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Meet my granddaughter Faith Marie


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As told by her mother Brandi... So many of you have been wondering how Faith is doing. Thank you all for your thoughts prayers and support through this journey. Faith had a rough start since bein

Today Faith Marie is 3 months old. She is 8# & wearing 0-3 mo clothing.

Peanut gained another 2oz this week. She is up to 4# 7oz now. She also pulled her feeding tube out this morning, but she has been taking a bottle that is equal to what she was given through the feedin

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She just had her heart ultrasound & the dr said she could have her eye surgery as long as the anesthesiologist is ok with it. So she will no longer be cross eyed In a few weeks!! That is the best b-day news I could get!! Yea!! We have been waiting & 🙏🏻 for those words for 6 months!! 🙏🏻❤️🙏🏻 😁☺️🥳

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Warning, This is going to be a long post. 
Also Trigger Alert

We took Faith to Pittsburgh on Thursday and Friday for some regular follow up visits, a BAHA hearing aid fitting as well as Pre-Op surgery clearance. The surgery is for her eyes due to strabismus with esotropia (which means her eyes are crossed but only one eye turns in at a time, not both at once)
So I’ll start from the top.
She was fitted for her hearing aid and as you seen in the previous post, it went well. 
What we did learn is that Faith should only need this type of hearing aid and not a permanent one that’s implanted behind her ear. As she grows her hearing should get better as her ear canals widen. So good news. She also got a CT scan of her ears to make sure there is nothing physically affecting her hearing such as blockages or fluid or wax....we are waiting for the results on this.
We saw her cardiologist who was very pleased that her heart has remained stable. She still has the small vsd (hole in her heart) but this is not causing any issues or affecting her in any way other than when she gets sick she has a harder time getting over the colds. So Faith graduated to one year visits!! He was very pleased that Faith has exceeded his expectations! So yay! Good news!
We saw her eye doctor who measured her eyes once more to make sure the surgery was necessary and would be effective. Yes to both of those. Even though the inner muscle pulls her eyes inwards alternately, her vision itself is fine. So she can have her hey surgery! Yay! Good news!
Okay so there’s all the good news.

While we were down there Faith needed to have a screening abdominal ultrasound to check her kidneys. Children with Trisomy 18 are at higher risk of developing Wilms Tumor which is a type of kidney cancer. 
We received these results on Friday 
The ultrasound showed multiple lesions on her left kidney (nephroblastomas) as well as a 2.2cm mass (the size of a ping pong ball). It also showed she has gallstones too.
So an ultrasound is like looking at a black and white tv through a fish bowl. This does not give the drs a full view of how much her left kidney is affected.

So we are going down for an MRI to look at her left kidney and get a better idea of what’s going on. 

Then they are going to try and do a biopsy while she is having her eye surgery.
Then once we get a better idea of what’s going on she may be receiving some “soft” chemotherapy which is the lightest stuff they can give her, easy on her heart as well as her immune system.
Or
She will receive “soft “ chemo and possibly have an operation to remove a part of or her whole kidney. This is depending on the MRI results as well as the biopsy.

We need to move fast. We are going to wage war. These lesions and this mass are ticking time bombs. It is not a matter of “if” it will turn to cancer, it is a matter of when and how bad, but remember, at this moment, it is not cancer, yet.

The chemo will act as a weed killer in a sense, by killing these nephroblastomas (the weeds) before they grow into a bigger problem and spread. 

This will be a week by week and at times a day by day process. 
This is not going to be something that is going away quickly, it’s going to take time and patience, but most of all...it’s going to take prayer.

So what I’m asking of all of you is to do what you’ve been doing all along.... pray.
If Faith has taught us anything it’s that when we come together as one, United, there is Power in Prayer and she is proof of this!
I don’t want you to feel sad.
I don’t want you to feel bad.
I don’t want you to feel sorry.
I want you to feel strong 
I want you to feel the strength of the Holy Spirit coursing through your veins as you pray.
I want you to feel the power and the hope of Jesus Christ in your heart.
She is not just my Faith, she is OUR FAITH!
We are going to keep moving forward, we are not giving up! And Faith is going to keep doing what she’s always done, Defy the Odds and Prove that there really is Power in Prayer cause that’s how she rolls! 
So pray folks and pray hard, put your hearts into it cause this little girl is living off of YOUR PRAYERS and YOUR LOVE! 
Thank you for all your support and your faith in Faith❤️

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So another update in Faiths Journey......
It's not the best news, but at least it's not the worst.
There are lesions (nephroblastomas)on both kidneys. Her left kidney is enlarged and has a sphere shaped tumor which is most likely wilms tumor (kidney cancer). But until the biopsy is done...it is not cancer yet.
Because lesions are on both kidneys, Faith is getting chemo and pronto. 
The lighter areas on the right kidney shows the nephroblastomas. 
Like I said before, her oncologist isn’t wasting time, she’s waging war. 
So here’s the plan simply put, 
Faith will have a biopsy
Faith will be getting a port.
Faith will be having eye surgery.
Faith will be starting Chemo promptly.
We do have one more test to do and I need my prayer warriors to work hard on this....please please please pray it hasn’t gotten to her lungs yet and we caught it in time 🙏🙏🙏🙏🙏
But with that being said even if it did, the chemo should be able to treat it. 
We’ve got a long, hard journey ahead of us but there is HOPE. 
And we know from knowing Faith, that she defies the odds and Proves that there is Power in Prayer!

4D36C09F-9880-433F-A343-C4FDE0FD6CE2.jpeg

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2 minutes ago, Bon said:

So another update in Faiths Journey......
It's not the best news, but at least it's not the worst.
There are lesions (nephroblastomas)on both kidneys. Her left kidney is enlarged and has a sphere shaped tumor which is most likely wilms tumor (kidney cancer). But until the biopsy is done...it is not cancer yet.
Because lesions are on both kidneys, Faith is getting chemo and pronto. 
The lighter areas on the right kidney shows the nephroblastomas. 
Like I said before, her oncologist isn’t wasting time, she’s waging war. 
So here’s the plan simply put, 
Faith will have a biopsy
Faith will be getting a port.
Faith will be having eye surgery.
Faith will be starting Chemo promptly.
We do have one more test to do and I need my prayer warriors to work hard on this....please please please pray it hasn’t gotten to her lungs yet and we caught it in time 🙏🙏🙏🙏🙏
But with that being said even if it did, the chemo should be able to treat it. 
We’ve got a long, hard journey ahead of us but there is HOPE. 
And we know from knowing Faith, that she defies the odds and Proves that there is Power in Prayer!

4D36C09F-9880-433F-A343-C4FDE0FD6CE2.jpeg

Continued prayers Bon.  Let  Brandy and her hubby know we are with them in spirit.  My granddaughter talks to me about them quite often.  She worries about all of the challenges they and Faith have and are continuing to face.

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So I just got a phone call from Brandi. She is upset because they got further bad news to add on top of the pile of bad news. Faith’s left ear canals are completely blocked off meaning she is deaf in that ear. 
I told her remember Joe was completely deaf in that ear also & he made it through life just fine. She said that’s what I kept thinking about, was Joe! 
I told her being deaf in one ear is small in comparison to the other issues Faith is taking on starting next Thursday (chemo). 🙏🏻🙏🏻🙏🏻💙💛💙💛🙏🏻🙏🏻🙏🏻

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22 hours ago, Bon said:

So I just got a phone call from Brandi. She is upset because they got further bad news to add on top of the pile of bad news. Faith’s left ear canals are completely blocked off meaning she is deaf in that ear. 
I told her remember Joe was completely deaf in that ear also & he made it through life just fine. She said that’s what I kept thinking about, was Joe! 
I told her being deaf in one ear is small in comparison to the other issues Faith is taking on starting next Thursday (chemo). 🙏🏻🙏🏻🙏🏻💙💛💙💛🙏🏻🙏🏻🙏🏻

Keep the faith Bon, we're all praying as hard as we can for all of you.

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Ok, so Brandi & Deryk had a zoom meeting with Faith’s kidney dr this afternoon. He said the tumor is 3/4”, that is small. Usually they aren’t found till they are a lot bigger & can be felt under the skin. There will be no biopsy next Wednesday while Faith is getting her eyes fixed. He knows it’s Wilms Tumor aka kidney cancer, so no need to do that. They will put her port in as they told them before.

Chemo will start Thursday for 6 weeks. They will do a scan & tests to see how the tumor & his buddies are doing. If it’s shrinking, they will do 6 more weeks. They will run tests again. If the tumor & his gang are gone, yea! If the tumor is still there, he will take only what he absolutely must take of the kidney.

Wed: eyes fixed & port put in. Thur: Chemo starts.

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