Monday, August 16th

Wow. So much to report!

Sunday, Jameson took several steps on his own. He got out of bed and was able to walk from one side, around to the other side, while holding onto the bed.

The doctors reviews a recent MRI and found what appear to be two lesions - one on his brain and one on his spine, between his shoulder blades. They're small enough that the doctors hesitated to even refer to them as "lesions". Because Jameson is making such progress, they truly feel they are nothing of any concern, but to be certain, he will have to have another MRI in three months. If the lesions increase in size or spread, it could be an indication of Multiple Sclerosis. It's a common occurence for TM to become MS later in life. I'm trying very hard not to let this worry me, but as anyone with children can tell you, this is easier said than done.

Today I signed consent forms for Jameson to take part in a research study. Luckily, this didn't involve much participation on his part. I just gave them consent to review his records and compare them to those of other TM patients. During my visit with him today, he got out of bed and walked across the room to hug me! He can walk forwards and backwards, but loses his balance when trying to walk on his heels or his tip-toes, as the doctor had him attempt.

Also today, the doctors consulted with one another to determine the best course of action concerning Jameson being released from the hospital. We all assumed it would be late this week. Instead, they determined he could go home.... TODAY!  Jameson is HOME now, after a celebration dinner at Applebee's. He's resting on the couch, doing his word puzzles. We have all the meds we need to give him. He'll go to physical therapy three times a week and will start seeing a homebound tutor next week.

We're all amazed at the miraculous progress Jameson has made in such a short time. We still have a long road ahead of us, but his prognosis is good and his attitude and determination is admirable.

We're so proud of you, Jameson!

Saturday, August 14th

Jameson continues to make improvement! Although discouraged a couple of days ago, his positive attitude seems to have rebounded. Two nights ago, he stood on his own to hug Kevin goodbye. Yesterday, he showed me how he can stand unassisted, without holding on to anything. He moved from foot to foot, and could lift his legs up, bending at the knee. He grimaces, as though it's a struggle, but he's always willing to make the effort.

We had an issue with newborns being placed in the other side of Jameson's room. After being kept awake the majority of the night, Jameson wasn't able to do well at physical therapy the next day. We requested that the baby be removed from his room. Evidently we should have specificied that no other newborns be placed in the room, because after the first one left, a second one took its place. I was furious to hear of Jameson getting another poor night's sleep as a result of having to share his room with a sick baby. Hopefully we complained loudly enough that it doesn't happen a third time.

Thursday, August 12th

I had an interesting visitor yesterday. The father of the child who told me he "didn't care" that Jameson was sick paid me a visit to clear the air about what happened and to ascertain that Jameson was indeed, sick. I tried to remain calm as I told him how serious a situation this was, and how very hurt I was by his son's flippant reaction to the news. He apologized for what his son had said, and offered prayers and well wishes. He seems to think that the child didn't take my message seriously. I was happy he came by to put the issue to rest.

Jameson is starting to get discouraged. He's tired of being cooped up in a hospital room and wants to come home. At the very least, he wants one of us to stay with him at the hospital. Kevin was visiting him last night, and Jameson wasn't feeling well. He had an upset stomach due to constipation. As if these things weren't enough, he has a roommate - a newborn baby. The baby was screaming so loudly while I was on the phone, I couldn't hear anything but him. Why on earth would they place a newborn in with a nearly 12 year old boy?

Poor Jameson didn't sleep much last night, because the baby, not six feet from his bed, screamed most of the night. As a result, he didn't do well at physical therapy today. This angers me to no end. We have a window of 90 days during which Jameson can recover from this illness. If he's too exhausted to work when he needs to, it could affect his recovery. I told him that if the baby keeps him awake tonight, to buzz the nurse every five minutes until the child is removed from his room. I'm sorry for the perils that plague the other child, but my son shouldn't have to suffer because of it. They can - and should - find another room for a newborn baby.

Not only does the presence of the new roommate affect Jameson's sleep, but it affects my ability to visit him for any length of time. Prior to anyone else being in the room, I could bring Darren with me and allow him to play safely while I visit and tend to Jameson's needs. With someone else in the room, especially a newborn, I'm limited to keeping Darren in his stroller or holding him. Needless to say, our visit today was a short one. I understand the need to double up when the hospital gets full, and I don't mean to sound selfish. But as far as Jameson is concerned, his recovery is my number one priority. If he can't sleep because of a crying baby, then I'll raise holy hell until the crying baby is removed. Period.

I talked to Kevin on the way home and raised my concerns with him. I mentioned that Jameson told me he slept poorly and performed poorly at physical therapy, as a result. He contacted his daughter-in-law who is friends with a higher-up at the hospital. They assured her that they will do whatever needs to be done to make certain Jameson sleeps peacefully.

I've heard conflicting reports on when we can expect Jameson home. Recently, I heard he could come home as early as this weekend. Now we're being told he won't leave the hospital until he can walk. I actually prefer the latter. As anxious as I am to have my son home, I don't want to risk injury by him being in a normal home environment without trained professionals seeing to his every need. I miss him like crazy, but I prefer he come home when he can walk through the front door himself.

Wednesday, August 11th

I had totally forgotten that Jameson isn't allowed visitors under the age of 15, unless they're siblings. I mentioned that to him when I talked to him this morning, but he had it covered...
"I know, mom. Austin is going to meet me in the cafeteria when he comes."

Austin called his hospital room last night, which pleased Jameson to no end. I hope he's able to visit him. It would make his day.

Jameson claims to be able to stand for a little over 30 seconds, unassisted. I'm a little frightened that the improvements aren't coming as quickly as they once had. It used to be, a new day brought a new movement or a new milestone. Now, it's almost as though we've reached the peak. I hope that's not the case. Doctors assure us that he's continuing to improve in strength. I'm grateful for that, but I can't wait for the day I hear about - or see - Jameson walking again.

Tuesday, August 10th

I've elected to go to the hospital every other day, and Kevin agrees to go there on the days that I don't. This will not only cut down on my fuel expense substantially, but it will give me a chance to spend some time with Griffin and Darren. I'm spread awfully think these days, between the hustle and bustle of back-to-school events, and a trip Doug and I have planned for the end of the month. Obviously my first priority these days is Jameson, and getting him well, but I don't want anyone else to feel neglected or forgotten.

Kevin spoke with Dr. Connolly and found out why she opposed the plasma replacement therapy. She said she's performed many of them and has seen several children "code" during the process. The procedure is a risky one. 30% of the patient's blood is take from the body prior to the "new blood" being entered into the system. After hearing this, I was in complete agreement that we skip this approach unless all other options are exhausted.

Today, I dropped Doug off at the airport and took Evan and Darren to see Jameson. He looks and sounds fantastic. His attitude remains upbeat and inspirational. If I ever thought about letting this situation bring me down, all I have to do is see the sparkle in Jameson's eye or hear the excitement in his voice. He takes pleasure in the simple things - like a TV that swings around the bed and food made to order and delivered whenever he wants it.

Physical therapy is working him hard and the doctor says he's making tremendous improvement. Jameson got to go to one of the gyms at the hospital and shoot hoops. He was thrilled.

Although Jameson still isn't able to stand on his own, his strength improves. There is talk that he could come home soon. I'd be lying if I said this doesn't scare me to death. Right now, he receives 'round the clock care, and has people to assist him every step of the way. When he comes home, this all falls on me - or his dad, wherever Jameson happens to be. Currently, the boys go back and forth between houses because of our joint custody arrangement. This will be a challenge once Jameson comes home. I'm up for the challenge, but I'm the first to admit, caring for my son will become a full time job and life won't be the same in doing so. But when faced with the alternative... I'll do whatever I have to do. I love him so very much.

Tonight, my faith in humanity was restored, as two of Jameson's friends came to the door. They said they wanted to visit him, and wanted me to write down the information they would need. I wrote down the phone number to the hospital room, and the address of the hospital. I hope they're able to visit him. I think it would do him a world of good to see he has friends who truly do care about him. I know it did for me.

Sunday, August 8th

Today is Griffin's birthday, and I'm bound and determined that it won't be overshadowed by Jameson's illness or hospital stay. Doug and I got up early and took Darren to see Jameson. Jameson adores Darren and vice versa. I knew it would do him a world of good to see him baby brother and I was right. His eyes lit up when I pushed Darren's stroller into the room.

Evidently, none of the nurses were strong enough to carry Jameson to the bathroom the way Kevin had. They were afraid to lift him for fear of hurting him. I can see their point and obviously don't want him hurt, but.... why on earth don't they have someone on staff capable of lifting a 100 pound child? Jameson is not the biggest kid on earth, nor could he possibly be the only one there with this issue. Because of this, they had to put Jameson in a diaper. This was as sad a turn of events as any so far. Here was Jameson, making all this physical progress, yet suffering a setback, emotionally.  I hated the thought of him, nearly 12 years old wearing a diaper because no one could help him to the bathroom. Luckily, they soon came up with the idea of wheeling a portable commode into the room, so he could go in a somewhat normal fashion. Not quite like normal, but substantially more dignified.

We visited with Jameson until the baby got restless and bored, and Jameson wanted to take a nap. When I got home, I sent out some emails to some of Jameson's friends (through his Facebook page). I wanted to let them know what happened and ask them to please keep him in their thoughts and prayers. One girl, Cate, wrote back right away and said she would pray for Jameson and asked me to keep her informed. One friend, however, wasn't nearly as considerate. I realize this boy and Jameson have had their issues and had basically ended their friendship. I had hoped, however, that difference could be put aside and this child would be sympathetic to the seriousness of this illness - if not for Jameson, then for heaven's sake, for his poor mother!

Instead, I received the following reply:

"Don't take this personally, but I don't care. I don't like Jameson. He was mean 2 me for 5 months."

That child was lucky he wasn't standing in front of me as he said it, or there would be two eleven year olds in the area who couldn't walk. My blood boiled as I wrote back, telling him that this was a serious situation and that there was a possibility Jameson might never walk again. I told him I had hoped he was mature enough to care, but that I was wrong. He only wrote back with a frowny face. I let it drop even though what I really wanted to do was throttle him.

Saturday, August 7th

This would be the first day I would see Jameson since he left for his trip two weeks ago! I'd seen the pictures Kevin and my brother had sent back, but it certainly wasn't the same as seeing him in person. I couldn't wait to put my arms around him and smell his warm, sweet skin again.

I got up at 4:00am and prepared to make the drive down to Children's Hospital. My oldest son, Evan, went along while my husband stayed home with the youngest boys.

I walked in the hospital room and saw my beautiful son. He was sound asleep, still exhausted from the long trip home. I couldn't take my eyes off of him. I stroked his hair and kissed his forehead. He woke up and sleepily said, "Hi mom... " He smiled at me and I fell head over heels in love with him all over again.

Jameson has 100% feeling back in his legs and feet. He can bend and stretch them normally. The only things he can't do, are stand and walk. He needed to use the bathroom and Kevin helped him in, by holding him around the waist. I was saddened to see Jameson's legs and feet dragging behind him like a newborn. He could bear very little weight on them, and it was as though he had forgotten how to put one foot in front of the other.

Jameson was able to use the toilet and then Kevin took him into a walk-in shower room down the hall to give him a bath. The wheelchair is made of a waterproof PVC pipe, and the seat is an open toilet-type one. What an ingenious idea. This is such a time saver, and allows Jameson to get a thorough shower.

Jameson seems to like the hospital, its amenities and the staff. The food is good and he eats a lot of it. He orders everything on the menu and puts it away in record amounts.

As for treatment, in California, Jameson received a five-day round of a high-dose steroid. Known to cause blood sugar levels to rise, they monitored his numbers carefully. His blood sugar never got above 200. (Another number for Jameson to remember!) He also received intravenous gamma globulin. He always experienced a euphoria after receiving this treatment. It was also recommended that Jameson then receive plasma replacement therapy. His new doctor, Anne Connolly, disagreed....

After a couple of hours, Kevin, Evan and I left the hospital. It was hard saying goodbye to Jameson again. I drove Kevin home and Evan stayed with him, since he hadn't seen him in a week. I made plans to visit Jameson again the next day.

Donations

I've tried to include a Paypal donation button at the bottom of each entry, but there is a coding conflict with Blogger. I have difficulty asking for help, and hesistated in placing an advertisement for assistance on my blogs about Jameson. Although Kevin carries health insurance on our sons, our portion of the doctor, hospital and assorted medical bills will be astronomical. Being out of work, I am  - like many people - counting every penny. My trips to Children's Hospital cost around $15 a day in gas from my home in the far northwest suburbs of St. Charles County to downtown St. Louis.

Not knowing what the future holds for Jameson, we could be in for a long, expensive road of rehabilitation We might also be in need of costly equipment, medication or home health care professionals.

The majority of donations received will go towards Jameson's mounting medical bills and related expenses. I will also be donating a portion of all proceeds to the Transverse Myelitis Association.

I know this is a tough economic time for most of us. Please don't feel obligated or pressured in any way to contribute. Many people have offered to help - or have asked how they can help. This is a way not only to help Jameson personally, but to help find a cure for this disabling condition. Any amount - no matter how small - will be greatly appreciated. You can enter a donation through Paypal, to the following email address: LindaLarimore@gmail.com

Thank you!

Progress

Jameson continues to show amazing daily progress. His first step forward came at the hospital in California, when his catheter was removed. He was able to urinate on his own, and sense when he had to go. Little by little, Jameson began to regain feeling in his toes, then his feet. He first moved his right leg, then his left.

Doctors were encouraged by his progress, and confident in their claims that Jameson would make a full recovery. He wore "boots" to help his feet keep their shape as he regained feeling:

Listening to his baby brother laughing on the phone, proved to be a dose of good medicine:

Kevin remained in California with Jameson until Friday, August 6th, when they were given the clearance to return to St. Louis. Although doctors felt he would be safe flying commerically, they preferred that Jameson be flown via MedFlight jet. Luckily, insurance approved the flight, and plans were made to bring my little boy home - or at least, to a hospital closer to it.

Physical therapists continued to work with him to improve the strength in his legs. Soon Jameson was able to bend his legs and pivot his feet as he could before becoming ill. He was still unable to stand unassisted.

I have nothing but good things to say about the staff at Providence Tarzana Hospital, where Jameson was taken and treated. He received VIP treatment and was made to feel safe and loved.

Shortly after 4:00pm Pacific Time, Jameson boarded a private jet, bound for an awaiting ambulance in St. Louis. He would have to immediately be admitted to Children's Hospital downtown, for an indefinite length of time. I was so happy that my son would soon be 38 miles from home, versus 2,000.

I will forever be grateful to my brother and sister-in-law for the care and love they showed Jameson while he was in their care. Their attentiveness to his symptoms quite possibly saved his life, or at the very least, saved him from further paralysis. I love you guys.

Attitude is Everything

Jameson's attitude has been an inspiration to everyone around him. He amazes the medical staff and his family and friends with his strength and determination. To him, this is a minor glitch on the road to bigger things. We know there could come a time when he could become discouraged. The adults involved - his father, my husband, brother and I are in agreement; We aren't going to go into too much detail with Jameson about his prognosis. For now, we feel it's important to keep his outlook positive. If he becomes resentful, angry or bitter, it might prohibit a full recovery.

Aside from the initial fear Jameson showed, he has never been anything but compliant, courageous and brave.

As Jameson makes progress towards recovery, he continues to be a normal kid, interested in normal things. The day he started getting feeling back in his feet, I called him. "How are you today, buddy?" I asked, optimistically. My heart stopped when he said, "Not so good mom.... "

All my worst fears were revisited, as I braced myself the news. I was stunned and relieved to hear, "The Cardinals traded Ryan Ludwick! How could they do that? I can't believe blah blah blah.... oh and, I can move my right foot now."

Jameson sees these accomplishments as trivial behind something as colossal as the trading of a beloved sports figure. We see it as monumental, and shed tears over a twitching toe...

Transverse Myelitis

My brother called me and we talked about the doctor's theory that Jameson suffers from Transverse Myelitis. He went through something similar with his own daughter - my niece, Julia. He knows the terror of being faced with the possibility of losing a child. He gave me some good advice, and it's advice I've taken. He was disappointed that the doctor turned me to the internet to learn more of Jameson's condition. His advice to me was to stay off the internet. Most informational websites offer worst case scenarios, and textbook rhetoric. My son's diagnosis was assumed, simply because there was no test that conclusively confirmed it. More serious things were ruled out, but the strong possibility of TM remained.

The next few days are a blur. I spent the majority of the weekend numb, unable or unwilling to accept that not only could my son be paralyzed the rest of his life, but that I could lose him. I didn't know much about this illness and what I did know, terrified me. Nothing made sense to me. Going on with day to day obligations was difficult. I forgot how to do laundry. I stared at the sink full of dirty dishes, perplexed by them. Sunday, I realized I hadn't eaten since Thursday night.

Sleep eluded me. As I lay awake, I fought the visions that entered my imagination. When I closed my eyes, I saw my once active, athletic son crumbling to the floor as he tried to stand. I envisioned him in a wheelchair. I imagined having to make the call that, despite the doctors' best efforts... we'd lost him. It was far less frightening to just stay awake, than it was to try to sleep and see all the "what ifs" life had in store for my beautiful boy.

My heart raced and I was short of breath, as I sat waiting for the phone to ring. I remained glued to my computer, awaiting updates from my brother or ex-husband. When the phone did ring, I nearly died of  heart failure, fearing that this was "the call".

At the peak of this illness, Jameson had no feeling or movement in either of his legs. He was unable to urinate or have bowel movements, and couldn't sense when he needed to go. During his first MRI, the technician noticed that his bladder was full. He was asked, "Do you need to go to the bathroom?" Jameson answered no and mentioned that he hadn't gone since the night before - more than 24 hours prior. It was then that he was catheterized. The release of urine alleviated the stomach pain Jameson had been having. He was able to go, but still wasn't sensing when he was going.

The paralysis traveled up Jameson's spine, preventing him from sitting up on his own without slumping from side to side. His thoracic cavity was weakened, preventing him from coughing. Eating became a hazard for him. If he were to choke, he wouldn't be able to cough or gag to expel the food.

I continued to prepare myself for the worst. I cried easily and often. I said prayers and requested prayers from others. I'd never been a big "believer", but this was my son, and if there was a chance prayers would save him.... then pray I will.

Notes and comments of support flooded my inbox and Facebook wall. People I never so much as passed in the hallways of my high school, were asking their churches to pray for Jameson. People I only know from online made offers so generous, I get a lump in my throat just thinking about them. Local people offered to watch the boys so I could fly to Los Angeles to be with Jameson. I was discovering who my true friends were.

Jameson's Illness

Jameson was excited to be going to Los Angeles! He would be traveling alone for the first time. I was terrified at the thought of him flying alone. Little did I know, it would be the least of my worries concerning this trip.

I hugged Jameson goodbye on Saturday, July 24th, 2010, and his father took him to the airport. He boarded his flight and wasn't the least bit scared. He called me when he arrived in Los Angeles. My brother, Trevor and his wife, Dana, showed him a fantastic time in California. They went swimming, to the beach, Universal Studios, two baseball games and Hurricane Harbor.

Jameson called me everyday, and my brother and sister-in-law sent pictures of his activities. He was having a good time, and I knew he was in good hands. He was due to fly home on July 31st, and I couldn't wait to see him again!

I called Jameson on the morning of July 30th, around 7:00am pacific time. He told me what a good time he'd had at the water park the day before. He was excited to be going to Malibu that day. He was sad his trip was drawing to a close, but happy that he would soon be home. I told me he missed me.

Less than two hours later, Trevor called me to tell me that Jameson was having severe abdominal pains. Thinking he was constipated, Trevor and Dana treated it as such. I got on the phone with Jameson, who by this time was hysterical. I tried to talk him through it, but there was no calming him down. That's when he told me...

"Mom! I can't move my legs!"

My brother, sister-in-law and I were all convinced that Jameson's symptoms were psychosomatic. He tends to be overdramatic, so we thought that - for whatever reason - Jameson was trying to pull something over on us. Why else would he be suffering from both a stomach ache and paralysis in the legs?

Dana got Jameson to take a nap, hoping he would awaken feeling fine again. Several hours later, she called to tell me that his symptoms hadn't improved and they were taking Jameson to the emergency room. I cried, afraid of what might be going on. He was capable of faking a stomach ache, but to fake not being able to move his legs was an act beyond him.

The next twelve hours were some of the scariest of my life. Kevin made arrangements to go to Jameson, planning to bring him home. I planned to stay here with the other boys, believing they would be home the following day. I vaguely remember speaking with a pediatric neurologist at 1:00am. I recall him spelling the terms that would soon become household words...

T-R-A-N-S-V-E-R-S-E  M-Y-E-L-I-T-I-S

After I hung up the phone with the doctor, I hesitantly typed those words into a Google search. I wish I hadn't. I scanned the first website that came up in the search. I saw terms like "permanent paralysis", "infection on spinal cord" and "potentially fatal"....

I hoped there was a mistake, but the symptoms were undeniable. They were Jameson's, to a "T"....

Jameson's Childhood

Jameson was, and continues to be, an extraordinary child. Never have I met anyone so intelligent. He loved flash cards and playing cards of all sorts. He enjoyed large collections of small items, so he could count them and line them in strategic order. He had a fascination and knack for numbers from an early age.

He was always a picky eater and hesitated to try anything new. He loved McDonald's french fries when he was a toddler, and referred to them as "bries". Whenever we would pass a McDonald's, he would point to the golden arches and say, "I deed bries!" (I need fries)

Jameson loved game shows and playing poker. He would get on the computer and enter poker rooms on my gaming sites. He would play against - and beat - adults!

Jameson was reading by age three. Upon entering kindergarten, he was reading on a third grade level. Surprisingly, however, Jameson doesn't like to read. He loves numbers and stats and facts of all kinds.

He always did exceptionally well in school. He never got a grade lower than a B. His memory is impeccable for anything he's ever learned. He can add numbers in his head.

When he was eight, Jameson took an interest in sports. He loved all of it - football, basketball, hockey, soccer, auto racing... but he especially loved baseball. At the age of ten, he started playing little league. Until his illness, he had dreams of a career in professional sports.

Meet Jameson

This is the story about my second born son, Jameson Christian Michael McCurdy. When Jameson was 11 years old, he was diagnosed with a rare neurological condition, called Transverse Myelitis. In this blog, I'll journal Jameson's journey through this frightening illness.

My name is Linda, and Jameson's father is named Kevin. We are now divorced, and I'm remarried to Doug. Kevin and I have three sons together and Doug and I have another son.

Jameson was conceived on December 28, 1997. My pregnancy with him was relatively normal, and the least eventful of the five I've had. Jameson was named shortly after conception. I knew all along he was a boy, so I didn't bother to have a girl name ready! The middle name "Christian" was chosen to honor of friend of Jameson's father. "Michael" is my dad's name. We hadn't planned on giving him two middle names, but we weren't willing to give up either name. Jameson is a name I had heard many years ago, and loved. So it was: Jameson Christian Michael.

On September 9, 1998, I went to see Dr. Williams, my obstetrician, for my 38 week pre-natal check up. Jameson wasn't due for nine more days, and the doctor felt confident after an exam, that I wouldn't be going into labor anytime soon. Four hours later, I had my first contraction.

I called Kevin and told him to come home. I then called my friend Sarah to come and stay with our two and a half year old, Evan. Because of a local school bus driver strike, the traffic to the hospital was unimaginable. We finally arrived - an hour and half after leaving home.

Jameson came very quickly. The attending nurse broke my water, and baby came right out. He was absolutely beautiful. He was dark complected, tiny and had a headful of dark hair. He cried loudly. I fell head over heels in love him.

Jameson Christian Michael, born September 9, 1998 - 7:06pm - 6 pounds, 7 ounces - 20 1/4 inches long