Author Topic: About Braeden, NEW NEW info (Read 7422 times)

Esther · « **on:** August 10, 2008, 07:16:32 PM »

I am sick to my stomach to tell you what is in the latest update that Dawn wrote for Braeden's Care Pages:

Updating to let everyone know what's going on... this is the update we didn't want to ever do.
Last Wednesday Braeden had his MIBG (nuc) and CT scans. Thursday night we got "the" call from Dr. Axtell. His scans showed a new tumor. It is in the same place as the original tumor, the left adrenal gland (right by the left kidney). Monday morning Braeden will have a bone marrow aspirate and biopsy and Thursday he will have a bone scan to determine if the cancer has spread anywhere else. Once they have the whole picture, they will start working on a treatment plan for him. At this time we just don't know a whole lot beyond the fact that it's back. We will keep you all updated as quickly as possible, and of course we appreciate your prayers for Braeden, our family, and our team at DeVos.

Joyce · « **Reply #1 on:** August 10, 2008, 07:18:37 PM »

:'( ***PRAYERS!!!! *** :'(

Kittyzee · « **Reply #2 on:** August 10, 2008, 07:28:41 PM »

Standfast Esther, it's all you can do as we surround you and your family with PRAYERS AND HEALING! :'(

Bartman · « **Reply #3 on:** August 10, 2008, 07:33:44 PM »

:'(

I hope things go well.

Bart

miguynmkoi · « **Reply #4 on:** August 10, 2008, 07:55:38 PM »

Absolutely you have all our prayers for Braeden and his whole family. Be strong, be well.

Jonna · « **Reply #5 on:** August 10, 2008, 08:03:55 PM »

What a hard road, I'm so sorry. All any of us have in this world is love and you are surrounded with love. Just hold on and lean if you need to. Sending love and healing to you and your family.

Indiana Karen · « **Reply #6 on:** August 10, 2008, 08:12:58 PM »

Oh Esther, I am so sorry.
I remember telling you about our good friend's son who found out he had cancer at about the same time as Braeden. His is back too. So very sad. I will be thinking about you.

Karen

livetogarden · « **Reply #7 on:** August 10, 2008, 10:45:08 PM »

Esther,
I have been praying and will continue to do so. I certainly wish the news was good news.
Hugs to you and your family.
Cath

Sunbeam56 · « **Reply #8 on:** August 11, 2008, 02:21:33 AM »

It seems so unfair that a child should have so much pain.

SueSTx · « **Reply #9 on:** August 11, 2008, 05:26:00 AM »

IU will continue to pray for your family...doctors also.

emm · « **Reply #10 on:** August 11, 2008, 05:29:35 AM »

What a blow. I'm so sorry. emm

Sean · « **Reply #11 on:** August 11, 2008, 09:33:56 AM »

That little guy and your family will be in my prayers.

All the best!

Sean

KatFish · « **Reply #12 on:** August 11, 2008, 09:44:41 AM »

Best of luck to him in his treatment

Sandye · « **Reply #13 on:** August 11, 2008, 01:12:45 PM »

I'm so sorry, Esther. :'( He will be in my prayers.

maryvonne · « **Reply #14 on:** August 11, 2008, 01:46:03 PM »

I am so sorry to hear that.

Sending good thoughts for him and his family. Hope the next round of treatments are successful.

Maryvonne

Esther · « **Reply #15 on:** August 11, 2008, 02:37:12 PM »

Dawn said that they tried three different places to insert the IV and he wasn't having any of it. Can't say as I blame him. She was so stressed having to watch it and try to quiet him. I don't know how long it will be before they hear the results of todays test. And then Thursday, they give him an injection around 7 in the morning and then he can't eat all day until the bone scan is run. Poor little kid.

ponderer · « **Reply #16 on:** August 11, 2008, 03:50:14 PM »

Esther,
I am giving all of my good thoughts to you!!

Mikey · « **Reply #17 on:** August 11, 2008, 05:21:18 PM »

Reading about such trials & tribulations causes me to think about how blessed I have been. Continuing to pray for the little guy and his parents.

Teresa · « **Reply #18 on:** August 11, 2008, 05:40:05 PM »

Esther I'm so sorry to hear this. I've followed Braeden's story pretty much all along and hoped and prayed for the best right along with everyone else. Bless you and the family for all you are going thru. And bless that little boy's heart for all he's going thru - there must be a reason, even if we never know what it is. My continued thoughts and prayers for him, you and all his family.

Esther · « **Reply #19 on:** August 13, 2008, 07:09:06 PM »

Thanks, it does help to know that others are concerned and sending good thoughts and praying for us all.

Dawn called and said that the bone marrow aspirate (spelling?) came back cancer free. Tomorrow they inject him with some radioactive something at 7 in the morning and then do a body scan at 11 to see if cancer is anywhere else in his body.

She and I talked about this horrible thing and she is doing pretty good. Said she prayed all along that God would not let her get her guard down and start thinking everything was great so that if it wasn't, she wouldn't fall apart. She said they were shocked to learn the cancer had returned but not surprised as all along there were little hints on one of the counts that said something wasn't quite right. So she said God gave her the new baby to help her not to focus so much on Braeden and his problems. She said they were continuing the Acutane treatments even though it didn't seem they were working. I waited until we were off the phone to fall apart. LOL.

She said the lady that processed his stem cells last year was at the hospital yesterday where the lab stuff was done. When she was processing some of his paperwork, she saw "NEUROB BURGESS" and recognized the neuroblastoma and Braeden's last name and remembered the case. So she looked it up and saw that Dawn was to deliver within 3 weeks so she went ahead and put in the order to harvest and save the cord blood in case either the new baby or Braeden can use it. And because it involves a child with cancer, the insurance will pay for it. Otherwise it's horribly expensive just if you want to have it done.

Now if anybody reads this that is a medical person and has knowledge of this stuff and I have said things that are goofy and maybe not quite right about the particulars, just ignore me. I try to get it right..

Ruthie · « **Reply #20 on:** August 14, 2008, 10:43:42 PM »

Esther,...I will be praying. I am so sorry :'(. But that is really good news about the cord blood. Many many many prayers. I am going to tell my husband to pray as well.

Esther · « **Reply #21 on:** August 16, 2008, 04:36:36 PM »

Dawn is hoping they'll put the broviac tube in his chest soon. Other than the infection risk, that tube makes things so much easier. I think that on Monday they have a meeting with the oncologist.

Funny thing, my stepdaughter Cindi's stepson's best friend is Braeden's doctors son. Got that??

tracey_shafer · « **Reply #22 on:** August 16, 2008, 05:24:43 PM »

Quote from: Joyce on August 10, 2008, 07:18:37 PM

:'( ***PRAYERS!!!! *** :'(

Esther it breaks my heart to read about your grandson and I seldom respond because every time I do I start crying like crazy, thoughts & prayers never leave my heart.

Esther · « **Reply #23 on:** August 16, 2008, 06:09:51 PM »

I know Tracey, thanks. I guess because it has been going on for so long I've gotten used to it, sorta. But part of me had begun thinking it was going to be OK, yet I knew that one test/count wasn't what it was supposed to be so I knew better than to think he was out of the woods.

Part of me knows he was given to our family by his Heavenly Father and who better to take care of the little guy? So if He takes him back some time, we were blessed to have had him for a while at least. But then I go "But we want to keep him!" Ya know? My brain and my heart don't always agree.

bunny56lbc · « **Reply #24 on:** August 16, 2008, 06:21:12 PM »

I'm so sorry to hear this ....he's such a brave little guy .
Keeping Braeden & family in my prayers too Esther .

bonnie

Pa Nancy · « **Reply #25 on:** August 17, 2008, 03:56:30 PM »

I'm so sorry to read this. More prayers for the little guy, and the family.

Krista · « **Reply #26 on:** August 18, 2008, 08:32:22 AM »

oh no

I am so so sorry to hear the bugger returned

Can I send him a card?

Esther · « **Reply #27 on:** August 18, 2008, 12:52:52 PM »

Oh wow, that would be so cool. HE's only 3 so probably won't appreciate it but his folks sure do.

I'll PM you his name and address. If anybody else is interested, I will do the same for you.

Krista · « **Reply #28 on:** August 18, 2008, 01:59:35 PM »

How would he like to receive lots of cards? As a SU demo, I belong to a large group of demos who love to send cards. We've done card drives for several sick kids and adults.

Esther · « **Reply #29 on:** August 18, 2008, 06:09:10 PM »

Krista, that would be great. But let's wait until the surgery or treatments have begun. Maybe we could ask the forum folk to send cards every once in a while too. Right now, other than being up and down emotionally, he's almost all normal right now. I think they had an appointment with the oncologist today. Maybe they have a better idea of the proposed treatment.

I'm almost afraid because it is 9:30 PM and there hasn't been a phone call to tell me what the doctor said or the results of the body scan. I don't know whether to interpret that as "the appointment was cancelled so nothing to tell", or the news was great and so excited they forgot, or

. She had been pretty punctual about posting the information on the Care Pages and there's nothing new there. And I don't want to bother them so hesitate to call. You know all about that kind of situation, don't you Krista? Here's his Care Pages link again. http://www.carepages.com/carepages/BraedenBurgess