Well…if you will Excuse Me While I Cry, I would appreciate it. Hunter’s teacher, Ms. Kim, sent this to me last week. He spelled his name by himself for the first time ever. Let me explain the “by himself” part.
Hunter has Opsoclonus Myoclonus Syndrome. His condition is 1 in 5 million. It affects everything from speech to feeding himself to walking, excessive shaking, low muscle tone. Basically going from a 3 yr old normal child to a 3 yr old newborn who shakes violently.
Backend of Condition
The “front-end” of the condition is what I described (oh so briefly) above. The “back-end” of his condition is low functioning, memory loss, learning disabilities, cognitive, and sleeping issues. Oh, let’s not forget the rages and fits.
Anyway, when Hunter holds anything to write or cut with, a teacher will place her hand over his and put pressure on it. He has hand/wrist/arm weights and he does use those but he doesn’t like to. So now, they just do hand over hand to give him stabilization.
When he wrote his name, he DID NOT NEED any hand over hand. He copied the letters he saw BY HIMSELF. Alone. WITH NO HELP! I feel like I am screaming. Frankly and unashamedly, I am!
Let’s Just Keep on Going
A year ago, we were told to bring him home. That he would succumb to his condition. Now, he is learning, growing, writing, and spelling his name! God is SO GOOD and so faithful. I am in awe.
He chiggers me so badly somedays. I mean, you all know a 5 yr old can get all up in your stuff and jump up and down on your last nerve. Clearly, in this video, he was wound tighter than a drum. Yet, the alternative as to where he was a year ago. I will take this wild child over that sad little boy any day of the week!
I had a doctor tell my other mom last week that he was a Christian but that the day of miracles is over. That he could explain everything with science. God didn’t do miracles anymore…that’s why He created doctors.
I just smiled and said, “You should meet my son.” He didn’t have much to say to me after that. Here is a video of him a year ago. Now, tell me that my God didn’t and isn’t performing a miracle in this child?
Reflecting on My Boy Walking Without Assistance after 3 intensive days of therapy. I can’t even adequately verbalize my emotions. Amazingly, I watched him stand up, by himself. As a result, this was a moment I will never forget. Then, because He is awesome, he RUNS to the ocean. I’m so thankful that I caught that on my camera.
Yes, it is framed, in my house. Hunter, running to the ocean, carrying a stick. Fearless, confident, and strong. I’m amazed at God’s goodness. We still have a long road to go. Realistically, this is an unknown condition. God has healed him…we are just waiting for the complete manifestation of that healing in his little body.
I cannot adequately describe the feeling I had when I saw this. Shock. Dismay. Confusion. Hallucination. Yet, there he was standing, squatting, standing back up, and then running. It took a moment for it to sink in but when it did. Oh, but when it did. I couldn’t contain myself.
I called my sister after I sent her the video. Loudly, I told her she had to watch it while I was on the phone. As she did, I could hear her silent cries and the whispers thanking God. Then, I called everyone else I knew!
With So Many Decisions to make, it is almost overwhelming. We have to weigh the pros and cons of each thing. How does A work with B and what if you throw in C to the mix, how does that affect A and B? Can they all play well in the sandbox together? What are the side effects? If A has a side effect, we give medication to offset that, right? What if C doesn’t agree with the medications to offset the side effects of A?
Confused? I am.
Which hospital? Currently, we are at UK Children’s. We are pleased with his current physician, but the drive is 4.5 hrs and that is tough. I have to schedule it on Fridays so Big Daddy can go with me. We leave at about 6 am and get home at about 12 am. It is a long hard day.
We have an appointment at the end of the month with Vanderbilt Children’s hospital. It is only about 2 hrs away. The hospital is amazing, but that is one of the places that Hunter was misdiagnosed at this hospital 2 yrs ago. That knowledge has put a sour taste in my mouth, to say the least.
I have no idea what we are going to do. We loved UPMC in Pittsburgh, but to travel that far away is tough. Doable, but tough. They had an amazing staff. Dr. Kavita Thakkar runs the OMS clinic and she is just so kind and good.
Port or no port? He is beginning to develop scar tissue from all the many IVs and blood draws he has had. We are going to have to do something and I’m thinking a port is what we need to do.
This will help with blood draws, his IVIG can go into it easily, and soon chemo (or plasma exchange). I feel like this is going to be a good option for us. What hurts my heart is I don’t want my 5 yr old to need a port.
Cyclophosphamide, Rituximab, or Plasma Exchange. I am almost 100% certain that Ritux is out. Hunter had 3 doses of that and it really did nothing for him. He has to have chemo or the plasma exchange even though he does not have Neuroblastoma. The longer he is the past the onset of symptoms, the less likely he is to develop cancer.
Basically, this is maintenance when he is “in remission.” He will have up to 6 treatments of one of these drugs. Any more after that can cause lasting damage to his body. Who am I kidding, we are pumping this child FULL of toxins…heartbreaking.
Part of this decision was made for us. In order to keep our current neuro, she suggested that we try to do the above (Decision 3) options at home. In doing that, we would only need to go to Lexington every 3-6 mths. Sounds good, doesn’t it?
It does until it doesn’t.
We thought we were good to go with having infusions done at the house. In the 11th hour, the company decided they would not do it. Their reasons? 1. He had convulsions (Uhm, no. He has tremors. Convulsions and tremors are not the same things). 2. It takes too long. They wanted to push it in 3-4 hrs and this is a 6-7 hr push. I will not yield. 3. The doctor knows *nothing* about OMS. Well, sir, no you don’t…but you can learn.
Now we are hearing they want to train us on a different method of infusion, at home. We are supposed to meet with them at the end of the month to discuss the pros and cons of this approach.
Reflecting on 3 Month Post Diagnosis Stuff. This was written back in September 2017. It has not been the easiest time, but we are Going the Extra Mile. We spent about 2 weeks, at onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital). During those 2 weeks, he had 8 high dose steroids treatments and 1 high dose IVIg treatment. Once we were released, we went back a month later, and we got the first Rituximab treatment. In 2 weeks, we went back to get the next dose of Rituximab. We will go back in January to get the 3rd dose.
Round 2 Rituximab
When Hunter had his second round of Rituximab, his first-round was 2 weeks prior, and it did not yield the results that we had hoped it would yield. We did not see Dr. Sweeney (or any doctor for that matter) during that first round. This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.
I was able to ask many questions to Dr. Sweeney. I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand. He has a heart for children. Any single man who knows the theme songs to ALL the Disney movies and ALL the characters of each of those movies is a man who is in tune with his audience of kiddoes.
Trying to Understand
I understood that we would know if this course of treatment was going to work within the next two weeks. Hunter still has residual steroids in his system, as well as, IVIg. In two weeks, though, all of that should be out of his system, and all remaining B cells should be killed off by this last Rituximab treatment. Then….we will either see improvement (aka remission), or we will need to rethink the course of action that we need to take.
Staying Healthy is a Priority
In the meantime….we know his immune system is comprised. To help with that, when we are out in public or around sick people, I went on the hunt for some face masks for children. Sadly, I could not find any. I did get a few adult-sized ones from my son’s orthodontist, but nothing that would fit his face. Finally, I went to my “go-to” place…Amazon. Oh…I love Amazon. I found what I was looking for and they work perfectly (though he hates them).
My next course of action was to help ease his anxiety about going to the hospital. Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/manhandled until I just about went all Hulk on them. Then…we met the IV team. Oh. My. Stars. Let me just tell you….they are all angels sent from heaven.
Going the Extra Mile
Maybe I went overboard….maybe I am coddling him. He is 3, my baby, and he did not ask for any of this to happen. At this point, the child will get whatever he needs to help him through this process.
What the Meds Do When they are Needed
The steroids were to get the inflammation down. The IVIg is immunotherapy, and it replaces the good stuff in his body. Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain. The first dose killed off the majority of them. The second dose killed off the baby ones. We were hoping remission would come after that second dose, but sadly, it has not.
Not Much Change
Hunter still walks around like a drunkard, basically. He walks with his feet out, like a duck to steady himself. Stairs are still a challenge. Mornings and after naps are still filled with uncertainty as to how he will be. He is more tremulous during those times and when he is doing something that has focused movements with his hands (i.e., holding a fork/spoon, pencil, coloring, etc.).
He is still highly emotional. I know that he is 3, but it is almost like have 100 kids that are 3, at the same time. It is exhausting. He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well. There is not an in-between. His eye is still turned in, and they still twitch….all the time. It is so weird.
We start monthly IVIg treatments next month. Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours. We would like to get a mobility service dog for him. Also, we still need to raise money to redo our downstairs bathroom. This will make it more accommodating to him when/if the need arises for constant use with his walker.
I do not know what the future holds, but I do know the One who holds the future in His mighty hands, and I will choose to trust and obey. Blessings.
This is our journey while Reflecting on the Beginning. On June 6, 2017, was the day my sister had called about her former neighbor saying that the Lord placed my name on her heart and that she was praying for me. Little did I know, this would be the last day my son would walk. Here is more on The Thoughts In My Head.
June 6, 2017; Reflecting on the Beginning
On that day, I had been with my Lady. I knew her family was coming into town and I wanted to give them time together. I took all my kids to my son’s baseball game. It was a hot evening, some storms rolling in but it was something I knew everyone would enjoy. Hunter had not been to a baseball game since we played last summer. He was older now (was 3 in February) and I knew he would enjoy it more. He certainly did enjoy it. Charmed everyone around them and then he ate their popcorn and nachos. He cheered with gusto! He was quite the comic relief for the game, and he loved every minute of it.
Our Life is Turned Upside Down
I had let the earlier conversation leave my mind until the next day….that was the day that the world stopped turning for our family. On June 7, 2017, Hunter was highly emotional, and he seemed to be doing things he shouldn’t and getting in trouble more than usual.
The boys, so kindly, took him to their room and they all played legos while I did some paperwork and caught up on phone calls. I could hear the baby hollering at the boys and, of course, they gave in more times than not. I kept hearing my oldest son saying “stop shaking, you are not in trouble, here take the Lego…stop shaking.”
When the baby would get excited, do something he was not supposed to do, or was getting in trouble, he would shake his arms and legs. I assumed this is what was going on with him. I figured the boys were tired of dealing with him, so I called him to come back into the dining room with me.
He screamed while walking down the hall because he wanted to be with the big boys. He refused to stop crying, screaming, and shaking so I put him in time out on the step. There, he screamed and cried even louder. He continued to shake from head to toe. I told him he needed to stop and that as soon as he did, he could get up. Finally…he quit, and he began playing with some of his toys.
The Nap that Changed Everything
The boys ate lunch, and then the baby went down for a nap. This is how it has been since he moved in with us when he was 21 mths old. He slept till about 4, which is normal. My oldest son went to get him up from his nap and he usually carries him downstairs and sets him in my lap…this day was no different.
We snuggled and talked about him dreaming about his pillow. I hugged him tight and said that he needed to sit on the potty, but first, could he hand me his underwear. It was laying in between me and the potty chair. The potty chair was about 10 steps away. I stood him up, and he began to wobble and stumble, and he eventually fell. It scared him…it scared me…it scared the boys.
And It Begins
One of my other sons noted that the same thing happened yesterday after a nap, but it quickly resolved, and no one thought to tell me. I got up and picked him up, thinking his legs or feet were asleep. We snuggled a bit more, and I rubbed his legs. I stood him up again after about 5 minutes, and he fell over again. He could not stand up. My heart began to race, and I didn’t want to freak out. I had my oldest sit, on the floor, a few steps away from me. I tried to get the baby to walk to him. He couldn’t do it. He could not balance, he could not stand alone, he could not take steps without being assisted.
Heading to the ER Misdiagnosis #1
Immediately, I went to gather my stuff, get a bag ready for him and I called Big Daddy. I said he needed to meet us at the ER because the baby could not walk. I did not know why, but we needed to figure out what was going on. While on my way there, I called my oldest sister (the baby’s grandmother) and had her meet us there, as well.
As we were driving the 30 minutes to the hospital, the baby kept saying that his legs would not stop shaking. It was scaring him and me. We got to the hospital, and they did a CT scan of his brain, which turned out normal. They drew blood…WITHOUT GLOVES….mind you. The doctor was throwing around words like Muscular Dystrophy and Cerebral Palsy. He then settled on Strep (though he tested negative)..gave us Amoxicillin and sent us on our way.
We left that hospital knowing our baby was struggling with walking.
I made calls on the 30-minute drive home. I called a friend whose daughter had a freak illness and ended up paralyzed when she was a little girl. She has contacts, and she is not afraid to use them. Also, she is a pit bull….this is why I like her. Thankfully, she made some calls, talked to her daughter’s neuro people, and arranged for a brilliant doctor to hear our story. I also called another friend who is now working in the neuro world. I gave her what all was going on, and they both said…get that baby to Vandy. Do not let the grass grow under your feet.
Heading to Another ER
We got home, made arrangements for our other children, packed bags, and we drove 2 1/2 hours to Nashville to head to the Vanderbilt’s Children’s Hospital. Once we were there, we were briefly admitted (we had gotten there in the middle of the night). They wanted to do an MRI on him, and no one would be there till morning, so we stayed.
They ran some routine blood tests, did his MRI, and I asked for them to do a spinal tap or an MRI of his spine, and they declined to say that it was not necessary. As we were there, the baby began to exhibit other strange behaviors. He would stiffen out his leg when he walked, almost like a toy soldier. He was shaking all over and could not sit up unassisted.
The MRI revealed nothing, so the doctor just diagnosed him with Acute Cerebellitis Ataxia. Nothing more, nothing less. It was brought on by a virus, though he had not been sick. We were told that he was sick, at some point, and we simply did not realize it. We. Did. Not. Realize. He. Was. Sick. He is 3….a blind deaf-mute knows when a 3 yr old is sick. We were to come back if there was a grand mal seizure or fear of death.
When we were discharged…though his tremors were getting worse and he still could not walk…what sticks out in my mind is the flippant way we were treated by the doctor and how my requests were dismissed. Also, what stands out is the stellar nurses we had. Our nurse kept telling us that we did not have to leave if we did not want to. That she could not believe that we were being discharged considering the state of our child.
I knew, had we stayed, we would not have gotten good care because we were going against what the doctors already had said. We thanked our nurse and assured her we were not done searching. He was a healthy little boy one day prior, and now he could not walk or stop shaking. Something was wrong.
Heading to Another ER Misdiagnosis #3
We head back home. I still did not feel settled in my soul. After more phone calls and reaching out to people I know in the medical field…the baby and I headed to Louisville, which is about 3 1/2 hours away. My goal was to get two doctors that stated the same thing. If these doctors stated that he had Acute Cerebellitis Ataxia, then I would accept the diagnosis and wait. Big Daddy stayed home because I did not feel he needed to come. I was hoping that all doctors would be on the same page.
Reflecting on my Facebook Posts from the Beginning
Reflecting on my Facebook Posts from the Beginning of our journey. I mean, not all of them, but the ones that pertain to Hunter and our journey. Boy, these are painful to reread.
Guys…needing prayers. Yesterday afternoon, Hunter (3) began shaking and was unable to walk. We went to Lourdes and they gave him antibiotics for zero reasons and sent us home. Luckily, I have friends that are very wise. We were told to take him to the ER in Vandy. We finally got here around 1:30 and at about 5:30 we got a room (7304). Please pray that we can find the reason he cannot walk and why he shakes uncontrollably. Also…I am not able to be with my Lady and she is having a procedure done this morning. Please pray we find answers. I am not sure how much more I can spread myself. Please add Hunter and my Lady to any and all prayer chains and churches. Thank you.
UPDATE: We are home BUT we are leaving again in the morning. One of his tests came back which indicates inflammation in his brain. We will be home for 5 days and he will be on high doses of steroids. Please pray that we find the answers. Also for my family left at home. I can see all my babies tonight but it is so hard to be away from them.
Got to see my kids, husband, mama and daddy, my Lady, and a couple of friends. Also got to shower, pet my dogs and eat with most of my family. Now…back to Lville for a sucky 5 days of heavy steroids Still no dx. Sigh….holding onto the Rope. Pray for safe travels, easy placement of IV, my crew at home, and for this time to pass quickly.
Waiting on dr #572 to come in this morning. Getting ready for round 3 of heavy steroids. Good times had by all.
Steroids suck on a kid but good on the infection.
Baby is …. wowzer …. emotional.
No walking alone today.
His speech is beginning to be impaired….so there is that.
We are shooting to come home Monday if all goes well.
My baby took 10 unassisted steps tonight!!!!!!!!!!!! Yes, Richie Clendenen, this was worth putting in color!
Please pray for my baby….he is not doing too well after his IVIG infusion yesterday. Extremely symptomatic and throwing up.
My boy is in a lot of pain…prayers for an easy night would be welcomed. Thanks.
V and I had to swaddle Hunter while I pulled his stitches out. He was so brave and then Noah walked in the room to watch.
H: Noah…..go away.
N: But I wanna watch.
H: No Noah….go downstairs, you do not need to see this.
Noah left the room.
Me: Kim can you keep Hunter overnight Monday night?
Kim: Sure what’s up?
Me: I just found out I have to take him to Louisville on Tuesday for his IVIG treatment and I need you to keep him.
Kim: Ok….but isn’t he the reason you are going to Lville?
**Pause of realization**
Me: Well crap…..forgot he was going.
Morning of champions.
Heard the words “Hunter is medically fragile” today by our pediatric neuro nurse……made me vomit in my mouth a little. Those words should not be in the same sentence. Sigh……
Brother calls for a bathroom renovation idea and I cry because it has been hard today…..like an ugly cry where he couldn’t understand me. He was encouraging and led me to Jesus instead of letting me wallow. He said God knew he needed to call me tonight. Wow. Another part of my rainbow. Thank you, brother. I love you.
I lied. He is still up at almost 130 am. He has been in bed since 845 and he is still wide awake. I am about to lose my cool. OMS………I believe I hate you.
Sometimes reality sucks…..but then….there is Jesus. Pray for us as we attempt to head home. Safe travels and no vomiting would be nice.
Please say a prayer as Hunter and I head off to Louisville in the morning for a couple of days. Tomorrow is IVIG day and Tuesday is chemo. We will also be retested to check to see if he has any cancer markers and redoing a lot of bloodwork. It’s gonna be a tough couple of days for him. Thanks 🙂
He. Has. Been. Up. Since. 4 am. God gives us both strength.
Home…..Bart and Ben rescued us. Victoria cooled my jets. Alyssa shoveled the sidewalk, finished and put away laundry, cooked supper, and got my diffuser going, Noah shoveled the apron so we could get in the garage, Gigi cleared out the van, Daniel did his chores, and Jude….well, he is just cute. Jay texted to check on us and pray for us. So thankful for my husband, my kids, my family, and my prayer warriors.
Guess who was granted a wish from Make a Wish???????? So excited. Something fun for a change. Thank you Jesus 🙂 He knew we needed that.
One had their truck almost die.
One was told she possibly overdosed her son.
One picked up wedding invitations.
One applied for graduation from WKCTC.
One asked to see her birth mom for her birthday.
One humbled himself to help a friend in a crisis.
One listened to 4 chapters of the Civil War and remembered it.
One popped on his hearing aid like a beast.
One has had a rough day with walking/talking/eating.
Friends, Neighbors, Countrymen….lend me your eyes. I’m here to announce Hunter DOES NOT have Friedrich’s Ataxia (1000x worse than Opsoclonus Myoclonus Syndrome) and as of now, he DOES NOT have Neuroblastoma. Thank you, Jesus!
‘Roid rage……it is alive and well today, in my house. Does anyone want an almost 4 yr old for a while? He’ll be sitting by the mailbox waiting for pickup.
Well….that was like jumping naked into a nest of iridescent baby ticks.
“Did you even know that you were looking at a miracle?”
That statement was said to me, at the chiropractor’s office. In the midst of my self-imposed chaos, that statement made its way from a gentleman’s mouth to my ears.
I just sat there, with my mouth open and tears flowing.
Not exactly how I had planned my Tuesday more chiropractic session.
CHAOS stands for “Can’t have anyone over syndrome.” That was my Tuesday morning. I could not remember who I was supposed to bring to the chiro, so I just brought everyone.
It just seems to be easier all the way around, somedays, and today was a someday for me. As we all filter in, we are easily identified and signed in without me having to do anything. Hunter knows the ropes and he has all the ladies there swooning, so he did his whole “hello? excuse me? lady?” bit and Whitney comes around the corner and swoops him up.
She. Is. Whipped.
Before she took him back to do his “office work,” she asked if she could introduce him to the lady behind me. That lady happened to be Ms. Whitney’s mom. However, Hunter is always so syrupy sweet when he meets people. Amazingly, this time was no different.
Then there was the man
The office is small and it is shared with another doctor. My kids took up one whole little section, so I went to the other side and I sat by a couple…I would say in their late 60s or early 70s.
I was sitting next to his wife and he leaned around her and looked at me, with this piercing look. He smiled and said, “did you know that boy of yours is a walking miracle?”
I smiled, choking back tears, and I said, “as a matter of fact, I do.” He asked me his name. I told him. He smiled and said that from that moment on, he would pray for my son.
He knew NOTHING about us, our situation, Hunter’s health. Heck, we carried him in and Whitney took him, so the man never saw Hunter even stand/walk. I told him a 30-second version of our story.
Tears filled his eyes and he said, “well, I thought he was a miracle before…now I know he is. God spoke to me about him. Did you know that God is still a miracle maker and He is alive and well surrounding us?”
I replied with “YES!”
And So It Goes
We chatted for a few minutes before I went up to the desk. Hunter has spied food and he wanted it, but he could not have it because of the gluten.
While I was soothing his soul, I overheard this man talking to Daniel. Daniel’s behavior has not been very good, lately. There is a lot going on with him emotionally and spiritually. It has been a battlefield.
This man was sharing the gospel and asking Daniel pointed questions about his faith and his walk with Jesus. I just stood there and allowed it to happen. This man was so filled with the Spirit and he so wanted to share that feeling. You could see it in his eyes.
I don’t know this man’s name. I do not know where he lives or which doctor he was even seeing. The Lord knew I needed this moment to quiet my C.H.A.O.S. on that day. He knew my heart needed to hear that a miracle IS coming for Hunter.
The gratitude I feel is overwhelming. God is good. All the time and all the time, God is good.