History

Friday, March 12, 2010 10:05 PM CST

Very happy to report everything is going well for Anna and family. Seven years has flown by.

Hopes and prayers for everyone touched by cancer.

Thursday, October 22, 2009 4:30 PM CDT

Dear Family and Friends,

It's been a long time, which is good, meaning Anna's been doing well! But we did learn last week after a chest x-ray for an illness (no pneumonia, most likely the flu and she's better!) that Anna does need an MRI just to clarify an area on the x-ray.

That is scheduled for October 27th.

Thanks for checking in,

Sharon

Saturday, October 11, 2008

The Rezac's are doing well!

Anna started kindergarten and just turned 6, it's hard to believe!!! She's obsessed with dragons, dinosaurs and insects (and wearing dresses everyday!). Health wise she is doing great and has moved to annual check ups with long-term care and neurology.

Lucas started 4th grade and is learning to play the trumpet! He's still obsessed with legos (for 5 years now!) as well as reading and playing Wii.

Anna, Lucas, Mike and myself send many thoughts and prayers to the fighters and their families. You are always in our minds and hearts.

Sharon

Tuesday, April 22, 2008 7:52 PM CDT

It's hard to believe summer is just around the corner!!

We are VERY happy to report that Anna is sleeping much better now, thanks to going back on her old medication. Though we'd prefer no meds, getting sleep and functioning well during the day are more important!

Sending thoughts and prayers always.

Monday, January 28, 2008 8:36 PM CST

The year has gotten off to a good start. Anna is a rambunctious, friendly, high-spirited "spitfire" of a five year old. She makes us laugh and cry and we're so thankful for her. We are working hard to help her sleep through the night and in her own bed.

Lucas is turning into quite a young man despite his sister's pestering and begging, "Lucas, play with me" about every 10 minutes. He's patient most of the time and enjoys playing with Anna on the weekends. They're a good pair.

Sending thoughts and prayers to our many friends.

Monday, November 5, 2007 9:33 PM CST

Thinking of our many friends made through this experience and wishing you the best possible Holiday.

Tuesday, October 16, 2007 10:41 PM CDT

Wow, it's been a while! That's a good sign. We had a good summer and Anna just turned five!

Both kids are very excited for Halloween. Anna plans to be a Mermaid (after 1st choosing a princess, a lion and an angel!). Lucas will be a Quidditch Harry Potter with broom and all.

Anna adores her big brother Lucas and emulates him every chance she has (often against our preference!). But they're a good team and we are blessed to have them everyday.

Though Anna continues to struggle with sleep disturbances, she's a healthy, strong 5 year old with an outgoing personality. On Thanksgiving, we will celebrate 5 years past diagnosis, it will be a very good day!!

We continue sending prayers and strength to the fighters and support to the angel families. Keep the faith.

Tuesday, June 26, 2007 9:02 PM CDT

Hello and thank you for checking in with Anna and our family!

We are enjoying summer and especially swimming. Anna is quite the little fish. She and Lucas love playing catch under water with their "torpedoes".

We enjoyed a fantastic trip to Disneyworld after school was out and Anna's new favorite ride is "Tower of Terror"! She's quite the roller coaster fanatic. And yet, she's still scared of the witch in Snow White (creepy though she is!). Two photos from our trip are in the album.

We are also pleased to say that Anna's most recent MRI (head) for continuing, frequent headaches was negative. We're still playing with the sleep issues, but it's improving.

Sending many thoughts and prayers to all the cancer fighters we know, and support to the angel families. Keep the faith.

Sunday, January 21, 2007 8:02 PM CST

Thank you for visiting Anna's page.

Happy New Year, we hope it will be the best it possibly can be for you!

As life continues and Lucas and Anna grow (and fight) and play, I often reflect on what's important. The life we have, the chances we're given and what we do with those opportunities. Finding ways, little ways, to help those who need it most. Raising awareness of neuroblastoma just by sharing our story and talking. Helping the amazing heroes who work tirelessly organizing fundraisers for critical research.

Thank you to those who dedicate their lives to fighting neuroblastoma. Many prayer's and blessings to the children battling this disease every minute of every hour of every day, and to people everywhere struggling against cancer and all of the challenges it brings.

Sunday, November 12, 2006 8:47 PM CST

Thursday, October 26, 2006 9:32 PM CDT

Hello!

Thanks for stopping by. We are all doing well and excited about the fun treats (and tricks). Anna will be dressed as Tinkerbell this year, and Lucas will be a robot (Dad's homemade costume!).

On the health front, Anna is sleeping better and on the eve of her 4th birthday (Sept. 21) she actually started to sleep in her own bed!!! This is a huge milestone and we are ALL so thankful for that. She started a new medication, in addition to the high dose iron, and that seems to have helped with the leg/arm/body jerking at night. We invested in a night camera since we no longer have her next to us to see how she's sleeping. She is still waking up, sometimes crying, sometimes just sitting up in her bed, staring. But she lays back down more often than not and goes to sleep. So progress has been made!!!

In other news, we learned our oncologist is switching hospitals, so we will be following her. Since Anna is not on treatment, this is a fairly easy switch. We will still be at our current neurologist and will go between the two facilities.

Our continued prayers go to the many warriors and fighters, as well as angel families. Faith and hope.

Sharon

Thursday, August 17, 2006 7:15 PM CDT

Thanks for visiting!!!

On the fun front, we recently returned from a 2 day getaway to the Warren Dunes in Michigan. It was a GREAT time and the kids LOVE the sand! It took us 3 hours to clean it all out of our car when we got home, but well worth it!

On the medical front, Anna is taking ferrous sulfate (a high dose of iron) to try and raise her ferritin levels. It's pretty nasty and we're trying to help her keep it down. It is to improve her "Periodic Limb Movement Sleep Disorder" or PLMDS. We're crossing our fingers, but it takes 2-3 months to see a difference. She still "thrashes" in her sleep and awakens screaming multiple times a night.

We have our routine clinic check up next Tuesday. We're happy to report that Anna is doing very well otherwise. She seems to be growing overnight. And, she's learning lots of great stuff (especially from her 7 year old brother Lucas) this summer...like burping, running around like the tazmanian devil and playing cars.

We hope everyone's summer is going as best as possible and keep the fighters, angels and their family's in our prayers.

Sharon

Monday, July 17, 2006 2:25 PM CDT

Thanks so much for checking in!!!

We are enjoying summer, especially swimming at the pool. It's about 98 degrees out today, so we will be heading over there soon!

Anna had her sleep study and the results suggest a "partial arousal disorder" and "periodic limb movement disorder". So, she partially awoke 17.5 times per hour and had "limb movements" (leg jerking/flailing) 18.7 times per hour. The doctor started her on iron supplements, as low iron can cause the limb movements (her ferritin was 14 and doc would like it at 50). So this confirmed what we've been saying for almost 4 years now, the kid doesn't sleep well!! And now, she's always in our bed every night so we see it frequently with feet in our faces and kicks in the back. We really hope the iron will help. We see the sleep doc again 9/28.

But there is good news: the sleep apnea has resolved with the adenoid/tonsil removal!! She didn't stop breathing at all during the study. Yeah for that!

In the meantime, Anna will continue enjoying swimming and preschool. And Lucas is also loving swimmng and has finished vacation bible school and lego camp. He's now in "Gym Quest" camp, playing games and sports. All in all a busy, fun summer so far.

This weekend marks the anniversary of losing our dear friend Missy to brain cancer. So we toasted Missy last night and send prayers to our many friends fighting cancer. And we wish comfort to the angel families.

Sharon

Wednesday, April 26, 2006 8:19 PM CDT

Hope everyone is getting out and enjoying the warmer weather...we definitely have been. Anna and Lucas have both been thrilled to play outside, in the sandbox on the swings and ride bikes. It's a very welcome change of seasons. Winter seemed longer than usual this year....

Miss Anna is still full of the devil. She especially enjoys getting her brothers attention in ways he especially dislikes. Siblings have such fun!

On the health front Anna has been eating A LOT ever since her surgery. She's grown incredibly and she looks good. She still struggles with sleep woes...nightmares, crying and insisting on sleeping with us (or half sleeping). This results in daytime irritability in Anna, Mommy and Daddy!

The follow up sleep study is scheduled for this July. We postponed for 6 months, hoping the sleep troubles would stop after the surgery, but since they've recently intensified, this seems our next step. Our hope is to rule out any other possible medical causes for her sleep woes and take it from there.

She is otherwise doing very well and doesn't see her oncologist again until August. Wishing everyone a happy Spring/Summer and sending prayers to the fighters and angel families.

Friday, February 3, 2006 1:22 PM CST

Hello!

Happy Valentine's day. We suspect Anna thinks it's like a birthday...despite our best efforts to explain otherwise. And, she keeps telling everyone she meets she's having a birthday, which I guess is technically true, but not for another eight months! Oh well, she's such a joy!

She's been up most nights again, though not in crying fits, but just not sleeping. We find the lights blazing downstairs, toys strewn about, food pulled out of the cupboard. And, she gets up at 6am or earlier. She has had a URI since Xmas, despite a round of antibiotics. We see the onc. again in March. We've seen the family doc twice in Jan. Winter is so fun.

Lucas and Anna continue to ask when we'll be going on the Disney Boat again. When I explain it won't be for a long time because we have to save, Anna will find a penny, hand it to me and say, "here Mama, now we go on boat?" She cracks me up!

Thanks for checking in, we are sending continuous prayers to the fighters and angel families. Sending strength and love always.

Sharon

Monday, January 2, 2006 12:52 AM CST

Happy New Year!

We hope everyone had a wonderful holiday season. We enjoyed being home and playing with lots of new toys....thanks everyone!

Anna continues to ask to go "back on the boat" as in the Disney boat. She doesn't understand why every week can't be a vacation (ha ha)!

Lucas and Anna are enjoying each other's company and will miss each other when school resumes tomorrow. And I know we will all miss having Daddy home (he's let me sleep in everday!).

Looking forward to a quieter January/February. Sending daily prayers and blessings to the many fighters.

Sharon

Monday, November 28, 2005 6:01 PM CST

We just had Thanksgiving and what a day of thanks it is.

For us, it is a very momentous occasion, as it marked the third year since Anna's diagnosis with cancer. In so many ways, it seems like so much more time has passed since those dark days. Anna has changed so much, it's hard to fathom.

We are so thankful to have Anna healthy and happy. We are so thankful for our wonderful son Lucas, to keep us on our toes and laughing. We are so thankful to have our family and friends to share life with.

We just returned from a trip to Disneyworld which included a 3 day cruise. It was incredible and exhausting. I will add photos soon, but suffice to say, the kids are officially spoiled forever!!!

Sending many wishes for healing and comfort to the other families battling or recovering from cancer. And special blessings to the angels of cancer and their loved ones.

Wednesday, November 2, 2005 3:37 PM CST

Happy November!!!

The kids had a great Halloween....Lucas could barely contain himself. He led the pack from house to house. And Anna was so happy to be out and about, wearing her horse costume. Though she was going to be tinkerbell (see photos in album) she changed her mind and wore last year's costume. Sorry, we didn't get photos because she slept so late. Our friends got some so we hope to get copies!

She's feeling much better after the tonsil/adenoidectomy. Now we just hope she'll start sleeping better...once she's fully healed. The doc said the adenoids were blocking 75% of her airway. She's happy to have that over.

We're looking forward to a trip to Disneyworld coming up...the kids can barely contain themselves.

There are some new photos in the album from Anna's 3rd birthday. We're thinking of you, thanks for checking in.

Sharon

Sunday, October 23, 2005 7:44 PM CDT

Hello and happy haunting!

Anna's adenoid/tonsilectomy went smoothly Friday, 10/21 and she came home late Saturday night. She was a bit fiesty and the doctor delayed our going home because she refused to drink anything. She was not a happy camper but she seems much better today.

At one point, she knocked a full glass of grape juice all over me, her bed and the floor. We bribed, cajoled, prodded and pleaded with her to drink so we could go home. But she was having none of it. For a while, I thought her head would spin around!! I don't blame her. I recently had a strep like sore throat, took narcotics for pain and wanted to stay in the fetal position for two days! I think it was fate because the illness gave me more patience for Anna.

We stopped her sleep meds as of last night, so we'll see how the week progresses. The pain killers make her drowsy, so we hope the withdrawal won't be bad. Pray she doesn't need them anymore!!

Thanks for all of the well wishes. We continue to pray for the many warriors fighting cancer. We think of the angels often and know they're watching out for us all.

Sharon

Thursday, August 18, 2005 8:06 PM CDT

Well hello,

Thanks for checking in! Anna had her ear/nose/throat doc appointment and we will be having the tonsils and adenoids removed. It's scheduled for September 30th at Children's Memorial.

Because she has sleep apnea, they will be keeping her in PICU the first night and if all goes well, she'll get to come home the next day. Cross your fingers (and toes) that this will resolve her (and our) sleep deprivation.

In the meantime, she has been entertaining us with her routine appearances "a la nude" except for some type of fuzzy slipper or other shoes. This and her constant episodes of painting with mom's makeup or washing her dry hair with shampoo while clothed have kept us in stitches.

Hope everyone is well, sending prayers and hugs.

Sharon

Sunday, July 31, 2005 11:35 AM CDT

Hello and thanks for checking in!

First, I have to share very sad news, our dearest friend Missy has passed away. She fought an amazing battle against brain cancer. Her spirit and love live on through her remarkable husband Seth, beloved kids Lily, 6, Owen, 2 and wonderful family. I see Missy in Lily & Owen's eyes and feel her surrounding them. Personally, Missy helped me to see humor in daily life and made me want to be a better mom by her own example. We will miss you more than I can express Missy. I know you are watching over us all now.

As for our precocious Anna, she just completed a sleep study with interesting preliminary results.

The sleep doctor believes Anna has an obstructive breathing disorder. He didn't call it apnea, but my guess is that's what it is. Anna stopped breathing completely 84 times, and had partial airway blockage 153 times. Her brainwaves had "blips" at these times which he thought might be seizures. But after reviewing her history, he suggested it was her shaking her head to clear her airway. When Anna was 6 mos. old, the headshaking in sleep was the first sign that something wasn't right.

Her dream sleep is interrupted by the breathing cessation and we believe this is causing her chronic night wakings and daily irritability. We are seeing an ENT August 15th to have her adenoids/tonsils checked for possible removal.

If the ENT doesn't suspect the adenoids/tonsils, then an MRI of the chest and neck will be done. When the tumor was removed, it was pressing on her main bronchus (breathing tube) and this may have caused a narrowing of the airway.

We are cautiously optimistic that a simple adenoidectomy/tonsilectomy will solve her almost 3 years of sleep deprivation. We are also relieved that it's not seizures!! She was a real trooper for the test. She had wires all over but thanks to the Toy Story II DVD playing while getting hooked up, she got through it. Check out the pictures in the "view photos" link.

Beyond all this medical stuff, Anna will be honoured at Wrigley with other kids who've had/have cancer. We are thrilled for this opportunity to raise awareness and be on Wrigley field!!! Thanks for the constant support, please send your prayers to Missy's family.

Thursday, July 14, 2005 9:08 PM CDT

Hello, hope everyone's summer is going well.

Anna visited oncology clinic this week and she was a real trooper. Everything looks good, we re-did the messed up blood tests for immunology and received a referral to a sleep specialist. We hope to set up an appointment with them soon.

Anna and Lucas are both enjoying the summer. They had their first camping experience last weekend and both loved it. They loved being dirty and swimming a lot. They loved playing with the other kids. Anna also loved ripping her shoes and shirt off every chance she got....she was very entertaining!

We've been enjoying the pool, camp and parks. Anna and Lucas just started a camp at our local wellness house and got to see snakes, turtles and lizards up close. They even pet the snakes.

Please send prayers to our dear friend Missy and her husband Seth and kids Lily and Owen as Missy transitions. She is amazing and has a wonderful, loving family. Prayers to everyone fighting cancer.

Sunday, July 3, 2005 6:10 PM CDT

Hello,

We hope everyone has/had a good Independence Day. We are enjoying playing outside and going to the pool. Anna and Lucas are both loving swimming.

Anna is again having more sleep troubles. We upped her medication, but it hasn't helped too much. She's irritable frequently and extremely clingy. We don't know why, but think it's beause she's sleeping less. She's learned to climb out of her crib and doesn't fall back asleep like she used to in the morning.

She's also had a hoarse voice for a while, her voice has gotten a little lower. It's unusual, but she hasn't been sick so who knows.

We see oncology July 12th. All else is good, hope you're enjoying summer.

Please send prayers to our dear friend Missy whose battle with brain cancer is coming to an end. Pray for peace for Seth, her husband and Lily and Owen, her beautiful kids. Most of all, pray for Missy's pain to be relieved.

Sharon

Sunday, June 5, 2005 11:49 AM CDT

Hello and thanks for checking in!

We were unsuccessful in attempting to wean Anna from her sleep/mood medication. We managed to get to half a dose, but the first night we stopped, the night crying fits returned. We tried for two more nights, but each night got progressively worse. The last day, she couldn't recover from any minor setback and was a basket of tears for eight hours.

We gave in the third night and gave her the medication. She's doing much better again. It seems there is definitely some other issue with her sleep, beyond "behavior". We'll be checking with the neurologist shortly to set up a sleep study. I feel so bad for her when she's like that. If we could just figure out what's going on.
She's not suffering cognitively since being on the medication for 8 months now. She was recently re-evaluated and she's at age appropriate level now. That's great news!

We'll get Anna's botched blood tests redone in July. Until then, we'll be keeping things "normal" at home.

We continue to think of our dear friend Missy fighting brain cancer. She's in our hearts always, please send her a prayer. Please send prayers to the many newly diagnosed kids and relapsed kids. You're always in my thoughts and prayers.

Sharon

Tuesday, May 24, 2005 11:16 PM CDT

Hello!

Anna is feeling much better! The antibiotics seem to be working. We also got some bloodwork back. The lymphocyte levels and flow cytometry looked good. Unfortunately, they were unable to do the immunoglobulin and titers testing they wanted. So, we'll have those done in July when we have a return visit to oncology. She'll also have her catecholamines checked, which haven't been checked since the beginning.

Anna is in great spirits and we are cautiously trying to wean her from her sleep medication. She's more irritable and tantruming quite a bit more. But this may take a little getting used to for her. So far, she hasn't had any middle of the night crying, so we're keeping our fingers crossed.

Thanks for the ongoing support. Please say an extra prayer for our dearest friend Missy whom is continuing her battle against brain cancer. She is a true warrior. Hugs to all.

Friday, May 6, 2005 3:40 PM CDT

It's been a while since we've updated. Anna had her oncology and immunology appointments this week. Her oncologist ordered a sinus CT & chest x-ray because of recurrent sinus/ear infections. We had that yesterday and are awaiting results. We also saw an immunologist yesterday whom ordered a bunch of bloodwork to rule out any immune deficiencies. We'll have more results in a week or so.

Anna had a different type of IV sedation this time. Anyone whose seen their child sedated knows that icky feeling it gives you. But when Anna first woke up, she was hallucinating. I've never seen her act so "stoned" before. We couldn't help laughing a little...she was waving her arm in the air and studying her hand. She was trying to grab "nothing" in the air in front of her. She missed her mouth several times trying to get in an animal cracker. She was totally loopy. She is much better today...no more drunk walk. She was a real trooper. They got the IV with one poke (thank goodness!) and she didn't fight the nurse, she just laid there sobbing. We hope this is it for a long time!

We are otherwise looking forward to warmer weather and will enjoy a picnic lunch on Mother's Day at the Arboretum.

Sending many prayers to all of the warriors we know.

Monday, March 21, 2005 10:04 PM CST

Oh how time flies!

We are looking forward to Spring weather. The kids are excited because we will be starting a vegetable garden this year, or as Lucas calls it, our own farm!! He originally intended to plant the entire back yard as a corn field, but we've managed to talk him out of that (phew!).

Lucas turned six this month and is very proud of this fact. Anna has enjoyed his birthday partys and keeps saying, "me too" as in, my birthday too, where are my presents?

Anna is still doing well! She has had a cold/virus thing for about two months now. I'm suspecting it's something either allergy or immune system related. We've been concerned about some tremors in her hands in the morning, and some days of extreme irritability and clumsiness. We're chocking it up to the illnesses at this point.

We see the oncologist May 5th and the Immunologist May 23rd. The sleep medication can cause tremors, so we may look into the dosage. We know we need to figure out the root cause of the sleep disturbances, but doing a sleep study on a 2 1/2 yr. old, with her issues, is unlikely to yield results (especially since we doubt that she'd even sleep with the various hook ups needed for the study!). So we're biding our time.

Many prayers to the incredible warriors we know or know of, fighting neuroblastoma. You are our champions. Please also send prayers to our dear friend Missy as she continues her battle with brain cancer. She is such a special person and we love her so (a link to her story is below). Keep the faith!

Friday, February 18, 2005 7:10 PM CST

It's hard to believe March is almost here....the time is flying!

We've all been fighting off the flu at the Rezac household. Anna also has an ear infection. Lucas is still coughing, but gratefully returned to school after being off for five days. And yes, Mom now has it as she writes this, so it will be brief.

Our visit with the neurologist went fine, though he still wants us to see an immunologist. That's scheduled for May 23rd (the soonest we could get an appt., and our 13 year anniversary!). Anna has been struggling with sleep as of late, due to the flu and earache I'm sure. But she is otherwise, a full blown, tantrum throwing, my way or the highway, dramatic princess two year old. We're loving every minute of it (though her brother would heartily DISAGREE...his latest complaint "she's annoying me!"). That's a complaint we can handle!

We think of Missy often as she fights a battle with brain cancer. Please send her and her family your prayers as we do everyday.
Love to all of our family and friends and the many people fighting cancer.

Friday, January 14, 2005 7:44 PM CST

Hello and Happy New Year. It's hard to believe it's 2005. We are well and look forward to warmer weather (yes, quite a long wait.)

We're still working on getting that Christmas tree down, hopefully, this weekend. Everytime I mention it Anna cries "more Christmas". She definitely knows about Santa and presents now!!

Lucas is 6 soon, I'm amazed. I look at him and think he was a baby yesterday. He told me he wants to send a birthday cake and candles to the children affected by the Tsunami. He wants to help them feel better. It's so horrific, we're sending many prayers there. Lucas has been going to the Cancer Wellness House the last few weeks. They provide support to families affected by cancer. Lucas likes it and appreciates the one on one time he receives there.

Anna is doing well, managed to get through the stomach flu and now is fighting a cold. Yeah, normal childhood stuff! Her speech is growing by leaps and bounds. She uses three words at a time and we understand her. She's really enjoying her group therapy. Of course her favorite parts are putting on lotion and snack time. We're also working on helping her through the latter half of the day. She gets very irritable and cries a lot. She seems tired, but she is still sleeping far better with her meds. And we're working on her sensory issues. Getting her to eat at the table is a challenge, but I'd guess it is with most two year olds!!

Please send many prayers to our dearest friend Missy who has been and is fighting a heroic battle with brain cancer. And thanks for the warm wishes. Love to you!

Wednesday, December 29, 2004 4:51 PM CST

Hello!

We hope everyone had a wonderful holiday season. We are looking forward to a New Year and continued health. Anna and Lucas had a great Christmas, Santa must've thought they were very good this year. We're considering a trailer home to live in, since the toys have now officially taken over our home (ha ha).

Anna is continuing to do well and her speech is almost right where it should be! She's made remarkable progress. She still tends to fall apart from dinner to bed time, but the rest of the day is great.

Lucas is doing well too, but misses school (he's not the only one, ha). They're enjoying their many toys.

Anna returns to the neurologist at the end of January and the oncologist in April. Many blessings to everyone, and please keep sending prayers to our good friend Missy. Much love!

Friday, November 26, 2004 10:15 AM CST

Today marks two years since Anna's diagnosis and surgery to remove her cancer. Today marks an incredible milestone for Anna and our family. Two years ago today was the most devastating day in our lives. Today is a blessed and bittersweet.

We are blessed with the sweetest most heartwarming two year old girl whom is doing very well. We are blessed with an incredibly loving and entertaining five year old son. We are blessed with a supportive, helpful family. We are blessed with incredibly loving and caring friends.

I am crying tears of joy over Anna's special anniversary today. I am also crying for our dearest friend whom has been and is fighting a heroic battle with brain cancer. Please send your thoughts and prayers to Missy. It is a bittersweet day in more ways than I could convey.

Our family has so much to be thankful for, and it's such an appropriate time of year to give thanks. We continue to pray everyday for the incredible children and adults whom are fighing cancer. They are the most heroic, courageous people we know. And we love you.

Thursday, November 11, 2004 1:27 PM CST

Hello!

Wow, what a crazy couple of weeks, again. We've finished up seeing two different oncologists and two different neurologists at two different large institutions for opinions. Anna's extensive blood test results came back good (yeah!). And, she is doing very well with her new sleep medication.

She's communicating her needs better, talking in two word utterances and seems pretty darn happy (she's still an extra appendage of mine at dinnertime, but that's a far cry from before)!! And, she's taking to her new play therapy group very well. We're happy to get her in more social situations. Her new "school" as we like to call it is perfect for this.

Given all of these factors, the consensus is that we will not be initiating any further treatment at this point. It's a very scary decision to make. We will watch her diligently and if there's any signs of backsliding or recurrence of a PNS, we will initiate more aggressive treatment.

Anna is also officially done receiving MRIs for the neuroblastoma. We'll be doing 6 month follow-ups with her oncologist and similar checks with the neurologist. This is great, and also scary. After a scan, we'd have that reassurance that she's all clear. But this is what her protocol is and the liklihood of the cancer returning is like 1%. YEAH!!!

Just pray for us that this is the right course to take. Thanks very much, we love reading your "GUESTBOOK" entries! Hope everyone has a Happy Thanksgiving!

Monday, November 1, 2004 8:55 PM CST

Hello, hope everyone had a great Halloween!

We enjoyed it despite Anna's insistence on eating the candy immediately!!! It was a little overwhelming for her. But, Lucas ran from house to house...he had time to sit down and wait for the rest of us to catch up between houses!

Anna is still sleeping 100etter. And, she's learning new words and putting two words together too. Sometimes we can't really understand her, but it's clear most of the time.

We saw a doctor at Children's Memorial and had several blood tests and a urine test done. A different type of immune system problem was raised, something called A.D.E.M. It sounds similar to the OMS in symptoms and workings, but isn't necessarily a chronic condition. I'm still in the research process and awaiting the latest test results.

They want Anna to see a slew of other docs, including a Pulmonologist to check her actelectasis, an Immunologist to explore immune system problems and their Oncologist. Needless to say, things will be very crazy as we go to all of these appointments over the next month. We still have one other second opinion coming up next week at a different institution.

Anna just started a play therapy group and the first day went great!!! She seemed to really enjoy her new "school" and loves that she has school now too, just like her big brother. Thanks for the updates and guest book entries, we love reading them. All the best!

Sharon

Wednesday, October 13, 2004 3:12 PM CDT

Anna is still doing much better on her new med. She went a record 21 nights in a row sleeping through (or at least waking but falling back asleep on her own!!!). The streak has ended a bit the last 3 nights, but she's still able to get back to sleep.

It has made a HUGE difference for her. She is talking tons more, has lots of new words and some phrases (her favorites being "no no no, mine and I do"). She just had her 2 year check up and she's 28 lbs. and 35 inches and doc thinks she looks great!

We've seen one other specialist about the OMS and he suggested a couple more opinions. Her appointments have been changed (with local neurologists) to 10/25 and 11/4. We look forward to hearing their thoughts. But Anna is doing so well right now, we're feeling much better about the situation.

Hope everyone is enjoying Fall, take care!!

Wednesday, September 29, 2004 8:33 PM CDT

Well, Anna had an incredible family birthday party on Saturday the 25th. I still can't believe she's 2!!!!! She received some great dress up shoes, jewelry, make up and clothes. She has slept in her new fuzzy slippers at night and worn her new pink polka-dot rain boots every day! She's a diva!

Anna is still sleeping through the night on the new med and we're so happy, and SHE'S so happy! She is fighting off a cold right now and some of the irritability and clinginess is back after her nap. This is a little unnerving, we're always concerned about a paraneoplastic syndrome and injury it can cause. But she's great the rest of the day, so I say it's just the cold.

We saw one great specialist Monday and were encouraged by his initial feedback. We see another next week, so will have more updates then too.

Thanks for keeping us in your thoughts and prayers, its always encouraging. I know Anna will really appreciate the guest book entries shen she's older!!!

Tuesday, September 21, 2004 1:38 PM CDT

Today is Anna's second birthday! Happy birthday to our Anna Banana! Lucas really thinks her name is Anna Banana Rezac!

It has been a long, crazy two years. We are so incredibly thankful for our beautfiul baby (guess I can't call her that anymore, but I will!). She is so strong and sweet. She's doing incredibly right now, thanks to a new med. She's slept through the night now for 10 days in a row!!! She may cry a little, but falls back asleep on her own. She's in much better spirits as a result and has really started to grow her vocabulary.

We have lots of appointments coming up at several institutions in the area and we are anxious to get their consultations. We hope to decide on the next treatment for the PNS soon. Right now we're just so happy to have our little girl back to herself.

Anna is going out to dinner tonight so everyone can sing to her (she's already been sung to five times today and it's not even 2pm!). Then she's having a big family party this weekend. She's been practicing saying "two" for a month. She's also been practice blowing out candles, so she's ready!

Thanks for the many well wishes!

Sunday, September 5, 2004 12:59 AM CDT

We are happy to report that Anna is finally feeling better after her very difficult lumbar puncture. She's walking and running and hopping and jumping again! She's caught a cold and we're watching her closely, but so far she's handling it well.

I'm still researching the Paraneoplastic Syndrome (PNS, broader family of OMS, Opsoclonus-Myoclonus Syndrome) and are anxiously awaiting Dr. Pranzatelli's report. I've looked into several doctors to determine whom will take care of Anna locally and we hope to find someone soon.

We go back and forth daily on whether or not to treat Anna, given the mildness of current symptoms. It appears onset was March of '03 when she had involuntary head-shaking (like saying no-no) that would worsen before sleep and during sleep. This occurred four months after her resection. An EEG done then and recently showed no seizures. She was six months old and not crawling or sitting up yet. We don't recall any other motor trouble or dancing eyes. We reviewed every video we have from that time, and found head shaking once and a "spasm" while a newborn, but we don't have a lot of footage from that time. This is why we are so hesitant....

If we did treat, the recommendation consists of Cellcept, an oral immune suppressor and IVIG, monthly immunoglobulin infusions done at the hospital.

She is still having sleep troubles, up 1-2 times per night, but is much calmer now and able to get back to sleep within 20 minutes when rocked. Much better than the sleep "rages" we were experiencing for four weeks.

Lucas is handling this well, though we know he's worried. He's having some nightmares and we've reassured him several times that Anna will be fine. He also started Kindergarten last week (it's hard to believe!) and he loves his new teacher. I'm sure this is contributing to his stress. Thank goodness for his Grandma taking him to the pool, his Uncle Warren giving him some special time (and a cool toy I might add!)....and his Aunt Kirsten and Uncle Lee taking him to a local carnival with his cousin and Grandma. He had a BLAST!

And thanks to our many friends and relatives who've been supportive to us as we figure out our best course of action. We love you guys! Please sign our guestbook if you haven't already. We plan to share it with Anna when she's grown and this is all a distant memory!

Friday, August 27, 2004 7:15 PM CDT

We, and especially Anna, have had a difficult, exhausting couple of weeks. Anna had a 23 hour EEG and screamed for one hour while being cocooned in a sheet and held down while the electrodes were superglued to her scalp. Though I was told it doesn't hurt, I've noticed spots on her scalp that are nicked or bruised. I could tell she was more than just scared, it was painful. The good news, it appears her results were fine. I'm still awaiting an actual copy of the report. VERY IMPORTANT LESSON, ALWAYS GET ACTUAL REPORTS!!!! I was told the last EEG was fine, but it showed slowed wave activity. One person told us this can be indicative of brain injury and another said lots of people have slowed waves, so we're a little confused!

This past Monday night, we drove to Springfield, IL to have an evaluation for a paraneoplastic syndrome (PNS), possibly opsoclonus-myoclonus syndrome(OMS). We didn't really think she had it, but with her chronic sleep troubles, screaming fits (we later learned they're often called "rage attacks") at bedtime and speech delay, we wanted to rule it out. Upon a 1 1/2 hour evaluation, we were informed that a PNS was suspected and a lumbar puncture (LP) to test spinal fluid was recommended. A significant amount of fluid was taken and we all went back to Ronald McDonald house for Anna to rest for at least five hours before the drive home. About four hours after, Anna started having severe pain. The doc made a house call but Anna had passed out by that time, so he said she should be okay and we left.

She ended up having several crying fits on the way home and had to be held in the backseat by Daddy while Mommy drove. She was more or less inconsolable until about 1:30am when she passed out. She awoke at 6am screaming again and after calls to our doc and the neurologist, Daddy just took her to the ER. They managed to get in an IV and gave her valium, tylenol suppository and toradol and she was finally calmed down. Spinal headache and back spasms were suspected and Anna came home at 6pm. That night she was more comfortable (and stoned) but the next morning and day it got worse again. New meds were tried and seem to be helping. She walked again for the first time today and even did the stairs!

But, we didn't get good news, the spinal fluid results came back abnormal. Her T-cells are 3 times normal levels and she has what the doc calls "Atypical Paraneoplastic Syndrome". (for more specific info. on the treatments and how this thing attacks the brain, see omsusa.org) It's not "OMS" because she doesn't have the "opsoclonus" or dancing eyes part. But the treatment and "workings" of the disease are the same.

At this point, we're really just numb....I feel confused and lost. We have a lot of decisions to make in terms of do we treat, and if so, with what. And if not, what risks are we taking of further brain injury with each infection she gets? We of course will be getting second opinions. We won't get a full report for two weeks from the doc so in the meantime, we'll be looking for some pediatric neurologists with experience in this realm in our area.

Our beautiful baby, I just can't believe it. We again, are "fortunate" b/c hers is a mild case and treatable. But somehow, right now, we don't find that very consoling. I'm sure in the future we will. But right now I just want to scream like Lucas so often does "this isn't fair"! How could she first get cancer and then PNS which is even more rare???? I am just praying and praying that she be spared more nasty side effects. Please pray too!

Tuesday, August 10, 2004 8:56 PM CDT

Hello!

Anna had a normal childhood event today...nurse maid's elbow. Of course, she was screaming in pain but the ER doc fixed her right up. Poor kid.....at least it was easily remedied!

On August 17th she has a 23 hour EEG at UIC and the following week she sees a Neurologist with a specialty in paraneoplastic disorders. Between these two evaluations, we hope to learn more about her chronic sleep problems and speech delay. If no medical basis is found, we plan to try a sleep specialist.

Thanks to all for your continuing support and positive thoughts! Many healing prayers to our friends fighting this and other horrific cancers.

Tuesday, August 3, 2004 5:08 PM CDT

Hello!

We visited the oncologist Monday and her exam went just fine. We discussed her past scans and I noted that the "actelelatasis" (partial collapse of lung) has shown up at just about every other scan. At this point, since she is symptom free we're going to wait and see.

What we do need to address are her chronic sleep (or lack of it!) problems. She doesn't want to go to sleep anymore....she'll scream for two hours! We can rock her and have her asleep in our arms, but as soon as we put her down, it starts all over again, until she finally exhausts, herself throws up and passes out. Its so sad for her and frustrating for us.

It looks like we'll be contacting her neurologist and probably having a 23 hour EEG.

On a happy note, Anna loves to swim and recently decided its fun to jump off the edge and go under water. And we must do this at least 100 times! She's quite the litle fish!

Thanks!

Friday, July 30, 2004 12:59 AM CDT

I can't tell everyone how glad I am that we learned of this forum for sharing our daughter's story. And we're especially honored to meet other parents whose stories of their fight and determination give hope to the many kids fighting this disease.

I just received copies of Anna's last MRI scan and there's no sign of disease! There are concerns with a "consolidation" in her right lung and spots in both lungs, but they appear to be a pneumonia. After doing mulitple breathing treatments, CPT and antibiotics a chest X-ray showed it is cleared up. Yeah!

We see the oncologist on Monday and will let you know if there's anything else to report!

Wednesday, July 28, 2004 1:23 PM CDT

Wow, thanks to everyone whom has sent emails or signed the guestbook. You're all amazing!!!

Sharon, Anna's mom

Tuesday, July 27, 2004 2:06 PM CDT

We have recently returned from the Neuroblastoma conference in Chicago. It was an amazing experience. We are overwhelmed with the heros we met there. So many strong kids and parents. I think of you often and pray for every child and a cure.

Anna Banana, as we like to call her, is doing well. She is one of the fortunate (if you can call it that) kids that is diagnosed before age one. She had an intervertebral mass growing around her left lung. It was found by accident through a chest x-ray at 9 weeks old, for a cough. Her primary treatment was surgery in which most of the tumor was removed. She gets regular MRIs and her scans have been clear.

Anna is sruggling with some developmental delays and receives Speech and OT. She loves the one on one attention at therapy and is making progress. She's recently been treated for a partially collapsed lung. Though its better, the cause is unclear.

Its taken us a long time to reach out to other parents and we recently joined listserv. Thanks to everyone we met at the conference and all of Anna's wonderful caretakers.

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