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Mimi’s Prayer Solidiers, Chapel Hill, NC (2025)

08/15/2025

Just a brief update as we clip the year mark. BMT is not for the faint of heart. They may tell you 100 days and then back home…but don’t assume or count on it. We started this journey one year ago and she takes more meds now than she did then. She still has to mask 24/7 because of her immune system. She still has a gtube because she doesn’t eat orally due to mouth sores. She takes over 20 pills a day and we still struggle with grafts vs host even with her donor cells only at 8%. Her hair, scalp, skin, gi tract and eyes have all bee affected and the timeline for getting better is quite vague…and to top it off her BMT doctor left this month 😩
While I had hoped she would be able to start a special preschool this month, she’s not strong enough yet for daily school and that was a surprise for us. We are looking at a year left at least as we have to do any weaning extremely slowly and even that can backfire (we had weaned the steroids over 3 months only to have to go right back on them literally a week later).

But is she happy? YES! Is she relatively healthy? Much better than with sickle cell. So we Praise God for that.

05/08/2025

Considering closing this page down because my heart aches. I’ve never been one to share all the sorrows and our family tends to get quiet when we are in the thick if it. But your prayers help!

Mimi has started having pain again…unexplained pain, which is classic sickle cell. Her donor myeloid cells are down to 10% and her total Tcells are only 20-%. Barring a miracle (I believe in a mighty God, so this is 💯 possible!!) she will go back to her baseline sickle celll soon.

To add to this, she’s having kidney issues, spilling large amounts of glucose and protein into her urine. The doctors are very concerned and we meet with nephrology to see what we can do about her kidneys and if this is in fact the beginning of Chronic Kidney Disease (CKD) from the BMT (yes the treatment can cause new long term issues sadly) of if the damage is acute and will repair itself as we wean off the chemo and steroids.
Last new thing- her grafts vs hosts disease (GVHD) has gotten worse- mouth sores, rashes, eye issues, so it’s officially been changed to chronic which usually sticks around for 3-5 years..ugh it’s too much sometimes. How can she have GVHD with barely any donor cells left? The doctors have no idea. Classic Rose medical perplexity. Sometimes I just want to be the 95%.

Pic of her and John Patrick swimming. We took a risk and went to Florida for a swimming trip. 💯 worth it. She was OBSESSED. We didn’t do anything else except swim and watch movies. Sorry St. Augustine, Fl- I’m sure your 500 years history is amazing, but sickle cell kiddos and swimming successfully? Nothing really competes with that. Second pic is at Carowinds (six flags in Charlotte). She adored the merry go round!

04/16/2025

Another update without change in the right direction unfortunately. Mimi has been having a lot of issues that I thought we were done with. She has mucocitis sores all through her mouth again, which only happened during the first two weeks of transplant. The doctors had me send some pictures in, but it’s concerning this late in the game. She also has issues with her kidneys. The doctors are keeping a close eye on it because they cannot stop the meds she is on right now and they are not sure if the damage is permanent or from the harsh medicines. She’s stopped ewtinf a anything except soups andd oatmeal, so shes back on full tube feeds until we get the pain from the mouth sores (and honestly they can be all the way down the gi tract which we cannot see 😩😥). Praying these go awayy asap.

She tested very high for iron overload so we will Kelley get an MRI soon to see if the iron has deposited somewhere scary (like her liver or kidneys), which would require active treatment (that is only mildly helpful). Right now we are avoiding blood transfusions as much as possible to hopefully avoid any further iron deposits.

And yeah- her donor cells continue to drop. T cells down to 27% Charlotte. Two weeks ago they were 33%. It’s been a steady decline since January. They never ran the blood sample for the myeloid (a bunch of tests were missed actually), so I don’t have that percent, but it looks like it’s down to 7% based on the other numbers. I’m really struggling here.

But she is still loving life somehow. She comes to pray with me every morning and plays with her siblings and daddy every day. She’s enjoying the neighbors doggies now that she can say hi. It’s as if her body isn’t in total chaos inside. I love that about her. She loves life. Just one day at a time. I’m going to try the Mimi approach and see how it feels. Pic of her with John Patrick and Chloe after our night prayers.

04/02/2025

Phew it’s been a long month. Ok, I’m finally circling back, sorry! I want to report good news, so I always wait for that, but it’s been awhile in general, so time for some updates either way.

Mimi’s kidneys have been struggling a bit. Her levels are way off and the doctors are concerned. Not full panic mode, but we received an infusion during clinic and they ran additional tests.
There are a BUNCH of abnormal tests that I haven’t had a chance to connect with the team about. I am hopeful that because they haven’t reached out to me, their meaning is either not urgent or needs to be tracked long term before we can understand the trends.

Her iron is well over 1,000 so she officially has iron overload. They are going to do an MRI of her liver to make sure she’s not in danger of liver issues. We may start chelation next week.

Her chimerism remains unchanged for the myeloid (blood cells) and even lower for the T cells (immune system). Charlottes cells aren’t that present right now, but the team hasn’t lose all hope. Mimi is on steroids for the GVHD she has in her gut and skin, which can affect the donor cells. Praying they surprise us this week!

Her energy has also been WAY down recently. She’s napping several hours a day more than usual and going to bed for 14 hours as well. I’m praying she feels low because of full engraftment, but we shall see.
We do have a few rays of hope. She recently got her first cold post BMT- and she seems to be fighting it off pretty well on her own! This is a huge milestone for her. She also is able to go outside in small spurts with her mask/hat/long sleeves on and she LOVES it.

Pic of her blowing kisses and loving life. Even with all this craziness going on in her body, she is still having a blast with all her siblings. She especially loves the beach and the sand. So we go there a lot to let her have some fun.

03/10/2025

The hardest part of being home is the quarantine requirements. Any fever? 5 days. Flu or Covid or RSV? 2 weeks. But compound that with 11 people in the house and it seems like we will never be altogether. Currently on a quarantine for 4 kiddos for the next week. Still waiting on chimerism numbers, but her sickle hemoglobin percentage is 12%…higher than it’s ever been since August and starting this journey. Praying for a miracle here. Pic of life and her loving it because kabobs are amazing.

03/01/2025

Some good news this past week! Mimi’s chimerism numbers finally went up! Now it was just a slight bump, but it’s a little closer to a cure. Her myeloid cells that produce blood went from 8% to 11%, which is the first bump in 6 weeks. Her GVHD, which has been attacking her gut, skin and eye has been much better since starting the steroids.
She has started gaining weight, so we’ve trimmed down her overnight feeds. She’s happy about that because she hates her night “tuby”.
Her energy is crazy high and she spends most days just running around the kitchen island lol.
We aren’t out of the woods yet, but things are finally heading in the right direction. I try to remind myself that we are only at day +74 and things below 100 days are always very variable. Praying her levels keep ticking up.

Pics of Mimi doing her two most favorite things- bubble baths (in a blow up tub because the rental doesn’t have a tub) and drawing pictures for us. She also has a new hat (she needs to wear a hat any time she’s in direct sunlight because it can cause grafts versus hosts on her scalp) and she LOVES this large brim.

02/25/2025

I finally have some good news to share! Mimi’s blood labs were fantastic yesterday! Her hemoglobin actually went UP in its own for the first time. This is great news as it shows that her bone marrow is recovering nicely and working on its own. Her platelets and white cells are also in the normal range! This gives her a much better chance to fight off infection should she be exposed!!
We are currently waiting for her chimerism which will show how she is doing with rejection. Her GVHD has finally calmed down and her GI tract is recovering nicely.
Our prayer focus this week is for her donor cells to be up! This is the final piece of the puzzle.

Pics of Mimi playing happily with her kitchen set. John Patrick and her play together so sweetly, I love it!

02/19/2025

So Mimi has been officially diagnosed with GVHD in her GI tract, which is rough to heed, but also gives us a solid reason for 6 months of diarrhea. I’m so glad they did the biopsy because visually they said it was great, but the pathology told a very different story.
They’ve started her on steroids for it, which have already helped her physically. Her rashes on her skin went away and her eyes look better. Her stool is also slowly getting better. She is even eating more! She’s still tube fed, but hopefully we can wean even further soon.
Unfortunately, she is also grumpy! But not excessively yet.
Onto the next piece of news- her chimerism was not good. Her myeloid cells stayed at a wimpy 8% and the worse news was that her t-cells, which were thought to be fully engrafted at >95% fell to 70%. Her numbers are officially WORSE than when she was deeemed fully rejected and eligible for the second transplant. For some reason they haven’t yet called it rejection yet, so we are clinging to hope and prayer. It’s so tough to stay positive with all this plus Sophia (currently hospitalized for over a week) and John Patrick (getting admitted tomorrow for gallbladder and port surgery) still having issues.
Sean has been gone a bunch with big things breaking at our house (water main burst, electrical issues, etc. good thing he knows how to fix it all!) and 4 kiddos had to quarantine from us for 3 weeks for the flu (that just wouldn’t go away!), so we’ve all been apart yet again. I just went to be back home and all together. We leave the rental in 10 days, which is wild to me because we don’t technically get the “blessing” to go back home until Feb 26…😳😩 if they say no, we head back to the Ronald McDonald house and split up again. I’m tired. The kids are tired. Sean’s tired. I like an adventure, but yeah. This is a little more than that. Please pray for fortitude and perseverance as we transition back home hopefully at the end of this month and that everyone is out of the hospital!!

Pic of Mimi with her “magnesium” face after showing me how to mix her medicine lol. She was not happy that it tasted so gross 😂😂😂

02/11/2025

We got some questionable biopsy results back after Mimi’s upper and lower GI scope last week. I’m waiting for the doctor to call me to review them, but today the NP was very dodgy and said she wasn’t qualified to review them and the doctor would have more information. Well gee that doesn’t sound suspicious right?
From what I can tell, it looks like early signs of GVHD and possible celiac disease, but there was a TON of information along with comments I didn’t have access to, so we shall see when I finally connect with them.
Mimi also needed a blood transfusion today and Sophia got admitted in the middle of our clinic visit. It’s been pretty exhausting lately and everyone just wants to be at home after too much time apart or away or a combination of both.pray for fortitude as we weather this next storm. I’m getting tired.
Pic of Mimi all happy ad she heads into the colonoscopy/endoscopy surgery. For someone who just did a massive clean out, she sure is happy 😂

02/01/2025

Ups and downs!

Update- her labs are very unusual. Her T cells- which are your immune system- are fully engrafted right now at over 95%...

But her myeloid cells- which are what produces your blood cells- dropped even lower to 8% from 13% last time.
They of course haven't seen such a dramatic difference between the cell lines like this in their other sickle cell transplant patients and it will likely be many months before we know which way things are headed. They are considering a white cell harvest from Charlotte and then transfusing that to Mimi. I’ll explain more on that if we go down that route.
Next week Mimi goes in for a full endoscopy and colonoscopy with biopsy to see if she has GVHD in her gut. She’s had constant diarrhea since September. Praying it’s something easily fixed and not damage to her gut from the donor cells.
Pic of Mimi grumpy and in the car- we went up to the mountains but the weather turned on us right when we got up there so no hike- she was very unhappy about that!

01/27/2025

Just a quick update- We went to GI on Friday because the doctors think she has grafts vs hosts (GHVD) in her intestines. They want to do a biopsy to confirm, which for her requires full anesthesia. I’m not sure if that will mean we are admitted or not, so tbd. She also has had SEVERE diarrhea and stomach pain overnight, which is in line with GVHD. If she had it they will need to suppress her system even further, which would lower her donor cells too. 😞
They are running another chimerism test today to see what her donor levels are. Praying they are higher than 13%…any number higher is good news at this point! Pray with us for a miracle jump! We just need 20% this week to give the doctors hope that she is headed in the right direction!
Pic of her with her “fake nails” stickers and a few at the beach as we took a day drive to break up the monotony of home quarantine. It’s an easy place to go because no one is there in the winter either, so still quarantining!

01/21/2025

It wouldn’t be a Rose adventure without a plot twist. I’m happy to report that this one is fairly minor in the grand scheme of things.

One issue with BMT is that it takes time for your blood levels to produce on their own. They often have to give replacements for red cells and platelets and boosts for white cells. So this isn’t out of the ordinary…it was just a holiday so we didn’t get to be in clinic.

We were playing at the rental when we started seeing drops of blood randomly on the sheets. We finally realized that she was slowly bleeding from her fingernails, legs, and lip. They admitted us and gave us blood. Interestingly enough her platelets were fine. She perked right up and we should be heading home soon.

Otherwise, we are still in a waiting pattern with her donor levels. To be continued…

Pic of her mad about heading in and then of giving Sophia snuggles in the ER while we waited for our bed upstairs. She makes me laugh every day!

Mimi’s Prayer Solidiers

08/15/2025

05/08/2025

04/16/2025

04/02/2025

03/10/2025

03/01/2025

02/25/2025

02/19/2025

02/11/2025

02/01/2025

01/27/2025

01/21/2025

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