December 13, 2025
Good evening from Manila, Philippines! I haven’t been able to update on here as much as I hoped. We are mostly on cellular service and it’s spotty, plus I only have my phone so typing everything out takes time. And we have been busy!Charlee had her surgery Dec 11. The surgeons found her duodenum was kinked and twisted. They elongated her intestine and secured it properly. They also reinforced her colon. While we cannot guarantee this won’t happen again, we all hope now that it’s been discovered and fastened to the abdominal wall, the likelihood of reoccurrence is low. Charlee had 4 bites of a popsicle and is on liquid diet. Tomorrow we will introduce soft foods like yogurt and rice and see what she tolerates. We are still trying to manage her pain. As soon as I think we get it controlled, it will spike back up again, so tonight we tweaked the plan again to see how she does. I’m more than pleased with the care we have gotten. Dr. Alvear and his colleague, Dr. Suntay, are amazing! If you want daily updates, feel free to follow my personal Facebook page, Misty Carter Terrell. I will update on here as I’m able!
November 30, 2025
I am THRILLED to report that CHARLEE'S PASSPORT CAME YESTERDAY!!!! What a HUGE sigh. of. relief!!!!!! Our bank loan has not yet gone through, so we have a meeting with them tomorrow. We need to send the funds for the surgery/hospital asap, and thankfully we had some generous donors cover that until we get this loan sorted out. The only other "obstacle" I have this week is getting one medication earlier than our normal scheduled pick up and with insurance approval. It is an expensive med, so hopefully tomorrow I can get that sorted out w/ insurance. I had some overwhelming flooding of panic last night. It's one thing to travel alone...I've done that- even to the country Ghana- and it didn't cause me severe anxiety. But traveling across the world with my medically complex kid who is in chronic pain, without full guarantees that this will help her eat without pain, makes me feel high anxiety. I told Jim my brain feels like an Olympic Game ping pong ball. Having been diagnosed with ADHD does NOT help matter! I'm trying to be very intentional to stay grounded, do my "box breathing", manage my executive functioning by setting alarms on my phone and making lists to check off each day. I'm simply riding the waves of panic when they hit, being extra gentle with myself, and working through it in a healthy way. That way, come a week from today, I'm a source of calm and strength and clarity for my girl. I can't believe we have raised $7,640! WOW! Thank you very very much. While we still have a ways to go, I wanted to remind everyone that if we exceed funding for this particular trip, which would be a miracle in and of itself, we will set any additional funding for more medical travel next year. She has to see a surgeon in Virginia in February, and we will at some point be traveling multiple times to either Utah or Wisconsin for her Nutcracker/Kidney Auto Transplant surgery. We also desperately need to find her a gently used car w/ appropriate Assisted Driving Safety features so she can start her life as a college student/young adult. While Charlee does have her drivers permit, she has not driven much because our older cars are not equipped with the accommodations she needs to do so safely. Help Hope Live will not approve reimbursement for the entire car, but they did approve helping with the higher trim options she needs. Surgery is scheduled for Dec. 11th. We do not yet have a time, and I think we are supposed to zoom with the surgeon(s) at some point this week, prior to our departure.I will do my best to update more regularly when we are in the Philippines. Right now, days are crazy as I get everything in order and all our extra medical equipment, formula, meds, etc needed for 4-7 weeks out of the country. We feel God's presence and even in the state of panic that sometimes hits, I also feel so much peace at the exact same time...so it's very very strange. But an "okay" kind of strange. Sending love. Thank you for continued support, thoughts, love, prayers, energy...we feel it.
November 21, 2025
2 weeks and 1 day away…we still do not have Charlee’s passport as her medical tape flagged Dept of Security. I’m supposed to call Sunday to check progress. If we do not receive it by Dec 1, we will have to drive to Hot Springs, AR and wait in the office until it’s in our hands. Hopefully it comes soon!Today I need to book airline tickets to San Francisco for 12/6. Then we leave SF on 12/7 which is a direct flight to Manila. Breathe. We got this. I’m feeling joy and uncertainty. What an odd mixture.
November 13, 2025
Hi! I thought I’d share a brief update on Charlee. Ty for watching!❤️
October 30, 2025
LIFE SAVING SURGERY IN THE PHILIPPINES!!!The absolute BEST surgery for SMAS/MALS is called the Alvear-Fowlkes procedure. There are currently only TWO DOCTORS in the entire US who are actively following this exact procedure on patients. As you can imagine, they are backlogged. The procedure was created by Dr. Domingo Alvear. He is now in his 80's and travels the world teaching other surgeons how to do this life saving surgery. His first was in 1978, and he has done the most SMAS surgeries world wide. Because he cannot operate in the US, we are going to HIM! In the Philippines! Along with us are patients from Canada, New Zealand, and Australia. We also hope to see another family from Texas, who are considering joining us.We are to arrive in Manila, Philippines in December, and will be required to stay for 5-7 weeks. Obviously, this will be costly, with the surgery costing around $20K. Plus flights, food, etc. Our fundraising goal at this time is $30K. If we do end up with any extra, we will set it aside for her next big surgery or medical care. (We are meeting tomorrow via telehealth with the renal transplant team in Wisconsin.)Stay tuned as we are getting organized in our fundraising and hope to be doing several things in our community! We are also working on setting up some merch with Charlee's tattoo art. I think it will be so cute! Thank you for your continued care, love, support, prayers, healing vibes, thoughts, hugs, and texts. We love you all so much and couldn't survive the past 8 years without you!
October 17, 2025
Charlee had an appointment with a surgeon at Texas Children’s in Austin, TX. It resulted in both insight and dead ends. We have taken some of this doctors concerns back to Children’s Mercy in KC and have several follow ups. 1.) gallbladder scan on Monday- just to rule that out.2.) ultrasound to check for another common phenomenon among connective tissue disorders called “Slipping Rib Syndrome”, which means ribs move around placing pressure on nerves causing severe pain with breathing and GI. 3.) Charlee’s Nutcracker Syndrome has progressed, putting her kidney more at risk and higher priority. We have made a follow up call to her Vascular Doctor at Duke University in North Carolina. (There are no pediatric vascular doctors in KC.) 4.) Texas Surgeon recognizes Charlee may have a nerve related Vascular compression called Neurogenic MALS. He does not specialize in neurogenic, so we were referred to a neurogenic MALS specialist in NYC. Again, there are not pediatric neurogenic MALS specialists in KC. As you can see, finding proper care means travel. This can add layers of stress for multiple reasons, but we will continue to fight to ensure she is getting proper care. To top of off, Jim (Charlee’s Dad) isn’t getting paid during the government shutdown. We have lived through shutdowns before, but the timing of this one is definitely not ideal. Because of that, buying a car is on hold. Yet, we press on! This weekend I’m doing some photography pop ups to benefit this catastrophe fund! I’m hoping for a good turn out and hopefully great weather! I’ll update next week after her imaging! Thank you for continued support! ❤️
October 4, 2025
Charlee & Jim just got back from a short trip to Austin, TX to visit a surgeon at Texas Children’s Hospital. We are still waiting for a follow up call after some imaging. The frustration with vascular compressions is…very few doctors are specialists. It’s extremely important to find a knowledgeable expert which makes it a very difficult and challenging process. It requires so much effort on our part to do loads of research and being an active participant in support groups. We learn so much from others in our same situation!We need to check, double check and triple check for MALS. From what we are learning, it can take multiple attempts at same imaging, and also requires nerve block to assess. This is our next step.
September 26, 2025
It’s been a full week of school and appointments. Every week, Charlee goes to physical therapy and pain management. This week we also followed up with GI, and we officially got a referral for a MALS surgeon in Austin, TX. He will tell us what additional tests he wants done to determine if she does, in fact, have MALS. She is working hard to catch up on school work. Tonight she gets to see one of her best friends from elementary school years, and late tonight we may go to a haunted corn maze! I think I’m more excited than the teens. Getting to and from Austin will be another expense that will be ongoing for a bit. We appreciate your support. -Misty
September 25, 2025
Charlee Update: Charlee was recently released from the hospital but we were left with more questions than answers. Her pain is often unbearable. She cannot eat anything at all, so she’s back on NJ tube. NJ is a tube that goes into the small intestine, bypassing the stomach. (Since food increases her pain.). CMH did a good job stabilizing Charlee and monitoring her as she slowly transitioned over to tube. (You can look up Refeeding Syndrome for more info.)While the tube is keeping her alive, it doesn’t manage or fix her pain. The pain is now almost always constant. We had a follow up yesterday and I had messaged our GI with a request. Please carefully review all recent imaging and see if there is any indication of MALS. MALS stands for Median Arcuate Ligament Syndrome. Your diaphragm (the muscle you use to breathe) has a fibrous band called the median arcuate ligament.In some people, this band presses down too tightly on the celiac artery, which is a major blood vessel that supplies blood to your stomach, liver, and other organs.This pressure can also irritate the nearby celiac nerve bundle.GI found 1 report that noted narrowing of the celiac artery. Ding! Ding! Possible MALS. However, no formal dx yet, as more tests will be ordered. CMH doesn’t have a MALS expert, so once again, we are looking at specialists across the nation. Stay tuned! So…she’s still trying desperately keep her head above water at school in the midst of yet another medical crisis. 💔I wanted to share GOOD news too! Charlee met another senior girl who lives in KC and has MALS & SMAS just like Charlee! She was admitted at same time, and has a G tube now. Char has been saying for years she wished she could find a buddy locally…and she has. So proud of these young women. In addition, she got a couple visits from therapy dogs. 🐶 so even though hospital stays suck, we loved connecting with new buddies. ❤️She also painted a beautiful heart…it’s now hanging on her bedroom wall and it’s definitely a favorite. Sam was able to hang with his friend’s family in Colorado while charlee was hospitalized. This helped us immensely. He was in the mountains, (his therapy) and got to summit his second 14er. I was teary I was so proud of him! Chronic illness is tough for siblings too. ❤️
