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Update on Reese.

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goldenrod
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Update on Reese.

Postby goldenrod » Wed May 25, 2016 4:44 pm

I know not all of you know me or my daughter who is now 4 1/2 years old and has been fighting a rare brain cancer (anaplastic ependymoma grade 3) since she was 17 months old. She has had 4 brain surgeries in Sioux falls, and then we did 4 months of IV chemo at St Jude in Memphis TN, 30 rounds of proton beam radiation in Jacksonville FL cause at the time there was only 6 machines in the usa and that's the facility that st jude was connected with but since then st jude has a machine to do it, and then 6 months of oral chemo which we got to do at home in Sioux falls. Since then things were looking good until our trip this week to Memphis for her checkups. Also there is no cure or remission for her type of cancer so we are always worried when we go back for scans which is every 3 months. I copied this next part from my wife's Facebook page.



Update: Our appointments at St. Jude are over for this trip but we will be returning in August for more appointments and to get more answers and a plan. Unfortunately on Reese's scans on Monday they found a new area of concern on her spine between her c4 & c5. There is a new growth that has never been on any imaging in the past 3 years. They are very concerned that she has had a reoccurrence but to be sure they want to see her again in 2 months. Well, since Reese's baby brother will be joining our family around then they postponed it a couple more weeks. At this time we don't know much more information other than we are scared, anxious, worried and fearful. We have always known this could happen but of course always hoped it wouldn't. We plan to make the next couple of months as good as we can for our family as we will plan for the worst but will hope and pray for the best. If it is a true reoccurrence then she will do some type of treatment, we just don't know what that will entail at this time. We are still trying to process everything but we appreciate all the support.
Last edited by goldenrod on Wed May 25, 2016 4:44 pm, edited 2 times in total.
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bmyoungs
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Update on Reese.

Postby bmyoungs » Wed May 25, 2016 6:35 pm

Very sorry to hear that Jason. I can't imagine how you and your wife must feel. I wish the best for Reese and your family.
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Tyler
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Update on Reese.

Postby Tyler » Wed May 25, 2016 6:44 pm

Best case scenario it's just an irregular vein?
Jocelyn and I want to take a mini-vacation to Minneapolis this summer and get a hotel room for a couple of nights. Maybe you and the family can do that too as a way to keep your mind off things.
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goldenrod
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Update on Reese.

Postby goldenrod » Wed May 25, 2016 6:56 pm

Tyler wrote:Best case scenario it's just an irregular vein?
Jocelyn and I want to take a mini-vacation to Minneapolis this summer and get a hotel room for a couple of nights. Maybe you and the family can do that too as a way to keep your mind off things.

That's just a scenario he threw out to us, St Jude has 3 mri machines and I guess the are updating them. Reese was in the new updated machine that has more power than the other 2 so it shows more, he looked back at the last 3 years of scans and this is the 1st time they have seen this spot so it could of been there the whole time. I know when we have done MRIs in Sioux falls and sent the images to St Jude they don't show as much as St Jude's machines. This week is Reese's 3 year anniversary as to when we found her tumor. I still remember getting a hold of you guys and telling you I couldn't go to your bachelor party in Chicago cause shit hit the fan. But anyways we have been doing checkups in Memphis every 3 months and we just got switched to every 4 months plus we were going to remove her port today but that didn't happen and we were feeling pretty good about getting switched to the new time frame for checkups. We want to do a mini vacation with the kids this summer but not sure if we will have much time the girls are in softball tournaments almost every weekend of June and a couple in July plus Marilyn is having a baby shower sometime before baby is born. With all of that we will be busy and that will help keep things off our minds.
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Update on Reese.

Postby wags83 » Wed May 25, 2016 11:09 pm

Hoping and praying for the best. Let us know if you need anything.
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Erin
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Update on Reese.

Postby Erin » Thu May 26, 2016 8:49 am

So sorry to hear this. You and your family are in my thoughts and prayers.
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Tyler
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Update on Reese.

Postby Tyler » Thu May 26, 2016 9:30 am

If you don't feel like sharing you can ignore this post, but I have some general questions about cancer, surgery and treatment since my exposure to sick people has been fortunately pretty limited.

What is the goal of cancer surgery? To remove all/as much as the cancer cells as possible?
Does chemo happen before or after this? What is the goal of chemo? To fight the cancer cells and kill them or stop them from spreading?
From my Breaking Bad knowledge, remission is when the cancel cells stop growing or even start dying?

It's possible then to physically remove the cancer growth with surgery, but that doesn't mean you are in the clear unless your cancer is in remission? I assume some types of cancers just need surgery or chemo, not both?
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Update on Reese.

Postby goldenrod » Thu May 26, 2016 10:19 am

The goal is gross total resection for surgery which means leaving no part of the tumor. Your best bet for post treatment is to get rid of as much of the tumor as possible. Even with grt there will still be microscopic cells left behind which is why you do chemo and or radiation. That is supposed to kill the remaining cells. Every cancer is different, like leukemia there isn't surgery cause it's a blood cancer. Some tumors they will do chemo 1st to try to shrink the tumor so it's an easier surgery. Some times the tumors are inoperable because of location. With reese our surgeon was able to get out the whole tumor. Remission is when they can't detect any cancer cells in your system, leukemia is 1 type of cancer that goes into remission cause they can test for cancer cells. In Reese's case they can't test for cancer cells so we do MRIs to check for new growth. The reason why reese will never be in remission is cause they can't test for actually cancer cells. Before all of this I thought chemo was chemo I never realized that there are so many types of chemo. The sad part with chemo is that most of them were created for adults, in the last 21 years they haven't created a new chemo for pediatrics. So all the chemo reese took was intended for adults. With radiation I know there are a few types but I only know info about standard radiation and proton beam radiation which is what we did for Reese since it doesn't scatter as bad as traditional radiation. Proton pin points it a little better but even with that it did scatter some and that is why she is losing some hearing. Crazy thing is they said some of the side effects won't hit her for 5 or more years plus all the effects from the chemo. With a lot of cancers they have a plan for treatment and know how to battle it but unfortunately with Reese's cancer there is no set treatment and what works for 1 kid doesn't work with another. Reese is actually on a trial to hopefully help battle her type of cancer. Scary part with Reese's cancer is that there is a 5 year survival rate and they consider that a success.
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Tyler
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Update on Reese.

Postby Tyler » Thu May 26, 2016 10:35 am

Thanks for taking the time to explain all that. I knew each situation was different, but that helps me understand how all the different things factor into it.
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bmyoungs
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Update on Reese.

Postby bmyoungs » Thu May 26, 2016 11:46 am

Thanks for the explanation jayson. I knew Reese's situation was tricky, but I didn't realize 5 years was considered a success. That's so scary.
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Tyler
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Update on Reese.

Postby Tyler » Wed Aug 24, 2016 2:18 pm

From Marilyn's Facebook:
Today is a very big day for Reese. We ask that you pray again for her during surgery, recovery and acceptance that her "buddy" (her port) will no longer be a part of her. This was placed in the very beginning of her journey when she was 19 months old and has been there through it all. She got medicine, chemotherapy, sedation and blood draws through her port. She is a little sad and we are always nervous during any surgery but we know this is a big step for her!
................
I hope everything went well!
Is this the trip where they are doing more scans to make sure the thing found a few months back isn't a concern?
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Tyler
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Update on Reese.

Postby Tyler » Wed Aug 24, 2016 2:32 pm

Jayson just texted me. I'll let him give the official update.

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goldenrod
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Update on Reese.

Postby goldenrod » Wed Aug 24, 2016 3:00 pm

Thanks man. We are heading home tomorrow. It was an awesome trip. The spot they saw on her spine back in may wasn't there anymore so they think it might of just been an imaging error. With that not being a concern they decided to take out Reese's port which is a huge step for her. She was kind of sad about it tho since she has had it since she was 19 months old. Now we just have to come back every 6 months for her mri to make sure nothing new is growing and the old spot on her brain that they have been watching for almost 3 years isn't doing anything. Also they will check to see if she has any other deficits due to the chemo or radiation.
Last edited by goldenrod on Wed Aug 24, 2016 3:00 pm, edited 1 time in total.
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wags83
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Update on Reese.

Postby wags83 » Wed Aug 24, 2016 3:04 pm

WOOOOOO!!!! That's great to hear!
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megatron
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Update on Reese.

Postby megatron » Wed Aug 24, 2016 8:45 pm

That's so amazing! Congratulations!
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cwilkins88
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Update on Reese.

Postby cwilkins88 » Wed Aug 24, 2016 8:47 pm

This is fantastic
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Tyler
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Update on Reese.

Postby Tyler » Wed Aug 24, 2016 8:48 pm

So happy for you guys! I hope you didn't spend the last few months worrying yourselves sick
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goldenrod
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Update on Reese.

Postby goldenrod » Wed Aug 24, 2016 8:52 pm

This was actually the 1st time I had a sick feeling in my stomach when we came down here. The spot on her brain has never worried me cause it never changes but when they saw the spot on her spine last time it made me sick since it was something new on her. We feel a huge relief now even tho we still don't know what the future holds for Reese. Thanks everyone.
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bmyoungs
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Update on Reese.

Postby bmyoungs » Wed Aug 24, 2016 9:47 pm

So happy for you guys. That's amazing news
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Erin
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Update on Reese.

Postby Erin » Thu Aug 25, 2016 8:19 am

Yeay! Great news indeed!!

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