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.
Thursday, August 23, 2012
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.
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