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Wednesday, July 22, 2009 9:21 AM CDT

So yesterday marked our third anniversary post treatment. A friend asked me if we are celebrating. Indeed we are, but not in a way you may think. Noelle is celebrating by getting braces, going to camp, swimming, playing soccer. Another words, we are celebrating by embracing the little joys of life. Everyday is a precious gift and every normal none cancer related event is a small celebration.

Saturday, June 6, 2009 8:56 AM CDT

Sorry for the lack of updates. Noelle is doing well and is about to wrap up the third grade with great grades. We have all been trying to move beyond the world of cancer. But of course, that attempt is futile and naïve.

Noelle’s best friend’s mom is fighting cancer right now and Noelle’s aunt just finished chemotherapy. So it is never that far away. Also, every nose bleed and black and blue mark gives us heart palpitations. And reminds us that we are only one bad blood test away from a new descent into hell.

Last night we went to the American Cancer Society relay for life. It was quite emotional to see Noelle in the survivor's tee shirt getting cheered as she completed the survivor's lap. Events like that remind Noelle that she is not just an ordinary 9 year old. While it is gut wrenching to think of all she has been through and she was the youngest person to don the survivor’s shirt, the alternative is just unthinkable.

Sunday, February 22, 2009 10:46 AM CST

So the updates are now few and far between. I guess that means life is getting back to normal. Of course there is not such thing as normal as we see our dear friends and family battle other forms of this vile disease. On of Noelle's best friend's mom is in the battle of her life. Noelle assures her that she can beat it as all she has to do is take medicine like Noelle did. Noelle points out that she was sick and got better so should her friend's mother.

Tuesday, December 16, 2008 1:41 PM CST

Wow Christmas is moving in fast. Noelle is so excited about the holidays. But I would expect nothing less from someone named Christmas who was born on New Year's Eve.

Sunday, October 26, 2008 9:17 AM CDT

Noelle has had a busy fall with third grade, soccer and the Nike marathon occupying her time. We just returned from San Francisco where Claire ran another Nike marathon. This is such a great race as it is specifically run to raise funds for the Leukemia & Lymphoma Society. This year it raised $18 million.

Noelle is very proud of her mommy and once again helped run her across the finish line. This year Claire was joined by Marey (mother of super star survivor Ali) and our neighbor Joscelin who ran the race in honor of Noelle.

Wednesday, July 23, 2008 8:11 PM CDT

I often wonder whether leukemia only afflicts the bravest of children or if all kids are innately courageous and their valor only surfaces when they are challenged. I think it is the former.

For example, there is Gwen who at age 4 has been diagnosed with ALL. (Gwen will always have a special place in our hearts as she attended the same pre-school as Noelle and is being treated by the same great doctors and nurses.) She has spent almost a month in the hospital and has had to endure multiple surgeries to address a nasty staph infection. Through it all she has maintained her grace and bravery.

Then there is Noelle who back in February walked around for a day with a fractured wrist while hardly complaining. Well now she broke her thumb on Saturday and made barely a peep. Finally, after it seemed to still be swollen, on Tuesday we took her to the orthopedist who confirmed that her thumb was broken. The doctor while wrapping her in a cast, commented that she has high tolerance to pain.

Monday, July 21, 2008 7:20 AM CDT

Well today marks the second year anniversary of the end of the poison injection and ingestion phase of Noelle's treatment. The fretting and worrying part continues although it abates slightly with each passing day. For perspective I am reprinting Noelle's journal entries from 2 years ago.

Noelle update July 22, 2006

We are trying to figure out how to spend a chemo free weekend. Also, Noelle is coming up with an appropriate way to execute the remaining prednisone and 6-MP pills. Crushed by the wheel of the shopping cart (the fate that befell the remaining methotrexate pill) seems too good for the lousy steroids. After all the misery they have inflicted on Noelle it seems like they should face a slow painful lingering demise.

Also, oddly enough yesterday I took Noelle to the store and ran into one of her oncologists. As we left the store we ran into Noelle’s pediatrician (the very doctor who recognized that Noelle was very sick and who quickly got us into the hospital and started us on the journey that, we pray, ended yesterday and to whom will shortly resume being Noelle’s doctor). So a simple trip to the store turned out to be rife with metaphors and symbolism

Noelle update July 21, 2006

FINITO!!! The sweetest Italian word I have uttered in quite a while.

As Claire or any other marathoner will tell you, you do not stop running at the finish line. Rather your momentum carries you through the finish line and you do not actually stop running for several more yards. Similarly, we have reached the finish line of Noelle’s treatment but we are not done running. Noelle will still require monthly check-ups for the next year. She will continue to take bactrim for the next six months. We will worry about the lion returning and bare the scares from the wounds he inflicted for the rest of our lives. Nonetheless we are grateful to have reached this milestone and pray for our comrades who are still in the midst of battle.


Noelle update July 20, 2006

Even the steroidal moodiness cannot dampen our excitement. ONE MORE DAY OF STUPID NASTY STEROIDS LEFT!!! Today Noelle took the last of her methotrexate pills – nine of them. There was, however, one pill leftover. Guess what Noelle did with the extra pill? She ran it over with her toy shopping cart and busted it into a million little pieces.

Noelle update July 19, 2006

Yesterday, Noelle had a busy day; she took Karate lessons and opened up her first bank account. Somehow she got it in her mind that she needed a bank account and once she sets her mind to something there is no stopping her.

Today is just another fun steroidal Wednesday. Last night we had a massive thunderstorm, coupled with the steroidal rage, there was little chance of getting Noelle into her own bed. Moreover, she awoke several times overnight so no one in the house got any sleep. We do not know that we would have another steroid pulse in us, so we are thankful that on Friday she will take her last planned dose of prednisone.

We have been thinking of things to do to celebrate the end chemo. Eventually, maybe in August or September, we will have a party. It is just too hard to plan and she will not feel great anyway to pull something off anytime sooner. We may take her into NYC on Sunday to see Tarzan on Broadway.

Noelle update July 17, 2006

God willing, we are entering the last few days of treatment.

Today marked Noelle’s last IV administered chemotherapy. She got the last of her monthly shots of Mean Christine (vincristine) today at the clinic. Since her belly was exposed and her shirt was up, Noelle will not let me post the photo I took of Tricia administering the chemo.

Of course, the day was not without its share of drama. Noelle hurt her ankle jumping off a wall on Saturday. Since she was still limping today and given that the steroids can weaken the bones, the doctors felt she needed an x-ray. Fortunately the x-ray was negative but the experience added some time and excitement to our clinic trip.

Today we started the very last five day pulse of the miserable steroids. In addition to the steroids she will take her nightly pill and one half of 6 MP and on Thursday she will take her nine pills of methotrexate. We find it hard to believe that the ordeal of the last 2 ½ years is coming to an end. It will, however, never really end as she will have monthly clinic visits for the next year and we doubt that our fears and concerns will abate anytime soon.

Saturday, July 12, 2008 4:56 PM CDT

Noelle is hitting the summer big time. She has already been to Ontario and has once again proved her fishing skill. She is also attending camps and having a great time. We are praying and holding our breaths that her 2 year off treatment anniversary (July 21) passes without incident.

We also ask that you pray for another childhood leukemia patient. Little Gwen is being treated by the same doctors that treated Noelle. Since this disease is so rare, it seems statistically impossible, but both Gwen and Noelle attended the same little preschool.

Sunday, June 15, 2008 10:37 AM CDT

Well a lot has been happening. Noelle received her first communion and graduated second grade to name two. She had a great year at school and we are proud of her. Next month will mark the second year of off treatment. We still need to make it through 3 more years before we can exhale though.

Also, Claire is going to do yet another Nike marathon for TNT. She is determined and has been training hard.

Please continue to pray for those children and their families who are struggling with this awful disease. Also, as it is father's day, say a special pray for the dads. The stress and strain of this battle tests the mettle of fathers (and mothers) so let's ask God to give them the strength to make it through.

Wednesday, March 26, 2008 1:35 PM CDT

It was four years ago today that Noelle was diagnosed. Oddly, I remember it like it was yesterday yet at the same time it feels like it never happened. Noelle, Claire and I sat secluded in that hospital room, awaiting the results of the second bone marrow aspiration, as the first one taken two days earlier was inconclusive. Even though we were told by the hematologist/oncologist that he believed she had leukemia, we were in denial. But not for long. There was a knock on the door and we were greeted by a fairly large group of doctors, nurses and even a social worker. I said to Claire, good news is usually delivered by one person while bad news comes via an entourage.

What a bizarre 4 years it has been, complete with steroidal ravings, fever and neutropena hospitalizations and of course the constant fear of relapse. Time, however, marches on as we are approaching 19 months off treatment.

Sunday, March 2, 2008 5:02 PM CST

I felt so bad for her that I went out and bought her an Ipod Nano. She held it up to show Jessica and said "can you believe I only broke my wrist and I got an Ipod?" Kinda sad that a broken wrist is not a big deal to an eight year old. Also, when she thinks about that fact that she had leukemia, she is going to ask for a beach house.

Sunday, February 24, 2008 12:05 AM CST

Noelle had been complaining about her wrist after a nasty sledding fall yesterday. So this morning we took our first visit to the ER in the post leukemia era. A quick two hours later, Noelle was diagnosed with a fractured wrist.

It was a weird experience being back in the ER and poor Noelle now has to keep her arm in a sling.

Saturday, February 9, 2008 2:25 PM CST

Wow it has been a long time between updates. Well no news is good news, at least in regards to Noelle. She is doing very well with no major health problems. She is also getting good grades. We are trying to keep cancer in the rear view mirror but we all know that we are only one bad blood test away from hell.

We will add some new pictures shortly. Please pray for all of the way too many children who are battling leukemia.

Monday, December 24, 2007 10:25 AM CST

One Solitary Life
(the original version by Dr James Allan Francis)

Let us turn now to the story.

A child is born in an obscure village. He is brought up in another obscure village. He works in a carpenter shop until he is thirty, and then for three brief years is an itinerant preacher, proclaiming a message and living a life.

He never writes a book. He never holds an office. He never raises an army. He never has a family of his own. He never owns a home. He never goes to college. He never travels two hundred miles from the place where he was born. He gathers a little group of friends about him and teaches them his way of life.

While still a young man, the tide of popular feeling turns against him. One denies him; another betrays him. He is turned over to his enemies. He goes through the mockery of a trial; he is nailed to a cross between two thieves, and when dead is laid in a borrowed grave by the kindness of a friend.

Those are the facts of his human life. He rises from the dead. Today we look back across nineteen hundred years and ask, What kind of trail has he left across the centuries? When we try to sum up his influence, all the armies that ever marched, all the parliaments that ever sat, all the kings that ever reigned are absolutely picayune in their influence on mankind compared with that of this one solitary life…

Thursday, November 22, 2007 7:57 AM CST

HAPPY THANKSGIVING!

There is so much to be thankful for, particularly Noelle’s 16 months off treatment. But there are far too many people who have empty chairs at the Thanksgiving table and empty hearts. Please remember and pray for them today.

Tuesday, November 13, 2007 9:04 PM CST

The Snowflakes were in an epic struggle, in the penultimate game of the season. After two periods, the score was tied 1-1. Noelle, having already played a quarter at goalkeeper and a quarter at midfield, begged her coach to let her play attack. Late in the third quarter the other team made a crucial mistake; it coughed the ball up to Noelle while she was in front of the goal. She calmly lined up her shot and lofted the ball into the back of the net, well beyond the reach of the opposing goalkeeper.

Of course since it is under 8 soccer, it all happened in slow motion. But that is not important neither is Noelle scoring the winning goal. What is important is that she is enjoying being a seven-year-old girl. It is hard to believe that just less than 4 years ago, just prior to diagnosis, she suffered severe leg and bone pain (thanks to the leukemia cells overwhelming her bone marrow). We are so grateful yet still are afraid. Moreover, it is hard to get too excited about leukemia survival statistics when we reflect on our many friends who paid the ultimate price to this beastly disease.

Anyway, sorry I have been such a slacker. Things have been busy. We went to San Francisco for the Nike 26.2. Claire and our friends did great and raised a lot of money. Noelle was in her glory as she was treated like the celebrity she has become.

Noelle also was Flower girl to our friend Jess. It was a beautiful wedding and Noelle enjoyed being a part o fit.

We will try to update more often. Please pray for all or friends who are struggling.

Tuesday, October 16, 2007 8:03 AM CDT

Yesterday, Noelle learned why M & M’s are the world’s favorite candy. We have been taking her to the allergist to try to get a handle on her nut allergy. Well it looks like she may have “outgrown” her tree nut allergy and seems to have only a mild peanut allergy. We wonder is 2 ½ years of chemo had anything to do with it. The allergist thinks that products marked made in a factory that processes nuts, such as M & M’s, are safe. So for the first time in her life she got to savor the exquisite chocolate experience that these fine candies offer.

She is also really having a great time playing soccer and has even scored a couple of goals. Notwithstanding her coach’s ineptitude, she seems to be learning how to play this great game. Otherwise she is a normal second grader, dealing with school, homework, friends etc. We still are under the cloud of leukemia and worry every time she complains of an ache or pain or when we got to clinic for check-ups. Also, with so many of our friends struggling with relapses, it is hard not to stay scared.

Please keep all of our friends including Alexia, Ashley and Matthew, in your prayers.

Thursday, September 20, 2007 5:17 AM CDT

It seems that writing about stuff like Noelle doing good in school, playing soccer and just enjoying life as a normal second grader, is not that interesting. But that is not true. The little simple daily events demonstarte that we are moving beyond cancer. Noelle is hitting her stride. She is singing in the choir at church, playing soccer and doing very well at school. Like most second graders she is not perfect. Putting her to bed at night is a WWE event that should be on pay for view. Her bedroom is often times not navigable, etc.

As an aside, I was out having lunch yesterday and ran into the father of a little girl who was treated at Noelle’s clinic. I remember the nights that we were inpatient at the same time and he and I sitting in the hospital family room at 4 AM just staring at each other because we were too exhausted to speak. [It occurred to me that if childhood leukemia is so rare how come I cannot go to lunch without running onto people who are dealing with it?] His daughter is doing great and is now down to clinic visits every 6 months.

This meeting while at first blush, seems insignificant, was very profound. To me it symbolized normalcy. It I bizarre that parents of little girls meet in hospitals where their daughters have been admitted because they have cancer. Meeting at delis is much better.

Claire continues her training for the Nike marathon and we are very proud of her. Please visit her TNT website at http://www.active.com/donate/tntnonj/tntnonjCTalari2.

Wednesday, August 29, 2007 6:24 AM CDT

Having spent those miserable on treatment years praying that time would fly; we now want to slow it down. Alas, it doe not work that way. After a summer that zipped by, unbelievably, our little girl starts second grade next week.

We are hoping to squeeze a little more summer fun out of Labor Day weekend, and then it is back to the grind of waking Noelle up for her 7:45 AM school bell. Noelle is looking forward to the fall though and loves to pick apples and play soccer. This year her dad is coaching her soccer team. Somehow he believes that successfully rooting for Italy in last years world cup, somehow qualifies him to coach a sport he has never played. Should be entertaining.

On the medical front, we are down to clinic visits every other month. The next one is coming up so please pray that we get through it without any bad news. Also, please keep the prayers coming for all of our fellow travelers, some of whom are out of options.

Saturday, August 4, 2007 6:05 PM CDT

Noelle is doing well. We went to the beach for a few days and she was quite the ocean swimmer and bogie boarder. We were very proud of her and how she quickly overcame her fear of the sea. Of course it is all relative, being a cancer survivor at age 7 gives new meaning to the definition of valor.

I went to a concert a few weeks ago. It was an unusual event, where a few Nashville songwriters sang the songs they had composed for the biggest country acts such as Brooks & Dun, Garth Brooks, Alan Jackson, Tim McGraw and George Strait to name a few.

Tim Nichols sang a song he wrote for Tim McGraw called “Live like you were dying.” The chorus goes like this

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Shu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

I sing it to myself (and to dismay of those around me sometimes out loud) when this cancer world starts to get me down.

Please pray for Alexia who has relapsed after her second transplant. Her family has made endured unbelievable hardship including leaving there beloved Argentina for North Carolina in search of a cure.

Sunday, July 29, 2007 8:32 AM CDT

Thanks for checking in on Noelle. She is having a good summer, her first since 2003 without chemo or a port in her chest. Outwardly she is almost indistinquishable from all her little friends. Emotionally, however, she is a lot different. For example, having lived in a life and death adult world for a third of her life, she is mature beyond her tender years.

Thanks to all of you who have contributed to Claire's TNT effort. She is just about 1/3 of the way towards her goal.

Saturday, July 21, 2007 10:32 AM CDT

Happy one year off chemo anniversary to Noelle. Yes it was one year ago today that Noelle gagged down her down her last gargantuan chemo pill, had her last steroidal hissy fit, had her little spine poked with a needle and injected with chemo, etc.

Not to say that the last year has been care and worry free. We have collected strokes every time she gets a leg pain, a bruise, a bloody nose, a headache, etc. etc. Our lives and perspective on life have both been irreparably changed.

Moreover, our eyes are fully open to what a cruel world this can be. For example, little Michael spent more than ½ his 11 years fighting leukemia. I learned from Michael’s CB Page that he passed away Monday.

So today we celebrate life and embrace Noelle and hold her close while at the same time we mourn our brave innocent comrades like Michael who have made the ultimate sacrifice in the cancer war.

Tuesday, July 10, 2007 6:41 PM CDT

The results of Noelle's July CBC were normal. Since we are zeroing in on one year off treatment, her clinic visits may drop to once every two months.

Otherwise Noelle is having a good summer. Claire has been training hard for her marathon and she has even started to get some donations. Claire's TNT Website

Saturday, June 30, 2007 7:42 AM CDT

Noelle has been busy this summer. She has become a pretty good swimmer and has frequently been swimming. She attended the YMCA camp last week and had a great time.

On the medical front she seems to be doing well. Monday we go for her monthly checkup and CBC. Even though she is approaching a year off treatment, we still have the sword of Damocles over our heads. We pray that the horse hair does not fail.

Claire has been busily training for Nike 26.2. Her fund raising, however, is abysmal. To date she has raised $0 so feel free to change that. Claire's TNT Website

Sunday, June 17, 2007 8:13 AM CDT

Well school is out for the summer and Noelle is no longer a First Grader.

Her June clinic visit went well.

The jungle gym is awesome. I promise some photos soon. Noelle loves it and has even done a little "upgrading" by dragging a kiddy pool under the slide.

On Thursday we attended a LLS black tie event where Noelle was among the Honored Survivors recognized at the event. Seeing my seven year old daughter walk up to podium, whilst a soloist sings "Wind beneath your wings," to receive an award because she is a cancer survivor was a little tough to take. As parents we expected that we would be cheering Noelle's athletic and academic accomplishments. We never dreamed we would be in a club where the mere fact that surviving one's seventh year of life would be such an extraordinary and cheered event.

Saturday, May 19, 2007 4:05 PM CDT

Noelle has mentally closed the leukemia patient chapter in her young life. She no longer wants to be identified as a cancer survivor, but rather wants to be a normal seven year old. She refused to attend the American Cancer Society relay for life even though she could have run the survivor’s lap and attended the survivor’s dinner. At the LLS TNT kick off meeting today she asked that she not be introduced, even though she was happy to see her mom introduced as a mentor for Nike 26.2.

She seems to be doing well though. She has done very well in school even though we are still so worried about the long-term cognitive impact of her treatment. We also noticed, at her school spring concert, that she is the tallest first grader. So much for all that worrying about those studies, which show that childhood leukemia, patients’ growth is stunted by the chemotherapy.

Saturday, May 12, 2007 9:08 AM CDT

Noelle had a good clinic visit. She was even brave enough to coach her friend through her first post port (e.g. direct to vein) blood draw.

Her bike riding skill is also quite impressive. She has moved beyond her little pink bike to a nice multi speed cruiser. Of course we all had to buy bikes, accessories, racks etc. Man the technology and price has really changed since my last bike – a 1970 stingray with a banana seat.

Noelle has decided that her MAW will be the mother of all play sets complete with a castle, swings, slides etc. It should be here in a week or two and we will post some pictures when it arrives.

Please keep the prayers coming for all of the children suffering with cancer.

Tuesday, May 1, 2007 5:28 PM CDT

Back to the clinic tomorrow for monthly blood work.

Otherwise Noelle is doing well. She has really mastered the two wheeler. It is quite an operation watching her while walking Dapper. Last night, while eyeing her zipping around on her bike, I lost track of Dapper. He found a small whole in a fence surrounding a rather large pond and was swimming about half way across, in pursuit of geese, when I spied him.

Please drop by and offer some encouragement to Ashley who has to battle the beast for a third time. Her brother Ryan is also an ALL survivor. Just when you think life has been unfair to you…..

Wednesday, April 18, 2007 4:35 AM CDT

We took Noelle to Disneyworld. The trip got extended because of the awful weather back home. Noelle enjoyed meeting the princesses and even got to dress up like Jasmine. I have added some new pictures to the photo album and have some really great pictures which I hope to add to the homepage.

Friday, April 6, 2007 5:33 PM CDT

Happy Easter!

Where to start? The important stuff.

Noelle had her monthly clinic visit and she did great! Counts are perfect and she is doing well. We are praying that come July we can shift to visits once every two month because Noelle really dreads the blood draws and misses the ease of her port.

Noelle's report card was near perfect. We note that not only as proud parents but also because we fear the cognitive effects of all that chemo.

She has had some interesting exchanges at school. For example, one girl teased her because she could not yet ride a two wheel bike without training wheels. Noelle countered "well it is because I have been dealing with cancer for three years."

Monday, March 26, 2007 3:20 PM CDT

As if we could not hate March 26 anymore than we do, we just learned that Dapper has Lyme disease. I told the vet that he had better take good care of Noelle's dog since she has already had her share of disappointment and heartache.

Monday, March 26, 2007 9:09 AM CDT

Today in New York City at the intersection of Greene Street and Washington Place, just east of Washington Square, as has been done on this date since 1912, 146 flowers will be laid in memory of the 146 young girls who perished in the Triangle Shirtwaist factory fire.

The girls, who died in one of the most horrific industrial fires ever, were largely Italian and Eastern European immigrants in their very young teens. They toiled 60-72 hours to earn $1.50 a week.

This lends a little perspective to what happened to us three years ago. On this date three years ago, we were in the hospital awaiting to results a second bone marrow aspiration which we prayed would confirm that Noelle did not have leukemia. When we opened the door to Noelle’s hospital room to a team of doctors, nurses and social workers, we knew it was not good news.

The events of three years ago still make us shudder. It is hard to contemplate all that little Noelle has endured and all the risks and obstacles that she now faces.

But she has survived. Unlike 1911 when the young lives of immigrant girls were valued at $75 (the amount that the owners of the Triangle Shirtwaist factory were required to compensate the victims in a civil trial) we as a society have devoted considerable resources (I know we can and should do more) to save the lives of leukemia’s young victims.

In your prayers please remember all the young who have suffered from fire, disease accident or anything else.

Sunday, March 25, 2007 8:09 AM CDT

Luckily Noelle is running better than our computer. We have ordered a new one so we should be able to update her page shortly.

Noelle seems to be chugging along. She is focused on things such as which: earrings to wear in her newly pierced ears; room to lock Dapper and herself in; schoolchild to be mad at for having the temerity to ignore or disobey Noelle; annoying Disney Channel show to blast on the TV, etc.

That is not to say that life is completely normal. She still has monthly blood draws. Also, we are mindful and pray for all of our little friends who have relapsed or died from this disease. There are constant reminders that our struggle will never end, such as the new study showing that ALL survivors have an increased risk of developing other cancers even as long as thirty years after treatment.

Sunday, February 25, 2007 10:13 AM CST

Since Monday night, Noelle has been running a fever. She no longer has her port, so we neither worried about the possibility of a line infection nor rushed to the ER. Of course we worry about other things. Like returning to her pediatrican for the first time in almost three years and fearing and thinking about how our last trip there was the first step towards hell, sitting in the same exam room, with the same nurse, administering the same strep throat test. Anyway, Noelle did not have strep throat and yesterday her fever broke, the doctor thinks it is just a virus. The fact that her pediatrician seemed unaware that she just finished treatment for ALL, even though he was the one who sent her to the pediatric hem/onc, was disappointing. Somehow we thought there would be much fanfare, here was little Noelle triumphantly returning to his care after enduring leukemia and chemo etc. We thought that the significance of the hand off from oncology back to regular medicine would have been appreciated by people other than us. But of course that is the way it is in the world of childhood cancer.

Thursday, February 15, 2007 5:22 AM CST

In one felled swoop, Noelle had her port uninstalled and her earrings installed. The doctor who pierced her ears was not the same doctor who removed her port. He hung around the OR, after his other surgeries were done, just to pierce Noelle’s ears. He was very kind and as a cancer survivor demonstrated a certain empathy with Noelle.

Even though we are excited about this latest step, events tend to keep us humble. On Thursday while we were down stairs at same day surgery, another family from our parish was upstairs at the clinic hearing those dreadful words “Your child has leukemia.” Also, it seems that so many of our on line friends are having their lives torn apart by these monster. Please keep all those that face this disease in you prayers.

Thursday, February 8, 2007 7:46 AM CST

The port removal surgery is schduled for today at noon. We have to keep Noelle occupied and away from drink and food until then. Our dear friends sent her some star earring, beacuse she is after all a true star, so she is psyched about getting the ears pierced. We, of course have not slept a wink and have frankly lost the nerve we developed during the long treatment schdule. Getting the port removed is an important step towards normalcy.

Tuesday, January 30, 2007 9:59 AM CST

The nurse called and the port removal surgery and earring installation will be on February 9 at 11:00 AM. We are nervous yet happy.

Saturday, January 27, 2007

Two, seemingly unconnected, things are now the focus of Noelle’s attention. One is getting her port removed. Since, May 2004 she has had a port installed in her chest. This was done for ease of: chemo and drug administration; and blood draws. The down side is that the port can become infected with some very serious bacteria. Thus every time Noelle gets a fever we must rush to the hospital to get antibiotics and blood work.

Since she finished chemo in July, the port is of limited utility and is only used for her monthly blood draws. When the port is gone, she will need to have blood drawn from her arm. She has been extremely apprehensive about getting the port removed because she has had some terrible and painful experiences when blood has been drawn from veins in her hands and arms.

Noelle has also been focused in getting her ears pierced. At seven, we feel she is too young to handle the responsibility of dealing with earrings. We, however, were dangling the ear piercing carrot in front of her in order to ease her reluctance at getting her port removal surgery.

Yesterday the two issues collided. We went to see the surgeon to schedule her port removal. After the surgeon left, his nurse asked us is we had any questions. Jokingly, I asked if she could get her ears pierce during the surgery. The nurse said yes she believes she can!! Needless to say, Noelle now is clamoring to get her port out and cannot wait until the surgery is scheduled so she can get her ears pierced. We will be happy to be rid of the port because of the infection risk. Moreover, the port is symbolic of all she has endured and frankly we do not need any reminders.

Thursday, January 11, 2007 1:45 AM CST

Noelle had her sixth monthly OT check up yesterday. Hard to believe but she has been off treatment for six months. Her CBC is normal and we pray they continue to be. Next up is surgery to remove the subcutaneous port in her chest. While neither the surgery nor the need to now draw blood from her arm will be pleasant, it is an important step on her way back to normalcy.

Sunday, December 31, 2006 8:28 AM CST

HAPPY BIRTHDAY NOELLE!!! Hard to believe but she turns seven today. She was one of the last babies born in the last century.

Wednesday, December 27, 2006 2:00 PM CST

Noelle had a great Christmas, her first non chemo Christmas since 2003. Next up is her seventh birthday on Sunday.

Monday, December 25, 2006 8:16 AM CST

One Solitary Life

Here is a man who was born in an obscure village, the child of a peasant woman. He grew up in another village. He worked in a carpenter shop until He was thirty. Then for three years He was an itinerant preacher.
He never owned a home. He never wrote a book. He never held an office. He never had a family. He never went to college. He never put His foot inside a big city. He never traveled two hundred miles from the place He was born. He never did one of the things that usually accompany greatness. He had no credentials but Himself...

While still a young man, the tide of popular opinion turned against him. His friends ran away. One of them denied Him. He was turned over to His enemies. He went through the mockery of a trial. He was nailed upon a cross between two thieves. While He was dying His executioners gambled for the only piece of property He had on earth – His coat. When He was dead, He was laid in a borrowed grave through the pity of a friend.

Nineteen long centuries have come and gone, and today He is a centerpiece of the human race and leader of the column of progress.

I am far within the mark when I say that all the armies that ever marched, all the navies that were ever built; all the parliaments that ever sat and all the kings that ever reigned, put together, have not affected the life of man upon this earth as powerfully as has that one solitary life.


[This essay was adapted from a sermon by Dr James Allan Francis in “The Real Jesus and Other Sermons” © 1926 by the Judson Press of Philadelphia (pp 123-124 titled “Arise Sir Knight!”).]


Merry Christmas

Saturday, December 16, 2006 1:33 PM CST

Noelle update December 16, 2006

Okay we have been slackers as far as Caringbridge goes. I remember the day we would post every day or so. Frankly, there is not much to report aside from usual 6 year old stuff. Today’s crisis: Claire poached one of Noelle’s many notes to Santa to check what gifts she was requesting. Claire then chucked the note in the kitchen trashcan. Noelle, the ever vigilant trash picker, found the note and had a fit. How dare mom read a note destined for Santa? Moreover, how dare she toss something drafted by Noelle? Doesn’t know that all of Noelle’s scribbles must be preserved for future generations? Besides, was not this note supposed to have already been mailed to the North Pole? After some creative explanations on a Claire’s part and a few I hate yous (the first of the non-steroidal induced type, quite refreshing) peace returned.

Tuesday, December 5, 2006 5:10 AM CST

As you might expect from someone named Noelle, she is hitting the Christmas season big time. She has already sat on three Santas’ laps, been to the Christmas Spectacular at Radio City Music Hall and is constantly practicing Christmas carols for her school concert. She can, however, never get too far ahead of herself as the reminders of her journey are still with us. For example she attended an ACS children’s brunch on Sunday, has a clinic visit on Wednesday and has the clinic Christmas party next Sunday. It is humbling to see the happy little children seemingly undaunted by their horrible diseases.

Thursday, November 23, 2006 8:43 AM CST

HAPPY THANKSGIVING!

Noelle says she is thankful for her family, Dapper and her friends. So are we. But we are also thankful that this Thanksgiving, for the first time since Thanksgiving 2003, Noelle does not need to take steroids or the other nasty chemo. We are thankful that her life is beginning to resemble that of a six year old girl without cancer.

We are also thankful for the sacrifices of the doctors, nurses and researchers who have been drawn to the sad world of childhood cancer, not for money or self aggrandizement, but rather to save the lives of the innocent.

Sunday, November 12, 2006 12:46 AM CST

Noelle update November 12, 2006

Bye-Bye Bactrim!! Beginning in March 2004, Noelle had to take two doses of bactrim, three days a week. That is a lot of pills!! Bactrim is an antibiotic/fungal drug that is administered as a prophylactic to immune suppressed patients, in order to prevent a particularly deadly form of pneumonia. At her fourth monthly post treatment checkup on Wednesday November 8, the doctor told us we could stop giving her the bactrim.

Her checkup went well and her counts are good. She is having some issues with skin rashes, but we hope they resolve themselves shortly. Otherwise she is just getting on with life.

We just got some good pictures of the Nike 26.2 which we will post later this week.

Saturday, November 4, 2006 7:30 AM CST

Noelle was a Cheetah Girl for Halloween(sort of a mix between the singing group and an actual cheetah).
She had fun trick or treating with some of her friends from school.

Yesterday, she spent the better part of the day at the school nurse's office, complaining about a stomach ache (who would of thunk that consuming buckets of halloween candy could cause stomach issues).

She told the nurse that her mom and dad were at Aunt Eileen's funeral (although not an actual blood relative we have known Eileen for many years and all of us including Noelle loved her dearly) but that it was okay because Eileen was now with God and she was happy.


Noelle update October 31, 2006

Even though we had a great time in San Francisco and Claire ran a fabulous marathon (her first), we are saddened by the passing of a dear friend. She bravely fought against an insidious brain tumor and leaves behind six children and many sad people. Please remember her and her family in your prayers.

Sunday, October 15, 2006 4:16 PM CDT

Noelle update October 15, 2006

Last week was very exciting for Noelle. On Tuesday, she met with Congressman Frelinghuysen. Several months ago, the Leukemia Society had asked children from around the country who suffer from blood cancers to create a drawing about them or their diseases. Noelle prepared a drawing of a magical machine which would cure cancer in a single pain free dose of specially flavored medicine. The Leukemia Society thought that it was so good that they included it in their display in Washington D.C. After the display was over, they thought it would be a nice gesture if Noelle presented her picture to the Congressman. There is a link above to a nice article about Noelle.

On Wednesday, she had her third post treatment clinic visit. While her counts were good, she has been manifesting a troublesome rash. So we had to take her to dermatologist on Friday. The dermatologist believes she is suffering from hives from an undetermined source and prescribed some antihistamines. We chuckled, thinking of the thousands of pills she has consumed, when the doctor asked if she could take pills.

Saturday was another soccer game. She insisted on playing goalie and did really well. I was amazed at how unafraid she was as she hit the ground and gobbled up several shots. Of course, soccer goalie probably seems easy after all she has been through.

Sunday, October 1, 2006 9:33 AM CDT

While we have no delusions that we are raising the next Mia Hamm, Noelle actually did okay at her soccer game yesterday. We were pleasantly surprised to see her dribble with the ball and drive up the field.

We were also delighted to cheer her on from the sidelines. Not too long ago, our cheers were muted by hospital walls. We cheered for: high ANC; low fever; good blood counts; clear spinal fluid; chemo intake without puking; spinal taps without damage; etc. Of course, every month we are forced to cheer for some of the same things but it is nice to mix in some more normal cheering.

She also seems to like school and continues to amaze me with her pithy observations. For example, after her soccer game she told me that it looks like “mom’s fast gene is going to help me.” She went on to explain that she believes she inherited some of Claire’s speed but is not quite sure what I have contributed.

Monday, September 25, 2006 9:10 AM CDT

Noelle update September 25, 2006

In Noelle’s first grade class, the children raise their hands and ask the class to pray for certain intentions Noelle had mentioned that she thought some of the intentions were silly. Claire suggested that she pray for children with leukemia. Noelle countered that that would not be necessary since they should only pray for people who died or might die from their afflictions. Claire had to tell her that children die from leukemia. Noelle said yea but only years ago or in places where the children do not get good medical care but certainly not here in the US. She further added that she did not believe that God would kill children. She then asked Claire if she was going to die from leukemia. Claire told her that she did not think so but that we were very scared. Noelle then said “oh is that why you cry all the time.”

The next day in class Noelle raised her hand and asked for prayers for her friend Tara “who has leukemia like me.”

Monday, September 18, 2006 2:22 PM CDT

Noelle update September 18, 2006

Some of Noelle’s insights are pretty interesting. We went to a MAW picnic yesterday. As you can imagine, many of the children were in wheelchairs. Last night, after having the day to mull it over, Noelle asked us why those children were in wheelchairs. She added that it just is not fair that those children are confined to wheelchairs.

Friday, September 15, 2006 1:05 PM CDT

Noelle update September 15, 2006

Noelle had her second monthly off treatment clinic visit and did just fine. Her counts look good and she even grew another ½ inch. She has been busy with soccer, Dapper and school.

We would love to be a fly on the wall at her school. The other day she regaled us with a tale about how she bravely removed a caterpillar, that all her friends thought was poison, from a tree in the school playground.

Sunday, September 10, 2006 4:18 PM CDT

Noelle has been busy. Both school and soccer season started last week. This week she has full days of school and she also starts karate. We have found the world of soccer to be quite entertaining. Noelle had one practice, on Thursday, followed by a game on Saturday. I guess they do not want to over train or risk leaving their game in the locker room.

Noelle seemed to have fun playing but obviously does not understand the nuances of soccer. After the first quarter during a water break, she asked us when the game was going to start and was shocked when we told her she was already ¼ ways into it.

This week we will have to take her to the clinic for her monthly check up. Even though things are going well, we have not forgotten that we are living under the shadow of leukemia.

Monday, September 4, 2006 10:08 AM CDT

Noelle update September 4, 2006

Hopefully, we are putting this whole leukemia business largely behind us. Noelle is just too busy for it now. She starts first grade in two days and has a demanding (but incredibly cute) Dapper to care for. We promise to update the pictures, but just how many shots of a Labrador and a six year old do you really need to see??

Saturday, August 26, 2006 11:19 AM CDT

Noelle update August 26, 2006

Noelle is doing well. She has settled into being OT rather nicely. We cannot get too far ahead of ourselves though, as she still has monthly clinic visits to remind us that we are only one bad CBC and follow up phone call away from hell.

We have not had much time to catch our breath with all the end of summer/back to school stuff. We have also been adjusting to our new dog. Its funny, but giving him his medicine is a lot like it was when Noelle was first diagnosed. Also, she really seems to enjoy Dapper. They are getting along famously and he is a very good and well behaved dog.

Thank you for checking in on Noelle and please remember her and all of the other children and families who are battling childhood cancer.

Wednesday, August 23, 2006 7:38 PM CDT

In case we need any reminders about the cruelty of this dreadful disease, please pray for Donovan who is having an awful time battling this monster and the families of two new angels Max and Curran.

Sunday, August 20, 2006 9:38 PM CDT

Noelle finally got a dog (according to her she has been waiting her entire life to get a dog)! Dapper was breed to be a seeing eye dog. Before he started intensive training, however, he manifested a fear of thunder. This phobia ended his career as a guide dog. Noelle is delighted and feels he is a perfect dog for her since she is also afraid of thunder.

Friday, August 18, 2006 11:53 PM CDT

Please pray for our little friend Donovan and his family. They just received the awful news that he has relapsed.

Noelle update August 17, 2006

Noelle had her first OT clinic visit yesterday. It went well although she has a rash we have to keep an eye on and there was no explanation (aside from ‘growing pains’ or ‘steroidal residual’) for the sudden leg pains she has been experiencing.

It looks like the dog issue will be resolved this week. We began to make arrangements to adopt a beautiful black lab, when MAW called saying they would provide a dog for Noelle. Since we are not ready for two dogs, Noelle will use her MAW for something else.

Wednesday, August 9, 2006 12:00 AM CDT

Noelle update August 9, 2006

Well MAW put a big kibosh on Noelle’s dog wish. Apparently they had some bad experiences in the past. So we will have to get Noelle a dog ourselves. Noelle did throw out three wishes though: (1) fashion designer; (2) farmer; and (3) book author. We will wait a week or two to revisit the wish issue.


Noelle update August 7, 2006

It was an exciting weekend for Noelle. Saturday one of our friends who baby sits Noelle came over Saturday morning carrying a flower. She just got engaged and brought the flower over to Noelle because she wants Noelle to be her flower girl!! Noelle is ecstatic. She has wanted to be a flower girl for a long time.

Otherwise life is returning to some form of normalcy Noelle has been: swimming; going to camp; going to birthday parties; etc. Of course, emotionally we can never fully return to the days before cancer. Moreover, Noelle was four years when she was diagnosed. She is now a poised articulate little person of six.

Tonight Make A Wish is coming over to meet with her. We think she is going to wish for a dog but we will see.

Friday, July 28, 2006 12:27 AM CDT

Noelle update July 28, 2006

The last week, Noelle’s first full non chemotherapy week since March 2004, seemed to go by pretty quickly. Noelle is just doing normal 6 year old things. She is at camp and has now lost both of her front teeth!! We still have not settled on a proper celebration. We did take her to see Tarzan on Broadway. Coincidentally, when we were in the parking garage awaiting our car, we ran into Molly, Donna and Billy. While we have spoken many times over the computer, it was the first time we actually met.

Also one of other friends with whom we have virtually only had cyber contact, has come through once again. Ali and Marey sent Noelle a nice note along with a survivor’s tee shirt and a survivor’s medal!! When we get a second, I will take a picture of Noelle donning her new shirt and medal and post it.

Saturday, July 22, 2006 9:36 AM CDT

Noelle update July 22, 2006

We are trying to figure out how to spend a chemo free weekend. Also, Noelle is coming up with an appropriate way to execute the remaining prednisone and 6-MP pills. Crushed by the wheel of the shopping cart (the fate that befell the remaining methotrexate pill) seems too good for the lousy steroids. After all the misery they have inflicted on Noelle it seems like they should face a slow painful lingering demise.

Also, oddly enough yesterday I took Noelle to the store and ran into one of her oncologists. As we left the store we ran into Noelle’s pediatrician (the very doctor who recognized that Noelle was very sick and who quickly got us into the hospital and started us on the journey that, we pray, ended yesterday and to whom will shortly resume being Noelle’s doctor). So a simple trip to the store turned out to be rife with metaphors and symbolism

Noelle update July 21, 2006

FINITO!!! The sweetest Italian word I have uttered in quite a while.

As Claire or any other marathoner will tell you, you do not stop running at the finish line. Rather your momentum carries you through the finish line and you do not actually stop running for several more yards. Similarly, we have reached the finish line of Noelle’s treatment but we are not done running. Noelle will still require monthly check-ups for the next year. She will continue to take bactrim for the next six months. We will worry about the lion returning and bare the scares from the wounds he inflicted for the rest of our lives. Nonetheless we are grateful to have reached this milestone and pray for our comrades who are still in the midst of battle.


Noelle update July 20, 2006

Even the steroidal moodiness cannot dampen our excitement. ONE MORE DAY OF STUPID NASTY STEROIDS LEFT!!! Today Noelle took the last of her methotrexate pills – nine of them. There was, however, one pill leftover. Guess what Noelle did with the extra pill? She ran it over with her toy shopping cart and busted it into a million little pieces.

Noelle update July 19, 2006

Yesterday, Noelle had a busy day; she took Karate lessons and opened up her first bank account. Somehow she got it in her mind that she needed a bank account and once she sets her mind to something there is no stopping her.

Today is just another fun steroidal Wednesday. Last night we had a massive thunderstorm, coupled with the steroidal rage, there was little chance of getting Noelle into her own bed. Moreover, she awoke several times overnight so no one in the house got any sleep. We do not know that we would have another steroid pulse in us, so we are thankful that on Friday she will take her last planned dose of prednisone.

We have been thinking of things to do to celebrate the end chemo. Eventually, maybe in August or September, we will have a party. It is just too hard to plan and she will not feel great anyway to pull something off anytime sooner. We may take her into NYC on Sunday to see Tarzan on Broadway.

Noelle update July 17, 2006

God willing, we are entering the last few days of treatment.

Today marked Noelle’s last IV administered chemotherapy. She got the last of her monthly shots of Mean Christine (vincristine) today at the clinic. Since her belly was exposed and her shirt was up, Noelle will not let me post the photo I took of Tricia administering the chemo.

Of course, the day was not without its share of drama. Noelle hurt her ankle jumping off a wall on Saturday. Since she was still limping today and given that the steroids can weaken the bones, the doctors felt she needed an x-ray. Fortunately the x-ray was negative but the experience added some time and excitement to our clinic trip.

Today we started the very last five day pulse of the miserable steroids. In addition to the steroids she will take her nightly pill and one half of 6 MP and on Thursday she will take her nine pills of methotrexate. We find it hard to believe that the ordeal of the last 2 ½ years is coming to an end. It will, however, never really end as she will have monthly clinic visits for the next year and we doubt that our fears and concerns will abate anytime soon.

Monday, July 10, 2006 4:47 PM CDT

Noelle update July 10, 2006

Noelle had a great Fourth of July. We went to Ontario where she fished and swam. Check out the pictures. Yesterday she helped me root the Italians on to victory. FORZA AZZURRI!!!

This week she is in camp at the YMCA with a lot of her little friends from her pre-school (and bald) days. We are definitely in the countdown mode as we, God willing, move inside of two weeks until the end of chemo.

Thursday, June 29, 2006 5:37 AM CDT

Noelle update June 29, 2006

It has not been much of a summer so far. The rain has been unrelenting and Nolle is still coming off her steroidal funk. It seems like the steroids are getting harder and harder on her little system. In any event, Noelle is trying to have a good time. She started karate classes this week and it is extremely funny to watch her try to assume the praying mantis position while screaming “Yaa” as her little fists punch an imaginary enemy. She is also attending a day camp at the YMCA. It is the same place where she attended pre-school. The teachers, nurse and staff were there for us at the beginning of this awful journey so it is only appropriate that they be there when, God willing, Noelle’s treatment ends.

AVANTI AZZURRI

Noelle update June 25, 2006

Noelle just finished what we pray is her penultimate steroid pulse --forty-five milligrams of prednisone daily for five days. The steroids are the worst part of treatment in that they make her incredibly moody. It is extremely hard to do anything since at any moment she is liable to break out in tears.

She also craves weird stuff. This time it is garlic flavored “New York Style” mini bagel toasts. We learned that they have to be garlic and they have to be mini.

Tuesday, June 20, 2006 8:12 PM CDT

Reality Television

TV has become nothing more than one reality show after another the “Apprentice,” “Big Brother,” “Survivor,” etc. For the last 15 months, Noelle has been playing her own game of Survivor. Instead of tribes, alliances and immunity challenges, however, she has been dealing with oncologists, nurses, child life specialists and a compromised immune system. Unlike the TV version, in this game you do not show up Oprah after losing. Also, winning entails a lot more than the million dollar prize. Since we have kept neither copious notes nor extensive video footage, Noelle’s game of Survivor will not show up on the tube even though it is true reality. There, however, is a show on PBS airing June 21 & 22 called “A Lion In The House” that chronologies the lives of young cancer victims and their families. I encourage all of you to tune in. http://www.pbs.org/independentlens/lioninthehouse/index.htm

Friday, June 16, 2006 5:17 AM CDT

Noelle update June 15, 2006

Noelle is snapping out of her post kindergarten graduation funk. It also seems like she is just getting over the steroids – just in time for another five day pulse starting on Wednesday. Her kindergarten ceremony was cute. All of the kids got up to the microphone and told the audience their future career plans. A lot of kids want to be ball players, horse riders etc. Noelle had been practicing for weeks saying that she wanted to be a child life specialist (like Jenn). But at the ceremony she told the audience she wants to be a fashion designer and a model.

It is getting hot here in NJ which means a lot of visits to the pool. Noelle loves the water and is doing better with her swimming. She also will be going to a local day camp at the end of the month. It seems hard to believe but, God willing, Noelle will be chemo free by the end of next month. She still has a lot to get through, including a spinal on Wednesday and an end of treatment bone marrow aspiration in late July so we are not celebrating just yet (in fact I doubt we will ever celebrate at least not until she gets through the next five years).

Tuesday, June 13, 2006 10:10 PM CDT

Life after leukemia has become a series of routines such as the regular doses of oral chemo and monthly clinic visits which Noelle must endure. The other routines include clicking through the caringbridge sites of our friends, paying particular attention to those that are struggling. Everyday for the last several months, we have been checking on Jacob. Jacob’s story is beyond inspirational. He battled back from long odds to the continual amazement of all his doctors. His family’s faith and devotion is remarkable and has been unshakable even as their sweet 6 year old became an angel. Please pray that their faith carries them through this awful and sad time.

Wednesday, June 7, 2006 11:56 AM CDT

Noelle update June 7, 2006

Well the chicken pox scare is not over. The little brother of one of Noelle’s classmates and friends has the chicken pox. Both she and her brother were vaccinated but the vaccine does not seem anywhere near 100ffective. Since the girl’s contagiousness is possibly peaking right now, we have decided to keep Noelle home from school. Poor Noelle is so upset and since this is her last week of school, she is very sad.

Of course disappointment and sadness is relative. A sweet and brave 13 year old boy from our clinic just earned his angel wings, so it seems trite to dwell on missed kindergarten classes. Please pray that his family finds peace and solace.

Noelle update June 3, 2006

Noelle has finally shaken off her steroidal funk. Good thing because it is a busy time for little Noelle and she really has no room in her schedule for chemo downtime. This week she had her bridging ceremony to acknowledge her graduation from Daisy to Brownie Girl Scout and an awards ceremony at her cheer leading class at the YMCA. Next week will mark the end of her kindergarten career and there will be a picnic on Thursday and a little celebration n Friday. She has a speaking role in the celebration so we cannot wait to see how she does.

Poor Noelle has really had enough of the chemo world. That last steroid pulse was really tough. Her (God willing) penultimate clinic chemo visit is scheduled for June 21.

We have been told that there will be an excellent PBS special on childhood cancer that will run June 21 and 22. It is titled “A lion in the house” we encourage you to watch.

Saturday, May 27, 2006 7:11 AM CDT

Noelle update May 27, 2006

This steroid pulse seems to have hit Noelle harder and more quickly than the others. She just looked at the prednisone and instantly began acting hyper. Oh well, at least we are not in the hospital with chicken pox.

I am a little worried about how quickly she is growing up. There is a little fair in town and she arranged to meet a boy from her kindergarten there. Any magic between the two was thankfully broken, however, when the little macho man insisted on jumping on an adult ride and ending up puking all over the place. I had forgotten that things other than chemo can cause 6 year olds to toss cookies.

Tuesday, May 23, 2006 10:03 AM CDT

We are holding our breath for another day and so, because by then, the chicken pox scare should be over. Tomorrow is Noelle’s scheduled clinic visit ‘just’ for blood counts, vincristine and the start of a five day steroid pulse. We are still not certain if they are going to hold the steroids for a day or two to make sure the chicken pox window is indeed closed.

When I was a young(er) lawyer, I remember defending a case involving allegations about an allegedly odious product. During a deposition, plaintiff’s counsel kept referring to the product as a contaminant, a hazard and in other similar terms. I strenuously objected to his use of this nomenclature, to which he replied “what am I suppose to call it, a blessing?” I have the same reaction now when outsiders tell me that Noelle has the “good kind” of leukemia or point out that the EFS is so high that we are worrying about nothing. Well guess what Ray and Bradley had the good kind of leukemia too, which is little comfort to their parents who now grieve by their empty beds. Also, Daniel and Ethan have the good kind too, yet they are in the ICU fighting for their young lives.

Friday, May 19, 2006 7:41 PM CDT

Noelle update May 19, 2006

Nothing new on the pox watch. We still have another week or so to go before Noelle is out the danger zone for outbreak. She is supposed to start her steroid pulse next Wednesday, but it may be held pending resolution of the chicken pox issue.

Aside from wishing the days away, we are doing okay. Noelle had her school musical on Wednesday and it was cute.

Tuesday, May 16, 2006 10:27 AM CDT

We still have another week or so to see if Noelle's exposure to the chicken pox amounts to anything. This latest fiasco is yet another reminder that the world of outsiders consists of two groups: a) thoughtful people who try mightily to comprehend the incomprehensible; and b) inconsiderate morons. I think group b) is in the majority. To wit, Claire called the parents of a playmate of Noelle to ask that they keep a close look out for the chicken pox. The father told Claire something like "I hope my daughter does get the chicken pox and gets this over with, it is no big deal." Claire corrected him and said well yes it is a big deal because Noelle has leukemia.

I continue to be amazed that some parents at this small Catholic school who all have received the "chicken pox letter", could be so uncaring and thoughtless. On the other hand, some parents in group a), have been great.

Wednesday, May 10, 2006 11:16 AM CDT

The result of Noelle's blood tests shows that she has no titers and therfore no immunity to the chicken pox. Not the news we were hoping to hear. So now our pox vigil will intensify.

Thanks again to those special parents who sent their kids to school knowing that they were going to contract the chicken pox and further knowing that chicken pox could make Noelle very very sick.

Noelle update May 9, 2006

Noelle is just trying to get back to her regular routine. The chicken pox scare has added another wrinkle and two teaspoons four times a day of nasty tasting liquid (acyclovir) to an already full plate of medicine. The high risk days for Noelle contracting the chicken pox are approximately May 12 through 23.

Also, just to add even more drama, on Saturday Noelle took a huge tumble down the outside (concrete) stairs. Her face got pretty scrapped up. When I dropped her off at school today, her principal said “Noelle looks like a prize fighter.” I noted that she has the courage of a prize fighter.

Friday, May 5, 2006 3:15 PM CDT

Noelle update May 5, 2006 3:15 PM CDT

Back from the clinic where they drew some blood to check on Noelle's chicken pox fighting ability. The game plan is that she will take acyclovir, an anti-viral drug, for the next seven days in the hope that it will ward off the evil pox. Otherwise we will wait and watch. The incubation period is 10-21 days.

The onc opted not to try the investigational (not licensed) VZIG product manufactured and currently under development in Canada primarily because: (i) it is not approved and comes from a laboratory without an established track record; and (ii) it may be too late anyway to give it to Noelle.

Noelle update May 5, 2006 9:00 AM CDT

Leukemia never lets us get too far ahead of ourselves. We seemed to be rolling along waiting for the OT date when wham – we are gripped with chicken pox fear. Unlike the mere nuisance that chicken pox presents to normal children, it is an extremely serious (sometimes fatal) ailment for children with leukemia.

Enter a mother of moronic proportions

Last week, a boy in the second grade, who is the brother of one of Noelle’s kindergarten buddies, came down with the chicken pox. We were told that Noelle’s friend had been vaccinated and therefore there was little chance of her infecting Noelle. Well it turns out that Noelle’s little friend was not vaccinated and that her mother was told by her physician that it was inevitable that she would develop the chicken pox within a week or so. Well yesterday she got the chicken pox and of course it was Noelle who walked her to the school nurse’s office. The school nurse alerted us and Claire called the girl’s mother. The mother said, “oh yes I was going to call you tonight…and by the way we knew the pox were coming because my daughter was never vaccinated.”

So much for my chicken pox letter where I told the parents how serious it is and that we needed to know immediately because Noelle would need a special shot ASAP after exposure.

VZIG is no longer available

The only manufacturer of U.S.-licensed VZIG (Varicella Zoster Immune Globulin) has discontinued production of this product. This is the product which immune suppressed children need to take within 72 – 96 hours of chicken pox exposure. Apparently, no one knew it was discontinued and Claire waited over an hour at the clinic yesterday having been told that it was available. So today we wait and wonder if any will be found and pray that Noelle does not develop the chicken pox. There are some experimental and as of yet unapproved versions of VZIG made in Canada which may be a possibility.

Sunday, April 30, 2006 7:20 PM CDT

Noelle update April 30, 2006

I have been a slacker lately and apologize for not updating sooner. Noelle had a spinal tap and vincristine on Wednesday. Even though she had general anesthesia, the spinal tap and an IV injection, she insisted on going to school immediately afterwards so as not to miss gym class.

Also, we are just slamming the lid on another five days of steroidal fun. We knew we were in trouble when Noelle announced that this round she was craving croutons and Lays’ potato chips.

We are resisting the urge to begin the count down, even though Noelle is getting (God willing) close to being done. The count down is irrelevant Noelle’s life was irrevocably changed on March 23, 2004 and she will be living under the shadow of leukemia for the rest of her life.

Tuesday, April 18, 2006 10:38 PM CDT

Last night I was watching television with Noelle. There was a story about Lance Armstrong. Noelle knows who he is and so then the questions started: “What kind of cancer does he have? Is he on chemo like me? Does he take 6 MP?” To you outsiders (those of you who think remission means cure, ALL is the good kind of leukemia, long term maintenance is a breeze, a CK’s parents life is easy etc.) 6 MP is Mercaptopurine, an oral chemotherapy drug that Noelle takes daily. So far she has taken almost 1000 pills of 6 MP.

Saturday, April 15, 2006 6:28 AM CDT

Noelle update April 15, 2006

We jinxed ourselves. Noelle had to go the clinic yesterday and is on some horse pill sized antibiotics. Hopefully we can avoid being inpatient. We also face the challenge of just explaining stuff to Noelle. For example, she called me yesterday to tell me that Jesus must not believe he arose from the dead. Huh?? Well the logic goes like this: the Jewish religion does not believe that Jesus was the son of God and that he rose from the dead; Jesus was Jewish; therefore he does believe that he rose from the dead. Well at least she is not asking questions about leukemia.

Happy Easter!!!


Noelle update April 12, 2006

Last Easter, Noelle was in the hospital. Two Easters ago, she was a screaming lunatic thanks to the heavy dosage of dexamethasone administered during induction. So we are holding our breaths that Easter 2006 will be different and that we can actually take Noelle to Easter Mass.

Life is never that simple for CKs though. There has been two cases of chicken pox at her school – fortunately not in her grade – so we have been a little worried. Also, we have another spinal tap and steroidal week coming up soon so we never get too far ahead of ourselves.

Otherwise, Noelle is doing pretty good. She got a new bike, is wearing her hair in pigtails and is striving to be a normal happy six year old.

In your Easter, Passover or other prayers please remember Noelle and all of the other brave children including but not limited to: Alexia; Donovan; Keegan; and Hunter.

Wednesday, April 5, 2006 9:36 AM CDT

Noelle update April 5, 2006

Freedom!! Noelle got out of the hospital this morning and seems to be feeling well. We were suppose to be on our way to Phoenix by now for a mini vacation, but we have learned not to expect any of our plans to work out. That is okay because Noelle is more important than anything else in our lives.

Noelle update April 4, 2006

Noelle feels okay and her counts are good. The culture results are still not back yet so to be safe she will spend at least one more night in the big house.

Noelle update April 3, 2006

Back on the roller coaster. Noelle spiked a fever today. We spent a quick five hours in the ER and then she was sent to a regular room. Her counts were pretty good but since she appears to be allergic to the favored long acted antibiotic she had to be admitted for infusions every four hours. It looks like our mini-vacation which we planned this week isn’t happening.

As tempting as it may be, it is inappropriate to wallow in self-pity. I walked into the hospital and saw a young patient’s mom in the great room, in almost the same spot I last saw her 3 weeks ago, the last time we were inpatient. Unlike us, however, she has not left. The local paper just ran a story about him Laughter is his best medicine

Saturday, April 1, 2006 9:05 PM CST

Noelle update April 1, 2006

Since it is day 4 of 5 on steroids we braced for the worst. I was sitting downstairs watching the news and drinking some coffee when Noelle awoke. She was chipper and happy and greeted me with a big hug and a kiss. We then sat down to a healthy family breakfast of oatmeal, fresh fruit and orange juice. She and I then packed up and headed to the skating ring. We skated for hours and had a ball.

APRIL FOOLS!!

In reality Noelle awoke, screamed at me, ordered that I give her the TV remote and then further ordered me to leave the room. She insisted that I make her macaroni and cheese, which she inhaled for breakfast. We went to the skating ring where she lasted only about 15 minutes. Next it was off to the store where she persisted and we bought cheese puffs, a tent, a toy or two and lemonade. The steroids make it hard for her to focus so she ran from activity to activity. Her appetite was big and she culminated her eating with a big plate of cockles with garlic, olive oil and cilantro.

Wednesday, March 29, 2006 1:11 PM CST

Noelle update March 29, 2006

Noelle went to clinic this morning. Her counts were better and her ANC was 800 so she is back on the chemo band wagon. This is steroid week so it should be fun!!

Noelle update March 23, 2006

Two years ago today Claire called me at about 12 PM. She had just picked Noelle up from pre-school and was told by the school nurse that Noelle did not seem to feeling so well. The nurse opined that Noelle may have mononucleosis because she seemed listless and her liver was swollen. Just prior to this time, poor Noelle seemed to be having a series of unrelated medical problems – strep throat and an allergic reaction to amoxicillin administered to treat the step throat – among them. My friend and father of six commented that we seemed to be having more medical problems with one child than he had with his six.

Claire took Noelle to the pediatrician who told her that Noelle needed to go to the hospital laboratory for blood work. He instructed her to get the blood work done then wait at home for his call. I left work and went with them to the lab. Claire asked the technician if they were running tests to see if Noelle had mono or another disease. When the technician said no, we started to wonder. At about 6 PM the phone rang. The doctor said pack Noelle’s bags and get over to the hospital. He said that she was severely anemic, needed blood and that the head of pediatric hematology would meet us in Noelle’s hospital room. I was extremely concerned and curious as to what was causing Noelle’s condition. I kept thinking over and over about what diseases hematologists treat. Of course at the time I did not know that he was also chief pediatric oncologist. Luckily I did not have time to hit the internet.

The doctor came into her room when we got there. His calm and confident demeanor made me believe everything was going to be okay. He then began to prepare the bomb he was about to drop. He started with some simple questions. “Has Noelle been complaining about leg pain?” Yes. “Has she had any unexplained bloody noses?” Yes. “Has she been fatigued?” Yes. He then showed us the results of her blood work. Her White Blood Count was 1.7 normal should be 4.5-13.5, hemoglobin was 4.8 normal should be 12-15, platelets were 6000 normal should be 150-450,000. He added that she would start feeling better after receiving a transfusion and said that tomorrow he would give her some tests including a bone marrow aspiration. When I heard bone marrow, I knew it was serious and I immediately asked him “you don’t think it is leukemia do you?’ He softly replied “yes, almost certainly she has leukemia.”

And so the journey began.

Wednesday, March 22, 2006 10:43 PM CST

Counts are still in the toilet. ANC = 386. Chemo will be held at least for another week.

Sunrday, March 19, 2006 7:33 PM CST

Noelle got sprung this evening. Nothing has grown in her cultures. Her ANC and WBC have crashed but she has been fever free for the magical 24 hour period. Also, her HGB and platelets are good so we think it is just a virus. Chemo is being held and we have to go back on Wednesday to get her counts checked.

Saturday, March 18, 2006

Noelle is still inpatient and will be until at least Sunday. She still is running a fever and her ANC is dropping. We also learned that she may be allergic to one of the antibiotics. Ironically our journey began two years ago on March 18 when she went to the ER for what we thought was an allergic reaction to an antibiotic. Being in the hospital only gives us more time to reflect and gain perspective. Actually we have had our fill of perspective.


Friday, March 17, 2006
Happy Saint Patrick's Day!!!

Being 1/2 Italian limits the impact of the luck of the Irish for Noelle. She will be spending St Paddy's day in-patient thanks to a stubborn fever. We have avoided being hospitalized for many months now, so I guess it was time for our streak to end.

Thursday, March 16, 2006

When Noelle decides that she is going to do something nothing stands in her way. On Sunday it was making an itch cream treatment out of honey, lime juice and hot pepper. No matter how many times we told her no, she persevered. (I have no idea where she got the idea or the recipe.) This week, she has decided that she must get to school on time. Her school starts at 7:45 AM and we have been a little lax about her punctuality. So far she has gone to sleep early and has been the first one to awaken. Unfortunately, we have steroids coming up in two weeks.

She has also been reading us stories at night. Last night she got hung up on the word “bored.” In the past, we have told her that “bored” is a bad word because we never wanted her to mope around saying she was bored. When she pointed to the word “bored” in her book, as a hint I told her it was a bad word. She seemed to get it but instead blurted out “damn it.” So much for my parenting skills.

Sunday, March 12, 2006

It has been a pretty exciting couple of days for Noelle. On Friday night she went to the circus. Thanks to the good people at the Starlight Children’s Foundation, we had great seats and were able to attend a pre show with the clowns, elephants and other entertainers. Noelle helped one clown open his suitcase full of juggling implements.
Saturday was the Morristown Saint Patrick’s Day parade. It was a beautiful day and she had a good time. I failed to take any photos because I could not hold the camera while holding Guinness Stout.

Thursday, March 9, 2006 8:24 PM CST

Noelle update March 9, 2006

Noelle seems to be getting over her cold and even made it to school yesterday and today. Tomorrow we have tickets to the Ringling Brothers’ circus through the Starlight Foundation. The tickets include a pre show event with the performers and animals. I hope the clowns do not scare her, but then again, given the last two years, I am not sure she will ever be scared of anything.

Tuesday, March 7, 2006 6:39 PM CST

Noelle has been fighting a cold so she has missed school yesterday and today. Thanks to the residual effects of the steroids, she has been having sleepless nights and food cravings. She woke me up at 5 AM yesterday to make her breakfast and insisted that we stay up to watch Disney's "High School Musical" for the 1000th time. If any of you who have luckily been spared viewing this flick want to know anything about it just call me as I have all songs and dialogue memorized by rote.

Saturday, March 4, 2006 10:55 AM CST

Noelle update March 4, 2006

The clinic visit on Wednesday went well, although it seems like it is taking the anesthesia a little longer to work thereby making Noelle uncomfortable for an extra couple of seconds.

We are at day four of five of steroids and it is hitting her pretty hard. She has been struggling to get to sleep and her concentration is non existent. Hopefully she will be up for her skating lessons on Monday!!

Monday, February 27, 2006 10:39 AM CST

Noelle update February 27, 2006

Yesterday morning Noelle came down the stairs fully dressed in a skating outfit which consisted of a snow flake design shirt, matching skirt and stockings and a scarf. She then grabbed her skates and announced that she was ready to go skating. The fact that she has never skated in her little life did not seem to faze her in the least. Even though I last skated 7 years and 20 pounds ago I took her, stuffed my feet into ill fitting rental skates and hit the ice. She had a blast, even though she spent much of her time clutching the wall. She is going to start skating lessons today!!

Noelle update February 25, 2006

Well the Olympics' influence has reached our household. Noelle has pulled out some ice skates and is prancing around the house. Thankfully, the skates have guards. She is insisting that we take her skating tomorrow. We are a little hesitant, however, because her bones have been weakened by the chemo. But something tells me she will get her way and we will take her to a nearby ring.

Also, March will come in like a lion because on March 1 Noelle gets a spinal tap, IV chemo and will start the dreaded five day steroid pulse.

Many of our fellow ALL kids are struggling now so please keep them in your prayers.

Monday, February 20, 2006 8:42 PM CST

Noelle’s chemo pill consumption is 29 during normal weeks. During Steroid weeks, that total soars to 39 pills. A six year old should not have to master the art of downing oral chemo without retching, but every kid with leukemia must learn this skill. We remember the first six months or so of treatment when Noelle could not take a pill without puking or dry heaving.

Today Noelle announced that she has decided how she will use her “Make a Wish.” She wishes that children with leukemia would not have to take pills.

Noelle update February 19, 2006

Okay mother nature, we get it winter is not over yet. Last weekend it was 20 inches of snow. This weekend it is temperatures in the teens and below.

Noelle is doing okay. She is pretty happy. Last week she celebrated her 100th day of school, even though she has missed a lot of those days. Her latest is that she is starting a musical band. She asked me what she needs to start a band. I told her that first she needed to learn how to play an instrument. To which she responded that she already knows how to play and to prove the point she strummed her little guitar generating an unrecognizable tune.

She has also decided that she will become an Olympian if they still have the Olympics when she turns 16. She is a little vague about her sport but has suggested that it will be a running event because she is fast.

Next week, March 1, she has a big day of treatment - spinal tap, IV medicines & steroids. We are apprehensive since after her last spinal in January she developed a limp. Also, we are always wary about the steroids.

Claire and Noelle were featured in a newspaper article Curing daughter's disease is marathon runner's goal

Sunday, February 19, 2006 7:39 AM CST

Okay mother nature, we get it winter is not over yet. Last weekend it was 20 inches of snow. This weekend it is temperatures in the teens and below.

Noelle is doing okay. She is pretty happy. Last week she celebrated her 100th day of school, even though she has missed a lot of those days. Her latest is that she is starting a musical band. She asked me what she needs to start a band. I told her that first she needed to learn how to play an instrument. To which she responded that she already knows how to play and to prove the point she strummed her little guitar generating an unrecognizable tune.

She has also decided that she will become an Olympian if they still have the Olympics when she turns 16. She is a little vague about her sport but has suggested that it will be a running event because she is fast.

Next week, March 1, she has a big day of treatment - spinal tap, IV medicines & steroids. We are apprehensive since after her last spinal in January she developed a limp. Also, we are always wary about the steroids.

Claire and Noelle were featured in a newspaper article Curing daughter's disease is marathon runner's goal

Wednesday, February 15, 2006 8:34 PM CST

Winter came back in a big way!! This weekend we got about 20 inches of snow. Noelle loved it, even though she was disappointed that school was cancelled on Monday. All and all she is doing pretty well. She has her pill schedule down pat, and is already anticipating the 8 ½ methotrexate and 1 ½ mercaptapurine pills she has to take tomorrow.

Claire and Noelle were featured in a newspaper article Curing daughter's disease is marathon runner's goal

Saturday, February 11, 2006 1:51 PM CST

Noelle made it back to school for four days this week so it was a pretty good week. She also got her first report card, which was very good. Meanwhile, we are supposed to get a major blizzard this weekend so we are hunkering down.

Claire and Noelle were featured in a newspaper article Curing daughter's disease is marathon runner's goal

Wednesday, February 1, 2006 2:16 PM CST

Sixteen years ago this morning, I was getting dressed for work when my dad called. He told me that my mom, suffering with breast cancer, had taken a turn for the worse and that I had better get home. I only lived about a half hour away so I darted home, as did all my siblings, so we were there when she breathed her last breath. In a way her death seems like only yesterday yet at the same time seems so long ago. I remember thinking that that was the worse day of my life and that having witnessed her passing, I could take anything. I was wrong. It is kind of ironic that on this awful anniversary, my six year old daughter is sitting at a cancer clinic getting chemotherapy.

Tuesday, January 24, 2006 4:.19 PM CST

We have since learned that the MRI of Noelle's spine was normal. Apparently, during the three hour MRI the only part of her little body that they studied was her spine. The oncs seem confident that the limping is caused by an orthopedic problem and if she limps duirng the next course of treatment, want to do another MRI, this time of her hips, to look for AVN. The orthopedist feels differently and believes it is related to the spinal taps and is not a muscle/skeleton issue. So we just have to wait until next Wednesday when she starts steroids again to see if she has any walking problems.

Noelle update January 19, 2006 3:19 PM CST

Noelle’s MRI was normal. The current theory seems to be that the spinal taps are causing a temporary increase in fluid in the intrathecal canal (the fluid around the spine). This fluid build up is impinging on some nerves and thereby causes Noelle to limp. The limp resolves itself after a week or so when the fluid is absorbed. Since, with the grace of God, we only have three spinal taps left until OT, we will probably just suck it up.

Thursday, January 19, 2006 10:39 AM CST

The MRI proved to be quite an ordeal. Poor Noelle woke up yesterday hungry and thirsty but could not eat or drink because of the anesthesia. We took her to the hospital bright and early and after a quick stop at the Valerie Center for port access we headed off to radiology. Even though we were about 10 minutes early, the clever people at radiology made us wait over 20 minutes in a registration line and then told us the MRI may not happen because we were late. I am still burning mad about their idiocy.

In any event we finally made it to the MRI room and it was scary. I have never seen an MRI before so I was not ready for the foreboding appearance of the big machine. Noelle was a champ, jumped on the bed and took her anesthesia without a problem. The procedure took about three hours so there was a lot of waiting around. We still do not know the results of the MRI but we hope that the source of her limping is nothing serious. Of course when you have a child with leukemia, serious takes on a different meaning.

Wednesday, January 18, 2006 5:31 AM CST

Still trying to determine the cause of Noelle’s limps. We went to the orthopedist yesterday and he could not find any muscular/skeletal problems. That means it is not AVN!!! The current theory is that the problem is cause by the spinal taps. Who would of thought that stabbing a 4-6 year old in the spine every other month would cause problems? In order to determine if the spine is the issue, Noelle needs to get an MRI this morning. Of course, since our stress level is not high enough, the MRI will be done under general anesthesia.

Noelle update January 13

Noelle’s x-rays look okay but she is still hobbling around. We have to take her to the orthopedic surgeon on Tuesday to get his opinion. Could “just” be the ill effects of two years of chemo i.e. weakened bones from steroids, neuropathy from vincristine, neurological damage from intrathecal methotrexate etc. Otherwise she is doing pretty good, although she still seems a little hyper from the steroids.

Noelle update January 10

Back on the hamster wheel. Noelle had a clinic visit on January 4, 2006. The spinal tap, IV vincristine and steroids were not the only fun that awaited us. We learned that her ANC at 705 was low. Also, the steroids really launched her into orbit this time. Monday morning, the day after steroids ended, she awoke at 3:30 AM got dressed for school. After we fed her scrambled eggs with cheese and bacon, we thought she would go back to sleep. No way!! She paced and paced and insisted that we take her to school. You know who won that argument. Also, she has been limping and complaining about ankle and leg pain. Not a good thing!! So today we had to pull her out of school early (she cried of course) and took her to the clinic for a three hour tour. She had an x-ray but we will know the results until tomorrow. Hopefully it is nothing too serious. We did learn that her ANC has rebounded so it is back to full dosages of oral chemo.

Saturday, December 31, 2005 7:39 AM CST

In the world of childhood cancer, we tend to focus on bitter and bittersweet anniversaries i.e. date of diagnosis, date of end of chemo. We lose track of the important happy anniversaries. Today is the sixth year anniversary of the happiest day of our lives. Six years ago we were told that it was well past the time for Noelle, who was supposed to be born on Christmas Eve, to enter the world. Her delivery was difficult and scary but when the doctors handed her to me that was all forgotten and it was love at first sight. Leukemia has not dampened the fact that she is a wonderful child who is full of joy and love. Rather, Noelle’s affliction only highlights her awesome qualities. Happy birthday Noelle and may you have many many more!!!!

Friday, December 30, 2005

Noelle had a very good Christmas. Santa had to use a tractor trailer to haul all of her gifts. Her favorite toy, which she played with for an incredible 45 minutes, was ‘Amazing Amanda.’ Amanda is an annoying programmable high tech doll. She scared me to death yesterday morning when her squeaky voice screamed out “I am awake mommy.” I did not recognize the voice so I grabbed a baseball bat and a crucifix before I figured out it was the doll.

Tomorrow is Noelle’s birthday, and the challenge is to find her a gift that she does not own. Not easy for an only child with leukemia, who plays her stressed out parents like fiddles. She is turning six but acts much older. Leukemia has cost her a chunk of her childhood and has matured her beyond her tender years. I am not sure I like the maturity – she told me that Jesse McCarthy is a “hottie” and has written a love letter to a boy in her class. She is already in Catholic school but I think the convent is next.

We are praying that 2006 is a good year for us. With the grace of God, Noelle’s treatments will conclude in July and she “only” has 4 more spinal taps. Her next spinal is on January 4 the same day that her 5 day steroid pulse begins, which is a great way to kick off the New Year.

Thursday, December 22, 2005 9:24 PM CST

We are about to celebrate our second Christmas under this dark cloud of leukemia. Also, Noelle turns 6 on December 31 meaning she has spent more than 1/3 of her young life getting chemo and enduring all the unpleasantness that comes with the territory. Our feelings of melancholy are exasperated by a kitchen renovation project that will not end.

Even so, it is hard not to get swept up in the magic of the season. Moreover, Noelle is the happiest little girl we know. Her battle with a deadly disease has taught her that life is to be lived full throttle with a song on your lips and a smile on your face. Noelle is truly a wonderful Christmas gift and we thank God that he has blessed us with her presence.

Since it is the season of joy and hope, we cannot forget our brave little friends including Ben, who after having fought so long and hard and endured three transplants became an angel: Alexia, who is improving but is still fighting like hell for her young life; Cameron; who got some awful news and now is battling ALL for the third time and Baby Donovan, who is recovering from a transplant and just turned 1.
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Thursday, December 22, 2005 9:24 PM CST

We are about to celebrate our second Christmas under this dark cloud of leukemia. Also, Noelle turns 6 on December 31 meaning she has spent more than 1/3 of her young life getting chemo and enduring all the unpleasantness that comes with the territory. Our feelings of melancholy are exasperated by a kitchen renovation project that will not end.

Even so, it is hard not to get swept up in the magic of the season. Moreover, Noelle is the happiest little girl we know. Her battle with a deadly disease has taught her that life is to be lived full throttle with a song on your lips and a smile on your face. Noelle is truly a wonderful Christmas gift and we thank God that he has blessed us with her presence.

Since it is the season of joy and hope, we cannot forget our brave little friends including Ben, who after having fought so long and hard and endured three transplants became an angel: Alexia, who is improving but is still fighting like hell for her young life; Cameron; who got some awful news and now is battling ALL for the third time and Baby Donovan, who is recovering from a transplant and just turned 1.
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Tuesday, December 20, 2005 3:12 AM CST

It’s beginning to look a lot like Christmas.

Since her name means Christmas this is really Noelle’s time of year. She is starting to get into the Christmas spirit. Last Friday was her recital and she helped her kindergarten class belt out “Go tell it on a mountain.”

The excitement may be getting to her. Yesterday she was late for school and then we got the call from the school nurse telling us to pick her up as she did not feel well. We are hoping it is just steroid withdrawal. Also, yesterday a photographer for NJ’s biggest paper came over to take pictures of Claire and Noelle for yet another article on Claire’s marathon training for TNT.

Since it is the season of joy and hope, we cannot forget our brave little friends including Ben, who after having fought so long and hard and endured three transplants became an angel: Alexia, who is in the ICU battling for her young life; Cameron; who got some awful news and now is battling ALL for the third time and Baby Donovan, who is recovering from a transplant and just turned 1.
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Wednesday, December 14, 2005 6:23 AM CST

Yesterday marked the end of the five day steroid pulse. It seems to be getting harder with the mood swings, odd food cravings, mass consumption of food and sleepless nights. It was also difficult for Noelle. Noelle has not been to school yet this week and we are hoping to get her there today or tomorrow. Friday is her Christmas recital and we hope she feels up to the kindergarten performance of felice navidad.

We are glad to slam the lid on steroids for 2005 and can now start focusing on getting ready for Christmas. Since we still have no kitchen, Santa will have to choke down some store bought cookies. Moreover, our culinary contributions to the Christmas Eve feast of seven fishes will be nil. We have no idea who is going to make the bacala.

Many of our brave friends are in need of prayers including Please continue to pray for all the brave children fighting leukemia including: Alexia, who is in the ICU battling for her young life; Cameron; who got some awful news and now is battling ALL for the third time and Baby Donovan, who is recovering from a transplant and just turned 1.
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Friday, December 9, 2005 3:32 PM CST

Noelle had a clinic visit today. Her counts were pretty good so she got her shot of vincristine and began her five days of steroids (sheer joy). It will be yet another round of steroids without a kitchen. Pray she craves something we can cook in the microwave.

We also got a ton of snow today which made Noelle very happy because she loves snow.

Noelle update, December 7, 2005

This morning Noelle opened up the door to our room at 6:15 and announced "I am dressed and ready for school." Usually it takes pyrotechnics to awaken her and semi-pitched war fare to get her dressed so I am not certain what is happening to her. Also, as I fumbled for some coffee (a difficult trick in an unfinished kitchen) she asked "dad, can you explain again why Jesus died on the cross and this time in a way that I can understand?" To which I answered "ask your mother."

Noelle update December 6, 2005

What a difference a year makes. For some perspective, see the new photos in the photo album.

Noelle is doing pretty good and is feeling better. She had a busy weekend which was capped off with the clinic’s Christmas party on Sunday. It is fun and weird to see the parents and kids in a non clinic setting. Our kitchen project is just sputtering along but we are still hopeful to have it at least partially operational by Christmas.

Many of our brave friends are in need of prayers including Please continue to pray for all the brave children fighting leukemia including: Alexia, who is in the ICU battling for her young life; Keegan; Hunter; Cameron; who got some awful news and now is battling ALL for the third time and Baby Donovan, who is recovering from a transplant and is about to turn 1.
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Sunday, November 20, 2005 5:15 PM CST

Noelle update November 20, 2005

The steroids hit Noelle pretty hard last week. She missed school on Monday because it was spinal tap day, made it through Tuesday and then ½ day on Wednesday and that was all she could tolerate. Since she is still not feeling that swift she will not make it tomorrow either. Too bad because she enjoys school but never seems to make it more than two weeks in a row. To make matters worse, Noelle’s steroidal cravings were largely left unsatisfied due to a demolished kitchen which gave little opportunity for the creative dishes she so demands.

Please continue to pray for all the brave children fighting leukemia including :Keegan; Victor; Alexia; and Baby Donovan
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Sunday, November 20, 2005 5:15 PM CST

Noelle update November 20, 2005

The steroids hit Noelle pretty hard last week. She missed school on Monday because it was spinal tap day, made it through Tuesday and then ½ day on Wednesday and that was all she could tolerate. Since she is still not feeling that swift she will not make it tomorrow either. Too bad because she enjoys school but never seems to make it more than two weeks in a row. To make matters worse, Noelle’s steroidal cravings were largely left unsatisfied due to a demolished kitchen which gave little opportunity for the creative dishes she so demands.

Please continue to pray for all the brave children fighting leukemia including :Keegan; Victor; Alexia; and Baby Donovan
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Sunday, November 13, 2005 4:43 PM CST

Noelle update November 13, 2005

Noelle’s two week streak of attending school ends tomorrow since she has to go to the clinic for a spinal tap and other assorted fun and chemo. Also, Monday through Friday she will be on steroids. We are renovating our kitchen and have been without a kitchen or a laundry for two weeks now. Let’s hope her steroidal cravings include something from take out or that can be eaten cold.

It seems that many our fellow ALL sufferers are struggling right now. Please pray for Keegan; Victor; Alexia; and Baby Donovan
Also please pray for one of our dear friends who had brain surgery and needs follow-up treatment to deal with a brain tumor.

Tuesday, November 8, 2005 9:20 AM CST

Noelle update November 8, 2005

Noelle actually made it through an entire week of school last week. We are hoping she can do two in a row!! Today after school she will begin her Girl Scout career when she attends a Daisy Scout meeting. The synergy of girl scout cookies and steroidal rage does frighten me.

It seems like so many of our fellow leukemia warriors are having a tough time and need your prayers. These brave children include: Keegan, whose mom Audra got the doctor’s call that all of us dread; Victor who has overcome so much, including a cord blood transplant, but now faces new challenges; and Baby Donovan who is at Duke and is scheduled to undergo a transplant later this week. Please pray for them and all of those who are fighting this terrible disease.

Tuesday, November 1, 2005 10:09 AM CST

Noelle update November 1, 2005

Noelle had a pretty good Halloween. Her school had a parade, she got a trick or treat bag at the clinic and she did some trick or treatng around our neighborhood. Since we could not get organized and she is just making new friends, she had to go trick or treating with mom and dad. We promised her that next year she will be able to go with her friends. She asked "what if my counts are low?" We told her that next halloween (God willing) we will not be worried about counts and she will be all done with chemo. She excitedly replied "you mean I will be a normal kid?"

The big news on the medical front is that her counts are good. As a reward, she will get to recommnce her daily and weekly chemo. Also, keep the prayers coming, baby Donovan is in remission and the transplant is going to proceed!!

Noelle update October 30, 2005

Noelle still does not feel all that sharp. Her energy level is low and she had a tough time getting to sleep last night. At about 4 AM, she felt warm and her temperature was 100. We figured she was on the way to a fever and prepared for an ER visit. When we checked again a few hours later her temperature was, thank God, normal. She goes to clinic tomorrow for a CBC. We are hoping that we get good news.

Please remember some of our friends in your prayers. One of our dear friends had a brain tumor removed on Thursday. While the surgery went well, they still are awaiting the pathology report. Please pray for a good report. It seems like so many of our fellow leukemia warriors are having a tough time and need your prayers. These brave children include: Victor has overcome so much, including a cord blood transplant, but now faces new challenges; and Baby Donovan who is at Duke now striving to get into remission so he can undergo a transplant. Please pray for them and all of those who are fighting this terrible disease.

Monday, October 24, 2005 3:46 PM CDT

Monday, October 24, 2005 3:46 PM CDT

The good news is that Noelle's ANC has soared by 50 percent. The bad news is it is only 158 and she is still neutropenic. We will not even bother getting another CBC this week. Hopefully by next Monday her ANC will climb and she will be able to resume her chemo and go trick or treating!!

Sunday, October 23, 2005 5:36 PM CDT

We have to take Noelle back to the clinic tomorrow for a CBC. Even though all signs point to a slow recovery of her ANC, we hope that her counts have risen. We do not like these periods of held chemo and are anxious to restart her chemo regimen.

Also, please pray for a dear friend who is facing a serious health issue and has to make some important treatment decisions.

Saturday, October 22, 2005 10:46 AM CDT

Noelle's ANC dropped again to 106. We are now beyond SF and TNT and are just plain worrying about her. She has been off of chemo (except for prednisone and vincristine) for over week now so we are anxious to get her back on schedule.

Friday, October 21, 2005 12:46 AM CDT

Noelle's ANC dropped again and is now 120. There is little hope that it will rise anytime soon. Since putting a neutropenic 5 year old on a transcontinental flight seems stupid, the TNT trip will not happen. Hopefully Claire can jump into another TNT marathon so all of her hard work and training will not be wasted.

Since Noelle never engages in self-pity, we are taking her lead and are trying not to appear too upset or bitter.

Thursday, October 20, 2005 7:16 PM CDT

Noelle was chugging along today with no real fever since a 38.3C or 101F at 4 AM until about 4 PM when bam she hit 38.8C or 101.8F. We are still praying for a late discharege tomorrow or an early on on Saturday!!

Thursday, October 20, 2005 1:16 PM CDT

Today, Noelle's counts were still low while her fever remains somewhat high. Her ANC is stuck at a paltry 252. As such, no discharge today. We hope that she feels well enough to get home tomorrow but we do not know if that will happen.

Wednesday, October 19, 2005 4:46 PM CDT

One cannot expect such a cruel disease to respect one's plans. So why am I surprised that today Noelle's temperature has risen to 101 while her ANC has fallen to 252. That has earned her at least one night in the hospital and may make Claire's six months of marathon training futile.

Tuesday, October 18, 2005 5:46 AM CDT

Much to her disappointment, Noelle has avoided a fever and hospital stay. She loves the attention she gets whne she is inpatient. I blame child life for making the hospital just too much fun for a five year old!!!

Today is the last day of this month's five days of steroids. Dare I say that it has not been too awful. The prednisone seems a little easier on Noelle than the dexamethasone. The other chemo is being held pending a CBC on Thursday. We are now into single digits -- with the grace of God Noelle's treatment will end in nine months, which means nine more steroid pulses, five more spinal taps, etc.

Noelle continues to enjoy school and even though she awoke late yesterday she insisted on going. She even brought a book to read to the class. We bought her a series of 20 learn to read books on Sunday. She read 16 of them by Sunday night.

As in all epic struggles, the leukemia war has many heros. Check out Clare's web site. Her brave family is leaving her site up and are extracting hope and bravery from Clare's tragic passing. Pray for them and all parents who are faced with empty beds and cribs.

Saturday, October 15, 2005 8:06 AM CDT

Noelle update October 15, 2005

Noelle went to the clinic yesterday. Her ANC was only 320, whihc means she is neutropenic. She was also flirting with a fever, running temps in the 99s. She got her vincristine shot and started her steroid pulse but the other chemo is being held. So this weekend we are minding the formula that dictates a temp > 100.5 + ANC < 500 = hospital stay. If we avoid a fever she will go back to clinic on Thursday for a count check.

Tuesday, October 11, 2005 11:04 AM CDT

Noelle's world can be a pretty interesting place. This morning, after a four day weekend and fighting to get to sleep by 10 PM last night, she was less than cooperative when I tried to awaken her. After several attempts and some drama we got her off to school. When I told her we had to hurry or she would be late, she scolded me and told me that it was my fault since I did not wake her up early enough.

The other day when I made an ill advised comment referring to other kids as "normal" she snapped "I am a normal kid too." She has also been delighted that her hair is almost back to pre-leukemia length.

Of course, even though she feels pretty good now, we are on a collision course with steroids. She will start her five day pulse on Friday.

Please continue to pray for Noelle and all of the other CKs.

Tuesday, October 4, 2005 11:44 AM CDT

Noelle update October 4, 2005

Noelle has really taken to kindergarten. It is so great that she can be with children her own age. She seems to be feeling pretty well, although she complains about aches and pains every now and then. She is also somewhat of a celebrity. The local paper did a story about her, complete with her picture on the cover of the magazine section. The pictures above are from the article which focused on “Team Noelle” - five women who are running the Nike race for TNT in honor of Noelle. When I figure out how to do it, I will post the article here.

Friday, September 30, 2005 3:45 PM CDT

Sweet and brave little Clare suffers no more. After receiving a BMT in July she never left the hospital and was in PICU since August. She leaves behind countless people who were moved to tears by her bravery and grace. She is in a better place having left us to ask "why God why?" Please pray for her family.

Saturday, September 24, 2005 8:02 PM CDT

Noelle update September 24, 2005

We are at day 4 of 5 for Noelle’s September steroid pulse. As only CK parents will understand, that means that a Saturday night outing involves nothing more than a trip to the supermarket to futilely procure just the right food to satisfy the insatiable steroidal food cravings. As Noelle and I were walking down the aisles she was amazed by all the pink ribbons, pink M&Ms pink flowers etc. Noelle’s observations were remarkable. She was curious as to what disease the pink ribbons commemorate. She said that it must be worse than leukemia because it sure seems to have more ribbons and gets more attention than leukemia. I told her that October was breast cancer awareness month and that September was childhood cancer awareness month. She asked why there were no ribbons for leukemia and then answering her own question, opined that leukemia is rare. She also offered that she was going to write about what it is like to have leukemia so someday people will understand.


Thursday, September 22, 2005 4:02 AM CDT

Yesterday Noelle got general anesthesia for her spinal tap. She must endure these every two months. Since she finishes treatment on July 21, 2006, we can almost begin to count how many spinals she has left to endure -- 5 (with the grace of God). She also got an IV of vincristine and started her steroid pulse. The doctors have switched her steroid from decadron to prednisone. The decadron caused her severe leg pains so we hope the prednisone is easier on her.

The worse thing about yesterday was seeing her cry because she was missing school.

Tuesday, September 20, 2005 4:02 AM CDT

I must begin by asking that you pray for all of the brave little children who are stuggling with this awful disease particularly Devon, Clare and Baby Donovan.

Noelle has adjusted very well to kindergarten. Yesterday marked the beginning of full day classes, 7:45 AM until 2:15 PM. So far she has been arising without a problem. Unfortunately tomorrow we are back to reality, or rather this alternative reality/nightmare that we have been living over the last 1 1/2 years. Tomorrow she goes to clinic for a methotrexate spinal injection, a vincristine IV injection and then 5 days of steroids.

We are hoping that she does not miss too much school but lately she has been having such a tough time with the steroidal side effects.

Also, at school she is displaying stubborness and gets seriously annoyed whenever the teacher corrects her. Since those personality traits are not evident in either of parents we cannot blame genetics but assume it is another side effect of the chemo.

Tuesday, September 13, 2005 8:00 PM CDT

The life of an ALL parent is full of goals and milestones usually centered on blood tests, chemotherapy, spinal taps, bone marrow aspirations, etc. For a change, yesterday we hit one such milestone unrelated to cancer. For yesterday was Noelle’s very first day of kindergarten. It was a day that I feared would never come when I first heard that she had cancer.

Of course because it is Noelle, who has lost over a year of her childhood, kindergarten is no challenge compared to IVs, LPs, BMAs and the downing of methotrexate, 6-mp or bactrim pills. She already wants to ask the teacher if she can tutor the other children. She is also getting her first good dose of Catholic education. She came home demonstrating the sign of the cross and seemed amazed that the school had some “real nuns”.

It is hard not to think of our friends whose children would love the opportunity to attend school such as Devon and Clare. Please remember them in your prayers.

Sunday, September 11, 2005 7:20 AM CDT

Today of course marks a somber day. It is hard to imagine the vileness of the savages that could even contemplate much less plan and execute the September 11 attacks. It is also hard to watch our fellow Americans suffer in the wake of Katrina. These events remind us that childhood cancer is just one form of agony and that we CK parents are not alone in our suffering.

Our suffering is, however, much more personal and lonely. The news media crammed with sensational images of floods and destruction never even mentions that September is Childhood Cancer awareness month. The media has never called for the head of a federal bureaucrat because childhood leukemia remains a child killer and in a decade there has only been one new drug approved to treat it. No "stars" run telethon to raise money to cure our children's illnesses or to treat our broken hearts and lives. Our churches do not bother taking special collections to raise funds for childhood cancer victims and their families. Relatives and friends do not call or check in on us to offer emotional or tangible support.

Through it all though we count our blessings and realize that others have it far worse than us. We see how sad and horrible the world is and hold our precious children even closer and thank God for everyday that he keeps their terrible diseases at bay.

Saturday, September 10, 2005 9:20 AM CDT

Noelle seems to be doing okay at least mentally. Her legs still seem a little tired and sore. It is taking her longer and longer to bounce back from her steroids and I think there is a cumulative effect. She is as excited as can be about starting kindergarten on Monday. We will see how thrilled she is to start school at 7:45 AM!! On most days, she is not even rolling over for the first time before 8:00 AM.

If you want to see parental love and childhood courage visit Clare's Page. Brave little Clare had a BMT and has been in the PICU battling a serious lung problem. Please keep her in your prayers and on Monday at 10:00 AM EDT please stop what you are doing for one minute and say a pray for Clare.

Tuesday, September 6, 2005 7:41 PM CDT

Noelle update September 6, 2005

On Saturday we took Noelle in to see a Broadway play. Beauty and the Beast was a big hit with Noelle. It was a great escape for her. During the play, she was not a 5 year old battling cancer with legs gnarled from 17 months of chemotherapy; instead she was just a 5 year old whose face was aglow every time Belle was on stage. A 5 year old that dove onto her daddy’s willing (and ample) lap for comfort and security during scenes with the beast or wolves.

The rest of the weekend was less of a hit with Noelle. On Sunday, we took her to field trials for sheep dogs at a nearby historical farm. She found it uninteresting and wanted to collect eggs from the hens and milk the cows instead. Germaphobia took over and she was forced to settle for some churning of butter.

On Monday we went to the park and then to a local fair. The ancient and decrepit rides were enough to entertain Noelle. But more importantly they served steamed clams and she won a stuffed animal.

Friday, September 2, 2005 9:32 PM CDT

Noelle has been having a tough time coming off the steroids. She has been complaining about leg pain and cannot stand still. Claire took her to the clinic where she heard that it could be muscle cramping caused by dexamethasone withdrawal or a touch of avascular necrosis (YIKES!!). So we are in wait and see mode. She seems okay to me and even rode her bike in the park tonight.

Tomorrow we are surprising her and taking her into NYC to see Beauty and the Beast on Broadway. We did not tell her because we figured she would get so excited she would never get to sleep tonight. Of course, even though she is unaware of tomorrow's plans, she is still awake at 10:30.

Wednesday, August 31, 2005 2:06 PM CDT

Noelle update August 31, 2005

Once again we are reminded that self pity is a selfish emotion. We often think that those of us who are dealing with childhood cancer, have a lock on suffering. Katrina is yet another reminder that agony comes in many forms and effects even those who are not suffering with leukemia.

Noelle is, dare I say, doing pretty good. Her more pleasant side is emerging from the steroidal stupor. She is also very excited about starting kindergarten, even though she often says she is ready for second grade – or college. The minimal residual disease test results came back today and they were negative. In our world negative is good.

Please pray for Noelle and all those suffering from Katrina and otherwise.

Sunday, August 28, 2005 9:15 AM CDT

Noelle update August 28, 2005

We are just settling back into the regular cycles of our new lives. Today marks day 5 of August’s 5 day dexamethasone pulse. Just like all the other pulses, dad is relegated to the guest room and the kitchen is a buzz with non stop cooking. Bacon seems to be the preferred food this time.

Noelle did great at the TNT event on Thursday night. She was a little shy and nervous. Fortunately, Jenn was there so Noelle was occupied. She is a child life specialist and marathon participant and Noelle adores her.

Please remember Noelle and all of the other children facing serious illnesses. Also, do not forget that September is childhood cancer awareness month.

Wednesday, August 24, 2005 2:43 PM CDT

Noelle had her normally scheduled monthly clinic visit today. She still seems to be feeling the effects of that virus as her ANC was only 600. We are, however, still proceeding with her full dosages of chemo so today she got her shot of mean cristine and will begin her even meaner five day steroid pulse. Tomorrow night she is being introduced as the Honored Teammate for the Northern New Jersey Leukemia and Lymphoma Society. We are hopeful that we can get through our speech without crying and that Noelle can get through the night without screaming.

Please remember all of out little fiends, many of whom seem to be struggling right now.

Sunday, August 21, 2005 8:54 PM CDT

For the first time in over a month, we have enjoyed three days not worrying about Noelle. We also, as weird as it may sound, appreciate the fact that she is back on her daily oral chemo. Of course this week is a steroid week so the fun will not last. Noelle has a big week ahead of her and cannot afford to be too crabby from the steroids. She has to meet with her kindergarten teacher on Tuesday and Thursday she is being introduced as the Honored teammate for the Northern NJ TNT.

Please continue to pray for Noelle and the other brave children battling cancer.

Thursday, August 18, 2005 1:18 PM CDT

ALL CLEAR!!!! Just got the call Noelle's marrow is clear. Thank you for your thoughts and prayers.

Wednesday, August 17, 2005 4:48 PM CDT

Noelle had her BMA this morning but we will not get the results until tomorrow afternoon. Her counts were very good and have risen since Monday. She is no longer neutropenic. The doctors seem even more confident that it is the virus but we are still anxious to hear it officially. Please pray for Noelle and the children battling this awful beast particularly Baby Donovan

Monday, August 15, 2005 3:48 PM CDT

Noelle went to the clinic today and learned that her ANC is still low and even dropped since Friday. All of her other counts (hemoglobin and platelets) look good. But since she has been off of chemo for over two weeks she will have a BMA on Wednesday to rule out the unthinkable. The doctors seem pretty confident that she is 'just' suffering the effects of a nasty virus. Please pray that they are right.

Friday, August 12, 2005 8:12PM CDT

Still no chemo. While most of Noelle's counts are pretty good she is still neutropenic. Her ANC dropped a few points to 399. We will try again on Monday. Since we are entering the second week of neurtopenia and no chemo, we are getting a little nervous.

Wednesday, August 10, 2005 2:47 PM CDT

The results of Noelle's CBC shows that she is still neutropenic with an ANC of 414. We will still hold chemo and go back Friday.

Monday, August 8, 2005 8:07 PM CDT

Noelle does not have an infection. Apparently, the culture growth is attributable to a contaminated sample. Good thing cause Noelle was not enjoying the four times a day nasty smelling vile tasting antibiotic. As a warm up to next year's (please God) massive chemo dump, I even let her flush the remaining antibiotic down the drain.

She is still off of chemo since her ANC is only 200. All her other counts look good and we hope that Wednesday's blood counts will show an ANC of above 500.

Sunday, August 7, 2005 4:00 PM CDT

So far Noelle's cultures taken yesterday are negative. We were thereby spared another visit to the hospital today. She goes tomorrow for another CBC and culture.

Saturday, August 6, 2005 8:45 PM CDT

Just to show me how resilent she really is, Noelle insisted on accompanying me on a super market run. Since it was on the late side, I knew it would be pretty empty. Noelle further insisted on wearing her leopard pajama shorts with pink leopard trim tank top, slippers and her faux leopard bath robe. She was quite a vision as she skipped down the aisles.

Saturday, August 6, 2005 3:15 PM CDT

We just got home from the ER. Noelle got an IV antibiotic. We should hear by tomorrow if Noelle's cultures grow anything.

Saturday, August 6, 2005 9:29 AM CDT

Another Saturday and another trip to the ER. Noelle's onc called and said that Thursday's cultures grew something. She seems to think that it is a skin borne bacteria that may be caused by contamination from Thursday's blood draw. We have to go for more blood tests and an antibiotic. If her culures continue to grow, she will be admitted tomorrow. Please pray that it is nothing serious.

Wednesday, August 3, 2005 5:27 PM CDT

Freedom! We got a conditional discharge. That means Noelle must got back to the clinic tomorrow and Friday for antibiotics, CBC and cultures.

Tuesday, August 2, 2005 6:45 PM CDT

The beat goes on. Noelle is still running a fever. She takes some tylenol that knocks it down and then some 6 or 7 hours later it is back to 102 or so. Fortunately, except for her ANC which is a paltry 210, all of her counts are good. The doctors think it is a virus and that it will just have to run its course. They are considering releasing us and treating her outpatient. Please pray that her fever comes down soon.

Noelle update August 1, 2005 10:45 AM CDT

Noelle is still running a fever of about 101.6 and her ANC has now dropped to 220. Since she needs to be fever free for 24 hours before discharge, we are now hoping to get released on Wednesday. The docs seem to think that it is a virus since nothing has grown in her cultures.

Noelle update July 31, 2005 7:58 PM CDT

Noelle still has a fever but it is not spiking as high as yesterday. Today it hit a high of 101.9. Also, her ANC has dropped to 480 so now she is neutropenic. It all means she will be in the hospital at least until Tuesday.

Noelle update July 31, 2005 7:15 AM CDT

Noelle spiked a pretty good fever last night of almost 103. We are awaiting the results of this mornings CBC and the blood cultures. We pray it is nothing serious.

Noelle update July 30, 2005

Well we were just rolling along. Noelle has not had an inpatient stay since Easter --- until today. She awoke with a low grade fever that spent the morning bouncing around (100.9 - 100.3 - 98.8 - 100.8) until she finally hit 101.2. After about 4 hours in the ER she got admitted. Her ANC is borderline at 540 and aside from the fever she feels pretty good.

Hopefully this will be a short stay. We will keep you posted.

Thursday, July 28, 2005 8:16 AM CDT

Noelle update July 28, 2005

This month's steroid pulse seems even tougher on little Noelle than the others. She is just an eating and screaming machine. Thankfully this pulse ends tomorrow and (please God) next year at this time we will be off chemo.

Noelle is an honored guest for TNT. We attended a meeting on Tuesday. I had written a long pontificating speech but got entirely too choked up to deliver it. It is still painful to talk about Noelle's leukemia but I am going to try again at a meeting tonight.

Noelle update July 26, 2005

The clinic yesterday was even more hellish than usual. A lightening strike knocked out an electrical transformer so the hospital was on emergency power for much of the morning. Even when the power returned the air conditioning never seemed to get going. She it was a hot a sticky visit. It was also extremely busy and it seemed that some patients were in substantial distress.

The food selection for this round of steroids is a surprising choice – the corn dog. Since we live in New Jersey and not Texas it is a surprising choice. Noelle’s mood swings while evident have not yet reached their maximum power.

Please remember Dusttin and his family in your prayers. Death be not so proud because he will continue to inspire us for much longer than his short stay here.

Monday, July 25, 2005 7:38 PM CDT

I am sick of being reminded once again that: (i) there is no such thing as good leukemia; (ii) the “cure” rate for ALL is not high enough; (iii) poisoning toddlers with chemotherapy, steroids and radiation is barbaric and we must find a better way to treat this disease; and (iv) in the circle of life, mothers should not bury their children. The most adorable little 5 year old boy with an impish smile named Dusttin is being laid to rest tomorrow. Aside from his web page http://www2.caringbridge.org/canada/dusttin/ I never met him. He was a sweet and brave little boy whose passing affects all of us.

Please pray for his family.

Thursday, July 21, 2005 6:50 AM CDT

Noelle update July 21, 2005

We have no idea how ALL and its treatment have affected Noelle's assertiveness. She expects everyone to obey her commands. Benevolent dictator that she is, she also tempers her direction with a little logic and humor. Last night she insisted that the TV be turned to Disney instead of ESPN. When ESPN turned to coverage of the World Series of Poker, she promptly opined that the channel had to be changed because little girls should not watch poker. Being overmatched by a five year old is humbling.

Noelle update July 18, 2005

If we were not already getting anxious about next Monday’s spinal tap and start of the five day steroid pulse, we would really be enjoying this week. Noelle had a ball at camp last week and this week she has cooking and crayon and swimming classes at the Y. While we have not gotten any official word, we believe and pray that Noelle’s treatment will end next July. It is starting to get exciting.

Claire continues to train for her Team in Training Marathon and is approaching 20 percent of her fund raising goal. Check out her site at Claire's TNT Page.

Thanks for checking in on Noelle and please remember her and her compatriots in your prayers.

Monday, July 11, 2005 7:26 AM CDT

Off to camp!! While it is only a day camp at the Kirby center where Noelle attended pre-school, she is very excited. It is steaming hot though so we hope she does not overheat.

We have another two weeks before Noelle's clinic visit for a spinal tap, vincristine and five days of steroids.

On the TNT front, Noelle has been selected as an honored teammate for the winter events. That means we have to attend kick off and other meetings, while trying to talk about Noelle and her ordeal without getting all puddly. That should be interesting. Claire's fundraising for the marathon seems stuck at about 12% of her target. So we are planning some events to kick it up.

Otherwise life has been uneventful, which to paraphrase our favorite ex-con home making expert, is a good thing.

Thanks for checking in on Noelle.

Friday, July 1, 2005 10:11 PM CDT

Well today we slammed the lid on another five day steroid pulse. I think we are actually heading towards the one year left in treatment mark (I believe it is July 21, 2006 but that is only my guess.) This time she did not crave macaroni and cheese but today she did polish off a heaping plate of cockles with garlic and cilantro.

Poor Noelle get so emotional and upset and knows that it is the dexamethasone that is making her feel lousy. She wanted to know why she has to take it since it does not make her feel well. I was about to explain that the steroid induces apoptosis (programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells) in leukemia cells, but I was afraid she would understand me. When her steroid moodiness hits its peak, day 4 and 5, she becomes incredibly clingy towards her mother and very angry towards her father. Oh well, at least I am getting trained for her teen years.

Please continue to pray for Noelle and all of the similarly afflicted children.

Happy 4th of July!!!

Wednesday, June 29, 2005 12:01 PMCDT

Noelle update June 29, 2005

A note to all you fellow CK parents – we love you and are very grateful for your donations to Claire’s TNT effort. Since we fully appreciate the emotional, physical and financial toll that leukemia extracts from all of us, we do not expect any of you to donate, but thank you just the same.

Noelle went to clinic on Monday for counts and IV “mean Christine” (vincristine). She also started her five day steroid pulse. Her counts were good and she seems to be doing pretty good.

This month, however, she reacted the second Claire opened the bottle of dexamethasone. She is getting to smart and understand that it is the steroids that make her feel lousy. She has been having trouble focusing and really struggles with her moodiness.

Noelle update June 25, 2005

The money is just pouring into Claire’s TNT coffers. She has reached almost 1f her goal. Actually the one donation of $100 is very significant to us. It comes from a CK mom whose little daughter is just about one year behind us in the tour of Hades. That means she is probably in the IM or DI phase. We remember all too well how hard it was back then and we pray that she and all of our fellow travelers get through this journey with great success and a minimum of discomfort. LTM, while no walk in the park (Noelle still takes almost 30 pills during an "easy" weeks and almost 40 during steroid weeks, along with monthly IV injections and bi-monthly spinal injections of chemo) is much easier and has allowed us to live an almost normal life again.

Noelle, just in time for next weeks steroidal hell, is doing pretty well. Her occasional limps and pains have been attributed to normal childhood bumps and bruises. The orthopedist reminded us that even normal five year olds get muscle pulls. Also, the orthopedist’s assistant is an ALL survivor and I think it was good for Noelle to meet another person with leukemia.

Even though we ALL parents are in our own special hell, we are not alone. My 34 year old cousin was buried on Thursday after a spirited fight with advanced cancer. It was an incredibly sad event and his mother has been devastated by this tragedy. I pray that her grief is soon replaced by happy memories.

Thursday, June 23, 2005 6:44 PM CDT

Noelle had another visit with the orthopedist today. The doctor thinks she is doing okay. Noelle is, however, very upset that her mom's TNT page still has a total of $0 in donations. Please feel free to visit Claire's TNT page and donate.

Noelle update June 19, 2005

Noelle has been non-stop. Thursday she graduated from her pre-school. That was a bitter sweet day since the Kirby center has been such a great place for her. We are also forever grateful to the great staff and teachers who were so kind to Noelle. Thursday night she was a guest at a Leukemia Society function. Saturday she attended a birthday party and her dance recital. In between she has been a swimming machine in her little blow up pool. Basically, she wants to be just a normal five year old but her consumption of 27 pills weekly reminds her she is not.

Please continue to pray for Noelle and do not forget the others who are also joined in this battle, particularly our friend Victor who more than a month after transplant continues to battle graft v host disease.

Claire is running the Nike 26.2 marathon this year as part of Team in Training. Please visit her TNT page. Claire's TNT Page

Sunday, June 12, 2005 8:42 AM CDT

Noelle update June 12, 2005

Noelle seems to be doing pretty good. Yesterday she insisted that we take her to the town pool for a swim. Although the pool is kept very clean, we still worry about germs. Unlike last summer, however, her counts are pretty good and we can not keep her in a cocoon.
She continues to have some sporadic leg pain which we attribute to the osteopenia yet another side effect of the wonderful steroids.

She has a busy week ahead of her which will include graduation from pre-school, a Leukemia & Lymphoma Society event at which she and other cancer survivors will be recognized and a dance recital. She really has no more time for this disease and all that nasty chemo.

Please continue to pray for Noelle and do not forget the others who are also joined in this battle, particularly our friend Victor who more than a month after transplant continues to battle graft v host disease.

Monday, June 6, 2005 6:10 PM CDT

Noelle update June 6, 2005

We just got back from the pediatric orthopedist. He sees no evidence of AVN. We are cancelling the MRI. Things always look a little brighter once the steroid pulse ceases.

Noelle update June 4, 2005

This month's five day steroid pulse thankfully ends tomorrow. This has the unintended consequence of making us wish that the weekend was over. Noelle has been her special steroidal self, having the attention span of a flea, devouring a box car of velveeta macaroni and cheese and insisting that the "sleeping arrangements" include dad in the guest room. Aside from chuckling at her expansive vocabuary (how many five year olds throw the word arrangements around) it is an unhumorous time and the dreary rainy weather is apropos.

Claire succeeded in getting an appointment for the pediatric orthopedic surgeon on Monday and an MRI on Wednesday. Originally they were scheduled for June 27 and July 21 respectively. That would have left way too much fretting time. The MRI sounds like it is going to be yet another miserable event for Noelle to get through. It requires that she go under general anesthesia in order to insure that she remain still. We really want an answer on the AVN issue and have read that, like most things, early detection is better than late detection.

While we still want your prayers for Noelle we also do not want to forget all of our brave comrades-in-arms. For example, Victor had a stem cell transplant 24 days ago he continues to battle on and hopefully will be home soon.

Noelle update June 2, 2005

Noelle had a pretty full day at the clinic yesterday. First she had a spinal tap injection of methotrexate under general anesthesia. She also got her IV shot if vincristine. Next, since her leg still hurts, she had to get another x-ray. The x-ray was inconclusive so she now must get an MRI. The doctors are still concerned that she may have an early onset of AVN . Just another thing to worry about. Further, she started her five day steroid pulse, which as a reward for getting taller, has been increased by 0.5mgs/day.

Please continue to pray for Noelle and throw in a few extra ones if you have the chance.

Wednesday, May 25, 2005 6:31 AM CDT

Noelle update May 25, 2005

Suddenly Noelle is listening to music other than Elvis and Hank Jr. and I am not sure that I like it. She has been fascinated by the Cheetah girls who are not even a real band. Since the very first album that I ever purchased was the Monkeys perhaps this is genetic? As I watch her dance and listen to her sing to the Cheetah hit “Cinderella”, it occurred to me that Noelle was singing about herself. The lyrics include: “I can slay, my own dragons I can dream, my own dreams my knight in shining armor is me”.

Noelle is doing pretty well. Her limp is almost gone and she has even returned to dance and ballet classes. Thank you for checking on and praying for Noelle.

Saturday, May 21, 2005 12:44 AM CDT

Noelle update May 21, 2005

Noelle’s leg is getting better!! So it looks like it was “just” a muscle pull. Her walking has considerably improved and her ear seems a little better too. The OTC cold medicine that we have been giving her for her swimmer’s ear is making her drowsy though, so she does not have her old oomph.

Her observations are quite unbelievable. She commented the other day that “children do not die because God does not want young people but only takes older people like pop-pop.” If only she were right.

Please continue to pray for Noelle and all the other brave children.

Friday, May 20, 2005 5:21 PM CDT

Noelle update May 20, 2005

Noelle seems to be getting over her limp. Her doctor saw her today and noticed the improvement. She does have an ear ache caused by what looks to be the beginning of swimmer's ear. We have to watch her and give her some decongestant but she should be fine. Thanks for checking in on her and have a great weekend.

Noelle update May 16, 2005

Noelle had a pretty good weekend except she developed a limp on Saturday. Since she did not appear any better today, we took her to the clinic for an examination. Limping and associated leg pain could be caused by several things: (i) neuropathy – a side effect of vincristine; (ii) fracture or bone injury –side effects of dexamethasone; (iii) acute vascular necrosis (AVN) of the pelvis – a particularly odious side effect of dexamethasone; or (iv) plain old muscle or bone injury caused by being a five year old. After numerous x-rays of her pelvis (Noelle thought it was funny that it rhymed with Elvis) and other bones, we are still not certain of the cause. The radiologist thought that an MRI may be necessary to ascertain whether or not Noelle has early AVN which would not show up on the x-ray. We are going to wait a week and see how she feels. Hopefully it is just a muscle pull.

Noelle update May 11, 2005

The fritos have all been eaten. The few remaining boxes of Velveeta mac and cheese have been put away. The temper tantrums have subsided. All of this means that we have concluded yet another monthly pulse of mean pills. We wonder sometimes if the person who devised the "hey let's give five year olds steroids" scheme is really some sort of evil genius who hates parents and delights in their torture. (Actually I am assured that the dexamethasone is a very effective anti-leukemia agent.)

Noelle still has 15 or so months remaining in her treatment. Please continue to pray for her and the other brave children including Victor, a terrific little boy who underwent a stem cell transplant yesterday.

Noelle update May 5, 2005

Noelle did fine at the clinic yesterday. Her counts were good and she got her monthly shot of vincristine. We also began our monthly descent into steroidal purgatory. We are anxiously waiting to learn what food she will be craving this month. Looks like Frito Lays are in the running.

Saturday, April 30, 2005 6:14 PM CDT

Noelle update April 30, 2005

Noelle has had a pretty good couple of weeks. She seems to be doing and feeling well. She has to go to clinic on Wednesday for her monthly blood work and injection of vincristine. That will also mark the beginning of another five day pulse of the steroid dexamethasone(e.g. mean pills). Please continue to pray for her.

We are also mindful of the suffering of many others and ask that you remember them in your prayers. They include: Molly who now has to continue her battle ALL without her dear dad; Megan who on the eve of finishing her long and difficult treatment regimen lost her granddad; and beautiful Lexy who inspired us all with her determined battle with neuroblastoma and just earned her angel wings.

Saturday, April 16, 2005 9:25 PM CDT

NOELLELOISE

Through the generosity of Cherished Creations, Inc. Noelle’s wish of staying at the Plaza in New York City was granted. Since the hotel is closing at the end of this month for a massive renovation, including the conversion of most of the hotel to condos, we did not have much time to spare. We drove into NYC on Friday afternoon in my new car, which (in addition to a Bose® sound system which allows Noelle to enjoy Elvis at top volume) has a DVD player. Noelle of course watched an Eloise movie and was speechless when the Plaza attendant opened her car door and greeted her as if she were a princess.

We did all the tourist stuff, had high tea and room service. Noelle spent most of her time in search of Eloise. Ironically, whether it was a doorman, a receptionist, a maid or a concierge, Noelle always got the same answer to her Eloise question “you just missed her; I just saw her going out the door.” To add to the mystery of her elusiveness, Eloise left Noelle notes at the front desk and in our suite. Noelle left a note and a picture she drew for Eloise at the concierge.

We had a great time and Noelle enjoyed being a little girl and not a cancer patient. We can neither totally relax nor forget that many of our friends are having a tough time with the awful disease that has brought us together. Please remember all those afflicted with childhood cancers and their families.

Saturday, April 9, 2005 8:31 AM CDT

Noelle update April 9, 2005

Noelle's disposition is now the opposite of the nice warm weather. The steroids have once again plunged her into misery. She obviously knows it is the steroids that are affected her mood and has said "I hate the way these make me feel and I hate you mom for making me take these pills." At least she is not yelling at her dad.

Noelle update April 6, 2005

After a two week hiatus, Noelle reentered the world of chemo. Her rising ANC allowed her to get her spinal et al. today. More significantly, since this was the one year anniversary of remission, her spinals will now be administered at eight weeks increments. She was so good and patient today at the clinic that I took her out for ice cream (yes spring has arrived) and even acceded to her demands (okay she started the steroids and I am afraid of her even though so far she has been good) and blasted Elvis’ “Hunk of Burning love” on the Bose sound system in my new car.

Noelle update April 5, 2005

Noelle is enjoying her two week freedom from chemo. We go to the clinic tomorrow. Hopefully that virus has run its course and Noelle's anc will be high enough to allow her to restart her chemo. She will get a methotrexate spinal tap, IV vincristine, oral 6-MP and of course steroids.

Our friend Donna and sweet little Molly still need our prayers. They are dealing with leukemia and the loss of their husband and father.

Wednesday, March 30, 2005 10:06 AM CST

Noelle's clinic visit today revealed that her ANC was 102. The doctor believes that the virus is still in her system. Her low ANC means no chemo for at least another week and will earn her another hospital stay if she gets a fever.

One of our online friends and fellow CK parent lost her husband yesterday in a tragic accident. Please remember her and her family in your prayers.

Sunday, March 27, 2005 12:33 PM CST

Happy Easter. Noelle was released from the hospital this morning so she is spending the day at home. She also will not have any chemo until at least Wednesday. We are happy that we are home for Easter. We are however saddened that because of childhood cancer, other children are spending Easter in the hospital and other parents are spending Easter alone.

Saturday, March 26, 2005 2:44 PM CST

Noelle update March 26, 2005

The ANC dance is not working!! Noelle's anc is only 145. Maybe the Easter bunny will bring us some neutrophils!! Her fever was hoovering around 99 so we are hoping that her fever will stay down.

Noelle update March 25, 2005

The good news is that it now appears that Noelle's arm/wrist is not broken. She had fallen on Sunday and was experiencing arm pain. Thanks to the steroids her bones have been weakened so they were very concerned.

She contiues to run fevers and her anc has dropped to 109. She will not be discharged until she goes 24 hours without a fever which means she is likely to still be in the hospital on Easter Sunday.


Noelle update March 24, 2005 11:44 AM CST

This morning Noelle's fever spiked up to 103.4 while her ANC has gone in the other direction and is down to 260. Not happy news and not just because it means its daddy's turn to sleep at the hospital tonight. Thankfully her cultures have not grown anything so far, so maybe it is just a rogue virus. Since they are unlikely to discharge her unless she is fever free for 24 hours we pray that the fever stays away so she can get home by Holy Saturday.

Noelle update March 23, 2005 9:44 PM CST

Noelle's fever spiked up to 102.6 tonight so she will be in the Hospital until at least Good Friday. It looks like her arm is not broken but it is swollen and it does still hurt.

Noelle update March 23, 2005 10:44 AM CST

It was one year ago today that we were told that Noelle almost certainly had leukemia. One year ago I knew nothing of absolute neutorphil counts. I now know that an ANC of less than 500 with a fever greater than 100.6 means at least one night in the hospital. Noelle's fever is 100.9 and her anc is 490 so she will be spending her "anniversary" in the same place where this crappy journey began. Also, since she was not having enough fun, she may have broken or at least severely sprained here arm/wrist. We are awaiting the x-ray results.

Noelle update March 20, 2005

We are stumbling towards Noelle’s awful anniversary. It is hard to imagine that last year at this time we knew almost nothing about leukemia and could not have even fathomed Noelle being diagnosed with this dreadful disease.

Noelle seems to be doing pretty good. Her behavior can be a little bizarre at times which is most evident by her odd taste in music. First of all she loves Elvis particularly “Hunk of burning love” which we must play for her every time she gets in the car. She is also a big fan of Hank junior. She has a dancing and singing Hank doll, which originally belonged to our dear friend Jim who must be laughing in heaven when he sees her play with it. She also commandeered a “Big & Rich” cd, originally given to us as a Christmas present, and blasts it from her play room all the time. Big & Rich is a country band whose songs include “Why does every body want to kick my A**.” (Hardly appropriate for a five year old but what the heck neither is chemotherapy?)

We have no idea how a little girl from New Jersey could develop an affinity for country western/rockabilly music. We suspect it is yet another side effect of the chemo.

Wednesday, March 16, 2005 6:05 AM CST

Noelle update March 16, 2005

We are reminded once again that life is precious and leukemia is cruel. A brave boy from our clinic just earned his angel wings. Van never lost his great sense of humor and always uplifted the spirits of everyone at the clinic. Please pray for him and his family.

Tuesday, March 8, 2005 2:39 PM CST

Noelle update March 8, 2005

Noelle is beginning to snap out of her steroidal funk. She still had trouble sleeping last night but she was at least a little more pleasant. Noelle still comes up with some funny lines. While explaining to me that the steroids just make her feel horrible, she opined that they should be called “mean pills”.

Noelle update March 6, 2005

Thankfully Noelle’s five day steroid pulse ended today. The dexamethasone is the most difficult of all the chemos because it disrupts all of our lives. Daddy gets tossed out of his bedroom, mommy suffers exhaustion from running a short order kitchen while tending to a demon and poor sweet little Noelle struggles with sleeplessness and mood swings. This month the food of choice was a rather pedestrian selection of roll with butter. As she consumed her fourth of the day Noelle commented “gee mom I think I am picking the bread and the butter this month.”

Earlier tonight she sat in her bed throwing things around her room. She paused long enough to question why she still did not feel good even though she had taken her last steroid dose. I tried to explain that the steroids were still in her system. She assumed that I meant that the pills were still in her tummy and had not yet dissolved. Explaining metabolism to a five year old is not easy.

Noelle update March 4, 2005

On Wednesday, Noelle received her monthly spinal and IV injections of chemo. Since next month marks her 1 year “anniversary”, the spinals will be reduced from every 4 weeks to every 6 or 8. The spinals are an unpleasant but necessary part of Noelle’s treatment and will hopefully prevent leukemia from reaching her central nervous system.

Wednesday also began her 5 day pulse of dexamethasone. The mood swings started early this month causing Noelle to have a screaming fit when she was dropped off at school on Thursday. She was so upset that we had to take her home. It looks like her food cravings include mussels and pork chops, although this morning she asked for garlic bread.

Her mind is still contemplating the passing of her granddad. She drew him a huge card and wrote him a song, which she will deliver to him via ground burial. She also is curious about when her treatment will stop. We told her she has another year (actually she has another 17 months) to go (God willing). She took it in stride and we told her that if she was a boy it would be another two years instead of one. Of course her follow up was why do boys go longer and I poached Kendrie’s mom’s line “because they are stinky”.

Please continue to pray for all the brave little children like Noelle who battle these diseases.

Tuesday, March 1, 2005 8:07 AM CST

Noelle update March 1, 2005

In a few weeks we will no longer be able to say to ourselves “gee to think that less than a year ago we did not know anything about leukemia….” One of our last memories of Noelle feeling well in the BL (before leukemia) time frame was in late February 2004 when we attended the boat show. She and her cousin frolicked from boat to boat pretending they were at sea. I remember her boundless energy as she ran from one overpriced boat to another as I tried to keep up.

Well Saturday night we attended this year’s show and Noelle seemed to have just as much energy and fun as she did last year. Aside from her short hair she showed no outward sign of her terrible ordeal. A few months ago we would not have believed that Noelle would ever be able to return to her BL life. It was impossible not to reflect on the past year and just how far this amazing 5 year old has come and how her cancer has not come close to dampening her joy de vie.

Friday, February 25, 2005 4:38 PM CST

Noelle update February 25, 2005

We were very worried about how Noelle would handle the loss of her pop-pop. Our concerns proved to unfounded. She has dealt with this loss like she has dealt with all the other pain in her young life - with humor, curiosity and cheerfulness. She even participated in the funeral by carrying the gifts, unconsecrated hosts, up to the altar. She was so proud of herself but not as proud as we are of her.

Naturally she had more than a few questions and observations. She wanted to know: what was in the big box [the casket]; if animals were buried in boxes too and horses must take huge boxes; why we were burying pop-pop in the ground; what we look like when we die; if pop-pop can now hear us every time we talk etc. Noelle is also writing a song for pop-pop and insisted that we buy roses so the house would look pretty in case pop-pop visits and wine with a picture of a loon on the label that would remind him of Canada.


Noelle update February 19, 2005

Noelle has learned yet another painful lesson about life and death. Her only remaining granddad passed away on Friday February 18, 2005. This morning she was pinning for him and lamented that she wished he was here to make her breakfast. We tried to explain that he is not suffering any longer, that she can talk to him whenever she wants and that he will be yet another angel to watch over her. Frank Collins obit

Noelle update Wednesday February 16, 2005

Noelle is striving to be a normal five year old. She even got to get away last weekend to visit her old friends Kathleen and Daniel, her first visit with them since diagnosis. She even got to spend two nights in a Ritz Carlton hotel while her dad attended a business seminar. Judging from the hotel receipt, she emulated her hero Eloise and partook of high tea, not to mention room service.

Unfortunately her only remaining granddad has taken gravely ill and we are visiting him now. Please remember him (and of course Noelle) in your prayers.

Wednesday, February 2, 2005 11:22 AM CST

Noelle update February 2, 2005

After inhaling a bowl of Velveeta macaroni and cheese (no other brand will do), mussels and some corn chips, Noelle profoundly asked “Hey am I on steroids, cause I sure feel like I am”. A year ago I never would have imagined that our five year old would even have to ask such a question.

She is however, having a decent week so far. On Monday she had her monthly vincristine (aka mean Christine) IV and her spinal tap injection of methotrexate. She did puke up one of her 6 MP pills last week, but has otherwise endured her oral medications without incident. She has been attending her preschool and has yet to turn into a complete steroidal monster. It seems like the adjustment to her steroids dosing (lower doses three times a day) is keeping her crazed behavior somewhat in check.

To us, long term maintenance seems like a breeze. The uninitiated, however, are always surprised when they learn that long term maintenance involves: spinal taps; different types of chemo given, daily, weekly and monthly; three day a week antibiotics; and of course the ever fun monthly steroids.

Please continue to keep Noelle in your prayers.

Friday, January 28, 2005 11:59 AM CST

Noelle is really enjoying herself. She had a ball at Disney on ice. It was so great to see that old ebullience come out. She stood up in front of her class and gave a description of the show. At least the ALL has not affected her self confidence. Noelle is also a snow bunny and would stay outside all day making snowgirls, snow angels etc. if allowed. Next week we reenter the world of steroids. She also will get her spinal injection of methotrexate as well as an IV dose of vincristine aka mean christine. Please continue to remember Noelle in your prayers.

Monday, January 24, 2005 8:25 PM CST

Noelle's counts were okay today so she is back on full dosages of chemo. She had a ball yesterday and today playing in the snow. Tomorrow, much to her delight, she will be back at the Kirby Center for school. To her even greater delight, tomorrow night we are going to see Disney on Ice!!!

Thanks for all the kind words and prayers. Please keep them coming.

Thursday, January 20, 2005 1:06PM CST

HOME!! Noelle got discharged today. the fever is gone. She is however neutropenic and her chemo is being held until at least Monday. Thank you for your prayers and kind thoughts.

Wednesday, January 19, 2005 3:23 PM CST

The criteria for Noelle's discharge is fever free for 24 hours. While her temp is down, it has not yet been 24 hours. She will therefore be in the hospital at least one more night. To add to the fun, we are now having our first snow of the season.

Please remember her in your prayers.

Tuesday, January 18, 2005 8:23 PM CST

Noelle (and Claire) are hunkering down for another night at Casa di Goryeb. Noelle seems to be feeling a little better at hopefully her fever will stay down. The doctor thinks it is a virus which will be confirmed when and if Noelle's blood cultures come back negative. Until then, she will get antibiotics as a precaution. Please keep up the prayers.

Noelle update January 18, 2005 9:42 AM CST

Noelle is still running a huge fever and her counts have crashed. Today she is getting a hemoglobin transfusion. The doctor feels that her LTM chemo was too strong and the dosages need to be adjusted downwards. For now she remains inpatient, is off chemo and getting IV fluids and antibiotics.

Please keep her in your prayers.

Noelle update January 17, 2005

Noelle did not feel well all day yesterday. Last night she flirted with a temperature of 101 degree. This morning when she awoke, it was 102.5 and then it hit 103.6 at the clinic. Her ANC is 400 (you may remember the formula of ANC < 500 plus temperature > 101 = inpatient stay).

Please pray that she feels better soon and does not have to spend too many nights in the hospital.

Thursday, January 13, 2005 5:56 AM CST

Noelle update January 13, 2005

Noelle is doing pretty well. The doctor’s suggestion to administer the steroids in three doses made the steroid week bearable. Also, Noelle is enjoying her return to pre-school. She really missed her friends and teachers. The school has been great and the teachers and nurse really watch out for her and tell us about every illness there. A few kids in the other classes have strep throat and Noelle is worried that they will get leukemia. Since her diagnoses of leukemia came within two weeks of a bout of strep, she assumes there is a connection.

Not surprisingly, she is now revolted by the sight of cheese doodles. We wonder what she will crave next month. Unlike our friend Ali in California, who craves strawberries, Noelle never seems to desire anything healthy.

Noelle is also as precocious as ever. She now reminds us to give her the 6 MP at night and has been taking her meds without complaint.

While to road ahead is still long and perilous our journey is well underway. Please keep Noelle in your prayers.

Saturday, January 8, 2005 1:22 PM CST

Noelle update January 8, 2005

CHEESE DOODLES!!! Cheese Doodles? Yes CHEESE DOODLES, not cheese puffs, not cheese crackers, not cheese crunches just CHEESE DOODLES and they had better not be too curly or there will be big trouble.

Thus went the week of steroids during month two of long term maintenance. Last month it was mussels and we can hardly wait to see what Noelle will crave next month. We should not complain because Noelle was actually fairly pleasant during this stretch of steroids. There was a tantrum or three but not of the ear drum piercing variety that we have come to expect.

You can also tell that Noelle has been playing with the background of her CB site. At least she dropped the fuchsia.

Tuesday, January 4, 2005 2:49 PM CST

Noelle update January 4, 2005

Happy New Year! Noelle got her year off with a bang yesterday - a spinal tap infusion with chemo, an IV injection of another chemo and five days of steroids - what a party animal. The news from the clinic was actually pretty good. We learned that our little friend Michael, who had a BMT in mid December, was discharged on Friday and is feeling good. He and his parents have endured a lot.

Once Noelle gets over her little cough, Noelle will be back to pre-school, hopefully this week. We also have to see how she handles the steroids. Her doctor has suggested that we spread the dosage over three increments so we may thereby avoid the mood swings and other fun side effects.

Thanks you for checking on Noelle and please keep the prayers coming.

Friday, December 31, 2004 7:45 AM CST

Noelle update December 31, 2004

Five years ago today we were at Overlook Hospital awaiting the arrival of Noelle. She was already one week late and the doctors said that there was no more room for her to move so she had to come out. Just after 2:00 PM they handed her to me for the first time and it was love at first sight.

Even from the beginning it was obvious (at least to me) that she was a remarkable and special child. Her very first word was "happy" and that aptly describes her personality. She has remained bright and happy even through her ordeal. Moreover, she has coped with her illness with bravery while never losing her sunny disposition. The last nine months of hell do not diminish but rather reinforce the joy and happiness she has delivered into our lives.

The terrible tsunamis remind us how lucky we are and that there are many other tragedies aside from leukemia. When you make New Year's wishes and say your prayers today please remember Noelle and the other children that are suffering from so many different reasons including disease and manmade and natural disasters.

HAPPY NEW YEAR and may 2005 bring you and your loved ones good health and happiness.

Noelle update December 30, 2004

As she zeros in on the big 5, Noelle has gotten even more fickle. Now the CB web page must have snowmen with fuscia print!! Noelle has a bit of a cold so she is resting up for her big day tomorrow. Her cousins are coming so it should be a big party.

Noelle update December 29, 2004

Noelle has taken a new interest in her CB page. She insisted that I change the background to fishes and the print to red. She also wants everyone to know that in 2 days she will be 5!!! Selecting a birthday present(s) is going to be a challenge. Judging from the stash she got on Christmas, there is precious little that she does not have.

Sunday, December 26, 2004 10:54 PM CST

Noelle had a great Christmas. She enjoyed the feast of the seven fishes on Christmas Eve. On Christmas day she was inundated with presents from Santa and her aunts and uncles.

Next up is her birthday. She will turn five on New Years eve.

Friday, December 24, 2004 9:32 AM CST

AND it came to pass, that in those days there went out a decree from Caesar Augustus, that the whole world should be enrolled. This enrolling was first made by Cyrinus, the governor of Syria. And all went to be enrolled, every one into his own city.

And Joseph also went up from Galilee, out of the city of Nazareth into Judea, to the city of David, which is called Bethlehem: because he was of the house and family of David, To be enrolled with Mary his espoused wife, who was with child.

And it came to pass, that when they were there, her days were accomplished, that she should be delivered. And she brought forth her firstborn son, and wrapped him up in swaddling clothes, and laid him in a manger; because there was no room for them in the inn.

And there were in the same country shepherds watching, and keeping the night watches over their flock. And behold an angel of the Lord stood by them, and the brightness of God shone round about them; and they feared with a great fear. And the angel said to them: Fear not; for, behold, I bring you good tidings of great joy, that shall be to all the people: For, this day, is born to you a Savior, who is Christ the Lord, in the city of David. And this shall be a sign unto you. You shall find the infant wrapped in swaddling clothes, and laid in a manger.

And suddenly there was with the angel a multitude of the heavenly army, praising God, and saying: Glory to God in the highest; and on earth peace to men of good will.
Luke 2:1-14

Joyeux Noël

Buon Natale

Feliz Navidad

Tuesday, December 21, 2004 6:21 AM CST

Noelle update December 21, 2004

Lights, action, camera….. We spent a rather strange day yesterday with the film crew from MBC. They followed Noelle around the house and got some action photos of her drawing and playing. We reached the saturation point when they followed Claire into the kitchen for some fascinating footage, capturing the intricacies of the making of a grill cheese sandwich.

Noelle was, of course, a star. She picked up her ques and was not the least bit shy. She did however, refuse to discuss her disease and treatment and was annoyed when they tried to film her taking her oral medicines. Noelle was surprised that leukemia was even brought up because she thought the filming was about her and not the stupid disease.

John Beltzer, the founder of Songs of Love arrived with the song he composed especially for Noelle. She was soo very excited and even on the second take of her big scene with John singing her song to her, gave the Korean audience a great show complete with singing and dancing.

John usually does not get to meet the children for whom he writes his songs so it was a treat for him. He also does not recall another four year old who likes Country Western music, little clams or black beans and rice.

While this was all a great distraction, we cannot forget what brought us together. In one refrain of Noelle’s song she is appropriately called a hero. Please remember this little hero and the thousands of others, including our little friend Michael, in your Christmas prayers.

Thursday, December 16, 2004 1:12 PM CST

Noelle update December 16, 2004

Noelle is going to be a television star!!! MBC has became interested in Songs of Love a non-profit company that composes songs for children and adolescents with serious illness. They decided to film the owner/composer as he worked on a song and then follow up with the child for whom the song was being created. He happened to be working on a song for Noelle so on Monday the film crew will be at our house filming Noelle. Very exciting and we are grateful that we can raise awareness about this awful disease. I would tell everyone to look for the story MBC is in Korea and the story will only run in that country and not here.

We have replaced the grind of frequent clinic visits with the grind of chasing Noelle around the house to force her to ingest a multitude of pills. She seems to be coming off the steroids but is still into mass consumption of food etc. Noelle is excited about Christmas and her birthday. As you may have expected Noelle was born during Christmas time on December 31, 1999.

Please remember Noelle and the other brave warriors, particularly our little clinic buddy Michael, in your prayers.

Wednesday, December 8, 2004 8:43 PM CST

Noelle update December 8, 2004

I guess in all our euphoria over Noelle making it to LTM, I forgot that she still had to take steroids in five day pulses. Moreover, I underestimated the impact the roids would have on her (after all it is only 60 percent of the dosage she took during DI and it is only five days a month). The first hint of my misjudgment came last night when I came home late and saw the tell tale signs of the “Big Eat N’ Scream”. The kitchen showed signs that macaroni and cheese, mini blueberry muffins and angel food cake had been consumed (in what order I have no idea). The second less subtle hint came at about 3:30 AM when I was awaken from multiple kidney punches deftly administered by my four year old Evander Hollyfield. After the punches had awakened me, I was ordered to leave my bedroom. When I failed to comply, screaming ensued and Noelle ran down the hall to awaken her mother, who hours before had wisely abandoned her bedroom to seek sanctuary in the guest room.

Tonight, Noelle ate some veal steak, mussels, tilapia etc. Right now I am waiting for the window of opportunity to administer the 6-MP, which has to be given at least an hour after eating!! That is very funny since an hour never passes between eating.

Noelle update December 6, 2004

Noelle had an action packed weekend followed by a great Monday.

We went to a nearby horse stable on Saturday with two of Noelle’s cousins. She got to ride a pony and took a hay ride through the woods to see Santa and Mrs. Claus.

Sunday was the Christmas party at the Valerie Center. It was nice seeing the doctors and nurses in a non chemo environment and Noelle had fun dancing and got lots of presents from Santa. (Last Christmas we could not even have imagined that we would be attending such a party.)

Today, Noelle went to the clinic to start her Long Term Maintenance phase of chemo. She will be scheduled to go to the clinic only once a month. Also today John McClean and Bobby Carpenter visited the clinic. They are two Jersey Devil ex-players and current coaches. They took some pictures with Noelle and gave her a Jersey Devil jersey.

The local paper ran a picture of Noelle Noelle with Jersey Devils

While we are excited about starting this next phase, we ask that you continue to pray for Noelle and please remember Michael in your prayers. He is one of our little clinic buddies who will be getting a Bone Marrow Transplant next week.

Monday, December 6, 2004 1:51 PM CST

Noelle started Long Term Maintenance today. This is the last, least intense and longest phase of treatment. She is a remarkable little girl and we are very proud of her.

Wednesday, December 1, 2004 4:34 PM CST

Noelle update December 1, 2004

Another trip to the clinic with the same result. Noelle's ANC is 686, which is below the 750 needed to start long term maintenance. Delays in the start of LTM are common. We will try again on Monday.

Noelle Update November 29, 2004

We went to the clinic today only to learn that Noelle's counts are still a little low to start LTM. Her ANC was 626 and it needs to be 750 before chemo resumes. We will try again on Wednesday.

Please remember one of our little friends in your prayers. He is one of our little clinic friends and is scheduled for a BMT on December 14.

Thanksgiving 2004

We never thought we would find much to be thankful for in a year that brought the devastating news that our daughter has leukemia. Noelle’s battle has however, made us realize that we are richly blessed.

We are thankful for Noelle’s doctors who while having have been called to a difficult and sad field of medicine never seem to lose their optimism. We are thankful for Ann, Cathy, Eileen, Gina, Jenn, Maureen, Shannon and Tricia (who like us are either Italian or Irish) who treat Noelle with unbelievable kindness, have become part of our family and make us (almost) look forward to clinic visits.

We are thankful for the Kirby center where Noelle attends pre-school. The teachers and Nurse Linda were there at the beginning and have continued to offer help and support.

We are grateful for all those people, many of whom we have never met, who pray for Noelle. We also are thankful for our online network of parents who are there 24/7 to answers our questions, calm our fears and listen to our rants.

Most of all, we are thankful that God has blessed us with Noelle.

Happy Thanksgiving

Tuesday, November 23, 2004 1:24 PM CST

Noelle update November 23, 2004

Noelle's counts are on the rise! She is, however, still neutropenic and her HGB is still pretty low. She will not get a transfusion and should be able to start LTM on Monday November 29, 2004.

Noelle update November 19, 2004

Noelle had a CBC today and while her counts are still low, her onc believes that she has bottomed out. He decided to hold off on the transfusion since she may not need it. Her ANC is still in the 90s but since her monocytes are on the rise, her neutrophils should follow suit. We are going to try to have a fun weekend and will keep an eye on Noelle’s temperature since neutropenia fever = hospital stay.


Noelle update November 17, 2004

Claire and Noelle are at the Clinic this morning. Noelle’s counts are still pretty low and she is still neutopenic. If needed, Noelle will be transfused on Friday. Since she is at the end of Delayed Intensification, her counts should begin to recover. Also, she received her shot of vincristine thereby marking the official end of Delayed Intensification. In her long struggle Noelle has passed yet another milestone. We are very proud of her and ask that you continue to remember her in your prayers.

Noelle update November 15, 2004

Noelle went to the clinic today for a CBC. Even though her hemoglobin and platelets were pretty low (and she is neutropenic) she did not need a transfusion. Wednesday she has another appointment for her vincristine (aka Mean Christine) and she probably will need some blood products by then. Thank you for praying for Noelle and please continue praying for her and the other children who suffer with leukemia.

Noelle loves to receive mail so please feel free to drop her a card or note.

Noelle update November 14, 2004

Courage, sacrifice, determination, commitment, toughness, heart, talent, guts. That's what little girls are made of; the hell with sugar and spice.
--Unknown

It has been pretty quiet this weekend. It seems like all of us, including Noelle, have colds. She appears to be feeling a little better and has not had chemo since Wednesday. Tomorrow she has to go to the clinic for a CBC and a transfusion if needed. Otherwise this is a huge week for her because on Wednesday November 17, she will receive an IV dose of vincristine which will complete the Delayed Intensification phase of her treatment. I cannot believe we are almost to Long Term Maintenance, which may start on Wednesday November 24, 2004 if her counts are high enough. Life is odd, before March 2004, if you told me that I would be having a delightful Thanksgiving thankful that for the next 19 months my four year daughter “only” has to endure: (i) daily 6-MP; (ii) 3 times a week Bactrim; (iii) once a week methotrexate; (iv) monthly vincristine injections; and (v) monthly spinal taps to inject methotrexate, I would not have believed you. But here we are, jumping for joy at anything that could be even be remotely construed as positive.

Thursday, November 11, 2004 11:39 PM CST

Noelle update November 11, 2004

It is Veterans Day so I am naturally thinking a lot about my dad. He fought in the ETO in WWII and saw action from the beaches of Normandy to the Ardennes. He was a highly decorated hero having been awarded a Silver Star and Two Bronze Stars for valor. He died on December 30, 1998 one year and one day before Noelle’s birth so he never got to meet her. I know he would have been proud of her. She manifests the fighting spirit and bravery she inherited from him on a daily basis.

Although she seems to be feeling better today she has a bit of a cold. She also is a complete crab and is acting like a drama queen. We are counting down to the end of DI on November 17, 2004 and the beginning of LTM on November 24, 2004, counts permitting. We pray that she continues to beat back this vile interloper.

Noelle update November 10, 2004

Noelle was not a happy camper today. In fact she was a decidedly unhappy camper. She screamed when she got her PEG shot and made quite a fuss when the nurses tried to access her port. Her platelets crashed, they were 103,000 on Saturday and today they dropped to 22,000. She therefore had to get a transfusion of platelets. She is also showing some effects of the vincristine in that she has some mild neuropathy in her left foot.

Thankfully we are within one week of reaching the end of delayed intensification because emotionally and physically Noelle has had enough.


Noelle update November 8, 2004

Noelle seems to be feeling better. Her temperature is near normal and so far the cultures that they pulled on Saturday have not grown a thing. We have to keep an eye on her because the Ara-C may cause a drop in her platelets. Tomorrow she finishes her 6 TG and Wednesday is (please God) her last PEG shot. You may remember that the PEG, which is derived from e coli bacteria, is nasty and can cause a severe allergic reaction as well as other very serious side effects.

She seems to be getting better at dealing with the bactrim. The bactrim is a prophylactic oral antibiotic that prevents PCP pneumonia, a disease that CK are very susceptible to catching. I was speaking to a friend tonight and he told me that his wife was just diagnosed with pneumonia. When I told Noelle, she asked “did she not take her bactrim”?

Noelle update November 7, 2004

The home nurse came this morning and gave Noelle her Ara-C and IV antibiotics. While her temperature has been normal or close to normal all day, she does not feel that great. Hopefully she will bounce back tomorrow. Her next chemo (PEG and Vincristine) is not until Wednesday but we will take her over to the clinic tomorrow so the doctors can check her out and give us the results of the cultures.

Noelle update November 6, 2004

As we work towards the end of Delayed Intensification we are reminded that this still is a harrowing ride. Yesterday, in addition to her chemo, Noelle needed a transfusion. Transfusions are not unexpected particularly since she is on Ara-C, but it required her to spend most of the day at the clinic. Then this morning at about 3:30 she spiked a fever so we were off to the ER. Luckily her counts were good so after some antibiotics and a four hour stay she was discharged. As usual Noelle was her happy and uncomplaining self while at the ER. One of her nurses was named Noelle and our Noelle delighted in calling out her name.

There was no escape even at home as evidenced by the home nurse administering chemo to Noelle. The nurse will also come tomorrow to give Noelle her very last (please God) dosage of Ara-C and some IV antibiotics.

Sunday, October 31, 2004 7:59 PM CDT

Noelle update October 31, 2004

Noelle’s protocol required that she get Ara-C yesterday and today. We therefore had to have a home nurse come and administer the chemo. The nurse was very nice but it brought back horrible memories of my mother’s fight with breast cancer during which she endured frequent dosages of chemo administered at home. Noelle wasted so much energy this morning fretting and awaiting the arrival of the nurse. It made for a very stressful weekend.

All was not lost because we took her to a costume party at the Morris Museum. Dressed as “Spider Girl” she won a prize for having the best costume. Of course it may have been a sympathy vote since she looked pretty pathetic when her orange wig fell and revealed a bald head. Afterward we went trick or treating around the neighborhood and Noelle had a blast. She even walked a good distance without complaining.

Aside from her oral medicines, this week is quiet until Wednesday when she goes for another spinal followed by four doses of Ara-C on Thursday, Friday, Saturday and Sunday.

Noelle update October 28, 2004

We survived the hills of San Francisco. Claire did great and I am very proud of her. How she trained during the dark and stressful roid days is beyond me. The race raised over $10 million for the Leukemia & Lymphoma Society. I just hope some of those funds make it to childhood leukemia causes. Claire was also on the cover of the local paper. Here is the link to the article http://www.dailyrecord.com/news/articles/news5-marathonmom.htm

One of the highlights of the trip was meeting with Ali’s (www.caringbridge.org/ca/ali) parents. As luck would have it, Marey and Russ were in SF attending their son’s soccer game. Unfortunately Miss Ali was not feeling up to the trip so I did not get to meet her. Also, Claire missed out since she had just finished her race and needed to head back to the hotel to regroup. Even though aside from the ALL-Kids list, we had never met, we are like old friends. It is hard to explain the special relationship between ALL parents.

Another treat was spending time with Eileen. She is one of the nurses from the Valerie center whose daughter ran the whole marathon. Eileen and Noelle's other nurses are like family to us and we are blessed to have such dedicated and caring people looking after our Noelle.

We got back from SF on Tuesday and then it was back to reality. Noelle had a full day at the clinic on Wednesday. She had a spinal and received Cytoxan, which meant seven hours at the clinic. Today she starts her four days of Ara-C. The silver lining is that the latest treatment calendar supplied to us by the clinic, indicates that maintenance will start on November 24 if counts are okay. I almost cried when I saw those words.

Thursday, October 21, 2004 9:16 PM CDT

California here we come!! After weeks of tough training (by Claire), carbo loading (by me) and steroidal, maniacal, dictatorial screaming (by Noelle) we are ready for the big TNT race in San Francisco. Claire raised over $7000 for the Leukemia Society and is one of the top fundraisers in the nation. This will be the first time we left Noelle since dx and are a little nervous.

Looks like Noelle caught a cold but is feeling better and avoided an in-patient stay. Her fever is gone and she is also moving around more. She gets a little break since she does not get any chemo until Wednesday October 27, 2004.

Please continue to pray for Noelle and for all the other brave little children.

Sunday, October 17, 2004 4:28 PM CDT

Noelle update October 17, 2004

As they say “you can run but you cannot hide.” Since we made it through the first six months without “major” incident, we thought we would continue along without too much trouble. WRONG!! Noelle is beginning to suffer from some side affects of the chemo. Notably, she has been experiencing leg pain and some difficulty walking. Thankfully, the pain is not severe enough to require drastic pain killers such as morphine. Also the pain and walking difficulties have been diminishing on a daily basis. The steroids are also wearing off, her bloating is receding and her pleasant personality has returned.

She definitely looks the part of a CK. Judging by the odd stares and pathetic looks she gets, it is also obvious to the casual observer. For example, Claire and Noelle were at the supermarket the other day and an old man came up to them and asked if Noelle had cancer. People say the darnedest things.

Tomorrow Noelle has a clinic visit for blood counts and transfusion(s) if needed. She is about 10 days away from starting the last part of DI, so she gets a little break from intense Chemo. If everything goes as planned she should be done with DI before Thanksgiving.

Please continue to pray for her as well as the thousands of other children who are afflicted with childhood cancer.

Noelle update October 18, 2004

Noelle did pretty well at the clinic today in that her counts were not low enough to require a transfusion. Her ANC was, however, 360 which means she is neutropenic and cannot yet start the re-consolidation portion of delayed intensification. She will probably begin that phase next Wednesday October 27, 2004. The timing of treatment will allow Claire and (hopefully) me to travel to San Francisco for the Nike 26.2 Team in Training event. Claire has been training very hard and has raised almost $7,000.

Noelle's spirit is definitely improving although she still has a pretty good appetite. I told her that she should not be so hungry because she has stopped taking the medicine (steroids). She said that it is hard for her brain to stop thinking about food.

Noelle update October 19, 2004

After a mostly sleepless night, Noelle awoke with a fever of 100.6. It was off to the clinic where she peaked at about 102.6. She received some IV fluids and an antibiotic. Remarkably, at least to me, her ANC is 974 about a 600 point increase over yesterday. Since she is above the 500 point threshold, we got to take her home and she avoided a hospital stay. We have to monitor her tonight and take her back tomorrow for follow up.

Sunday, October 10, 2004 6:28 PM CDT

Noelle update October 10, 2004

“Life is a journey not a destination.” Yes, but even on journeys one reaches milestones along the way. Today, during our ALL journey we have reached day 21 of DI. This means today is the end of steroids, at least until the 5 day once a month pulses during LTM. The decadron has been particularly difficult on Noelle. She is a walking demonstration of the side effects associated with this drug: the moon face; the protruding belly; the nervousness; sleepiness; the ravenous appetite; the strange food cravings; and the moodiness to name a few. On Friday night at about 11, she burst into the guest room screaming and demanding that I cook her some veal. Last night at 10 she insisted that we bake a cake. Needless to say we have all been doing a lot of eating but not much sleeping.

Tomorrow she goes to the clinic for a check of her counts and a transfusion if needed. She is not scheduled for chemo for at least another week so hopefully we can relax for a few days and hope for the reemergence of our sweet little daughter.

Noelle update October 11, 2004

Although she needed fluids, Noelle did not need a transfusion today. She is still a decadroness. For those not familiar with the creatures of ancient mythology, a decadroness is a vicious ravenous creature that consumes all in its path. It induces a zombie like state in its victims through high pitched screaming and incessant demands for raviolis, macaroni and cheese and baked goods.

The good news of the day is that the Doctor believes he can juggle Noelle’s chemo schedule in order to allow Claire and I to go to San Francisco for the Nike 26.2.

Noelle update October 13, 2004

Noelle is bloated with a moon face and bulging belly. Yesterday she caught a look at herself in the mirror. She cried and cried saying she does not like the way she looks. Also, she is having some leg pain and trouble walking. The clinic said that the leg pain is caused by vincristine, one of her chemo drugs. Even so, the roids are starting to wear off and her mood is beginning to improve. Hopefully she will let her old man back into his bedroom.

Sunday, October 3, 2004 12:44 AM CDT

Noelle update October 3, 2004

We are in day 14 of 21 of the steroid phase in DI. My friend Terry, one of the funniest of the CK parents (you will see what I mean if you visit his sweet daughter’s website at http://www2.caringbridge.org/canada/julianna/) calls the steroid phase “The Big Eat N’ Scream”. Last night Noelle came into my room jumped into my bed and then screamed at the top of her lungs insisting that I leave the room at once. I therefore got to spend yet another night in the guest room.

Then there were the three feedings: bread and butter and a soft pretzel at 1:30 AM; cereal and another pretzel at 3:45 AM; and a banana and some more bread at 6:00 AM. This did not keep her from demanding an egg, bacon and pancakes at 8:30 AM.

She struggles to be good and even when yelling still uses her manners. We took her out for a hay ride today, but once we got there, she changed her mind. She has been unable to focus on anything for too long.

The doxorubin has really done a job on her hair, which has fallen out in larges clumps. Her balding head along with the round face and protruding belly makes her look like as horrible as I am sure she feels. Force feeding her steroids, which we know are making her feel and look like hell is not easy. We know however, that the steroids are essential for her treatment and that next Sunday marks the end of steroids (at least for a while).

In today's vernacular, one often hears that “CANCER SUCKS”. While this description is true enough for cancer in general, it does not accurately describe childhood cancer which truly sucks beyond all descriptions.

Sunday, September 26, 2004 12:42 AM CDT

It was “just” six months ago today that our lives took a previously unthinkable turn. Claire and I were in Noelle’s hospital room awaiting the news we knew was coming. When the door opened and the doctor along with a nurse and a social worker appeared, it was obvious that the news was bad. Good news is usually not delivered by a group. Even though we had two days to prepare and had been told what to expect, it was still quite horrible to actually hear the words that yes its been confirmed that your daughter has leukemia. That day was, and I pray to God will always be, the nadir of our struggle with leukemia. Six months later we have turned the page on three of the five treatment phases. We have also learned a lot about leukemia. But we have learned even more about our daughter. Noelle’s story is not about leukemia. Leukemia is merely an obstacle that this amazing four year old has met head on.

Tuesday, September 21, 2004 10:41 AM CDT

Yesterday we embarked on DI (Delayed Intensification). Among the assorted goodies (poisons) to which Noelle is subjected, is the ever delightful 21 day regime of a steroid called dexamethasone. Among other effects, this drug gives her a voracious appetite and turns her into a raving lunatic. The local fire department has agreed to lend me a warning sign for placement on Noelle (no not the "This Vehicle stops at all RR crossings" but the one that says "Stay back 100 feet"). That should help even though 100 feet may still be too close. Although she was pretty good last night, just up at 11:00 PM woofing down some Italian bread with butter. At least she did it with a smile!

On Thursday Noelle goes back to the clinic for her PEG shot in her thigh muscle. This will be the penultimate time she gets this odious drug!!

We pray that Noelle continues to tolerate her treatments and that her treatments achieve their intended result. We are also mindful of an explosion of misery -- the clinic seems to be overflowing with so many little children afflicted with this "rare" disease. Also, within the last week several children earned their wings. We mourn their passing and will always remember them as our fallen comrades-in-arms.

Saturday, September 11, 2004 8:46 AM CDT

Noelle update September 11, 2004

Today is an awful anniversary. I will never forget getting off the train in NYC only to see the Twin Towers engulfed in flames. I will also never forget seeing the face of Satan laughing among the smoke and fire. While I am sure everyone has been impacted by this terrible event, it has special significance for those of us from the NYC area. Even though none of my family or close friends were murdered on that day, I did lose several neighbors and former class mates. I can never forget being “evacuated” from the city in a Circle Line boat. The boat’s course took us very close to the smoldering pile that was once over 2000 vibrant people as well as the two tallest buildings in the world. The terrible stench is still engrained in my nostrils. I still have the pit in my stomach from seeing F-15s circle overhead. (Of course since March 23, 2004 that pit is no longer alone.) Also, the firm at which I now work had its offices in the WTC. While it lost no employees, it is still traumatized. The firm now has its NYC offices right behind the WTC site. So every time I visit that office, and see the hole in the ground, I am reminded of that terrible event. I will neither forget those murdered nor forgive their murderers. I often forget that we who struggle with childhood leukemia have no monopoly on misery. Many others including those who lost loves ones on September 11 or in the recent Chechnyan slaughter of innocence, are also suffering. I try to remember that as I look at my balding gaunt child.

Noelle went to Clinic on Wednesday. With an ANC of 210, she is once again neutropenic. Her other counts are low but not low enough to require a transfusion. We had a pretty active Labor Day weekend – went to a festival and went apple picking. Noelle had fun but is lacking her old spark and energy. She also gave herself a haircut by butchering what is left of her bangs. Oh well we suspect that the next intensive round of chemo, which starts on September 20, will take the rest of her hair anyway. Noelle will also return to pre-school on Monday September 13. We are as usual both excited and worried.

Brave little Thomas earned his wings today at 9:11 PM, six days shy of his twelfth birthday. Thomas and his family endured unbelievable hardship during his struggle. His site is http://www3.caringbridge.org/nj/thomaspeterpaul/

Saturday, September 4, 2004 9:07 AM CDT

Noelle update September 4, 2004

On Thursday September 2, 2004 Noelle received her last chemotherapy administered in the Interim Maintenance phase (IM)– the third of five phases in her protocol. In IM Noelle was, in addition to another drug, administered five escalating dosages of methotrexate. The protocol specifies that the dosages be increased until “toxicity”. As I understand it, not all patients can tolerate the entire five escalated dosages. I was shocked on Thursday to hear that Noelle’s counts had recovered enough to allow her to get the final full dose of this powerful drug. Typical for the world of ALL I was conflicted – worried about the side effects while hoping that the higher dosage helps her fight the disease.

Next up on September 20, 2004 Noelle will start Delayed Intensification (DI). DI essentially repeats the first two phases of treatment, which were not too much fun the first time around. Fortunately she will get a little break between treatment phases and will hopefully enjoy her first week of pre-school.

During IM Noelle started to look the part of a CK. Her hair– including her eyebrow hair is really falling out. She got a wig that looks just awful. I fight the tears every time she puts it on.

Please pray for Noelle and her doctors and nurses. Also, there is a little boy in the next town who is having an awful time. Like Noelle he has ALL. He underwent a marrow transplant but things have gone terribly wrong. Please pray for him and family. His web site is www.caringbridge.org/nj/thomaspeterpaul

Wednesday, September 1, 2004 10:53 AM CDT

Noelle update September 1, 2004

It is already September. Wow! Time even flies when it does not seem possible to be having any less fun. September is also Childhood Cancer Awareness month. Thanks just the same I am already keenly aware.

Even though Interim Maintenance sounds like it should be easy, the last week or so has been tough on Noelle - a night in the hospital and a blood transfusion. It has also been hard on us. We can no longer delude ourselves about her illness. For the first time since diagnosis in March, she looks the part of a sick little girl. Particularly since her hair (including her eyebrows) is falling out, she looks pale and is thin.

We are, however, marching forward and tomorrow marks the last treatment day of Interim Maintenance! Three treatment phases down and two to go!!! Also, pre-school resumes on September 13 and Noelle and her mother cannot wait.

Thank-you for checking in on Noelle and please visit Claire’s Team in Training website at http://www.active.com/donations/fundraise_public.cfm?key=tntnonjCTalari

Sunday, August 29, 2004 7:12 AM CDT

Please visit Claire TNT site at http://www.active.com/donations/fundraise_public.cfm?key=tntnonjCTalari

On Thursday afternoon, Noelle's temperature again hit the 101 threshold. This time she (and Claire) got a one night stay at Goryeb and I got a lonely sleepless night at home missing them both. Noelle got some antibiotics and was released on Friday. The fact that we now know all of the nurses and that we get to skip the ER and go right to a room, makes hospital visits less scary for her. Her counts are crashing so she may need some hemoglobin and/or platelets on Monday. She looks somewhat drawn and pale, the last doses of chemo have been hard on her, so it would not surprise me if she gets transfused. These are all normal steps in the chemo dance.

Noelle had a great Friday night and Saturday. Her aunt stayed with us on Friday night and cooked us all a gourmet meal. On Saturday, one of her other aunts came over with Noelle's cousins and they played and played. Today yet another aunt is coming over with her new golden Labrador. Noelle is so excited about taking him to the park!!

Noelle is really doing her best to lead the normal life of a 4 year old.

Please continue to remember her in your prayers.

Tuesday, August 24, 2004 8:51 PM CDT

Noelle update August 24, 2004

Sometimes I think it is just not fair. After taking last week off and going down the shore, it was back to work for me and CK reality for Noelle. I wish I could have changed places. While I plowed through the documents and lawsuits that awaited me, Noelle got a triple dose of chemo: (1) intrathecal methotrexate injected in her spine while under general anesthesia; (2) an escalated IV dose of methotrexate; and (3) IV vincristine. Noelle was her charming self and entertained the anesthesiologist with a variety of stories (i.e. about the sand castles we built at the beach, about the girls at school who talk too much, etc.) when awakening from her drug induced slumber.

Claire noted that there were three new patients, including a little baby, at the clinic. Having lived through that in March, our hearts ache for the parents of the newly diagnosed. Also, even though leukemia is relatively rare there always is a steady stream of new patients at the center.

Last night Noelle’s temperature reached the 101 threshold, which usually requires a day or two in the hospital. I called Noelle’s doctor, who having just examined Noelle earlier in the day, opined that the fever may be the effects of the chemo and not an infection. Moreover, he noted that her blood counts were good. We were instructed to give her Tylenol, and wait one hour to see if her temperature dropped below 100, which fortunately it did.

Today, Noelle had a pretty good day. Thanks to the chemo, however, her hair is really thinning and we suspect she will be bald soon. Then she will look the part.

Please keep Noelle and the other CKs in your prayers.

Also, Claire has been training hard for her ½ marathon in October. She is running this race to raise money to cure leukemia. Please visit her site and donate if you can. Her site is http://www.active.com/donations/fundraise_public.cfm?key=tntnonjCTalari

George

Friday, August 13, 2004 8:59 AM CDT

Noelle update August 13, 2004

Interim Maintenance with its chemotherapy “only” ever 9 or 10 days has hit at the right time for Noelle. She is having a pretty good summer. This week as the pictures detail, we went to the New Jersey State Fair. Next week we are going to the beach for the week. Noelle was, however, pretty wiped out by her third of five escalating doses of methotrexate that she received yesterday (along with some vincristine for good measure). She feel asleep on the couch at about 5 PM awoke to catch a movie than slept through the night. Today she goes for a PEG shot which, given its propensity to cause allergic reactions, can also be fun.

Noelle now has another guardian angel. Sadly, we lost a brave friend this week. Jim was diagnosed with Hodgkin’s lymphoma almost a decade ago. He courageously battled on while living a full life - married a charming girl, he published several books, wrote and recorded music and traveled extensively. One of our last memories of him was him strumming a guitar in front of a bon fire by a Canadian lake serenading Noelle.

Please remember Jim and his family in your prayers.

Saturday, August 7, 2004 5:57 AM CDT

A friend sent this to me and it really hits the mark.

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles..

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.

Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.

I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day.............

Monday, August 2, 2004 7:53 PM CDT

Monday, August 2, 2004 7:23 PM CDT

Noelle went to the clinic for her second of five Interim Maintenance (IM) treatments. Under her protocol, she gets IV vincristine and escalating IV doses of methotrexate every ten days. The methotrexate is given in ever increasing doses "until toxicity" e.g. myelosuppression. At least we have something else to look forward to. Even though all of us, particularly Noelle, genuinely like all of the nurses and doctors, the ten days between clinic visits is a nice break.

Noelle does not act the part of a sick child. She never complains. We are also trying to let Noelle live a relatively normal life of a 4 year old. She is: visiting the shore; attending camp; going to the state fair; swimming in her pool; and running and playing.

Even though things seem pretty quiet, we realise we are dealing with a dangerous and coy monster. Please pray that we can slay this dreadful beast

Thursday, July 29, 2004 1:46 PM CDT

Noelle Update July 29, 2004

After making three trips to the clinic last week - two for chemo and one to check out a stiff neck - this week has been pretty quiet for Noelle. Of course no week is ever event free as we continue to struggle with the oral medicines and are ever vigilant about her health.

On Sunday we took her to a historic working farm. She had a blast crushing corn, feeding chickens and rolling biscuits. The “farmer’s wife” was very impressed with Noelle. She was amazed that a four-year old possessed such enthusiasm and a well developed inquisitive mind. I neither had the stomach nor thought it appropriate to drop the “L” bomb on the wife. Moreover, it occurred to me that Noelle is not and should not be defined by her disease. She is a bright and precocious child who happens to have ALL. Noelle’s battle with the disease merely showcases her unbelievable qualities of bravery, humor, perseverance to name a few. Even though she tortures us when it comes time to take oral meds, we could not be prouder parents and are ever thankful that God has blessed us with her.

Monday, August 2, 2004 7:23 PM CDT

Noelle went to the clinic for her second of five Interim Maintenance (IM) treatments. Under her protocol, she gets IV vincristine and escalating IV doses of methotrexate every ten days. The methotrexate is given in ever increasing doses "until toxicity" e.g. myelosuppression. At least we have something else to look forward to. Even though all of us, particularly Noelle, genuinely like all of the nurses and doctors, the ten days between clinic visits is a nice break.

Noelle does not act the part of a sick child. She never complains. We are also trying to let Noelle live a relatively normal life of a 4 year old. She is: visiting the shore; attending camp; going to the state fair; swimming in her pool; and running and playing.

Even though things seem pretty quiet, we realise we are dealing with a dangerous and coy monster. Please pray that we can slay this dreadful beast.

Friday, March 26, 2004 7:22 PM CDT

How did we find out that Noelle has leukemia??

The brief chronology that follows will answer this question:

February 2004: Claire notices bruising on Noelle's legs. Noelle is also complaining about leg pains and has some unexplained nosebleeds. I dismiss, what I now know are tell tale signs of leukemia, as simple childhood symptoms of playground activities. I, half sarcastically, comment to Claire that the leg bruising looks a little like we are beating Noelle and that New Jersey's Stalinist family services department will take her from us and charge us with child abuse.

March 6, 2004: I take Noelle to the pediatrician since she is complaining about a sore throat. While I am there, I mention that she has frequent nosebleeds. The doctor makes the diagnosis of strep throat, prescribes amoxicillin. He also opines that the nosebleeds are normal childhood things.

March 13, 2004: Noelle's lips seem unusually inflamed. She is also acting abnormally hyperactive. Fearful that she is reacting to the amoxicillin, I return to the pediatrician who diagnoses her with a simple case of severely chap lips.

March 18, 2004: I am attending an out of town seminar. Claire goes to suburban Philadelphia to visit her family. Noelle breaks out in hives and Claire takes her the emergency room of Bryn Mawr Hospital. The ER is loaded with the refuse of post St. Patrick’s Day reverie. The distracted ER doctors opine that she is having an allergic reaction to the amoxicillin. Without performing a blood test, they prescribe a heavy dose of prednisone, a steroid.

March 18 – 22, 2004: Noelle is not herself; she is lethargic and seems a little pale. We blame it on the steroids. I dutifully administer Noelle complete 5-day steroid prescription.

March 23, 2004: We delude ourselves into believing that she is getting better. She returns to pre-school. Her very alert teacher and school nurse examine Noelle and call us. The nurse tells us we should take Noelle to her doctor since Noelle’s liver seems swollen and that perhaps she has mononucleosis. Claire takes Noelle to the pediatrician who promptly orders a battery of blood tests. I am starting to catch on that something is wrong. The urgency of the doctor worries me. I leave work and go with Claire to the hospital for Noelle’s blood tests. While we are there the doctor calls and orders some more tests. We go home at about 4 PM and await his call. At 6:30 he calls and says that we must take Noelle to the hospital ASAP and that the head of pediatric hematology is expecting us and will meet us there. He states that she is severely anemic and will need blood. We head over to the Goryeb Children’s Hospital (which is part of Morristown Memorial Hospital); all of 2 ½ miles from home. The chief of staff of pediatric hematology (and later I learn oncology) at Morristown Memorial Hospital meets us in Noelle’s room. I am instantly impressed with his demeanor and obvious intelligence. He calmly shows us her blood test results, pointing out all of the critically low results. He inquires about whether she has had leg pain, bruising or nosebleeds. My mind is racing and I realize that this is a lot more serious than mononucleosis. He describes some of the tests that he will perform over the next day. When he mentions bone marrow aspiration my head explodes. Praying for the right answer, I blurt out the question “You don’t think she has leukemia do you doctor?” Claire’s look of shock turns to horror when he responds affirmatively.

After that, time seems to stand still while my mind is racing. I cannot believe it. Having buried both, my parents after long painful illnesses, I never imagined that my child would get cancer. Maybe the doctor is wrong. But I know that he is not wrong. He is a consummate professional and would not subject us to this pain unless he was certain. He is also very upbeat. He explains to us that there have been tremendous advances in treating childhood leukemia. Later I learn that he has personally played a role in advancing the treatment of childhood leukemia. He also is very gentle with Noelle and is compassionate without any fake sentimentality. Claire and I regroup and prepare for the next day. Poor Claire gets elected to spend the night in Noelle’s hospital room. I disingenuously offer to stay but point out that the makeshift bed is really inadequate for my large frame. Noelle gets a blood transfusion as well as platelets.

March 24, 2004: Noelle goes under general anesthesia for the first time in her young life. As a result of the bone marrow aspiration, we learn that the prednisone has probably been, quite unintentionally, very effective at killing some of Noelle’s leukemia cells. This makes diagnosis difficult and means that Noelle must go through another bone marrow aspiration tomorrow. There seems to be at least a modest chance that Noelle does not have leukemia. We are even more apprehensive. Just as we come to grips with our daughter having leukemia, we are faced with the remote possibility that some other weird thing is causing her condition. Noelle runs a slight fever and is put on antibiotics. This will unfortunately lengthen her hospital stay by two days.

March 25, 2004: Another dose of general anesthesia and little Noelle’s bone marrow is once again sampled. The doctor remains confident that she has leukemia and notes that the steroids profound effect on the leukemia cells could be a good sign. We await the final word.

March 26, 2004: Final diagnosis is confirmed. Even having had a few days to prepare, we are still in shock when we here the diagnosis. Next we faced the bewildering prospect of treatment. We learn that there are protocols and clinical studies. Thankfully, her doctor very patiently reviews the data and options in a simple fashion that I can somewhat understand. I joke to myself that him teaching me about leukemia must be like me teaching Noelle to count, except that she is smarter than me. Noelle gets discharged from the hospital and we happily take her home and try to enjoy the weekend, knowing full well that on Monday treatments will begin. As if Sunday nights did not already depress me.

Thursday, July 29, 2004 1:46 PM CDT

Noelle Update July 29, 2004

After making three trips to the clinic last week - two for chemo and one to check out a stiff neck - this week has been pretty quiet for Noelle. Of course no week is ever event free as we continue to struggle with the oral medicines and are ever vigilant about her health.

On Sunday we took her to a historic working farm. She had a blast crushing corn, feeding chickens and rolling biscuits. The “farmer’s wife” was very impressed with Noelle. She was amazed that a four-year old possessed such enthusiasm and a well developed inquisitive mind. I neither had the stomach nor thought it appropriate to drop the “L” bomb on the wife. Moreover, it occurred to me that Noelle is not and should not be defined by her disease. She is a bright and precocious child who happens to have ALL. Noelle’s battle with the disease merely showcases her unbelievable qualities of bravery, humor, perseverance to name a few. Even though she tortures us when it comes time to take oral meds, we could not be prouder parents and are ever thankful that God has blessed us with her.

Wednesday, July 21, 2004 2:10 PM CDT

Noelle update July 21, 2004

Onto Interim Maintenance and beyond! As a reward for having sufficiently high blood counts Noelle was treated to general anesthesia, spinal injection of chemo and IV injection of two other chemo drugs. The anesthesiologist, having previously treated both Claire and Noelle, noted that I am the only family member that he has not knocked out. Whoever said there was no such thing as funny anesthesiologists is mistaken. Tomorrow Noelle will get her PEG shot in her leg muscle. Thereafter, she will get a nine day reprieve before her next treatment. Please keep the prayers coming.

Not so fast the day does not end there. At about 5:30 PM Noelle had a 102.6 fever. Back to the clinic where luckily the good nurses stayed late and took care of Noelle thereby sparing us a hospital stay.

Hope is a strange invention--
A Patent of the Heart--
In unremitting action
Yet never wearing out.

* Emily Dickinson

Saturday, July 17, 2004 4:37 PM CDT

Noelle update July 17, 2004

Noelle is home after two nights in the hospital. Her fever fortunately did not last long. We are not certain what caused it since her cultures have so far come back negative. A virus that seems to be hitting the clinic pretty hard may be the culprit. Claire finally called my bluff and agreed that it was turn to sleep on the couch in Noelle's room last night. It was one of the rare times that I wished God had not equipped me with a 6' 2" body. My weird and frequent nightmares about being backed over by a garbage truck were always interrupted by a nurse tending the IV alarm. Noelle held up pretty well and was not nearly as jumpy as she was during her last stay in March, when she was diagnosed. She also entertained the nurses by peppering her talk with words like “contraption” which somehow sounds funny coming from a 4 year old mouth. She also did a G rated version of George Carlin’s seven bad words by opining that such words as: “butt”; “stupid”; “bored”; and the mother of all bad words “pain in the ass” should not be used in polite conversation.

If Noelle's ANC recovers, it is now below 100, she will start IM on July 21. Since her HGB, platelets and monocyte levels are good, her ANC may recover by then.

Please pray that God continues to bless her as well as her nurses and doctors.

Thursday, July 15, 2004 10:41 PM CDT

So much for smooth sailing. Noelle finished Consolidation with nary a problem. Tonight, however, Noelle spiked a fever of 102 and was admitted to Goryeb Children's Hospital for antibiotics and blood work. Her doctor mentioned that a virus was going around but we will not know for certain until the blood tests are back. I am home alone as Claire rejected my half hearted offer to stay in the room with Noelle.

Please continue to keep Noelle in your prayers.

Thursday, July 8, 2004 6:37 PM CDT

Noelle update July 8, 2004

Hooray!! Yesterday’s chemotherapy treatment marked the end of the Consolidation phase. We next move onto Interim Maintenance commencing later in July.

Like everyone else in the Garden State, Noelle enjoyed the July 4th Holiday at the beach. She played with her cousins, built sand castles and even went for a couple of quick dips in the ocean. This week she has been attending her pre-school’s camp and seems to be having a ball. Aside from her frequent clinic visits, the occasional nausea and the haranguing over the oral meds, life is beginning to return to some level of normalcy for Noelle. While we are hopeful we are also ever mindful that we are in the midst of an epic battle that we could not bear to lose.

Thank-you for checking in on Noelle and please continue to ask God to check in on her too.

Wednesday, June 30, 2004 7:06 PM CDT

Noelle update June 30, 2004

In addition to killing leukemia and other cells, the chemotherapy also suppresses Noelle’s blood cells. On Monday, she was complaining about headaches after exertion and looked even paler than usual – signs of low hemoglobin. Also, she had bruises on her legs and arms – signs of low platelets. We took her to the clinic yesterday where she got a transfusion of platelets. Unfortunately, she had an allergic reaction, which required a full day’s worth of attention at the clinic. Today she got the hemoglobin transfusion, along with two different chemotherapy drugs and again spent most of her day at the clinic. We are moving forward through her regimen and next Wednesday will mark the end of treatments in the Consolidation phase, the second of our five rings of hell.

Happy Independence Day. And Happy Canada Day to our friends up North. We are going to the shore to celebrate. God Bless America and God Bless Noelle.

Saturday, June 26, 2004 7:59 PM CDT

Noelle update June 26, 2004

Since her last update on June 16, Noelle has had chemotherapy injections in her legs on June 17 – 19 and June 22-25. She endures these shots without much complaining, although she does seem a little tense for about an hour preceding the treatments. She has not, however, been a willing participant in taking her oral medications. She gets so worked up that she has actually made herself sick to her stomach: there is hope since yesterday and today she took her oral meds without incident. She also had a pretty active week. She attended “camp” at her pre-school and really enjoyed the activities and playing with her friends. Also, the staff is excellent and extremely vigilant. We know that she is in good hands. Today she went into NYC to visit the Museum of Natural History. She loved the space show at the Hayden Planetarium and right now she is in the back yard combing the galaxy with her brand new telescope. In all respects, she appears to be a normal four-year-old girl. We do not like counting days and wishing for the rapid passage of time. After all she is only four once. It is hard, however, not to cross every single chemo day off the calendar, all the while praying that tomorrow rapidly turns into yesterday.

Thursday, June 17, 2004 6:03 AM CDT

Noelle’s Update June 16, 2004

Noelle’s counts were sufficiently recovered to permit the continuation of chemotherapy. She began the second half of the Consolidation phase of her therapy and was administered three different drugs today – two through her port at the clinic and one orally at night. Even though she was at the clinic all day she never complained once. Of course, why should she? The clinic is like a playroom for Noelle equipped with toys, games, videos and more importantly an incredibly friendly staff that Noelle adores.

Noelle’s joie de vie remains fully intact. We are very excited about enjoying the summer with her. She will be attending a “camp” at her pre-school. She will also be spending some weekends at the shore. I also now remember the Serenity Prayer, “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”

I say this prayer every time I begin to obsess about the disease, treatments, blood counts, and mortality or am tempted to surf the web for yet another incomprehensible medical article.

Saturday, June 12, 2004 4:15 PM CDT

Noelle update June 12, 2004

It has been a pretty uneventful week and Noelle feels good. I am sure she has not missed the chemotherapy. Noelle’s neutropenia as well as the semi-quarantine that we have imposed do not seem to bother her. She has been playing outside and even splashes in her own little pool. We are thankful that is spring and not winter.

The funeral of President Reagan has not gone unnoticed by her. I think the funeral has focused her on the after life. She has been asking me about my mother, who died almost 10 years before Noelle was born. Noelle even made a bracelet for my mom and insisted that we bury it in the back yard so it would then make its way to her in heaven. Her mind amazes me and I pray that the treatments do not affect her wonderful little brain.

On Monday we go back to the clinic. If her ANC is 750 or more, the Consolidation phase will resume. If not, we will have to come back either on Wednesday or the following Monday. Since we are anxious to turn this page, we pray that her treatments can resume on Monday.

Monday, June 7, 2004 10:26 AM CDT

Noelle update June 7, 2004

We had planned to begin the second half of Consolidation this morning. Noelle was, however, sent home from the clinic without treatment. Actually, since she had begun some crafts and had people to play with, it was not easy to convince her to leave. Noelle’s counts are as follows:

WBC – 1.0
HGB – 11.1
Platelet – 285
ANC – 73

Consolidation cannot resume until her ANC hits 750. We will therefore retry next Monday. While we appreciate the week off without chemo, the extremely low ANC means Noelle will once again be cut off from most of the outside world, particularly children who can be far more infectious than adults.

Please continue to keep her in your prayers.

Wednesday, June 2, 2004 9:42 PM CDT

Noelle update June 2, 2004

As predicted, Noelle had a less than sizzling holiday weekend. Claire, Noelle and I spent the three days staring at each other. More like Claire and I staring at Noelle monitoring her every move for signs of bruising or illness. I even bought yet another thermometer. So now I can take her temperature utilizing all seventeen instruments perform a least square analysis, all the time having the phone at the ready to speed dial the clinic if need be. Actually, I am not that protective but the neutropenia frightens me, as does the fact that common childhood illnesses (i.e. chicken pox) could make her seriously ill.

We went to the clinic yesterday (Tuesday June 1) for blood work and an intravenous dose of vincristine, one of Noelle’s chemotherapy drugs. Noelle’s hemoglobin was normal (of course she got a transfusion on Friday) as were her platelets. Her ANC, however, dropped an additional 100 points. She will therefore once again spend a week deprived of any youthful companionship and aside from her mom and a dad, who is aging by the second; she is unlikely to have any companionship at all.

Visiting the clinic can be surreal. Yesterday, there seemed to be some new applicants for hell. They are so easy to spot. Zombie like parents with the same scared and shocked looks on their faces that we sported back in March in the company of cute bright-faced little girls whose sweet innocence does not allow them to even begin to contemplate the ordeal that awaits them. It was deja vu all over again.

While Noelle takes the IV and subcutaneous drugs like a pro, she is less than cooperative when it comes to her oral medicines. Last night we had the battle of the bactrim (a prophylactic antibiotic that Noelle will need to take two times a day, three days a week for the next two years), an epic four-hour struggle featuring a husband and wife tag team matching wits with a four year old. It was to say the least very stressful.

On Monday, if Noelle has an ANC of 750 or more (doubtful) she will move onto the next half of consolidation featuring eight subcutaneous doses of ara-c, two doses of vincristine, PEG Asparaginase, etc. etc. On Monday she will also get an Intrathecal dose of chemo in the spine and cytoxan. Cytoxan is a particluarly odious drug and will require a full afternoon of IV hydration at the clinic.

Please keep her in your prayers.

Monday, May 31, 2004 6:43 PM CDT

Noelle update May 29, 2004

In the odd parlance of acute leukemia, Noelle had a pretty easy week. The latest regime of oral chemotherapy ended on Sunday, one chemo drug was administered intravenously and one chemo drug was administered intramuscularly on Monday and she received a blood transfusion on Friday. As predicated, the drugs have suppressed her blood counts. Her low hemoglobin count required that she receive the transfusion on Friday. Her platelet count is also extremely low so she may need platelets by Tuesday. She is also, once again; neutropenic, which means her infection fighting ability, is diminished.

Noelle will therefore have a dull Memorial Day weekend since we are not going to expose her to many people and not allow her to engage in activities that may cause bruising or bleeding. This struggle is not, however, about insuring that Noelle enjoys Memorial Day 2004, 2005 or even 2006. We are more focused on the long term and look forward to having her take care of us during some Memorial Day far off in the future.

Since the treatments will last about 2 ½ years and our anxiety will last the rest of our lives, please continue to pray for her.

George

Saturday, May 22, 2004 6:39 PM CDT

Noelle update May 22, 2004

Noelle is just about ½ way through the Consolidation phase of her treatment. During this phase she has had to endure daily oral, intravenous and subcutaneous chemotherapy. Her hair is short and thin as she continues her march towards total baldness. Her spirit is unbroken and she shows little outward sign of her terrible ordeal.
On Tuesday, Claire and I meet with Dr. Kolb, a pediatric oncologist at Memorial Sloan Kettering Cancer Center (MSKCC) for a second opinion. Dr. Kolb practices with Dr. Peter Steinherz one of the leading lights on childhood leukemia. Dr. Kolb opined as follows:
1. Diagnosis He completely concurred that Noelle has pre-B ALL. He also commended Dr. Mahmoud for utilizing state of the art techniques (i.e. polymerase chain reaction. (PCR) an analytical method for amplifying DNA which allows precise identification of leukemia) in her very difficult diagnoses;
2. Prognosis He has confirmed that Noelle has many positive factors such as age, sex, TEL-AML1 positive leukemia, no peripheral blasts or CNS involvement at diagnosis, which should confer a good prognosis (of course to me percentages are meaningless in light of her 1 in 30000 chance of being here in the first place)
3. Treatment The protocol, pursuant to which Noelle is being treated (CCG 1961 Arm C), is the proper protocol for her treatment. Dr. Kolb opined that this is probably a slightly more aggressive regime than Noelle may need. If we had an accurate (unaltered by the 5 days of prednisone that Noelle took for her rash) pre-diagnosis white blood count (WBC) he believes it would have shown her to be in the low or standard risk category thereby allowing a less intense protocol. In his opinion, however, the higher risk protocol is appropriate for four different reasons: (i) we do not have an accurate pre diagnosis; (ii) the steroid may have only killed the weaker leukemia cells thereby allowing more resistant cells to dominate (this is precisely the reason that the treatment protocols utilize multiple drugs, it is also unlikely given her rapid remission); (iii) CCG 1961 utilizes asparaginase a drug which may be very effective in killing TEL-AML1 positive leukemia; and (iv) he does not believe that CCG 1961 is significantly more toxic than the lower risk protocols.
4. Conclusion Dr. Kolb concluded that Noelle is in good hands with Dr. Mahmoud and that there would be no reason for her to be treated at MSKCC, at least at this juncture. Obviously, this could change and since she in the MSKCC system, it would be easy to do. Dr. Kolb has agreed to confer with Dr. Mahmoud and discuss some of his opinions and minor suggestions (i.e. consider given Noelle an extra dose of asparaginase).
We are extremely thankful that we do not have to subject Noelle to MSKCC. While it is arguably the best cancer center in the world, it is a depressing and foreboding place. It is, moreover, extremely busy. There were awfully sick little children in the waiting room with us who had waited several hours to be treated. It made our two-hour wait seem trivial.
Next week Noelle only goes to the clinic on Monday. She will then get a few weeks off although we are certain she will need some blood products given her dropping platelet and hemoglobin counts (a side effect of the drugs).
Please keep Noelle in your prayers.
George

Saturday, May 15, 2004 6:38 PM CDT

Noelle has made me revaluate many things among them are my view of what actually constitutes a tough week. Here is a brief summary of Noelle's week.

Monday, May 10, 2004 No breakfast or any liquids in anticipation of general anesthesia...go to clinic at around 9:00 AM have blood test to check counts. . sit in the playroom with the other brave souls and the shells of people that were once their parents awaiting the return of the nurses bearing blood test results (it is like a scene from some bizarre deli line)...learn that Noelle's counts are good her ANC is over 1300 (her infection fighting ability is normal)...elation . . we can now start the next round of controlled poisoning called consolidation...ecstasy is soon dashed however when we are assured that consolidation will knock her counts back down again...prepare for general anesthesia and her fifth spinal tap (to inject methotrexate a chemo, directly into the spinal fluid to prevent the leukemia from seeking sanctuary therein)...awake from general anesthesia and promptly hooked up to an IV for hydration...given Zofran a very effective anti nausea drug . . given Cytoxan a powerful chemotherapy agent that can cause severe bladder damage thereby requiring Noelle to spend the day at the clinic hooked up to an IV for fluids...meet a new girl named Tara who has just joined hell . . . play games with her to kill the time . . get to go home at 4:00 PM...promptly heads for the garage and the new bike to ride…goes for a walk around the block with mother and aunt and her dad tries to recover..at night begin oral regime of mercaptopurine another chemotherapy agent. and take Bactrim an antibiotic to prevent certain infections (how many drugs per day can a little girl take???)

Tuesday - Wednesday, May 11 & 12, 2004 Easy days just go to clinic each day for Zofran and cytarabine - yet another chemotherapy drug - take bactrim and mercaptopurine at night

Thursday May 13, 2004 Surgery to remove the PICC line in her arm and install a subcutaneous port in her chest (to allow easy access for the years of chemo and blood tests that await her). . . scheduled for 11 am no eating or fluids…we take her to the same surgical suites that Claire frequented during her surgeries some of the same nurses and anesthesiologists that took care of Claire are now tending to Noelle…as if it could not get anymore surreal… Noelle actually hits the OR closer to 12:15. . .the surgeon comes out to talk to us at about 1:30 to advise that the surgery went well and that Noelle regaled the OR with tales of her experiences he said she is 4 going on 20….the surgical nurse greeted us and told us how sweet and precocious Noelle is and that taking care of a sweet little girl like Noelle was the reason she was a nurse…the Valerie Center nurses come down to recovery to check on Noelle and give her the cytarabine…Noelle is delighted that her PICC is gone and that her new port will allow her to go under the sprinkler…Noelle is also relieved that her mother no longer needs to flush the PICC lien daily..takes her dose of mercaptopurine at night


Friday May 14, 2004 Back to the clinic for cytarabine. . .cannot yet use the new port..decide to give her the cytarabine subcutaneously in the leg…we prepare the are with emla cream to deaden the pain..Gina perhaps Noelle’s favorite chemo nurse, tries to discreetly administer the drug while the others try to distract her..to no avail Noelle is very upset after all she had been assured by me that she would not have to get needles ever again ..Noelle was so upset that Gina almost starts to cry ..Noelle recovers quickly as Gina walks her around the clinic to give her a care bear doll…the social worker and pediatric resident then have Noelle sit between them as they read her a story…as I leave the clinic I overhear them comment to each other about how precious Noelle is ..I think to myself no kidding. . . takes her dose of mercaptopurine at night


Next week Noelle “only” has to endure four days Tuesday – Friday of cytarabine as well as the mercaptopurine at night. . . she will then get a little break and depending upon her blood counts the consolidation cycle will be repeated

God has blessed us by endowing Noelle with a quick mind and a gentle spirit. Through her ebullience God is guiding others and us through this difficult and stressful experience. Please continue to ask God to bless her.

George

Saturday, May 8, 2004 6:37 PM CDT

Noelle's next treatment phase (consolidation) has been postponed and is now scheduled to commence on Monday May 10. Her surgery for installation of a port has also been delayed. Her absolute neutrophil count (ANC) has been hovering around 500 and it needs to be at least 750 before the treatment begins. Neutrophils, the principal microbe-eating cell, are the main cells that fight infection. Noelle's low ANC means she is unable to adequately combat infection and her next treatments, which will suppress her counts even further, cannot begin until she recovers.

This is not uncommon and Noelle's counts will recover. Her platelets and hemoglobin are at or near normal levels. Also, her monocyte (a white blood cell that assists in fighting infection) count has been steadily improving. These are signs that her bone marrow has recovered and is functioning properly. Moreover, she is so happy and playful that I can tell she feels good. Unfortunately her low ANC and neurotic parents have limited Noelle's contact with the outside world.

It is hard not to get depressed particularly when peaking ahead to the upcoming barrage of treatments (consolidation, interim maintenance, reinduction, reconsolidation, maintenance) that God willing will end in 2 or so years. We know that we are blessed and that God is hearing your prayers. Also I am even more acutely aware of His wonderful handiwork. It is evident in the doctors and nurses whose skill and compassion is divinely inspired. It is also manifested in all of you and your kind prayers and thoughts. He also displays it through a sweet little four year old girl who bravely endures all of the pain and discomfort associated with this awful disease without flinching without complaining and without losing her zest for life. She is my constant reminder of God's love.

Saturday, May 1, 2004 6:35 PM CDT

The first phase of Noelle's course of treatment (the "Induction Phase" which is designed to achieve remission) ended on Monday April 26, 2004. The results of her day 28 bone marrow tests were good. And again, her status as a rapid early responder ("RER")- that is the rapidity in which she achieved remission - is a positive sign. She also tolerated the treatment rather well and her blood counts have recovered. Actually, aside from the PICC line protruding from her arm, she bears no outward sign of illness. She has been running around with great enthusiasm and energy. I dread the upcoming loss of hair and hope she continues to cope better than her parents.

On Monday May 3, 2004 we move on to the next phase of treatment called "Consolidation". This 7 week phase will be more intense and will utilize some different chemotherapy agents. The drugs utilized in this phase will lower Noelle's blood counts and will make her hair fall out. In addition to oral medication, Noelle will be getting IVs four days in a row during some weeks. Fortunately, she will not be on steroids for this phase. Also, next week, she may be getting surgery to install a port in her chest. This will allow us to remove the PICC line.

Since Noelle was on prednisone (a steroid which killed Noelle's leukemia cells thereby lowering her white blood count) just before diagnosis, we are missing an essential prognostic tool -- white blood count at diagnosis. Since we do not know and will never know this count, the doctors must assume that it was high and therefore she is in a "higher" risk category. The goal of Leukemia doctors is to insure that all children with leukemia have the same very good survival rates. Patients who are categorized as higher risk, will get more intensive therapy in order to bring their survival rates in par with low and standard risk patients. Thus Noelle may be getting a little more treatment than necessary (basically two additional drugs, vincristine and PEG-asparaginase) but we do not and will never really know.

Since I find this to be very troubling I have researched this issue and have conferred with other experts, including those at Sloan Kettering. As Dr, Kolb from Sloan put it, we must give Noelle the benefit of the doubt and treat her a little more aggressively. He indicated that this is the best current thinking. Moreover, we cannot spend the next five years poking at poor Noelle and fretting about our decision if we "under" treat her. He additionally assured me that Noelle's protocol (CCG 1961 Arm C) is well tolerated by children, is the best current treatment and that even if she was at Sloan, she would get the identical therapy. Dr. Kolb also opined that this protocol is good for her since Noelle has TEL-AML1 positive leukemia. TEL-AML1 positive leukemia (a good thing which is generally considered a positive prognostic indicator) responds well to PEG-asparaginase. CCG 1961, unlike some other protocols, utilizes this enzyme.

While we remain optimistic and upbeat, the stark reminders of the seriousness of this battle are ubiquitous. Where we live, you cannot turn without seeing posters and news stories pleading for bone marrow donors for a boy who, like Noelle, has ALL. He has relapsed and his last best chance for survival is a bone marrow transplant. Even the New York Post, usually a source of great distraction, does not let us forget. The Post has been extensively covering the story of a brave little girl who succumbed to leukemia. With a great sense of empathy I pray for these children and their families just as I ask you to continue to pray for Noelle and her family.

George

Saturday, April 17, 2004

We are entering the final week of the induction phase of Noelle's treatment. Her two and one half year treatment regime, sometimes called the five rings of hell, will consist of the following phases: induction; consolidation; interim maintenance; delayed intensification; and maintenance. During each phase the drug treatment will be varied pursuant to treatment protocols established by the Children's Oncology Group (COG) and an analysis of Noelle's responses thereto.

The steroid has proven to be the biggest problem, aside from making her extremely irritable and moody it has affected her sleep and caused her face and belly to swell. Since the steroid is finally wearing off, her personality is returning to normal. Her face swelling has abated although she still has a large gut.

Noelle continues to amaze me. She has taken her chemotherapy, which often includes uncomfortable spinal taps, without complaint. Aside from her refusal to go outside during the full sun (the drugs have made her overly sensitive to light) she has been running around outside like she did in the old days. Her bravery and that of the other little children whom we often see, is beyond inspiring. I wish I was half as brave.

I have conferred with Dr. Kolb, a leukemia expert at Memorial Sloan Kettering. In addition to being a compassionate and helpful professional, Dr. Kolb is extremely upbeat. He told me several encouraging things including:

1. The fact that Noelle's leukemia bears the translocation t(12;21) also called TEL-AM1 is a good thing for two different reasons - (i) many studies show that children with TEL-AM1 positive ALL have good outcomes, and (ii) the presence of this translocation will make it easier to identify leukemia cells which may have gone undetected thereby allowing greater precision in Noelle's treatment;

2. The protocol that she is currently on, COG 1961, is very good for treating TEL-AM1 positive ALL; and

3. The fact that her day 7 marrow showed less than 2% leukemia blasts is a very good sign and could mean that she is in the low risk category.

Doctor Kolb further offered the full support of Sloan's laboratories and facilities and will continue to consult on her treatment.

Yesterday I learned that the results of Noelle's day 14 marrow shows no (0%) presence of leukemia. Such a result would be expected after day 29, however, the speed in which it was attained is an encouraging sign. While we still have a long and painful road ahead this is good news. The speed in which the drugs clear the disease is a key factor in considering prognosis, in part I believe because the leukemia is killed before it has a chance to become drug resistant.

Through all of your prayers we have gotten the Lord's ear and he is listening. Please continue to ask Him to bless Noelle.

Thanks

George

Friday, April 9, 2004 6:31 PM CDT

We were at the clinic this morning. Noelle's glucose level is down towards normal and should be fine after she stops taking the steroids on Sunday. Dr. Mahmoud called us this afternoon with the results of her leukemia cells' chromosome analysis. Noelle's leukemia has a translocation (a chromosomal segment has moved from one chromosome to another) known as t(12;21), also known as the tel-AML-1 fusion. This is the most common translocation among ALL and is considered favorable. As far as we can tell this is good news. Also when considered with her rapid response to treatment, her prognosis should be good. Your prayers are working and I do not find it at all coincidental that we heard this good news on Good Friday.

Thursday, April 8, 2004 6:30 PM CDT

Noelle's treatment is complicated by the lack of a white blood count at diagnosis (a key prognosis indicator) and may be further complicated if the chromosome test results reveal something troubling. We still do not know whether or not Noelle has any of the "bad" chromosome translocations and we will never know her white blood count at diagnosis. Also, the steroids are taking a toll on her body and mind. She is irritable, moody and is forever hungry. Her glucose level is also high so she cannot have any Easter candy (which can only add to her irritability). The steroid treatment, at least for this phase and at this dosage, ends on Sunday. The treatment is also negatively affecting her immune system. We cannot therefore expose her to large groups of people, particularly children.

What we do know, however, is encouraging. She is responding well to the chemotherapy. After seven days, her bone marrow shows about 2% leukemia blasts. Under the parlance of the treatment protocols, seven days after initial treatment, a bone marrow with less than 25% leukemia blasts would mean that the patient is a Rapid Early Responder. Rapid Early Response is a favorable prognostic factor. Rapid Early Responders are generally considered to be in a lower risk category and may get less intense therapy. Moreover, the usual definition of bone marrow remission is bone marrow leukemia blasts of less than 5%.


Please have a Holy and Happy Easter and please continue to ask God to bless Noelle and empower her doctors.

George

Monday, March 29, 2004 6:28 PM CDT

Today Noelle received her first chemo treatment both intrathecally in her spine and systemically. The day got off to a rocky start when the nurses could not maintain an open vein even after several sticks. Noelle is not a big fan of the needle so it was tough on her. Finally a seasoned anesthesiologist appeared and calmly opened up a vein.

Noelle took the chemo like and champ and so far seems to be holding up okay. She insisted on taking some medical supplies home so she could tend to her sick Christmas bear. She goes in on Wednesday for a blood test and Thursday for an intramuscular shot of chemo.

Sunday, March 28, 2004 6:25 PM CDT

Thanks all for your terrific support. Even though I have been a false prophet of hope in the past, this time I really mean it. We are, however, awaiting the results of the chromosome test the results of which could complicate the treatment and affect the prognosis. So far we know that Noelle has pre B cell acute lymphocytic leukemia (ALL) with a central nervous system (CNS) 1 (i.e. absence of leukemia in cerebral spinal fluid). We are beginning the 29 day induction phase (kill visible leukemia) tomorrow. As I understand it, the treatment is a hybrid of the latest protocol AALL0232 (without radiation) and the older protocol CCG1961. These protocols are established by NIH/NCI along with the Children's Oncology Group (childrensoncologygroup.org). I am attaching an excel spread sheet which details my current understanding of the treatment. This treatment will be done on an outpatient basis.

After the chromosome test results come back we will seek second opinions from Sloan and Hackensack.

I will keep you posted. Please keep the prayers coming.

George

Monday, May 31, 2004 5:50 PM CDT

Noelle update May 29, 2004

In the odd parlance of acute leukemia, Noelle had a pretty easy week. The latest regime of oral chemotherapy ended on Sunday, one chemo drug was administered intravenously and one chemo drug was administered intramuscularly on Monday and she received a blood transfusion on Friday. As predicated, the drugs have suppressed her blood counts. Her low hemoglobin count required that she receive the transfusion on Friday. Her platelet count is also extremely low so she may need platelets by Tuesday. She is also, once again; neutropenic, which means her infection fighting ability, is diminished.

Noelle will therefore have a dull Memorial Day weekend since we are not going to expose her to many people and not allow her to engage in activities that may cause bruising or bleeding. This struggle is not, however, about insuring that Noelle enjoys Memorial Day 2004, 2005 or even 2006. We are more focused on the long term and look forward to having her take care of us during some Memorial Day far off in the future.

Since the treatments will last about 2 ½ years and our anxiety will last the rest of our lives, please continue to pray for her.

George

Saturday, April 10, 2004 9:26 PM CDT

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