Two down, One to go!

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

NORMAL BRAIN

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.

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.

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.

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.

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!

We push for Natalie

We celebrated Natalie's 4th Birthday a day early! We went to Chuck E Cheese and played, ate mediocre pizza, and spent a ridiculous number of tokens. All the while the anticipation of the MRI ahead looming.

With an 11 am arrival time was a challenge due to the fact that Natalie would have to be NPO 6 hours prior. Since I didn't think she would take kindly to a 5 am breakfast I opted for plan B...keep her up ridiculously late with the hope she would sleep late. Plan B worked like a charm. We woke her up at 0930 and left the house at 10 with no request for food or drink. With her brand new Nintendo DS in hand and a ball of nerves in my stomach we headed down I29 toward the test we have long awaited.

Natalie was not keen on any part of the trip to the hospital. After 10mg oral Versed she loosened up and the Anesthesia crew was able to wheel her back into the MRI room to sedate her further. Approximately (and probably much later) one hour later they reemerge with our very groggy little girl rolling down the halls like a tiny china doll in over-side bed. All the while my heart has been aching for the results.

Shortly after they drop us off in the Post Anesthesia waiting room a nurse reemerges requesting Natalie's parents. We barely made it though the large double doors and can hear the whimpering of a scared and delirious Natalie. They call this "Cevo Delirium". Cevo is the gas they use to help get children sleepy prior to deep sedation and this can cause a type of hysteria when they re-awake...good to know. I scoop her up and rock her on the side of the bed, the crying slowly subsides. Within a few minutes we are cleared to go and are back in our car anticipating a long wait before we hear results.

Around 6:30 pm while sitting down to dinner with the family I get a phone call. It's the Dr. The results from the MRI I back, and aren't as promising as we had all been praying for. Natalie has a cyst/lesion on her spinal cord from level T5-T9 (approximately the level of her shoulder blades), she has a mass on the outside of her spine (the mass I had originally found), a cyst in her kidney, and a cyst/lymph node in her pelvis. In case that was all overwhelming to you don't feel bad it was to the pediatrician also. The spinal lesion was well above the original area of interest, the image of the lump on her spine was inconclusive, and then there were additional incidental findings elsewhere.

While I had been praying/hoping/and begging for benign results, my heart sank with the findings. The pediatrician recommends and MRI of the brain and CT of the abdomen and pelvis. The finding were reported after 6pm and therefore tonight the plan of action is limited to waiting. So we wait.

In the mean time I take the report to a family friend who is an MD that can help interpret the results. After breaking down the report and grasping the gravity of what is happening inside Natalie's tiny spine it appears as though she will be needing a Neurosurgeon.

Tomorrow we push. We push to get her in with the best Pediatric Neurosurgeon we can, we push for additional tests, we push for answers. We push for Natalie.

Excuse me while I take a more serious tone for a moment:

For those of you who do not know already we are in the middle of quite a health scare with Natalie. It all started about 3 weeks ago when I found a quarter sized lump on Natalie's spine when she was getting dressed. I immediately called the Dr. and took her to her pediatrician. This pediatrician ran simple blood work and said he didn't want to see her back for three weeks in order to rule out any possibility of trauma causing swelling. Going with my motherly instinct I called and got her in with a KU pediatrician for a second opinion.

While at the KU pediatrician I reviewed the series of events that have transpired over the last year: March '09 lumps were found on Natalie's head, Natalie's abdomen has been unusually distended for at least the last year, recent developement of the lump on the spine. Dr. Rozina, the newly hired, KU pediatrician immediately ordered an abdominal ultrasound, and MRI of the spine.

0800: Friday June 25th Natalie had her abdominal ultrasound in an attempt to get to the bottom of her chronic abdominal distention.

0530: Friday evening Dr. Rozina calls with results. "Liver enlargement, bilateral kidney enlargement, and spleen is the upper side of norma. Could indicated lymphoma or leukemia." They have made us an appointment with Pediatric Hematology Oncology Monday. In addition to the our appointment at the Cancer Center we had a 0800 appointment for an MRI and additional blood work and urine testing.

My greatest fear was just confirmed. All of these unrelated symptoms could be a sign of every parents worst nightmare. After 5 minutes of shock I gathered myself enough to call my husband and give him the bad news. (Chris was still in Wisconsin with his Reserve unit completing 3 weeks of annual training.)

Fast forward through the most grueling weekend any parent can imagine.

Monday morning: After 2 mg Valium and waking up at 0600 Natalie is wide awake and not having any part of the MRI. MRI mission aborted and we head upstairs to the lab for blood work and leaving a urine sample.

Monday noon: Lunch with my newly married brother and his wife to re-center before our long anticipated appointment at the cancer center.

Monday 0100: Cancer center appoinment with Dr. Kumar. We are reassured that Natalie's blood work is negative for signs of lymphoma or leukemia, she does not have palpable lymph nodes besides the one on her head, she is not displaying classic signs or symptoms of lymphoma or leukemia and the initial plan for a Tuesday morning bone marrow biopsy will be canceled. Dr. Kumar wants a MRI with deep sedation in order to diagnose the lump on Natalie's spine and check for enlarged lymph nodes in her mediastinum, the area behind her breast bone.

Unfortunately the first available appoitment for an MRI with deep sedation is July 7th, our little girls 4th birthday...I guess we will take it. In the mean time we try to live our life as normal and be thankful for all the signs of health that she displays everyday. We are hoping to hear results about this MRI by evening of the 7th. In attempt to streamline the information update I will be posting an update. Look for the update here!