I just have to say that Nina has been doing so much better. Her temperment has really improved during the last few months. Mike commented the other night on how cute she has been lately, referring to her personality. For a while, I wondered if perhaps the daily antibiotic was affecting Nina's moods, or if the missing adrenal gland could be playing a role. Whatever it was, it has resolved. We've really been enjoying our happy girl.
Here are some pictures from our trip to Walt Disney World. We spent 6 nights at the Port Orleans Riverside hotel on Disney property. Lindsey and Nina loved the pool. We all enjoyed the slide.
The water slide at Port Orleans Riverside
Lindsey and Nina in front of the Tree of Life at the Animal Kingdom
Minnie was the sweetest!
More fun at the Animal Kingdom
Epcot- The Living Seas
Lunch at "The Coral Reef"
Lindsey was our photographer
With Dale at "The Garden Grill"
Nina and I were contestants on a game show at Epcot
Lindsey getting all dolled up at the Bibbidi Bobbidi Boutique- Downtown Disney
Nina loved the whole experience.
Lindsey as Cinderella- all ready for the Halloween party at The Magic Kingdom
Just look at that hair.
Just look at THAT hair. Nina as Punk Rocker Belle. We begged her to get the classic princess hair, but she had to be different. As it turns out, this look was totally Nina, and she pulled it off very well.
Nina after a long night of trick or treating at Disney World.
We ate breakfast at the castle with the princesses.
O-H * I-O !!
Sad faces.......it was almost time to leave the Magic Kingdom for the last time.
Then there was Sea World. We spent two more nights at a hotel near SW. We could watch the dolphins all day.
It's hard not to smile when you look at them.
Mike and the girls on a ride at Sea World.
It was a week I will never forget. Mike thought our first trip to Disney was better. Lindsey and I thought this trip was the best. Nina said her third trip WILL be the best. I'm with her... I want to go back. I think I love that place more than the kids do. We met so many nice people from all over. The weather was nice. The kids were healthy. I couldn't have asked for a better week. We'll be back!!
Monday October 13, 2008
It's been two months since our last post. Life has been so busy, and I will get to that in a moment, but first I wanted to share a link with you. This website has allowed us to connect with other families who have also faced ganglioneuroblastoma. One family, the Gillespie's from Canada, watched their young daughter, Breanna, become very sick before they discovered her stage 2 tumor. In honor of the one year anniversary of Breanna's remission, her parents have decided to run a marathon to raise money for neuroblastoma research. Here is the link, if you would like to watch their beautiful video and perhaps support their cause:
The weeks, and now months have been busy with back to school, gymnastics, swim lessons, the Rocks program at church, and most recently play practice for the annual Christmas play. This will be Nina's first year, as they have decided to include the preschoolers. Lindsey will be ringing Christmas Carols in the bell choir.
Nina learned to ride her bike without training wheels over Labor day weekend. The next day, we went for a family bike ride at "Three Creeks Park". We rode for nearly 6 miles. It was so fun! We've been on several bike rides since.
Unfortunately, bumps and bruises are a part of the process.
We spent 8 nights in Disney World in late September. The trip was wonderful in every way. The weather was mostly pleasant, and everyone stayed healthy. September is our favorite time to visit Disney. The crowds are so small, hotels are at their cheapest and Disney offers free dining. We get to eat at nice restaurants for free. That is when school has just restarted, so teachers are spending a lot of time reviewing old material. It works for us. I have lots of pictures to share from our trip. I took over 700, but I promise not to share them all. Coming soon........Disney pictures.
Tuesday August 12, 2008,
Yesterday was a long, hard, day, but it ended well with a phone call from Dr. Ranalli saying that all of Nina's scans came back perfect. On a previous chest scan, Nina had had a 1 mm calcified nodule on her lung, and even that is gone. She looked great. Drinking the contrasting fluids is a 2 hour process. It was a beautiful day, so the nurse let us take the drink outside, so that the girls could enjoy the playground.
Nina was going to be getting CT scans of the abdomen, chest, and pelvic regions. We soon learned that we were dealing with a different child than we have in the past. Nina was scared this time. For the first time, the "Tough Cookie" shirt she was wearing was inappropriate. Nina was screaming and crying while the nurses inserted her IV. She was inconsolable. Suddenly, the talking CT machine (which Nina loves) told her to hold her breath. Mid-scream Nina instantly obeyed the machine. She quickly tightened her lips and held her breath. By the time the machine told her to exhale, she was all calmed down.
We had all eaten an early breakfast, and we didn't have time for lunch between the CT scans and the appointment with Dr. Ranalli, so we wisely grabbed a snack from the cafeteria before heading upstairs. When it was time for Nina's finger prick, I had her on my lap, and she was screaming and fighting to get away. Thank goodness Mike was there for support. We got through that and were taken to an examing room where we waited for over an hour. Meanwhile, the contrasting fluids started to upset Nina's tummy, and she started having diarrhea. She was able to make it to the restroom each time, so thankfully we got through that, and we finally got to meet with Dr. Ranalli. We all really like him. He seems genuinely interested in every aspect of Nina. He answers all my questions, and he won't leave the room if he thinks something is still bothering me. He is good!
We were exhausted by the time we finally got out of there. We were thankful for the call that said we wouldn't have to do this again for three more months. Our prayers are with those who do this daily, those who must call the hospital their second homes.
She had to drink 4 oz. every 45 minutes.
Nina's a water drinker. She doesn't even like real fruit punch, so she has to choke this stuff down.
The playground was a treat. It was in the 70's. Lindsey was awesome throughout the entire day.
Nina staring at her finger prick.
Monday August 11, 2008 7am
Today is the big day. We will be at the hospital from 11am to about 3pm for testing. Please keep Nina in your thoughts and prayers. I will try to post later to let everyone know how things went.
Wednesday August 6, 2008
Skylar, Lindsey, Nina, and Laykin
Last night, Mike insisted on being there. Even though Skylar's mom, Amy, and I had decided to take all the girls to get their ears pierced together, we weren't allowed to go during the day. We had to wait until Mike got off work, so that he could be present. He is the kind of Dad who works a ton, sometimes 19 days straight, but he is ALWAYS there for the big stuff. Even though Mike's job is important, he knows whats really important. Mike hurried to get home by 5:30. He changed his clothes, then we picked up Amy, Skylar, and three year old, Laykin. We fit seven people: three adults, three boosters, and one car seat in the van. We were off to the mall. Our destination was Claire's. Here is what happens when you get your ears pierced at Claire's:
First you choose your starter earrings. Nina chose little gold balls. While Nina was picking her earrings, I had to sign a consent form.
Next, they give you some clips to pin the hair away from the ears. Isn't Mike doing a lovely job??
Then, they use a maker to determine where the holes will be. I thought this dot was a little low, so I asked the lady to move it up slightly.
Getting ready....... lining up the ear "guns". They will do both holes at the same time if you request it. I hightly recommend this. I didn't even know they did this until I saw Maddie get her ears pierced on "John and Kate Plus Eight"
We went through this routine three times. First with Sklyar, then Lindsey, and Nina was last. Laykin decided she wasn't ready to get her ears pierced. So here is each girl's reaction when the earrings went through:
They all admitted that it was painful, but they were brave girls. Isn't Skylar's picture priceless? She picked some pretty pink daisys as her starter earrrings. I expected my girls to choose them too, or something similar, but they both surprised me. Lindsey chose her birthstone. It is the August peridot. She has never like this green stone, but she said she wanted her earrings to have something to do with her birthday. They look very pretty. Nina chose little gold balls. They looked exactly liked the starter earrings I got when I was nine. She said she picked them because they match everything. When it was over, we did a little earring shopping. Now we just have to wait six weeks until they can change their earrings.
Six red ears....showing off their pretty earrings.
Monday August 4, 2008
Lindsey and Nina stayed super busy at Grandma's last week. They had a tea party at "Miss Molly's Tea Room." They went to Kiddie Park and swimming in Lake Erie. They played Monster Golf and went to Hinkley Park. They came home tired with very nice tans. Mike and I enjoyed our time, but it was great to have them back.
On Friday, the girls were invited to a slumber party at their friend Skylar's house. It was Nina's first sleepover, and she was so excited. She stayed up until 1:30 am and Lindsey lasted an hour longer. They had a blast. I think Nina is still recovering. Here is a picture I took right before the party:
Nina, who fears nothing, has been asking if she can get her ears pierced for quite some time. Lindsey, who hates needles, has been reluctant. With her eigth birthday coming up, Lindsey has decided that she is finally ready. So it looks like both girls will be getting their ears pierced in honor of Lindsey's birthday. Look for ear piercing pictures coming soon.
Friday August 1, 2008
Here are just some quick shots of Nina's scar:
Remember this picture from one month post-op?
Here she is at exactly 6 months post-op.
We think Nina looks great. Her healing has been amazing.
Thursday July 31, 2008
Six months ago today, the tumor was removed from Nina's body, and our girl became cancer free. I remember Dr. King coming out of surgery to speak with us. I kept thinking if it's bad, he'll take us into one of those private conference rooms they have just off of the main waiting room. I guess I should have known that Dr. King was too straight forward for that. As he pulled the mask away from his mouth, he began talking right there in the lobby. We were among several nervous families who were anxious to hear news about their own kids. All ears were on our surgeon. Dr. King started by saying how strong Nina had been during surgery, and that she was in the recovery room doing just fine. Then he said it. "They saw some neuroblasts under the microscope." Just like that. Cancer cells had been taken from our four year old's body. I wanted to dwell on all the scary things the doctor had said, but Mike would not allow it.
Mike automatically embraced the positive things that Dr. King had said. "No chemo port has been implanted at this time, because we are hoping the cancer will be staged low, and chemo might not be needed." At first, I felt like slapping Mike. I felt like he was treating the situation like it was no big deal. I remember him saying, "We will deal with it. Whatever happens, its going to be ok." Then..... I felt myself feeding off of his POSITIVE attitude. Even though he was hurting, (I saw his cheeks drenched a few times that week too) his strength and positive attitude never faltered. His faith never waivered. We WERE going to be ok.
Still I can not forget what those shoes felt like....the shoes of a parent whose child has cancer. It was incredibly painful, and we were blessed with a short walk. I can not begin to imagine the ongoing pain and agony so many parents feel. The hospital experience has been stained in my heart. It hurts to think about it, and I hurt for other parents who are still wearing those shoes. Each month that all four of us are healthy, is truly a gift from God. Nina has been busy and strong. She can do a beautiful cart wheel now. She and Lindsey fight like most siblings do. I'll admit it can become bothersome, but mostly I just appreciate that normalcy.
On August 11th, we will return to the hospital for Nina's scan and check up. She will be unable to eat or drink anything after 7am. She will start drinking her contrasting fluids at 11am, and her CT scan isn't until 1pm. We will go upstairs to meet with the oncologist after the scan. Her scans are usually in the morning, so we will see how she does without food or water for that long. Last time, Mike and I fasted with her. We won't be kidding ourselves this time. Hungry moms and dads make for grouchy grown ups. Please keep Nina in your prayers.
Tuesday July 29, 2008 A Victory
President George W. Bush is joined at his desk by Hannah Lewis, age 7, left, Wyatt Rech, age 6, Eden Adams, age 8, right, Mrs. Laura Bush, other family members, and Sen. Norm Coleman R-MN; Rep. Deborah Pryce R-OH; and Rep. Chris Van Hollen D-MD; Tuesday, July 29, 2008, after signing the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 in the Oval Office of the White House. White House photo by Eric Draper
Bush signs pediatric cancer bill named for Rep. Pryce's daughter Tuesday, July 29, 2008 1:37 PM By Jonathan Riskind THE COLUMBUS DISPATCH Ron Edmonds
WASHINGTON -- They've been in a tough fight with a vicious disease, but two little girls from central Ohio emerged from the Oval Office and walked out onto the driveway outside the White House this morning with wide grins, official pins and presidential words of encouragement.
Hannah Lewis, 7, of Reynoldsburg and Eden Adams, 8, of New Albany, who became friends as they underwent cancer treatment at Nationwide Children's Hospital in Columbus, were among those on hand to watch President Bush sign a pediatric cancer bill into law.
The Caroline Pryce Walker Conquer Childhood Cancer Act was crafted by Rep. Deborah Pryce, R-Upper Arlington, and named by lawmakers after her daughter, who died in 1999 after battling neuroblastoma.
Both Hannah and Eden used the same word to describe meeting the president and first lady, being given presents and a tour of the Oval Office: "Cool."
The signing ceremony was not open to the press aside from still photographers, but Hannah's mother, Jessica Lewis, said Bush told the families that he knew "we were going through a tough time and wished us the best."
President Bush smiles at 8-year-old Eden Adams of New Albany in the Oval Office of the White House today after signing the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. On the desk is a photo of Caroline.
Jessica Lewis and Eden's father, Rourke Adams, said they hope the next step after President Bush's signature will be for Congress to approve spending the first $30 million installment this year of what the law calls for: $150 million over five years for such initiatives as expanded pediatric cancer research and a national childhood cancer database.
The single parents saw their friendship at Nationwide Children's Hospital, which paid for the families to attend the White House signing ceremony, blossom into a relationship.
"This is something we deal with every day," Rourke Adams said about having a child who is battling cancer. Adams said it is his hope that a fully funded cancer database will in future years give researchers more information about why children develop cancer.
After the signing ceremony, Pryce said she was "delighted" to see her legislation enacted.
The president and first lady spent a lot of time with the children and families – including Hannah's five-year-old brother, Duncan, and Eden's brother Riley, 14 - before Bush wielded his signing pen, Pryce said. Bush lost his three-year-old sister Robin to leukemia in 1953 and Bush told Pryce he is looking forward to telling his parents that he got to sign the pediatric cancer bill into law, the congresswoman added.
"This is a great step forward," Pryce said. "We have been waiting for this day for years now."
Legislators named the bill for Caroline Pryce Walker, shown here with her mother, U.S. Rep. Deborah Pryce, at home in Columbus in 1998.
Mike, Nina, and I met the adorable Hannah Lewis and her mother, Jessica, at the oncology clinic back in February, and we have stayed in touch ever since. When Jessica decided to take Hannah and Eden to speak in front of Congress back in June, she needed help funding her trip. Mike and I knew how much charm and charisma that Hannah had. We knew she would have an impact on getting this legislation passed. We wrote a check without hesitation. We were truly celebrating when we heard that this bill was being passed into law. We are so proud of Hannah and Eden.
I also had no idea that our Represenative Deborah Pryce had lost a daughter to neuroblastoma. I am so proud of her role in this bill, and I am really glad that I gave her my vote. This is government working in it's truest form.
Tuesday July 22, 2008
Other than Nina's daily dose of Bactrim, we have had a nice break from all things medical. Nina's next oncology appointment is coming up in August. The "Scanxiety" as one parent has coined it, is already creeping in. I feel somewhat nervous even though things are likely fine. Nina has had her moments lately. She has been so irrirable and unpleasant, far worse than the terrible twos or the Nina we had at three. I often question whether it could be the antibiotic. Some of its common side effects include irritability and fatigue. And then there's the missing adrenal gland. During surgery the right adrenal had to be completely removed. Nina should still live a normal live with just one, but in doing research, I have discovered how important these glands are in the production and regulation of many of the body's chemicals and hormones. I guess things could be a little off in her body. Nina's thumb has become her best friend again, and she is sucking quite often.
Nina attended Vacation Bible School for the first time this year, and she loved it. She sang her little heart out at the closing program. I taught first grade at VBS. Our theme was "God's Big Backyard." Lindsey also had Girl Scout camp all week, so she was one tired girl by 9:30 each night. But I don't think the week could have gone any better. Nina loved going to VBS, and she will probably be happy when preschool resumes in the fall.
On the 4th of July, Mike thought it would be fun to have a food fight at the Annual block party. He cooked up some mashed potatoes, noodles, oat meal, and opened some giant cans of vanilla pudding. Here are some pictures from the fourth of July block party:
I am dropping the girls off on Friday at Grandma's house up in Cleveland. They will be staying for 5 nights. Lindsey has done this before, but it will be Nina's first year. The girls are very excited. Mom and Dad are too. "Shhhhhhhhhhh!" That will be our little secret.
Monday June 9, 2008
Lindsey finished school last Wednesday. She brought home a great report card. We are so proud! On Thursday morning, we decided to go fishing. We went to a pond in a subdivision close to our home. It is full of small fish who are eager to bite. The girls were constantly yelling, "I caught one!" Nina was particularly lucky that day. Lindsey had some excitement of her own. I was so glad that Mike was there when Lindsey started screaming and crying. I looked over, and she was holding her hand. I knew she must have gotten a hook stuck in her finger. I screamed for Mike to come over. He wrestled with her hand for what seemed like forever. At that point I was in prayer mode. Mike asked me to get his Gerber and pliers out of the tool box. "Oh no!" I thought. "This can't be good!" Before I could find the tools, I hear Mike say, "Nevermind!" Lindsey was finally quiet, and there was no blood. Unbelievable! The fishing wire had been tightly wrapped around one of Lindsey's thumbs and the hook went superficially through her skin. Praise God she was ok!
On a serious note, yesterday in church, there was a prayer request for a little boy here in Grove City. He is three year old, Brayden. He was just diagnosed with a cancer called Rhabdomyosarcoma. He will be undergoing 42 weeks of chemotherapy and radiation. Please keep Brayden and his family in your prayers. His parents are Jennifer and Bryan, and they have two other small children to care for as well. I will try to keep you updated on Brayden's progress.
Saturday May 31, 2008
What about this neuroblastoma disease? Earlier this month, some very important findings were released regarding this disease. A study revealed that neuroblastoma is linked to a genetic variant on chromosome 6. http://www.medscape.com/viewarticle/574174 Who knows what, if anything, doctors will do with this information, but it is a step in the right direction. Several children with neuroblastoma that I have been following and praying for have gotten their angel wings this year:
You may find it odd that I was following kids with cancer long before Nina's diagnosis. When she was first born, I was a member of an online birthclub for moms of babies born in December of 2003. One mother needed our support in a way that no mom ever should when her four month old daughter was diagnosed with a deadly form of Leukemia. Baby Allie only lived to be 9 months old. She had countless blood transfusions in her short life. The month she died, I drove past a blood drive near my home. I had never given blood before. I had always been chicken, but this time I knew I had to stop. When I was done, I felt like such a super hero knowing that my blood could potentially save three lives. I have been rolling up my sleeve regularly for nearly 4 years now. In 2005, I joined the National Bone Marrow Registy. Little Allie had a profound impact on my life.
Allison Leigh Scott December 17, 2003- September 13, 2004
During the first hours of Nina's "5cm Neuroblastoma" diagnosis, I found it cruel that I had all this prior knowledge about the beastly disease. How could I possibly sleep knowing what Nina could be up against? It was hard to breathe. Soon God answered. I realized that these other famililes had prepared me for this journey. I do not like to ask others for help. I don't like to impose, so I tend to take care of things on my own. From reading other parents' blogs, I knew I had to get my support system in place. It was time to call in our army. We made dozens of phone calls and sent out tons of emails. Offers to help poured it. We were never alone. Thank you for answering the call.
I am extremely thankful for all these other parents and their willingness to share their childrens' fight with cancer. I am grateful that God used them to prepare me for Nina's journey. I am also thankful that Nina's website is slow at times. What a blessing that there isn't too much to report on Nina! I pray it stays that way too. Boring it good!
Sunday May 11, 2008 HappyMother's Day
"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body"- Elizabeth Stone
My heart has been on a rollercoaster since becoming a mom. At times, it has been so full. I have seen God in my children's eyes and felt His love in their sweet little hugs. My heart has also ached with a pain so raw. Being a mom isn't easy, but what an awesome gift! I spent some time today looking through old pictures. Since I am the resident photographer, there weren't too many pictures of "Mother and Child," but here are a few that I thought I would share. Starting with Baby Lindsey:
Mother's Day 2004
I think Mother's Day is one of my favorite days. Mike goes out of his way to make me feel appreciated. He also allows me to slack off all weekend. He made a wonderful dinner tonight. I also love the little presents that Lindsey and Nina make at school. Nina gave me a book that her preschool class made called, "May There Always be Mommys". It was so sweet. Lindsey gave me this huge card that had a list of "10 Reasons Why My Mom is the Best!" I am going to save this and make Lindsey read it when she's 14 years old and finds her mom so embarrassing.
I go to bed tonight feeling so loved and appreciated. Thank you my sweet little family.
Friday May 2, 2008
We got the results of Nina's tests today, and everything came back normal. We are thrilled, thankful and relieved! Although Nina could do without the radiation exposure from the CT scans, I do find these little peaks inside her body reassuring. It is good to know that she truly is tumor free. If you've been praying for our little girl, thank you.
Thursday May 1, 2008
Although we won't get any results until tomorrow morning, I think we'll still call today, "Another One Bites the Dust." That old Queen song was playing on the radio in the lab as Nina was being stuck for her bloodwork . Another one down... Mike and I decided to fast this morning with Nina so that we weren't eating and drinking in front of her. Nina, who gets up every morning at 7:00 demanding her bowl of oatmeal or plate of french toast sticks, did fine on a breakfast of contrasting fluids. She didn't whine or complain one time. It was Mike and I who were grumbling in each other's ears about our empty bellies. After three cups of contrasting fluids, a finger prick, urine collection, an IV in the right arm, and being strapped to a machine for pictures, Nina survived another appointment like a champion. Another appointment bites the dust. Nina skipped out of the hospital with two large Hannah Montana stickers, a little pink bouncy ball, and a tiny bottle of bubbles for her trouble. We headed straight to Chick Fil A for food. Nina played in the indoor play area for a few minutes before we had to leave so that Mike could go to work.
Nina will continue to have CT scans every three months for a year. After a year, if there is no tumor activity, she will only have to be seen by the oncologist every 6 months and no CT scan as long as her labwork is ok. Woohoo!!!! Dr. Renalli said something else that I found interesting. He said a few years ago, kids with Nina's same exact diagnosis automatically received chemotherapy treatment. Only recently did doctors learn that not all ganglioneuroblastoma kids need chemo. Again, we are thankful that Nina has avoided chemo so far. Now we just wait...
Hopefully tomorrow's news will be positive and good. We have so much to be thankful for already.
Friday April 18, 2008
We just wanted to let you know that Nina's appointment with the oncologist has been set for Thursday, May 1st at 8:30am. She will be given a physical, have labwork drawn, and have a CT scan of the abdomen. We pray that she is as healthy on the inside as she looks on the outside.
Nina is so proud that she can finally swing on her own.
Thursday April 3, 2008
We are two months post-op now, and I would like to share an emotional video. It was taken two days after surgery. Nina had her catheter removed that morning, and she was encouraged to get out of bed. The only time that Nina cried throughout the entire hospital ordeal was when she had to get in and out of bed, and amazingly she didn't want help from anyone. She was healing from the two surgical procedures as well as the bone marrow biopsy/aspiration, but still her independence was fierce. At the end of the video, she turns back into a regular four year old, asking "Mommy, do you wanna way down with me?" Then she finds comfort from one of her little thumbs. I love this! It is so Nina!
It was terribly painful to watch our child endure so much, but we are so proud of Nina. She was so strong and brave evey step of the way. We pray that this tumor is gone for good. We pray that she never has to go through this again.
**Now if I could only figure out a way to share videos with you all without having to use a third party like youtube I'd be set!
Monday March 24, 2008
It was too cold to hunt for eggs outside, so the Easter Bunny hid eggs in the family room for the girls to find when they woke up. He also left some Easter baskets on the table where they eat their breakfast. Church was the most crowded I have ever seen it. Mike stood up throughout the service because he couldn't find a seat. How awesome that a new, larger worship center was built less than two years ago, and it is already filling up. So cool! "Build it and they will come." The cantata was amazing!
Mike's mom, Betty, came down from Cleveland on Good Friday and stayed until Sunday afternoon. Lindsey and Nina made a Bunny Cake with Grandma. This is a tradition that they started last year. They also colored and decorated Easter eggs. I wanted to share a few pictures from our Sunday. I hope you all had a wonderful Easter too. To God be the glory!!
Saturday March 22, 2008
We have had such a great week. I can't believe how quickly it has flown by. We celebrated Easter with Mike's family last weekend up in Cleveland. It was great seeing everyone and of course there was plenty of food. It rained most of the week around here, so we did lots of indoor stuff. We went on a tour of the Anthony Thomas candy factory with some of our friends. We saw a huge chocolate Easter Bunny that cost $250 and a gigantic Buckeye, made of peanut butter and chocolate with a price tag of $3,500. The girls were very interested in seeing how the candy was made, and they enjoyed the free samples at the end of the tour. Other than that, we went to the YMCA nearly everyday, and we hit all the indoor play areas in town. We went to a birthday party today for one of their little friends, and there was an Easter egg hunt in the basement. The girls were in heaven! We saw a lot of people this week that we haven't seen in a long time. It was great seeing and talking with each of you!
I took Lindsey and Nina to pick out Easter dresses on Wednesday, and they fell in love with the three dimensional mirror at the entrance of the dressing rooms. They would try on a dress and then dash out the door to twirl in front of the big mirror. Nina could not wait to get home to put on one of the dresses we had bought at Kohl's. She wanted to twirl around in the family room. She has worn a dress everyday since.
Here is Nina spinning and twirling in one of her dresses. We picked out another dress for Easter, but Nina LOVED this one so much and it was only $9.50 after my coupon. Worth every penny! I hope you have a wonderul Easter.
Monday March 17, 2008
Happy St. Patrick's Day!! We are on Spring Break this week, but we don't have any fantastic plans. We will be traveling to Virginia over summer break, and we are planning a return trip to Disney in the fall, but we will be laying low this week. Afterall, it is technically still winter, right?
A lot of people have asked how Nina feels about what she has been through, or whether she understands the cancer. Nina is a simple girl. She lives in the moment at hand and that's that. She doesn't worry about the next minute or the next hour. When she is faced with a challenge, she deals with it and moves on. Maybe this is how most children live their lives. Unfortunately, our oldest daughter, Lindsey, who is highly intelligent has never known that freedom. I swear she came out of the womb with a concerned look on her face. Lindsey's first grade teacher suspected and confirmed that Lindsey was gifted last year. Poor Lindsey understands all the consequences in every situation. She sees the big picture. She worries, and she lives her life almost too cautiously.I think the tumor had a larger impact on Lindsey than it did on Nina, but all in all Lindsey has handled this even better than we could have imagined. All those prayers really touched our family. We are super proud of both girls!!
One day I asked Nina if she knew why she had needed surgery, and she said "Because I pulled on my belly button too much."See how simplistic she can be?I decided to tell her the truth. I said, "Nina, you had a tumor and the doctors took it out before it made your body sick." I explained that some kids do get really sick from their cancer and they sometimes need special medicine which causes them to lose their hair. Nina has seen lots of hairless children at the oncology clinic so this explanation made sense to her.
Nina took the news just fine and in the days since, she has been doing surgery on her baby dolls and removing their tumors. Also, anytime Nina is wearing a white shirt, she becomes "Super Nurse" another game that she loves to play. Lindsey has been playing right along. They have a good time.
Here are their lastest surgery victims.
Saturday March 8, 2008
Thanks to the Blizzard of 2008, Mike enjoyed his first day off today since February 24th. It was great having him home. According to the news, Central Ohio averaged 20 inches of snow in 24 hours. Weren't we out enjoying the zoo just a few days ago? We are all anxious to see Spring, but the snow was lots of fun!
Thursday March 6, 2008
I'm just having a "feeling truly grateful" kind of day today. When Nina's pediatrician said the tumor was likely a Neuroblastoma, it was no stranger to me. I already knew of several angels that I had prayed for who didn't survive this disease. One of them was Christi Thomas: http://www.christithomas.com/Her mother's journal caught my eye, because the family was from Ohio. As a matter of fact, Christi got some of her treatment at the same hospital as Nina. I also remembered the little girl, Alex Scott, who started Alex's Lemonade Stand and raised over a million dollars for pediatric cancer research. Who could forget her appearance on Oprah before she died of Neuroblastoma at the age of 8? I couldn't believe that this disease was hitting so close to our home.
Today, I am so thankful that it was the less aggressive, less common, even less likely outcome.... a ganglioneuroblastoma. I know I've said it before, but thank you for praying for Nina. My gratitude just overflows. I will continue to pray for children with neuroblastoma and their families. I would love to do more. Lindsey said she would like to do a local "Alex's Lemonade Stand" this summer to raise money for the cure. Maybe we will. If anyone local would like to get involved with this then let me know : http://www.alexslemonade.org/ I just want to do something.
This is the piece of paper we left the pediatrician's office with after getting the news of Nina's tumor. Wow, do we have a lot to be thankful for!!!!!!!!!!!!!!!!!!
Tuesday March 4, 2008
Today was Nina's post-op appointment with Dr. King. He said that Nina was healing great and that he doesn't need to see her anymore. So Nina doesn't have anymore appointments until May. She is getting her eyes checked on May 7 with a specialist at the hospital, Dr. Bremer. He is also Lindsey's opthamologist. Nina did poorly on her eye exam during her 4 year well check up, so it will be interesting to see if she needs glasses like Lindsey. It is so funny, because neither Mike nor I have ever worn glasses. May is also the month that we follow up with the Oncologist and Nina will have her CT scans. So hopefully the rest of March and the month of April will be uneventful.
I had a few questions for Dr. King today. I asked him how many stitches Nina got during surgery? He said he did not know the exact number, but that it was a lot. He said she had more than 50 on the outside alone. He said there were 2 more layers of muscles underneath that were also stitched. I had no idea going into the surgery how severe it was going to be. I was so ignorant.
When Nina couldn't have anything to eat the morning of surgery, she asked when they would let her eat. I told her they might let her have something after surgery. All my experiences have been outpatient, so I had no idea that Nina's bowels would need four days to wake up from the anesthesia. That evening after Nina's surgery, a quiet tear rolled down her cheek and she whispered, "They forgot to give us breakfast." It broke my heart. Her mouth was so dry. Her lips were cracking, and I couldn't even give her a drink of water. That was my mommy low point.... But we got through it.
Here are Nina's before and after Belly Button shots (remember Dr. King also fixed Nina's umbilical hernia)
This use to be Nina's favorite toy. She loved to play with her "outtie" while she sucked her thumb.
Now she has an "innie." Not so fun for Nina anymore, but we think it's cute. I wonder if Dr. King would mind throwing in a tummy tuck for mommy :-)
Monday March 3, 2008
Thanks to those of you who have been praying for Brenna. I got this email from her parents tonight:
Our prayers have been answered! Brenna’s biopsy results came back and the lump is benign!! We have an appointment on Thursday to have the outer stitches removed and to discuss with the ENT what caused this….what is going on with her lymphatic system? Thank you SO much for all of your kind words and prayers through these past couple of weeks. Brenna has been such a trooper this week. Even when she was in pain, she would still try to smile for us. Liam and Ahlaina have been really taking care of her and have been so sad that she has a “boo-boo” on the back of her neck. We will keep everyone posted, but continue to keep her in your prayers! Thank you so much and feel free to pass this along to anyone who you asked to pray.
Kathleen and Jeremy
URGENT PRAYER REQUEST Please pray for another family here in Grove City going through a very scary time. Yesterday, 5 month-old Baby Brenna had a biopsy done at Children's Hospital. Doctors removed a large swollen lymph node from the base of her skull. Her parents, Kathleen and Jeremy, are waiting to hear the results of the biopsy. Kathleen was one of the kind ladies who brought our family dinner after Nina came home from the hospital. Please keep them in your prayers.
Sunday March 2, 2008
Five weeks ago when we got news of the tumor, we couldn't even begin to imagine what our lives would look like right now. Would Nina be in the middle of chemotherapy treatment and miss the beauty of Spring and miss playing with all her friends? Would we have to shelter a weakened immune system from all the things that Nina loves? When we heard that malignant cells had been seen under the microscope, it was hard to imagine where Nina would be today.......
The Zoo!!! What a gift that Nina has been able to get back to her favorite activities so quickly. It was such a beautiful day that I took the girls to the zoo after church. It wasn't crowded at all, and the animals were ready to pose for pictures. We had a great time. We wished that Mike could have come too, but he is in the middle of outages at work, and he is putting in a lot of time. Mike has worked over 95 hours this week. He has been putting in 14 hour days, seven days a week. This will continue through the rest of the month and also a week in April. Mike is home now. He is reading a bedtime story to the girls in Nina's room. I can hear them giggling. They are so glad to have their Dad home. Here are some pictures from our wonderful day!
Nina on the elephant sculpture.
Lindsey volunteered to give me a stroller break.
Mr. Tiger was so photogenic today!
Such a beautiful creature!
Lindsey and Nina on the tiger sculpture.
Thursday February 28, 2008
We did get a call from Dr. Kebe's office yesterday asking us to come in. He said Nina's reflux was grade 2 on both sides. This was good news. Nina has an excellent chance of outgrowing this without needing surgery. I have the prescription for Nina's antibiotic. We will start that tonight, and she will take it every night before bed for 12 months. Oh my goodness, that is a long time! Dr. Kebe said he will send Nina for another ultra sound and VCUG at the end of the 12 months. Hopefully her kidney reflux will be a thing of the past.
It is amazing how things have changed during the past few months. Both girls have been so healthy. On their yearly check ups when the doctor would ask if we had any questions or concerns, there was rarely anything to discuss. Now Nina is being monitored for cancer, and she is being treated for kidney reflux. Life is so unpredictable!
Wednesday, February 27, 2008
Married for Nine Happy Years!
February 27, 1999
Tuesday, February 26, 2008
The test (VCUG) was no fun at all, but Nina did great. Her little face turned as red as a tomato, but she didn't cry. A man named Dr. Bates performed the test. He pointed at two white lines on the screen and said, "That's reflux." Nina has reflux in both her right and left kidneys. Here is a link that probably explains kidney reflux better than I could:
We don't know how severe the reflux is yet, but kids with milder cases usually out grow this in a few years. In the meantime, Nina will have to take daily antibiotics for 12-18 months. The antibiotic is used to protect the kidneys from urinary tract infections and future scarring during this wait and see period.At the end of the 12-18 months, Nina will have another VCUG (oh joy!) to see if she has outgrown the reflux. If she still has it, then surgery is a possibility.Hopefully we will find out more specifics on Nina's case. The pediatrician is suppose to give us the official diagnosis, and we are hoping for a call tomorrow.
It's disappointing that Nina has another condition to deal with, but we know this reflux is nothing less than a blessing. It led doctors to Nina's tumor. Kidney reflux may stink, but we are so grateful for it. Again, we have God to thank.
Monday, February 25, 2008
Nationwide Children's Hospital is having their annual book drive. The girls went through their bookshelves looking for gently used books to give away. We were very proud of Lindsey who is really attached to her stuff and rarely parts with anything. I also ordered some brand new books online to donate. Nina and I plan to deliver these books to the hospital tomorrow when we go in for her test. We will let you know how the test goes….
Friday, February 22, 2008
Nina has been doing fantastic. Her incision looks great, and her new "innie" belly button is so cute. She has been feeling good and staying active. We could not be more pleased with how well her surgery went and how smooth Nina's recovery has been. It's true....Dr. King is a great surgeon, and God is good!
The last time we saw Dr. King was the day Nina was discharged from the hospital. He gave her the ok to go home. His final words as he walked out the door were, "Make sure you get that VCUG scheduled to find out why she has been having all those urinary tract infections." The VCUG was the test that had been canceled once the tumor was discovered. The Oncologist, Dr. Ranalli, suggested we give Nina a break from the hospital and testing for a few weeks before rescheduling the VCUG. We agreed to wait, afterall the VCUG is a test that even Nina will probably hate. I have heard lots of unpleasant things about it. We had no problem putting that one off.
I guess the honeymoon is over.....We will back at the hospital next week. I took Nina to the pediatrician yesterday. We were sure she was having another urinary tract infection. Although she was able to use the restroom some, she kept saying she felt like she had to pee, but nothing would come out. The doctor tested a sample of her urine. It came back negative, but they are sending it to Children's hospital to do a culture. In the meantime, the VCUG has been scheduled for Tuesday morning the 26th at 9am.While I am dreading the test, it will be good to have answers. If Nina has kidney reflux or some type of obstruction, it will be good to know. Then the following Tuesday, March 4th, we will be back at Children's for Nina's post-op appointment with Dr. King. Thank goodness the hospital is only 15 minutes from our home. We met several families who have to drive three or four hours to get to Children's. We have it good!
Thanks again to those who are keeping Nina in prayer! We are so thankful.