Our church family set up a YouCaring fund webpage for us in 2016, as a means of helping out with our mounting medical expenses and as a way for us to keep everyone updated as to how the various treatments and subsequent transplant I underwent, were going. Below are the updates from that webpage (which no longer exists, as YouCaring was taken over by GoFundMe), which tell the story of my illness, transplant, health struggles and eventual healing!
Posted on 12/08/2016
Dawn began experiencing symptoms of GI problems in 2009. Initially, there was stomach discomfort and periodic bloating, but nothing that seemed very severe. Over the next few years, the frequency and severity of the symptoms increased. By 2011, a local Gastroenterologist was consulted and over the next few years, Dawn was tested for everything the local doctor could think of….food allergies, celiac disease/gluten intolerance, etc. and over a period of a year or so, several restrictive diets, including the FODMAP diet, were tried in an attempt to treat her symptoms. No diagnosis could be determined and no suggested treatment was successful in controlling her symptoms. By early 2014, her daily routine included being relatively comfortable in the morning, and then by evening her tummy would be so distended that she appeared several months pregnant. She would be in so much pain and discomfort that she would have to lay down all evening before going to bed, because sitting up was just too painful. At this point, her specialist referred her to the Mayo Clinic in Rochester, MN. In August, 2014, she went through 11 days of every kind of GI system testing at Mayo Clinic. The Gastroenterologist she saw at Mayo said in 40 years, he’d never seen a condition exactly like hers. He referred her to a motility specialist there at Mayo, who continues to treat Dawn today.
Ultimately, it was determined that her own immune system had created antibodies that attacked the nerves in her small intestine. This damage caused her intestine to fail to move food through it, so that food sat in the intestine way too long, allowing the good bacteria that digest food to over-multiply and result in a severely distended belly. Mayo treated the symptoms by rotating oral antibiotics to kill the bacterial overgrowth. This worked for awhile in combination with two other drugs designed to stimulate the intestine to properly function. By late 2015, the bacteria had become resistant to every oral antibiotic available, so the daily bloating could not be controlled. In February of 2016, Mayo surgically installed a tube into her stomach and thru her abdominal wall to try and vent the excess gas. This didn't help, because the gas wasn't actually in the stomach, but in the intestine and abdomen, so 6 weeks later, the venting tube was removed. Mayo identified 2 intravenous antibiotics that could be compounded for oral use, to try and control the bacterial overgrowth. These were successful for a few months, but by late May, the bacteria had already become tolerant to those antibiotics, as well. Dawn's only relief came by means of recurring diarrhea and when the symptoms were at their worst, vomiting as well, to expel the food backed up in her intestines and stomach. Because of this cycle, Dawn lost weight extremely fast.....30 pounds in less than six months. One night she had some very unusual pain that was so bad, Bart took her to a local emergency room and they quickly determined that among other things, she was severely dehydrated, so they admitted her that same night. She was hospitalized there for 9 days and got down to 98 pounds, so they started her on TPN (intravenous nutrition), as she was essentially starving. She was transferred to Mayo by ambulance for another 17 days in a Mayo Clinic hospital. During that time, a catheter was surgically placed in her chest in order to allow the safest means of receiving the TPN, once they would send her home. She had to go weeks without eating anything, both while in the hospital and for several weeks after they released her, in order to try and control her symptoms and stabilize her condition. Even now, eating or drinking anything generally results in discomfort, bloating, diarrhea and vomiting. While at Mayo, her specialist suggested IVIG infusion therapy, which would introduce a drug into her system over a period of 13 weeks to try and strengthen her immune system and kill the harmful antibodies. This had been suggested two years prior, and was submitted for insurance coverage, but was denied, and then denied twice again in two appeal processes. It has been submitted once again with research to support applying the therapy to Dawn's condition, but has once again been turned down. Because Dawn's diagnosis is so rare for normal insurance purposes, the IVIG drug is considered "experimental" and "not medically necessary" for her condition. Yet, there is no other course of treatment suggested by the insurance company, other than a risky small bowel transplant, for which they are willing to pay in excess of 1 million dollars for the surgery alone, not to mention the weeks of hospitalization after the transplant, as well as the ongoing costs of anti-rejection drugs that she would have to take for the rest of her life. Her Mayo specialist and the proposed Georgetown Medical Center transplant surgeon are both supportive of applying the IVIG therapy course in an effort to avoid the last-resort transplant, yet the insurance company is unwilling to invest the nearly $50,000 cost for the IVIG therapy to potentially save millions of dollars in the near future and for the rest of Dawn's life. The goal of the YouCaring fundraiser is to help offset the approximate $47,600 that the IVIG therapy will cost.
Posted on 12/21/2016
From Bart & Dawn-----
As we approach the Christmas holiday, we are quite overwhelmed by the amazing outpouring of support that has occurred in just the space of two weeks. As of the time of this writing, we have received an additional $1,500 in support outside of YouCaring bringing the current financial total to $24,974....surpassing 50% of the expected cost goal. As encouraged as we have been by the financial support, we are even more deeply touched by the kind comments and words of reassurance from almost 350 individuals and families who are relatives, friends, church family, colleagues, peers, and so many whom we have never had the privilege to meet personally, but who know us through Dawn's work and presence online, or from my wonderful fraternity of sports officials. There is no way we can ever express our thanks adequately. It is our sincere and ongoing prayer that the love, prayer and support in our behalf will be rewarded in successful and lasting results for Dawn's improved health. For that, we will be able to give great thanks and celebrate together. We wish everyone a wonderful and blessed Christmas.
Posted on 01/23/2017
As of this update, Dawn is halfway through the series of weekly IVIG therapy infusions, with another six weeks to go. Things have gone smoothly, & without any major complications. In recent weeks, she has been taking a few of the earliest antibiotics that Mayo had first-prescribed, & has been feeling improved, with less daily bloating & no periodic vomiting for quite awhile now. There are a few other changes going on with her GI system that we are not sure how to interpret, but we are encouraged by any change over what had been the status quo, & we thank God that lately she has been able to feel more like what used to be her "normal" self. During this time, she has been able to consume food on a regular basis....still smaller volume than what would be normal, but to be able to eat fairly-comfortably at all is an enormous blessing. Her weight has been coming back, as well, & she has regained almost 75% of what she had lost over the months preceding her long hospitalization in the fall. We don't know what physical or functional changes may actually be occurring within the intestine at this point, but we continue to pray that positive things are happening, & that they will have lasting impact to help head off a potential transplant. Thank you so much for your great generosity, & for your ongoing expressions of support & encouragement. May the Lord bless you & provide what you need for the challenges each of you faces in your own life.
Posted on 03/15/2017
We have completed the 12 weeks of IVIG therapy. There are some very positive improvements in recent weeks, including Dawn's ability to eat much more regularly, & a reduction in the volume of TPN (intravenous nutrition) that she has been receiving. She has regained her lost weight & is holding it very well at this time. Antibiotics still seem to be medication that is necessary to minimize bloating & abdominal discomfort, however she has managed a few weeks without them during the IVIG treatment. We are returning to Mayo Clinic the week of March 20 in order to take some tests again that will help the specialists evaluate/quantify what progress has been made, & to help determine the course of treatment from here. We are SO thankful for these great blessings, & putting complete trust in God for Dawn's path to healing. Thanks to everyone who has continued to remember Dawn's condition in their thoughts & prayers during these many weeks of treatment.
Posted on 04/27/2017
Sorry that it's been awhile since the last update.........Dawn did have a somewhat rough month right after the Mayo trip. It appears that the 4 weeks she had to go without the IVIG infusions were a big step back for her. She was unable to eat as much as she needed to, & lost some weight once again, which she didn't need to lose in her condition.
We restarted the IVIG infusions after the 4-week break, once again without any assistance from insurance at this point. However, there’s really not a choice, as it clearly works to improve her condition. As long as the IVIG therapy in conjunction with antibiotics sustains her well enough that it delays or precludes the need for a transplant, that will be the preferred course. It is likely that if insurance continues to deny coverage indefinitely in spite of the positive impact that the IVIG therapy has on her condition, we may have to resort to a hearing before the Kansas Insurance Department to try & force the insurance coverage issue. We pray that the insurance company will acknowledge the benefit & necessity of the treatment for her condition, so that it doesn't come to a formal confrontation.
A peripheral issue………at Mayo, the staff did remove the drainage tubes from her stomach & small intestine. The incisions are supposed to heal naturally without any sutures. The intestinal “hole” did so in less than a week. The stomach/abdominal hole has not healed… She has drainage from the site almost every day, sometimes small amounts, sometimes a bit larger, depending upon the rate at which her digestive system is processing. This requires her to keep bandages over the wound to absorb the leakage, & it can’t be left in contact with the skin very long, as it’s digestive fluid & eats away at her outer skin layer, when damp for any extended period. Mayo has advised that this incision should have already closed, but apparently with the stomach wall somewhat “fused” to the abdominal wall because of the amount of time the tube was inserted (about 6 months now), healing hasn’t occurred. Mayo has advised that if it’s not closed up by about May 12, it may require a short return trip to Mayo for a minor surgery to detach the stomach wall from the abdominal wall & expedite healing.
We are praying that Dawn will regain weight & function well enough with the IVIG therapy & antibiotics, such that her TPN feeding/IV catheter could be removed from her chest. She would pretty much need to have no dependence on the TPN for maintenance. Also, the potential need for a transplant would have to be minimized, as they would not want to remove the catheter, & then have a need to re-insert it in the near future in response to the failure of ongoing therapy or in anticipation of a necessary intestine transplant.
Posted on 06/08/2017
We are long overdue for sharing an update with you, but it’s been a challenging six weeks or so, since the last update. We had to make a return trip to Mayo Clinic in mid-May in order to have them internally-cauterize & clamp the incision from the G-tube that was removed, because the site would not heal on its own. Additionally, as we restarted the IVIG infusions, it was suggested by her doctors that we try to stretch the interval between infusion treatments, in order to determine whether her system could tolerate infusions less frequently than weekly. We stretched to two weeks once & were in the process of a second 2-week stretch & things did NOT go well. Between Thursday, May 25 & Monday, Memorial Day morning, her abdomen became greatly distended, she proceeded to vomit 12 times in those three days, & the vomiting did virtually nothing to relieve the distention. She was not able to keep any fluids or food down orally during this time & began to become quite dehydrated & lacking any real nourishment. By Memorial Day morning, we became concerned enough that we decided we had to go to the emergency room at our local hospital, & after consulting with Dawn’s Mayo specialist, then did so. She had the unfortunate experience of another nasal-gastric tube insertion down her throat for the purpose of pumping out stomach & intestinal contents. This ran consistently Monday all the way into early Wednesday, & she got great relief from it, though the pain from the tube in her nose/throat was excruciating. She was placed back on TPN (full intravenous nutrition) that same Monday evening due to her weakened & dehydrated condition, & in consideration of the fact that she had lost about 60% of the body weight she had regained from December into March. (She went without ANY TPN from mid-March until now, so this was a big step back.) They allowed her to have some oral liquids on Wednesday & she did well, so she was discharged from the hospital Wednesday evening, the 31st.
Unfortunately, even though she is eating and drinking normally(though somewhat less volume), she will be back on daily TPN for an undetermined amount of time, until she is able to regain substantial body weight. We have made the decision to accelerate the IVIG infusions back to weekly (still without any contribution from insurance, which STILL denies the treatment as “not medically necessary”). Clearly, we and all of Dawn’s medical providers disagree with this. Mayo will be submitting a pre-authorization for another 12 weeks of IVIG, which we expect will also likely be denied, & at that point, Mayo would conduct a peer-to-peer review conversation with our insurance provider’s medical director to try & demonstrate/convince as to the medical necessity of the IVIG treatment in order to protect & maintain good health for Dawn, & continue to try & avoid a small intestine transplant. We are praying that experiences over the last several months (especially since March when there was a 4-week gap in IVIG treatments & the most recent month, when there were only two treatments, spaced by 2-week periods each time) will provide clear evidence that the IVIG treatments ARE medically necessary. Both times we were having less infusions, things got considerably worse for her, so we’re hopeful that this will convince our insurer to change course with us. We are also filing a formal appeal with United with respect to the last six months of IVIG infusions. If that is unsuccessful, we have received communication from the Kansas Insurance Department advising how to proceed with an Independent Medical Review of Dawn’s case that could force the insurer to provide coverage & pay benefits for the IVIG infusions. We do not want to resort to this, but may have no choice, as we cannot afford to pay for the treatments for any extended period of time from our own remaining resources. If ANYONE has any connections inside United Healthcare that you think might be of any use or help to us as we try to appeal to them to see the logic of the “medically necessary” designation, please don’t hesitate to contact us.
As it stands right now, we’ve already incurred the expense of the original 12 IVIG infusions for $47,600 as well as a second round of 12 more infusions (we’re in the middle of this group of infusions right now), for an additional $47,600. That puts our current financial obligation at $95,200. This is why we’re praying — and working(!) — so hard to try and get future the infusions covered by insurance, as we certainly won’t be able to keep this up much longer without that coverage. This is why we’re also beyond grateful for all of the assistance you all have provided to us with your extremely generous contributions! The nearly $31,000 that has been raised so far, is a huge chunk of the $95,000 that we owe, and we consider it a massive blessing. So, THANK YOU from the bottom of our hearts!
We also appreciate the outpouring of love & prayers as this challenging season of life continues. We look forward to a time when Dawn can be in a stage of health maintenance……..whatever that ultimately means, but that enables her to consume food normally without IV nutrition & enjoy life much more.
Posted on 07/19/2017
The “battle” over insurance coverage has, for all intents & purposes, ended. Just today, we were informed that they have denied our final appeal for coverage for ongoing IVIG infusion therapy for Dawn. At this point, we have decided we can no longer pay out-of-pocket the $2,800/week for Dawn’s infusions. Apart from that, Dawn's Mayo specialist, called us & we had a long chat with her. She feels like she has no other options to offer us other than the transplant now. She had a discussion last week with the transplant surgeon at Georgetown about Dawn's case and they feel like the IVIG effect of strengthening her immune system against the bacterial overgrowth may actually make it harder to match her with an organ donor. Their thought is that if we stop the IVIG, as it drains out of her system in the coming weeks, it may increase her chances for a good donor match. As much as anything other than direct healing, in recent weeks we have been praying for clarity about what direction we should go, & we feel that this latest development serves to confirm that we should prepare for transplant. We are not afraid, but at peace about the circumstances, & we continue to trust the Lord for Dawn’s long-term health. Our prayers are now with the staff at Georgetown, to be prepared to execute a transplant that will be as perfect as possible, considering humans are involved in the process.
From a process standpoint, we could get a call with an acceptable donor at ANY time. We have 1 hour from the time we’re notified to make a decision. We are in no way obligated to take any potential donor organ that comes along, & we can be advised of every aspect of a potential donor’s complete history---medical & otherwise—in order to evaluate a donor organ. Passing on one doesn’t adversely impact the ability to get another opportunity in any time period. Ideally, we want to find what Georgetown’s analysis would deem the best match possible, keeping in mind the time factor & the likelihood that Dawn’s own intestine will probably continue to decrease in its efficiency of function, which is already “inadequate” at best. Once we would accept an organ, we would have 48 hours to be onsite at Georgetown for the operation.
Dawn would require hospitalization for a minimum of 3 weeks, then she would be discharged, but required to reside within 30 minutes of the hospital for 4-6 months from the date of the operation, totally dependent upon how rapidly she recovers. (Avoiding organ rejection is of tantamount importance, so Dawn will be regularly-tested & monitored, & any indication of problem with rejection or function of the transplanted organ must be dealt with immediately.) We will have to secure an apartment or extended-stay hotel for this required period. Our tentative plan is for Bart to try to be in KC for 2 weeks of each month for work purposes. While Bart is in KC, we have volunteer friends/family who would be with Dawn in DC. The insurance company allows us $10K for all transplant-related travel & housing, so that will be a challenge. We will try to use frequent-flier miles & perhaps friends will donate miles for Dawn’s traveling “nurses”, if possible, in order to try & minimize what comes out of our pocket in light of the high housing/hotel expenses that we will incur & should well-exceed the $10K over the 4-6 months.
In theory, we could get a call at any time that requires our response. It could be a few weeks……….it could be a year. We don’t know, but God knows. We're praying over all the details surrounding Dawn living in DC for 4-6 months, and for Bart and family/friends traveling back and forth to stay with her. And we're praying for the organ donor and their family, because at the point we get a call for an offer, a person will have passed away, and we are sensitive to that family's inevitable grief and loss. We are grateful for the prayers & concern of so many people who are persevering with us during this challenging season of life, & we look forward to the time when we can celebrate Dawn’s improved health & vitality by God's grace.
Posted on 10/27/2017
Dawn & Bart received the call from Georgetown Med that a near-perfect donor match was available & they have accepted the donor organ. They are on their way to Washington, D.C., for the planned transplant surgery. Please join us as we pray for them. Below are some specific things we can pray for both now and in the coming months. There are also some specific needs listed below, in case you are wanting to help in some way. Know that they are so appreciative of all the support and prayer they have received already and will continue to receive. They've asked me to thank you from the bottom of their hearts!
Things to pray for:
Safe travel for them, as they make their way to the hospital for the transplant
For wisdom & alertness for everyone involved in the prep & actual surgical procedure (it
commonly takes 8 hours to complete the transplant procedure)
For Bart as he waits during the surgery
For a successful transplant
That Dawn's body will not reject the organ, with the help of anti-rejection medication
For Dawn's quick & complete recovery, and for this new small intestine to be accepted by her body & operate properly for decades to come.
That Bart will be able to locate safe, clean & suitable living accommodations for Dawn & her caregivers for the extended 4-6 month period that she will be required to reside close to Georgetown Med. (within 30 minutes)
For safe travel for all of the friends & family that will travel to Washington, D.C., during Dawn's stay to care for her when Bart has to come home every two weeks, to accommodate his work schedule.
For the donor family.....they've now lost a loved one and are surely grieving that huge loss.
Considering air travel for Bart and the other caregivers, accommodations & daily expenses - including the elevated living expenses in Washington, D.C., the transplant travel allowance granted by the insurance company will be insufficient to cover the costs of travel from Kansas City.
Money donations would be helpful.
Donations could also be made in the form of airline miles for either American or Southwest Airlines. If that is something you would like to contribute, please let us know through the YouCaring site and we can connect with you to make the appropriate arrangements for gifting the miles.
Finally, a small note pertaining to gifts in the hospital, Dawn will be unable to have fresh flowers in her room because of infection risk. Everyone was so sweet to send many flower arrangements when she was in the hospital last, (and she loves them so!!); however, this time she will not be able to have them around. Balloons, fake flowers and cards are all great, just no fresh flowers.
THANK YOU so very much for praying!
Posted on 10/27/2017
Dawn and Bart will be at the below address for the transplant.
3800 Reservoir Rd NW
Washington, DC 20007
Quick reminder Dawn is unable to have fresh flowers for months after this operation because she will have a compromised immune system and there is risk for infection. Balloons, cards and the like are great. Just no fresh flowers. Thank you!
Posted on 10/28/2017
Thank you for praying and all your support over the past 24 hours!
Dawn is out of surgery! Bart has talked with the Dr, whom Bart called his current earthly hero!
This is what he learned.
1) It was a perfect match. The new organ was the ideal size and pathological match. They were able to close her (no swelling!), and remove old tummy scar tissue.
2) Old intestine was in "awful" condition. He said it was bound to FAIL at some point in the not-too-distant future.
3) Hickman catheter was removed. She now has a new temporary IV line in her neck that should be short-term.
4) Everything went perfectly with the procedure. Not a single hiccup! Praise God!!
5) Immediate Prayer Concerns: For the next few days, praying no clotting or bleeding.
Thank you again for praying! Praising God for such a great report regarding the operation!
Posted on 11/03/2017
Dawn has been doing really well with recovery thus far and even has been up out of bed walking.
Dawn's chest X-ray yesterday identified some stray air under the diaphragm. After a CT scan for a closer look, Dr. decided to do an emergency exploratory surgery this morning. They wanted to determine whether there was a small misconnection where the intestine was joined or leakage around her GJ tube exit site. Praising God that everything went smoothly! After the surgery, Dr. said, "Everything is perfect!" He said it was likely just leftover air from original surgery, but better to be certain.
Grateful for the Dr's and staff taking such good care of Dawn and Bart. Bart says their care in the ICU has been marvelous.
Thank you once again for your outpouring of love and support for the McVey's!
Again, if you'd like to send a note, you may send to this address. No flowers allowed for transplant patients.
3800 Reservoir Rd NW
Washington, DC 20007
Posted on 11/06/2017
Hello Everyone! I'm happy to share a wonderful update from Dawn herself!
Hello from our room on the transplant floor! They moved us out of the ICU over the weekend but I've had a lot of issues with pain since we got moved so it was a rough weekend. However we're getting some more of the pain under control today and do you see what they just delivered to me?! My first lunch tray of clear liquids!! That means if all goes well, I'll progress to actual food (that you chew!) in a couple days!! And get this, they say we're on track to get out of here possibly this coming weekend!! We are learning over and over again not to put God in a box! They had told us to plan on 3-4 weeks in the hospital so I'd been asking God to shoot for 3 weeks and here He goes and maybe shoots for 2 weeks!! The Bible says that He can do more than we can ask or imagine and we have been seeing that again and again during this whole process. He just keeps blowing us away with His faithfulness and even just His goodness to us in all the little details. They've all been telling us we've got the best room with the best view on this floor. We are just feeling so blessed and beyond grateful. Still praying we can get the pain fully under control but also that we would just rest in His perfect timing with everything that's yet to come. God's plan is clearly so much better than ours ever could be! Thank you for continuing to pray for us and for sharing in our joy! Much love to you all!!
Posted on 11/18/2017
Dawn has been released from the hospital and is now in their cute little apartment that will be their home away from home for the next few months. She continues to make great strides in recovering and in fact, she has some really awesome news to share!
An update straight from Dawn:
"There. Are. No. Words! I got the all-clear to start eating solid foods!!! Granted, It's a very specialized small intestine transplant diet right now, but that will change over time until I'm eating pretty much like everyone else. And for a person who hasn't eaten food in five months, the list of foods I can already have right now feels like a huge smorgasbord! We cried in the transplant clinic and when we got "home", we stood in our little kitchen and cried over those first bites of pretzel! We are overcome with God's goodness and His mercy! He has brought us to this place and we've been thanking Him over and over, since they gave us the news! We have the whole weekend stretched out in front of us now, with no appointments until Monday so we can just rest up and have fun trying foods I haven't had in a long time! Obviously, we'll take it slow and I will have to eat a lot of small meals and snacks to stretch my stomach out again, but we are so looking forward to the weekend in our cozy Airbnb, enjoying the thrill of chewing things (something else I will never take for granted!!). As you can imagine, we are OVERJOYED!"
Dawn and Bart had a sandwich night tonight, and as you can imagine, Dawn was thrilled to be able to bite into a sammy and chew!
Now that Dawn is released from the hospital, any mail you would like to send can be addressed to the following P.O. Box:
PO Box 25322 Overland Park, KS 66213
Bart and their other loved ones will be traveling back and forth to trade places so Bart can work. Any mail delivered to the P.O. Box will be taken to Dawn when they trade off every couple weeks.
Thank you for all of the support you all have shown. The McVey's want you all to know how much they sincerely appreciate everything! And thank you for praying Dawn all the way through to complete healing, she is well on her way! Praising God with them!
Posted on December 7, 2017
An update directly from Dawn and Bart:
We offer endless thanks to all of you for your support---financially through money contributions or airline miles (we've found Southwest is much more accommodating than American in that respect), & for those of you following Dawn on Instagram, she is consistently overwhelmed by the kind words, encouragement & prayer support. She is now posting daily, for the most part, when her clinic schedule permits at https://www.instagram.com/dawnsing/?hl=en . If you have not followed there, her progress is nothing short of miraculous to this point. She is eating a very diverse menu now, with a much smaller group of items remaining "off-limits", & she is much farther ahead in this respect than anyone, including the transplant staff could have imagined. In fact, yesterday at 5-1/2 weeks post-surgery, the Transplant Coordinator told her that she has never seen a transplanted intestine doing as well as Dawn's is at this juncture. We look forward with great anticipation to the day in the coming months when they will release her from proximate clinic care in DC to return home to Kansas City.
Posted on February 12, 2018
Today, just over 15 weeks after the transplant surgery, Dawn had her final regular clinic appointment and it is confirmed that on Tuesday morning, February 13, the transplant team will perform surgery to connect the small intestine and place it back inside Dawn's abdomen for good! If everything goes as planned, she will be hospitalized for less than a week, then discharged to their temporary quarters in DC. Her GI system should immediately begin to function in a normal fashion and they will monitor her on an outpatient basis at Georgetown for some period of weeks before she would get the all-clear to go "home-home". We all thank God for this tremendous news and the remarkable progress of her recovery so far. Because of the amount of time in DC for this entire process, & including the high cost of accommodations rental in the D.C. area, commuting expenses & recurring travel expenses between Kansas City & DC, the McVeys will far-exceed the "travel allowance" granted by their insurance provider for the entire transplant process, and would be grateful for any additional financial support through the YouCaring site. They wish to convey their sincerest thanks for everyone who has already supported them in this manner, &also through donations of airline miles, gift cards, etc....... even more so for the outpouring of well-wishes & continued prayer support. Dawn' more-frequent Instagram updates remain available at https://www.instagram.com-_-dawnsing-_-?hl=en
Posted on April 5, 2018
Final Words from Dawn & Bart---
We will soon be two months past the final surgery. It is a long healing process for the intestines to work together normally, because besides the introduction of the new small intestine, the large intestine has been mostly inactive for a very long time. It is awakening from minimal function as part of the normal GI process. Food consumption is now mostly normal, with only some restrictions on foods that are still too fibrous or gaseous, & others that represent an elevated risk of harmful bacteria for a very limited immune system. Rediscovering tastes, flavors & textures from what seems like a longer time ago than it's actually been has been a joy for both of us. It is WONDERFUL to be sharing meals together again, & to be able to have fellowship with friends over food is something we missed SO much. It's all been given back to us, & we don't take any of it for granted for one second. Once again, we cannot express enough our thanks to everyone who has sacrificed for us financially in any way, & for the untold volume of prayers that have been lifted up in our behalf. God has truly performed a miracle in our lives that we could not have fathomed even a few years ago & we trust that you know you are part of that miracle. Our prayer is that each of you will experience abundant blessing that meets your need from Him, just as you have been part of His blessing to us. This journey has confirmed to us that our choices & desires may not necessarily coincide with His plans & timing, but ultimately His ways are far above our own. And most of all, He is faithful & able to provide the strength & perseverance to meet every trial or challenge. Please feel free to follow Dawn going forward on Instagram at https://www.instagram.com/dawnsing?hl=en . You do not have to be a member of Instagram to read her posts at that address. She will continue to update there often about her healing progress, papercrafting work, & day-to-day life in general. God Bless!