Jacob is doing really well with the radiation. He is a bit tired, but not too bad. Also his neck and head where they are doing the radiation feel a little like he has a sunburn there.
He is having to miss history everyday, but the teacher is working with us. If he has to take it again next year it doesn't really matter.
Becca is getting a little tired of going to doctors, but I got her a bag with things to do in it and that seems to be working. She was very happy, though, on Friday when the girls were home from school and she got to stay home with them and not go to the "zapping" doctor!
Thanks for all the prayers. Hopefully after this is done we can be done with all the tumor stuff.
Sunday, April 14, 2013
Wednesday, March 20, 2013
What's next
Well, Jacob's surgery went great. Before they took him back, the doctor told us all the plans of how they were going to have enough tissue after removing the tumor to sew Jacob back up. They were going to either take muscle from him shoulder or leg in order to cover the skull. This would require microsurgery to get blood to the skin graft and it was going to be a big process.
When the surgeon talked to us afterwards, he told us that the tumor had actually stretched the skin out in that area so they were able to move a muscle over a bit in his neck and use the skin already there to sew him up. The doctor said that it was the best possible scenario and seemed rather pleasantly surprised. The power of the Priesthood is amazing.
They put in a small titanium plate where the tumor punched through the skull, but it did not get through the outer membrane of the brain. The doctors are as sure as they can be that they got it all out.
Now, what comes next? Well, since the chemo didn't work, they don't want to put him back on that. They are going to do radiation instead. They didn't want to start with that because of the close proximity to the brain, but they now feel that it is the best choice. His new radiation doctor (yes, yet another doctor to add to the list) says that there is less than 5% chance that it could hurt his brain, and we need to do something to keep this tumor from coming back.
We are going to start radiation next Wednesday and it will be every week day for six weeks. I thought I was going to the doctor a lot before! We are going to try and rearrange his schedule at school to have PE first period since he isn't even going into the gym right now. Then we can just have him do the radiation then. I hope that works out because he can't miss every day of class for a month and a half!
Well, I think that gets everyone up to date. Thanks for your prayers.
When the surgeon talked to us afterwards, he told us that the tumor had actually stretched the skin out in that area so they were able to move a muscle over a bit in his neck and use the skin already there to sew him up. The doctor said that it was the best possible scenario and seemed rather pleasantly surprised. The power of the Priesthood is amazing.
They put in a small titanium plate where the tumor punched through the skull, but it did not get through the outer membrane of the brain. The doctors are as sure as they can be that they got it all out.
It was so great to have Scott's parents come help out. There's no way we could have gotten though this without them.
Jacob loved his pet visit.
He didn't really want me to put a picture of his cuts on facebook, but I knew you would be interested, so I put them here. I hope he doesn't mind too much.
We are going to start radiation next Wednesday and it will be every week day for six weeks. I thought I was going to the doctor a lot before! We are going to try and rearrange his schedule at school to have PE first period since he isn't even going into the gym right now. Then we can just have him do the radiation then. I hope that works out because he can't miss every day of class for a month and a half!
Well, I think that gets everyone up to date. Thanks for your prayers.
Tuesday, February 19, 2013
Latest MRI results
Jacob had an MRI on Friday and then a CT Scan this morning. The MRI showed that the desmoid tumor is still growing. (We already had a good idea of this because it felt bigger and it has been hurting him more lately.) Since the MRI doesn't show bone very well, they had him do a CT Scan. That showed that the tumor has eroded the bone completely in some areas and is now pushing on his brain. It doesn't appear to have penetrated the brain yet, but they don't know for sure.
The doctors want to remove it. He is going to be going into surgery next week. I don't have the exact date yet, but I will let you know.
The doctors want to remove it. He is going to be going into surgery next week. I don't have the exact date yet, but I will let you know.
Wednesday, January 30, 2013
Funny Story
On Elizabeth's first day of school, Scott got a very interesting call from the nurse. Her voice was filled with trepidation when she told Scott that Elizabeth got hurt at school. Apparently a little boy punched Elizabeth at recess. Then she went on to explain that he was playing a game in which he intended punch his hand in front of Elizabeth's face, but he forgot to put his hand up and got Elizabeth right in the nose. Once Scott started laughing hysterically, the nurse didn't feel so bad anymore. :-) Can you imagine that poor nurse having to call a little girl's dad on the first day of school to let him know his 2nd grader got punched in the nose?! That poor nurse. She assured Scott that the little boy was taken aside and told why that was not an appropriate game to play.
Other than that things in our new place are great. Sarah has a friend in her class that lives two doors down from us. The bus stop is right on the corner of our street so I don't have to pick up the kids from school. In the afternoon the kids go out to the front yard and play with all the neighbor kids. The ward seems to fit us well with lots of families our age. I love our house, but Scott doesn't like the small garage.
Thanks for all your prayers. It is great to have our family together again.
Other than that things in our new place are great. Sarah has a friend in her class that lives two doors down from us. The bus stop is right on the corner of our street so I don't have to pick up the kids from school. In the afternoon the kids go out to the front yard and play with all the neighbor kids. The ward seems to fit us well with lots of families our age. I love our house, but Scott doesn't like the small garage.
Thanks for all your prayers. It is great to have our family together again.
Thursday, November 29, 2012
MRI Results
We got the results back for Jacob's MRI. It showed that the tumor was actually larger than the last MRI. The doctor was surprised, but then she realized that the MRI taken last time was at the beginning of July and the chemo didn't start until the end of August so there was almost two months for it to grow before we started the treatments. With that taken into consideration, the chemo should be working for him just fine. We will know for sure with the next MRI in a few months. It is just going to take a while to get it gone, but at least he is handling it just fine. They could do a stronger chemo, but that would make him feel awful and loose his hair, so we'll just keep chugging along. :-)
Monday, November 19, 2012
More Blessings
Last Friday we had blessings rain down on our heads.
A little back story:
We got our house renovated through the city in 2010. This was a great thing because they spent $24,000 on our house and as long as we stayed in the house for five years, it would all be paid off. A little bit has been coming out each month, but we still owe about $12,000. It is in the form of a lean on our house.
Scott and I were trying to make plans to pay it off, but we couldn't figure out how we were going to pay it off as well as get a down payment for our new house. (Renting in Austin costs more than a house payment.) We still knew that our family was supposed to go to Austin and it would work out some way. I was pretty down, though, because I just couldn't see how it was ever going to happen, and I hate having Scott working in Austin and only coming home on the weekends. We are reading the D&C right now as a couple and at my lowest point we read section 58 that told me that "Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter." Talk about an answer to prayers.
Well, last Friday, Heavenly Father showed us a little more of how it is going to be possible. I had recently written a letter to the city trying to see if there was any way to make payments on the money we owe. She called me and told me that as long as the people that buy our home are within the income requirements, they can just transfer the lean over to the buyer. It will still continue to go down and be payed off in three years. With this, we don't have to pay the lean back at all! We can use the money we were planning on using for the lean to put a down payment on our house and also use some to pay the remainder of our current mortgage if we need to.
Our Realtor told us it might be hard to find someone willing to take over the lean even though they don't have to even pay anything for it, but we are going to use that as a bartering chip when they ask for us to lower our price. It may still take a while to find a buyer, but at least we can see that it is possible now. We lowered our asking price and have three people already coming this week to look at our house.
The lady from the city also told us there is a home buying assistance program in Arlington for people that meet the income requirements we need. It requires people to take a one day class on home buying and then they can have up to $10,000 for a down payment and closing costs. They have a Realtor representing them that I could call to let him know about our house. They would be more likely to transfer the lean because they know more about the renovation program that the house had. We may just be able to sell this house quickly! (I can't get too excited, though. I hate to get my hopes up.)
Also, on Friday, we got our pre-approval letter from Scott's new work for our new house contingent upon us selling our current house. We also got a list of Realtors in Austin that the credit union likes to use. If we use one of those Realtors they will give us 20% of the commission to go to closing costs.
We are going on Thanksgiving weekend to Austin. (My sister is visiting family in Las Vegas so we are taking over her house.) We are hoping to be able to put a bid on a house while we are there.
I would love to move over Christmas break, but I am trying my hardest to be on the Lord's schedule not my own.
Prayers are appreciated. You can see that they are working! Thank you all and we love you guys.
A little back story:
We got our house renovated through the city in 2010. This was a great thing because they spent $24,000 on our house and as long as we stayed in the house for five years, it would all be paid off. A little bit has been coming out each month, but we still owe about $12,000. It is in the form of a lean on our house.
Scott and I were trying to make plans to pay it off, but we couldn't figure out how we were going to pay it off as well as get a down payment for our new house. (Renting in Austin costs more than a house payment.) We still knew that our family was supposed to go to Austin and it would work out some way. I was pretty down, though, because I just couldn't see how it was ever going to happen, and I hate having Scott working in Austin and only coming home on the weekends. We are reading the D&C right now as a couple and at my lowest point we read section 58 that told me that "Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter." Talk about an answer to prayers.
Well, last Friday, Heavenly Father showed us a little more of how it is going to be possible. I had recently written a letter to the city trying to see if there was any way to make payments on the money we owe. She called me and told me that as long as the people that buy our home are within the income requirements, they can just transfer the lean over to the buyer. It will still continue to go down and be payed off in three years. With this, we don't have to pay the lean back at all! We can use the money we were planning on using for the lean to put a down payment on our house and also use some to pay the remainder of our current mortgage if we need to.
Our Realtor told us it might be hard to find someone willing to take over the lean even though they don't have to even pay anything for it, but we are going to use that as a bartering chip when they ask for us to lower our price. It may still take a while to find a buyer, but at least we can see that it is possible now. We lowered our asking price and have three people already coming this week to look at our house.
The lady from the city also told us there is a home buying assistance program in Arlington for people that meet the income requirements we need. It requires people to take a one day class on home buying and then they can have up to $10,000 for a down payment and closing costs. They have a Realtor representing them that I could call to let him know about our house. They would be more likely to transfer the lean because they know more about the renovation program that the house had. We may just be able to sell this house quickly! (I can't get too excited, though. I hate to get my hopes up.)
Also, on Friday, we got our pre-approval letter from Scott's new work for our new house contingent upon us selling our current house. We also got a list of Realtors in Austin that the credit union likes to use. If we use one of those Realtors they will give us 20% of the commission to go to closing costs.
We are going on Thanksgiving weekend to Austin. (My sister is visiting family in Las Vegas so we are taking over her house.) We are hoping to be able to put a bid on a house while we are there.
I would love to move over Christmas break, but I am trying my hardest to be on the Lord's schedule not my own.
Prayers are appreciated. You can see that they are working! Thank you all and we love you guys.
Sunday, November 4, 2012
Catch Up
Everything is going great here. Jacob does just fine with his chemo treatments every week. He is a little tired on Wednesday nights after getting the medication, but other than that he is his normal self. We will be getting an MRI on the 14th to see how effective it has been.
We have just been crazy busy getting ready to move. We are trying to sell our house and hopefully we can get what we owe on it. The realtor is coming by to take pictures tomorrow and get the house listed on the internet. Scott and I already signed all the paperwork on Friday. I really pray that the house sells quickly.
Scott starts his new job in Austin tomorrow. He is staying with my sister during the week and then coming home on the weekends. I really hate having our family separated, but we have to sell this house before the family can move. Any prayers would be appreciated.
The kids are all taking the move very calmly. We will see what happens when we actually have a date that we are going to move. Right now things are in limbo.
It will be interesting getting all the medical stuff transferred but Jacob's doctors assure me that it will be just fine and that Austin has great medical facilities.
We have just been crazy busy getting ready to move. We are trying to sell our house and hopefully we can get what we owe on it. The realtor is coming by to take pictures tomorrow and get the house listed on the internet. Scott and I already signed all the paperwork on Friday. I really pray that the house sells quickly.
Scott starts his new job in Austin tomorrow. He is staying with my sister during the week and then coming home on the weekends. I really hate having our family separated, but we have to sell this house before the family can move. Any prayers would be appreciated.
The kids are all taking the move very calmly. We will see what happens when we actually have a date that we are going to move. Right now things are in limbo.
It will be interesting getting all the medical stuff transferred but Jacob's doctors assure me that it will be just fine and that Austin has great medical facilities.
Friday, September 21, 2012
Becca's Results
Well, we met with the blood sugar doctor for Becca on Wednesday. He didn't really tell us anything new. He just said that Becca's blood sugar counts when she was in the hospital were at 51 (low is below 50) and usually seizures make it go up, so it must have been low when she had hers. He just told us to make sure she doesn't go 16 hours without eating, and if she had a stomach virus again, we need to take her to the hospital to give her fluids. He also said that as she gets older, we shouldn't need to worry about it as much.
She hasn't had any more seizures since then and she is not on any medication. Personally, I just think that her seizure threshold gets lowered when she gets sick. I hope that as she gets older, I won't have to worry about it as much, but until then, I will just keep her seizure stopping medicine handy whenever she is sick.
She hasn't had any more seizures since then and she is not on any medication. Personally, I just think that her seizure threshold gets lowered when she gets sick. I hope that as she gets older, I won't have to worry about it as much, but until then, I will just keep her seizure stopping medicine handy whenever she is sick.
Tuesday, September 11, 2012
Good News
At Jacob's late treatment the doctor measured the bump on his head and it had already shrunk a half a centimeter! She had told us before we started that if it hadn't grown in three months that would be good because that means it wasn't growing. She wasn't expecting it to shrink so quickly at all.
Jacob also hasn't been having any more headaches. I was really concerned that he would be suffering from pain as well as the chemo, but his pain is gone.
The pill camera results came back and everything looks great.
He is still battling fatigue and grumpyness, but it comes and goes. So far he has been able to keep up with school as far as I know. The worst part is that we have to spend an afternoon every week at the hospital, not getting home until 6:00 at the earliest. Then I have to pick up the girls (from the wonderful people that watch them), have dinner, and get homework done all before 7:30 or the kids are too tired the next day. Scott works Wednesday evenings, so I'm doing this all by myself. But, all in all, that's not so bad. And, the ward has been great in providing dinners for me on Wednesdays.
So, thank you all for your prayers and thoughts. We are really benefiting from them.
Jacob also hasn't been having any more headaches. I was really concerned that he would be suffering from pain as well as the chemo, but his pain is gone.
The pill camera results came back and everything looks great.
He is still battling fatigue and grumpyness, but it comes and goes. So far he has been able to keep up with school as far as I know. The worst part is that we have to spend an afternoon every week at the hospital, not getting home until 6:00 at the earliest. Then I have to pick up the girls (from the wonderful people that watch them), have dinner, and get homework done all before 7:30 or the kids are too tired the next day. Scott works Wednesday evenings, so I'm doing this all by myself. But, all in all, that's not so bad. And, the ward has been great in providing dinners for me on Wednesdays.
So, thank you all for your prayers and thoughts. We are really benefiting from them.
Saturday, September 1, 2012
Latest News
Jacob did the pill camera thing on Wednesday. All went well, and the camera came out in time for Jacob to be able to eat diner before he went to bed, so he was happy about that. I'm not sure when we will get the results from that.
He had his second chemotherapy treatment on Wednesday as well. We were able to get home an hour earlier, so that was nice. He seems to be tolerating it better this week. He isn't quite as tired as last week.
Everything seems to be going well at school. His teachers all know what is going on and are really helpful with making sure he is able to keep up with his work.
****Caution: Graphic Content****
The conversation that Jacob and I had when his pill camera came out:
Jacob: Mom, the camera came out!
Me: Are you sure?
Jacob: Yes, it was still blinking a blue light in the toilet and the monitor receiving the pictures turned off.
Me: I guess it was still taking pictures when it was in the toilet. Those must be interesting pictures.
Jacob: Ya, and it took pictures of me looking at it in the toliet!
Me: That must be an odd camera angle. :-)
He had his second chemotherapy treatment on Wednesday as well. We were able to get home an hour earlier, so that was nice. He seems to be tolerating it better this week. He isn't quite as tired as last week.
Everything seems to be going well at school. His teachers all know what is going on and are really helpful with making sure he is able to keep up with his work.
****Caution: Graphic Content****
The conversation that Jacob and I had when his pill camera came out:
Jacob: Mom, the camera came out!
Me: Are you sure?
Jacob: Yes, it was still blinking a blue light in the toilet and the monitor receiving the pictures turned off.
Me: I guess it was still taking pictures when it was in the toilet. Those must be interesting pictures.
Jacob: Ya, and it took pictures of me looking at it in the toliet!
Me: That must be an odd camera angle. :-)
Thursday, August 23, 2012
First Day of Chemo
Jacob had his first day of chemotherapy yesterday. He did great with it. It wasn't quite so easy for me, though. We got there at 2:50 and didn't leave until 6:15. I really, really needed get something to eat by the time we got out of there! First, we met with the oncologist. Then they took a long time explaining everything to him, which was really great. Then they put the IV into the port on his chest. He said it didn't hurt at all! Of course, they gave him an ipad to play with while they were doing it, so he didn't notice anything. :-) Then they took some blood and ordered his medicine from the pharmacy. It was 4:30 by the time this was all done. We then went across the hall to the infusion area where we waited for an hour to get his medicine. He didn't mind waiting at all because they had a wii for him to play on. Once he got the medicine, the actual chemo only took 20 minutes. Then the nurses had to take all the tape and such off of him and we got out at 6:15.
The worse part about this, besides my almost fainting from glucose imbalance, was that I told the people watching the girls that I was going to be home around 4:30. The doctor had told me that the infusion only took 20 minutes so I figured an hour and a half would be plenty of time, but apparently not. The people watching the girls didn't mind at all, but I just don't like to take advantage of them. They only live a half a block away from the girls' school, so Sarah and Elizabeth will walk there every Wednesday after school until I am done with Jacob's chemo. (I will drop Becca off earlier.) Hopefully, next time it won't take so long because we don't have to do the explaining part again.
The medicine doesn't seem to be affecting Jacob too much. He did sleep longer this morning and take a late morning nap. He also feels a little dizzy today. He doesn't feel nauseous at all, though, which is great. I'm worried about how he will do with school next week, but he feels confident that he will be ok.
The biopsies came back from his procedure last week. They said that they are consistent with his Gardner's Syndrome. They are going to still do the pill camera and he will be getting that next Wednesday before the next run of chemo.
The worse part about this, besides my almost fainting from glucose imbalance, was that I told the people watching the girls that I was going to be home around 4:30. The doctor had told me that the infusion only took 20 minutes so I figured an hour and a half would be plenty of time, but apparently not. The people watching the girls didn't mind at all, but I just don't like to take advantage of them. They only live a half a block away from the girls' school, so Sarah and Elizabeth will walk there every Wednesday after school until I am done with Jacob's chemo. (I will drop Becca off earlier.) Hopefully, next time it won't take so long because we don't have to do the explaining part again.
The medicine doesn't seem to be affecting Jacob too much. He did sleep longer this morning and take a late morning nap. He also feels a little dizzy today. He doesn't feel nauseous at all, though, which is great. I'm worried about how he will do with school next week, but he feels confident that he will be ok.
The biopsies came back from his procedure last week. They said that they are consistent with his Gardner's Syndrome. They are going to still do the pill camera and he will be getting that next Wednesday before the next run of chemo.
Thursday, August 16, 2012
School Registration
*Warning* Long, rambling entry just to voice frustration. Not medically pertinent.
Today I went to go get Jacob's schedule at Bailey Jr High. I was thinking that I would show my proof of address and they would give me his schedule. Boy was I wrong! We got in one line to get the check list for all the different stations. Then we got in another line to get paperwork. Then we got in a very long line to turn in that paperwork and get some more. While I was in that line, I looked over the check list. One of the items was immunizations. Oops, I did not bring his shot record. I never heard that he needed it. I only heard proof of residencey. I guess I wasn't listening closely enough. I found someone to ask while I was in line and they told me that I needed to have the shot record. So, we went home and got it. I also grabbed his birth certificate just in case. We went back and got into that long line again. When we got to the end of that line, we got to go to the nurse line. Jacob was getting more and more excited. He really wanted to get his schedule and find out where is locker was. We got to the end of that line at last and found out that Jacob didn't have all the shots he needed. We couldn't go any farther towards getting his schedule. The poor boy was devastated. I called up his regular doctor to get the shots, but he hasn't had a physical for a while (I've been busy with other doctor appointments) so they couldn't give him shots. I went to a health clinic and there was a three hour wait to get shots! Luckily, there was a shot clinic going on down the street. We stopped in at home for a quick snack and went on to the shot clinic. Right before I got to the nurse to get his shots I started wondering if the vaccinations would be bad with the chemo he is starting on Wednesday. The nurse said that three of the four he needed would be fine, but one she wasn't sure of. She gave him those three and then I called Jacob's chemo doctor about the other one. She said that he should just not get the shots. Well, we already got three of the four, but it was ok. (If I just would have told the nurse at Bailey he was starting chemo on Wednesday, we could have avoided all of this!) We went back to the school, got his schedule at last, and it had him having his hardest class last period. Since he is going to be having chemo once a week all year in the afternoon, that class was not the best to have at the end. We were able to get that fixed right there, which was very nice. He now has reading last. That shouldn't be a problem at all. :-) We then found all of his classrooms so he will be ready a week from Monday. This whole time he was still hurting and a bit weak from his surgery yesterday. We got home at about 3:30. It took six hours just to pick up a schedule! Then I took him back to Bailey at 4:30 for an AVID meeting. (He is soooo excited about AVID.) I'm beat. My poor girls had to be home all alone all day and then I come home and am grouchy, tired, and don't want to do anything but sit on the computer. Well, at least all bad days do come to an end eventually. :-)
Today I went to go get Jacob's schedule at Bailey Jr High. I was thinking that I would show my proof of address and they would give me his schedule. Boy was I wrong! We got in one line to get the check list for all the different stations. Then we got in another line to get paperwork. Then we got in a very long line to turn in that paperwork and get some more. While I was in that line, I looked over the check list. One of the items was immunizations. Oops, I did not bring his shot record. I never heard that he needed it. I only heard proof of residencey. I guess I wasn't listening closely enough. I found someone to ask while I was in line and they told me that I needed to have the shot record. So, we went home and got it. I also grabbed his birth certificate just in case. We went back and got into that long line again. When we got to the end of that line, we got to go to the nurse line. Jacob was getting more and more excited. He really wanted to get his schedule and find out where is locker was. We got to the end of that line at last and found out that Jacob didn't have all the shots he needed. We couldn't go any farther towards getting his schedule. The poor boy was devastated. I called up his regular doctor to get the shots, but he hasn't had a physical for a while (I've been busy with other doctor appointments) so they couldn't give him shots. I went to a health clinic and there was a three hour wait to get shots! Luckily, there was a shot clinic going on down the street. We stopped in at home for a quick snack and went on to the shot clinic. Right before I got to the nurse to get his shots I started wondering if the vaccinations would be bad with the chemo he is starting on Wednesday. The nurse said that three of the four he needed would be fine, but one she wasn't sure of. She gave him those three and then I called Jacob's chemo doctor about the other one. She said that he should just not get the shots. Well, we already got three of the four, but it was ok. (If I just would have told the nurse at Bailey he was starting chemo on Wednesday, we could have avoided all of this!) We went back to the school, got his schedule at last, and it had him having his hardest class last period. Since he is going to be having chemo once a week all year in the afternoon, that class was not the best to have at the end. We were able to get that fixed right there, which was very nice. He now has reading last. That shouldn't be a problem at all. :-) We then found all of his classrooms so he will be ready a week from Monday. This whole time he was still hurting and a bit weak from his surgery yesterday. We got home at about 3:30. It took six hours just to pick up a schedule! Then I took him back to Bailey at 4:30 for an AVID meeting. (He is soooo excited about AVID.) I'm beat. My poor girls had to be home all alone all day and then I come home and am grouchy, tired, and don't want to do anything but sit on the computer. Well, at least all bad days do come to an end eventually. :-)
Wednesday, August 15, 2012
All went well
Jacob went in for his colonoscopy and port insertion today. We got there about noon, and didn't have to wait very long for the anesthesiologist to come in. Jacob told him exactly how he wanted to have is medicine-- He does not like to have the mask. He likes the IV method so much better. He also does not like the "giggle juice" that they give to make him relax. Jacob has done this so much that he has no problem with nerves. The "giggle juice" makes it harder to wake up. The doctor just told him that Jacob could just take over his job! All the nurses were great with him. It only took two sticks for the IV, which for Jacob is great.
The port went in just fine. They put it in his chest on the left side so his whole left arm is a bit hard for him to move right now. It should be just fine in a day or so. For his colonoscopy, the doctor found 9 small polyps and removed them. He also found some inflammation in his stomach and beginning of his small intestines. That isn't normal with his syndrome so the he took some biopsies and we will know in a couple of weeks why that is. He thinks it could just be an infection that will be cured with antibiotics. (One thing always leads to another with that kid!) If the doctor needs to see more of the small intestine, Jacob will swallow a pill camera that will go all through him taking pictures. I thought that was pretty cool.
The first thing Jacob said to the nurse when he was waking up was that he was hungry. The nurse offered him some water, juice or a popsicle, but Jacob only wanted Del Taco. The nurse just couldn't get that for him for some reason. He wasn't able to eat anything from Monday night up until his procedures were done. For dinner he ate three Del Taco burritos! The nurses told me to take it slow with food when he got home, but I've learned from past experiences that boy can handle food just fine after surgery! He is still a bit sore and a little weak, but I'm sure even that will fade by tomorrow. He is a real trooper.
Thank you all for your prayers. They are felt.
The port went in just fine. They put it in his chest on the left side so his whole left arm is a bit hard for him to move right now. It should be just fine in a day or so. For his colonoscopy, the doctor found 9 small polyps and removed them. He also found some inflammation in his stomach and beginning of his small intestines. That isn't normal with his syndrome so the he took some biopsies and we will know in a couple of weeks why that is. He thinks it could just be an infection that will be cured with antibiotics. (One thing always leads to another with that kid!) If the doctor needs to see more of the small intestine, Jacob will swallow a pill camera that will go all through him taking pictures. I thought that was pretty cool.
The first thing Jacob said to the nurse when he was waking up was that he was hungry. The nurse offered him some water, juice or a popsicle, but Jacob only wanted Del Taco. The nurse just couldn't get that for him for some reason. He wasn't able to eat anything from Monday night up until his procedures were done. For dinner he ate three Del Taco burritos! The nurses told me to take it slow with food when he got home, but I've learned from past experiences that boy can handle food just fine after surgery! He is still a bit sore and a little weak, but I'm sure even that will fade by tomorrow. He is a real trooper.
Thank you all for your prayers. They are felt.
Tuesday, August 14, 2012
Becca's EEG came back normal. She will meet with the neurologist on the 12th of September. (Scott told me that I should also mention that Becca liked having pictures taken during her EEG so that she could see what she looked like. I took the picture to try and make her happy.)
Jacob goes in for his colonoscopy and port insertion tomorrow at 1:30. We were hoping for earlier so that the poor boy could eat sooner, but that is the time we got. I'll let you know how it goes.
Jacob goes in for his colonoscopy and port insertion tomorrow at 1:30. We were hoping for earlier so that the poor boy could eat sooner, but that is the time we got. I'll let you know how it goes.
Wednesday, August 8, 2012
Becca Update
Her appointment with the blood sugar doctor to see if low blood sugar is causing the seizures is on September 19th.
Jacob Condition Overview
Jacob has had bumps on his head since he was about 12 month old. He had them removed when he was 5 and then again when he was 10. In October of last year, a bump came back and it was growing fast. By the time we got him to the doctor in January, it was hurting him really bad. The doctor looked at the bump and scheduled him for an operation two days later. The mass was about the size of a golf ball. When the doctor was done with the operation, he came and told us that the growth wasn't growing into the bone, so he didn't think it was cancer, but it had eroded the bone a bit by pushing into it. No wonder it had been hurting him.
The results of the biopsy came back and said that the mass is what's called a desmoid tumor. It is not cancerous, but they tend to come back and be really annoying. We met with an oncologist and she said that these types of tumors are very rare, but they can be signs of another syndrome called Gardner's Syndrome. She sent us to a geneticist to see if that was the case with Jacob. (He also had extra teeth that was another sign.) The tests that were required usually cost thousands of dollars and our insurance normally wouldn't cover it. Scott and I decided that it needed to be done no matter what and we would figure it out. The geneticist was really great, though, and fought with our insurance and the whole thing was covered. We are really blessed.
Well, the tests came back and he had a mutation in the APC gene. (I told him that if he was going to be a mutant, he might as well walk through walls or something cool like that :-) This mutation means that he has familial andenomatous polyposis (FAP) or more commonly known as Gardner's Syndrome. The biggest problem with this syndrome is colon cancer. In fact, the lifetime risk to develop colon cancer is 100% without intervention. The interventions he will have will be a colonoscopy every year. If the polyps become too bad, he will have to have a colectomy (the geneticist said that from the position of mutation on the gene there is a high chance that he will have a colectomy in his teen years.) He met with a Gastric Intestinal doctor in July and his first colonoscopy will be on Wednesday, August 15th. We will know more after that is done.
Meanwhile, the oncologist also ordered MRIs every six months to check on the desmoid tumors to make sure they aren't coming back. The MRI in July showed that the tumor is back. Since surgery is just not keeping it gone, the oncologist wants him to have chemotherapy. At this time she told us that there was a 50% chance of it getting rid of the desmoid.
Scott and I went to the temple the Friday following that appointment. I was very unsure of whether or not I wanted to expose my poor little boy to chemo or not. There have been people in my ward and neighborhood that have had to have it recently and it made them so miserable. I really didn't want him to have to do that, but I also knew that surgery just wasn't working. He does really well with surgeries, but if it doesn't work, why keep doing it? Also, 50% just didn't seem like very good odds for all the misery that I anticipated him having to go through. It was just like tossing a coin. At the temple, the tossing the coin image kept coming into my mind. Then I imagined the Savior catching the coin mid-toss and making the coin land on the side it was supposed to land on. 50% chance seemed to be much better odds to me then. My son in is the hands of the Lord and things will happen the way they are supposed to happen, but we have to actually toss the coin.
This last Monday, we met with the oncologist again. She changed to say that there is a 70% chance that the chemo will get rid of it (don't know why it changed.) The dosage he will get will be very small so it shouldn't make him loose his hair or make him too nauseous. The medicine can be in increments of 20 to 300 and he will have 30. This really shouldn't make him miserable or affect his life too greatly. He will have the therapy every week for six months and then every two weeks after that (not sure for how long.) We are able to get his appointments in the afternoon so he shouldn't miss too much school. I'm also arranging it so that he will not have PE. They will put a port in his chest when he has the colonoscopy on Wednesday. This will allow them to not have to put in an IV every week. He will still be able to go swimming and everything just like normal. He will start the chemo on the 22nd. I hope it works a quickly as possible because the tumor is causing poor kid a lot of pain right now.
When we found out about all this back in March, Scott gave Jacob a blessing. I was hoping for a blessing saying, "You are healed!," but that was not the way things are meant to be. Instead he was blessed that he will still be able to have the normal things in life. This condition will not prevent him from going on a mission or having a family. He was also blessed that he will remain cheerful through his adversities. (There is a 50% chance that he will pass this gene on to his kids. Scott and I were both tested and do not have this mutation. Jacob really is a mutant :-)
Well, that pretty much brings things up to date.
The results of the biopsy came back and said that the mass is what's called a desmoid tumor. It is not cancerous, but they tend to come back and be really annoying. We met with an oncologist and she said that these types of tumors are very rare, but they can be signs of another syndrome called Gardner's Syndrome. She sent us to a geneticist to see if that was the case with Jacob. (He also had extra teeth that was another sign.) The tests that were required usually cost thousands of dollars and our insurance normally wouldn't cover it. Scott and I decided that it needed to be done no matter what and we would figure it out. The geneticist was really great, though, and fought with our insurance and the whole thing was covered. We are really blessed.
Well, the tests came back and he had a mutation in the APC gene. (I told him that if he was going to be a mutant, he might as well walk through walls or something cool like that :-) This mutation means that he has familial andenomatous polyposis (FAP) or more commonly known as Gardner's Syndrome. The biggest problem with this syndrome is colon cancer. In fact, the lifetime risk to develop colon cancer is 100% without intervention. The interventions he will have will be a colonoscopy every year. If the polyps become too bad, he will have to have a colectomy (the geneticist said that from the position of mutation on the gene there is a high chance that he will have a colectomy in his teen years.) He met with a Gastric Intestinal doctor in July and his first colonoscopy will be on Wednesday, August 15th. We will know more after that is done.
Meanwhile, the oncologist also ordered MRIs every six months to check on the desmoid tumors to make sure they aren't coming back. The MRI in July showed that the tumor is back. Since surgery is just not keeping it gone, the oncologist wants him to have chemotherapy. At this time she told us that there was a 50% chance of it getting rid of the desmoid.
Scott and I went to the temple the Friday following that appointment. I was very unsure of whether or not I wanted to expose my poor little boy to chemo or not. There have been people in my ward and neighborhood that have had to have it recently and it made them so miserable. I really didn't want him to have to do that, but I also knew that surgery just wasn't working. He does really well with surgeries, but if it doesn't work, why keep doing it? Also, 50% just didn't seem like very good odds for all the misery that I anticipated him having to go through. It was just like tossing a coin. At the temple, the tossing the coin image kept coming into my mind. Then I imagined the Savior catching the coin mid-toss and making the coin land on the side it was supposed to land on. 50% chance seemed to be much better odds to me then. My son in is the hands of the Lord and things will happen the way they are supposed to happen, but we have to actually toss the coin.
This last Monday, we met with the oncologist again. She changed to say that there is a 70% chance that the chemo will get rid of it (don't know why it changed.) The dosage he will get will be very small so it shouldn't make him loose his hair or make him too nauseous. The medicine can be in increments of 20 to 300 and he will have 30. This really shouldn't make him miserable or affect his life too greatly. He will have the therapy every week for six months and then every two weeks after that (not sure for how long.) We are able to get his appointments in the afternoon so he shouldn't miss too much school. I'm also arranging it so that he will not have PE. They will put a port in his chest when he has the colonoscopy on Wednesday. This will allow them to not have to put in an IV every week. He will still be able to go swimming and everything just like normal. He will start the chemo on the 22nd. I hope it works a quickly as possible because the tumor is causing poor kid a lot of pain right now.
When we found out about all this back in March, Scott gave Jacob a blessing. I was hoping for a blessing saying, "You are healed!," but that was not the way things are meant to be. Instead he was blessed that he will still be able to have the normal things in life. This condition will not prevent him from going on a mission or having a family. He was also blessed that he will remain cheerful through his adversities. (There is a 50% chance that he will pass this gene on to his kids. Scott and I were both tested and do not have this mutation. Jacob really is a mutant :-)
Well, that pretty much brings things up to date.
Wednesday, October 19, 2011
Wedding Cake Topper
I just recently made a wedding cake and topper that turned out pretty good. The cake was only passable, but I really liked how the topper turned out and a lot of other people liked it, too. I wonder if I could sell these?
Monday, July 5, 2010
Wednesday, June 30, 2010
Gibbons Reunion 2010
Here are some scrapbook pages from the 2010 Gibbons reunion. It was a lot of fun. We all went to Arizona where the Gibbons clan originated. We got to see all the sites of where they grew up. I know I need to label all of them by name, but I will get to that on a later page.
I need another scrapbooker's opinion on the swimming page. Does having the water in the background make it so the pictures don't stand out enough? I lowered the opacity, but I'm still not sure about it.
Everything is not in order, sorry.
Monday, April 26, 2010
Fun April Pics
Just thought I would give a brief showing of our April events:
We got a new puppy named, Samantha.
We had fun at Chuck E Cheese's
Our flowers are blooming!
Puppy fun.
I went to the zoo with Elizabeth's class
More puppy fun
Boy, she looks a lot smaller when she is wet!
Cute girl
Look at the happy couple with their new little one!
Becca got a shiner when her eye connected with the chair.
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