Blaine’s Odyssey

03/12/2025

12/2/25

Small update!

Blaine had an appointment today with her hematologist! Numbers are looking great! Her platelets are in the low 500s. She has been on her Jakafi med for 18 months now and it’s working to keep her white blood cells/red blood cells/ and platelets under control!

In fact, since she is so stable blood count wise, she now can go in every THREE months instead of monthly like we have been! While I’m so thankful everything is going so well for her and she is stable, it’s hard to not see her hematologist and nurse as often! I’m not worried about “what if” right now, because I know what to do for Blaine in an emergency and can tell when something is off. BUT we LOVE Dr. Mba and Shanna, and they are some of our favorite people in the world! We have been in the trenches together for so long! We love to see them on the regular just because. It will be weird and sad to not see them as often.

That being said… I truly am so thankful that Blaine is stable. She goes back to her gastro/liver doctor in February, and will have another endoscopy between now and then.

I am attaching a graph of how much Blaine’s platelets have changed since her splenectomy and modified sugiura in October of 2023. She has come a LONG way to getting back into a normal range for her. She has now gone NINETEEN months without any bleeds!

Please continue to pray for no bleeds, no clots, no infections, and continued stability while she lives with her polycythemia vera and portal hypertension! She will always be considered high risk, but we are so blessed to be in this moment of stability!

20/10/2025

10/19/25

Yesterday marked two years since Blaine’s splenectomy and modified sugiura. It’s hard to believe it’s been that long! That was a rough recovery!

Blaine has now gone a year and a half without a bleed! I know I haven’t updated in a while- but we have been busy living life as normally as we can!

Blaine’s numbers have been great the past few months. We just got the results from a test to see what level of mutated cells she has, with the goal being less than 50%. She is at around 42%! This means the medication (Jakafi) she is on is working to keep her blood levels stable.

In case you missed it, Cincinnati Children’s decided to decline listing her for a multi visceral transplant. This was what we expected! She is so healthy/stable right now- it doesn’t make sense to put her through something that could make her less stable and cannot be undone. We will continue with routine endoscopies to monitor and treat varicies to prevent bleeds! Transplant isn’t out of the question in the future, but we will wait as long as possible before we choose that path. We also will not pursue a TIPS procedure because they are concerned with clotting issues. It is a potential option in an emergent situation though.

Overall, Blaine really is doing great. She is still figuring out how to best take care of herself without over doing it. She is doing all she can to prep for college after she graduates in 2027. Her plan is to go into pediatric medicine. This disease - the polycythemia vera and portal hypertension- has shaped our lives so differently than we could have ever imagined, but it will definitely mold her future, and I believe, have a positive impact on her future patients!

Please continue to pray for no bleeds, no clots, no infections, and for Blaine to remain stable! And thank you from the bottom of our hearts for the continuous prayers and support we have received since we began this journey in September of 2022. This picture below is just part of our support system, that gathered to pray for Blaine on the day of her surgery 2 years ago!

Family, friends, doctors, nurses, supporters near and far….I am full of gratitude and love for you all!

22/08/2025

Blaine was on our local news station last night! She helped talk about a new medical program that was started at our school!
Blaine has decided that she wants to go into pediatrics - and this program of study will help prepare her even more than her own medical journey has! Check it out!

"This is going to give them the pathway to a career somewhere in the health field. I just think that's great that," said Glenda Locke, George West teacher.

25/07/2025

7/24/25

Blaine had a gastro appointment Monday at Texas Children’s, and an endoscopy on Tuesday.

Her appointment was good- we really love her doctors and it was the first time we have seen her gastro doctor since April. I know that’s really not that long, but when at one point we saw her doctors everyday for months- you miss them! Her doctor told us they have been in contact with the doctors in Cincinnati and they always appreciate a different perspective. She thinks a TIPS procedure could work also. One reason they don’t typically do those in pediatrics is because it isn’t sustainable when kids keep growing- your veins grow with you! Anyway- Blaine is adult sized and pretty much done growing. It typically is not a permanent solution pediatricly. If it can help prevent a transplant for even a couple of years that will be great. If she can wait until at least 18, we will have more options of the WHERE for transplant. Texas has multi-visceral transplant centers for adults. Also- you never know what new medical options will be available in a few years!

On Tuesday- for the endoscopy- Blaine did not need any banding! Her esophagus actually looked pretty smooth (how it is supposed to) and only some small varices at the bottom of her esophagus could be seen. They were too small to band. Her stomach still shows signs of portal hypertension, but that is expected. Everything looked so good, her doctor said we can wait 6 months to do another endoscopy! She has been needing them every 2-3 months so this is great!

Cincinnati also requested another CT to have another view of Blaine’s veins- and by luck- we were able to get that scheduled and done right after her endoscopy! Texas Children’s will send the images to Cincinnati and the doctor we see in interventional radiology at Texas Children’s is being looped in!

Blaine’s doctor said she looks good- and she does. If you didn’t know she was sick and had all of this stuff going on, you wouldn’t be able to tell!

We are grateful for a positive appointment and procedure. Please continue to pray for no bleeds, no clots, and no infections! Also pray that Blaine remains stable and can continue to be as “normal” as possible. Pray that her massive team of doctors continue to think of ways to help her without changing her quality of life! Blaine has continually accepted all the tests, reports, news, diagnosis and curve balls with grace and bravery. I often forget she is a “kid” because she has taken everything in stride and kept a positive attitude and faith through everything. We are feeling grateful!

13/07/2025

7/12/25

Blaine was able to go to Camp Aranzazu in Rockport this past week, and was able to take her brother along! It’s a camp Driscoll hosts called Camp TLC (Teens Living with Cancer and Blood Disorders).

They both had a great time, and said it was better than any other camp they have been to. They were able to fish, kayak, sail, craft, had a marshmallow paint war, campfires, an obstacle course, swim and a lot more! Trey was also impressed with the brownies they served for dessert- which is the true way to his heart.

They were able to get along with each other the majority of the time at camp, and started fighting almost immediately when we picked them up 🤣. They were both asleep on the way home in no time!

We are grateful for this camp that Driscoll organized! The nurses and some of the doctors go to camp too, so as parents it was nice to let Blaine go be a kid without having to worry!

10/07/2025

7/10/25

Not much to update today!

I actually talked to one of the doctors last week Thursday, and then to the surgeon on Monday.

I believe they are waiting to discuss Blaine's case until the intervention radiologists are back/available. They believe they can possibly do a TIPS procedure, where they open up blood flow to the liver using a stint. That is a VERY simplified version of it.

They will not know for sure until the intervention radiologists can review with them, and the main doctor for that is out until next week.

If they are able to do a TIPS procedure, it will avoid transplant, at least for a while. It would help restore blood flow to the liver, reduce the pressure in her other veins and should reduce her risk for bleeds significantly.

Please pray for no bleeds, no clots, no infections, and that the intervention radiologists are able to meet with her other doctors soon - and specifically that they find that the TIPS procedure can and will work.

I’ll post more information when I have talked more to Blaine’s doctors!

28/06/2025

6/27/25

Blaine, her brother, dad and I just got home from spending the week in Cincinnati!

Blaine was able to get all of the testing done they needed while we were there. 28 vials of blood for all of the labs, an MRI, 2 different types of X-rays with contrast, an EKG, echocardiogram, another long radiology test to check for kidney function, several consults with lots of doctors - 2 gastroenterology, surgery, psychology, nutrition, pharmacy and infectious diseases- plus social work and financial. It was a lot packed in the 5 days we were there!
So- the test and data collection part of the transplant eval is complete. We should hear back from them with their thoughts by July 10th.

I’ll share more medical details later- but this is a quick “we made it and got it all done!” Post!

Since Blaine was able to do everything outpatient, we did get to do some fun stuff while we were there. This trip, we made it to the Newport Aquarium, Findlay market, and our favorite of the trip- the Cincinnati Zoo and Botanical Gardens. We also had some good food. There is a lot more we want to see in Cincinnati… but it will have to wait until the next trip!

05/06/2025

6/5/2025

So here is the big update. We have known this for a bit, but have taken some time to adjust and wait for next steps to be clear.

In April, we reviewed Blaine’s venograph with her GI doctor at Texas Children’s. The results reflected that Blaine needs more than a liver transplant. Specifically, they believe there is not enough portal vein to attach a new liver to. Normally, the liver is attached via the portal and splenic vein. Blaine no longer has a splenic vein because of her splenectomy, and they think her portal vein is too “short” to safely and successfully attach a new liver.

They advised that she should have a liver AND small bowel transplant. This would “fix” the problem of there not being enough portal vain. HOWEVER, they do not perform these transplants at Texas Children’s Hospital. They are not set up/equipped to do multi-visceral transplants. They recommended two children’s hospitals for us to research to be referred to. This included Cincinnati Children’s and Children’s Hospital Philadelphia. While it would be very cool to have a small chance to possibly run into Jason or Kylie Kelce, we chose Cincinnati.

We will be traveling to Cincinnati later this month for 4-5 days of testing for Blaine. Since she is stable, she will be able to go to all appointments and procedures as an outpatient. They essentially have to collect all data to perform their own transplant evaluation. They are using as much of the data from Texas Children’s as they are able to.

We will wait to see what they think. IF they agree that Blaine needs a liver AND small bowel transplant, we will discuss timing as best we can, to wait as long as we safely can.

The recovery process for a liver and small bowel transplant is much much longer than just a liver transplant. There is a higher risk of rejection, and she would start on a much higher dose of anti rejection meds. Basically, she will be receiving a new immune system and losing her own. The time required to stay in Cincinnati after transplant is extensive. So if this is the case, our goal/hope is that we can let Blaine finish high school first.

Our ultimate hope and prayer is that they can perform a transplant that gives her what she needs but is not as extensive as the liver and small bowel. Only time and their tests will tell.

The GOOD NEWS is that they can still “fix” Blaine’s portal hypertension. The GOOD NEWS is that she is still stable right now and as healthy as she has been. The GOOD NEWS is that we have some AMAZING DOCTORS AND NURSES that keep showing up for Blaine and working to help her to get better and eventually live a “normal” life.

While this was not part of our plan, we will roll with it. None of this has been part of our plan, but we will choose to move forward with a positive attitude and trust in God’s perfect timing.

Please pray for no bleeds, no clots, no infections. That Blaine will continue to be stable and strong emotionally. Pray that we will have a plan and understanding of next steps, and for wisdom for her current and new doctors. As I said before, this is an Odyssey. While I wish this was not something we had to go through, it is shaping Blaine and our family.

08/05/2025

Today is Blaine’s 16th birthday!
after a day at school, she is spending time in one of her favorite places-the barn!
She still loves her pigs, steers, reading, learning, FFA, serving others, Harry Potter, musicals, shopping and family time!

Happy birthday to a really tough girl with a heart of gold! She is one of the bravest people I know!

01/05/2025

4/30/2025

Blaine and I got to come home today! We got here around 5:00 and had just enough rush time to get ready for Blaine to make it to her NHS induction ceremony.

Even through all of her medical hurdles, she has been able to maintain good grades and volunteer. We are very proud of her! We will keep letting her do as much as she can as long as she can!

29/04/2025

4/29/2025

Blaine had an endoscopy today at Texas Children’s. They ended up banding 4 varices. Since they banded, we are admitted for observation for the night! We should be able to go home tomorrow as long as her labs are good in the morning!

Yesterday she had a hematomalogy appointment and all of her numbers are stable and look good.

Lots of other updates coming soon… stay tuned!

Please pray for no bleeds, no clots, no infections, no headaches, and for labs to be good in the morning!

05/03/2025

3/4/25 PM

Blaine and I got home around 7 this evening! It’s been a long day!

We got up around 4:30 am, and left my sister’s at 5:30 am to be at Texas Children’s at 6:30 am. They took Blaine back around 8 and finished up the angiogram around 10:30 am. Her doctor said the procedure went well, but it will take some time to look through all of the imaging. He will pass along his findings to the liver team. The goal of this imaging is to see where they can attach everything when she DOES get transplanted.

Once the procedure was done, Blaine had to lay flat for two hours, and then not bend her leg at all for another two hours. She slept most of that time since the anesthesia was still wearing off. She has to take it easy for a couple of days so the insertion site does not open and bleed. It was like any other angiogram where they go through the artery in your leg/groin area and inject dye. They focused on collecting images of her stomach, liver and GI tract.

It took us a bit to get out of the NRG area since it’s rodeo and show season already, but we made it!

Please pray for findings that are helpful for a clear path for Blaine’s doctors, no bleeds, no clots, no infections, no headaches and for us to be patient with this process and trust His timing!