Holly and I talked for 45 minutes on our first call and I don’t think I even knew her name until the last few minutes. Yet, she immediately felt like family to me.  It happens every time.  The connection that I feel to other mom’s and families that have been through or are going through a traumatic illness is difficult to explain. That first conversation always brings an overwhelming sense of dread, relief and fear.  Dread that there is another family living the nightmare, relief that there is a chance for me to use our story to support and encourage them, and fear that the recovery they are praying for may not be the one they receive.

Over the next 5 months Holly and I continued to talk over the phone.  There were so many times that I wished we lived close enough to talk in person. I felt so far away – and wanted to do something more to help. But since we are on opposite sides of the country, it seemed crazy to even consider it a possibility.

That is until Holly and Marisa decided to travel to Johns Hopkins in Baltimore, MD to meet with several specialists that they hoped would aid in Marisa’s continued recovery.  My first thought was – This is one AMAZING Mom! To help put this in perspective, you should know that Holly is a wife and mother of 2 children. Not only did she travel 3000 miles with Marisa, who is still recovering from ADEM, to strange city to meet an entirely new set of doctors; but she had to leave a wonderful husband and 4 year old son behind for almost 7 weeks to do it.  Holly is one of the strongest and most courageous women I know.

I couldn’t wait to meet her in person and knew that Baltimore might be the best opportunity we would have. Johns Hopkins is a little over 9 hours from our hometown which means we could make the trip in a week-end so we decided to hit the road on Friday, September 30.  (Unfortunately Neely had a bad cold, and we felt like the 20+ hours in the car would just be too much for her so just Jamie and I that made the trip.) We stopped in Virginia on Friday evening to have dinner with friends and a good night’s sleep. Many thanks to Dustin and Mary for the hospitality.

(Incidentally, we also stopped in Virginia on the way home to have a delightful discussion with one of Virginia’s finest and get a souvenir speeding ticket. Many Thanks to the officer who pulled us over.)

We arrived in Baltimore before noon on Saturday. The last 30 minutes seemed to take hours and I literally thought my heart was going to beat right out of my chest.  I was so excited and anxious to meet Holly and Marisa. When we arrived at Ronald McDonald House (more on this later – it is an amazing place!) Holly and Marisa came down to greet us and we gave each other the biggest hug! I’m sure little Marisa was thinking, “Who is this crazy lady crying with my Mom?” but she followed her Mom’s lead and took us right into the toy room where we could get to know each other better.

We never missed a step and eased right into a conversation that took us well into the afternoon before we thought to stop for lunch.  Jamie got in some great playtime and color time with Marisa while Holly and I talked and talked and talked.   There was no question that Marisa had stolen the heart of everyone at Ronald McDonald House. People would float through the room from time to time and always stop to say hello and see her beautiful smile. She is such a sweet, happy little girl! I can only imagine how she will feel as an adult when she looks back on this time and remembers how much she was loved and hard her Mom fought to get her the care that she needed. (My prayer is that when that time comes, ADEM is nothing more than a distant memory from her childhood and that there are no visible reminders.)

Marisa is doing great.  If recovery has anything to do with attitude and spirit (and we know it does) than there should be no doubt that Marisa will eventually overcome all her current hardships. Her sweet smile can truly brighten the room and the light of optimism and enthusiasm in her eyes is something from which we could all benefit. I just couldn’t stop hugging her!

We all went to lunch, visited the National Aquarium, walked along the Harborplace River Walk, and even squeezed in a late dinner.  Marisa was such a trooper. She played and laughed and even managed a short nap while we walked and talked all over Baltimore. It was a wonderful day and the time seemed to go by so quickly.

After dinner there was still one thing left to do.  I’d hoped to have an opportunity to see the statue of “The Divine Healer” that towers over the administrative lobby of one of the Johns Hopkins buildings.  And I am so glad that we were able to go there together. It still gives me chills to think about that beautiful room and all of the healing prayers that have been spoken there. I took a few pictures but must apologize that they do not even come close to showing the true awe that comes with seeing it in person.

Donated to the Johns Hopkins Hospital by Baltimore merchant and philanthropist William Wallace Spence, “The Divine Healer” is a truly majestic statue of Christ that has offered hope and a place of quiet reflection for patients and families since 1896.  People come there to pray for healing, among other things and to find inspiration. But what they leave behind will literally bring you to tears.

Carefully placed at the feet of Christ are flowers, letters, tokens of affection, cards and pictures (mostly of children). You can’t help but feel the prayers that must have accompanied each piece and the pain and hope of each person that left them there.  Over 100 years of hopes and prayers fill that room.

It is an overwhelming experience and something that I will never forget.

After a day of laughing, crying, walking in the rain, and talking until our voices were horse we couldn’t think of anything better to do than take pictures. I say that in an effort to apologize for our appearance J I hope you enjoy the pictures.

It was an amazing trip that I would repeat hundreds of times if the opportunity continues to present itself.

I’m so grateful to Holly and Marisa for spending the day with us but I am even more grateful for their friendship and their ability to inspire others.

Ignoring geographic boundaries, fighting against all odds, and refusing to take “No” for an answer; Holly and Marisa are miracle makers and the world needs more people like them.

Hanging out with Roy Spence

Ok, I am a wife, a mom, an advocate for children, and a marketer. (That’s the start of the list anyway.) And last week my worlds had a little collision.  I was actually traveling to a conference for ScanSource, Inc (where I work as a Director of Marketing) and had the opportunity to meet and talk with Roy Spence. (In my opinion, one of our world’s most amazing marketers)

He was inspiring!  His message was about finding your purpose in life, and then finding a way to fulfill it.  Since Neely’s battle with ADEM, I have felt constantly lead to share her story with others. I truly cannot stop.  There is a constant pull on my subconscious to do more, say more, talk more about her illness and the journey that we traveled to help her recover. Quite honestly, sometimes I think the people around me get tired of hearing me talk about it but that doesn’t silence the voice in my head that tells me to keep going.

Roy’s advice to me was very simple. “Write the book, Christy, and let the rest of the pieces fall where they may.”  It’s not revolutionary advice, but since it came from a revolutionary thinker I’m taking it that way.  My conversation with Roy ignited a new spark. It is yet another turning point (or pushing forward point) on this journey that began with Neely’s Miracle. Below is a video of the presentation that Roy gave at the conference. It is well worth the hour-if you chose to watch the entire clip.

And while we didn’t get the news that we hoping for, we are so grateful that Neely is doing well. She did a great job during her EEG. She did everything the technician asked and didn’t complain at all.  Only once while she was trying to go to sleep (during the sleep portion of the test) did she whisper to Jamie and I and say, “I don’t like this, Mom.”  Her courage and positivity in the face of everything she has been through literally makes my heart crumble to a million pieces.

At one point Neely said, “Mom, when I grow up, I’m going to sign-up here and be just like Dr. Morales.” Wouldn’t it be great if we could all just “sign-up here.”  A child’s perspective is the most amazing gift and I wish that as adults we could still see the world through child-eyes.

Anyway, Neely did such a great job that we were able to breeze through all the parts of the EEG. Unfortunately, her test still showed the potential for seizures.  The good news is that she even though there is potential for seizure, there was an  improvement over the last EEG so we are hopeful that this news is just one more hurdle to cross and not something that she will live with permanently.

So what does that mean? It just means that we keep doing the same things we have been. We stay on the anti-seizure medicine, which is working well to control seizures for Neely, and we keep praying for better results next time.

Last month we had a check-up with Dr. Morales. It marked a 2-year anniversary of us being released from the hospital. Neely, as usual, was so excited to see him.  As soon as the nurse opens the door for us to go back to the exam room, Neely begins scanning the halls to see if she can be the first to see him and I always wonder if he has that effect on his other patients.

I’m fairly confident that she has few (if any) actual memories of the time that she was so sick, yet her fondness for visits with him is something that has been consistent from the beginning.
I’m not sure if/when/how we would ever be released from Dr. Morales’s care. We just haven’t gotten close enough to even think about that step – but I truly cannot imagine the day. I guess it would be weird if I insist on annual visits regardless. (HaHa)

Neely’s progress continues to amaze us. She has remained seizure-free (2 years at the end of September) and is scheduled for an EEG on August 5th to monitor her status.  EEG’s can be a little tricky to prepare for from a parents perspective. Ideally, they would like to be able to monitor her from both a waking and sleeping state. So she goes into the test sleep deprived. Which means Mom is a little sleep deprived too! The night before the test we will keep her up until mid-night. Thanks to Neely’s medicine (which has insomnia as a side effect) keeping her awake isn’t too hard. After a few hours sleep, we wake her back up at 5:00 am and then keep her awake until the test later that morning.

The test lasts a few hours. The most difficult part of the test for Neely is having the EEG cap put on. It’s an elaborate mass of brightly colored wires that are attached to her head with a very sticky gel. (Not ideal for little girls with long hair) Once the cap is on, we just relax, watch movies, play games, and try to get Neely to take a nap. We typically get results from Dr. Morales very quickly.

If her EEG looks good (and we have every confidence that it will) we may be able to begin weening her off of Keppra, the anti-seizure medication.  That will be a giant step for us in trying to close the ADEM chapter of Neely’s life. We can’t wait to share the results with you…Stay tuned.

Hours and hours of therapy are needed to take even small steps. (Literally!)  Marisa and her Mom are spending as much as 6 hours each day in therapy to get her as close as possible to her Baseline.

Baseline. That’s the word you use to refer to the way things use to be. Marisa’s baseline is equal to her “normal” before ADEM.  Just establishing baseline can be no small feat for Mom and Dad.  I remember the therapists (Neely had 5 that each focused on their area of expertise) asking me questions about the tiniest details of how she did things pre-ADEM.

• “Does she hold a crayon most often with a fist or between her thumb and index finger?”
• “How long can she stay focused on a single task without interruption? Minutes? Seconds?”
• “How many and which colors does she know? How many letters?”

All therapists and doctors combined, I must have answered hundreds of questions about Neely’s Baseline. It gave me an entirely new perspective for noticing the little things.  She was only 2 and a half when diagnosed, so she hadn’t been holding a crayon for that long. And I had never timed and recorded her ability to focus on a task.  It was great mental gymnastics for me and her Dad!

In spite of everything that Holly, Marisa’s Mom, is focused on right now, she took time to put pen to paper and share Marisa’s Story with us. Holly is an amazing Mom, who is still fighting to make sure Marisa has everything she needs to heal.  By reading her story, we hope you’ll see the importance of taking an aggressive approach to your health care.  You are your own best health care advocate.

This is Marisa’s Story in her Mother’s own words.

My name is Holly Machado and my family consists of my husband Brad and our children, Marco and Marisa. We live in Fresno, California. Marisa was born on January 2, 2009 and quickly grew into a sweet, loving, affectionate, independent, precocious, fearless and strong child. She warmed up any room because she was always happy and cheerful. And she loved to give kisses and say, “I love you!” to pretty much everyone she knew.

Both of my kids were very healthy and strong. The only exception was Marisa had ear tubes put in when she was 15 months old because of recurrent ear infections. The surgery took about 6 minutes and within weeks Marisa was talking like a 2 year old.

Monday, January 24th, 2011, began like any other day except it would mark the beginning of events that would change every member of my family’s life forever. When we woke up that morning both of my kids had come down with upper respiratory infections. I bought extra Kleenex, turned on the humidifier and kept the kids home for the next few days to recover.

On Saturday night Marisa developed an ear infection so I took her to her ENT specialist on Monday morning, January 31st for antibiotic ear drops and oral antibiotic. Marisa fell asleep in the car on the way home from the ENT office and I put her directly into her crib for her nap. When she woke up from her nap she had a fever of 103.6 and began vomiting. She continued to vomit and have a low-grade fever so on Thursday I contacted her ENT doctor who said to take her to her pediatrician. I called her pediatrician for an appointment.

Unfortunately, he had left early that day and his office was closed on Fridays, so I took her to the urgent care office by my parent’s house. The doctor there thought she didn’t look good so he gave her an x-ray for pneumonia. The x-ray came back negative and I said, “Look at her, she looks miserable.” He said, “She has the flu, I can tell. Don’t you feel miserable when you have the flu?” I agreed but I did think it was strange that Marisa had the flu when she had received a flu shot. Her fever went away the next day but Marisa continued to vomit sporadically.

Marisa’s pediatrician’s office is closed over the weekend so I took her urgent care on Saturday to have her checked for dehydration and to make sure her infection was not worse. The doctor said her hydration was fine and he saw no signs of infection so he said it would be okay if I discontinued the oral antibiotic since she was vomiting her medication up anyway. He said to feed her yogurt to replenish the good bacteria in her stomach because she probably lost the good bacteria because of the flu and the oral antibiotic. He claimed this was the likely reason Marisa was vomiting.

Marisa, January 2011

On Monday, Marisa, January2011 February 7th Marisa woke up looking really good so I took her to the park. She ran around and was smiling but seemed to get tired easily so we went home early and she laid down for a nap. When she awoke her temperature was 100 so I called her pediatrician again for an appointment. He had no more appointments that day so I took her to urgent care again. I was very concerned that she had an infection since she did not finish her antibiotic. The doctor there checked her lungs, hydration, ears and throat for infection and saw no signs of anything wrong. I asked her why Marisa would continue to vomit and she said that Marisa probably had a virus and to make sure to keep her hydrated.

Once the Zofran wore off Marisa’s vomiting returned violently, so on Thursday, February 10th I rushed her to the local children’s hospital ER. I was concerned that she might have something “weird” now and I asked the doctor, “do you think she could have an infection in her brain?” He said “its unlikely” and I felt a little relieved that he didn’t think she had something in her brain. We did spend about 10 hours in the ER that day while they ran numerous tests: a head CT scan, blood tests, x-rays, UTI analysis, etc. All the tests came back negative except a blood test showed she had a high white blood cell count. I asked the doctor if that meant Marisa had leukemia and he half laughed and said, “no, no, it is just one white blood cell and its not even that high.

Its probably due to stress on the body from vomiting.” He concluded that she had a virus and sent us
home with instructions to give Marisa more Zofran for vomiting and make sure she got plenty of fluids.
When I took Marisa home that night she sat up in bed, watched Toy Story and ate saltine crackers with
her brother. I figured she was on her way to recovery and I was so incredibly relieved that they had found
nothing wrong in all of their tests.

The next day Marisa slept all morning and when she woke up, she vomited again, even while taking the anti-nausea medication. I loaded her back into the car and took her back to the ER. It was Friday, February 11th, 2001. While we were waiting in line again at the ER Marisa began to vomit violently and began to grind her teeth. I became hysterical and one of the nurses took us to the front of the line. The ER doctor began running more tests. He eventually did a “lumbar puncture” which showed a white blood cell count in her cerebrospinal fluid of 42. He said she either had meningitis or encephalitis, but he said encephalitis was unlikely because “it is not the season for encephalitis.” I again thought her brain was okay and was a little relieved. The ER doctor immediately started her on IV antibiotics and we were admitted to the hospital.

That night, about 3am, one of the resident doctors spoke with us about Marisa. She said she was happy to report that Marisa had viral meningitis. They would give her fluids and she would be home in 2-3 days. My husband and I were so relieved and texted everyone we knew the good news. The next day, however, we saw another resident doctor and he said they were working on diagnosing Marisa. They were pretty sure she had meningitis but weren’t sure if it was viral or bacterial. I said to him, “The last doctor was sure she had viral meningitis, and now you’re telling me you’re not sure?” I started to get worried that they really didn’t know what was going on with Marisa.

We finally saw a real doctor, a “hospitalist”, on Saturday and she concluded that Marisa had an infection somewhere in her body. She just didn’t know where the infection was in Marisa’s body. She advised that the “broad-spectrum antibiotics” Marisa was being given would wipe out virtually any infection she had. The hospitalist doctor thought that possibly Marisa’s appendix had ruptured and she had an infection in her abdomen. Marisa had had a CT scan of her abdomen in the ER, but it was inconclusive as to appendix rupture. The hospitalist doctor consulted with a pediatric surgeon who advised there was no appendix rupture. Back to square one!

On Monday, Valentine’s day, we got a new hospitalist doctor and he basically ignored Marisa for two days. Marisa was scheduled to have a PICC line inserted on Tuesday, to ease delivery of her antibiotics, so we really didn’t see our new hospitalist until after Marisa’s surgery. When Marisa came out of surgery (we’d been in the hospital for 5 days) she looked really bad. She started to get “lazy eye” right before my eyes! The nurse tried to assure me that it was probably because Marisa was really tired. Over the next few hours Marisa began to show signs of seizure activity. She was very stiff, she was grinding her teeth and her fists were either clenched or her hands were shaking badly. I kept saying to the nurses and the hospitalist, “she’s having seizures, she’s having seizures!” They spent all their energy trying to convince me she was not having seizures instead of trying to figure out if there was anything to be done!

The hospitalist doctor finally gave Marisa a drug called “ativan” to make her sleep. Marisa fell asleep and the hospitalist doctor left to go speak with a “neurologist.” I had heard of a neurologist before, but I didn’t realize that was the kind of doctor Marisa needed to see all along.

Before the hospitalist doctor could return, Marisa woke up and began having a seizure that ultimately lasted for 45 minutes. I ran to get a nurse who ran into the room and pressed a button above Marisa’s bed. I heard over the hospital intercom “rapid response room 815, rapid response room 815.” This is an emergency call throughout the hospital. Several doctors and nurses rushed to her room and began frantically working on her. They made me leave the room. After several minutes, they decided to take her to the Pediatric ICU (PICU.) I was absolutely hysterical and I wasn’t sure if Marisa was going to live.
I couldn’t believe this was happening to my precious little girl. I had previously called my husband and he was just arriving to the hospital when several people were rushing Marisa to the PICU. He tried to get on the elevator with Marisa, but they wouldn’t let him go. He didn’t know what was happening to her.

Once in the PICU Marisa’s doctor put her on a respirator and flooded her body with drugs to stop her seizure. The amount of drugs they gave her put her into a coma. Finally, on Wednesday, February 16th, Marisa was given an MRI and she was diagnosed with acute disseminated encephalomyelitis (ADEM.)
Basically, the upper respiratory infection that she came down with on January 24th triggered an auto-immune reaction in her body that began on January 31st. Her own immune system began attacking the myelin nerve coverings in her brain and spinal cord. Her brain had been deteriorating since January 31st and we finally found out more than two weeks later!!

Marisa’s PICU doctors began treating her for ADEM on February 16th. Her treatment included IV steroids, plasmapharesis, a blood cleaning procedure similar to dialysis, and IVIG, which is human immunity and is supposed to “shut off” her own immune system.

Marisa’s doctors took her off sedation on February 17th and said she would wake up from her coma that night or the next day. However, Marisa stayed in a coma until February 23rd, when she opened her eyes for the first time in 8 days. When she finally opened her eyes, she could not see, speak or move. She could hear perfectly and cried inconsolably whenever I spoke to her. She was “locked-in” as her doctor called it. Over the next week Marisa improved until her doctor felt she could come off the respirator. She was “extubated” on March 1st. She was moved out of the PICU to the rehabilitation unit on March 11th.

Marisa’s recovery has been very slow when compared to most ADEM cases. She began speaking again on April 23rd, the day after we came home from rehabilitation. She took a few steps on her own a couple of days ago, May 10th. She has hemiparesis on her right side (her leg and arm are weak), which indicates that she has permanent brain damage to the left side of her brain. She can move her leg but she cannot move her hand or arm. Her doctors have told us it is unlikely that her right side will ever be perfectly normal again. We hope to prove them all wrong.

This has been the worst experience of my life. I’ve cried and cried over all the regrets I have: I didn’t take her to the doctor enough! I didn’t pick a good pediatrician! Why didn’t I realize she was so sick? Why didn’t I realize she had something in her brain? Why didn’t I find a new pediatrician when I couldn’t get in with her current one? Why didn’t I fight harder for her to get more attention from her doctors? If I could go back in time I would have screamed from the top of my lungs, “My daughter is extremely ill, do every test you can until one comes back positive!”

I’ve learned that the people in medicine are just like people in other professions: some are caring, some are proactive, some are bright, some are lazy, some are careless and some are apathetic. I am the person who loves Marisa the most and I have to make sure that she gets good medical care. And that means being assertive and demanding, otherwise, your child will get lost in the shuffle.

I welcome anyone who has a child or relative with ADEM to contact me on my cellphone at 559-273-8997. Luckily, I found Christy Thompson on the internet at www.neelysmiracle.com and she helped me through this devastating time. She was so caring, supportive, positive and helpful. I would have not coped as well were it not for Christy and her texts and calls giving me encouragement and hope. I thank you Christy for everything and can’t wait for the day we can meet in person!

I can’t thank Mary enough for allowing me to share her story through NeelysMiracle and wish Joey continued health and happiness.

This is Joey’s Story, told in Mary’s own words…

Joey experienced ADEM when he was three years old.  But first, let me give you a brief history.

When I was pregnant with Joey, we were told he could have Downs Syndrome because of the ultrasound results and that I was 39 years old.  The amino was negative.

Then at Joey’s 4 mo. checkup I was concerned about his being floppy.  The doc checked and agreed.  He called us back later that day and recommended a muscular dystrophy test.  That, too, was negative. He had torticollis (wry neck). We saw every specialist possible to find out what was going on.  The neurologist ruled out CP, the eye specialist ruled out issues, the ear specialist ruled out hearing problems, they considered a metabolic disorder, etc.  Very very frustrating!!

But, the doc did set us up with the Birth-3 program in our county.  We had a OT and PT come to our house weekly, as well as a learning specialist.  They did wonders with Joey and gave me great ideas for strength-building activities.  However, it is very stressful to have to monitor every little aspect of your child’s life or milestones, being it strides ahead or setbacks. It made me over-analyze EVERYTHING!  He eventually graduated from the program as was considered to have reached all the goals and milestones.  Yeah!

But shortly after, he began bruising everywhere.  After weeks of wondering, we took him in to the doc and the blood tests showed low platelets and low white blood cells.  They made an appointment with specialists 2 hours away for the very next day.  We monitored his blood counts on a weekly basis (not fun for anyone nonetheless a 3 year old).  We were told that any cut or bloody nose is a medical emergency.  We visited the ER on two occasions.  Finally, we said that this is enough and something else needs to be checked into.  They did a bone marrow biopsy.  The results were negative for leukemia and other nasty degenerative diseases.  Our family was down on our knees praising our Lord for these results.  We were told to just keep checking the blood counts every 3 months or so.  Eventually, they came up to more reasonable levels, but still not within normal ranges.

That month Joey turned 4 and boy did we celebrate (with rented blown up jumpy houses in the backyard and all).  This child would get anything he wanted that birthday.  It was such a relief that he was healthy again.

But that didn’t last long.  The next month his voice got scratchy.  Everyone commented on how cute he sounded.  He really did!  But then the following weeks were a nightmare.

On Monday I took him to the doc to check for strep throat or something like that.  He threw up all night long.

On Tuesday something seemed odd and I took him to another doctor at the clinic and she said the x-ray resembled walking pneumonia.  She prescribed antibiotics.  His fever was high and he continued throwing up every 1/2 hour.

On Wednesday I called the nurse who then contacted the doctor.  The nurse called back and said the doctor said viruses can be this way.  He was getting worse and I was getting more worried.

On Thursday we went to yet a different doctor at the clinic.  I questioned meningitis.  She said that it did not appear to be that and said that it does take a couple days for antibiotics to kick in for walking pneumonia. I very reluctantly said “Well, okay… we’ll wait until tomorrow then.”  That afternoon Joey couldn’t sit up, hadn’t eaten for at least 5 days, laid on the couch just listening to the TV because he refused to look at it.  He was pale, lethargic and couldn’t even cry — just moaned barely moving his arms or legs.

The next day I begged my husband to stay home and come with me to the doctor for additional support.  The doc decided to admit him.  Because the SED rate test showed inflammation somewhere in his body, they decided to do a spinal tap.  Guess what… he had meningitis.  After 2 days at our local hospital, my husband requested the doc on call come to the hospital.  This doctor, took one look and immediately made arrangements for us to be admitted to the Children’s Hospital 2 hours away.  He hugged us, prayed with us and assured us that Joey will get the best care available.  He had tears in his eyes along with us. So, at 1am I was in the ambulance and my husband was following.  The longest 2 hour drive of our lives.

Joey was admitted to the PICU.  They did MRI’s, CT scans, lumbar punctures, blood tests.  It was unbelievable.  I was in a twilight zone.  I was numb.  They hooked my boy up to machines, did PIC lines, IV’s, poked, probed.  We had 11 specialist doctors attending him. Joey not only had meningitis, he also had encephalitis.  The MRI showed large lesions all over his brain.  One doc, who I did not like at all, said that he will have brain damage but did not know to what extent it would be.

We had numerous neurologists on rounds.  One woman, our savior on Earth, said that she thinks Joey had ADEM.  Others disagreed.  There were heated arguments about this, says my husband.

(Side note:  I didn’t witness this because I had to go back home and tend to my 12 year old son who broke his hand the next day at his football game.)

So, my husband called me when I was driving back to the hospital and said we had to make a choice.

1) to get steroids to counteract the ADEM that only one doc believed that was happening.  The problem here was that the radiologist (top one in the US) said that he didn’t believe it was ADEM based on the MRI.  No other docs believed that was ADEM either.

2) to just continue on with the antibiotics until he recovers.

When driving back to the hospital with my sons that Saturday, my husband called to tell me that Joey was no longer responding to anything.  No finger movements, grips… nothing.  I was beginning to panic.  That’s when I saw the red and blue lights in the rear view mirror.  The trooper said I was going 81 in a 65.  I explained our situation.  He said he has to give me a ticket anyway.  I got out of the car and had a full blown panic attack in the ditch.  My son freaked and called my husband who ended up talking to the trooper.  He said that we need to get your wife to the hospital safely and would still give me a $300 or so ticket with 4 points.  He did, however, offer to stay with me until I could “calm down”.  What a nice State Trooper…I struggle to forgive this trooper till this day.  By the way, I fought the ticket and got my points back but still had to pay the fine.

Anyway, we went with the ADEM treatment.  My husband had a very strong feeling and peace about this.  But, had to wait 48 hours to start the steroid treatment because if the virus was still in his body, the steroids could send the virus to another organ in his body.

So, for 48 hours we looked at our breathing corpse son and wondered what area of the brain is being “eaten” away now.  We were completely helpless.  We put it in God’s hands at that point.  There was nothing we, nor the doctors could do but pray.  I struggled with this greatly.  What kind of God would put a child (and his family) through so many health issues over those 3 years of Joey’s life?  Why would he do this to our child who we tried for 7 years to conceive?  Will we ever be able to communicate with Joey again?  Will he ever be the same boy?  Will he have that spark in his personality?  Will he see, walk, talk ever again?  I would not wish this state upon my worst enemy.

Three days after the treatment, Joey began to respond.  He laughed when my husband did something silly.  He began to sit up, hold his head up, say a couple words.  We saw that stinker spark in his eyes.  It was then I knew we had our boys personality back.  We can work with therapists again, but I wanted my little boy’s personality back again, and it was!  Within a couple days, he was walking a few steps, watching Barney on TV, etc.  We witnessed a total miracle!

A med student came in on his day off because he heard that Joey was being discharged already.  Many nurses that hadn’t seen Joey for those 2 days stood in awe when they saw him sitting up and looking around. They were speechless. The neurologist who diagnosed ADEM and argued against all the other countless specialists came in and had tears in her eyes.  I believe she herself said that this was a miracle.  She happened to be wearing a Cross pendant that day, too.  I took that as a another sign.

We were expected to be in the hospital for quite a long time when Joey was at his worst, but we were discharged 10 days later.  He was walking awkwardly, talking unclear, and not eating much, but he was better.  We were told he would need extensive therapy when we got home.  I think we only went for a month a couple times a week.  Remarkable!!!

We too, were asked to tell our story at a telethon a few months later.  Going back to the hospital was amazing. We said hi to some wonderful nurses and docs who took care of our little boy.  Joey remembered where his room was.  This is amazing since the hospital was huge.  He also remembers the wagon rides that we would take around the hallways.  My husband said he got in pretty good shape walking those halls for countless hours.

To sum up, Joey was on many, many prayer chains.  My husband has remarkable faith, where I sometimes lack. Joey is doing wonderful and has no brain damage whatsoever.  The only thing we have noticed is that he doesn’t like alarms, loud music, ref whistles, basketball buzzers, car horns, etc.  He has very sensitive ears and can hear nearly any little thing.  That, is something we can live with…  besides earplugs work great!

May God bless your family and Neely’s health.

Mary

My heart broke as she shared her fears with me, the same fears I had faced a little over a year ago.  Many questions and few answers.  Marisa was fighting to survive and Holly was fighting to give her everything she needed to do it.  Those are the times, for me, when it is most difficult to share Neely’s story.  When the person hearing it so desperately needs a miracle

After 7 long weeks in the hospital, Marisa is home with her family and is making progress everyday.  She still has a long road ahead of her and she still needs our prayers.  Marisa’s Mom is going to write her story in her own words and has given me permission to publish it here when she does.  As you can imagine, she has her hands full right now, but I didn’t want to lose this opportunity to ask you to keep her in your prayers and to know enough about her story to keep her in your thoughts too.

Holly wrote this shorter version of Marisa’s story for a fundraiser that was held locally by HOP (Helping Other People) and I didn’t think she would mind me sharing it here temporarily. (See below) When I think of Marisa, my mind always go back to one particular video where she is taking some very difficult steps (literally) toward recovery and into the arms of her Mom.  I hope it inspires you as much as it does me.  Steps of Recovery from ADEM

Marisa’s Story (A short excerpt) In Holly’s words:

My name is Holly and my family consists of my husband Brad and our children, Marco (3 ½) and Marisa (2.) Marisa was born on January 2, 2009 and quickly grew into a sweet, loving, affectionate, independent, precocious, fearless and strong child. She warmed up any room because she was always happy and cheerful. She loved to give kisses and say, “I love you!” to pretty much everyone she knew.
I took Marisa to her 2 year well-baby check up in early January 2011 and her doctor had absolutely no concerns for Marisa’s health. She was a perfectly healthy child except for an occasional cold or ear infection. On January 31st, 2011, Marisa developed a fever of 103.6 and began vomiting. She continued to vomit and I took her to urgent care and her pediatrician 4 times over 9 days. Everyone told us she had a virus. I took her to the ER on February 10th and we were there all day while they ran tests. Everything came back negative including a head CT scan. The doctor said she had a viral infection and sent us home.

I took Marisa back to the ER the next day because she continued to vomit and began to grind her teeth.  I was almost hysterical and the ER took us to the front of the line. The ER doctor began running more tests. He eventually did a “lumbar puncture” which was abnormal. He thought she had meningitis or encephalitis or both. He immediately started her on IV antibiotics and we were admitted to the hospital.

We spent 5 days in the hospital while the doctors tried to figure out what was going on with Marisa. We were told possibly viral meningitis, bacterial meningitis, appendix rupture and eventually encephalitis. Marisa continued to deteriorate and on February 15th began to show signs of seizure activity. About 5pm Marisa began having a seizure that lasted 45 minutes. Her nurses issued a “rapid response” call throughout the hospital that signals an emergency situation. Several doctors and nurses rushed to her room and took her to the Pediatric ICU (PICU.) They put her on a respirator and essentially put her into a coma to stop the seizure.

Marisa had her first MRI on February 16th and she was diagnosed with Acute Disseminated Encephalomyelitis (ADEM.) ADEM is an auto-immune disorder of the brain and spinal cord. Marisa’s doctors explained to us that Marisa got a virus which confused her immune system and caused her immune system to begin attacking the tissues of her brain and eventually, her spinal cord. The infectious disease doctor did numerous tests to determine which virus caused this, but it was gone by the time Marisa was tested.

Marisa slept until February 23rd, when she opened her eyes for the first time in 8 days. She came off the ventilator on March 1st.  She was moved out of the PICU to the rehabilitation unit on March 11th. Marisa was put back on seizure medication on March 15th and will probably stay on this medication for a year or more.

We now know from Marisa’s MRIs that she is a very fortunate girl. Her MRI on March 4th showed she had significant inflammation and demyelination of the white matter in her brain and some demyelination of her spinal cord. She had significant deterioration of her deep brain structures and her cerebral cortex. The good news is that Marisa’s doctors did a follow-up MRI on March 17th which shows us that her brain is healing. Marisa is lucky that most of the deterioration of her brain is reversible. However, she has a long road ahead of her. Her doctors expect it could take up to two years before Marisa is completely healed. Marisa’s doctors have warned us that Marisa could have some permanent disabilities, but of course, our family plans to work with her and we expect her to make a complete recovery.

The outpouring of support, love, prayers and help from so many people in our area and other parts of the country has been amazing. It has helped us through the worst time of our life. Our family feels so loved and we appreciate everything that everyone has done for us. (Source: Helping Other People, H.O.P.  APRIL 2011 NEWSLETTER)

Neely spent time at Roger C Peace while she was recovering from ADEM and the therapists there were wonderful.  The Run for Thought was a great way for us to give back.  I thought the 5k might be a little much for the Thompson Crew – so we opted for the 1 mile fun run and even convinced Neely’s Aunt Carrie and Uncle Potter to join the fun. I was grateful to have the help when Neely decided she needed a “piggy-back ride” after about 1/10th of a mile.  Whew!

Ava and Uncle Potter sprinted the 1 mile and were the first to cross the finish line – Their triumphant finish line cross occurred with Neely cheering and clapping (from behind)  It was a beautiful day – and a great reminder of how far we have come from that “1st step” taken in the Children’s Hospital a little over a year ago.

Dance Marathon is a nationwide movement, involving college and high school students at over 150 schools across the country who raise money for the Children’s Miracle Network hospital in their community.

Last Year Dance Marathons raised over $6 million dollars for local children’s hospitals. And that is pretty amazing!

We arrived at CU at 5:00 pm on Friday Evening but the dancing didn’t stop until almost 9:00am the next morning.  Neely’s coach turned into a pumpkin shortly after mid-night so we caught a few zzz’s at the local Courtyard Marriott before heading back to finish out the party early on Saturday.

I’m not sure what I expected when we arrived, but words really can not describe the overwhelming enthusiasm and generosity that we felt from the students there.  There were over 350 dancers and a constant stream of entertainment to keep everyone energized and on there feet. (I have to admit though – it didn’t seem like they needed much help!)

Neely was dazzled by a beautiful Snow White that stayed by her side to color, play balloon toss, and have loads of fun.

She danced on stage, ran with the CU Tiger, was entertained by a former Miss Clemson, Susannah White, and very literally had “the time of her life.”

And Ava had her share of the spotlight too breaking out her hula-hoop to entertain the crowd and making friends with a sweet little girl from another Miracle Family.

Not only did this amazing group of students raise over $26,000 for GHS Children’s Hospital, they gave our family a night of memories that we will never forget.

Standing in a room full of college students chanting “FOR THE KIDS” knowing that while they could have chosen to do a million other things with their Friday night, they chose to be with us.  Together we danced for the children who may have yet to be diagnosed, but who stand a better chance of survival because of what was accomplished on that night.

I’m so proud to be part of The Children’s Miracle Network. I’m so proud to be part of The Clemson University Dance Marathon. And I’m so thankful for the Greenville Children’s Hospital.

She certainly isn’t old enough to tell her own story at this point.  I hope that one day she will – and that she will be a contributor to the thoughts and memories that are published here.  But until then, I want to do my best to tell that story for her.

Sometimes I catch myself just staring at Neely while she plays.  She completely amazes me.  I look at her eyes and I think about the brain that is thriving inside her little head. I remember those MRI images and Dr. Morales’s descriptions of what was happening as she healed – and I just stare in wonder and amazement.

And I see other people doing that too. We have been fortunate to have so many people following her story, praying for her health, and supporting our ability to cope ~ And now they stare in amazement too.  I wonder if Neely notices. If she does – she doesn’t say it.

People say things like, “Your prayers were answered. She is a miracle.”  And they are right. My prayers were answered and I do believe she is a miracle. But I can’t help but think of all the parents that still pray for the health of their children. Their prayers have not yet been answered, and no one can explain why. There is guilt that comes with surviving.

Neely’s story has given me the opportunity to connect and talk to parents all over the country. Some of those parents are still praying for answers and for their child’s health. I think Neely’s story gives them hope. And that inspires me to keep telling it.

Many times people have said, “God must have something very special in store for Neely,” or “I can’t wait to see what Neely becomes.” That is a heavy burden for a 4 year old to carry. Jamie and I have spent a lot of time talking about that and of course we wonder too, what she will become.  But not because of her recovery – Just because she is our little girl.  I heard Dr. Morales say once that Neely’s story has created so much awareness about ADEM (he was referring mainly to our area of SC) that she has already helped many other children that may develop it and the doctors that need to diagnose and treat them.

I like to think that by creating that awareness, Neely has already achieved “that something very special that God has in store for her.”  And maybe some of that burden will be lifted.  I want to carry that burden for her – Every parent would feel the same way about their child.  I do wonder how other parents manage those burdens and if the choices we are making to share her story, are the right ones.  We just try to stay focused on the opportunity that is in front of us. That is all that we can do.