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...
