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August 2012 Moms
Buona Fortuna
member
An update:
Buona Fortuna
member
I see some of you found my blog. LOL. I will cut and paste the update I put on there here. It's kinda lengthy, I apologize. Once again- I really do appreciate all your support. You have no idea how much it helps.
An update, without an update.
Today was our follow up with neuro-oncology.
As we sat in the waiting room I saw 3 other little babies about Liam's age. One obviously was pretty sick he had the "cancer kid" look. He was pale, had no hair, and was thin- but he was smiling and playing. I felt bad for praying that my kid wasn't going to be a "cancer kid". The other 2 babies looked "normal"- I wondered why they were there. Were they waiting on their prognosis too? Were they wondering why we were there?
After what seemed like forever, the doctor finally came in.
It's a tumor. It's in his brain stem. It's inoperable. (yes yes yes- this I know). And here comes the frustrating part. That's STILL all we KNOW. (WHAT!?)
The "tumor board" met and discussed Liam's case. They all seemed to agree. The diagnosis is likely a "low grade glioma". Here's why they think it's "low grade"-- He's NORMAL.
The MRI showed the tumor to be "intrinsic" meaning growing in the brain tissue, not on it. If it were "extrinsic" they could basically shave it off like a wart. Most low grade gliomas are extrinsic, the bad ones are intrinsic, but the bad ones cause symptoms. Liam is NORMAL. He has no neurologic symptoms.
Best case scenario: Liam was born with this tumor, it doesn't grow, EVER. He gets to be an old guy- just an old guy with a brain tumor.
Worst case scenario: Whoops- It's not a low grade glioma, it's a high grade glioma. Liam has 6-12 months to live.
Let's hope for best case scenario.
We were given option to start chemotherapy- but of course that comes with side effects- and- if the best case scenario were to happen, we don't need it. The doctor recommended a "wait and see" approach. Basically we will repeat the MRI in 3 months to see if it has grown. If it doesn't grow, we repeat an MRI in 3 months, every 3 months for a year. Then every 6 months, then annually. If it grows a little, we will start chemo. If it grows a LOT, we will start chemo and radiation (and that means it's a high grade glioma and the worst case scenario).
We will be sent to see a pedi-neurologist so he can monitor Liam for any slight neurologic symptoms, like changes in reflexes or slight changes in strength that we as parents may miss since we are with him every day.
So now we wait. We pray. And we continue living life. Thank you all so very much for your prayers, well wishes, and positive vibes. I truly feel as though Liam is destined for the best case scenario.
Love you all-
As we sat in the waiting room I saw 3 other little babies about Liam's age. One obviously was pretty sick he had the "cancer kid" look. He was pale, had no hair, and was thin- but he was smiling and playing. I felt bad for praying that my kid wasn't going to be a "cancer kid". The other 2 babies looked "normal"- I wondered why they were there. Were they waiting on their prognosis too? Were they wondering why we were there?
After what seemed like forever, the doctor finally came in.
It's a tumor. It's in his brain stem. It's inoperable. (yes yes yes- this I know). And here comes the frustrating part. That's STILL all we KNOW. (WHAT!?)
The "tumor board" met and discussed Liam's case. They all seemed to agree. The diagnosis is likely a "low grade glioma". Here's why they think it's "low grade"-- He's NORMAL.
The MRI showed the tumor to be "intrinsic" meaning growing in the brain tissue, not on it. If it were "extrinsic" they could basically shave it off like a wart. Most low grade gliomas are extrinsic, the bad ones are intrinsic, but the bad ones cause symptoms. Liam is NORMAL. He has no neurologic symptoms.
Best case scenario: Liam was born with this tumor, it doesn't grow, EVER. He gets to be an old guy- just an old guy with a brain tumor.
Worst case scenario: Whoops- It's not a low grade glioma, it's a high grade glioma. Liam has 6-12 months to live.
Let's hope for best case scenario.
We were given option to start chemotherapy- but of course that comes with side effects- and- if the best case scenario were to happen, we don't need it. The doctor recommended a "wait and see" approach. Basically we will repeat the MRI in 3 months to see if it has grown. If it doesn't grow, we repeat an MRI in 3 months, every 3 months for a year. Then every 6 months, then annually. If it grows a little, we will start chemo. If it grows a LOT, we will start chemo and radiation (and that means it's a high grade glioma and the worst case scenario).
We will be sent to see a pedi-neurologist so he can monitor Liam for any slight neurologic symptoms, like changes in reflexes or slight changes in strength that we as parents may miss since we are with him every day.
So now we wait. We pray. And we continue living life. Thank you all so very much for your prayers, well wishes, and positive vibes. I truly feel as though Liam is destined for the best case scenario.
Love you all-
The HOGANS (Jamie, Chase, and Liam)
This discussion has been closed.
Re: An update:
BF, I am so sorry that they really had no concrete information for you, but I am happy with what they think is going on. I pray they are right for your entire families sake.
Is all of this going to affect the procedure they were planning on doing for his eye? I just wondered.
I will continue to think of you and your family. Please KUP with his updates.
I am so sorry Liam and your family has to go through this! I can't even imagine! I know it's hard to look on the bright side and find optimism any any of this but it sounds encouraging that they think it's low grade because he isn't showing any neurological abnormalities. I wish him and your family all the strength in the world. Thank you for sharing.
Thank you so much for the update BF! I am praying, praying, praying for best case scenario. We are always here for you, for what ever you need!
It is still planned for July 11th. so we have that to look forward to as well.
Crying again. I will pray for the best case scenerio!!! It sounds like you are in very good hands with the doctors and with getting to see a pedi-neurologist. We are all rooting for you Liam!!
(((hugs)))
Sending lots of thoughts and prayers your way!
OMG, BF! How horrible to have to just wait and see. It's almost worse than knowing. I will pray for your family!
*best case scenario**best case scenario* *best case scenario*
We just had the records sent today. They should be contacting us shortly with the date of the appointment. I'm glad I've been at my job 5 years so I have 5 weeks of vacation time. I'm blowing through it pretty fast. They're also being super understanding with my sudden "I need off tomorrow's"
___________________________________________________________________________
Trying for #1 since May 2010 l DX ~ Unexplained Infertility June 2011
IUI #1&2 = BFN; IUI #3 = BFP, m/c @ 6 weeks
November '11 ~ IVF#1 ~ ER 11/18 (29R, 17F) ~ 5dt of one beautiful blast on 11/23 = BFP!!
Beta #1 9dp5dt = 116, P4 = 28 ~ Beta #2 13dp5dt = 700 ~ Beta #3 20dp5dt = 9500, P4 = 26
1st u/s 12/27 - hb of 156!! EDD 8.10.12
**TEAM GREEN!**
Sweet baby boy born 8.18.12
Trying for #2
FET #1 - October '13 - c/p l FET #2 - December '13 - cancelled
l FET #2.2 - 1.30.14 - BFN
~ More testing - hysteroscopy, endometrial biopsy & more b/w - all normal / negative~
Surprise BFP while waiting on FET #3 ~ beta #1 500; beta #2 1600; first u/s 4/3 - measuring 5w5d, no hb yet!; 2nd u/s 4/10 - hb 132, measuring 6w6d - EDD 11.29.14
**TEAM GREEN!**
Beautiful baby girl born 11.24.14
DS #1 Born: 10/03/06, DS #2 Born: 08/06/12 My Cooking Blog
I think that is a brilliant choice. A lot of moms don't have the 'balls' to question a doctor's opinion or to even opt for a second one. I respect that and would give you ten high-fives if I was near you.
I'm so sorry that there wasn't a concrete answer given. Hopefully, as the months go on, you guys can return to some sort of normalcy. I have high hopes for Liam and I'm sure you do too. The fact that this tumor should cause symptoms and hasn't is a great sign and blessing.
You know that if you ever need us, we're all here.
SCANDAL!
Well I would hope so! I hope the children's hospital is able to see him right away.
1999- Dx Prolactinoma
8-25-2012 - Lucas born via C-section at 38 Weeks 2 days
Proud Mama to cleft cutie
That helps that your work has been super understanding - I hope it continues to go that way!
Baby #2!
All your Who's in A12 are yelling as loud as we can for the best results possible.
Mom of 2 monkeys and 1 on the way!
Christian12/06, Liam 08/12, Monkey #3 10/10
Fingers crossed and praying for the best case scenario! You're an incredible woman and are handling an impossible, heartbreaking situation with such beautiful grace. I'm here for you in anyway you need....please if there is anything at all that any of us can do to make the load a little lighter, let us know. Big hugs and tons of prayers.
xoxo-Lindsay
, 💙💙💙💙💙💙
Official Due Date 5/29/15 & HB 143 on 10/13; 11/25 Harmony Results perfect & it's a Girl!
Off BCP 5/2009
TTC since July 2010
DH's SA = Normal!
Hysteroscopy 2/2011
50mg Clomid / Progesterone 77.5 April 2011 = BFN
25mg Clomid / Progesterone 53 May 2011= BFN
25mg Clomid / Progesterone 44.3 June 2011= BFN
5mg Femara / Progesterone 15.7 July 2011= BFN
5mg Femara / Progesterone 14 August 2011= BFN
5mg Femara + Crinone / Progesterone 32 September 2011=BFN
5mg Femara + Crinone / Progesterone 14.9 October 2011=BFN
First RE Appointment 11/2011
Hysteroscopy 11/2011 & on Med break
12/2011 Diagnosed with PCOS (Insulin Resistant)
12/2011 Adding 1000 MG Metformin per day
12/14/11 BFP
Beta #1 664 Beta #2 3330 Beta #3 6160 Beta #4 19546
Official Due Date 8/18/12 & HB 147 on 1/3; HB 171on 1/19
Pre-term labor @ 29W bed-rest till Emergency C-Section
IT'S A GIRL
The fact that your lil Liam "should" be having some type of neuro deficit but, miraculously doesn't, speaks volumes to me here.
I have left behind the idea of praying and hoping. Instead, I'm praying expecting more positive developments to keep right on happening.
He is already a miracle in my opinion.
Hugs and prayers sent to you all!