each day at the same time that we are trying to find out ways to make things less traumatic. It is a challenge, and I must say that I am feeling the emotional effects of this quite a bit. The newest plan is that we will just have to access his port each day and hope that we can help him to handle it.
They also told us today that we are scheduled for 23 total days of radiation. We were under the impression that we would have 15 days total. So it means the road is a little longer than we expected at first, and that realization always messes with your mental toughness. It will also mean that there will be no time between the end of David's radiation and the start of school for the big kids. So, we are digesting that news and trying to make plans accordingly.
Rob's work is being great about letting him go with me to each of these appointments if he wants, and we are so grateful for that. But, this means that he will also be working late into the night each night and sometimes on the weekends. We will probably try to work out a few times that someone else can come with me to David's treatments so that Rob can get a good day of work in, but we are so thankful that he's been given the freedom at work to do what we feel is best for David.
The big kids are having fun traveling around visiting grandparents. They are with my dad and mom this week. They will be going to the beach with Rob's grandparents next week, at my parents' again the week following, and then I'm going to keep them home with me for the last week of David's treatments. It may mean that they have to come with me to the hospital a few times, but it might be good for them to see what David is going through on a small scale. It might help them have a better grasp of what is going on when Daddy and Mommy take David to the doctor.
So...I don't know how often I will get to update you all over the next few weeks. We are doing a ton of traveling back and forth and then I am brain-dead the rest of the day. But, we covet your prayers for us during this time.
Thanks so much!
-Kim
Monday, July 13, 2009
Radiant
David has been doing very well. He had a rough several days right after we got home from chemo, but not too bad all told. He is doing much better. His appetite has been steadily improving, his naps are returning to normal, and his general fussiness is subsiding. I think we are nearly out of the woods for this round of chemo!
That being said, I am taking him to Duke tomorrow (Tues) for a preop appointment. Then on Wednesday, we are taking him over for his mapping session at radiology. During this appointment, they will be making him a radiation mask (something that will keep his head still while the radiation is running), and they will be doing many scans of his head to make sure that they calibrate the machines correctly and get the radiation where they want it to go. He will be asleep for all of this, thankfully.
We begin his radiation treatments on July 22. He will get daily treatments Monday - Friday, and we will get the weekends to catch our breath. I was surprised that they were going to start these treatments so soon, but I am thankful since we should be done with radiation in time for the big kids to start school. I don't know when his next chemo appointment will be, but I have a feeling that it won't be long after the radiation ends.
We are all enjoying our new house. It is great for the kids to get used to our new place before school starts. The neighborhood is extraordinarily friendly! The kids love the yard and the amount of space that we have inside. We are all loving that Rob is only about 15 minutes from work. There has been a doe and her twin babies staying our back yard. The kids love to see that. We also have several chipmunks and a red-headed woodpecker and his mate who have a nest in one of the closer trees to the house! The kids are loving the wildlife. They get super excited each time they get to watch a robin pull up a worm or when the squirrels sit on the little fence to eat their hickory nuts. It is a great place for us!
-Kim
That being said, I am taking him to Duke tomorrow (Tues) for a preop appointment. Then on Wednesday, we are taking him over for his mapping session at radiology. During this appointment, they will be making him a radiation mask (something that will keep his head still while the radiation is running), and they will be doing many scans of his head to make sure that they calibrate the machines correctly and get the radiation where they want it to go. He will be asleep for all of this, thankfully.
We begin his radiation treatments on July 22. He will get daily treatments Monday - Friday, and we will get the weekends to catch our breath. I was surprised that they were going to start these treatments so soon, but I am thankful since we should be done with radiation in time for the big kids to start school. I don't know when his next chemo appointment will be, but I have a feeling that it won't be long after the radiation ends.
We are all enjoying our new house. It is great for the kids to get used to our new place before school starts. The neighborhood is extraordinarily friendly! The kids love the yard and the amount of space that we have inside. We are all loving that Rob is only about 15 minutes from work. There has been a doe and her twin babies staying our back yard. The kids love to see that. We also have several chipmunks and a red-headed woodpecker and his mate who have a nest in one of the closer trees to the house! The kids are loving the wildlife. They get super excited each time they get to watch a robin pull up a worm or when the squirrels sit on the little fence to eat their hickory nuts. It is a great place for us!
-Kim
Saturday, July 4, 2009
Two
Happy Independence Day! I hope you all had a wonderful day today wherever you may be in the world.
We are home from David's second round of chemo. Things didn't go as smoothly as planned, but we made it through and can cross this one off the list.
We arrived at the hospital on Thursday around noon, but didn't get to our hospital room until nearly 5pm. That seems to be the magical time for us. Even though our chemo meds were ready when we got there, we were not able to start. The doctors wanted some emergency medications to be in hand since David had such a scary reaction last time, and it took several more hours for those medications to arrive from the pharmacy. Then...the nurses were changing shifts, so we had to wait awhile longer. It was about 9:30pm when we were finally able to start.
David was about 40 minutes into his second medication when he began to have another reaction. It was similar to the reaction that he'd had last time, but milder and much slower progressing. They again stopped his chemo with about 7 minutes remaining in his infusion, gave him benadryl, and we waited. Rob talked to several of the higher up docs on the phone and it was decided to continue with the next medication. The meds are really designed to work in conjunction with each other, so it was important for him to get the next medication if at all possible. Needless to say, we were all very nervous and shaky. We started the third medicine around 12:30am and finished around 1:30am with no problems. David slept peacefully during the night, but Rob and I slept very fitfully.
Then next morning, we talked at length with two of the head docs, and we couldn't determine why David had this second reaction. It was to a different medication than last time, and it was very strange in timing. So, they recommended that we go ahead and run the chemo as prescribed for that day, but give David benadryl before anything started. We weren't able to start chemo until around 4pm, so the rest of the day was very nerve wracking for Rob and I. Our favorite nurse was there yesterday and she ran his chemo and just stayed in the room with us for the whole 2 hours with emergency medication on hand. It was uneventful, and for that we praise God. We were able to leave around 7:30pm, and made it as far as Rob's grandparent's house in Greensboro where we just crashed for the night. Rob, David, and I slept until after 10am this morning. I haven't done that in years, but it was a nice rest.
David has been happy and normal today. He is paler than his normal self, but that is to be expected. What is left of his hair is falling out in gobs right now, and I feel like he'll be 100% bald before we go back for another treatment.
After David's counts recover, we'll be headed over to radiology for a mapping session. Then we will start 3-4 weeks of radiation treatments. The treatments will be daily treatments Monday through Friday each week. This is the part that I am most nervous about since the side effects are quite scary. I am praying that God will calm us and keep David still during treatments so that the radiation will only hit where it's supposed to. I'll let you all know when that is about to begin.
Thanks again for all your prayers. We feel the need for them more and more each time we go.
-Kim
We are home from David's second round of chemo. Things didn't go as smoothly as planned, but we made it through and can cross this one off the list.
We arrived at the hospital on Thursday around noon, but didn't get to our hospital room until nearly 5pm. That seems to be the magical time for us. Even though our chemo meds were ready when we got there, we were not able to start. The doctors wanted some emergency medications to be in hand since David had such a scary reaction last time, and it took several more hours for those medications to arrive from the pharmacy. Then...the nurses were changing shifts, so we had to wait awhile longer. It was about 9:30pm when we were finally able to start.
David was about 40 minutes into his second medication when he began to have another reaction. It was similar to the reaction that he'd had last time, but milder and much slower progressing. They again stopped his chemo with about 7 minutes remaining in his infusion, gave him benadryl, and we waited. Rob talked to several of the higher up docs on the phone and it was decided to continue with the next medication. The meds are really designed to work in conjunction with each other, so it was important for him to get the next medication if at all possible. Needless to say, we were all very nervous and shaky. We started the third medicine around 12:30am and finished around 1:30am with no problems. David slept peacefully during the night, but Rob and I slept very fitfully.
Then next morning, we talked at length with two of the head docs, and we couldn't determine why David had this second reaction. It was to a different medication than last time, and it was very strange in timing. So, they recommended that we go ahead and run the chemo as prescribed for that day, but give David benadryl before anything started. We weren't able to start chemo until around 4pm, so the rest of the day was very nerve wracking for Rob and I. Our favorite nurse was there yesterday and she ran his chemo and just stayed in the room with us for the whole 2 hours with emergency medication on hand. It was uneventful, and for that we praise God. We were able to leave around 7:30pm, and made it as far as Rob's grandparent's house in Greensboro where we just crashed for the night. Rob, David, and I slept until after 10am this morning. I haven't done that in years, but it was a nice rest.
David has been happy and normal today. He is paler than his normal self, but that is to be expected. What is left of his hair is falling out in gobs right now, and I feel like he'll be 100% bald before we go back for another treatment.
After David's counts recover, we'll be headed over to radiology for a mapping session. Then we will start 3-4 weeks of radiation treatments. The treatments will be daily treatments Monday through Friday each week. This is the part that I am most nervous about since the side effects are quite scary. I am praying that God will calm us and keep David still during treatments so that the radiation will only hit where it's supposed to. I'll let you all know when that is about to begin.
Thanks again for all your prayers. We feel the need for them more and more each time we go.
-Kim
Wednesday, July 1, 2009
New Picture
Hi all,
I was reminded yesterday by one of Rob's co-workers that I hadn't put up a current picture of David since his eye has been removed - besides the one taken the day after his surgery. So, I thought I would put up one of him from his birthday celebration at the end of May.
We still aren't sure when he will be getting his prosthetic, but I am thinking we will wait until after he is done with radiation before we attempt that.
I'll let you know how things go at the hospital.
-Kim
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