Team Manuel Fighting Fanconi Anemia and AML

Team Manuel Fighting Fanconi Anemia and AML Manuel was diagnosed on 6/10/2016 with AML (Leukemia) diagnosed with Fanconi Anemia in 8/2016 had his BMT on 10/7/2016.

I guess it's long overdue for an update on Gabriella. We received her annual report on her bone marrow, and she still is...
02/17/2026

I guess it's long overdue for an update on Gabriella. We received her annual report on her bone marrow, and she still isn't fully engrafted; she's still sitting around the 80/20 mark. This is good news and always concerning news because that 20% is Gabriella's original cells, and they have to be monitored for damaged cells that may turn to cancer. The main concern for her now is the serious back problems she's been dealing with for over a year; she has several compressed discs and fractures. And we found out last week she also has a pinched nerve; the pain has been very severe, and she has missed a lot of school. She's trying not to fall behind and is still on track for graduation in May. Maryella is scheduled to graduate on May 13th with a major in Communication Technology and Design. Some people may have heard that the girls father was deported in September, so the financial burden has been a struggle. Gabriella has put together a list of items that she would find useful for her day-to-day college life; I will share it at a later time. But for now, this is the update I have, and sorry for not keeping her friends, family, and followers better informed. But it has been a difficult few years, as most people know.

10-5-2024Long time since I posted but we’ve had a lot going on, Gabriella is now a Junior and so far doing pretty good. ...
10/05/2024

10-5-2024

Long time since I posted but we’ve had a lot going on, Gabriella is now a Junior and so far doing pretty good. Other than she got a terrible case of Covid the second week of school bloodwork showed her thyroid function was way off and she’s had to start a higher dose to get things back on track.
She’s working at Dairy Queen and likes having her own money and is working on getting her drivers license but it’s next to impossible to get a driving test scheduled. She’s still very much into Science and History and as always excelling at everything she does. She’s looking forward to college and has a few picked out that have the career she’s interested in something along the lines of biology, biochemistry or biomedical.
Maryella graduated and started college this year she majoring in Graphic Design and Communications her college is about 4 hours north of us and she transferred from our local Dairy Queen to the one in her new town.
Grace is doing great working and enjoying her adulthood 😂 not the bills or responsibilities but the freedom.
I’m doing ok, these past few years have tried my reasons for existence and made me question everything about my life for the past 20+ years. I know that someone has a plan for me but I often question why it has to be so heartbreaking and disappointing.

4-26-2022Update on Gabriella, her counts are great other than her liver numbers but this is seen in almost all FA patien...
04/27/2022

4-26-2022
Update on Gabriella, her counts are great other than her liver numbers but this is seen in almost all FA patients and a very common issue. Her team isn’t super concerned with them at the moment, she’s had a viral infection for the last few days but is recovering nicely.
The big issue is her donor status, and it’s not where it should be at this time she’s about 66% Maryella and 33% Gabriella and this number varies about 5% give or take. The team doesn’t know why she isn’t 100% donor or if she will get to 100%, as most of our followers know…. The team is baffled and has no explanation why transplant is teeter tottering like it is.
It’s truly unexplainable because her counts are awesome and she’s doing great, we did receive good news that the bone marrow biopsy didn’t show any of Gabriella’s mutation that she carried before transplant. And this is great news!!
So as always my kiddos have left the doctors stumped and confused and we of course would like for things to just go smoothly and “right” for once.
But things could be worse and they could be better so for now they are just ok.

2-25-2022Update on Gabriella, she officially starts virtual school today and I’m really glad. She’s beyond bored staying...
02/25/2022

2-25-2022
Update on Gabriella, she officially starts virtual school today and I’m really glad. She’s beyond bored staying stuck at home and this will be good for her, she’s a very active person and when she’s idol it takes a toll on her. She’s taking her medicine great, even though it still gives her nausea nearly every morning. We go Monday for a bunch of blood work because we got to skip last week. She’s had some depression and it’s gotten worse since after transplant, which is completely understandable being the circumstances of transplant. This journey isn’t easy on anyone involved… most of all the teens who have to go through it. We’ve made a point to let her pick a movie every weekend and her daddy and sisters all go to a local theater and that’s something she really looks forward too. It’s actually been pretty great because 2 weekends ago they were the only ones in the theater so they got snacks!!! Gabriella still has to wear her mask in all public settings and no eating in public spaces…. But if the theater is empty she’s got it made!!! We are all definitely tired of the snow at this point and ready for some warmer weather! I desperately wanna get in my garden and start enjoying outside time! But considering all things, Gabriella is doing pretty great.

1/30/2022Update on Gabriella, we got home yesterday and are working on getting resettled. It’s a big adjustment after 4 ...
01/30/2022

1/30/2022
Update on Gabriella, we got home yesterday and are working on getting resettled. It’s a big adjustment after 4 months of not being home, the dogs missed me tremendously Manuel’s dog (now mine) has battled so bad with separation anxiety and was so excited to see me!! You take for granted so much in a normal daily life, things like sleeping in your own bed, your own shower, being able to eat or cook what you want whenever you want. I can honestly say We are adjusting but very happy to be home.
Gabriella is doing really great, her bone marrow biopsy and line removal were Thursday and they went great. She did amazing with sedation and has been feeling pretty good. She over did it a tad bit today, but with the ride home and trying to get stuff unpacked and organized it’s understandable. She will still have weekly blood work to keep an eye on her counts and hopefully we will stay on track!!!

1-15-2022Update on Gabriella, she’s doing exceptionally well. Counts are doing awesome!!! Our biggest issue is boredom, ...
01/15/2022

1-15-2022
Update on Gabriella, she’s doing exceptionally well. Counts are doing awesome!!! Our biggest issue is boredom, with the covid rate soaring RMH has put safety procedures in place and that has made things harder on everyone. But we are still scheduled to go home in 12 days!! 🤞🏼🎉 We are both beyond thrilled to be going home after 4 months of not being home!!!! The BMT team already has us scheduled out till the end of April every week we will be driving to Minneapolis weather permitting. Not excited for that but it’s got to be done, and this mama’s gonna take care of her babies!! Gabriella’s doing well in school and looks forward to it everyday, her teacher gets her and they like the same reading material so it’s been a perfect match!! He’s an awesome teacher who has done amazing with her… as she doesn’t venture out of her shell much.

1-4-2022Update on Gabriella, She’s doing ok, we didn’t get to go home for Christmas or New Years. Gabriella’s counts dro...
01/04/2022

1-4-2022
Update on Gabriella,
She’s doing ok, we didn’t get to go home for Christmas or New Years. Gabriella’s counts dropped significantly and she ended up having to get G-CSF infusion to stimulate her bone marrow. She’s had some problems with bone pain since the infusion and is still having nausea, but doing well other than that. We are getting more homesick by the day🥺 and want to go home so bad, the only places we go are to the hospital once or twice a week and sometimes we go through a drive through on Sunday if her daddy & sisters come up to the cities. I chose to leave my car back home being it would be more of a nuisance, clearing snow & having to move it when it snows, paying parking and the carjackings are crazy right now. Everything is delivered to us medication, line care supplies and groceries and of course with this new surge in Covid we have to be super careful. But we definitely get stir crazy and get on each other’s nerves, as to be expected.
But we do have a discharge date lined up and are keeping our fingers crossed that everything stays on track!

12-20-21Update on Gabriella, she’s been doing ok. Her thyroid function has finally leveled out, but she is still being S...
12/21/2021

12-20-21
Update on Gabriella, she’s been doing ok. Her thyroid function has finally leveled out, but she is still being SUPER tired 😴. So I brought it to the attention of the team that she has suffered years with her vitamin D being low, so they agreed to test it and 🙌🏼 mama was right! So now she’s on vitamin D again, She also has been having extreme nausea every time she stands up. We don’t know why but she’s now got a prescription for Zofran every 8 hours and it’s not really helping unfortunately. Her appetite is way down mostly because of the nausea and her wanting foods that aren’t available (mama’s homemade food) Unfortunately kitchens are still closed at RMH (for families) and we can only DoorDash so much.
She gets bored very easily even with tons of games, switch and RMH activities, but her sister plans on staying up here Christmas break and she is VERY much looking forward to her staying 👯‍♀️. We very much are looking forward to going home in January,
She misses her friends and just wants to be back home.
But so far things have been going pretty good. We will deal with what comes and take it day by day.

12-5-2021Update on Gabriella, she’s doing pretty good we had an uneventful Thanksgiving at RMH and are going to clinic o...
12/06/2021

12-5-2021
Update on Gabriella, she’s doing pretty good we had an uneventful Thanksgiving at RMH and are going to clinic once a week. She is having issues with her thyroid and has had to increase her dose twice already, this is causing her to be super tired, among several other symptoms that go with thyroid issues. She’s also had to be put on an antiviral and that’s helping to do it’s job. She is still having some issues with adhesive on her PICC line, but it works for lab draws so we are happy about that!
She did end up wanting to shave all her hair off that hadn’t fell out as fast and is adjusting to being bald.
We put up our Christmas tree here at the RMH and are just waiting now🤷🏻‍♀️ Doctors don’t really want her in any public areas and definitely any public spaces without a mask 😷. So we are pretty confined and that’s getting harder for her, she does enjoy getting DoorDash that’s her favorite thing right now. I’ve been enjoying Amazon Fresh delivery for some of our meals. Yes, RMH does provide meals but a lot of the meals included pasta or rice that has been cooked, frozen and then reheated and bacteria levels on reheated starches are a risk BMT patients can’t risk. And we are gonna play it safe!
All in all, she’s doing pretty great! And we are crazy thankful for that!!

11-20-2021Update on Gabriella, amazingly she’s doing absolutely fantastic 🤷🏻‍♀️ we don’t know how or why!!?? But we will...
11/21/2021

11-20-2021
Update on Gabriella, amazingly she’s doing absolutely fantastic 🤷🏻‍♀️ we don’t know how or why!!?? But we will take it, her brother suffered enough for the both of them. So apparently he made it known to the man upstairs his sister needed to have a smooth ride!!! She is down to 4 medications and starts her Bactrim Monday & Tuesday, we only have clinic once a week till discharge. And if she’s stays well with no fevers or infections we can possibly go home for Christmas!! We would have to come back up till the end of January but we aren’t counting our chickens before they hatch. We have been so blessed with how smoothly this transplant has went thus far.
I know and so many others in the FAmily know this is a miracle, we have lost far to many kiddos to this horrible disease, it’s heartbreaking to loose so many kids year after year. So please keep all of our FAmilies in your prayers this holiday season. Sending our love to Emma Rouths family💗

11-10-2021Update on Gabriella we are currently in sedation, Gabriella’s line that she has labs drawn from has been givin...
11/10/2021

11-10-2021
Update on Gabriella we are currently in sedation, Gabriella’s line that she has labs drawn from has been giving her trouble and the team decided it needed replacing. So they have decided to ditch the Hickman and go with a PICC line, she’s actually happy for the change because of placement.
She’s also getting a bone marrow biopsy to check out how her marrow looks.
Her blood work looks pretty good and her appetite is fantastic. She’s just been very tired, her body has been through a lot this last month and she’s still just recovering.
Other than being bored, she’s doing awesome so far, she’s doing school and working on getting on a daily schedule. She only has to go an hour a day, but sometimes appointments are during that time. But all in all she’s doing very good!
Maryella is doing great, other than missing us terribly and can’t wait for us to come home.

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