Fall Season Update

Ashley started her senior year at the end of August.  It is hard to believe she is a senior and that her brother Christopher is at the same school this year.  She is taking 6 credits to graduate and is working with two Homebound teachers.  The dedicated Debby Villers is one of those teachers, who continues to help her with math.  She actually did not need a math course to graduate but wanted to take a math class to keep up her skills.  Short term memory loss and brain fog are two of the symptoms of POTS, so she is hoping to alleviate some of that with a continuation of her math skills.  Definitely a sign of her determination as math is not her favorite subject and many other electives would have been easier to take instead!!!

About three weeks into the school year, Ashley woke up on a Monday morning and said that she felt as bad as she did when she first had POTS.  I knew that meant she felt REALLY poorly and called the White Glove nurse practitioner to come to our home.  That exam did not reveal anything of significance, but Ashley woke up later with a very high fever of 103.7.  I knew that indicated something more serious and when her fever continued to stay high, David took her to the urgent care that night.  As soon as the doctor there realized how high her fever was and that she had a port, she sent them directly to the ER.

At the hospital, she was immediately placed on IV antibiotics and given fluids while blood tests were performed.  They were admitted to a room for Ashley's 5th inpatient hospital stay since March.  The timing of this stay was particularly poor as Ashley and I were scheduled to fly to Rhode Island for my brother Matthew's wedding on Wednesday!  We were determined we would still be able to go, and Ashley made it very clear to every doctor she saw that she would be at that wedding!

As the week progressed, however, that trip did not materialize.  We traded the excitement of the trip for tears of disappointment.  Blood tests revealed that there was a staph infection in her port, which led to pneumonia.  This meant that she would be treated for at least 14 days by IV antibiotics since the line from the port went directly to her heart.  This also meant that the port would have to be removed.

So, instead of being at the fairytale wedding, Ashley was scheduled for surgery during the time the wedding was taking place in Rhode Island.  Even though David and I had discussed the idea that I would make the trip anyway, I ultimately decided I could not do that and feel comfortable enough being away from Ashley given her condition.  We both truly hated to miss the wedding but are grateful for the beautiful photos!

Ashley responded well to all of the antibiotics, thankfully, but the hospital stay seemed to last forever.    She was inpatient for 21 days and also had to begin eating by mouth again since the TPN feedings had been via the port and since her GI tract was shutting down since it had not been used for so long now.  She also had her fourth feeding tube placed and started using formula feedings to supplement eating by mouth.

Once we were finally home, she focused on her school work and college applications, which she had amazingly kept up with to some degree while hospitalized.  She even managed to finish the first quarter on time due to her hard work AND found out that she was accepted to Baylor University for next fall.  That news was definitely the highlight of the fall as she has worked so hard to achieve that goal despite feeling poorly for 3 years.  Her dad and I are so proud of her!

We continue to search for answers for the constant severe abdominal pain that is made worse by eating or taking medications.  Prior to the hospitalization, Ashley and I had traveled to Kentucky to see a doctor there that places gastric pacemakers.  The doctor felt like Ashley would benefit from having one but would place a temporary one with a scope before doing surgery to place a permanent one.  While this option may eventually be used, we are trying some less invasive techniques first.

There is discussion of Ashley having her gall bladder out and/or getting a permanent feeding tube in her stomach.  She is now on her 5th feeding tube since the 4th one placed during the hospital stay became lodged against her stomach wall, and she claims this one is her last.  The side effects of having a tube in her nose are becoming more than bothersome, and now that we have finally found a formula she can tolerate, the stomach tube may be possible.

Today, she is receiving a PICC line in her arm in order to get hydration therapy and have blood draws.  Her veins are so very difficult to find and cannot hold in an IV for any length of time.  She benefits so very much from the extra fluids but is not yet far enough out from the infection to receive another port.  The three days straight of fluids at a time should alleviate the excessive passing out spells.

She has a few more colleges she wants to apply to even though Baylor has been her top choice for a while.  Her senior year has not been what she has hoped for thus far, but we pray every day for the next day to be better and for answers to be revealed.  There seems to be something else going on in addition to the POTS so finding out what that is remains on our minds.

Thank you so much for continuing to pray for Ashley's healing and continued comfort.  We all need strength and peace to get through each day and choose to always be hopeful that her health will be improved sooner rather than later.

six

1) Thank you to all of you who prayed for me to survive going to one period of regular school in order to be enrolled in Homebound. It was a difficult morning, but we made it through. It was nice experiencing the first day of school with my three brothers-taking pictures, dropping the twins off at middle school, etc. This is my prayer for senior year, and if you could pray it for/with me this year it would be much appreciated:
Dear Lord, may senior year be a year where I grow closer to You & bring hearts to You wherever I may be. May I touch people's lives by encouraging and inspiring them by Your joy that radiates through me. May I use the leadership role given to me as a senior in a positive manner, a manner in which glorifies You by setting a good example. When this special year comes to a close, may I be thankful for the memories made & lessons I learned. Whatever You may have perfectly planned for me after high school, may I be at peace with what happens & wherever You may or may not take me. My senior year is Yours Lord, Amen.
2) Yesterday afternoon, we returned to my main doctor, Dr. Patel after many months (missed monthly appointments due to hospital stays in other cities), who I actually missed dearly. I joked with him that he'll be in my bridal party one day because he's responsible for keeping me alive these last  few years-and probably will be for many more. We had an awesome appointment with him, he spent a hour and a half with us (just another reason he's the best), he addressed all of our issues we had and he spent time thinking out loud of other ideas we could try to improve my health and overall quality of life.
3) This morning, I am going to my pain management doctor to have several, several trigger point injections from down both sides of my chest down to all over every area of stomach. He also will be giving me nerve blocks for my facet joints at three disks at my low-mid back. I will be partially sedated (thank goodness) but am still nervous about remembering the procedure and the pain I may be in during and after. Thankfully, when we had my initial pain doctor appointment last week, it went SO well and was truly an answered prayer that we've found a doctor who wants to help me manage my symptoms and is a strong Christan man with a big heart, so I trust him and what he and his staff are doing. I'm also nervous about how I'll recover from the anesthesia, even though I won't be put all the way under, I have had issues recovering in the past. Our hope is that these injections will take away some of my pain-for some people it lasts a few days, others a few weeks, others a few months. However, with the amount of pain I'm in (and it's been increasing) any type of relief would be wonderful.
4) On Friday, we meet with the surgeon about the GJ tube, which with Dr. Patel's blessing, will almost certainly put in, unless the surgeon says otherwise. Dr. Patel explained to us why this tube would be different than a NG/NJ and why it would help me. Hearing his words of reassurance was a great blessing and provided me more comfort about the surgery. We will learn more details at our appointment Friday, and three doctors have already said the surgeon we're going to is excellent so that was also reassuring to hear. When I get the surgery will depend on when the surgeon is able to fit me in and also when it fits in with our schedule, as you have to spend time in the hospital after the surgery and my body recovers very slowly, so we need to find a time where my parents will be available enough to attend to me. The maximum amount of time it's safe to be on TPN is running out (although it's never really safe to be on TPN in the first place) so this tube needs to be placed soon because as soon as the weekly labs begin showing that the TPN has damaged your liver, you must get off it right away and will have irreversible damage in your liver and will live your life with a chronic liver disease.
5) On Tuesday, we are headed back to Texas Children's Hospital in Houston for some appointments. We have a cardiologist (who specializes in POTS) appointment (every new doctor we goes to asks who our cardiologist is and we knew it was smart to have one for every POTS patient so I'm finally going to one Tuesday morning) and I'll also have an EKG. Following that, I will go to an ophthalmology appointment, as I've been having some issues with my vision. On Wednesday, we will return to a POTS neurology specialist who we saw a month ago for a follow up.
6) Although it's only the second day of school, I'm already having work roll in on top of me still having to finish my college applications. (I haven't turned a single one in yet and I'm worried that someone could be taking my spot at a college I want to attend to.) Both college applications and school work (yes, you do have to work hard senior year...at least the first semester hehe) are stressful and with all that's going on with my body those tasks are increasingly difficult for me.
Those are my top six prayer requests I ask ya'll to pray for right now, but know there's several other issues going on in my life as well. I continue to try my best to make the best of each day and approach every moment with a smile on my face and a positive attitude. I really will do more in depth blog posts about what God has been teaching me lately and what's been going on in my health journey, I just can't give a time frame. Thanks for all of you who continue to pray for me and support my family & I, we are grateful to know we have a selfless, caring community ready to help in many ways (including prayer) whenever asked. What an amazing way to witness the body of Christ in action.

adios nj tube

After multiple complications with several nj tubes, today my mom & I went to the ER and my GI decided to remove my nj tube and not insert another one. We will be meeting with a surgeon as we pursue the possibility of a surgically implanted GJ tube. (I am still no longer able to take anything by mouth without extreme pain and am down to 110 pounds. I've been put back on TPN a few weeks ago, which isn't good, since I couldn't tolerate any nj formula feeds.) Prayers would be greatly appreciated for wisdom, faith and discernment as my parents, doctors and I continue to make choices and decisions in our mission to get me healthy. Once things calm down (College applications, lots of doctors appointments, boys starting football, my dad's upcoming family camp and school starting Monday is keeping my family and I very busy!) I'll do my best to write a complete blog update, because a LOT has happened since my mom wrote the last real blog post. Hope everyone has had a great summer!

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God will be with you wherever you go." -Joshua 1:9

New News from Houston

We were home with Ashley for about a month prior to making our fourth hospital stop in Texas since Spring Break.  Our time there was filled with the end of school madness that always comes with four kids but was made more intense by Ashley's increased pain, fatigue, and malnourishment, coupled with the fact that she was very far behind in school and desperately wanted to finish on time in order to have somewhat of a summer.

Her pain increased due to the feeding tube formulas not being tolerated by her digestive system and especially by having the NG feeding tube replaced by the NJ feeding tube.  (The NJ tube goes through her stomach and into her lower intestine, thus, bypassing her stomach.) She had weaned herself down to a low dose of the pain medicine that was necessary after the NG was pulled out of her stomach and the NJ was placed in below her stomach.  On Thursday morning, June 12, however, she woke up with an extreme, unexplained abdominal pain and immediately needed a higher dosage of pain medicine. 

Since she had begun the fourth formula the day prior, we surmised that the pain must be due to an adverse reaction to that formula.  We stopped that formula and began to run Pedialyte through the NJ.  By Sunday, though, the pain was increasing day by day, and David and I decided that I should drive her to Houston to the ER at Texas Children's Hospital.  We arrived there at 7:00 pm and were promptly given a bed in an ER room since Ashley passed out in the triage room.  After checking the placement of her NJ via an x-ray, starting her on fluids, and making her pain more tolerable, the attending ER doctor said that Ashley would be admitted overnight.  We arrived in our room upstairs at 3:00 am.

The next morning began with a pediatric hospitalist resident doctor coming in to assess Ashley at 6:45 am.  The resident doctor reported to her team led by the attending doctor, Dr. Han, and they all came by later that morning.  They were interested in finding out what previous tests Ashley had received in San Antonio, and we expressed an interest in having certain specialists on the medical team, based on what doctors in San Antonio had recently recommended.  This process seemed to move slowly the next couple of days, while Ashley's pain increased and lack of nutrition continued. David realized how helpful it would be to come to Houston very early on Thursday morning, so he dropped everything else, got our three boys squared away with neighbors and friends, and came to Houston to be with his girls.

He arrived early Thursday morning, and we were thrilled to see him!  Before he arrived, our previous night had been a long one due to Ashley's pain and due to her port leaking and having to be deaccessed and then reaccessed.  The neurology team examined Ashley later on Thursday morning and met with us with recommendations. 

The attending neurologist, Dr. Wolf, said that Ashley was a candidate for receiving IVIG treatment, in order to give Ashley some new, healthy antibodies in her blood to overpower remaining old, unhealthy antibodies in her blood, to better fight infection.  We also learned that Ashley would have some GI testing on Friday and GI motility testing on Monday.  Overall, that day ended, leaving us all feeling more hopeful than we had felt in many, many months.

All that hope was erased the next day, however.  Dr. Wolf had discussed Ashley's case with another neurologist here at TCH.   That doctor said that he had followed the 4 patients on a long term basis that Dr. Wolf had given IVIG treatment to on an inpatient short term basis, as well as 9 other patients from the Mayo Clinic, and found that those 13 patients had not experienced much improvement in their quality of life.  However, Dr. Wolf indicated that she was still willing to give the IVIG treatment to Ashley and even said that she would give the treatment to her daughter if she was in the same state as Ashley.

We also met with Dr. Chimpintazi, a pediatric GI doctor that specializes in motility issues.  He indicated that Ashley was not in fact a candidate for the scheduled motility testing on Monday.  He said this because the motility testing is basically a two day test that requires an uncomfortable endoscopy and colonoscopy on one day and then a painful six hour motility test the next day. 

He was concerned that the pain would be so great during those two days that Ashley would not be able to survive without getting pain medicines that can skew the results of the motility testing.  In addition, he said the fact that Ashley is malnourished may skew the motility test results.  Finally, he mentioned that since we were considering IVIG treatment for Ashley's POTS, that we may put Ashley through unnecessary pain with the motility testing, if in fact the IVIG treatment worked for her.  He said that he would not have his own daughter undergo the motility testing in such a situation.

So, despite the fact that Ashley had a painful repeat GI test on Friday that may have yielded some new information, we began the weekend feeling very defeated and even more discouraged.  Ashley's pain continues to increase on a daily basis, and we still don't have answers as to what is causing her abdominal pain. 

In the meantime, we have pushed for Ashley to have a couple of tests run for something called Mastocytosis.  These tests have to be sent off site, out of state, so a week is a minimum time frame for results.  We also are waiting on the hospital here to find out if the IVIG treatment will be covered by our insurance.  The treatments cost any where from $20, 000 to $40, 000 per treatment (that is not a typo) and are usually done once a month, for perhaps several months, if positive results are seen after the first treatment.  We must also find out if Ashley can continue to receive these treatments in San Antonio.

Obviously, your prayers are still needed.  Pray for Ashley to be comfortable and pain free.  Pray for the doctors here to keep searching for answers. Pray for David and me to be rested, strong, and discerning during this most stressful and completely draining time.  Pray for our three boys, who are often living without their parents present and who are often living with distracted parents when we are present.  Pray for God to be with all of us and for this never-ending storm to end, once and for all.

And, at the risk of sounding like a broken record, tightly hug your children and fully treasure each and every moment with them.  Enjoy watching them compete in the sport they love, enjoy listening to them play their instrument of choice, enjoy watching them hop in a carload of friends to go out and have a night of fun, enjoy taking them to the vacation destination of their dreams, enjoy treating them to their favorite restaurant in honor of their birthday, enjoy traveling around the country to visit their preferred colleges, and enjoy the carefree life that comes with having healthy children.  David and I would give anything, and I mean ANYTHING, to have those moments once again with Ashley....

home

When David ended his post titled "Nerve Pain Is A Very Tough Thing", it seemed that Ashley's stomach pain was related to her nerves.  His time here in Dallas was ending after being here with Ashley for 9 days, and my time here in Dallas was beginning for 11 days.  There was one day in between when he left and I arrived that we transitioned the medical care duties from one parent to other.  There is so much information to be learned and shared after one of us has spent an extended period of time with Ashley that it really does take at least one full day to pass all of that information along to the next parent to successfully stay with her.

Before he went back to San Antonio, David and I also toured another medical facility in Dallas that offered more long term care vs. the acute care that she is receiving at CMC.  She was to work on getting stronger physically in order to transfer to that facility after about another week at the acute facility.  She would need to sit for about 10 hours each day for that program in order to be the most successful, so CMC would begin to push her even harder physically.

However, the more they pushed her in that regard, the more her body would rebel.  Four days after David had departed, she had a 5 hour episode.  Her longest one ever!  She was also continuing to pass out and was even doing so more frequently.  The day after her marathon episode, she passed out 21 times, all at different points throughout the day.  Walking to the restroom, standing up from a sitting position, sitting in a chair, working on homework, being pushed in a wheelchair, sitting in the bathtub, working hard at PT, screaming out in pain, etc.  The increased physical activity seemed to make the episodes and passing out even worse than they were previously.

When it became clear that Ashley was not going to be able to progress fast enough physically in order to attend the long term facility here, David and I discussed the possibility of bringing her back to San Antonio.  We decided it was in her best interest for her to go back home for awhile to regain her physical strength.  She would also be expected to do more for herself since we had decided to temporarily move her bedroom downstairs off the kitchen.

The stairs on our home had limited her self-care skills drastically, since she had the port surgery in Jan. especially.  For instance, because she had so much pain since the surgery, she was not able to come downstairs hardly at all.  We would have to bring her water and food often since the only way she could get down the stairs was if David carried her.  Add the pain from the surgery with the frequent and unpredictable passing out and one can see why having her on the stairs is just a terrible accident waiting to happen.

So, Ashley, Sadie, and I are scheduled to drive back to SA today.  We are waiting to be discharged from CMC in Dallas and plan to be on the road by 4 pm.  Our family will be reunited once again after many separations the last couple of months.  Ashley will be included in more family activities and family time because she will be downstairs where the rest of us are the majority of the time.  She will be able to get outside more often without the stairs being a barrier to that.  She will be able to go more places since she will only need to walk a short distance to get in the car from the front door to the car on the driveway.

However, she will have to be VERY disciplined about continuing to build her physical strength after becoming so de-conditioned.    She will be having PT and OT daily in the home.  She will continue to be fed through her NG tube that goes through her nose to her stomach while we continue to search for why she cannot eat solid food without incredible pain.  She will have to use her pain management coping strategies to survive her three hardest times of the day.  She will use these when it takes her an hour and a half to take her morning medications because of the pain.  She will also use them to help her endure the intense pain caused for the next hour and a half when she eats three bites of mashed up banana.  She will definitely have to use them at night when she tackles 2 hours of extreme pain when she takes her bedtime medications.  And, she will also have to wrap up school work as her junior year is quickly coming to a close.

As a result of all the things that she has to work on and she has to cope with, she will be limited to how much she can socialize with her friends.  This will be a hard restriction for us to enforce and for her to accept since she has not seen much of her friends the last couple of months and since she is such a social creature.  However, it is in her best interest to limit these times, so she can continue to become stronger and so she can focus on doing all that is being expected of her in order to be discharged by the doctors from CMC.  She will, therefore, look forward to seeing so many of you at Run for Roper on May 31.  She is so very excited for that day and for reuniting with everyone!

David, Ashley, and I will also develop a plan of action to continue to search for the reason WHY she cannot put anything (pills, banana, formula, pedialyte) in her stomach without extreme pain.  The doctors at CMC never investigated that and instead focused on her accepting her pain and managing that pain.  The three of us cannot accept that we still do not know WHY this is happening.  We will continue to search for answers, continue to search for doctors to help us, and continue to remain hopeful that she will be 100% healed.

We will also continue to thank all of you for your continued support, love, and prayers during our time adjusting back home, where Ashley's brothers will now see how she has to cope with the pain and where David and I will have to adjust to juggling Ashley's needs with meeting the boys' needs, especially at the end of the insanely busy school year.  We know it won't be at all easy, but we will be together as a family and will have God and the rest of you right by our side....

destination dallas #10

THIS POST IS OUT OF ORDER BECAUSE IT CONTAINS INFORMATION FROM AFTER THE POST "destination dallas #9" BUT BEFORE THE POST "Nerve Pain Is A Very Tough Thing".

As a postscript to my last post, I want to add a couple of important items.  We had two important events with doctors prior to our departure from Dallas on Saturday, April 12.  The first was with Dr. Brown, the first pediatric GI doctor we saw in the four person group and the one that admitted Ashley to the doctor at Medical City Children's for ten days.  The second was with an ER doctor at the same hospital.

When Ashley and I flew back to Dallas on Sunday night after prom, we had a follow up appointment with Dr. Brown the next day, Monday.  The appointment was a huge disappointment to us both because he was not willing to run any more tests to see why she was unable to eat because all of her tests in the hospital did not show anything of concern and because she is a complex patient due to POTS. Since her continued symptoms didn't match her test results thus far, he concluded she was exaggerating her pain.  Ashley also had an acute pain incident when we were with the doctor, but since her heart rate did not skyrocket during this time, he did not view the incident as very real, even though I reminded him that she is on medication to control her heart rate and her blood pressure.

Nothing, I mean nothing, is worse for a patient with chronic illness to hear such words and such doubt, especially from a medical professional that you expect to help you and to offer hope.  She does not want to live like this!  She wants to be able to eat.  She wants to be able to be at home with her family and with her dogs.  She wants to do things with her friends.  She wants to be able to keep up with her school work.  She does not want to be hooked up to liquid feedings.  She does not want to only be able to drink chick-fil-a lemonade and diluted chicken broth.  She does not want this lifestyle.  Why in the world would she make this her lifestyle?

Even though the doctor knew she could only control her pain with small dosages of the morphine, he refused to give her a prescription for it.  When she asked if he would admit her to the hospital again, he said no.  His opinion was that if one needed morphine for pain that he/she should be in the hospital.  He indicated that he would manage her TPN feedings by writing weekly presciptions for it until we were able to have our appointment with Dr. Brigman in SA on April 23.  He also recommended a pain management clinic in Dallas where several different specialists would be working together on her complex case.  That clinic, however, needed Ashley's medical records to review before the patient would know if he/she were eligible for an appointment.  Appointments were then being made for July!

Needless to say, we left the appointment feeling defeated and lost.  We truly felt that the doctors in Dallas would keep digging in order to find out why her body was not able to tolerate any food other than diluted chicken broth and Chick-fil-A lemonade after taking pain medication beforehand.  We knew there were other tests that could be performed.  We now knew that they were unwilling to do those tests and that they felt her case was too complex due to her POTS and due to the fact that her continued pain did not make sense based on the tests that were run.  Of course, Ashley turned to me for comfort and direction, but I needed a few hours to process what had just occurred and to figure out our next steps.  We scheduled a follow up appointment with Dr. Brown for April 17, Thursday, as he had requested.

I decided to make an appointment with Dr. Patel here in SA in hopes that he would manage Ashley's TPN until we could get in with Dr. Brigman on April 23.  Managing TPN is almost always a GI doctor's job, but given Dr. Patel's brilliance and ability to work locally with Dr. Brigman, I thought he may take on the task if I could explain our last few weeks in Dallas with him during an appointment.  When I first called his office, though, his receptionist said she could not give us an appointment until May 1st!  When I explained the situation to her, she said she would ask him at that moment about managing the TPN feedings  His response to her was that he would need to see Ashley's medical files from Dallas in order to decide that.

I called him again the next day after having Dr. Brown's office fax over those records to him and to the Dallas pain management clinic.  This time I had to beg two receptionists to fit Ashley in on April 14, Monday.  She was finally given an appointment with Dr. Patel on that day at 2:45 pm, which would coordinate well with our flights to SA on April 12 in honor of the twins' birthdays.  Until that time, we would rest Ashley's very tired POTS body, continue monitoring her TPN feedings, and begin to transition home health care while she attempted to work on school work.

By the time April 12 rolled around, Ashley's abdominal pain had increased and she felt like her body was "shutting down", and she did not think she could make it to her appointment with Dr. Patel on April 14.  When our plane landed at around 9:00 am that Saturday morning, she was in so much pain that she asked David to immediately take her to Methodist Children's ER.  At this point in the story, Ashley's dad's post titled, "Nerve Pain Is A Very Tough Thing", continues where this post left off.  So sorry the posts are a little out of order.....

run for roper

Hi everyone!  This is Ashley.  I just wanted to say "thank you" to all of you who are praying for me and helping our family.  You all have been an amazing blessing and I am so thankful for you.

A couple of months ago some friends of mine came up with this neat idea to do a 5K Fun Run in my honor.  (I have some GREAT friends!!)  So I want to support their efforts and help spread the word.  If you're interested, here's the scoop & the link:        

Join us 9AM, Saturday, May 31st at Walker Ranch Park for our first Run For Roper 5k Run/Walk! There will be music, food, fun activities, and you can bring all of your friends and family too!

            Run For Roper is taking place to raise funds for a very loved member of the community, Ashley Roper. Ashley is a student at Churchill High School and is one in a family of six. Ashley Roper suffers from Postural Orthostatic Tachycardia Syndrome (POTS). POTS can be very debilitating and some of the symptoms include fainting, extreme fatigue, nausea, and muscle weakness. It mainly affects the hearts ability to pump blood throught your body, specifically when standing up. Because of this it can cause almost any daily task to become very dificult. Ashley is no longer able to attend school anymore, and spends a lot of time in hospitals. The hospital bills can add up fairly quickly, and all earnings of the event will go straight to the Roper family. They will then decide how it gets distributed to both Ashleys hospital bills, as well as POTS research or local charities. 

We're asking you to help us support the family of Ashley Roper and come out to run, walk, jog,  skip, or even hop this 5k with us! Your support and participation can make a HUGE impact on a very deserving family! 

Event schedule and times

Parking will be limited, so additional parking will be at Embassy Movie Theaters and we will have shuttles for transportation provided by Mercedes Benz of Boerne. The race is scheduled to start at 9am but we ask you to come an hour prior for check-in and packet pick up (shirts, bibs, and additional merchandise)! 

There will be late registration at the event for $40.00 so bring a friend!

Wear proper clothes and shoes for walking/running and bring some extra money to purchase raffle tickets, merchandise, and for our donation buckets!

Any extra donations will be accepted both at the event and online at http://runforroper.myevent.com/ All donations are accepted and are supporting a great cause.

Nerve Pain is a Very Tough Thing

This is David, Ashley's dad. I want to give everyone an update on Ashley.  I'll try to be brief but it covers over 8 weeks of significant events so ... it'll take some time.

Ashley's been having stomach (GI) issues for 7 months.  One night before bed she had severe stomach pain for over an hour requiring us to take her to the hospital. They ran a few tests and couldn't find anything so they gave her some painkillers and sent us home, telling us to call a Pediatric GI which we did.  Unfortunately, there are only TWO (yes two) pediatric GI's in all of San Antonio ... and the next available appt was 6 MONTHS away (and our Adult GI doc would not see her since she was underage).  So we waited. 

And 3 ER visits for the same severe pain and many stomach issues later, my intelligent wife scheduled an appt w a Pediatric GI doc in Dallas while she and Ashley were scheduled to be at a 2-week outpatient POTS Treatment Center in Dallas over Spring Break. Two days after the appt Ashley once again had severe stomach pains. The doc admitted them to Medical City Hospital in Dallas in order to run tests more quickly.  They took Ash off of all food for 5 days to give her stomach a "break" and see if that helped.  Then they started her on TPN (basically liquid food that goes directly into her bloodstream via her IV port which she had surgically installed in January (with a VERY lengthy and painful recovery, I might add). After running several tests over 10 days, the doctors had not uncovered what was causing her severe stomach pain and recommended she simply go to a pain management program at Children's Medical Center Hospital in Dallas.  Angie, Ash and I felt that they hadn't fully searched for the "cause" of her pain and didn't want to simply cover up the pain with pain meds so, after they waited around in Dallas for 10 more days trying to get a doctor in SA to take over management of her TPN (we still hadn't seen a GI doc in SA), we brought her back home to SA in the hopes of finding the cause.

Ash was going downhill by the time she arrived at the SA airport and I took her straight to Methodist Hospital.  After 11 hours in their ER we finally were admitted to a room and started the search for the cause of her pain.  At this point, she hadn't eaten food in 27 days.  Methodist Children's was a frustrating experience.

There was a new attending pediatric doctor every 3-4 days with some taking a more (and others less) interested role in figuring out this complex case.  The good news was ... we finally got to see the 2 pediatric GI doctors in SA!  (Unfortunately, we alternated days in which we saw 1 and then the other.)  The communication from doc to doc was often a challenge, with one pediatrician in particular taking a cavalier approach, stopping ALL of Ashley's meds the first morning she was on the case (the meds, mind you, that took her POTS doctor 2 years to figure out what works and to properly titrate), then never determined what she was going to do, so Ashley didn't get her evening meds either!  Finally, after I raised complete hell, she got her meds at 2:30-4:30 am.  (Oh, and the doctor admitted around 10:30 pm that she hadn't really read her file fully yet.)  This same doc changed the Pediatric GI docs meds multiple times only to have the GI doc change them back.  All of this while Ashley was in extreme pain to the point of having to take morphine just to swallow her dozen pills twice a day b/c water and the pills made her stomach go into severe stabbing pain.  Angie spent every day at the hospital staying on top of the doctors and I spent every night there. It was a daily experience of following up on tests, making sure nurses weren't messing anything up (BASIC things like wearing gloves when they touched her IV port ... the slightest infection from germs on her port would have gone straight to her heart and caused the port to have to be removed and replaced ... it took 6 weeks for her to heal from it last time with extreme pain!  That's when she started taking morphine in the first place.)  It was so exhausting fighting with doctors and nurses on a daily basis.  While we liked our main GI doc, we had NO confidence in the hospital as a treatment "team".

Regardless, the SA docs ran virtually every conceivable test ... and still couldn't ascertain the cause of her pain.  In a nutshell, though, they determined that all of her "plumbing" (GI tract) seemed to be working relatively well.  Hence, the cause for her extreme pain must be that her autonomic nervous system (nerves in her belly) are hyper-sensitive and wildly overworking.  For example, a stomach pain that might be "5" or "6" to you and me is sending signals to her brain that it is a "9" or a "10".

We requested a hospital-to-hospital transfer twice from Methodist Hospital to Houston's nationally renowned TX Children's Hospital ... and were turned down both times reportedly because they felt she needed "pain management" which they apparently don't have.  They recommended Children's Medical Center (CMC) in Dallas.  After much deliberation, Ashley and I headed to Dallas' CMC while Angie spent some much needed time at home with our 3 boys.  (She had been gone with Angie in Dallas for 6 weeks followed by 2 1/2 more weeks of intense hospitalization time in SA.) 

CMC so far has been pretty amazing.  The first day here we were visiting by a never-ending parade of experts ... pain management, GI, psychologist, psychiatrist, nursing supervisor, physical therapist, music therapist, child life/art therapist, school director, quality assurance director, insurance/discharge ... not to mention the attending pediatrician, the resident pediatrician, and the senior resident. 

They clearly had a plan from the get-go as all of the medical experts had a relatively similar game plan in mind: no more tests trying to figure out what was causing the pain; instead they were going to treat the pain and get her back to living as soon as possible.  Their professionalism, confidence, and teamwork earned my and Ashley's "buy in". 

Step 1: No more morphine (the only drug that had brought some relief to Ashley's serious pain for 7 weeks multiple times a day.)  Morphine is bad for the stomach though and seriously addictive so none of us especially Ashley wanted to remain on it for any longer. 

Step 2: Stop having a "passive" approach (waiting for the doctors to deliver the next med, the next treatment idea, hoping to get better) and start having an "active" approach to life (deal with the pain and get back to life).

Following an extraordinarily painful first night (intense pain for over 5 hours, some meds but minimal, extreme anxiety in Ash and me as I tried to help her get through this), we learned what that "active" approach meant.  When the pain doc arrived early the next morning, I asked him what he was going to do medically for her pain and he said calmly and confidently, "Pain management is not about pain meds. It's about taking charge of your life. No pill we give you will take away all of her pain. It can help and it will, although it will take 1-3 weeks to build up in her system.  In the meantime, it's more important that she focus on what is in her power. Pain management is about Ashley learning how to tell her brain to tell her pain receptors "we're not paying attention to your pain signals any more" through distracters, mental imagery, guided imagery, deep breathing, etc. and eventually the pain signals will go away." 

Wow! After 2 1/2 years of Ashley steadily going downhill with POTS (more time in bed, getting out less, in wheelchair more, muscles deteriorating) and 2 1/2 weeks of scheduling meds on a daily basis with the doctors and nurses in the SA hospital so that she would be in the least amount of pain, this was a completely revolutionary way of looking at things.  He and the rest of this team essentially says, "The pain is real and it's intense. So what are you gonna do about it? Take charge of it. Don't let it stop you from living. Deal with it mentally (and as medically as much as possible) and eventually it'll go away (or at least lessen)."

When Ashley gets in intense pain now (it's chronic so she's in pain all day every day but it's also acute pain about 8-12 times a day), I've gone from running to the docs & nurses for pain meds for Ashley to saying, "OK, I know you're in pain. What are you gonna do about it?" and she often responds, "I'm gonna color as a distracter (or use deep breathing to calm her stress, or talk with me about her dog Sadie to distract her from the pain)."  She still gets pain meds but they are not anywhere near as strong as morphine. 

She has started eating again.  They took her off of the liquid food "TPN" in her bloodstream b/c it has a very high risk of infection and is potentially very bad for her liver.  She is being fed via an "NG tube" into her stomach (which was both painful going in and very painful as they started expanding her stomach from a very shrunken state back to it's normal size in a few days ... very painful.)

And, very exciting, two days ago she took her first bite of solid food in 7 weeks ... a slice of banana ... and her stomach was in intense pain for at least an hour.  It was hard to watch. I had to use "deep breathing" myself to calm my own stress while helping her cope with the pain.

Ashley's days are exhausting (physically, mentally, and emotionally). In addition to having to learn and use multiple coping techniques, she is also having to exercise a lot in order to re-condition her body.  On the first day, she was only able to walk to the bathroom with assistance. She is now walking part way down the hallway with assistance.  Due to her POTS, she passes out a lot.  (Today she passed out 20 times while walking 40 feet.  And her right leg and left hip tingled a lot.)

They still don't know exactly why her nerves are causing the extreme pain. They explained that our organs have been studied for hundreds and hundreds of years but our brain and nervous system have just recently been studied and we are in our infancy of understanding how they work. They just know that her nerves are over firing in her stomach.  One doctor called it AmplifiedMusculoskeletal Pain Syndrome (also known as ReflexNeurovascular Dystrophy) which, in essence, is a catch-all diagnosis (which includes fibromyalgia which Ashley has) in which the nerves over-fire for some unknown reason.

There is hope though.  The docs said they hope that they will be able to help Ashley reduce her pain from a 9-10 level down to a 5.  And that she will further train her brain to ignore the pain signals and get it down to a pain-free life.  That is our hope.

The one bright spot in Ashley's days lately has been her puppy, Miss Sadie!  Sadie has made frequent visits to see her via a friend of mine who lives in Dallas.  LeeAnn Young volunteered in my youth ministry at church for several years and is a big time dog lover!  She had facebooked me the day we were leaving for Dallas and said, "If there's anything I can do to help, please let me know.  I looked down and saw Sadie and thought, "This is a CRAZY idea ... but couldn't Sadie come with us if she had a place to stay?!"  So "Nurse Sadie" makes regular visits to Ash in the garden area of the hospital to cheer her up. And when Ash is going through bouts of pain, she looks at the frequent pictures of Sadie that LeeAnn sends throughout the day to help distract her from the pain.

Thank you, one and all, for your prayers!!  Your thoughts, prayers, and support has been incredible.  That has truly been an amazing part of this whole difficult journey ... that we have SO MANY PEOPLE who love and care about us!!

If you want to do something to cheer Ashley up, here are a few ways:

- Send her a text, email, facebook message, or card to our house (Just please don't expect her to write back as she has very limited time and energy to do so)

- Send her flowers (sunflowers & peonies are her favorites)

If you'd like to support her medical care, you certainly can do so via Ashley's medical fund at Chase Bank (210-494-2201) or via a GoFundMe.com account (search "Ashley Roper's Medical Fund" on that website).  Some friends of Ashley's at Churchill High School have also set up a 5K "Run for Roper" fun run on Sat, May 31.  Ash is determined to be healthy enough to be there for it!  If you'd like to learn more, click here.

So many of you have been amazingly supportive of Ashley and our family ... from yard work to helping drive our boys, to bringing meals, to sending us gift certificates while we're running to/from hospitals and doctor appts, to keeping Sadie while we're in Dallas ... INCREDIBLE LOVE.

THANK YOU!!!

May God richly bless you and yours, and may He heal Ashley soon,

David, Angela and family

destination dallas #9

I know it has been over a week since my last post, and I have been meaning to update you for a few days now.  However, something always seems to interfere, whether it be helping Ashley with her spur of the moment medical need, making arrangements for her care with the home health nurse, talking to the separate home health company's pharmacist or pharmacy tech, calling the local doctors about her current issue at hand, calling a doctor in San Antonio about an upcoming appointment, taking her to the local Great Clips to have her hair washed, or holding her hand and reassuring her that David and I will continue to advocate for her health and that we will never, ever give up hope.

The week following prom began with recovering from prom.  We were both physically, mentally, emotionally, and even somewhat spiritually exhausted from that wonderful event that she was able to attend.  She was exhausted from being discharged from the hospital on Friday, waking up at 5:30 am to catch our 8:00 am flight to SA on Saturday, running all over SA with David on Saturday to get ready for prom, having pictures before prom, going to dinner with her prom group, going to the dance for a few hours, coming home to hang out with friends after the dance, working on  challenging homework on Sunday, and then flying back to Dallas on Sunday night, before having a follow up appointment in Dallas on Monday.  Of course, in the midst of all that, she was having to have her TPN feedings unhooked and hooked up again at random times of the days and the nights, coupled with 4 home health nurse visits.

I was exhausted from managing all of the above and also fitting in as much time with the boys while I was home for a mere 36 hours.  After her follow up appointment on Monday, she began to tackle school work, and I began to learn how to become a home health nurse!   What started out as a very nerve wracking and unfamiliar experience has become second nature in just a few days time.  I can flush her port with saline and heparin, add heparin and other additives to her bag of food using needles and syringes, purge the tubing before hooking up the new food bag, and so much more.  I wash my hands singing the ABC song, put on my rubber gloves, and grab my mound of alcohol swabs and get right to work!  Never in a million years would I have seen myself doing all of this, but as with everything in life, you just do what you have to do.  Especially when it comes to your kids.

A nurse will always still come on Mondays to draw Ashley's blood to be analyzed by the lab before her next week of feedings can be prepared by the home health care pharmacist.  A nurse will also be coming on Fridays to de-access her port (take out the 3/4 inch needle) and re-access her port (put in a new 3/4 inch needle) to decrease the risk of infection.  Yes, this is a very painful process, one we both dread.  Ashley has also been having quite a bit of difficulty tolerating the feedings, so we are hoping that aspect will settle down and be more under control before we transition back to SA. 

She can definitely tell when she is not hooked up to the feedings because she feels more weak.  Keep in mind that she still cannot even drink clear liquids without pain and discomfort and taking pain medication before doing so.  The only two clear liquids she can tolerate lately have been Chick-fil-A lemonade and diluted chicken broth.  Since it has now been three weeks since she has eaten any solid food, she is definitely missing that more than ever!  I even asked her if I should eat in private so as to not make it more difficult on her.  Amazingly, she said that was not necessary.

I also took time last week to make plane reservations for us to fly home this Saturday for two nights.  Ashley has an appointment with her local POTS doctor on Monday, April 14, so we can begin the process of transitioning back to SA.  Dr. Patel was not willing to discuss taking over Ashley's TPN feedings from Dr. Brown here in Dallas until all of her records from Dr. Brown were faxed to him.  He would not have been able to see her until May 1 if I had not had Dr. Browns's office expedite those records to him and then begged two nurses to fit Ashley in on April 14.  Our hope is that once he is brought up to speed on the last 5 weeks we have had here in Dallas, he will then contact the local pediatric GI, Dr. Brigman, to see Ashley for her initial appointment sooner than April 23.  We realize that he has asked for her to be seen sooner 3 times in the last 6 months to no avail, but we also realize Ashley's situation is more critical right now.

The other big reason we are flying home is that Josh and Ryan will be turning 12 on Friday.  For those of you that we have been friends with for a long time, can you believe they are that old?  We plan to celebrate as a family this weekend in the midst of their baseball seasons and all the other things going on, and they can have their separate parties once Ashley and I are home for good, and I have had time to regroup.  Josh's birthday list was very short.  He wanted an air soft gun combo pack at Academy and a cell phone.  Too bad he has to wait one more year for the cell phone.  Ryan's list contained 6 items, ranging from a new baseball bat to gum.  Ashley and I can't wait to see them, David and Chris, and the two crazy dogs we own.

I actually had the opportunity to see Chris last night when he flew to Dallas after school to go to the Final Four Championship game with Ashley and me.  (Yes, I did just say that!)  Ashley and I had actually attended the two games on Saturday as well.  Both experiences were incredible and on Ashley's bucket list.  We were able to go to the games thanks to the generosity of Coca-Cola, one of the three big sponsors of the Final Four and also a sponsor of the Ronald McDonald House.  God truly orchestrated the entire process on both days, and I can't wait to share with all of you in my next entry.

For now, though, please pray in the following ways.  Pray for Ashley's strength and comfort.  Living in her condition as a 16 year old is very hard on her in every way imaginable, and it definitely takes its toll after such a long time.  Pray for our transition back to SA to go smoothly, both with Ashley's medical care and with our family adjusting to being together again.  And, please, above all else, continue to pray for answers.  A cause for her digestive problems has not been yet found, and getting to the bottom of that is of utmost priority right now.  She wants to eat again and wants to be off the TPN feedings.  We want to know why her body will not allow her to eat, so she can be treated and on the road to recovery.  Dealing with POTS is definitely harder when your body cannot have proper nutrition as God intended.

Thank you again for all of your ongoing love, support, and prayers.  So many of you have done things for our family that I am not even aware of or that I am slowly becoming aware of as time passes.  Whether you brought a meal, sent Ashley a card at the RMHD, made a donation to Ashley's medical fund, drove our three boys around, and/or simply just showed compassion by asking about how our family is doing, we are forever grateful.  Your actions are truly the body of Christ at work, and seeing that in action helps alleviate the pain and sadness associated with this ongoing, frustrating medical crisis that effects all 6 of us.

destination dallas #8

When I finished writing my previous post, the time was approximately 1:30 am on Wednesday morning.  At 2:00 am that same morning, Ashley called me from the hospital.  She was crying hysterically and in extreme pain.  Being the thoughtful one that she is, even in such dire straits, she said I did not need to come to the hospital.  I told her that I was coming!  I instructed her to call her night nurse, Rachael, and ask for the morphine and ask that Rachael stay in the room with her until I arrived there.  I continued to talk to her as I drove to the hospital and made it by her side within 30 minutes of her calling.  After the incredibly scary experience she had with the unbearable pain on Friday night, she becomes understandably frightened anytime the pain begins to shoot up quickly beyond a level 9.

I have to add that when I walked into the hospital I turned to look at the room of the 9 year old patient that went to be with Jesus when I left the hospital just a few hours earlier.  My heart sank and my tears began as I noticed that the snacks on the counter in the hallway had disappeared, that the emotional family and friends in the hallway had departed, and that the room was empty with the exception of a cleaning service diligently working.

I could not have gone to sleep for the 30 minutes I did before Ashley called and needed me at the hospital if I had not written about that experience in this blog.  I still cannot walk past room 617D without thinking of the heartbreak and agony I so vividly witnessed of the patient's friends and family, especially those of the parent and sibling.  Ashley and I have asked the nurses where we can make a donation in honor of that young angel, and the nurses are gathering that information for us.  I will keep you posted in case you want to make a donation as well.

I slept by Ashley's bedside from 3:30 to 7:30 am until Dr. Russo arrived.  As if the difficult night Ashley had and the trauma of the cancer patient's death were not enough, our visit with the doctor continued the day's downward spiral.  In a nutshell, he inferred that since Ashley's symptoms did not yet have a cause based on the tests that had been run, that what she was experiencing must instead be the result of the continued stress POTS places on her body.  I could see the devastated look on her face as he explained his thinking process. I knew for a fact that the pain she was feeling was not due to stress from POTS.

I had been with her in this state of pain for the past week, and I knew something was clearly and seriously wrong. She knew this, too, but that did not change the fact that his words were very upsetting to her and to me (and to her dad when he was later informed).  We felt as if he was not going to look further for a cause of her pain, but instead was giving up on finding an answer.  To us, though, her difficult case that was not yielding any clear answers, meant that he and the three of us should keep persevering until a clear answer was found.

The rest of the day was full of lots of emotions and plenty of tears.  Ashley was mad that an answer had not been found for the pain yet.  She mentioned that she was more scared of NOT having a diagnosis than she was of having one.  She would cry because she felt like the doctor believed in her initially, but now since her symptoms did not match any test results thus far, he seemed to discount what she was feeling.  I knew as the day progressed that I would need to sleep at the hospital that night and was grateful for Uncle Jeff coming to sit with Ashley while I went back to the RMHD to shower, etc.  The two of them enjoyed sharing Roper stories, and there are PLENTY of them since the family is gigantic!

As I was laying in bed with Ashley that night as she cried herself to sleep, it became clear to me that somehow, someway, with the grace of God, I had to see that she was home long enough for prom on Saturday night.  I began devising an elaborate plan in my head of how to make that happen, knowing that if I had the plan in place and that if I had informed David of the plan, that she would feel at peace with what I had schemed.

Once again, I called on Uncle Jeff for assistance in obtaining flights using mileage points from Dallas to San Antonio.  I located a salon across the street from the hospital that would take care of shaping Ashley's eyebrows to her liking.  Amazingly, it was so close that I would be able to wheel her there in her wheelchair! I confirmed with folks in San Antonio about certain prom details that still needed to be worked out.  In my head, I outlined exactly what needed to be done each day in order for Ashley to attend the most important event of her high school years thus far, the Churchill prom.

The next day immediately began on a good start after a better night's sleep and after meeting with the new doctor in the practice, Dr. Whitney.  Each doctor in the group takes a turn of having hospital duty for one week at a time, staring on Thursday of each week.  Dr. Whitney was very knowledgeable when answering the growing list of questions I had.  The most important thing she said that day, though, was that Ashley should stop trying to drink clear liquids in addition to the TPN feedings.  She made the point that Ashley's stomach was obviously very irritated right now and that giving it a rest from what was causing the irritation was needed.

By receiving the TPN feedings, Ashley is getting 100 % of the nutrition that was needed.  The feedings are adjusted each day based on how well she tolerates them and based on her morning blood work.  Orders for her next TPN feeding are submitted by 11:00 am following the 6:00 am lab results.  Vitamins, electrolytes, blood sugar, etc. are taken into account, and the new feeding is delivered at 6:00 pm, once the hospital pharmacist has developed the liquid contents.

Ashley felt better throughout the day since she was not trying to push the clear liquids.  Her previous feeding had ended at 5:00 pm, so we enjoyed the freedom of not having the large and heavy IV pole in tow when we went across the street to the salon.  However, after her eyebrows' session ended, her stomach began to grumble due to hunger.  We both felt it was wise to try drinking some lemonade and gluten-free chicken broth for dinner.  There had been about 3 nights previously that Ashley could not sleep because her stomach grumbled so much because she was hungry, but unable to eat.  Keep in mind, though, that she was still unable to drink clear liquids or to take her oral medications unless she first took pain medication.

I slept at the Ronald McDonald House that night and took a lot of things home from the hospital that had accumulated over 9 days time.  Dr. Whitney was willing to release Ashley on Friday sometime in order to fly to SA on Saturday morning to attend prom that night.  However, there was a great deal to be done by then in order for her discharge to successfully happen.  Easing Ashley's fears of leaving the hospital without doctors and nurses to manage her pain with medication was at the top of the list.  With the pain on Friday night having been at an unimaginable level and with the pain having been close to that scary level a few other times, this task would not be an easy one!  I was at peace with the plan I had devised, however, and kept telling her that, which seemed to help. 

The other big issue was getting all of the home health care details worked out on such short notice. Again, this was not an easy task since we would be needing those services in Dallas on Friday night, then needing those services in San Antonio on Saturday and Sunday, and finally needing them in Dallas on Sunday night before going back to the doctor for a follow-up appointment on Monday at 2:00 pm.  The social worker at the hospital was able to get the ball rolling on this on Thursday, which allowed me to meet with the home health care personnel on Friday before Ashley was discharged.

One should realize that Ashley has reached a higher level of medical care with the addition of home health care for her TPN feedings.  She must be unhooked from her feedings at 5:00 pm each day and then hooked up to her new feedings at 9:00 pm each day.  The home health care nurses are much faster at doing this than David and I will be for a long time! Careful attention to detail must also be taken during both of these processes since the line from her port is directly linked to her heart.  Any infection to the line or the port itself could be very serious, so the unhooking and new hooking processes include meticulous hygiene and a solid focus from all those involved.

I arrived at the hospital Friday morning at the usual 6:00 am time, after my typical 4 hours of sleep prior.  Dr. Whitney stopped by about 8:00 am and indicated she would proceed with the discharge instructions.  My main question for her was if she would request that the 24 hour urine test results be expedited.  The specimen was shipped to another state on Tuesday, and from one of the young nurses, we learned that those results would not be back for 6 to 8 days.

With our follow-up appointment with Dr. Brown (the doctor in the group that had seen Ashley twice prior to admitting her to the hospital) being on Monday at 2:00 pm, I knew information from that test would be critical for him to know how to proceed.  Dr. Whitney said that those tests can often take up to 6 weeks, so she did not see anyway that the results would be available sooner than the 6 to 8 days time frame.  

I spent the day gathering 10 days of medical records from the hospital in order to have them readily available when we were back in San Antonio under Dr. Patel's care once again.  I also met with the hospital's social worker and had two meetings with home health care professionals.  Once Ashley was unhooked from her feeding at 5:00 pm, nurse Jenn helped me load up the car with Ashley riding shotgun!

Ashley was very scared to leave the hospital without knowing what was wrong with her stomach and was extremely worried about being so far way from the place that provided the relief from her intense pain.  I quickly diverted her attention away from these feelings, though, when I drove her across the street to yet another salon for a manicure and pedicure for prom.  The timing could not have been more perfect as her tears turned into smiles when she began to realize she was officially getting ready to go to prom!

The rest of the night was spent unloading the car, sorting through it all, and then packing our bags for our 8:00 am flight to SA on Saturday morning.  The home health care nurse also came by to hook up Ashley to her TPN feeding.  Prior to her arrival, two large boxes were delivered to our room.  One was a heavy box of her liquid feedings for 4 days that arrived in a styrofoam cooler with dry ice. The other was a box full of medical supplies - alcohol swabs, rubber gloves, tubing, needles, syringes, a pump, a backpack, and even batteries.  We now had  everything that was needed for the next 4 days for Ashley to be fed.

After 5 brief hours of sleep, we woke up at 5:00 am to catch out flight out of DFW.  We knew the drive there was about 40 minutes, and we knew it would take awhile for me to push Ashley through the enormous airport with one hand while pulling a suitcase and cooler and carrying two purses and a tote bag.   Fortunately, Uncle Jeff's suggestion to utilize the valet parking for a slight fee made this process easier.

Getting through security, however, proved to be more of a hassle.  All of our bags had to be hand checked due to the medical supplies and the liquid feedings.  Ashley had to have a pat down since she can not quietly walk through the screening sensors without them making a lot of noise!  We even had to provide medical documentation from the doctor stating that the liquid nutrition was needed to sustain Ashley's life.  Crazy!  All in all, we spent 45 minutes getting through security.

After being wheeled to her airplane seat in the airplane transfer wheelchair, the American Airlines plane departed on time.  Ashley and I became so excited!  We could not wait to be home after all this time, and she could not wait to go to prom!  She was still in a lot of pain despite the medications, but her happiness was overriding the pain at the moment!  This happiness continued throughout the weekend, and she said she felt like attending prom was a dream come true. At times, she had to pinch herself because she could not believe that being there was really happening!

David and Chris met us at the airport with Sadie in a shopping bag!  They placed her on Ashley's lap, and she immediately remembered Ashley and started giving her kisses.  Chris had grown so much that I thought he was David when they were both turned around. and Ashley and I initially saw them from a distance.  From there, David loaded Ashley, Sadie, and our luggage in his mid life crisis car, so they could begin their day of prom preparations.  Chris and I headed to the rental car site via shuttle, and he thoroughly enjoyed being the one to pick out the specific car!  

David first drove Ashley home to drop off Sadie and our luggage.  They then went to have Ashley's hair fixed.  The best part of this time for Ashley was getting her hair washed.  This is something that is quite a challenge these days with her port being accessed and hooked up 20 hours of each day.  The port can under no circumstances get wet, which means that I must help bathe Ashley and tha she has to have her very long hair washed at a beauty parlor.

Next, Ashley took a 20 minute nap at home while sitting upright on the couch with her knees in a ball to fight off abdominal pain.  They then went to the mall for Ashley to have her-up make done.  Once they were home after that, Ashley began getting dressed for prom.  Not an easy task since she was hooked up to the TPN feeding still!  David drove Ashley to Casey's house and then to Kelsey's house for pictures before picking up Ashley's date Austin at his house.  The home health care nurse met them at Austin's house, so her TPN feeding could be unhooked.

From there, the three them drove to Landa Library for group pictures with the other 28 people on the prom shuttle bus.  All of the kids looked so beautiful or handsome, and Ashley was beaming for being able to be a part of it all.  She had previously hired her brother Chris to be her photographer.  Following an hour of pictures, the chartered bus departed for Brio restaurant at La Cantera.  David followed the shuttle from pictures to the dance, where the home health care nurse named Tony met up with Ashley, David, and Austin.  Tony hooked Ashley back up to her TPN feeding in the mid-life crisis car while David and Austin waited nearby and chatted.  This process took about 45 minutes and meant that Ashley would have her backpack with the feeding inside with her as she went into the dance.  Since her port is under her left breast, she decided to have the tubing come up towards her neck and then exiting under her armpit.  Amazingly, you can only see a minimal amount of the tubing in some of the prom photos.

When the prom was over, the shuttle bus took the 15 couples back to one of the girl's homes.  Most of the kids would hang out there for a prom after party, but Ashley chose instead to come home with Austin to watch some March Madness!  Her friend Taylor, who was in town from Cal Poly, and her friend Colton, who attends Texas State with Austin, came over to join them.  David ended up going to bed before the guys headed home, so Taylor carried Ashley upstairs to bed at about 2:00 am before they all departed. 

And,, the night came to an end.  A night where Ashley was able to be a typical teenager and enjoy prom with her peers.  A night where she was able to look and feel like a princess.  A night where she was catered to by her date Austin and her dad, too.  A night where, all too briefly, she was able to forget that she still cannot eat table food.  A night where she still had to use her wheelchair and still had to have help walking short distances and standing up at times. A night where she was a beautiful princess.  A night where she was  so happy and so stunning.  A night she will always remember.

On Sunday, David had to work until about 2:00 pm, and I had some more time with the boys.  We went to Super Target and picked up some much needed groceries and other items they needed such as lead for their pencils at school.  We enjoyed a nice lunch out on the patio at Mooyah and discussed Josh and Ryan's upcoming 12th birthday on April 11.   We stopped at Academy on the way home so that the twins could show me some birthday gift ideas.  I then dropped Chris and Josh at home to unload and put away the groceries while I took Ryan to baseball practice.  David arrived home at some point and awakened Ashley to do homework before she and I departed for the airport.

We left San Antonio on a 7:00 pm flight and looked at prom pictures during the entire 1 hour flight!  Our car was waiting for us at the valet station outside terminal D, and I was so thankful for that service since we had departed from terminal A!  Riding the DFW skylink while pushing a wheelchair with 2 extra bags on the bag of it, pulling a suitcase with a cooler on top of it, and carrying my heavy purse would have been more than cumbersome when I was already running on fumes!

We thought a home health care nurse would be meeting us at the RMHD at 9:30 pm to hook up Ashley's new feeding, but the nurse instead talked us through the intricate process over the phone.  This took about an hour, and we then upacked and collapsed in bed more tired than ever!  Before going to sleep, Ashley looked at more prom pictures and again thanked me for somehow getting her to prom.  I was quick to remind her that God and so many others helped make it happen, too.  The fact that she attended was truly by the grace of God and truly a miracle.  Thank you to all of you, especially Debby Villers, for making that magical night happen for our precious princess.

We both needed a lot of rest before seeing Dr. Brown Monday afternoon.  I could feel my body ache from exhaustion throughout the day, and Ashley needed a lot of sleep to recover from the marathon prom day and the travel as well.  We met with Dr. Brown and learned the 24 hour urine test results were still not available.  Bummer!  We need those results to know how to proceed.  Although it is unlikely she has porphyria because it is so incredibly rare and because she is not of Dutch or African-American lineage, we need to rule it out before testing for other things.  The results are expected before the end of the week and even if they are positive, Dr. Brown and his group would not be able to treat it, as she would need a different type of specialist. 

The chances of her having been exposed to metal are also incredibly rare because of where we have always lived, but should that turn out to be positive, she would also need to be treated by a different specialist.  Should both of those tests be negative, Dr. Brown recommended that she attend a pain management clinic with a multidisciplinary approach.  There is one here in Dallas at Children's Medical Center, which we would like to get her in to if we can for an initial evaluation.  In the meantime, Dr. Brown is going to manage Ashley's TPN feedings since she has to be fed and still cannot tolerate clear liquids.  He wrote the orders for the next week of feedings and those should arrive at the RMHD on Tuesday.  She will continue to be on a 20 hour feed but will be given more calories to hopefully replenish the 3 pounds she lost over the last two weeks.

Our next steps are not yet clear, and David, Ashley, and I have a lot of reflection and discussion to do.  We have a follow up with Dr. Brown in 2 weeks to see how she is tolerating the increased calories he added to the TPN feedings.  We do have an appointment on April 23 with the pediatric GI doctor in San Antonio we have waited 6 months to see, despite multiple efforts by her POTS doctor to fit Ashley in sooner.  This doctor could very well be our second opinion doctor.  And, most importantly, we still do not have a diagnosis of what is causing the severe abdominal pain that can only be slightly alleviated with pain medication prior to drinking clear liquids and taking medication.

So, this is where we need your prayers.  Pray for the three of us to have clear direction.  Pray for answers to be found somehow, MUCH sooner rather than later.  Pray for the TPN feedings to be as temporary as possible since the long term side effects could be damaging to her liver.  Pray for our family of 6 to be sustained despite still being in 2 cities at the moment.  Pray for David and me to have much needed rest as we are continually making critical medical decisions, with Ashley's input of course, about her care.

As I wrap up this novel of a post, I again want to thank each and every one of you for your prayers, love, and support.  There are so many people doing things for David and the boys, so many things of which I know I am not even aware.  There is my wonderful boss, Janet Scott, at UTSA that is stepping in for me while I am away.  There are people driving the boys to practices and games when David cannot do so.  There are people making donations to the Fundable account established for Ashley's medical costs.  There are people texting, calling, e-mailing, messaging, sending Ashley mail and packages, and reading this blog because they care so much about Ashley and our family.  There is just no way for me to sufficiently express how much this means to all of us, so I hope you all will always know we are truly grateful, from the bottom of our hearts.

At the same time, I realize that it may be rather frustrating to you if we cannot return your phone call, if we cannot write a proper thank you note for a gift, if we cannot respond to your text, or if you feel out of the loop about this complex medical situation.  However, we are doing the best that we can with all that we have to juggle.  We must prioritize each and everyday what is most important, and some days that is simply taking care of Ashley and taking care of the three boys.

Ashley, in particular, needs a lot of rest and cannot text, tweet, etc. very often.  Keep in mind, too, she is still trying to stay on top of her school work in the midst of this storm.  So, while we truly NEED your prayers, love, and support to weather this most difficult storm and while we definitely appreciate these more than we can ever fully convey to you all, we also pray that you will understand the critical need for Ashley's medical care and for our family's well being to be of utmost priority. . 

Until next time....

destination dallas #7

Today was a fairly uneventful day in room 606D at Medical City Children's Hospital.  In fact, Ashley and I both commented that the day seemed to go by slowly for some reason.  Maybe it is because we have settled in to our hospital routine, our hospital home.  We know several of the nurses very well now and have our favorites - Rachael, Marcella, and Ashley!  I know how to go down any elevator and know where I am and how to easily make it back to the room.  I think, though, that the day went slowly mostly because we are still just waiting, waiting for answers, answers that may not still be available for a few more days.

Ashley finished her first TPN feeding and noticed a different type of stomach pain with it.  This does not make sense to the doctor or the dietician, though, because with TPN feedings, the nutrition bypasses your stomach and filters through your bloodstream via a central line.  She is currently on a 24 hour feed, so she received her next round this evening.  She was happy to see that the large bag is clear and not yellow.  While walking outside today, she felt like people probably thought the bag contents were something else!  Her second feed has less vitamins but more fat, so it will be interesting to see how her body tolerates it.

Dr. Russo's main concern with the TPN feedings is what they could do to her liver.  Therefore, her blood is drawn before 6 am each morning with results available before the next feed order is placed before 11 am.  He indicated that TPN feedings are a temporary solution for that reason.  That is why it is so important to have her continue to digest clear liquids, which is still difficult without a round of morphine beforehand.  She ate 1/2 of a popsicle, drank about 16 oz. of lemonade, ate some diluted chicken broth, and drank water throughout the day.  Amazingly, she has only lost 3 pounds despite not having any solid food for a week now.

Other goals for Ashley according to the doctor are that she begin to sit in a chair and eventually attempt walking.  She sits up when we go on wheelchair walks obviously and sat up more in bed today.  She still requires the help of her wheelchair when going to the bathroom due to being light-headed from POTS and due to having increased abdominal pain when she moves around.

The highlight of our day was a face time session with the 4 Roper boys and 2 Roper dogs.  Josh was in rare form and had Ashley and I laughing a lot.  Chris was wishing he could enjoy dessert with the others, but he gave up sweets for Lent.  Ryan was on the quiet side but had plenty to say about the breakfast menu today.  Apparently, David decided to use his new juicer to make random fruit and vegetable smoothie type things for the boys today.  For boys who eat a large breakfast every morning, this did not cut it.  Josh said he was so hungry in 3rd period he could not concentrate to do his work!  Grace and Sadie were up to their usual tricks of looking for droppings from dinner under the table and around the kitchen area.

Ashley and I have talked a great deal about how this experience makes you appreciate the small things in life, things we all often take for granted. Fresh air.  Sunshine.  Taking a bath.  Having clean hair.  Being outside.  Solid sleep.  Eating.  Drinking.  Family. Friends.  And so much more.  I think we both thought of how important it is to slow down even more by taking the time to stop and smell the flowers because of what was going on today on the 6th floor.

Our wing houses a lot of pediatric cancer patients.  There are some patients that have been there for a very long time as evidenced by how much their larger rooms are decorated.  There are some patients who come for a couple of days for chemo and then go back home.  All of the cancer patients have multiple signs on their doors about checking in with the nurses' station before entering the room.  The patients have ranged in age from toddlers that are be pulled around in red wagons to teenagers that wander around on their own.  All of them have their IV poles with several chemo drugs attached in tow.  Many of them are without hair.  The youngest ones are usually sad or irritable.  The parents and grandparents looking after them often look exhausted.

Today, however, there were parents and many other children, teenagers, and adults openly weeping and hugging each other in the hallway around the corner from Ashley's room.  I noticed them right away when I exited the elevator in the afternoon, and I immediately knew why they were so upset.  My heart instantly ached, and I felt my stomach twist into a tight knot.  I immediately began to cry as I was out of their sight.

I saw how much emotion was on their faces and in their teary eyes.  I noticed how they were not trying to hide their emotions.  I wondered how in the world does a parent survive such a tragic event in life of watching a young, innocent child slip away to our Father's loving arms because of cancer.  I wondered if the food that others had brought to be shared among those grieving would still be there tomorrow.  Would this suffering child continue to suffer?

As I close this entry tonight, I ask that you pray for this family of a 9 year old boy.  I ask that you pray they will feel God's peace and comfort during this time.  I ask that you pray for a cure for childhood cancer and all the other terminal illnesses that have no cure.  I ask that your prayers lead you to do something for someone that is hurting so deeply that he/she does not know how he/she can face the next day.  And, while I ask that you still pray for Ashley to be able to eat without feeling stomach pain and that you pray the doctors will aid us in finding answers sooner rather than later,  I can't help but think this family needs your prayers even more. 

This poor family has lost their son and will not be able to enjoy the small things with him here on Earth any longer.  For those of you reading this, remember that you are fortunate enough to still enjoy the small things in life with those you love.  The family of the 9 year old boy, however, must now wait to enjoy those moments in Heaven.  And, to them I have no doubt that feels like an eternity....