At this months appointment they found that the tumor has shrunk more and the amount of seeds have decreased!!
Allie's had nausea and lethargic after the previous treatments but they changed a few things and did much better.
There's another appointment set for next month.
Continued prayer that the tumor and seeds would go away completely.
Friday, November 11, 2011
Wednesday, October 12, 2011
Allie, The Continuing Story... October
This week my mom, sister Amanda and niece Allie headed back to New York on Monday.
Tuesday Allie had her check up with the doctor who said that her tumor has shrunk by more than half!!
Today, Wednesday, Allie had her second direct chemo treatment and it went well.
As a quick recap.
-Allie was diagnosed August 23rd, 2011 with retinoblastoma
-She is being treated by 1 of only 5 doctors in the US that specializes in retinoblastoma. (Located in New York)
-She is receiving chemo directly into the tumor inside of her eye. If every treatment goes well she should have no side effects as you with systemic chemo.
-Her first treatment was September 15th, 2011.
Tuesday Allie had her check up with the doctor who said that her tumor has shrunk by more than half!!
Today, Wednesday, Allie had her second direct chemo treatment and it went well.
As a quick recap.
-Allie was diagnosed August 23rd, 2011 with retinoblastoma
-She is being treated by 1 of only 5 doctors in the US that specializes in retinoblastoma. (Located in New York)
-She is receiving chemo directly into the tumor inside of her eye. If every treatment goes well she should have no side effects as you with systemic chemo.
-Her first treatment was September 15th, 2011.
Wednesday, September 21, 2011
The Story of Allie
I've been keeping this story up on my facebook page however since I keep my facebook page pretty private I thought I would publish it here and also keep up the updates for the rest of the world to see.
This is copied and pasted from my Note on facebook.
For those who have been wondering here's the overview of what's happening with my niece.
People involved.
My parents Gerald and Millie
My oldest sister Amanda
Amanda's girls Sammie(6), Allie(almost 5) and Eva(2 1/2)
Wes, the girls' father
Me, Margaret
(I'll add more as more come in)
Saturday August 13th, 2011
While at the movies Amanda noticed that she could see light reflecting out of Allie's right eye. After the movie was over Amanda tried to look into Allie's eye but didn't see the reflecting light as earlier.
Tuesday August 16th, 2011
Margaret noticed throughout the day that she could see Allie's eye reflecting light but shrugged it off. Continued to notice the rest of the week.
Saturday August 20th, 2011
Amanda makes an appointment for the following Monday at the optometrist
Monday August 22nd, 2011
Dr. diagnoses Allie with a detached retina and cataract. Says it needs to be taken care of as quickly as possible. Made appointment for Allie to see the specialist the next day.
Tuesday August 23rd, 2011
Dr. didn't see any cataract or retina detachment but he saw a tumor and called it cancer. Retinoblastoma. Made appointment for her to see Dr. Mary Hartnett in Salt Lake City on Wednesday the following week. This appointment was about 2 hours long. Towards the end Allie was restless and they agreed to end it and let the SLC doctor take the measurement and additional tests.
Wednesday August 24th, 2011
Margaret watched girls in the afternoon. Allie's pupils were huge. You can't look in her right eye without seeing reflections. Mentions it to Millie when she picks up the girls at 5;00pm.
9:45pm Amanda says that Allie's pupils were still dilated and the reflection is getting bigger. Amanda, Margaret and Millie agree that the referring eye center should be called first thing in the morning and that Allie needs to get to Salt Lake ASAP.
I, (Margaret), took a flashlight into the bedroom and asked Allie if I could look at her eye. I flashed her back and forth with the light but got no reaction.
Allie: What's in my eye and what are they going to do?
Me: Well, you know how you get green boogers in your eyes sometimes?
Allie: and my nose.
Me: yes. Well, it's kind of like that. You have a booger on the inside of your eye. And what they are going to do is come up behind that booger inside your eye and say "FREEZE" and it will freeze. And then when it's all frozen they'll grab that booger and pull it out.
Allie: Oh (she said with uncertain concern)
Me: They're going to need to do extra tests so they know right where that booger is. So, when you're at the doctor's office and they need you to do something they're going to tell you to "freeze!" (I freeze and don't move). Then they'll say that you can move again (I start to wiggle). Then they might need to do another test and they'll say "freeze!" (I freeze). And then you can move again. Let's practice.
(We go through a couple rounds of wiggling and freezing)
Me: Now Allie, it's very important that when it comes time for them to freeze that booger you do what they say. What's going to happen is you're going to get on a little skinny bed, even smaller than your bed. And they're going to take your arm and start tapping on it and poking it with they're fingers. This is the part where you need to freeze and remember that even though it tickles you can only smile but don't laugh.
You know what rubber bands are?
Allie: Yes.
Me: Well they're going to have a BIG rubber band except that this one won't be a circle, this one will be like a string rubber band. They're going to take it and tie it around your arm really tight!
Allie: Like this tight? (grabs my arm with both hands and squeezes are hard as she can)
Me: Yes, just like that. It's going to hurt but not too bad. But you can't wiggle, you have to freeze! (freeze again)
Now when your mom is sewing she uses pins to hold the fabric together and a needle to sew. Well the doctor is going to have a needle with a hole in it that will have medicine in it.
Allie: Medicine!?! (Eyes wide with amazement)
Me: Yes. So, you're laying on the skinny bed, not wiggling, you have the big rubber band tied around your arm and then they're going to start tapping on your arm again.
Allie: And I'll remember not to giggle or move.
Me: That's right. This is the most important part to not wiggle at. They're going to take the needle with the medicine in it and do a quick poke (poke sound effect) and then they'll tape it to your arm. The best part about when they put the medicine needle in is when they take that rubber band off.
(Allie smiles and gives a giggle)
Me: They might ask you to count backwards or frontwards. Or they might ask you to know all your cousins or sisters. And remember to take big deep breaths when you say them, "Sammie" (big breath), "Eva" (big breath) (I go through all the kids).
And it's while you're asleep that the doctor is going to go in and tell that booger to "FREEZE!" (Freeze again)
Now Allie, this is the most important part of the whole thing. When you wake up they will probably have put an eye patch on your eye so you won't be able to see out of it. It's super important that you remember as soon as you wake up your first words need to be "ARR!!" just like a pirate because you have an eye patch on.
Allie: (Laughs) I'm really good at talking like a pirate. "Arrr matey" "Shiver me timbers"
Me: And don't forget to say "aye" because that will be a play on words because you just had your "eye" worked on.
(We had a precious little conversation about Jesus and angels watching over children while doctors worked on them)
Me: Goodnight Allie, I love you.
Allie: I love you very much Aunt Margaret
Thursday August 25th, 2011
Amanda talked to the doctor who dilated Allie's eyes. He said they had to use very strong drops and take 24-48 hours to wear off, maybe up to a week. Allie's pupils were looking smaller by the afternoon.
Friday August 26th, 2011
My mom and Amanda took Allie to have a treatment in a hyperbaric chamber which could shrink her tumor. It was a struggle but Allie made it through the hour long treatment.
Wednesday August 31st, 2011
1:30pm Appointment.
Doctor looked at Allie's and said it doesn't look good. They'll need to do an MRI and and an ultrasound.
They have another appointment at 5:00pm to discuss they're options. While in the waiting room Amanda and Wes could hear the staff talking about it and said they would need to schedule surgery. We need more prayer.
7:25pm
Met with the doctor at 5pm.
The good news is that the MRI machine is in the surgery room so when they said they would need to schedule the surgery they were just talking about reserving the room for the purpose of MRI!
They've scheduled more tests at 11am Thursday. They plan to sedate Allie and call in another specialist to look over the results. They also learned from the doctor that the other procedures for removing the tumor would likely have to be done in a more specialized clinic located in a different state.
Thursday September 1st, 2011
9:15am
This is from Amanda's facebook post this morning.
"Yeterday the doctor kept insisting that when they said surgery, it was only because they were planning to do the exam in the OR because that is where they would take her once sedated. The nurse practitioner confirmed to me this morning that they have her scheduled for the exam AND surgery."
They've moved up the appointment to 10:00am.
I don't know what's going to happen.
12:30pm
Allie's sedated and in the MRI. It will take 45 minutes.
3:30pm
Went over tests and they wanted to remove the eye right then. Amanda declined, will search for more options, better surgeon.
Allie is waking up. I think they plan to come home tonight.
Friday September 2nd, 2011
Good news at last!
Memorial Sloan-Kettering Cancer Center is the best at treating retinoblastoma. Amanda made an appointment for Allie for this coming Tuesday the 6th at 9am. Their standard process of patient care is they test on Tuesday and treat on Wednesday.
For the Tuesday appointment they will review her case and then sedate and examine the eye. For real examine to the point of almost taking it out and looking at it all over. They said that the eye will usually be itchy for a couple hours after examination.
On Wednesday they would sedate again and inject chemotherapy directly into the tumor. Since the eye isn't in the standard circulatory system the chemo would stay in the eye and not go through the rest of her body, giving her none of the side effects of standard chemo treatments. In some cases the eye is red for a couple days.
They will repeat the the above process once a month until the tumor is gone. The average is 4 treatments, the most they've ever done is 9.
The center is located in New York, New York. Mom, Amanda and Allie will fly out on Monday.
Extra info.
At the first eye appointment with the first optometrist they discovered that Allie has 80/20 vision in her affected eye. I never remember which side is which so I asked Amanda if she had super vision or awful vision, it's the awful one. What the average person can see at 80 feet Allie can see it at 20 feet. I don't know that removing the tumor will improve that but at least she will still be able to see.
Retinoblastoma is one of the most rare types of cancer. There are about 350 cases a year. There are only 5 specialists for retinoblastoma in the country, and a handful of others who also do the procedure. New York, Florida, Philidelphia (has 2), and LA.
Tuesday September 6th, 2011
10:45a
The doctor has examined Allie's eye while she was sedated. Confirmed that the tumor is filling 1/3 of her eye. The new twist is that "seeds" have broken off. The seeds may escape her eye and cause problems for the rest of her body. They said that removing the eye wouldn't be a bad option but they could try the chemo. Amanda opted to try the chemo. Another appointment has been set for 2:30p (12:30p MST) with the chemo therapist.
Allie needs to eat and drink before she can leave the office.
9:10pm
This is copied from Amanda's status:
"Met with the doctor today. He said it is definitely retinoblastoma, and they did cryotherapy over the eye. We are tentatively scheduled for tomorrow. Waiting for one more authorization to come through. They have about 20 kids here this week with retinoblastoma. Talked to a few other parents with nothing but good things to say about the treatment and people.
Pray for Allie to have peace. She is completely freaked out. No amount of explaining, hugging, or bribing has calmed her down."
Tonight while I was praying with all the little girls I prayed that the tumor would go away and the little seeds.
Sam: Seeds?
Me: Yeah... The booger in Allie's eye broke off so we need to pray that those little pieces go away too.
Sam gives a confused look.
Me: It's like little baby boogers.
Sam: Oh. I should have known that booger was a girl and was pregnant. I should have known.
Thursday September 8th, 2011
The paper work has not been completed yet. The doctor who would administer the chemo will be out of town until Tuesday. Mom, Amanda and Allie were already planning on being on the east coast until Sunday for my cousin's wedding so they've gone ahead and left for Rhode Island to stay with the father of the bride, my mom's youngest brother, and then to Boston area for the wedding this weekend.
When the paper work is completed the hospital will schedule Allie's chemo treatment (looks like Tuesday?).
Monday September 12th, 2011
Amanda got a call today from hospital from admissions. They don't have all the paper work done yet. We'll see.
They all had a good time at the wedding and Allie enjoyed spending time with her little Massachusetts cousins.
Today Sammie prayed with Eva just before nap time:
"Our dear Heavenly Father, please be with Allie and get that booger out of her eye real fast, before Friday. In Jesus name, Amen. Oh and let Eva have good dreams when she sleeps."
.
Tuesday September 13th, 2011
I wish there was more to post.
I'm really not sure where the hold up is. My understanding is everyone is ready to do this but it's caught up in the hospital insurance paperwork acceptance.
Tomorrow they plan to go to hospital in person and find out what's going on.
.
Wednesday September 14th, 2011
Victory! Paperwork is done. Treatment is scheduled for 8am tomorrow morning!
.
Thursday September 15th, 2011
My day in texts: (Time in MST)
7:31am Waiting our turn. Preparation stuff is done.
7:34am We expect 7 hours: 1 prep, 1 surgery, 5 recovery
(I asked how Allie was doing)
7:37am Doing well. More cooperative and interactive today. Receptionist gave her birthday present.
7:51am Doctor just spoke with us in waiting room. Allie will go in for treatment in about 15 minutes.
8:39am Amanda is just taking Allie to the treatment area. They told us to expect to be here for 8 hours starting now.
9:36am Assistant just came and reported to us that they are injecting chemotherapy now. Allie is doing fine.
10:16am Procedure done. Applying pressure to artery for 30 minutes.
11:29am In recovery now. After maybe 30 minutes of fight Allie is quiet and watching a movie.
12:41pm Allie has eaten 3 chicken tenders and had some water with no signs of nausea. (A previous reaction to the anethesia) She is brightly interactive with the nurse. The staff people here just brought her a birthday present.
Friday September 16th into Saturday the 17th, 2011
They left New York on time and landed in Dallas for a one hour lay over, which ended up being more like 4 due to thunderstorms. They landed in Salt Lake at 12:38am and spent the night at my sister Sarah's house and arrived home today at 1:00pm.
Sammie, Eva, Arwen (my daughter) and I thought it would be fun to surprise Allie, Amanda and my mom with a "Happy Birthday/Welcome home" party. It was going to be a much bigger bash at 9:00am when they were supposed to be home but at 1:00pm it was a nice little homecoming.
I can't decide if I should end this note and start a new one or continue on... I think I'll just keep this going. There will be fewer updates in between appointments. I believe Allie will have a check up with our local doctor this week or next.
Tuesday September 20th, 2011
Sammie, Eva, Amanda and Wes all need to have their eyes checked for any signs of retinoblastoma. Today Sammie and Eva were checked out and were given a clean bill of eye health. It's been recommended that they get yearly checks just to be sure.
Our next steps/what we know
We're praying for complete healing for Allie.
Planning a fund raiser to off set the travel and medical costs.
Wait for next appointment.
More to come...
This is copied and pasted from my Note on facebook.
For those who have been wondering here's the overview of what's happening with my niece.
People involved.
My parents Gerald and Millie
My oldest sister Amanda
Amanda's girls Sammie(6), Allie(almost 5) and Eva(2 1/2)
Wes, the girls' father
Me, Margaret
(I'll add more as more come in)
Saturday August 13th, 2011
While at the movies Amanda noticed that she could see light reflecting out of Allie's right eye. After the movie was over Amanda tried to look into Allie's eye but didn't see the reflecting light as earlier.
Tuesday August 16th, 2011
Margaret noticed throughout the day that she could see Allie's eye reflecting light but shrugged it off. Continued to notice the rest of the week.
Saturday August 20th, 2011
Amanda makes an appointment for the following Monday at the optometrist
Monday August 22nd, 2011
Dr. diagnoses Allie with a detached retina and cataract. Says it needs to be taken care of as quickly as possible. Made appointment for Allie to see the specialist the next day.
Tuesday August 23rd, 2011
Dr. didn't see any cataract or retina detachment but he saw a tumor and called it cancer. Retinoblastoma. Made appointment for her to see Dr. Mary Hartnett in Salt Lake City on Wednesday the following week. This appointment was about 2 hours long. Towards the end Allie was restless and they agreed to end it and let the SLC doctor take the measurement and additional tests.
Wednesday August 24th, 2011
Margaret watched girls in the afternoon. Allie's pupils were huge. You can't look in her right eye without seeing reflections. Mentions it to Millie when she picks up the girls at 5;00pm.
9:45pm Amanda says that Allie's pupils were still dilated and the reflection is getting bigger. Amanda, Margaret and Millie agree that the referring eye center should be called first thing in the morning and that Allie needs to get to Salt Lake ASAP.
I, (Margaret), took a flashlight into the bedroom and asked Allie if I could look at her eye. I flashed her back and forth with the light but got no reaction.
Allie: What's in my eye and what are they going to do?
Me: Well, you know how you get green boogers in your eyes sometimes?
Allie: and my nose.
Me: yes. Well, it's kind of like that. You have a booger on the inside of your eye. And what they are going to do is come up behind that booger inside your eye and say "FREEZE" and it will freeze. And then when it's all frozen they'll grab that booger and pull it out.
Allie: Oh (she said with uncertain concern)
Me: They're going to need to do extra tests so they know right where that booger is. So, when you're at the doctor's office and they need you to do something they're going to tell you to "freeze!" (I freeze and don't move). Then they'll say that you can move again (I start to wiggle). Then they might need to do another test and they'll say "freeze!" (I freeze). And then you can move again. Let's practice.
(We go through a couple rounds of wiggling and freezing)
Me: Now Allie, it's very important that when it comes time for them to freeze that booger you do what they say. What's going to happen is you're going to get on a little skinny bed, even smaller than your bed. And they're going to take your arm and start tapping on it and poking it with they're fingers. This is the part where you need to freeze and remember that even though it tickles you can only smile but don't laugh.
You know what rubber bands are?
Allie: Yes.
Me: Well they're going to have a BIG rubber band except that this one won't be a circle, this one will be like a string rubber band. They're going to take it and tie it around your arm really tight!
Allie: Like this tight? (grabs my arm with both hands and squeezes are hard as she can)
Me: Yes, just like that. It's going to hurt but not too bad. But you can't wiggle, you have to freeze! (freeze again)
Now when your mom is sewing she uses pins to hold the fabric together and a needle to sew. Well the doctor is going to have a needle with a hole in it that will have medicine in it.
Allie: Medicine!?! (Eyes wide with amazement)
Me: Yes. So, you're laying on the skinny bed, not wiggling, you have the big rubber band tied around your arm and then they're going to start tapping on your arm again.
Allie: And I'll remember not to giggle or move.
Me: That's right. This is the most important part to not wiggle at. They're going to take the needle with the medicine in it and do a quick poke (poke sound effect) and then they'll tape it to your arm. The best part about when they put the medicine needle in is when they take that rubber band off.
(Allie smiles and gives a giggle)
Me: They might ask you to count backwards or frontwards. Or they might ask you to know all your cousins or sisters. And remember to take big deep breaths when you say them, "Sammie" (big breath), "Eva" (big breath) (I go through all the kids).
And it's while you're asleep that the doctor is going to go in and tell that booger to "FREEZE!" (Freeze again)
Now Allie, this is the most important part of the whole thing. When you wake up they will probably have put an eye patch on your eye so you won't be able to see out of it. It's super important that you remember as soon as you wake up your first words need to be "ARR!!" just like a pirate because you have an eye patch on.
Allie: (Laughs) I'm really good at talking like a pirate. "Arrr matey" "Shiver me timbers"
Me: And don't forget to say "aye" because that will be a play on words because you just had your "eye" worked on.
(We had a precious little conversation about Jesus and angels watching over children while doctors worked on them)
Me: Goodnight Allie, I love you.
Allie: I love you very much Aunt Margaret
Thursday August 25th, 2011
Amanda talked to the doctor who dilated Allie's eyes. He said they had to use very strong drops and take 24-48 hours to wear off, maybe up to a week. Allie's pupils were looking smaller by the afternoon.
Friday August 26th, 2011
My mom and Amanda took Allie to have a treatment in a hyperbaric chamber which could shrink her tumor. It was a struggle but Allie made it through the hour long treatment.
Wednesday August 31st, 2011
1:30pm Appointment.
Doctor looked at Allie's and said it doesn't look good. They'll need to do an MRI and and an ultrasound.
They have another appointment at 5:00pm to discuss they're options. While in the waiting room Amanda and Wes could hear the staff talking about it and said they would need to schedule surgery. We need more prayer.
7:25pm
Met with the doctor at 5pm.
The good news is that the MRI machine is in the surgery room so when they said they would need to schedule the surgery they were just talking about reserving the room for the purpose of MRI!
They've scheduled more tests at 11am Thursday. They plan to sedate Allie and call in another specialist to look over the results. They also learned from the doctor that the other procedures for removing the tumor would likely have to be done in a more specialized clinic located in a different state.
Thursday September 1st, 2011
9:15am
This is from Amanda's facebook post this morning.
"Yeterday the doctor kept insisting that when they said surgery, it was only because they were planning to do the exam in the OR because that is where they would take her once sedated. The nurse practitioner confirmed to me this morning that they have her scheduled for the exam AND surgery."
They've moved up the appointment to 10:00am.
I don't know what's going to happen.
12:30pm
Allie's sedated and in the MRI. It will take 45 minutes.
3:30pm
Went over tests and they wanted to remove the eye right then. Amanda declined, will search for more options, better surgeon.
Allie is waking up. I think they plan to come home tonight.
Friday September 2nd, 2011
Good news at last!
Memorial Sloan-Kettering Cancer Center is the best at treating retinoblastoma. Amanda made an appointment for Allie for this coming Tuesday the 6th at 9am. Their standard process of patient care is they test on Tuesday and treat on Wednesday.
For the Tuesday appointment they will review her case and then sedate and examine the eye. For real examine to the point of almost taking it out and looking at it all over. They said that the eye will usually be itchy for a couple hours after examination.
On Wednesday they would sedate again and inject chemotherapy directly into the tumor. Since the eye isn't in the standard circulatory system the chemo would stay in the eye and not go through the rest of her body, giving her none of the side effects of standard chemo treatments. In some cases the eye is red for a couple days.
They will repeat the the above process once a month until the tumor is gone. The average is 4 treatments, the most they've ever done is 9.
The center is located in New York, New York. Mom, Amanda and Allie will fly out on Monday.
Extra info.
At the first eye appointment with the first optometrist they discovered that Allie has 80/20 vision in her affected eye. I never remember which side is which so I asked Amanda if she had super vision or awful vision, it's the awful one. What the average person can see at 80 feet Allie can see it at 20 feet. I don't know that removing the tumor will improve that but at least she will still be able to see.
Retinoblastoma is one of the most rare types of cancer. There are about 350 cases a year. There are only 5 specialists for retinoblastoma in the country, and a handful of others who also do the procedure. New York, Florida, Philidelphia (has 2), and LA.
Tuesday September 6th, 2011
10:45a
The doctor has examined Allie's eye while she was sedated. Confirmed that the tumor is filling 1/3 of her eye. The new twist is that "seeds" have broken off. The seeds may escape her eye and cause problems for the rest of her body. They said that removing the eye wouldn't be a bad option but they could try the chemo. Amanda opted to try the chemo. Another appointment has been set for 2:30p (12:30p MST) with the chemo therapist.
Allie needs to eat and drink before she can leave the office.
9:10pm
This is copied from Amanda's status:
"Met with the doctor today. He said it is definitely retinoblastoma, and they did cryotherapy over the eye. We are tentatively scheduled for tomorrow. Waiting for one more authorization to come through. They have about 20 kids here this week with retinoblastoma. Talked to a few other parents with nothing but good things to say about the treatment and people.
Pray for Allie to have peace. She is completely freaked out. No amount of explaining, hugging, or bribing has calmed her down."
Tonight while I was praying with all the little girls I prayed that the tumor would go away and the little seeds.
Sam: Seeds?
Me: Yeah... The booger in Allie's eye broke off so we need to pray that those little pieces go away too.
Sam gives a confused look.
Me: It's like little baby boogers.
Sam: Oh. I should have known that booger was a girl and was pregnant. I should have known.
Thursday September 8th, 2011
The paper work has not been completed yet. The doctor who would administer the chemo will be out of town until Tuesday. Mom, Amanda and Allie were already planning on being on the east coast until Sunday for my cousin's wedding so they've gone ahead and left for Rhode Island to stay with the father of the bride, my mom's youngest brother, and then to Boston area for the wedding this weekend.
When the paper work is completed the hospital will schedule Allie's chemo treatment (looks like Tuesday?).
Monday September 12th, 2011
Amanda got a call today from hospital from admissions. They don't have all the paper work done yet. We'll see.
They all had a good time at the wedding and Allie enjoyed spending time with her little Massachusetts cousins.
Today Sammie prayed with Eva just before nap time:
"Our dear Heavenly Father, please be with Allie and get that booger out of her eye real fast, before Friday. In Jesus name, Amen. Oh and let Eva have good dreams when she sleeps."
.
Tuesday September 13th, 2011
I wish there was more to post.
I'm really not sure where the hold up is. My understanding is everyone is ready to do this but it's caught up in the hospital insurance paperwork acceptance.
Tomorrow they plan to go to hospital in person and find out what's going on.
.
Wednesday September 14th, 2011
Victory! Paperwork is done. Treatment is scheduled for 8am tomorrow morning!
.
Thursday September 15th, 2011
My day in texts: (Time in MST)
7:31am Waiting our turn. Preparation stuff is done.
7:34am We expect 7 hours: 1 prep, 1 surgery, 5 recovery
(I asked how Allie was doing)
7:37am Doing well. More cooperative and interactive today. Receptionist gave her birthday present.
7:51am Doctor just spoke with us in waiting room. Allie will go in for treatment in about 15 minutes.
8:39am Amanda is just taking Allie to the treatment area. They told us to expect to be here for 8 hours starting now.
9:36am Assistant just came and reported to us that they are injecting chemotherapy now. Allie is doing fine.
10:16am Procedure done. Applying pressure to artery for 30 minutes.
11:29am In recovery now. After maybe 30 minutes of fight Allie is quiet and watching a movie.
12:41pm Allie has eaten 3 chicken tenders and had some water with no signs of nausea. (A previous reaction to the anethesia) She is brightly interactive with the nurse. The staff people here just brought her a birthday present.
Friday September 16th into Saturday the 17th, 2011
They left New York on time and landed in Dallas for a one hour lay over, which ended up being more like 4 due to thunderstorms. They landed in Salt Lake at 12:38am and spent the night at my sister Sarah's house and arrived home today at 1:00pm.
Sammie, Eva, Arwen (my daughter) and I thought it would be fun to surprise Allie, Amanda and my mom with a "Happy Birthday/Welcome home" party. It was going to be a much bigger bash at 9:00am when they were supposed to be home but at 1:00pm it was a nice little homecoming.
I can't decide if I should end this note and start a new one or continue on... I think I'll just keep this going. There will be fewer updates in between appointments. I believe Allie will have a check up with our local doctor this week or next.
Tuesday September 20th, 2011
Sammie, Eva, Amanda and Wes all need to have their eyes checked for any signs of retinoblastoma. Today Sammie and Eva were checked out and were given a clean bill of eye health. It's been recommended that they get yearly checks just to be sure.
Our next steps/what we know
We're praying for complete healing for Allie.
Planning a fund raiser to off set the travel and medical costs.
Wait for next appointment.
More to come...
Friday, December 10, 2010
One, two, skip a few...
Well it's been quite a while since my last post and a lot has happened. I get overwhelmed reading long blog posts so I'll fill in the year with a bunch of posts.
...Birth
I finished babysitting at the end of April. It was an odd feeling waking up Monday morning to no alarm and no kids at my door. More odd than that is it continued the rest of the week. It welcomed and much needed break.
I had noticed Braxton-Hicks contractions around 16 weeks so I was used to some discomfort during the day and night but on...
Sunday May 23rd (38 weeks), about 1:00am I started having some pretty strong contractions. I was able to sleep through most of them but they were pretty persistent. Chris said he could hear me moaning off and on all night. We decided to go to church though the contractions had been about 4 minutes apart the whole night and early morning. During the first service (while serving in the Children's Lobby) I called my midwife to let her know what was happening. At the end of the service we decided it would be best to drop off Arwen at my mom's house, eat some lunch and go for a walk. Called the midwife and let her know.
Went to my favorite place of the trimester, Ruby Tuesday, where the contractions went to 50 seconds long and 2 minutes apart. Midwives on their way (60 minute drive).
On the ride home the contractions became stronger and I was anxious to get home. Within minutes of stepping foot in the door the contractions slowed down and went from too intense to eh. The midwives arrived and nothing was really happening. Since I didn't get much sleep I was encouraged to take a nap and see what happens. Slept for about an hour and a half. They checked blood pressure, heart rate and baby's heart rate, both resting and during a contraction. Everything was fine. Checked dilation, 2cm. They offered sweep my membranes to see if things could get started up again and I said no we'd just let the little guy come when he was ready. We called it a false alarm and I apologized, "we'd rather come every day of the week for a false alarm then miss the baby."
Tuesday May 26th.
Mostly regular day but in the late afternoon the strong contractions came back. My mom watched Arwen and Chris and I went to walk around the mall. It was pretty tough to walk through the contractions which seemed to be fading in and out of intensity but never really going away so they were difficult to time.
I had given the midwife a heads up but I really didn't feel like this was it.
Once again when I got home the contractions pretty much stopped and I was still pregnant.
Monday May 31st, Arwen and I were outside playing and she started to go down the slide. I hadn't noticed her at the top and I ran to catch her only to trip and fall on top of her. My hips were already sore but the fall made it worse.
Wednesday June 2nd. I woke up with my new standard of stronger Braxton-Hicks and I really felt like I should get my bookkeeping done for my parents before my usual time on Friday. Mom was willing to watch Arwen while I cooked the books. Those pesky contractions were getting more annoying but if I followed the pattern that I had with Arwen the baby would be another week. There were a few deposits to make and I asked my mom if she would watch Arwen a little longer and I would run to the bank and stop by the chiropractor in the hopes of fixing my aching hips.
200pm. I walked in and was greeted by Dr. Lee's welcoming smile. I told him my hips hurt and that I was due in 3 days but we had 2 false alarms already. "Well, we'll hit a couple points and see what happens. I'll give you the 30 minute special." The adjustment was great my hips hadn't felt that good in a year. Within seconds my contractions kicked into high gear. I just breathed through them because I knew it was another false alarm. He massaged the "contraction inducing" pressure points and sure enough they were working. I still knew it was a false alarm.
I went through the drive thru at Taco Time (my other favorite place this pregnancy) breathing the best I could with contractions. I called Chris to let him know how I was doing and he asked if it was time for him to come home. I said no because it was just a false alarm and my contractions were always worse in the car. Made it to the bank and was almost in tears. I called the midwife and told her my status and that I hadn't timed anything yet but I would when I got home.
Crying, I called Chris and he said he would pack up the crew and get home.
I got home and was so upset about it being another false alarm but frustrated that the contractions weren't going away or getting any better. My midwife called to check on me and I told her I was 50 seconds long and 2 minutes apart but I couldn't tell if it was the real thing or not. She said she would go to her next appointment and then call me again. I was already putting the stew ingredients into the crock-pot, just in case the baby did come. 3 minutes after we got off the phone my midwife called again and said she would just cancel her appointment and come right down. I was so relieved that someone else made the decision for me. Chris got home about an hour after I called him and the midwives 30 minutes after him. I was still in denial about labor. Kathy (head midwife) timed a few contractions and told Vallery (midwife apprentice) "this looks good. We're staying."
7:45pm I felt that switch from "I can manage this." to "things are speeding up now and I can't handle it!!" We moved to the bedroom and I tried pushing even though it didn't feel quite right. They checked me and I was so close to 10cm they said if I could do a couple contractions it would probably finish and my water would break and baby would come. Sure enough, my water broke in a few minutes. Midwife: "oh there it is... Margaret you need to get up we need to get baby out right now!" I sat up to look and my water was green with meconium.
Panic! "Is he alright?! Is he alright?!" 'Yes Margaret baby's fine but needs to come out right now."
After trying at least 4 positions we found one where baby had good heart tones. I pushed for what seemed like forever and then James Gordon was born.
5 and half hours after my chiropractic adjustment he was born. I also only pushed for 30 minutes, it must have been that 30 minute special he was talking about. Hooray for chiropractors!
The funny thing was, the week before I had a dream that he was born but he came out looking at me. Yeah he was born face up.
I love homebirth.
I love my midwives.
I love my chiropractor.
I love my son.
And most of all I love my husband. Thanks babe for our beautiful children and your loving support.
...Birth
I finished babysitting at the end of April. It was an odd feeling waking up Monday morning to no alarm and no kids at my door. More odd than that is it continued the rest of the week. It welcomed and much needed break.
I had noticed Braxton-Hicks contractions around 16 weeks so I was used to some discomfort during the day and night but on...
Sunday May 23rd (38 weeks), about 1:00am I started having some pretty strong contractions. I was able to sleep through most of them but they were pretty persistent. Chris said he could hear me moaning off and on all night. We decided to go to church though the contractions had been about 4 minutes apart the whole night and early morning. During the first service (while serving in the Children's Lobby) I called my midwife to let her know what was happening. At the end of the service we decided it would be best to drop off Arwen at my mom's house, eat some lunch and go for a walk. Called the midwife and let her know.
Went to my favorite place of the trimester, Ruby Tuesday, where the contractions went to 50 seconds long and 2 minutes apart. Midwives on their way (60 minute drive).
On the ride home the contractions became stronger and I was anxious to get home. Within minutes of stepping foot in the door the contractions slowed down and went from too intense to eh. The midwives arrived and nothing was really happening. Since I didn't get much sleep I was encouraged to take a nap and see what happens. Slept for about an hour and a half. They checked blood pressure, heart rate and baby's heart rate, both resting and during a contraction. Everything was fine. Checked dilation, 2cm. They offered sweep my membranes to see if things could get started up again and I said no we'd just let the little guy come when he was ready. We called it a false alarm and I apologized, "we'd rather come every day of the week for a false alarm then miss the baby."
Tuesday May 26th.
Mostly regular day but in the late afternoon the strong contractions came back. My mom watched Arwen and Chris and I went to walk around the mall. It was pretty tough to walk through the contractions which seemed to be fading in and out of intensity but never really going away so they were difficult to time.
I had given the midwife a heads up but I really didn't feel like this was it.
Once again when I got home the contractions pretty much stopped and I was still pregnant.
Monday May 31st, Arwen and I were outside playing and she started to go down the slide. I hadn't noticed her at the top and I ran to catch her only to trip and fall on top of her. My hips were already sore but the fall made it worse.
Wednesday June 2nd. I woke up with my new standard of stronger Braxton-Hicks and I really felt like I should get my bookkeeping done for my parents before my usual time on Friday. Mom was willing to watch Arwen while I cooked the books. Those pesky contractions were getting more annoying but if I followed the pattern that I had with Arwen the baby would be another week. There were a few deposits to make and I asked my mom if she would watch Arwen a little longer and I would run to the bank and stop by the chiropractor in the hopes of fixing my aching hips.
200pm. I walked in and was greeted by Dr. Lee's welcoming smile. I told him my hips hurt and that I was due in 3 days but we had 2 false alarms already. "Well, we'll hit a couple points and see what happens. I'll give you the 30 minute special." The adjustment was great my hips hadn't felt that good in a year. Within seconds my contractions kicked into high gear. I just breathed through them because I knew it was another false alarm. He massaged the "contraction inducing" pressure points and sure enough they were working. I still knew it was a false alarm.
I went through the drive thru at Taco Time (my other favorite place this pregnancy) breathing the best I could with contractions. I called Chris to let him know how I was doing and he asked if it was time for him to come home. I said no because it was just a false alarm and my contractions were always worse in the car. Made it to the bank and was almost in tears. I called the midwife and told her my status and that I hadn't timed anything yet but I would when I got home.
Crying, I called Chris and he said he would pack up the crew and get home.
I got home and was so upset about it being another false alarm but frustrated that the contractions weren't going away or getting any better. My midwife called to check on me and I told her I was 50 seconds long and 2 minutes apart but I couldn't tell if it was the real thing or not. She said she would go to her next appointment and then call me again. I was already putting the stew ingredients into the crock-pot, just in case the baby did come. 3 minutes after we got off the phone my midwife called again and said she would just cancel her appointment and come right down. I was so relieved that someone else made the decision for me. Chris got home about an hour after I called him and the midwives 30 minutes after him. I was still in denial about labor. Kathy (head midwife) timed a few contractions and told Vallery (midwife apprentice) "this looks good. We're staying."
7:45pm I felt that switch from "I can manage this." to "things are speeding up now and I can't handle it!!" We moved to the bedroom and I tried pushing even though it didn't feel quite right. They checked me and I was so close to 10cm they said if I could do a couple contractions it would probably finish and my water would break and baby would come. Sure enough, my water broke in a few minutes. Midwife: "oh there it is... Margaret you need to get up we need to get baby out right now!" I sat up to look and my water was green with meconium.
Panic! "Is he alright?! Is he alright?!" 'Yes Margaret baby's fine but needs to come out right now."
After trying at least 4 positions we found one where baby had good heart tones. I pushed for what seemed like forever and then James Gordon was born.
5 and half hours after my chiropractic adjustment he was born. I also only pushed for 30 minutes, it must have been that 30 minute special he was talking about. Hooray for chiropractors!
The funny thing was, the week before I had a dream that he was born but he came out looking at me. Yeah he was born face up.
I love homebirth.
I love my midwives.
I love my chiropractor.
I love my son.
And most of all I love my husband. Thanks babe for our beautiful children and your loving support.
Saturday, February 13, 2010
Basket Case
I've been emotional these days. I'll end up crying almost every other day which is a little bit higher than my usual twice a year. It's the weirdest things that set me off too. I mean if it were something I could predict I would just avoid those situations. But no, there is no reason for my tears. Around New Years I was a wreck because the store didn't have Johnson Original sausage links. A few weeks ago we had to skip a trip to the store because I couldn't stop crying over a Personal Pan Pepperoni pizza from Pizza Hut, (I wanted one but wasn't able to have one).
You could try and guess that the culprit was food but you'd be wrong. I'll almost everytime Arwen is throwing a long fit, if the gas tank isn't full, if I can't go back to sleep after Chris' alarm goes off. I don't remember being this teary with Arwen. Maybe it's because this one is a boy.
I think I'm really just worn out. Chris and I start our vacation on Tuesday and have plans to really finish unpacking. I've really dreaded coming home being surrounded my boxes, piles of laundry and dishes. I think if there was just one or two items to tackle it would be ok but they stack up on eachother. There are boxes in the kitchen which makes doing the dishes a real chore. Boxes in our bedroom so it's difficult to put laundry away. And boxes by the washer and dryer.
I know the solution and that it will get better, mostly I just wanted to moan and complain to the great void that is cyberspace.
Good night dear void.
You could try and guess that the culprit was food but you'd be wrong. I'll almost everytime Arwen is throwing a long fit, if the gas tank isn't full, if I can't go back to sleep after Chris' alarm goes off. I don't remember being this teary with Arwen. Maybe it's because this one is a boy.
I think I'm really just worn out. Chris and I start our vacation on Tuesday and have plans to really finish unpacking. I've really dreaded coming home being surrounded my boxes, piles of laundry and dishes. I think if there was just one or two items to tackle it would be ok but they stack up on eachother. There are boxes in the kitchen which makes doing the dishes a real chore. Boxes in our bedroom so it's difficult to put laundry away. And boxes by the washer and dryer.
I know the solution and that it will get better, mostly I just wanted to moan and complain to the great void that is cyberspace.
Good night dear void.
Monday, January 11, 2010
And the winner is...
It's a boy!!!!
We had our ultrasound and our son was not shy about letting us know what he was.
We had our ultrasound and our son was not shy about letting us know what he was.
Tuesday, January 5, 2010
Anticipation
I find myself in excited anticipation for tax season.
I've been a little edgy about finances since we found out we were expecting. We're doing fine but I had to stop my debt snowball to pay my midwife. You need to understand that I'm a super geek and only paying the minimum is driving me crazy! With selling our house and new tax laws it's questionable if we'll get a return. I would rather come out even than have to pay more.
As soon as our W-2's come in I have a date with Turbo Tax!
I've been a little edgy about finances since we found out we were expecting. We're doing fine but I had to stop my debt snowball to pay my midwife. You need to understand that I'm a super geek and only paying the minimum is driving me crazy! With selling our house and new tax laws it's questionable if we'll get a return. I would rather come out even than have to pay more.
As soon as our W-2's come in I have a date with Turbo Tax!
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