An excellent day! Nina
is D-O-N-E! The doctor said she is cured. He is a neuroblastoma expert
and based on new guidelines and research on her disease, he was able to
declare that her cancer is never coming back. He said no testing was
necessary today or ever. There really are no words for how happy this
makes us. We've waited 8 years for this day. Plus we got to have lunch
at the Chipotle in Nashville (we don't have one in Paducah). What a
wonderful day! A Happy St. Patrick's Day to all!
March 15th, 2016
Since we've moved, Nina's long term cancer care has been transferred to Vanderbilt Children's Hospital in Nashville. It's about a two hour drive from our new home. Her appointment is this Thursday. Praying for another positive report!
July 5th, 2015
We’ve moved to a cool little town called Paducah, KY. Mike was promoted to plant manager at AEP's Cook Coal Terminal in Metropolis, Illinois and our home is just across the Kentucky border. It was a leap of faith moving here since there are no children's' hospitals. It’s been 7 years since Nina’s diagnosis and we are just trusting God.
I have to tell you we will miss Columbus, Ohio!! She was SO good to us. It was an awesome place to raise a family. Here is an essay I wrote about my old neighborhood when I thought we were going to sell our house last year so that Lindsey could go to the same high school as her friends. It was so hard to leave!
Mister Rogers Would be Pleased
Our house should be on the market right now. We’ve staged it with paint, replaced family photos with artwork and added lots of curb appeal with flowers and fresh mulch. We’ve rented a storage unit down the street to accommodate our extra belongings. The house is ready with her shiny red door, but we are not.
We’ve lived on Charleston Ridge Court for twelve years. Our daughter, Lindsey, was a toddler when we moved in and she’s starting high school this fall. Our youngest daughter, Nina, has never lived anywhere else.
Our neighborhood doesn’t offer a homeowner’s association. There’s no perfection here. There’s mostly just good people who take care of their homes and each other too. We are a living breathing cliché of neighbors helping neighbors. We watch each other’s kids and sometimes invite them to stay for supper. People shovel each other’s driveways in the winter and mow their lawns in the spring. There’s never a worry if you have to go out of town. Someone will watch your house, bring in your mail, water your begonias, and even care for your hermit crabs. Warm cookies often arrive on a plate. Margaritas have even been delivered to our door.
When we were house hunting in 2002, we loved that this home sat on a cul-de-sac. It seemed like a good spot to raise a family and it has been. Our kids have had a REAL childhood here. One that could honestly rival and beat the one I had back in the 1980’s. Even with all of today’s technology, our kids still spend hours outside. It’s a street in America where kids still climb trees and jump out of swings. They sell lemonade and catch lightening bugs in jars. Sometimes they lie on the trampoline and watch the clouds form pictures. Squirt guns and water balloons have become a summertime staple. We still have carpools and cookouts, 4th of July parties and gatherings on Christmas Eve and New Years.
Again there is no perfection here. Tragedy has struck, but there has always been love. In 2008, Nina was just four when she was diagnosed with cancer. I remember I couldn’t sleep that first night. When I closed my eyes, I felt like I was sinking and suffocating all at the same time. The next day, I was on the phone with my neighbor, Amy, and she asked how I was doing and I told her about my anxiety. She suggested that maybe a glass of wine would help me sleep better. I told her we didn’t have any and a few minutes later her husband was standing on our front porch with a bottle of moscato. As he handed me the wine, he looked me in the eyes and said, “If there is anything you need, ANYTHING, you just let us know. Nina is going to be okay. She has to be.” With only one glass of wine and those comforting words, I slept that night and never needed another glass throughout that nightmare. We were loved and supported by so many neighbors. They came to the hospital, brought presents and even helped with Lindsey. We were blessed that Nina’s cancer had been confined to the original tumor and before long she was healthy and back to doing cartwheels.
While it isn’t closing time, it is time to list the house. Lindsey’s middle school splits into two different high schools. Her closest friends live on the other side of the boundary line. We promised that we would try to sell the house so that she could go to high school with her friends. We agreed to list if for Sale by Owner and see what happens. Although I’ve taken beautiful photos and created an online listing that’s just waiting to be published, I’m struggling to pull the trigger.
Still, we must keep our promise.
Who knows? Maybe buyers will see imperfection instead of love and we will get to stay. Either way, I have to say thank you to these wonderful people. They are no longer neighbors. They’re family.
January 29, 2014
Today Nina had an ultra sound on her kidneys as a followup on her kidney reflux. She was taking a daily antibiotic, Bacterium, for several years to prevent UTI’s, but now she is just being monitored and no meds. Praise God she hasn’t had any infections. She had to drink lots of water to fill the bladder and she couldn’t use the bathroom until after the test. Can you believe I missed my exit on the way to the hospital? After many many trips to Nationwide Children’s hospital over the years, you would think I could drive it in my sleep. When we finally got to the hospital we were pushing it on time but I couldn’t find a parking spot. Nina was in the backseat just moaning in pain because she had to pee so bad. I finally drove up to valet parking and we literally ran into the hospital. By the time we got to the waiting room, Nina was crying. I felt so bad. If I hadn’t missed the exit we would have gotten there sooner, possibly sparring her from this discomfort. The staff was very nice. They saw her discomfort and got her in as soon as they could.
This is always an emotional test because Nina was having an ultra sound of the kidneys when they discovered her cancer. I was holding my breath today as the technician moved the wand over her abdomen, but nope. There was no tumor incidentally discovered today. Praying for all around good results.
August 29, 2013
Design #2 won! The NC4K RV will be traveling from to New York City to Dallas, TX with lots of cities in between to raise awareness for childhood cancer throughout the month of September. We are honored that Nina gets to represent such as awesome organization like Nellie's Catwalk for Kids.
August 2, 2013
The girls didn't model this year but they had a great night supporting Nellie's Catwalk for Kids from the audience. Check out their silent auction score.. a butterfly canvas made by all of this year's models. As always it was a great event. Pediatric cancer hits close to home so emotions always well up on this night, but it was also upbeat and fun. Well done team!
June 11, 2013
We were tickled this morning to login to Facebook and see Nina's face on the side of the Nellie's Catwalk for Kid's RV. They are asking for votes on designs #1 and #2. I love them both and feel honored that whichever design they decide to go with, Nina will be "traveling" around the country as they do remarkable things to help families dealing with pediatric cancer.
May 16, 2013
Nina was happy to have the day off from school. The doctor said the biopsy went well and we should have the results within a week.
UPDATE: The biopsy came back normal. She was also tested for food allergies and all came back normal. Nina is just going to stay on Protonix and hopefully she will just outgrow her acid reflux.
Still groggy but ready to go home.
May 5, 2013
Nina has had a tiny setback in her health. She had acid reflux really bad as a baby and went on medicine at 6 weeks old. She seemed to outgrow it and it hasn’t bothered her for many years. Then one day she started mentioning, “Mom, I just threw up in my mouth.” This happened a few times here and there then all of the sudden it seemed like it was happening everyday. Her pediatrician put her on medicine. That didn’t work so they referred her to a gastroenterologist at Children’s hospital.I really like this doctor. She told me something very interesting. She said it is very common for kids who had acid reflux as a baby to have a reoccurrence around the ages of 8-10 years old. That was news to me, but made me feel good. She put her on a stronger prescription medicine called Protonix. She said to give it 6-8 weeks and if Nina was no better than to bring her back in. Unfortunately, she has still been having reflux almost daily. The doctor is worried that it could be an enzyme/protein in her esophagus, which is causing an autoimmune disease where the body attacks itself. So Nina is scheduled for a biopsy of her esophagus and stomach on May 16th.
May 18, 2012 It's been a year!
I admit I'm terrible at updating. I can't believe it's been a full year since my last post. Nina's been doing great! With less than two weeks left of school, Nina hasn't missed a single day of second grade. She was at the doctor last week, because her acid reflux has been picking on her again. It was getting to the point that nearly everyday I would hear Nina call out, "Mom, I puked in my mouth again." The doctor put her on Prilosec, and she's already feeling better. She'll be on it for three months, and then we'll see the doctor again in August for a follow up. All in all, if acid reflux is the only thing we have to worry about right now, we'll take it.
Last month, we took Nina for her first visit to the long term survivorship clinic. It was such a long day. We met with a nurse, a social worker, a psychologist, a geneticist, and a new doctor. Oh how we missed Dr. Ranalli, but everyone was nice. My favorite part was when the new doctor looked Nina in the eyes and said, "You are here because we believe your disease is gone forever." Those were the best words we have heard in four years. R-E-L-I-E-F! They still took blood and urine for her labwork, and she had a physical exam. Everything looked normal!
We'll be celebrating soon on another Disney cruise. Are we crazy after what happened last year? I hope not, but I am feeling apprehensive. If there is some freak illness, it usually finds Nina when we're on vacation. Please pray that she stays healthy. No illness for anyone. No bizzare allergy to her Prilosec. No fever, hives, or swelling. This is the do-over trip we talked about after last year's disappointment. We're going on the Disney Magic this year, and hopefully she will magically stay well. Ok enough about that. We are going to have an AMAZING trip. I believe!
The psychologist gave Nina a "Survivor" necklace during her appointment. Nina asked her if it was real gold LOL.
May 6, 2011 So far so good.
I don’t think today could have gone any better. Nina’s surgery was at 10:30 and she was released from the hospital at 12:10. After recovering from a little grogginess and dizziness, Nina is doing great. She has a sore throat, but Tylenol seems to be keeping that in check. Her appetite and energy are normal and she is playing games with Grandma right now. Hopefully this surgery will help to relieve all her sinus issues. Thank you for all the thoughts and prayers.
Nina brought "Pink Tails" into the operating room.
Passing time before surgery
We get to eat all these popsicles and ice cream!!
May 3, 2011Another hurdle
In my heart, I just know that Nina is fine. She’s addicted to the trampoline that Santa brought, even with the weather so nasty lately, she always finds a way to get out there and jump. Her appetite is ridiculous. She loves to eat just like her mom and dad. So maybe that’s why it hasn’t worried me too much that the pediatrician has been so concerned about her, or maybe it’s just the fact that cancer isn’t the issue this time.
We received three calls from Nina’s doctor the week we returned from Florida. Each time, I told him how great she was doing. After starting the steroid and getting a new antibiotic, she was new and improved. By the third call, I could tell that the doctor was still concerned about her, and I finally agreed to bring her in the following Monday (April 18th) for a pneumonia vaccine.
Last Thursday, the doctor called to ask how Nina was doing. I told him that she was doing awesome. The symptoms of her sinus infection were finally gone, and she was looking and feeling great. He said he was calling because he was considering sending Nina to see an Immunologist, but the fact that her sinus infection was gone made him decide to hold off. Since the sinus infection was gone, her immune system must be doing its job. Her doctor said he was going to discuss Nina with some other doctors, and that he would get back with us in a few days. Less than 24 hours after that conversation, Nina’s wet cough reappears out of nowhere, and she has blown through an entire box of tissues. It looks like her sinus infection is back. Maybe there is something going on with her immune system? Anyway, the nurse called yesterday and told me the plan of action. Nina will be getting a second pneumonia vaccine on June 1st, and then 6 weeks later, they will be doing a blood draw to see if she is producing the antibodies that she should if her immune system is working correctly.
We are all so ready for Nina to move on from shots and scans and tests. The girl is busy and she has better things to be doing with her childhood. Thank goodness cancer has not been a concern through all of this, but enough already. Let’s get those adenoids out on Friday. Let the sinus infection die and RIP forever. Let the check on her immune system come back normal, and Nina be done with doctors and hospitals for a while please. Nina’s surgery is in three days. Please pray that she is well enough to have the surgery. Remember they wanted the sinus infection gone before they would operate. Also, pray that Nina does well. Also a quick thank you to each and every person who helped with the Relay for Life Luncheon. We were able to raise over $600 for Team Purple Door. It was a huge success because of YOU. God bless you.
Nina on Saturday all ready for the Father/Daughter Dance.
April 24th Celebrate!
With all the sinus hurdles and allergic reactions, I’ve neglected to mention all the blessings and good taking place in Nina’s life. Last month was her visit with Dr. Ranalli at the Oncology clinic. All of her tests came back good, and we received an official letter in the mail saying that Nina is in three years of remission and that her doctor feels she is ready to be transferred to the “Long Term Survivorship Clinic” at Children’s Hospital. Nina has graduated from the Cancer Clinic! It was the greatest news, definitely a victory for Nina. I once read an article where cancer was described like a game of football where you never truly know if you’ve won the match. The doctor says you’ve been cured, but have you really made it to the end zone? We do not know the future, but for today we celebrate this awesome touchdown. Go Nina!!
We got a call from Urology saying that even though Nina has Reflux, her kidneys look great. They said they would end all the tests and monitoring of the kidneys as long as she is doing well. I only need to contact them if she has another urinary tract infection. Yay! Another one bites the dust.
Cross off cancer clinic, cross off urology, and on May 6th hopefully we can cross off the ENT once she has those adenoids out and her post surgery follow up visit. So we have so much to be thankful for.
We hope you all had a wonderful Easter!
Dying Easter eggs with Grandma
Showing off the bunny cakes that they made with Grandma
Ready for church on Easter Sunday
April 22, 2011 Relay for Life
Mike is enjoying his role as leader of Team Purple Door. We have some dedicated, hard working, individuals on the team. On April 15th and 16th we held a garage sale and made $877 for Grove City Relay for Life.
Lindsey and Nina had a lemonade stand. All money went to Relay.
We had Luminaras for sale.
Our neighbors, Skylar and Laykin, were the first customers at the lemonade stand.
This Sunday at church from 10:30-12:30, we will be holding a luncheon in the café area to raise money for the team. We’ll be serving hotdogs, sloppy joes, shredded chicken, chips, veggies, brownies, and cookies. There will be a jar on the counter for open donations. We hope to see you there.
Some future events include:
· Car wash at Faziolis on Stringtown Road (June 5th)
· A second Garage Sale (Memorial Day Weekend)
· Lia Sophia Jewelry Open House (all proceeds to Team Purple Door)
This year’s Relay for Life event will be held June 17th and 18th at Grove City High School. We could use more members on the team. Please let us know if you are interested in joining email@example.com or firstname.lastname@example.org or if you’d just like to make a donation you can do so by clicking below
Today, Nina was sent for an ultra sound of her kidneys. The ultra sound department is the place where this whole journey started. Remember the tumor was found during an ultra sound of her kidneys in 2008. This was our first visit back to that department. Nina’s urologist wanted to take a look at her kidneys to make sure they haven’t been damaged from the years of Kidney Reflux. I thought it would be an easy hospital day for Nina and an emotional one for me returning to that place. Mike has already taken off several days of work this year for Nina’s other appointments, and he's taking off May 6th for her surgery, so I told him not to sweat this one. We’ be fine.
Nina had to drink 16 ounces of liquid one hour before the test, and then she wasn’t allowed to use the restroom. They wanted her bladder full during the first images. This should have been no problem, but I messed things up. On our way to the hospital, I took the wrong exit and got lost. I have been to this hospital like a hundred times. I could drive there with my eyes closed, right? On this day, Mike needed the van for work, so I was driving his little car. Everything looked different down low. Once I realized I was lost, I went to grab the GPS, but of course, it was in the van. So I wasted a bunch of time driving around downtown Columbus where there were tons of orange barrels and Detour signs. By this time, Nina is in the back seat doing the pee pee dance. When I finally found my way, we made it to the hospital 15 minutes late. Nina’s bladder was ready to explode. What I thought would be an easy visit on her body, turned into torture. She was screaming and crying by the time we parked the car and made our way to the ultra sound department. They got Nina in as fast as they could. When the technician saw Nina’s bladder on the screen, she said it was completely full. Once Nina was allowed to empty her bladder, she was fine. With all the bladder drama and noise Nina was making, I never had a moment to get emotional or sentimental about the room we were in. So it all worked out. God is good! We should hear from the doctor in about two days. Praying for two healthy kidneys.
April 10, 2011 Back from our cruise!
The only bad thing about the cruise was that it was too short. The ship was beautiful! Service was amazing! The weather was perfect! The kid’s clubs were outstanding. The entertainment was first class and totally Disney. Characters could be found all over the ship. The food was good with lots of variety. Mike and I enjoyed many cocktails and drinks of the day. Disney’s island was paradise, especially the adults only beach “Serenity Bay.” We loved the cruise, and we’d like to do a 7 night one day. With all that said, this was a very rough trip, and I would love to have a do-over.
It all started on Saturday as soon as we arrived in Florida. We hadn’t even gotten on the ship yet. We were going to spend the night at a hotel in Cocoa Beach because it would only be a short drive to the port on Sunday morning. When we pulled into the parking lot of our hotel, Nina took off her seat belt, turned around to show us her back. She lifted up her shirt and asked, “Did something bite me?’ Her back had lots of bumps on it, and my first thought was “Bed Bugs!” We had stayed at a hotel in South Carolina on the drive down. I had removed the bed coverings to check for bugs before we settled in, had I missed something? Mike told me not to freak out. We decided to check into our room and then we’d take a closer look at Nina.
When we removed Nina’s clothing, I was relieved to see that it wasn’t bed bugs at all. She had hives. Both Mike and Lindsey are allergic to penicillin, so we called the pediatrician and he told us that the antibiotic Nina was on for her sinus infection contained Penicillin and that she was likely allergic to it too. We had to stop it immediately. We did, and we went to a drugstore and got her some Benedryl. Then we were off to Cocoa Beach to have some fun in the sun.
The hives made Nina itchy and irritable, by Sunday night (first night on the ship) her hands and feet started to swell so badly that she couldn’t bend her fingers or toes and she was running a fever with chills. It was the first night and Lindsey went to the kids club without Nina. Nina lay in bed crying, “Why am I having such a rough life? It’s really not fair.” She usually takes it all in stride, but missing the first night in the kids club was too much.
We decided to take her to the ship’s doctor as soon as they opened on Monday morning. Since I’m allergic to Benedryl, the doctor thought that Nina might be having a reaction to it too. They took her off that and put her on a weird drug called Phenergan. The doctor said it should help with the hives and swelling, but that it was used as a sedative and would make Nina extremely sleepy.
We gave her this drug for two days and somehow she fought through the tiredness, and continued with activites. She would be a little better during the day, but nights were the worse. Her hives were gone, but Nina was in so much pain in her ankles and wrists. We kept her on IB Profin and Tylenol alternating them around the clock, but we stopped the phenergan. Nina could barely walk, so we would reach out to take her hand to help her and she’d scream bloody murder and cry because her wrists were inflamed and swollen. It was awful!
Thursday we got off the ship and headed to the Nick Hotel. Nina was so uncomfortable at this point, that she could no longer pull down her pants to use the restroom. She was like a little old lady. She had to be helped on and off the toilet. We were sitting in the food court waiting for Mike to bring the food, playing I Spy, and when she went to point at something, she used her whole fist, because her hands could barely open. It was the saddest thing ever. We called the pediatrician. He said to go buy Nina some Zyrtec and to take her to hospital if she wasn’t better on Friday. By that night, we had to go buy an umbrella stroller to help get her around. We went to the Slime Time Live show that night. When the whole audience got up to dance, Nina had to stay parked and it broke my heart. She is a Nick fanatic. She was the reason we chose to come there, and she wasn’t able to enjoy herself. We went back to the room and she wanted to play with a toy on the floor. I had to help her down slowly like an old person. She almost looked crippled.
That night, I cried myself to sleep. I thought for sure Nina had JRA (Juvenile Rheumatoid Arthritis). I know, I shouldn’t have looked on the internet, because I only scared myself. I wondered if my active, busy, child was ever going to be herself again. She was no better on Friday morning, so we went straight to Arnold Palmer Children’s Hospital in Orlando. They brought Nina a wheelchair as soon as they saw her. We stayed there 7 hours getting tests done. At this point, Lindsey is in tears because she was missing out on all the things we had planned at the Nick Hotel. We were all miserable waiting. They did rule out JRA and several other things and concluded that this was caused by the penicillin allergy. I was so relieved! They said most people would have gotten better much faster but because Nina only has one adrenal gland, her reaction was prolonged. They put her on a steroid, and she was a new child after only one dose. For the first time, Nina was finally herself. Then it was time to drive home. We are so glad that Nina is doing better, but man, do I want a do over.
Her swollen feet were black and blue
Wishing she felt better
Enjoying the pool
March 28, 2011 Great news!
I'll keep this brief. I just got home and there was a message on the answering machine from the pediatrician's office. The nurse said that all of Nina's labwork had come back normal. We were feeling optimistic after meeting with the ENT, but it's a huge relief to get the offical results. Thanks again!
March 24, 2011
We just got back from Children’s. I’m feeling a lot better about things. Nina had her “Cadillac” of blood tests today taken to test for things like cystic fibrosis and immunodeficiency diseases. While we were there, an ENT agreed to see Nina because Dr. Kebe said it was an emergency. His name was Dr.Kang (prounouced Kong, like King Kong). We’ve been wanting to get Nina in to an ENT, but we couldn't get her an appointment until April 13th, so this was a definite blessing.
Anyway, he checked Nina and reviewed the CT of her sinuses and he said the infection was so bad that no antibiotic would be able to clear it up on a 10-14 day regimen (like she’s been getting). He said she was so blocked that the antibiotic might not be able to reach the infection in such a short amount of time. She would need at least 21 days straight. And then he saw her adenoids on the CT and said they were so big, that there was no room for anything to drain out. He said they were probably trapping some of the infection. So these all sound like good reasons for her inability to heal and hopefully the blood work will come back ok.
This doctor is wonderful. He's going to take out Nina’s adenoids on May 6th. He said she has to heal from the infection before surgery (b/c the infection could cause complications). So she’s starting on a three week regimen of Augmentin. We're leaving for a Disney Cruise soon. It won’t be fun on the ship dealing with antibiotics, nasal washes, Nasonex, and probiotics to ward off C-Diff, but after the scare yesterday, we’ll be so glad if this is all that’s wrong with her. We can deal with this.
I'll post something when the rest of the test results come in. Thanks again for your prayers and support. When people start praying for you, you start to see more clearly and somehow things don't seem so bad. Please let us know if you need prayer. We would love to do the same for you.
March 23, 2011 My first post of the new year
Nina's been fighting the same sinus infection since December. Five antibiotics and the infection has persisted. Well yesterday, the pediatrician became very concerned when he saw that she still has her infection. He got on the phone and started consulting with all these other doctors. He seemed really shaken up. Anyway, they think something is wrong with Nina’s immune system, and she is being sent for all these blood tests tomorrow. I am nervous. I am scared. So if you could send some prayers our way, they’d be greatly appreciated.
December 7, 2010 Feeling nauseous today :-(
Any time I hear of a child dying from cancer, it makes me feel completely nauseous. Back in March, I requested prayers for a 7 year-old in our town that was battling a brain tumor, sadly little Violet Baier passed away this morning. If you pray, please ask God to lift this family up through their unimaginable grieving. http://www.caringbridge.org/visit/violetmariahbaier
The American Cancer Society’s official campaign is More Birthdays. Nina turned seven on Saturday, and we celebrated her birthday at Chuck E Cheese’s. Mike and I went to pick up Nina’s cake that morning while the girls stayed home with grandma. I got so emotional in the car. I was giving Mike an update on Violet’s grave condition and in contrast thinking about how blessed we are that our “baby” was celebrating another birthday. The overwhelming feelings of gratitude, brought me to tears. Thank you God for the kidney trouble that led to Nina’s early diagnosis. Thank you for giving Nina three more birthdays since cancer came into our lives. Nina celebrates life every day like it's a gift.
Last year was our first year participating in Relay for Life. It was a great experience, and we truly appreciate all the financial support that many of you contributed to the American Cancer Society. Mike has agreed to be the new leader for this year’s Relay team. I know he will do a great, and our family has wanted to give back, so we all very excited. Please consider joining our team. Maybe we can all help other families watch their loved ones enjoy more birthdays too.
August 3, 2010 It's the trip that keeps on giving....
We got a call from Nina’s doctor today and learned that her labs came back positive for C. Diff. I’m actually relieved to know what Nina has, and I’m so happy that it has nothing to do with cancer, but apparently this C. Diff is no fun either. It happens when an antibiotic kills all the happy bacteria in your intestines and the bad bacteria take over and produce toxins that try to destroy the colon. Ironically, it’s treated with an antibiotic. C. Diff is sort of like a “superbug” meaning it’s resistant to most types of antibiotics, it is sometimes difficult to treat, and relapse is common. Nina has to take this yucky medicine four times a day. Her doctor warned me about how nasty it tastes, so I’m giving Nina a Hershey’s Kiss chaser after every dose.
You may have heard about the rough trip we had to Virginia Beach last month. Mike was diagnosed with Shingles on the first day of our trip, and he was confined to the hotel room for several days. Then, Nina was diagnosed with Strep Throat and Tonsillitis. She had a high fever, and she hurt from her teeth to her big toe. At times, she was too weak to even walk. Mike had to carry her out of urgent care wrapped in a blanket. We missed visits with so many family members. We didn’t get to do our annual tradition of riding the horses on my mom and step father’s ranch. I am glad that we got to see the people we saw and do that things that we did when we were able to do them, but overall it was a disappointing trip. Not only did we get a speeding ticket as a $139 souvenir on the way home, but now Nina is dealing with a tough illness thanks to the antibiotics that she received for her strep throat in Virginia. Mike and I just laughed and shook our heads tonight. It’s the trip that just keeps on giving.
On a happier note, Nina is going to be modeling in a fashion show with "Nellie's Catwalk 4 Kids." It's a fundraising event and all the proceeds go to help pedicatic cancer. The show is this Friday at 7pm at the Aladdin Shrine Center
August 2, 2010 Would it be wrong to pray for a parasite?
Nina had several tests today, and even though we don’t know most of the results yet, it just feels good knowing that something is being done. Did you know that strep throat can travel to your butt? I had no idea! You know how they stick that long cotton suave down the back of your throat to see if you have strep? Well, just use your imagination with what they do when checking for it on the other end. Poor Nina sure knows! The culture came back negative, so we can rule out strep butt :-)
Since Nina’s blood work came back in the normal range and didn’t reveal any inflammation, it’s unlikely that we’re dealing with Crohn’s disease, but her doctor is not ready to rule that out, because it runs in our family. He’s checking for other things first. He wanted some stool samples. Of course, Nina was able to make a donation while we were there, but we had to return to the office after lunch to provide an additional sample, again no challenge for Nina these days. They’re checking for five different bacteria (Salmonella, E. Coli, etc.) and several parasites. They’re also checking for something called C. Difficle, which can occur after taking an antibiotic (Nina was on one late June/early July for strep throat).
Then they sent us to a Children’s Hospital’s satellite lab location to collect a urine specimen. They’re checking hormone levels in her urine. This is one of Nina’s tumor markers. The tumor can cause an increase in these hormones, which usually leads to diarrhea and watery stools. It takes a week to get the results back on this test. Of course, deep down this is my biggest fear, but I do trust God, and I know he will see us through. At this point, I’m hoping this mess is being caused by a parasite, or bacteria, or something short term. Crohn’s disease or inflammatory bowel disease would create a lifelong struggle, but that would surely be better than Cancer. Again, whatever it is, we just need the proper diagnosis.
Thank you so much for your support, and we appreciate every little Nina prayer. I'll keep this updated. God Bless!
August 1, 2010 Let me appologize now for the bathroom talk...
I tell you once your child has had cancer, things do get scary from time to time. Right now, I am living it, though I’m trying very hard not to be afraid. The past three weeks have been busy with camp, Vacation Bible School, Kings Island and trips to the pool and skating rink; all good times. In the midst of the fun, Nina has been dealing with some health issues. She's been having blood and mucus in her stools, and she's been averaging six bowel movements each day. Her poor little hands are all dry and cracked from all the hand washing.
On July 15th, I took Nina to the doctor, he said her symptoms were likely being caused by one of two things: either a tear due to constipation or an infection in her intestines. He said to watch her and sent us home. I knew it couldn’t be the tear, because Nina hadn’t been constipated, quite the opposite, so I figured it had to be an infection. A week later, I called the doctor to ask how long this intestinal infection was supposed to last. When the doctor learned that her symptoms were still ongoing, he sent us immediately for blood work. This was definitely a scary Mom moment, but the next day the nurse called to tell us that Nina’s blood work looked normal. We breathed a sigh of relief and figured she'd be doing better by now.
So tomorrow is our follow up appointment. I think her pediatrician is probably expecting us to walk in there and say that Nina is back to normal. I wish that were true! Instead, I will have to tell him that she had nine abnormal bowel movements today. I have been keeping a journal for the past two weeks, writing everything down. Our hope and prayer is for a proper diagnosis. Tomorrow I will push for testing. We need to know what's going on!
Taken today. Nina looking good, but not feeling so hot. Notice her hand with the dry,red patches.
June 15, 2010 Relay for Life this Friday 7pm at Grove City High School
Time is truly flying so fast sometimes my head just spins around in circles on top of my neck. The girls finished school on June 3rd. It was Lindsey's last day at the elementary school. She will start 5th grade at an Intermediate school in the fall. She is maturing so fast, and she is so bright. Mike and I caught her checking out the stock market in the newspaper the other day. Lindsey has knocked out more than a dozen chapter books since school ended. Sometimes she starts and finishes two books on the same day, which amazes me, since it takes me weeks and sometimes months to finish one book. Both girls brought home report cards that made us really proud. Nina is usually a busy, kid who stays very active and rarely stops talking or singing. So when her report card comes home, and the teacher praises her behavior, we can’t help but smile from ear to ear.
We were pretty shocked to discover last month that Nina needed glasses. She has had no known trouble with her vision, but she sees the pediatric ophthalmologist every two years because Lindsey’s condition is hereditary. So sure enough this year, Nina joined Lindsey’s team. Both Mike and I have 20/20 vision and don’t wear glasses.
This Friday is our local Relay for Life event. It will be our first time walking, and Nina will get to walk in the survivors’ lap. We have raised $540 so far for the American Cancer Society. Thank you so much to those who have already donated. If you would like to give there is still time. Here is a link to Nina’s personal page where you can make a tax deductable donation:
I hope to get some pictures of the event, and I will share them here soon. Stay cool this summer!
April 1, 2010 Wowwy wow wow!
We had our first meeting with the urologist today. He said that even though Nina has low grade reflux, all the CT scans (that she had for the cancer) have shown two beautiful kidneys. There has been no kidney damage resulting from all the urinary tract infections (UTIs) that she had when she was little. He said that surgery was an option to go ahead and correct this condition and get the kidney reflux out of our lives, or we could just take Nina off the medicine and see what happens. He explained that it is not the reflux that is the problem. You can live with kidney reflux. The problem is the urinary tract infections that often result from her condition. He said some people can live with low grade kidney reflux such as Nina’s and be just fine. He said there is no way to know how Nina will do unless we take her off the medicine and see what happens.
So instead of jumping into the surgery, we will wait and see if it is truly necessary. The doctor said if Nina has no problems or UTIs, then there will also be no more pee pee (catheter) tests. Instead, they are going to schedule her for an ultra sound in one year to make sure her kidneys still look good. I can’t believe it! Our girl is officially off her medicine and all scans have been halted (both cancer and kidney) unless there is a problem. I am so thrilled. I hated all the radiation exposure going into her little body. This is truly a blessing. If there was a bottle or champagne in the house, the cork would already be popped. Now we just have to pray that the infection stays away!!!!!!!!!!
March 31, 2010 Malignant Melanoma?? Seriously?? And finally an appointment with the urologist….
All that I can say is praise God it wasn’t one of the girls this time. I was diagnosed with the most aggressive form of skin cancer on March 23rd. I had an “ugly duckling” mole removed from my left shin 2 weeks ago. Last week they called to tell me that I had malignant melanoma in situ. Which means the cancer was caught early while it was still confined to the top of layer of my skin. Can you say God is good? They scheduled me for surgery two days later. A plastic surgeon had to go back in and remove more skin and tissue to make certain that all cancer cells were out. Mike was able to stay with me during the surgery and hold my hand. I spent the weekend with my legs elevated, while my amazing mother in law took care of the girls.
I have learned a lot about malignant melanoma during the past few weeks. It’s another one of those nasty cancers that some refer to as a “beast.” It can spread rapidly to your bloodstream, bones, brain, liver, and lungs. Once it does spread, it can be difficult to control. So I am encouraging everyone to have their moles checked. I called mine an “ugly duckling mole” meaning this mole didn’t follow the same pattern as my other moles. It looked different. I have been watching it slowly change over the past year. It showed asymmetry, had color variation, a jagged border, and seemed to be growing. I felt God prompting me to get it checked. I showed the mole to my primary care doctor, and it took less than a week for her to get me an appointment with the dermatologist. This seems miraculous, because it took us months to get an appointment to have Lindsey’s suspicious mole checked last fall. I am thankful how fast this whole drama came and went. Although I will be forever changed in that I have to be more vigilant about watching my moles and protection in the sun. If you see me out mowing the lawn without a hat on my head, then yell at me. I must slather on the sunscreen and be even more vigilant with the kids. Their odds of getting melanoma just multiplied thanks to me. Other than that, I have just bought myself lots of visits to the dermatologist. I am now on four month checks.
Tomorrow at 12:45 we will be meeting with the pediatric urologist to discuss Nina’s kidneys. We’ve been waiting for this appointment a long time, and hopefully it will offer some insight on the next course of action. Look for an update tomorrow…
This picture shows what my mole looked like in July 2009.
The day of my surgery March 25th 2010
When I took off my bandage I was like "Seriously?? a little mole can cause this? So thankful the cancer is gone, and the scar will be a good reminder to stay vigilant against this disease. My stitches will come out in two weeks.
March 11, 2010 Cautiously doing the happy dance :-)
Dr. Ranalli walked in today and the first words out of his mouth were, "How would you like to only have to see me once a year?" If today's labwork and "urine study" as he calls it, come back ok, then Nina will only visit the Oncology Clinic once a year. Feels like a huge milestone from where this all started. Today was tough, because the clinic was full of children. There were several toddlers and one brand spanking new family. The same exact lady who came out to the waiting room to explain everything to us two years ago was having a similiar conversation this morning with the young mother of a small boy. Its always sad to see sick children, but it really got to me today. I was telling my dear friend, Kim, that I know God has brought us here for a reason. I know there is more to this. I'm just not sure what yet. I want to do more to help these kids. We didn't have this experience with Nina just to get our miracle. I believe we are being called to help. We do have something in the works for this summer. We want to partner with Alex's Lemonade stand to raise money for pediatric cancer research. Look for more details soon...
I know I've written it before, but we really like Dr. Ranalli. He is one of the best doctors that I have ever known. He really cares about his patients, and he goes above and beyond with Nina. He is very concerned about her kidneys and he has requested to see the report from the urologist after we go on April 1st. He also submitted a request today for Nina to see a GI Specialist. We mentioned that she has been having acid reflux, and he was very concerned about damage to her esophogus. He said that sometimes this can lead to precancerous conditions in the esophogus if left untreated, and that he hopes the GI doctors will be proactive with Nina. So we see the urologist on April 1st to find out what is going on with her kidneys. I'll let you know when the GI appointment is set.
Wow! It's late and I should get to bed. Before I go, I wanted to ask if some of you prayer warriors could please lift up this little girl, Violet. She lives here in Grove City and gets treated as the same clinic as Nina. We do not know her personally, but we do follow her on Caringbridge and keep her in our prayers http://www.caringbridge.org/visit/violetmariahbaier
Thank you and sweet dreams.
Today was also pajama day in kindergarten, so Nina got to wear this to the hospital. I don't think I mentioned it here, but she lost her first tooth at the end of January.
March 1, 2010 Is it really March already??
I just wanted to post that Nina's oncology appointment has been moved up two weeks earlier to March 11th at 9:30. Also, when the final report came in on Nina's kidney test, her pediatrician was in complete agreement that it is time to send her to a urologist. So a referral has been submitted, and we should be getting a call this week. It's all good!!
February 22, 2010 Somewhat disappointed.....
Today was Nina's kidney reflux test. On the way to the hospital she started asking questions:"Is this the test where I get magic cream? Will I get my finger pricked? Is it the camera test?" When I reminded her it was what we’ve always called "The Pee Pee Test" she seemed perplexed. "I don't remember what happens with that test, but I know I don't like it." I subtly reminded her of what was going to happen by mentioning the gentle, non scary parts, and as we turned the corner to enter the parking garage, she yelled, "What??? I HATE that test!! I HATE that test!!" At that point, I knew all I could do was pray. God must have heard me because Nina’s next question had nothing to do with the test, “Did you remember to bring my DS?” When we got to the lobby, SpongeBob Square Pants was playing on the flat screen tv. I realize it may not be the best show for children, but Nina LOVES it, and her mind was off the test. Thank you, SpongeBob! The lady who came out and called Nina's name had a gruff voice, nothing at all like the young, sweet, technicians we've had in the past. This lady seemed rough.... I immediately went back into prayer mode, "Dear God, please just get Nina through this test." When we got back into the room, there was this lady sitting beside the table down by where Nina's head was going to be. She introduced herself as Karen, the Child Life Specialist. We had gotten acquainted with the Child Life Specialists during Nina's hospital stay. They are wonderful people!! They are there just for the child. They play with the kids and take their minds off being sick. Karen had a cart parked next to her filled with all these toys and books. She had a sweet, calm way about her, and she explained everything to Nina as it was happening, but made it seem like no big deal. As the technicians/nurses were putting in the catheter, Karen had Nina blowing on a pinwheel to help ease the pain, and this also worked to distract Nina. We’ve never had a Child Life Specialist for this particular test before, but what a lifesaver she was. Nina got through the test better than expected. When it was over, she picked out three large iCarly stickers, and then we were off to buy the girl a cheeseburger :-)
Although the final report is not back yet, we made some discoveries during the test that we did not like. The doctor pointed to the white lines on the screen. That’s right lines with an “s”. Last year we were told that the right kidney had self-corrected and healed, but it is actually stage 1. The left kidney has made no progress and remains at stage 2. I feel so frustrated for Nina. At the very least, this means future testing and continued medication. At this point we aren’t sure about corrective procedures, but we will be contacting a specialist. Nina has been through a lot, but she truly takes in all in stride. This morning, before the test, she was hoping that her medicine would go away for good, but tonight she drank it without complaint. She’s still our tough cookie.
I will update if there is any news from the specialist, otherwise I will definitely post on March 25th when Nina sees Dr.Ranalli, her oncologist. Thank you so much for your continued prayers and support!
December 4, 2009 Our Ninabeth is 6 today!!
It was six years ago today that Nina Elizabeth Kovach came into our lives. It has been such an adventure! Sometimes we watch home videos from a time when it was just the three of us: Mike Lindsey and myself. And we were certainly happy, but boy was life quiet. Almost too quiet. Nina was defintely missing. Sometimes her constant talking and singing gets to be a little much, but I know I'll miss it once it fades. Her love and enthusiasm for life has not faded. Last week, the four of us were riding in the van and Nina started declaring, "I just love life. I love the air, I'm glad I can breathe. I'm so happy we have a car and a house. I just love my life!" When Nina says stuff like that, she's just beaming, and her voice is filled with glee. Nina often says, "This is the best day ever!" Here's a link to a video of our happy baby girl: http://www.facebook.com/tonia.kovach?v=app_2392950137&ref=name#/video/video.php?v=1261815019439
Then there's the times when Nina is not happy....again part of the adventure. Remember this: http://www.youtube.com/watch?v=nWtpT7XuhZ4 It is just so Nina. From the determination of "I can do it!" and the dissatisfacation of "No, no, no!" to the sweetness at the end of "Mommy, do you want to lay down with me?" She is something else, and again a very noisy girl. We are so glad for all the joyful noise in our lives.
Nina and her dear friend, Laykin, shared a party at World of Bounce. Their birthdays are only 5 days apart. This picture was taken while we were all singing "Happy Birthday" and it warms my heart. Nina and Laykin are true friends and they adore each other. They kept looking at each other and grinning as we sang. It was so cute! They have grown up together.
A picture of Laykin and Nina almost 3 years ago. Over the years, they have climbed trees, riden their bikes and learned to do cartwheels together. They greet each other with hugs when they are near and loud screams of "Hi" whenever they spot each other from just three houses down. What they have is very sweet and special. Happy Birthday Miss Laykin and Miss Nina! We hope you had the "Best Birthday Ever!"
October 31, 2009 Happy Halloween
We took Lindsey to the dermatologist on Wednesday. The doctor said the large mole on her back looked fine. It's 6 mm in diameter and will continue to grow as Lindsey grows, but otherwise it looks normal. We'll have to take Lindsey back every year to get it checked. We're so glad that it was a non-invasive visit. Several friends had me convinced that the doctor would try to remove that thing right in his office. It would take an army to hold Lindsey down for that, so I made sure Mike was with us. Thank goodness it didn't go down that way. We were in and out of the office in ten minutes, Lindsey made it to school before the moring announcements were over, and Mike and I got to spend the rest of the day together.
We had trick or treating here on Thursday night. The weather was absolutely beautiful! Nina was a bumble bee and Lindsey was the girl from Harry Potter. It's a tradition to have dinner with the neighbors before going out for candy. Have I ever mentioned that we have the best neighbors? Anyway, the girls made it through the entire neighborhood for the first time ever. I think they were making up for last year when they were too sick to go trick or treating. There will candy around here for a long time. It was a great night!
I also had to post a picture of Nina's new haircut. She loves it short. It was a pretty significant haircut, but not quite enough to donate to Locks of Love. She would like to do that some day. To all the kids who are trick or treating tonight, we hope you are blessed with good weather and lots of chocolate. Happy Halloween!!
September 12, 2009 Nina is a blue kid
We live in a school district with an unusal kindergarten schedule. Instead of half day every day or all day everyday, South-Western City schools has a blue/green kindergarten schedule. The blue kids go all day Monday, Thursday, and every other Wednesday. The green kids go all day Tuesday, Friday, and every other Wednesday. Are you confused yet? I don't know anyone who cares much for this schedule, but Nina is officially a blue kindergartener. She LOVES school. She LOVES riding the bus. She comes home with so much to share. She is full of stories. The only way it could possibly better is if she could go to school every single day. I must admit that having Nina home 2 or 3 days, depending on the week, has made this transiion easier on mom. I was definitely teary-eyed on her first day of school, but then she was home the next day.
Lindsey is in fourth grade, and she is officially a Junior Girl Scout. I feel like she is blossoming so much. She has always been painfully shy and reserved, but lately she seems more confident. The other night at church, I saw her giggling with a bunch of girls. They had buddy arms around each other's shoulders, and it just warmed my heart to see her so happy and carefree. We were at the pediatrician on Thursday for Lindsey's annual check up, and I had them look at a mole on her back. It measured 6mm in size, so we have to get it looked at by a dermatologist. It's a little scary after what we've been through with Nina, so prayers would be great. I will let you know the date of her appointment.
Nina's next medical appointments should be in February. She'll be due for a urology scan to check her kidneys plus her 6 month visit with Dr. Ranalli. In the meantime, we hope to stay away from Children's Hosptial. Although Nina always seems to find away to get us there. Like when she bit a hole through her tongue a few months ago in a pogo stick accident or how about last month when she woke up on a Saturday morning with a scratched cornea. With school and all their activities, who has time to be sick? So now I will finally post some pictures from Nina's first day of kindergarten.
She was truly excited!
Running toward the bus stop
Stepping onto the bus right behind Lindsey
August 20, 2009 No News is the best kind
Dr. Ranalli said if you don't hear from me within a week, then you can assume that there is no concern with Nina's test results. With the CT scans we always got a call within 24 hours. So waiting has not been fun, but I'm so glad that we never got a call. I didn't really want to go into any details, but I will mention that Nina gave us a few scares with symptoms during the months of June and July. She had an unxeplained decrease in appetite, a drastic increase in urinary frequency, and prolonged pain in her left leg. If you go online and search for symptoms of neuroblastoma, these are all listed. We sought help from the pediatrician. He ruled out a urinary tract infection, but suggested that constipation could be causing the constant urination and lack of appetite. With a few changes in Nina's diet, she was back to her "regular" self and the symptoms went away. We don't know why her left leg and hip hurt for three weeks straight, but that has also resolved itself. We thank God that these recent tests look good. HUGE relief!!!
We had an awesome time in Chicago. It was a beautiful city. We stayed at the Omni hotel. It was in a great location, and the service was amazing. The American Girl store was a huge hit. Before we left for the airport, Lindsey and Nina's Aunt Terri gave them each a gift certificate to spend in the store. They had also saved some of their own money. We bought each girl a new doll, and they were able to buy them outfits and accessories with their own money. Lindsey's Just Like Me doll got her hair done, and both of the girls got their dolls' ears pierced. We ate lunch at The American Girl Cafe. The dolls sat in highchairs at the table, and they were given their own little cups and saucers. It was too cute!! The staff sang Happy Birthday to Lindsey and brought out a beautful cake. They also brought ice cream and goodie bags. It was like a real birthday party. We ate our first true Chicago style pizza at the highly recommended Giordono's, and it did not disappoint. It was like a pizza pie. The cheese was endless. We also went up to the 94th floor of the John Hancock Observatory where we had an awesome view of the city. Lindsey loved learning about Chicago and all it's history. Our long weekend also allowed us to spend some time at The Navy Pier. There was so much to do all in one place. We could probably spend a whole weekend in this area alone, and still not have time to do it all.
An unforgettable day at The American Girl Store
Holy Pizza, Batman!!!!!!
We toured the city on a horse and carriage ride.
We could never top this birthday nor will we ever try. The free airline tickets definitely helped, and Lindsey agreed to forgo a party with her friends. She's thinking about having her first sleepover party next year. That makes this trip to Chicago sound like a piece of cake, or should I say pizza pie???
Btw, in case Nina hasn't told you herself, she is growing out her bangs. She's been telling everyone she meets that she's growing out her bangs. Our girl is growing up! Nina starts kindergarten on Thursday. Check back for some first day pictures......
August 10, 2009
I guess a visit to the oncologist today was just what I needed to finally post an update. It has been six months since Nina has seen Dr. Ranalli. There was no yucky contrasting fluid to drink today and no IV. There was no "big camera" and thankfully no radiation exposure as a parting gift. She is in the low risk category now. Apparently our visits now involve a urine study, bloodwork, and an examination by Dr. Ranalli. Things went well. Test results will be in later this week.
Nina in the waiting room. You can't tell from this angle, but sadly the clinic was extremely busy today. We saw lots of kids.
Nina was so happy that all she got was a finger prick today.
Lindsey and Nina on the hospital playground.
First let me start by saying that I'm glad that Nina does not need to go to the clinic every 3 months anymore. I know its a good thing. However, what I've realized is that life is more challenging without the comfort of those scans. Those regular peaks inside her body took away some of the anxiety that comes along with having a child who has had cancer. My heart goes out to other parents who would just like to be in our position. It must be so difficult for them watching their child battling this disease. We have a child who is cancer free and sometimes life still feels like a rollercoaster, not the fun kind, but the kind that makes you feel sick to your stomach. Worry, worry, worry. It's just something we live with, and we try to give to God. He will take care of us!
Lindsey turns 9 on Sunday. We got free airline tickets when we went on our Disney trip last year because we were bumped off our flight. Instead of a birthday party this year, Lindsey has decided that she would like to go to CHICAGO. We are leaving on Friday and returning Sunday afternoon. We will be visiting the American Girl store this Saturday. After our visit with Dr. Ranalli today, I am even more excited. He use to live there, and he was able to tell us all the must do things and the best place to get pizza and so on. He told us to page him if we get lost or just have any questions while we're there. He really is a great guy! Btw, Nina would like to request prayers for a safe trip. She has been worried about plane crashes lately. Thanks in advance! I will definitely update in a few days when we know something. I'll post some Chicago pictures as well.
April 30th, 2009 Feeling Sad
I wasn't planning to update Nina's site today. Instead, I came here to check on some of the neuroblastoma kids that I have been following on our "Links" page. The very first one I clicked on was Erin Buenger. It's been a while since I've checked her site, and I've been thinking about her all day. I was shocked and saddened to read that Erin is now an angel. This incredible 11 year old entered heaven on April 9th, 2009. She was such a neat kid, and I loved reading her mother's blog. Erin lived. I mean she really lived life. She loved people. She made the world a better place, and her life and positive attitude inspired me. When her mom, Vickie, signed Nina's guestbook last July, I was so excited. I felt like a celebrity had been here. I am so sad for this family's loss. I leave you with my favorite picture of Erin Channing Buenger June 20, 1997- April 9, 2009:
April 8th, 2009 "Rule #7: Always have fun cause it's the best!!!"
Nina has been doing GREAT! The other day she was getting into the bath tub and out of no where she said, "Rule #7: Always have fun cause it's the best!" She also told me that she loves being 5 cause it's the best. All in all, she is a happy little girl, and she loves being alive. Nearly everyday she talks about how lucky she is because...... and the answer changes each time. Some fill ins have been because she can see, because she has two legs, because we have food, because we have a home.....because we have everything we need. It warms my heart to see that she has so much gratitude and joy. She talks about her future with a crack of excitment in her voice. Praise God for all he has done for Nina!
We have decided not to pursue a pediatric urologist at this time. Instead, Nina is staying on the daily antibiotic, and we are giving her a break from doctors and Children's Hospital. The medicine bothers us more than it does her, so this seems like the right thing for right now.
I have a prayer request. Last summer, I told you about a three year old boy here in Grove City who was diagnosed with cancer. Brayden's tumor was behind his left eye and could not be removed with surgery. All these months he has been getting chemotherapy and radiation. I think it has been like 40 weeks. He finished his last dose of chemo last week, and Friday (yes, Good Friday) he will be getting his scans to see if his cancer is gone. He has been through so much. Ten months of treatment! I have recently become friends with his mom, Jennifer, and I am just hoping for a good outcome. Please pray that Brayden will be cancer free on Friday. Here is his Caringbridge site: http://www.caringbridge.org/visit/braydenbueter Check it out. You will fall in love with the little Batman. Thanks in advance! You are all wonderful!
February 25th, 2009 "Persistant Grade 2 Reflux of the Left Kidney"
The nurse called yesterday with the official results persistant grade 2 reflux of the left kidney, so the pediatrician wants to keep Nina on the daily antibiotic for another year and then retest in 12 months. For whatever reason, the thought of Nina taking an antibiotic everyday for 2 years really bothers me. I would like a second opinion from a true pediatric urologist. I know children typically self correct or outgrow their reflux by the age of 5. Nina will be stuck on this medicine until she is almost 6 and a half.
There is a new minimally invasive procedure for kidney reflux called "DEFLUX". I would like to see if Nina would be a candidate for this. Supposedly kids can play sports the same day after having the procedure. If the specialist says 12 more months on anibiotics is the best thing for Nina, then I will accept it more easily. I just want to be sure that we are doing the right thing. Children's Hospital has several urologists with high marks. I'll let you know if we can get an appointment. Thanks for sticking with us!!!
February 23rd, 2009 A Victory...well kind of.
There was screaming and crying during Nina's test this morning. I was glad that Mike could be present this time. He was working out of town last year and couldn't be there. Mike just has this calming way about him. He is silly and he takes Nina's mind off the situation. When the test was over and we were driving home Mike asked Nina, "Now was that really as bad as you thought it was going to be"? Nina paused to think about it before answering. She said, "No, it wasn't that bad". The test was no fun, but it wasn't that awful either. I call that a victory.
Dr. Bates, who performed the test said that the right kidney was completely healed. Yes...Another victory!! Unfortuately, there was still reflux present on the left side. We don't know what this means for Nina. She may stay on the antibiotics a little longer and retest to see if the left side has improved, or surgery may be an option. Nina's doctor is suppose to call later this week after he recieves the test results, so I will let you know then. Thanks again for your support and prayers. A dreaded day wasn't so bad after all.
Nina proudly holding her "I stopped sucking my thumb trophy."
February 20th, 2009 "Scans looked perfect! See you in 6 months!"
Dr. Ranalli finally called around 2pm and gave us the good news. I'm so glad to have this weight lifted. We will get through Monday, and somehow I just feel optimistic that her kidneys will be healed. The reflux did it's job. It revealed the tumor. The kidney reflux is a condition Nina was born with, yet we had no idea it was there for nearly four years. Nina did not get her first UTI until she was three and a half. Then she had urinary tract infections boom boom boom...one right after the other. The ultra sound was ordered, and the tumor was discovered.
Nina's reflux was stage 2 in both kidneys with a decent chance of outgrowing it. So that is what I am hoping and praying for now. I would love to pour her daily antibiotics down the toilet. We'll see on Monday what God has planned. We have wonderful news to focus on today :-)
February 19th, 2009 "Nina may be out of the woods"
Those were Dr. Ranalli's words. He said that if today's scan comes back clear, then Nina is likely out of the woods. He feels a year cancer free would put her at a low enough risk that CT scans would no longer be necessary. We are so so happy and hopeful that everything is good. Nina will still have oncology visits every 6 months which will involve bloodwork and urine tests, but no more scans. Hooray! We have absolutely no news about today's test. Dr. Ranalli said he will call us tomorrow with the results.
If you prayed for us today then we thank you. Nina was scared and did a bit of crying, but she walked out of there saying "That didn't really hurt. If you ever have to get the camera test, then you should ask for the magic cream." The nurses put numbing cream on Nina's arms so that she wouldn't feel the IV going in. We took Nina to Chuck E. Cheese after leaving the hospital. It was a great time. I'll post a few pictures from our day.
Unfortunately, we do have another prayer request for Nina. We were so happy that today could possibly be Nina's last scan. We delighted in this news all the way home. When we got home, we noticed a message on the answering machine. It was the pediatrician calling to say that Nina's VCUG test had been scheduled for Monday. UGH! This Monday the 23rd. Like four days away.... We will be back at Children's Hospital again. The VCUG is the most dreaded of all of Nina's tests. It is her kidney reflux test. She hates this test and refers to it as the pee pee test. It is invasive and involves a catheter and dye. We haven't broken the news to her yet. We definitely need prayers to get through this miserable test. We also hope that it will reveal that she has outgrown the kidney reflux, so that she will never have to take this test again. Please let it be her last pee pee test. I'll be back tomorrow with CT results. Thanks again!!
Nina with her magic cream
Lots of fun at Chuck E Cheese
February 18th, 2009 Tomorrow is T Day
I intended to post this sooner, but I didn't. Thanks to my dear friend, Holly Cochran, for getting the word out that tomorrow is Nina's 12 month CT scan and oncology appointment at Children's. Nina has had a ton of anxiety today. She is worried about the elastic band that they tie around her arm before they insert the IV. She's been crying about how much its going to hurt. She's also dreading the burning feeling that goes through her body when they inject the contrast. So again, we not only need prayers for good test results, but also prayers that Nina gets through her stressful day. Thanks in advance! I'll update tomorrow....
February 1st, 2009 Before and After Photos
Now that it's been one year since surgery, I thought it was time to share an updated photo of Nina's incision. The before picture was taken one month after surgery, and the after picture was taken after 12 months of healing. We are all amazed at how great she looks. God has done wonders!! He is wonderful!!!! Thank you so much for all your prayers.
Before: One month post-op
After: 12 months post-op
January 31st 2009 Surgery was one year ago today!
There have been many anniversaries over the past week. Each day, I 've remembered so vividly what we were doing exactly one year before. The memories are so fresh and the emotions still raw. On January 25th 2008, we spent the morning at Children's Hospital, where Nina had her first ever CT scan. I was still thinking "kidneys" at that point. The technician in radiology couldn't tell us what they were looking at. Later that day, I was back at home sitting on the couch reading the newspaper, and I heard Nina cackling with laughter. She kept saying "Reindeer! Reindeer!" It took a minute before I looked up from the paper, and when I did, I couldn't believe what I was seeing. We have a large window in our family room that looks out over the back yard. There were 8 deer in the yard behind ours. We live in a neighborhood on a cul de sac, only a few minutes from the city of Columbus. We have NEVER seen deer.
I was certainly feeling anxiety over all the testing going on with my daughter, but seeing the deer brought peace. It was as though the deer were messengers from God reminding us that he would be with us. We have yet to find another neighbor who saw these deer. It was hard for anyone to believe.
Thursday January 29th 2009
The new year has already taken off and doesn't show signs of slowing down. Everyone is doing fine. Mike returned to school last week. His course load designates him as a full time student. He is a full time student, working full time, and putting in 20-30 hours of overtime. It is madness, but it will be worth it. He will have his bachelor's degree before 2009 is over. Let's hope so anyway. Mike actually returned to school last year at this time. He was in his first semester back when we recieved the news of Nina's cancer. He dropped his classes without hesitation. He would be focusing on his family and getting Nina well. The weekend Nina was diagnosed, I remember Mike going out and buying a food processor and a steamer as well as a cookbook that helps you sneak vegetables into your child's food. He was going to do whatever it took to see Nina healthy. By the way, spinach brownies are not so tasty. Mike also tried to keep Nina laughing. We had heard that it was good for the immune system. The girls have always found most of what Mike says and does to be funny. Nina's deep rooted belly laugh was like music. It brought tears to our eyes. Mike stayed strong, focused, and faithful. He has been that way for as long as I have known him. He is an optimist. He sees the potential for good. I often describe him as my hand holder. He makes me stronger and better. Mike, you will rise above the essays, papers, and assignments. You will make it to the finish line, and you will be encouraging others who struggle along the same path. I love you!
Tuesday December 30th 2008
I received the sad news this morning that eight year old Eden Adams passed away yesterday. Eden was a local girl who has been fighting neuroblastoma for several years. You may remember this picture of Eden standing beside the President as he signed the Conquer Childhood Cancer Act over the summer (see archives). She was such a brave little girl with a huge smile. Our prayers go out to her loved ones. Here is their blog: http://www.edenadams.org/blog/
We had a nice Christmas. Lindsey's favorite present was a Nintendo DS. Nina got a Bitty Baby, the Bitty Baby crib, and the Bitty Baby stroller. She named the baby Sunshine. Nina takes her job as Sunshine's mom very seriously. It can get annoying at night when we're trying to put our kids to bed, and Nina has to stop and put Sunshine to bed first, otherwise her love and dedication to the doll have been adorable. I'll have to post some pictures of Sunshine soon.
Our Saturday at the Ronald McDonald House went well. We met with our small group at noon to decorate Christmas cookies. At 2:00, we headed over to the Ronald McDonald House with 19 dozen cookies to deliver. They were so happy to receive them. They gave us a tour of the new facility which sits right across from Nationwide Children's Hospital. It is beautiful, and it has the capacity for 81 families. We learned that each day, volunteers come in three times a day to cook meals for 81 families. Our small group immediately knew that we wanted to become regular volunteers. The lady gave us a list of ways that we can help, and our small group has decided to adopt the Ronald McDonald house as a service project. Steve and Alice, thank you so much for opening up your home, and letting us trash your kitchen. Alice, you make the prettiest cookies I have ever seen. To the rest of our small group: Crissy and Paul, Beth and Bill, Faith and Ken, we are so thankful for you all. Here are some pictures from our day:
Decorating cookies in Steve and Alice's kitchen.
The cookies went on forever.....
Small Group kids with the giant teddy bear in the RMH library.
Our small group in the lobby at the RMH. We consist of five families.
I hope everyone has a safe, healthy, and happy new year!!! Even though Nina was diagnosed in 2008, it was a great year. We drew closer to God, we developed stronger friendships and learned to depend on other people. We do not know what surprises that 2009 will bring, but we do know that God will never leave our side. May you also find this to be true in the new year.
Friday, December 19th 2008
Nina turned five on December the 4th. Hello Kitty was this year's party theme. It was an exciting week full of all things kitty. We adopted a one year old cat named Styles. The girls absolutely love him. Nina thinks everything Styles does is hilarious. She laughs and laughs deep in her belly at his every move. If what they say about laughter and the immune system is true, then Nina is going to be ok.
Styles is great with kids. He tolerates the loudness and roughness quite well. Things could be better with Syles and our dog, Goldie. He still hisses at her if she looks at him the wrong way. Poor Goldie wants to be friends so badly, but it may take a while.
Tomorrow we're going to visit the Ronald McDonald House and deliver cookies to the families that won't get to go home for Christmas :-( As an avid football fan, I remember watching the superbowl from Nina's hospital bed and thinking, "This isn't quite how I imagined this night would be." I can only imagine how hard it would be at Christmas. I wish we could do more for these families. We're so thankful for where Nina is today, and how great she's feeling. We could be on a completely different path right now, so every regular day is truly a gift. Her scar, which is hardly visible, reminds us of what awesome things God has done.Merry Christmas!
Monday, November 24th 2008
The preliminary results are in on Nina's CT scan, and things are looking good. We are still waiting for bloodwork and results on her catecholamine levels. Things went a thousand times better today than they did three months ago. Nina told the nurses she was scared, but she didn't do much fighting or screaming. She was strong and brave. Her attitude was outstanding, and she had a good old time playing with the toys in the waiting room.Here's a picture of the tower Nina built in the oncology clinic.
We will be eating turkey with Mike's family up in Cleveland on Thursday. We have an abundance to be thankful for this year. I hope you all have a wonderful Thanksgiving too!!
Friday, November 21st 2008
Warning this story contains references to poo so plug your nose!
It was one year ago that Lindsey came running from the playroom yelling, "Nina swallowed a penny." When Mike found Nina she was crying and repeating, "I'm going to die!" She was three, almost four. She knew better, so why did she do it? Why, why, why? Well as you can guess, Nina did not die that day. No, she was fine. She hadn't choked on the coin. She was breathing, alert, and her passage way was clear. She was going to be fine.
Two days later, Nina's stomach started hurting. My mommy instincts said it was time to get her checked out. We went for an X-ray. Sure enough the coin was right there on the screen. The doctor, who couldn't help but chuckle, said we needed to watch the toilet closely. If we hadn't spotted it within 2 weeks, she would have to come back for another X-ray. There was no way I was going to needlessly expose Nina to another dose of radiation. We left with our souvenir photo. It would be the last. I would get that penny!
It became my obsession. I went home that day and dedicated myself to retrieving that penny. I put a box of medical gloves next to each toilet. By the second day, I had a system in place. I learned that dissecting the poo inside the toilet would not work. The water would quickly cloud up making it impossible to see anything. Instead, I would have to remove Nina's deposit, place it on a flushable wipe, and start panning for copper:-) I was getting lots of practice. It was then that I realized how frequently Nina was moving her bowels. She was going three to four times a day…poor me!! I remember feeling like something was not quite right. I mentioned it to the doctor a week later when we were in for an unrelated urinary tract infection. I started writing down what Nina was eating to see if she might have celiac disease. I now know in hindsight that the tumor was likely causing the frequent, watery stools. Some ganglioneuroblastomas secrete vasoactive intestinal peptide or VIP, resulting in chronic diarrhea. This may have been Nina's only symptom.
The days turned into weeks, and three to four times a day, I would go through my routine without any luck. There were only three, maybe four times that Mike was in charge. He had his own system. He would unfold a wire coat hanger; stick it down in the toilet, moving the poo around making a cloudy mess. He couldn't see anything, but being an ex-sonar guy in the Navy, he thought he would be able to hear the penny if he listened closely. At the two week mark, I had had enough. I kept thinking what if I am doing all this work, and the penny has already passed. I needed to know. Heck, I deserved to know. We went back for a second X-ray, and indeed the penny was gone. I had been such a watchdog. It had to have been Mike's casual method that failed. I'll bet with all that pooping, the penny had been out since day 5, but I was still needlessly putting on those medical gloves for another ten days, waiting for a penny that was already down in the sewer.
I put myself through all that stress and stink just to ensure Nina would not need the second X-ray. Ironically, two months later we would learn that scans and X-rays and small doses of radiation would become a normal part of Nina's life. Monday will bring more of the same. I can't complain. There will be kids at the hospital getting direct hits of radiation attempting to kill their cancer. We are blessed indeed! I can't seem to write that enough.
Tuesday, November 11th 2008
I just wanted to post that Nina's next CT scan and oncology appointment have been set for Monday, November 24th at 8:30 am. It's hard to believe that we are at the 9 month mark. Now that Nina is anxious and scared of doctors, we need just as many prayers to get through the day as we do for good health. Thanks for your support.
Sunday, November 9th 2008
We've had some sickies around here. Lindsey had an ugly virus the week of Halloween. She missed three days of school and trick or treating. She went back to school on Monday. On Tuesday, Nina's chills and fever began. Her temperature would get between 103 and 104. She was burning up. Even on Motrin, her fever stayed at 101. This went on for four days. When we realized she wasn't getting better as quickly as Lindsey did, it became worrisome. So on Saturday we took Nina to Urgent Care at Children's hospital. I tell you that girl has gotten so difficult when it comes to doctors. It took 15 minutes before Nina would open her mouth so that the nurse could take a throat culture. The strep test came back negative, but Nina's throat was red and her tonsils were swollen. The doctor said the left tonsil was considerably larger than the right. He diagnosed her with tonsilitis and put her on a strong anibiotic. She never spiked another fever after going on the medicine. The funny thing is, Nina never really complained of a sore throat. She had a bad headache and all sorts of body aches. She once said, "I hurt from my head to my knees."
Here is a picture of Halloween night at home. Nina was a cat (Hello Kitty) Lindsey was a dog and Goldie dressed up as a little girl.