LEFTIE4LIFE Posted May 16, 2020 Share Posted May 16, 2020 Thanks for the update Bon! Many prayers for sweet Faith Marie and her parents and grandparents! Bon and Sanibel 1 1 Link to comment Share on other sites More sharing options...
Petee Posted May 16, 2020 Share Posted May 16, 2020 So she's on the road to being an Olympic Star in "CUTE!! mr.d, Bon and Dilligaf 2 1 Link to comment Share on other sites More sharing options...
WMJ77 Posted May 16, 2020 Share Posted May 16, 2020 as scary as surgery is it will be great for her....she is such a cutie Bon and Dilligaf 1 1 Link to comment Share on other sites More sharing options...
Polo Posted August 3, 2020 Share Posted August 3, 2020 How is this dear little one doing these days? WMJ77 1 Link to comment Share on other sites More sharing options...
Bon Posted August 20, 2020 Author Share Posted August 20, 2020 Faith got her Colear hearing aid this morning. mr.d, Sanibel, m michelle and 2 others 5 Link to comment Share on other sites More sharing options...
Polo Posted August 20, 2020 Share Posted August 20, 2020 Oh, what a little doll! And look at her looking up at her proud father! Precious. I hope all goes well with her hearing now. She looks so healthy. I love chubby cheeks! mr.d 1 Link to comment Share on other sites More sharing options...
Bon Posted August 20, 2020 Author Share Posted August 20, 2020 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!! 🙏🏻❤️🙏🏻 😁☺️🥳 mr.d, fadedgenes, Polo and 3 others 6 Link to comment Share on other sites More sharing options...
WMJ77 Posted August 20, 2020 Share Posted August 20, 2020 great news.....she looks great!!! Polo and mr.d 1 1 Link to comment Share on other sites More sharing options...
Bon Posted August 21, 2020 Author Share Posted August 21, 2020 She will be having her surgery the week of Labor Day!! Yea!! I can’t wait for her to see things correctly again!! mr.d and WMJ77 2 Link to comment Share on other sites More sharing options...
Petee Posted August 23, 2020 Share Posted August 23, 2020 She'll probably wonder why everything looks weird! Link to comment Share on other sites More sharing options...
Bon Posted August 24, 2020 Author Share Posted August 24, 2020 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❤️ Sanibel, WMJ77, etsaunt and 4 others 6 1 Link to comment Share on other sites More sharing options...
Bub Posted August 24, 2020 Share Posted August 24, 2020 I will continue to pray for Faith as well as her family and care givers. There IS power in Prayer!! May God keep blessing you with the strength needed on this continuing journey! Thanks for keeping us updated as well! mr.d and Bon 1 1 Link to comment Share on other sites More sharing options...
LEFTIE4LIFE Posted August 24, 2020 Share Posted August 24, 2020 So many prayers for Faith. I am sure she gets her strength from her two G's, God and Grandma Love your pictures and updates of her too! We will be praying for her and waiting to hear how she and you are all doing! Much love and prayers! mr.d, Petee and Bon 2 1 Link to comment Share on other sites More sharing options...
katie77 Posted August 25, 2020 Share Posted August 25, 2020 Prayers to everyone involved in Faith's Journey. Bon 1 Link to comment Share on other sites More sharing options...
Jay Posted August 27, 2020 Share Posted August 27, 2020 Many many prayers for "Our Faith". Thank you for sharing her with all of us. She is beautiful. Bon 1 Link to comment Share on other sites More sharing options...
Bon Posted August 29, 2020 Author Share Posted August 29, 2020 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! Link to comment Share on other sites More sharing options...
hipower Posted August 29, 2020 Share Posted August 29, 2020 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! 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. Bon 1 Link to comment Share on other sites More sharing options...
Sanibel Posted August 29, 2020 Share Posted August 29, 2020 Sincere prayers and love for sweet baby Faith and her family. She is a warrior baby! Bon 1 Link to comment Share on other sites More sharing options...
Petee Posted August 29, 2020 Share Posted August 29, 2020 Her story has brought out the best in a lot of people. She is a blessing! Bon 1 Link to comment Share on other sites More sharing options...
WMJ77 Posted August 30, 2020 Share Posted August 30, 2020 Our family and friends are all praying for her and her doctors .....she is a fighter, and we all know she will do her part.....kick butt and take names later Faith!!!! Bon 1 Link to comment Share on other sites More sharing options...
Bon Posted September 2, 2020 Author Share Posted September 2, 2020 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). 🙏🏻🙏🏻🙏🏻💙💛💙💛🙏🏻🙏🏻🙏🏻 Link to comment Share on other sites More sharing options...
hipower Posted September 3, 2020 Share Posted September 3, 2020 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. Jay, Bon and WMJ77 1 2 Link to comment Share on other sites More sharing options...
Bon Posted September 5, 2020 Author Share Posted September 5, 2020 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. Link to comment Share on other sites More sharing options...
WMJ77 Posted September 5, 2020 Share Posted September 5, 2020 love and prayers going her way Bon 1 Link to comment Share on other sites More sharing options...
Jay Posted September 6, 2020 Share Posted September 6, 2020 Thank you for the update. So many are praying for her. Bon 1 Link to comment Share on other sites More sharing options...
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