Thursday, August 26, 2010

A Mother's life...

The life of a mom is never considered a glamorous one. It is something that most girls begin fantasizing about at a very young age. They run around with their dolls in their miniature strollers with itsy-bitsyb ottles pretending their babies are crying. The part they seem to neglect to portray is the unwashed hair, the bags under the eyes, and the piles of laundry that have become a barrier between themselves and the outside world. No, these young little girls play the role of mom dressed in their princess costumes with lip gloss and heels on. They do seem to have down one realistic portion of this character, the cell phone. Only they never pretend to be getting calls from Dr.s with bad news, insurance companies denying claims, or getting calls from friends offering a shoulder to cry on. When you are this young you imagine only the fairytale. When you are my age you realize the fairytale is a farce and come to realize the reality of motherhood.

As Natalie's surgery approaches I am being consumed with emotions. Well one emotion really, stress. I could have never imagined as a 4 year-old that there would one day be things that could happen to my tiny little doll baby that I could not fix. Hell we could drop those babies on their heads, throw them from a balcony, or leave them in the car for days and mend it all with a simple kiss on the head. 21 years later you realize life is more fragile than your Cabbage Patch doll. Some ailments require trips across two states and highly specialized surgeons to mend. Realizing how delicate a mother's job truly is only makes me take it more seriously and value it that much more.

Even with all the stress, anxiety and exhaustion in my life I would not trade it for anything. My time of pretending to be a mom is buried away deep in the past and my reality has arrived. My reality is that I have a 4 year-old daughter with a spinal cord cyst that will be undergoing surgery in one week. My role is no longer a princess mother pushing a stroller around a basement playroom, but rather to be a personal bodyguard, caretaker, comforter, and a Mother. Now at the age of 25 I have learned what is really means to be a mother, sweat pants and all!

Tuesday, August 3, 2010

Deep in the heart or (East) Texas...

The anxiety has been building for weeks, arrangements took a week to make, and the drive itself took 11 hours. The Dallas skyline was like an oasis in a dessert of medical mystery and fear. Answers were near and and an end in sight.

Our long awaited journey to Dallas was kicked of with some pancakes from McDonald's at 07:00 am Sunday morning. Our little patient sat in the back of the car in innocent silence hour after hour. Never complaining, requesting to drive through for lunch. Approximate 6 hours into our steamy drive Natalie was beginning to sense the something was up. The questions started leaking out; "are Nathan and Noah going to meet us there?" "what are we going to do there?" "how long are we going to be there?" We had to be honest with her about our intentions, and she took it like a champ.

Sunday evening we arrived in Longview, TX at my Aunt Roxanne and Uncle Ray's house. We were welcomed with open arms and delicious fajitas. We swam at their beautiful neighborhood pool and let Natalie stretch her little lets in the water. Perhaps this is why she requested no stopping at lunch, she had a pool to swim in!

Monday morning we were once again greeted with a breakfast spread prepared by our incredibly kind hosts. We then headed to small Zoo in Tyler. Natalie enjoyed the bird sanctuary where she got to feed birds. Then back to the house for some more swimming, and off to dinner at one of the best barbecue establishments I have ever visited.

Tuesday morning Natalie was sad to leave Longview. She didn't want to see more doctors, go sit through anymore appointments, and most importantly she just wanted to go home! We said our good-byes and headed down the highway back toward the medical oasis.

1:24 The nurse calls us back. She sets us in Dr. Sklars office and we sit...waiting. My mind racing. I'm desperate to hold on to all the details of her experience to recount them accurately when asked. I rack my brain for dates of onset, tests, appointments, even birth dates are not coming easily. Finally the man we've been waiting to see. His friendly smile puts me at ease. I relive the nightmare for him as previously rehearsed. He then guides us into a dark room. As most probably do, i get uncomfortable following strangers into dark rooms. Only I fear different outcomes than the average Joe. He shows us the familiar pictures of our daughters spine. The variation in greys sets off alarms to this trainer professional. After a careful and thorough explanation of why a cyst in the spinal cord might occur he tells us "there's no explanation for this cyst". The anxious mother in my can't take it anymore and the words jumped from my mouth like grease from a hot pan, burning my own ears when the landed. "What's the treatment, what do we do?" He says it "Surgery."

Surgery! No one willingly signs their child up for surgery, let alone SPINAL CORD SURGERY! He explains that this cyst has expanded her spinal cord to almost double it's normal size. She is in harms way if no action is taken and could be in harms way with surgery. Either way Dr. Sklar emphasizes this is not something to watch. No, "Sit and wait" has been permanently canceled from the smiley fall line-up. The conversation then shifts to experience, location, technique and approach. They will remove the back piece of one of Natalie's vertebrae, use a microscope to make a 1mm incision in her spinal cord and insert a small stint, developed by this surgeon, to allow the fluid to drain freely from inside the spinal cord to the area around the spinal cord. This will essentially prevent pressure build up inside the cord and therefore prevent pressure on nerves and keep Natalie functioning normally.

As we walked out of the office our hearts are heavy with fear and stress. Natalie skips along side us singing "I'll take you for a ride on my big green tractor" and completely naive to what lies in her future. For the moment we wait for a confirmation on surgery dates. It will most likely be within the first two weeks of September and require a week long stay in Dallas. Chris and I each take turns on the phone calling family, work, and friends anxiously awaiting to hear our news.

While this news is not the best, it is far from the worst. We have so much to be grateful for. God laid all the pieces out for us and when put together they leave a Natalie in a picture of health and the best medical team around her. We will forever be grateful for that.

Wednesday, July 28, 2010

Two down, One to go!

The results of the "High Resolution MRI" are in...drum roll please...


NO Spinal tumor

This news rules out the biggest risks. She DOES still have a cyst that will need to be addressed and still require a highly anticipated journey to Dallas Children's to determine course of treatment/need for surgery.

We are now a month and a half into this terrifying journey and have successfully scanned this little girl top to bottom. We have ruled out cancer, brain tumor, spinal cord tumor. Three of the most terrifying diagnosis!

Prayer is priceless and I feel so lucky to have so many people praying for our little girl! Thanks again to all my amazing supporters.

Sunday, July 25, 2010

Dallas Bound

I was recently blessed with a rare opportunity. I was able to sit down with my brother-in-law's uncle, who is a Neuro Radiologist/ Interventionalist, and review Natalie's scan. He read her scan with me and pointed out multiple items of concern, but prefaced our conversation with "I don't specialize in kids". He looked at me with sad eyes and tried to emotionally prepare me for the road ahead. This Dr. took over and hour out of his visit to Kansas City to talk to a distraught mother and get involved in this emotional situation that he was in no way obligated to. He thought the area on her spinal cord looked like a tumor and it was certainly not something to be watched. We discussed surgical approaches, road for recovery, and most importantly options in Dallas. See it just so happen that this Dr. Purdy is engaged to be married to a very prestigious Pediatric Neuroradiologist at Dallas Children's Hospital. He recommends multiple opinions, lost of research and fast action. He offers his resources of speaking with his fiancee, Dr. Rollins, and giving her the MRI to review. After an hour of hanging on his every word and his kind words of guidance I drove home with tears in my eyes and fear in my heart for my little girl. Dr. Purdy said something that sticks in my mind like gum to a shoe "If this were my child I would take her to Dr. Sklar in Dallas. She needs someone who KNOWS what they are doing. She needs the BEST."

The next morning I receive an urgent phone call from my sister. "Sister, Nancy (Dr. Rollins) wants you to call her NOW, she doesn't think it's a tumor!" Que the symphony of angels! I quickly dial the phone and hear a calm and reassuring voice on the other end. "This doesn't look like a tumor. We will still need the high resolution scan to be sure, but she may not need surgery." Regardless of tumor or cyst Nancy wants Natalie to come to Dallas for a second opinion with Dr. Sklar. She has already spoken with him regarding her case and she is willing to help in anyway possible.

During both conversations with these incredibly kind doctors I felt blessed. I had experts in a very specialized area at my fingertips to answer questions and listen to my story. I was overwhelmed with feelings of gratitude for their time and attention for my daughter.

Sunday August 1st Chris and I will make the long trek to Dallas with our little girl to get her THE expert we were told of. Tomorrow little Natalie will have her long anticipated High Resolution MRI at Children's Mercy. She will undergo 3 hours of deep sedation and have a complete brain and spine scan. We hope for so many things. We hope this is the key to answers to her mystery diagnosis, we hope to not find any additional lesions/tumors, and I hope to hell when she is 10 she doesn't remember any of this! We hope this will one day be a story to be told to her, and not one that she recalls with vivid detail.

Sunday, July 11, 2010

Twenty-three days...

As time slowly inches along my heart grows increasingly heavy. Heavy with fears for Natalie's future, her health, and all that she will endure.

Fourteen days from now we head back to Children's Mercy for more testing. In twenty-three days we meet again with Dr. Igbase to review the results and plan for treatment. In twenty-three days we will learn Natalie's fate. For twenty-three days we wait. For twenty-three days we worry. We have twenty-three days of peace for Natalie.

July 19th we leave for a long awaited vacation with my sister's family. We will journey up to Indiana where we will stay on Lake Michigan. We will relax on the beach (well the kids will, I will be on lifeguard duty) and venture into Chicago to explore Legoland, the Aquarium, and some other classic Chicago attractions. This time will allow us time to regroup as a family and offer us a much needed distraction. It will offer a much needed brief escape from reality.

Friday, July 9, 2010

Work of an angel...

07:25: My eyes pop open to the highly anticipated sound of my alarm clock. In less than three hours we are going to be at Children's Mercy and on our way to answers. Chris and I get ready for the journey into downtown KC. We wait as long as possible before we wake the sleeping princess. We quietly dress her, feed her, and prep her for even more probing eyes. When Natalie realizes that we are off for yet another Dr. appointment she tries to negotiate her way out of it. "I don't want to go to the Dr., take Noah instead."

10:30: We meet with the Pediatric Neurosurgeon. He asks a stream of simple question regarding symptoms and history. We then make our way into another room to review the images of her MRI. We sit and Dr. Igbase explains that Natalie has a syrinx in her spinal cord (a fluid filled cyst). These are not all that rare but there is something else that has also caught the specialist's attention. Natalie not only has a syrinx in her spinal cord, she has a nodule. A tiny white spot on the screen has sparked his highly trained eye into wanting additional tests. This nodule may need to come out, it will need biopsy, and may indicate an answer- Von Hippel-Lindau Syndrome. This could require testing the boys for the genetic disorder. This road will be crossed once we get an official diagnosis, but for now I prep.

Dr. Igbase wants a high resolution MRI in 2 weeks to assess whether these areas are growing. The MRI will take 3 hours and require another round of deep sedation with an anesthesiologist. If this is in fact a nodule as it appears on the initial MRI it may require surgery to remove. This is very high risk. Loss of physical function and spinal cord trauma being the main concern. If this is the case we will pursue a second opinion to confirm that surgery is the only option, and that she has the latest research, techniques, and most highly trained doctors on her team. I have a good feeling with Dr. Igbase and would prefer to have the surgery in KC, but will pursue all the options before allowing anyone to operate on Natalie's spinal cord.

There was a bit of good news in all of this. Whatever this is we caught it very early. Dr. Igbase emphasized how good it is that we have caught this VERY EARLY. Natalie is not displaying any symptoms of spinal cord compression or deterioration. Unless Natalie starts to show symptoms of spinal cord compression we will continue to try to live our lives as normally as possible...if that's possible.
The initial lump noticed on her spine has turned out to be nothing. Perhaps it was a red flag God gave in order to get Natalie the medical attention she needs in order to remain safe. For that I am grateful. I can't help but feel Natalie has a guardian angel with her keeping her safe and raising concern when necessary.

Thursday, July 8, 2010

Mercy bound...hopefully in more than one way!

After what felt like the longest morning of my life we got a phone call from the Pediatrician. She was still waiting to consult with the Pediatric Oncology Dr we saw the week prior. Rather than waiting around to hear from the Cancer doctor I tell Dr. Rozina after the limited research I was able to do it seems as though Natalie needs a neurosurgeon, preferably and Children's Mercy. She agrees and begins the process of referring us to our next destination on our medical journey.

In the mean time my sister's uncle-in-law (if that's the correct term) who is a Neurosurgeon was kind enough to read the report to help interpret if possible. He agrees she needs and MRI of her brain and to see a Neurosurgeon. Fortunately his fiancee is a Pediatric Neuroradiologist in Dallas and he is willing to arrange a second opinion if we wish to go that route.

2:30pm we get the call- Dr. Rozina has gotten us an appointment with the Pediatric Neurosurgeon at Children's Mercy @ 10:15 am Friday morning. In the mean time I am given the task of gathering her MRI disc from KU to take to the Neurosurgeon.

Thank you to everyone who has sent me notes and positive messages. While I am not able to respond to all of them, please know they mean the world to me and help me get through the long wait. I am so grateful to have so many people praying for our little girl and so many hands eager to help when called upon. Tomorrow we prepare for our journey to Children's Mercy hoping to find the end of this medical scavenger hunt. We pray for answers, plan for treatment, and positive prognosis. We hope to be Mercy bound!