Two days to Christmas!
So far, this has been a hard round of chemo on the little guy, but in a few days, he should be at his lowest, and then the uphill climb. He is also cutting his top teeth which makes everything seem bad.
Rob has been home since Friday, and won't have to go back until the new year, so that has been fun and a blessing. It has made the hard round of chemo a little easier on me since I have an extra pair of hands (and arms).
I hope you are all having a wonderful holiday with family and friends.
-Kim
Sunday, December 23, 2007
Tuesday, December 18, 2007
December 18, 2007
There's only one round of chemo to go!!
We were able to get David's 5th round of chemo yesterday. As usual, he did very well. He laughed, talked, and even slept for a little bit. The chemo room was extrodinarily busy, but we were still given a private room so that Rob could be there to help me with our active little guy. It was a relief to be able to get it after our little illness from last week.
Next month will be a full one with hearing tests, Exams, and our last round of chemo. As it stands, we are scheduled for the Exam and chemo on January 14th. Hopefully, we will be well enough to get it on schedule this time.
Today, Rob and I met at Isaac's preschool to watch him perform as the "Royal Decree" in his class' Christmas play. He did a very very good job. Hannah was at school in her pajamas since it was pajama day. It's a fun time of the year!
I doubt with all the busyness of Christmas that I will get to update again soon. Hannah's last day of school is Thursday, so I will have all three kids home. Rob will have all of next week off from work, so that will be a great family time for us.
We hope that your Christmas will be merry! God bless you all.
-Kim
We were able to get David's 5th round of chemo yesterday. As usual, he did very well. He laughed, talked, and even slept for a little bit. The chemo room was extrodinarily busy, but we were still given a private room so that Rob could be there to help me with our active little guy. It was a relief to be able to get it after our little illness from last week.
Next month will be a full one with hearing tests, Exams, and our last round of chemo. As it stands, we are scheduled for the Exam and chemo on January 14th. Hopefully, we will be well enough to get it on schedule this time.
Today, Rob and I met at Isaac's preschool to watch him perform as the "Royal Decree" in his class' Christmas play. He did a very very good job. Hannah was at school in her pajamas since it was pajama day. It's a fun time of the year!
I doubt with all the busyness of Christmas that I will get to update again soon. Hannah's last day of school is Thursday, so I will have all three kids home. Rob will have all of next week off from work, so that will be a great family time for us.
We hope that your Christmas will be merry! God bless you all.
-Kim
Monday, December 10, 2007
December 10, 2007
We took David over to Duke today in hopes that he would be able to get his 5th round of chemo, but no dice. He is doing much better than he was on Thursday and Friday, but his counts are still neutrapenic, so we will have to delay until his counts are higher.
He woke up on Saturday morning feverless, and has been that way since. We were so grateful for this since his fever on Friday was pretty high. He still has a bit of wheezing and a pretty nasty cough, but it seems like he is on the mend.
The plan for now is to get his counts on Thursday, and see if he is healthy enough to get chemo on Friday. Otherwise, we will take him back on Monday and hope for the best.
I am a little disappointed. I was hoping to get his chemo today so that the end would be sooner, but I am grateful that the doctors are being cautious.
In other news, David is now crawling and sitting up on his own. He is very inquisitive, and keeps me busy trying to keep him out of places that he shouldn't be. But, he seems to be happy with his new tricks
Thanks for all your prayers. I feel like this battle with RSV has been much milder than it could have been, and we attribute that to the prayers of God's people and His abundant grace.
-Kim
He woke up on Saturday morning feverless, and has been that way since. We were so grateful for this since his fever on Friday was pretty high. He still has a bit of wheezing and a pretty nasty cough, but it seems like he is on the mend.
The plan for now is to get his counts on Thursday, and see if he is healthy enough to get chemo on Friday. Otherwise, we will take him back on Monday and hope for the best.
I am a little disappointed. I was hoping to get his chemo today so that the end would be sooner, but I am grateful that the doctors are being cautious.
In other news, David is now crawling and sitting up on his own. He is very inquisitive, and keeps me busy trying to keep him out of places that he shouldn't be. But, he seems to be happy with his new tricks
Thanks for all your prayers. I feel like this battle with RSV has been much milder than it could have been, and we attribute that to the prayers of God's people and His abundant grace.
-Kim
Friday, December 7, 2007
December 7, 2007
David is very very sick. Last night he began a fever and was coughing and wheezing a lot. I took him to the pediatrician this morning, and we found that he has RSV. We aren't going to have to admit him at this point, but we have to watch him pretty closely since his worst day will be either Sunday or Monday (if the illness takes its normal course).
So....we have a very sick baby on our hands. RSV is a pretty serious illness, so we will have to be diligent.
I am still unsure whether or not he will be able to get his next round of chemo as planned, but I will find that out just as soon as possible.
For more info on RSV, check these links.
http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm
http://www.marchofdimes.com/pnhec/298_9546.asp
So....we have a very sick baby on our hands. RSV is a pretty serious illness, so we will have to be diligent.
I am still unsure whether or not he will be able to get his next round of chemo as planned, but I will find that out just as soon as possible.
For more info on RSV, check these links.
http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm
http://www.marchofdimes.com/pnhec/298_9546.asp
Friday, November 30, 2007
November 30, 2007
Today, David is 6 months old! Wow, a lot has happened in the last 6 months. I can't believe we've made it here, but...here we are.
Thanksgiving was wonderful. I was so glad that we were all able to make it down to my parents'. The weather was gorgeous, and the kids had a blast.
David is the proud new owner of two teeth. He cut them a couple days ago, and I think there are several more in the works. He is coming down with a cold right now, though. Hannah started this one, but now Rob and David seem to be following suit. I hope I can avoid it, but it's not likely.
The next chemo treatment should be one week from Monday, but we still haven't heard for sure. There won't be any exam this time. After this treatment, only one left!! Then maybe life can start to feel normal again.
I have to say that it has been a real struggle for me to be cooped up at the house all the time. I look forward to being able to get out and see real people again.
Well, I hope you are all doing well - that you are enjoying the season and not giving into the stress.
-Kim
Thanksgiving was wonderful. I was so glad that we were all able to make it down to my parents'. The weather was gorgeous, and the kids had a blast.
David is the proud new owner of two teeth. He cut them a couple days ago, and I think there are several more in the works. He is coming down with a cold right now, though. Hannah started this one, but now Rob and David seem to be following suit. I hope I can avoid it, but it's not likely.
The next chemo treatment should be one week from Monday, but we still haven't heard for sure. There won't be any exam this time. After this treatment, only one left!! Then maybe life can start to feel normal again.
I have to say that it has been a real struggle for me to be cooped up at the house all the time. I look forward to being able to get out and see real people again.
Well, I hope you are all doing well - that you are enjoying the season and not giving into the stress.
-Kim
Tuesday, November 20, 2007
November 20, 2007
It has been a little while since I updated, and many things have happened.
A week ago, Monday, David got round 4 of his chemo. Everything went smoothly, although it was a very long day. We didn't get a room this time, so only one of us was allowed back in the infusion room at a time. David is getting to strong and mobile that it was an exhausting fight to keep him from pulling on his port access, rolling over, pulling on the IV tubes, and etc. We did fine, but we were tired. Rob and I took turns hanging on to the busy little guy.
The very next day, David began to run a low grade fever. Of course this didn't start until after normal business hours, so I had to take him to the emergency room to get blood tests done. I guess they are afraid of two things when he runs a fever: they are afraid that an infection would be too hard for him to fight off when his white blood counts are low, and they are afraid that a fever could mean that he has an infection in his port. Thankfully, neither of these things were true. He was just starting a cold. I hope and pray that this will be the last time that I have to take him into the emergency room. I had to go by myself so that Rob could get the older kids in bed as Hannah had school the next day.
Wednesday I had to take David in to the pediatricians office for a follow up test after his ER visit. It was long, but our pediatrician is thorough, so I am grateful for that.
Since then, David has had a cold and a very bad diaper rash. I believe that he is cutting teeth. Other than these things, though, he is his regular cheerful self. He is getting very very close to crawling. He gets up on all fours and rocks back and forth. He can even move his legs forward, but he hasn't figured out moving his hands yet.
We will be getting his blood levels checked one more time tomorrow to make sure that we can make the trip down to my parents' house for Thanksgiving. So far, things are looking good to make the trip, but we just want to be careful.
That's all folks. Have a wonderful Holiday, and know that we are giving thanks for each of you that has taken time to give generously of yourselves to us.
-Kim
A week ago, Monday, David got round 4 of his chemo. Everything went smoothly, although it was a very long day. We didn't get a room this time, so only one of us was allowed back in the infusion room at a time. David is getting to strong and mobile that it was an exhausting fight to keep him from pulling on his port access, rolling over, pulling on the IV tubes, and etc. We did fine, but we were tired. Rob and I took turns hanging on to the busy little guy.
The very next day, David began to run a low grade fever. Of course this didn't start until after normal business hours, so I had to take him to the emergency room to get blood tests done. I guess they are afraid of two things when he runs a fever: they are afraid that an infection would be too hard for him to fight off when his white blood counts are low, and they are afraid that a fever could mean that he has an infection in his port. Thankfully, neither of these things were true. He was just starting a cold. I hope and pray that this will be the last time that I have to take him into the emergency room. I had to go by myself so that Rob could get the older kids in bed as Hannah had school the next day.
Wednesday I had to take David in to the pediatricians office for a follow up test after his ER visit. It was long, but our pediatrician is thorough, so I am grateful for that.
Since then, David has had a cold and a very bad diaper rash. I believe that he is cutting teeth. Other than these things, though, he is his regular cheerful self. He is getting very very close to crawling. He gets up on all fours and rocks back and forth. He can even move his legs forward, but he hasn't figured out moving his hands yet.
We will be getting his blood levels checked one more time tomorrow to make sure that we can make the trip down to my parents' house for Thanksgiving. So far, things are looking good to make the trip, but we just want to be careful.
That's all folks. Have a wonderful Holiday, and know that we are giving thanks for each of you that has taken time to give generously of yourselves to us.
-Kim
Friday, November 9, 2007
November 9, 2007
David's EUA today went great. The news was great too!
The doctor told us that what he now sees in David's eye is a mass of calcium. Think of it like the skeleton of what was a cancerous tumor. He thinks that the tumor is dead, and that there are likely not any more cancerous cells left.
We will still finish out the protocol for his chemo - which includes 3 more rounds of chemo and one more EUA. This will be similar to finishing your antibiotics even though your symptoms have gone away.
I guess the only bad news is that David is blind in that eye, except for a very little light/dark vision, and maybe some very blurry peripheral vision.
So, we still have a rough 3 months ahead of us while we finish out the rest of the chemo treatments, but we got about the best news possible today, and we praise God!
-Kim
The doctor told us that what he now sees in David's eye is a mass of calcium. Think of it like the skeleton of what was a cancerous tumor. He thinks that the tumor is dead, and that there are likely not any more cancerous cells left.
We will still finish out the protocol for his chemo - which includes 3 more rounds of chemo and one more EUA. This will be similar to finishing your antibiotics even though your symptoms have gone away.
I guess the only bad news is that David is blind in that eye, except for a very little light/dark vision, and maybe some very blurry peripheral vision.
So, we still have a rough 3 months ahead of us while we finish out the rest of the chemo treatments, but we got about the best news possible today, and we praise God!
-Kim
Tuesday, November 6, 2007
November 6, 2007
Things are changing around on me, but that's alright.
I will have to take David to Duke on Thursday for an audiogram. One of the side effects of the chemo drugs that he's on is hearing loss, so they are keeping tabs on that. I think he will pass with flying colors since he really attends to sounds well.
Friday morning will be the EUA to check the tumor. Then we will be speaking with a finance rep to make sure that we can make sure to choose the best healthcare options through Rob's work for next year. Then, I am hoping that we can make it home to be at Hannah's awards ceremony at her school. I don't know that she will be getting any awards, but I know that she will be glad that we are there, and that's the important part.
Monday will be the next round of chemo granting that the tests from Thursday and Friday are positive. This will be round 4 of 6, so we are getting towards the end.
David is doing well. He has been spoiled with being held alot, so he doesn't want me to put him down. I think this won't make him so mad once he learns to crawl/sit/etc. He will be able to occupy himself more. Plus, when he rolls onto his stomach, it puts pressure on his port, and I think that is uncomfortable.
I think the older two kids will be going to my parent's house this weekend since Hannah has Monday off from school. This will give Rob and I a nice break before the next round of chemo.
David has been waking up a lot in the night. I think it is because he is hungry, so I have really started to give solid foods. He seems to like oatmeal, but nothing else really.
That's all for now, but I will let you know how Thursday and Friday go.
-Kim
I will have to take David to Duke on Thursday for an audiogram. One of the side effects of the chemo drugs that he's on is hearing loss, so they are keeping tabs on that. I think he will pass with flying colors since he really attends to sounds well.
Friday morning will be the EUA to check the tumor. Then we will be speaking with a finance rep to make sure that we can make sure to choose the best healthcare options through Rob's work for next year. Then, I am hoping that we can make it home to be at Hannah's awards ceremony at her school. I don't know that she will be getting any awards, but I know that she will be glad that we are there, and that's the important part.
Monday will be the next round of chemo granting that the tests from Thursday and Friday are positive. This will be round 4 of 6, so we are getting towards the end.
David is doing well. He has been spoiled with being held alot, so he doesn't want me to put him down. I think this won't make him so mad once he learns to crawl/sit/etc. He will be able to occupy himself more. Plus, when he rolls onto his stomach, it puts pressure on his port, and I think that is uncomfortable.
I think the older two kids will be going to my parent's house this weekend since Hannah has Monday off from school. This will give Rob and I a nice break before the next round of chemo.
David has been waking up a lot in the night. I think it is because he is hungry, so I have really started to give solid foods. He seems to like oatmeal, but nothing else really.
That's all for now, but I will let you know how Thursday and Friday go.
-Kim
Monday, October 29, 2007
October 29, 2007
Tomorrow, I have to drive over to Duke to have a pre-op appointment before David's next Exam. Isaac will be with me, but he is usually very good for me.
The next exam is scheduled for November 9. I am more nervous about this one that I was for the last one. I don't know why that is. If everything looks good, then he will get his next round of chemo on November 12. Last time, we did both in one day, but it didn't work out that way this time. I am sad that we will have to go over and spend the better portion of two days in Durham, but, I am more grateful that we are so close to good care.
David is showing some of the more noticible side effects of his chemo: like losing his hair. I think this is a good reminder for me. It is hard to keep him away from people when he seems so healthy.
Well, I just wanted to update a little since I haven't in awhile.
-Kim
ps. You can now subscribe to this blog by putting your email address into the space provided underneath David's picture on the left of this page. Then, all my blog posts will be emailed to you each time I update!
The next exam is scheduled for November 9. I am more nervous about this one that I was for the last one. I don't know why that is. If everything looks good, then he will get his next round of chemo on November 12. Last time, we did both in one day, but it didn't work out that way this time. I am sad that we will have to go over and spend the better portion of two days in Durham, but, I am more grateful that we are so close to good care.
David is showing some of the more noticible side effects of his chemo: like losing his hair. I think this is a good reminder for me. It is hard to keep him away from people when he seems so healthy.
Well, I just wanted to update a little since I haven't in awhile.
-Kim
ps. You can now subscribe to this blog by putting your email address into the space provided underneath David's picture on the left of this page. Then, all my blog posts will be emailed to you each time I update!
Tuesday, October 23, 2007
October 23, 2007
A little update on the past week.
Blood counts yesterday were all good. This round, David's platelets were the ones that dipped low enough that we had to watch out, but yesterday, they were back up a little.
Yesterday was a rough one. David was very very fussy, and wasn't at all interested in napping. He was also throwing up more than normal, so I was having a time with him. He seems to be better today, though. He has had a good nap already and has kept a good portion of his feedings down. He is currently sitting in his swing spitting at me. His face looks somewhat like this.
Rob's Grandmother will be here from South Carolina this weekend. We are hoping that David will be up to a nice visit with her.
Here are some things that you might find interesting. Sorry I couldn't embed the videos, but just click on the link and you should be able to see them. I will try to figure it out and be high tech next time.
Cameras are concerning.
"I can fly!"
With Dad (video)
http://www.youtube.com/watch?v=BPgiVjaB6VE
More fun with Dad (video)
http://www.youtube.com/watch?v=kx7iB9eS6Jo
I will update again soon.
-Kim
Blood counts yesterday were all good. This round, David's platelets were the ones that dipped low enough that we had to watch out, but yesterday, they were back up a little.
Yesterday was a rough one. David was very very fussy, and wasn't at all interested in napping. He was also throwing up more than normal, so I was having a time with him. He seems to be better today, though. He has had a good nap already and has kept a good portion of his feedings down. He is currently sitting in his swing spitting at me. His face looks somewhat like this.
Rob's Grandmother will be here from South Carolina this weekend. We are hoping that David will be up to a nice visit with her.
Here are some things that you might find interesting. Sorry I couldn't embed the videos, but just click on the link and you should be able to see them. I will try to figure it out and be high tech next time.
Cameras are concerning.
"I can fly!"
With Dad (video)
http://www.youtube.com/watch?v=BPgiVjaB6VE
More fun with Dad (video)
http://www.youtube.com/watch?v=kx7iB9eS6Jo
I will update again soon.
-Kim
Wednesday, October 17, 2007
October 17, 2007
David got his 3rd round of chemo on Monday. There was not an exam this time, so we don't know what the tumor is doing at this point.
David did very well. He is getting so strong and active that we had to wrestle with him the whole time to keep him from lying on his port, but he seemed to think it was a fun game and kept a good attitude.
So far, he is not showing many side effects, but it is still early. He has a tiny little cold, but I think it is steadily getting better, so I am glad for that.
-Kim
David did very well. He is getting so strong and active that we had to wrestle with him the whole time to keep him from lying on his port, but he seemed to think it was a fun game and kept a good attitude.
So far, he is not showing many side effects, but it is still early. He has a tiny little cold, but I think it is steadily getting better, so I am glad for that.
-Kim
Tuesday, October 9, 2007
October 9, 2007
It's been awhile since I have updated you all on the progress.
Let's see.
David is cutting teeth. He has been having some fussiness with it all, and I will miss that little toothless grin that is so precious, but things must move on. Hopefully this won't last too long.
He has also started to eat some solid foods. He is rapidly approaching 16 pounds, so he is needing a little extra. He seems to do well with the cereal, but other tastes will have to be developed....he doesn't like banannas.
We are less than a week away from his next treatment. It will be on Monday, October 15 - sometime in the afternoon. As far as we know, there will be no exam before this treatment, so we will have to wait another whole month before we find out how the tumor is doing. There is some obvious lack of sight in that eye since David will cross it a lot and turns his head quite far to see things on the right side of his body. But he seems to be seeing well out of the other eye. He recognizes Rob and I, and I think he even recognizes Hannah and Isaac. I don't know what the implications of this will be for the future, but he at least has one fully functional eye for now.
Hannah and Isaac are busy growing up. Hannah is enjoying school, and Isaac is learning to function without his big sister calling the shots. Overall, it is positive.
We spent this past weekend up in Virginia celebrating my grandparent's 63 anniversary. It was a lovely time, and relaxing too. It had been so long since we had seen that part of the family, and it was great for the kids to have contact with all their grands, aunts, uncles, cousins, and etc. We also got to see the duplex where Rob lived for a year or so when he was younger, so the kids enjoyed that.
I think that is all for now. Speaking of fussy babies, I have one currently, so I should probably attend to him.
-Kim
Let's see.
David is cutting teeth. He has been having some fussiness with it all, and I will miss that little toothless grin that is so precious, but things must move on. Hopefully this won't last too long.
He has also started to eat some solid foods. He is rapidly approaching 16 pounds, so he is needing a little extra. He seems to do well with the cereal, but other tastes will have to be developed....he doesn't like banannas.
We are less than a week away from his next treatment. It will be on Monday, October 15 - sometime in the afternoon. As far as we know, there will be no exam before this treatment, so we will have to wait another whole month before we find out how the tumor is doing. There is some obvious lack of sight in that eye since David will cross it a lot and turns his head quite far to see things on the right side of his body. But he seems to be seeing well out of the other eye. He recognizes Rob and I, and I think he even recognizes Hannah and Isaac. I don't know what the implications of this will be for the future, but he at least has one fully functional eye for now.
Hannah and Isaac are busy growing up. Hannah is enjoying school, and Isaac is learning to function without his big sister calling the shots. Overall, it is positive.
We spent this past weekend up in Virginia celebrating my grandparent's 63 anniversary. It was a lovely time, and relaxing too. It had been so long since we had seen that part of the family, and it was great for the kids to have contact with all their grands, aunts, uncles, cousins, and etc. We also got to see the duplex where Rob lived for a year or so when he was younger, so the kids enjoyed that.
I think that is all for now. Speaking of fussy babies, I have one currently, so I should probably attend to him.
-Kim
Thursday, September 27, 2007
September 27, 2007
We have to start giving David shots again tonight. Unfortunately, one of his blood counts had gone down far and fast from Monday, so the doctor told us that we have to start the shots again. I hate doing this from the standpoint of making the poor guy feel badly again. Hopefully we will be able to stop them again on Monday.
Last night was not a good night for the little guy. I don't know what was going on, but he wouldn't stay asleep for long periods of time. I think maybe the little bit of a cold that he has made it harder for him to be restful. Hopefully he will sleep better tonight since the cold seems to have subsided over the day today.
Monday, I will take him in for his bloodwork, and then go right across the hallway to see his normal pediatrician. This will be fine, since we love her. She is the one that caught David's condition in the first place, so she's somewhat of a hero.
Despite everything, David has continued to grow well and be fairly happy. He is rolling over now - a trick that makes him a little frustrated. He can only roll from his back to his tummy, but not the other way around, so it makes him a little mad. Last night, he was up on all fours for a few seconds. Isaac was crawling by David's age, so I hope that's not coming too soon. David is busting out of many of his smaller items of clothing, so I have had to retire them and pull out the bigger stuff - more proof that he is growing. I think the pediatrician will be impressed on Monday!
-Kim
Last night was not a good night for the little guy. I don't know what was going on, but he wouldn't stay asleep for long periods of time. I think maybe the little bit of a cold that he has made it harder for him to be restful. Hopefully he will sleep better tonight since the cold seems to have subsided over the day today.
Monday, I will take him in for his bloodwork, and then go right across the hallway to see his normal pediatrician. This will be fine, since we love her. She is the one that caught David's condition in the first place, so she's somewhat of a hero.
Despite everything, David has continued to grow well and be fairly happy. He is rolling over now - a trick that makes him a little frustrated. He can only roll from his back to his tummy, but not the other way around, so it makes him a little mad. Last night, he was up on all fours for a few seconds. Isaac was crawling by David's age, so I hope that's not coming too soon. David is busting out of many of his smaller items of clothing, so I have had to retire them and pull out the bigger stuff - more proof that he is growing. I think the pediatrician will be impressed on Monday!
-Kim
Tuesday, September 25, 2007
September 25, 2007
David's counts were good enough yesterday for us to stop giving him his shots for this go around. I am particularly glad about that since I think much of his discomfort comes from them. He seems to be much happier already this morning, and he ate very very well.
The weekend was fun. We got to eat lunch on Sunday with my Mom and Grandmother. My mom let me borrow her carpet cleaner. My carpets look sooooooo much better. It was a long overdue cleaning!
Last night, we enjoyed some Teriyaki Chicken sent to us by someone at Rob's work. It was so nice not to have to cook since David had been somewhat more fussy this weekend.
We are all fighting colds right now....again. David is the only one that seems to not catch them very much. We are thankful for that.
-Kim
The weekend was fun. We got to eat lunch on Sunday with my Mom and Grandmother. My mom let me borrow her carpet cleaner. My carpets look sooooooo much better. It was a long overdue cleaning!
Last night, we enjoyed some Teriyaki Chicken sent to us by someone at Rob's work. It was so nice not to have to cook since David had been somewhat more fussy this weekend.
We are all fighting colds right now....again. David is the only one that seems to not catch them very much. We are thankful for that.
-Kim
Thursday, September 20, 2007
September 20, 2007
I took David in for his first blood count for this round of chemo. They came back good - very similar to the first counts after the first round. It was very soon after the first bloodwork that he started to feel pretty bad last time, so I am preparing for a few rough days.
David's normal lab tech, Kathy, was not there today. David loves Kathy, and never cries when she draws his blood (through a heel stick). He just laughs and coos at her, and she coos back. We all really love her. Today was a little rough, since the tech that was there was not as gentle. But we made it through.
So far, I think that we are managing the discomfort a little better with this round. I don't know that the pain from the shots has really begun yet since we've only given 2 shots, but some of the other symptoms seem to be more managable. David has also been sleeping really well since Monday. He has slept all the way through the night 2 nights, and then the other nights he has only gotten up once. I think being rested is helping him to deal with all the other stuff.
As you can see, we have a whole lot to be thankful for!
-Kim
David's normal lab tech, Kathy, was not there today. David loves Kathy, and never cries when she draws his blood (through a heel stick). He just laughs and coos at her, and she coos back. We all really love her. Today was a little rough, since the tech that was there was not as gentle. But we made it through.
So far, I think that we are managing the discomfort a little better with this round. I don't know that the pain from the shots has really begun yet since we've only given 2 shots, but some of the other symptoms seem to be more managable. David has also been sleeping really well since Monday. He has slept all the way through the night 2 nights, and then the other nights he has only gotten up once. I think being rested is helping him to deal with all the other stuff.
As you can see, we have a whole lot to be thankful for!
-Kim
Tuesday, September 18, 2007
September 18, 2007
"I will praise You, O Lord, with my whole heart;
I will tell of all Your marvelous works.
I will be glad and rejoice in You;
I will sing praise to Your name, O Most High"
I will tell of all Your marvelous works.
I will be glad and rejoice in You;
I will sing praise to Your name, O Most High"
This will likely be a long post since there is so much to tell.
It was an early morning. We had to be at DUMC at 6am for David's exam. This was the most exciting part of the day since we got great news. David's tumor has shrunk to about 25% of its original size! Everyone seemed to marvel at this since he has only had one treatment of chemo. But we know that prayer is more potent than any chemo drug.
Here is the picture that the Doctor gave to us. The top section is the tumor from a month ago, and the bottom is the tumor currently.
The remaining tumor is located right over the section of the retina that you see best with, so the doctor didn't give us much hope for good sight in this eye, but David is probably seeing better than he did before, so that is still great news. If the tumor shrinks more, he could still regain some sight in that eye.
We went straight from the exam to have his next treatment. Due to new recommendations of how to administer one of the drugs that he is getting, the actual administration of the drugs now takes 4 hours instead of 1 hour. We didn't leave the hospital until 6pm last night, so the day was very very long.
While the lab was processing David's blood count, we met a woman, Kylee, and her son, Milo.
Milo was diagnosed in June with a very rare brain tumor. The doctors say that the cure rate for this kind of tumor is only 10%. Kylee has had to move to Durham to be near Duke. She is unable to work since caring for Milo is a full time job. She has no family, and knows no one. She really can't get out of the house to meet people since Milo is so sick. She has no car, and Milo's dad has left them since he can't handle the stress of the illness. Kylee's mom comes in on the weekend, but then has to go back home to her job. Milo has come down with pneumonia. Rob and I sat with her and tried our best to show her love. It made us both understand our blessing even in this tough time. We aren't alone, David is not as sick, and we have hope - even in death. We are hoping to be able to keep in contact with Kylee.
My mom was able to stay with the kids and drive them to and from school. It was really nice to not have to think about whether or not they were being taken good care of during the day. Hannah and Isaac had a wonderful time.
The next chemo treatment is scheduled for October 15. We won't have an exam before that treatment. The next exam will be before the chemo treatment in November.
Thank you to all who have been praying. It is clear to us that it has been effective. Thank you also to everyone who has been generous to our family with time, money, meals, babysitting, and etc. I have no doubt that because of your generosity, my mind was free enough from worry yesterday to be able to conect with Kylee and her son. God has used you all in such a mighty way. Thank you for parnering with us and helping to bear our burden.
-Kim
Friday, September 14, 2007
September 14, 2007
This morning, Isaac and I drove David over to DUMC for a pre-op appointment. Two hours of driving for 15 minutes of questions that they could have asked me over the phone is a little irritating, but that's the way it is.
Monday will begin long before dawn. The nurse said that she thinks we are supposed to be the first appointment of the day, so our arrival time will be 6am. I have to call later this afternoon to make sure about the time. The eye doctor will do the EUA (exam under anesthesia), and if all looks favorable, we will slither through the tunnels over to the Day Hospital for his next chemo treatment. All-in-all, they should have us occupied for about 10 hours. There is a possibility that they will make us stay overnight in the hospital since David is still a little guy, but I hope not. It is so much more comfortable at home.
I have to admit that I am a little nervous. We are hoping that the news from the EUA will tell us that the first round of chemo gave the tumor a hard hit, but there is always the chance that nothing happened at all, and then we will have to readjust. But I am doing my best to let tomorrow worry about itself. We will spend the weekend celebrating Rob's birthday and enjoying the cooler weather and the much needed rain.
Thanks for reading!
-Kim
Monday will begin long before dawn. The nurse said that she thinks we are supposed to be the first appointment of the day, so our arrival time will be 6am. I have to call later this afternoon to make sure about the time. The eye doctor will do the EUA (exam under anesthesia), and if all looks favorable, we will slither through the tunnels over to the Day Hospital for his next chemo treatment. All-in-all, they should have us occupied for about 10 hours. There is a possibility that they will make us stay overnight in the hospital since David is still a little guy, but I hope not. It is so much more comfortable at home.
I have to admit that I am a little nervous. We are hoping that the news from the EUA will tell us that the first round of chemo gave the tumor a hard hit, but there is always the chance that nothing happened at all, and then we will have to readjust. But I am doing my best to let tomorrow worry about itself. We will spend the weekend celebrating Rob's birthday and enjoying the cooler weather and the much needed rain.
Thanks for reading!
-Kim
Tuesday, September 11, 2007
September 11, 2007
We finally have a date for the next Exam Under Anesthesia (EUA). It will be Monday, September 17. I have been told that it will be the first exam of the day, and then we should be going over to get the next round of chemo as long as the exam's news is favorable.
David's counts yesterday were good. They said that it seems that he has recovered and that we don' t have to take him to get blood drawn until after the next round of chemo. So, he will avoid getting stuck one time before it all starts over again.
The little guy has been sleeping very well the last two nights. It's like we are getting back into a good routine again. Too bad it won't last very long, but we will take what we can get. I know that a few nights of good sleep will be good for me before we start down the next slippery slope.
We have all been fighting colds - David included. I think Rob is finally over his, and I though Hannah's was done until she woke up in the middle of the night unable to breathe through her nose again. I think I am on the mend, but would really like for all of us to be better before Monday. So that is a prayer request.
I think that this next round of chemo could take David a little lower than it did last time. I am trying to prepare myself for this, but really don't know how to do that. I am trying to get the house in tip top shape again so that I don't have to worry about that if I have to comfort him all day instead of doing work. I don't have much left to do to get to that point.
Well, that is the news. Thank you to everyone who has brought us meals, or given us gas cards. They are so appreciated!
-Kim
David's counts yesterday were good. They said that it seems that he has recovered and that we don' t have to take him to get blood drawn until after the next round of chemo. So, he will avoid getting stuck one time before it all starts over again.
The little guy has been sleeping very well the last two nights. It's like we are getting back into a good routine again. Too bad it won't last very long, but we will take what we can get. I know that a few nights of good sleep will be good for me before we start down the next slippery slope.
We have all been fighting colds - David included. I think Rob is finally over his, and I though Hannah's was done until she woke up in the middle of the night unable to breathe through her nose again. I think I am on the mend, but would really like for all of us to be better before Monday. So that is a prayer request.
I think that this next round of chemo could take David a little lower than it did last time. I am trying to prepare myself for this, but really don't know how to do that. I am trying to get the house in tip top shape again so that I don't have to worry about that if I have to comfort him all day instead of doing work. I don't have much left to do to get to that point.
Well, that is the news. Thank you to everyone who has brought us meals, or given us gas cards. They are so appreciated!
-Kim
Wednesday, September 5, 2007
September 5, 2007
We had a nice long weekend! Monday, we got to celbrate Isaac's birthday with my parents, Grandma Goodall (G'ma G.), and Melissa and Elijah. It was a very fun, although hot, day. We went to the local "zoo", fed the ducks at a pond, blew a plethora of bubbles in the front yard, and just hung out. It was nice.
David's counts were every which way again yesterday. His hemoglobin is looking good, but his platelets were down, and so was his ANC (Absolute Nutraphil Count). It is obvious that the chemo is still working on him. I am just hoping that I don't have to start his shots back up again until the next round since I think they bother him. We have heard and read that these shots can make patients' bones ache.
The little guy has been somewhat more fussy again yesterday and today. I think that it is possible that he is coming down with the cold that the rest of us have had. Hopefully it won't hit him hard, but I am coming to realize that it will be nearly impossible for us not to spread things to him. We are washing hands all the time and keeping out of his face, but I think he is still bound for it. I am praying that we will all stay well this upcoming cold season so that David will stay well too.
I will leave you today with a few pictures that you may enjoy. More updates to come!
-Kim
Hannah and G'ma G. Just too cute not to show you
Isaac with a loaf of bread - on the way to feed the ducks
Hot and sticky cousins
CAKE!!!
David and Daddy.
Isaac on his way to preschool
David's counts were every which way again yesterday. His hemoglobin is looking good, but his platelets were down, and so was his ANC (Absolute Nutraphil Count). It is obvious that the chemo is still working on him. I am just hoping that I don't have to start his shots back up again until the next round since I think they bother him. We have heard and read that these shots can make patients' bones ache.
The little guy has been somewhat more fussy again yesterday and today. I think that it is possible that he is coming down with the cold that the rest of us have had. Hopefully it won't hit him hard, but I am coming to realize that it will be nearly impossible for us not to spread things to him. We are washing hands all the time and keeping out of his face, but I think he is still bound for it. I am praying that we will all stay well this upcoming cold season so that David will stay well too.
I will leave you today with a few pictures that you may enjoy. More updates to come!
-Kim
Hannah and G'ma G. Just too cute not to show you
Isaac with a loaf of bread - on the way to feed the ducks
Hot and sticky cousins
CAKE!!!
David and Daddy.
Isaac on his way to preschool
Saturday, September 1, 2007
September 1, 2007
The past two days, David has been fairly normal again. I have been able to take him off all the meds that he was on to manage the discomforts of the chemo's side effects. Now, the only thing he has to take are his antibiotics. It has been really nice to see him smiling and hear him laughing again. Even though I know that the next round of chemo will probably take him a little lower than this one did, it is nice to have this little reprieve.
He has also been sleeping better at night. Only waking up 2 times each night to eat. He is somewhat thinner than he was before, and I know that it will be good for him to build up a little before we hit him with the next punch.
At night, I can still see the whiteness in his eye when he looks at the light. Sometimes it is hard not to worry that the chemo isn't doing it's job. I know I have to leave that in God's hands.
We still don't have the dates of his next exam and treatment. Hopefully we will get that early next week.
Have a great labor day weekend!
-Kim
He has also been sleeping better at night. Only waking up 2 times each night to eat. He is somewhat thinner than he was before, and I know that it will be good for him to build up a little before we hit him with the next punch.
At night, I can still see the whiteness in his eye when he looks at the light. Sometimes it is hard not to worry that the chemo isn't doing it's job. I know I have to leave that in God's hands.
We still don't have the dates of his next exam and treatment. Hopefully we will get that early next week.
Have a great labor day weekend!
-Kim
Wednesday, August 29, 2007
August 29, 2007
David's hemoglobin was up a little today from his last count. That is encouraging. The nurse said that he may have hit his low for this round of chemo. It has been explained to us that the side effects are like a see-saw. Up and down. Usually, they try to time it so that the next round of chemo comes when his body is the healthiest that it can be. We are hoping that he will start to feel somewhat better and start to sleep again at night. I am quite tired as I haven't been sleeping well since this whole ordeal started about a month ago.
We are all fighting off colds...including David. It seems to be going around. Even though we are handwashing fiends and we aren't going anywhere to be around people, we have still picked it up. Hopefully it will stay mild and be shortlived.
I am doing my best to keep up with all the housework. So far, I haven't done too bad. It is helpful that Hannah is in school now since that is one less person in the house to make messes during the day. She is really enjoying it, too!
I will leave you today with a quote from a book that I have been reading.
"In the person of his Son, [God] is always in our midst, as the one who holds each and every aspect of creation, including all of its evil aspects, in his hands so that he may carry it to where it accomplishes exactly what he wants."
-from Suffering and the Sovereignty of God by John Piper and Justin Taylor
Thanks for reading.
-Kim
We are all fighting off colds...including David. It seems to be going around. Even though we are handwashing fiends and we aren't going anywhere to be around people, we have still picked it up. Hopefully it will stay mild and be shortlived.
I am doing my best to keep up with all the housework. So far, I haven't done too bad. It is helpful that Hannah is in school now since that is one less person in the house to make messes during the day. She is really enjoying it, too!
I will leave you today with a quote from a book that I have been reading.
"In the person of his Son, [God] is always in our midst, as the one who holds each and every aspect of creation, including all of its evil aspects, in his hands so that he may carry it to where it accomplishes exactly what he wants."
-from Suffering and the Sovereignty of God by John Piper and Justin Taylor
Thanks for reading.
-Kim
Tuesday, August 28, 2007
August 28, 2007
David has not been sleeping well. He must be uncomfortable, but since he can't say anything, it is hard to determine exactly what ails him. He was a little happier yesterday during the day, so that was nice.
According to yesterday's blood counts, his hemoglobin is quite low. Everything else seems to be fine, but if his hemoglobin continues to drop, they may have to give him a transfusion. We are hoping and praying that this won't be the case.
Hannah started school today. I always thought that this would be a difficult day for me, but it wasn't. With all the care that David is requiring lately, it has been hard for me to keep her occupied. I know that she is going to have so much fun at school that it was easy for me to let her go.
I gave you all the wrong email address for my friend Emily who will be coordinating things for me. The correct one is embeasley@gmail.com I went back and changed it on the last entry, but just in case you all need it.
Some people have been wondering how our pediatrician was able to catch David's retinoblastoma. Here is a picture that shows you kind of what she saw during her exam. We are also able to see this at times when David looks at the light in just the right way. This is not a picture of David, but the white reflex is what we are able to see.
-Kim
According to yesterday's blood counts, his hemoglobin is quite low. Everything else seems to be fine, but if his hemoglobin continues to drop, they may have to give him a transfusion. We are hoping and praying that this won't be the case.
Hannah started school today. I always thought that this would be a difficult day for me, but it wasn't. With all the care that David is requiring lately, it has been hard for me to keep her occupied. I know that she is going to have so much fun at school that it was easy for me to let her go.
I gave you all the wrong email address for my friend Emily who will be coordinating things for me. The correct one is embeasley@gmail.com I went back and changed it on the last entry, but just in case you all need it.
Some people have been wondering how our pediatrician was able to catch David's retinoblastoma. Here is a picture that shows you kind of what she saw during her exam. We are also able to see this at times when David looks at the light in just the right way. This is not a picture of David, but the white reflex is what we are able to see.
-Kim
Sunday, August 26, 2007
August 26, 2007
Many people have been asking us what they can do for us. We have been amazed at how willing people are to carry this burden with us.
First of all we need prayer. Here are some specific things that you can pray:
1. Pray for strength. Rob and I both need physical and mental strength in order to keep on functioning. This has added a whole lot more to each of our daily routines, and without supernatural sustainance, we won't make it through. Pray for strong immune systems for the whole family as we enter into cold and flu season. Pray for our family as a whole to become a stronger unit.
2. Pray for healing. Our desire is that the tumor would disappear, than no new tumors would grow, and that David would regain some of his lost sight in that eye.
3. Pray that we won't waste this circumstance. It is so easy in times of pain and suffering to become angry, bitter, and self absorbed. Please pray that David's cancer will only force us to cling more tightly to the Savior. Pray that through this, we would learn more about our wonderful God than ever before in our lives. Pray that this circumstance would soften the hearts of Hannah and Isaac to be able to trust God themselves one day. Pray that the retelling of this will cause David to walk with the Lord. Pray that as a result of this, our whole family will develop an uncommon faith and trust in the Lord. Pray that as we deal with all the details that we will continue to look out to other hurting people and touch them with the love of Christ. I guess this request is the most important.
So, prayer is the one thing that we would ask of all of you.
Some of you have asked us how you can help in other ways. Here is a list of things that we would find most helpful.
1. Gas cards - travelling back and forth to Durham takes a lot of gas. We usually buy gas at Walmart, Sheetz, or Gate Petroleum.
2. Prepaid Visa Cards - when we are at the hospital, we often have to buy meals, pick up prescriptions, and do other things related to David's care. These cards allow us to be able to do all of these things right there at the hospital so that we don't have to drive all around town and add to an already full and hectic day.
3. Restaurant Gift Cards - the long days at the hospital make evening meals rather difficult. When we don't have to worry about dinner, the day is much less stressful. We are not picky about restaurants, but some suggestions near our house are: Wendy's, IHOP, Chick-fil-A, Panera Bread, Papa John's, and Arby's.
4. Meals, Babysitting, etc. - some people have asked if they can help by cooking a meal, babysitting, running errands, and other things like this. Our good friend, Emily Beasley, is going to be coordinating all of these things for me. You can contact her at: 336-207-3916 or embeasley@gmail.com
5. Moral Support - we love getting your letter, emails, and words of encouragement. It is a great testimony to our kids, and I have saved every letter and email. Just knowing that we crossed your mind, that you prayed for us, and that we don't stand alone does more for us than you will ever know. Feel free to write to us. I can't promise a response, but know that we read each and every letter (sometimes more than once)! If you don't have our address, email me, and I will send it to you. rokihais@yahoo.com
Thank you all again. David is awake, so I must go. I will update you on his progress more later.
-Kim
First of all we need prayer. Here are some specific things that you can pray:
1. Pray for strength. Rob and I both need physical and mental strength in order to keep on functioning. This has added a whole lot more to each of our daily routines, and without supernatural sustainance, we won't make it through. Pray for strong immune systems for the whole family as we enter into cold and flu season. Pray for our family as a whole to become a stronger unit.
2. Pray for healing. Our desire is that the tumor would disappear, than no new tumors would grow, and that David would regain some of his lost sight in that eye.
3. Pray that we won't waste this circumstance. It is so easy in times of pain and suffering to become angry, bitter, and self absorbed. Please pray that David's cancer will only force us to cling more tightly to the Savior. Pray that through this, we would learn more about our wonderful God than ever before in our lives. Pray that this circumstance would soften the hearts of Hannah and Isaac to be able to trust God themselves one day. Pray that the retelling of this will cause David to walk with the Lord. Pray that as a result of this, our whole family will develop an uncommon faith and trust in the Lord. Pray that as we deal with all the details that we will continue to look out to other hurting people and touch them with the love of Christ. I guess this request is the most important.
So, prayer is the one thing that we would ask of all of you.
Some of you have asked us how you can help in other ways. Here is a list of things that we would find most helpful.
1. Gas cards - travelling back and forth to Durham takes a lot of gas. We usually buy gas at Walmart, Sheetz, or Gate Petroleum.
2. Prepaid Visa Cards - when we are at the hospital, we often have to buy meals, pick up prescriptions, and do other things related to David's care. These cards allow us to be able to do all of these things right there at the hospital so that we don't have to drive all around town and add to an already full and hectic day.
3. Restaurant Gift Cards - the long days at the hospital make evening meals rather difficult. When we don't have to worry about dinner, the day is much less stressful. We are not picky about restaurants, but some suggestions near our house are: Wendy's, IHOP, Chick-fil-A, Panera Bread, Papa John's, and Arby's.
4. Meals, Babysitting, etc. - some people have asked if they can help by cooking a meal, babysitting, running errands, and other things like this. Our good friend, Emily Beasley, is going to be coordinating all of these things for me. You can contact her at: 336-207-3916 or embeasley@gmail.com
5. Moral Support - we love getting your letter, emails, and words of encouragement. It is a great testimony to our kids, and I have saved every letter and email. Just knowing that we crossed your mind, that you prayed for us, and that we don't stand alone does more for us than you will ever know. Feel free to write to us. I can't promise a response, but know that we read each and every letter (sometimes more than once)! If you don't have our address, email me, and I will send it to you. rokihais@yahoo.com
Thank you all again. David is awake, so I must go. I will update you on his progress more later.
-Kim
Tuesday, August 21, 2007
August 21, 2007
David received his first round of chemo yesterday. It was about a 7 hour process. A long day.
The little guy did great. He was happy and active the whole time. Rob and I learned several important things about how to care for him once we got him home - including how to give him a daily shot.
I alway find the days at the hospital the hardest to handle. It is so heavy being there around all of those very very sick kids. By the time I get home, I am super tired. I am finding it almost essential to have Rob there with me on those days since he is my best moral support. We are hoping that he will be able to be there each time.
During the night and this morning, David has been somewhat fussier than normal. He has a hard time staying asleep. I think this has something to do with being a little more gassy than normal - likely a side effect of the chemo. He is currently trying to sleep on my shoulder. I would love to be able to take a small nap today since last night was a little rough.
-Kim
David and his Daffy Duck bandaid.
The little guy did great. He was happy and active the whole time. Rob and I learned several important things about how to care for him once we got him home - including how to give him a daily shot.
I alway find the days at the hospital the hardest to handle. It is so heavy being there around all of those very very sick kids. By the time I get home, I am super tired. I am finding it almost essential to have Rob there with me on those days since he is my best moral support. We are hoping that he will be able to be there each time.
During the night and this morning, David has been somewhat fussier than normal. He has a hard time staying asleep. I think this has something to do with being a little more gassy than normal - likely a side effect of the chemo. He is currently trying to sleep on my shoulder. I would love to be able to take a small nap today since last night was a little rough.
-Kim
David and his Daffy Duck bandaid.
Friday, August 17, 2007
August 17, 2007
David got his IV port put in yesterday. He did very very well. Now, we just have to make sure that it doesn't get infected before the incisions heal.
He is supposed to have his first chemo treatment on Monday, but he has a little cold, so we aren't sure if this will postpone that. I am anxious to get started, but I don't want to push it before his body is ready.
-Kim
He is supposed to have his first chemo treatment on Monday, but he has a little cold, so we aren't sure if this will postpone that. I am anxious to get started, but I don't want to push it before his body is ready.
-Kim
Wednesday, August 15, 2007
August 15, 2007
I took David for his hearing test today. I guess they have to monitor his hearing since the chemo can sometimes damage it.
Tomorrow we will be over at DUMC for most of the day while they insert the IV port. It will be another long day, but they have told us that we will be meeting with lots of people while David is in surgery, so that will take up our down time. They also told us that we shouldn't have to stay overnight, which would be really nice.
Monday, the chemo will start. They have told us that is will take 1-1.5 hours to administer, and then we should be able to head right on home.
I must say that I am very nervous as it gets closer to the time to start this treatment. I am so thankful that Rob and I are on the same page, though. We have needed that unity so much during this time. We know that God is in control, even though the future is frightening at this point.
-Kim
Tomorrow we will be over at DUMC for most of the day while they insert the IV port. It will be another long day, but they have told us that we will be meeting with lots of people while David is in surgery, so that will take up our down time. They also told us that we shouldn't have to stay overnight, which would be really nice.
Monday, the chemo will start. They have told us that is will take 1-1.5 hours to administer, and then we should be able to head right on home.
I must say that I am very nervous as it gets closer to the time to start this treatment. I am so thankful that Rob and I are on the same page, though. We have needed that unity so much during this time. We know that God is in control, even though the future is frightening at this point.
-Kim
Tuesday, August 14, 2007
August 14, 2007
Tomorrow I will be taking David to Duke University Medical Center (DUMC) for some pre-chemo testing.
Thursday, we will go in early in the morning for them to implant the IV port for him to more easily be given chemo and have blood drawn. This is usually an outpatient surgery. I don't know if they will keep us overnight for that or not, but I am gearing up for a stay. Rob might come home to be with Hannah and Isaac if they keep David overnight.
I think that treatment, no matter what, will involve several trips a month to DUMC for treatment and testing and etc.
We are hoping to speak to the financial person soon to come up with a plan for payment of all the treatment, tests, hospital stays, doctors fees, and other items that will need to be paid for.
Thanks again to everyone for keeping up with us and praying for us.
-Kim
Thursday, we will go in early in the morning for them to implant the IV port for him to more easily be given chemo and have blood drawn. This is usually an outpatient surgery. I don't know if they will keep us overnight for that or not, but I am gearing up for a stay. Rob might come home to be with Hannah and Isaac if they keep David overnight.
I think that treatment, no matter what, will involve several trips a month to DUMC for treatment and testing and etc.
We are hoping to speak to the financial person soon to come up with a plan for payment of all the treatment, tests, hospital stays, doctors fees, and other items that will need to be paid for.
Thanks again to everyone for keeping up with us and praying for us.
-Kim
Monday, August 13, 2007
August 13, 2007
Today, we are very thankful and encouraged because we had a great meeting with the oncology team at Duke that specializes in retinoblastoma. They were very helpful, patient, and answered all of our thousands of questions.
We feel that God was with us today and is really leading us in our decision. For the last couple of days and even as of this morning, we both felt that the oncology team would have to give us some VERY strong reasons to do a chemotherapy treatment in order for us to change our mind. We were almost 99% certain that removing the eye was the safest, quickest, and most effective route. Today, we learned otherwise, and have made an almost complete turnaround.
We learned, contrary to what we understood over the past couple of weeks, that there is still a possibility that this is a hereditary disorder, even though we have had no instances occur in either of our families. In other words, the disorder might be inherited, but David is the only one in our family so far that has actually had cells mutate because of it. This is very important, because the hereditary form has a much higher probability of showing up in the other eye. The doctor also shared that there are were two pixels that showed up on the CT scan in his “healthy” eye that may or may not be mutating cells. This causes us to lean strongly towards the chemotherapy treatment, which will hopefully shrink/kill the existing tumor and also kill any other diseased cells that are too small for us to see at this point.
Although there are still risks to chemotherapy, the ones described to us were less than what we might have expected. However, with the other information we received today, we think we are leaning towards at least giving this a shot.
As always, David was a very good boy today. He talked and smiled and only cried a little when they drew blood for lab work. He also loaded some diapers and did some push ups on the exam table to further impress the doctors and nurses.
We are so thankful to everyone for their prayers and support and we really feel the Lord’s leading at this time. We are seeing that it is true that God gives wisdom generously to those who ask. David is an excellent little boy and God has an excellent plan for his life. We also want to thank everyone for praying for our courage and strength during this process. We don’t know how we have strength now, but we do, and it must be because of our Strong Tower. Please continue to pray as we make a final decision and we will keep you posted. Pray because God is listening!
-Rob
We feel that God was with us today and is really leading us in our decision. For the last couple of days and even as of this morning, we both felt that the oncology team would have to give us some VERY strong reasons to do a chemotherapy treatment in order for us to change our mind. We were almost 99% certain that removing the eye was the safest, quickest, and most effective route. Today, we learned otherwise, and have made an almost complete turnaround.
We learned, contrary to what we understood over the past couple of weeks, that there is still a possibility that this is a hereditary disorder, even though we have had no instances occur in either of our families. In other words, the disorder might be inherited, but David is the only one in our family so far that has actually had cells mutate because of it. This is very important, because the hereditary form has a much higher probability of showing up in the other eye. The doctor also shared that there are were two pixels that showed up on the CT scan in his “healthy” eye that may or may not be mutating cells. This causes us to lean strongly towards the chemotherapy treatment, which will hopefully shrink/kill the existing tumor and also kill any other diseased cells that are too small for us to see at this point.
Although there are still risks to chemotherapy, the ones described to us were less than what we might have expected. However, with the other information we received today, we think we are leaning towards at least giving this a shot.
As always, David was a very good boy today. He talked and smiled and only cried a little when they drew blood for lab work. He also loaded some diapers and did some push ups on the exam table to further impress the doctors and nurses.
We are so thankful to everyone for their prayers and support and we really feel the Lord’s leading at this time. We are seeing that it is true that God gives wisdom generously to those who ask. David is an excellent little boy and God has an excellent plan for his life. We also want to thank everyone for praying for our courage and strength during this process. We don’t know how we have strength now, but we do, and it must be because of our Strong Tower. Please continue to pray as we make a final decision and we will keep you posted. Pray because God is listening!
-Rob
Saturday, August 11, 2007
August 11, 2007
It has been a long two days.
We made it to the Eye Center at about 8:30am yesterday, and began the LLLLLOOOOONNNNNNNNGGGGGGGG process of checking in, dressing, medicating, and tagging David for his exam. They finally came to take him at about 10:45am. He did very very well during this whole process. He was cheerful or asleep the whole time. We were greatful for that since he had not been able to eat since about 4am. The procedure lasted a little more than an hour.
The doctor said that there was indeed a large tumor in David's right eye. No surprise there. He found his left eye to be clear and healthy, so that was positive. From the size, placement, etc. of the tumor, we have only two options. 1.) We can remove the eye and the tumor with it. This would pretty much get rid of the cancer as we see it now. There is no guarantee that David will not develop more tumors in his other eye or other places in the body, but it would get rid of this current tumor and likely be the end of it. 2.) We can do a 6 month round of chemotherapy with the goal of getting rid of the tumor or killing it (we aren't really sure what that means). If this works, David would get to keep his eye and the limited sight that it would provide. 20/400 or worse is what the doctor predicts.
We went from that meeting with the doctor over to have a CT scan done. The scan didn't show any spread of the tumor into the brain, so that was good.
Then we had to wait around for several hours in a recovery room until a hospital room became available in the main building. It was a long and uncomfortable process. Food was scarce since we weren't able to get to the cafeteria until after they had removed all the lunch selection. We did finally get a room. It was tiny and loud and uncomfortable, but all the nurses and staff were very kind and friendly and helpful. I didn't get much sleep last night, but when we got home today, all three of us were able to take a nice long nap.
We have a meeting on Monday with the Pediatric Oncologists to discuss the chemotherapy treatment in more depth so that we can make a more informed choice about David's treatment. We do know that before each round of chemo, David would have to go through the same process that he did yesterday in order to track the tumor's progress. They would implant a port in his chest to deliver the chemo so that they don't have to stick him with needles every time. We are also hoping to get a clearer picture of the financial end of all of this at that time too.
Rob and I are tired. This has been a very long two weeks, and the road ahead promises to be just as difficult. At times this all seems very real, and at times we can't believe it. As we try to see our way, it feels like we have 20/400 vision or worse. We do know that God has us in the palm of His hand, and that He is taking care of things that we won't ever know about.
So, now we are down to choices. At this point, we flip flop in between the two.
-Kim
We made it to the Eye Center at about 8:30am yesterday, and began the LLLLLOOOOONNNNNNNNGGGGGGGG process of checking in, dressing, medicating, and tagging David for his exam. They finally came to take him at about 10:45am. He did very very well during this whole process. He was cheerful or asleep the whole time. We were greatful for that since he had not been able to eat since about 4am. The procedure lasted a little more than an hour.
The doctor said that there was indeed a large tumor in David's right eye. No surprise there. He found his left eye to be clear and healthy, so that was positive. From the size, placement, etc. of the tumor, we have only two options. 1.) We can remove the eye and the tumor with it. This would pretty much get rid of the cancer as we see it now. There is no guarantee that David will not develop more tumors in his other eye or other places in the body, but it would get rid of this current tumor and likely be the end of it. 2.) We can do a 6 month round of chemotherapy with the goal of getting rid of the tumor or killing it (we aren't really sure what that means). If this works, David would get to keep his eye and the limited sight that it would provide. 20/400 or worse is what the doctor predicts.
We went from that meeting with the doctor over to have a CT scan done. The scan didn't show any spread of the tumor into the brain, so that was good.
Then we had to wait around for several hours in a recovery room until a hospital room became available in the main building. It was a long and uncomfortable process. Food was scarce since we weren't able to get to the cafeteria until after they had removed all the lunch selection. We did finally get a room. It was tiny and loud and uncomfortable, but all the nurses and staff were very kind and friendly and helpful. I didn't get much sleep last night, but when we got home today, all three of us were able to take a nice long nap.
We have a meeting on Monday with the Pediatric Oncologists to discuss the chemotherapy treatment in more depth so that we can make a more informed choice about David's treatment. We do know that before each round of chemo, David would have to go through the same process that he did yesterday in order to track the tumor's progress. They would implant a port in his chest to deliver the chemo so that they don't have to stick him with needles every time. We are also hoping to get a clearer picture of the financial end of all of this at that time too.
Rob and I are tired. This has been a very long two weeks, and the road ahead promises to be just as difficult. At times this all seems very real, and at times we can't believe it. As we try to see our way, it feels like we have 20/400 vision or worse. We do know that God has us in the palm of His hand, and that He is taking care of things that we won't ever know about.
So, now we are down to choices. At this point, we flip flop in between the two.
-Kim
Thursday, August 9, 2007
August 9, 2007
David and I got back yesterday from a short trip to visit with my parents in Waxhaw. It was nice to be able to be down there again. Hannah and Isaac love the freedom to play outdoors - even though the heat is extreme. They will stay until Sunday.
Grandma Goodall doted on David. She really enjoyed being able to have a little one around again. David did a fine job smiling and cooing at her. He even napped with her a little bit. I think they both enjoyed each other enormously, and it was sweet to watch.
I am still not sure what time we have to be in Raleigh tomorrow. I have to call at the end of the day to get the exact time. I don't look forward to enforcing the fast that they prescribed for David. You can't really reason with a 2 month old. I am hoping that his procedure will be early in the morning so that he will sleep most of the time leading up to it. We won't be getting home until Saturday sometime. I will update you all as soon as possible.
-Kim
Grandma Goodall doted on David. She really enjoyed being able to have a little one around again. David did a fine job smiling and cooing at her. He even napped with her a little bit. I think they both enjoyed each other enormously, and it was sweet to watch.
I am still not sure what time we have to be in Raleigh tomorrow. I have to call at the end of the day to get the exact time. I don't look forward to enforcing the fast that they prescribed for David. You can't really reason with a 2 month old. I am hoping that his procedure will be early in the morning so that he will sleep most of the time leading up to it. We won't be getting home until Saturday sometime. I will update you all as soon as possible.
-Kim
Friday, August 3, 2007
August 3, 2007
Today, we drove over to Duke University Eye Center. The center is huge and impressive. We met with a wonderful doctor and team of interns.
It was confirmed that David does indeed have a Retinoblastoma in his right eye. That's the bad news.
The good news is, it seems to be only one tumor in the right eye. His left eye appears to be perfectly healthy. It seems that the tumor has not spread outside of the eye. We also learned that the doctor who will continue David's care from this point forward is one of the premiere specialists in the care of this disease. We are also blessed that the hospital is so close to our house - only about an hour away. We most likely won't have to travel any significant distances to allow David to have the very best care.
The next step is:
David will be going back to the Eye Center next Friday (August 10) for a CT scan and an exam under anesthesia. This is so the doctor and oncologist can get a better feel of where the tumor is and take measurements. During the CT scan, they will also be making sure that the cancer has not spread. He will stay in the hospital overnight on Friday to make sure that he does not have any adverse reactions to the anesthesia. I think this is just a precaution since he is so young. After this, they will be able to advise us on what the best treatment options are.
Right now, we are just feeling overwhelmingly peaceful. Peaceful and sleepy. It was a long day, but more than ever, we sense that God is in control and we can rest. I have been singing a song in my head all day today. It comes Psalms. I know that it may be a very very long road ahead, but today, my heart is full of praise. Now, tell me that isn't a gift from God.
Come bless the Lord, all you servants of the Lord,
It was confirmed that David does indeed have a Retinoblastoma in his right eye. That's the bad news.
The good news is, it seems to be only one tumor in the right eye. His left eye appears to be perfectly healthy. It seems that the tumor has not spread outside of the eye. We also learned that the doctor who will continue David's care from this point forward is one of the premiere specialists in the care of this disease. We are also blessed that the hospital is so close to our house - only about an hour away. We most likely won't have to travel any significant distances to allow David to have the very best care.
The next step is:
David will be going back to the Eye Center next Friday (August 10) for a CT scan and an exam under anesthesia. This is so the doctor and oncologist can get a better feel of where the tumor is and take measurements. During the CT scan, they will also be making sure that the cancer has not spread. He will stay in the hospital overnight on Friday to make sure that he does not have any adverse reactions to the anesthesia. I think this is just a precaution since he is so young. After this, they will be able to advise us on what the best treatment options are.
Right now, we are just feeling overwhelmingly peaceful. Peaceful and sleepy. It was a long day, but more than ever, we sense that God is in control and we can rest. I have been singing a song in my head all day today. It comes Psalms. I know that it may be a very very long road ahead, but today, my heart is full of praise. Now, tell me that isn't a gift from God.
Come bless the Lord, all you servants of the Lord,
Who stand by night in the house of the Lord.
Lift up your hands in the holy place;
And bless the Lord, and bless the Lord.
(From Psalm 134)
-Kim
Thursday, August 2, 2007
Monday, July 30
This was the day that we were told about David's condition.
The Opthamologist found what he is 95% sure is a rare malignant cancer called Retinoblastoma in David's right eye. He immediately referred us to Duke Eye Center in Raleigh, NC. We will be going to Raleigh for our initial consultation with Dr. Sharron Freedman on Friday, August 3rd at 9:30am.
Right now, we don't really know what we are dealing with, but we hope that we will be able to have more answers soon. In the meantime, enjoy these pictures of David and his sister and brother.
With cool shades on.
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