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May 28, 2005

Enjoying Being Home

Yesterday, Grandma and Sarah went and picked up Lara and Noah from the hospital.  Noah was really ready to leave.  It had been a long stay this time and both Noah and Lara were looking forward to being home.  Noah is doing amazingly well.  His energy is up and the nausea is just not happening which is wonderful.  He does take medication every four hours for the nausea but it didn't seem to help that much in the past.  It could be that the breathing treatments were a contributor to Noah having so much trouble with nausea in the past.  The best thing about the breathing treatments is that he never developed pnemonia and that was a real possibility.  I'm happy to report that Noah's cough is finally completely gone.  He still hasn't much of an appetite but the surgeon mentioned that Noah has an enlarged pancreas which would contribute to his lack of appetite.  The pancreas should go back to normal now that the tumor has been removed.

The great news that we have to share is that the biopsy results from the lymph nodes that were removed during surgery came back and they are cancer free.  This is huge.  It was so good to hear that the cancer hadn't spread to them.

Yesterday and hopefully the rest of the week-end is going to be spent just having quality family time.  I want to let Noah's teachers (Mrs. Rose and Mrs. Armstong) know that all five butterflies were here when Noah got home yesterday.  Noah was able to set them free yesterday afternoon.  Auntie was quite concerned that they wouldn't last in their little cage long enough for Noah to see them. They did wait for his return and it worked out perfectly.  The Painted Ladies were beautiful.  That was really a fun and interesting project to do with Noah.  Thanks for providing that for Noah and for the whole family.

Noah is doing so well that the whole family even went swimming last evening.  Noah can't get his incision nor his tubies wet but there are enough pool toys for him to keep that from happening.  Even Grandma managed to join in on the fun.

Uncle Brian is flying in this evening and hopefully Noah will want to go with Grandma to meet him at the airport.  We plan on just having a good time the rest of the week-end.  Noah received a new big wheel as a gift and Lara went and got one today for Sarah.  It's been decided that these will be indoor toys this summer so that the kids can ride this summer when it's too hot to play outdoors.  I'm not sure Andy is too fond of this idea but Lara remembers that I would let my kids do this in our house during wet winters.  Of course, they used to have a basketball hoop in the family room as well but I won't even go there for now.

There's really nothing more to report and you probably won't hear from me again until Tuesday or even Wednesday.  Noah will see Dr. Cohen on Tuesday and will have his MIBG scan of Thursday.  Nothing of interest should happen until then.  For now normalcy is the welcome reality.

I hope everyone is having a great Memorial week-end just as we are having.

Much love,

Grandma

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May 28, 2005 | Permalink | Comments (18)

May 26, 2005

It's Almost Time to Come Home

Sorry that I didn't post a journal last night but Lara was home and we had a chance to sit and talk for the first time in months.  I was too tired after she went to bed to sit and write so I went to bed as well. 

I just came from the hospital and Noah is doing great.  His energy is up and the nausea seems to be under control and things are looking bright.  Lara and Andy took Sarah to dinner while I stayed with Noah at the hospital.  It was prue Grandma heaven.  Noah actually said that he felt hungry.  I ran and got a nurse as fast as I could and she brought him some toast which he ate.  They are also giving him nutrition through his feeding tube again and that seems to be working.  So, really good news if this doesn't upset his stomach.  Let's just hope and pray that the nausea is kept at a minimum.

I need to explain to those of you who don't know Noah very well about how much he loves tatoos.  I'm sure you've seen pictures of him and wondered what these marks are on him.  He loves those silly Cracker Jack prize type tatoos that you wet and it leaves a printed design on your skin.  He usually has something on one of his arms or legs.  Even Amare commented on his nice tats when he met him. I found these really great brightly colored tatoos that I gave to Noah when I arrived last Saturday.

Tattood1 Yesterday, Noah had Lara put a pyramid in the middle of his forehead.  Noah convinced Lara today to put a tatoo completly surrounding his cute little bald head.  This is what I walked into tonight at the hospital.  It is the funniest thing that you have ever seen and sooooo Noah.  You know how much better that he must be feeling when he's up to doing these silly things again.  Andy took a picture tonight and we will post it.  That's my Noah.

We had a great visit again tonight.  Playing video games and watching television.  There's not a whole lot to do in that hospital room.  Noah is really looking forward to coming home tomorrow.  His chemo should end at about 8:00 A.M. and then fluids have to be given for a few hours so if everything goes as expected, he should be home by noon.  His Shingles have completely healed so he was at least cut loose today from isolation and was able to go down to the play room.  The nice thing is that even though he didn't need to be in isolation, they kept him in the private room.  That means that you aren't disturbed by a roommate and Noah and whatever parent is with him gets a better night's sleep.

Quiltednoah1 I also want to thank Cathy Hicks' 5th Grade class at St. Anselm's School in San Anselmo, CA for the adorable quilt that they made for Noah.  There's going to be a picture of Noah lying on it at the hospital.  Unfortunately, for now, it's a little too warm to have it on top of him but I'm sure that he will enjoy using it once it is cooler.  I really want to thank each and every child in the class for coming up with their own unique design.  A big thanks, too, to Cathy Hicks for having the class do the project.  I know that the class prays for Noah everyday as well and those prayers seem to be working so keep praying.

Noah was suppose to have a MIGB scan before he left the hospital but it couldn't be scheduled this week so he will have it done next week as an out patient.  They did one of these scans after his first round of chemo to determine where Neuroblastoma cells were in his body and it will be done again to determine how many are left after four rounds of chemo.

Auntie just called and she's waiting to post the most recent photos of Noah and so I will end for now.  Noah has just once again crossed a huge hurdle in his Neuroblastoma protocol and seems to be doing it with his usual strength and courage.  Again, thanks to all of you for your support and concern.  I know that the prayers help so please keep them coming.

With love,  Grandma

You're doing better with leaving comments but we'd love to hear from more of you so please try and leave just a quick note if you have the time.

May 26, 2005 | Permalink | Comments (13)

May 25, 2005

Round Four has Begun

I first want to apologize to the incredibly thoughtful people who bring dinner to the house every third night for not hearing them knock at the door.  Both Saturday night and tonight I didn’t hear them.   I just want you to know that we really appreciate all that you do more than you can even imagine.  I also want to apologize to Tracy Allen who by now must think that Grandma belongs in a home.  I can’t believe that with all that you all have to do with your own young families that you still find the time to think about bringing dinner to us.  I hope that your husbands are taking you out to dinner on these nights and that you don’t have to plan dinner for two families.  It’s so great now that Lara and Andy are having such a long stay at the hospital that we can bring all of these yummy dinners to them.  Sometimes it’s for lunch the next day but it certainly beats hospital food.  Again my most sincere apologies and I will start to listen for the door.

I am also grateful that word got out that Noah could have visitors at the hospital.  Yesterday, Amy brought Calvin and Clayton by to play and today Francine brought Collin and Curtis by to play.  That really helped break up the boredom for Noah since he was really feeling well.  Unfortunately, things aren’t going so well tonight.  Noah started round four of chemo this morning and by this evening it was hitting him with a vengeance.  He’s already been sick a few times and Lara is questioning if it’s a good idea to keep the feeding tube in.  She spoke with the nutritionist this evening about removing it and will discuss it with Dr. Cohen in the morning.

I have such a love/hate relationship with Noah’s chemotherapy.  I was so worried when he developed Shingles and that he wouldn’t be able to start his therapy on time.  Then I’m so sorry that he has to go through being so sick again.  It’s a horrible choice to have to make. I can’t even imagine what Lara goes through every time.

I must admit that when Noah first got sick that I was thinking that people were being so considerate and thoughtful because of hearing about a catastrophic illness in a child would touch your heart but that in time your interest would wane.  Let me tell you that I was dead wrong on all accounts.  The support and continued caring never ceases to amaze me.  So far on this website, there have been almost 19,000 hits and there were nearly 10,000 hits on the Caring Bridge sight that we were using in March.  On both last Wednesday and today there were 700 hits.  We are averaging over 300 hits a day. 

Noah deserves to have his parents’ undivided attention and because of all of you, he is getting it.  The dinners, the fund raisers, the gifts, the cards and the prayers always pour in and there doesn’t seem to be any wavering in the volunteering of what one can do to help.  The “Circle of Love” wrist bands are another huge show of support and thank you for buying them and wearing them.  The more attention brought to Neuroblastoma, the better things are.  Amy told me yesterday that when she ordered the first five hundred bands, she never thought that this would grow to the extent that it has.  Thousands of the wrist bands have been sold and I really thank you for that as well.

A few pictures were posted on the website today from the Water Slide Party yesterday and if anyone has any others, please let us know and we will post a few more.  I was wondering if there were any of Michelle and her family because I would love to post those if that would be all right with them. 

Once again it is getting late and Sarah will be up bright and early so I must end.  I really want to encourage more of you three hundred people that are checking the website to please leave a comment at the end of the journal.  Now that Noah isn’t feeling well, it’s a great thing to read to him.  We really do love hearing from you and to know who all of you are.

Please pray that the side effects from the chemotherapy will not continue on as badly as it seems to be going.  It would be so nice if it could be kept to a minimum.

With much love and appreciation to each and everyone of you for caring about Noah,   

Grandma

An added note to the Ernst family…Joe’s late night internet shopping spree is a huge success.  Your timing could not have been better.

May 25, 2005 | Permalink | Comments (16)

May 24, 2005

Water Slide Extravaganza

I first want to let you know that I flew into Phoenix and Brigit flew back to California with Sean on Saturday morning to spend some time with her husband.  Jamie is actually taking a week off so that they will have a whole week together.  It was originally planned that both Brigit and Lara were to be in Hawaii this week with their families but everything changed when Noah became ill.

I also want to clear up some misinformation that I had Brigit post on the last journal entry.  It is true that Noah has Shingles and that he was moved to isolation but it does not mean that he can’t have visitors.  They moved him as a precautionary measure because Shingles is a virus that is related to the Chicken Pox virus.  Shingles is not an airborne virus and is not as contagious as Chicken Pox.  You would have to be in direct contact with the rash at its outbreak for there to be any problem.  Anyone who has had the Chicken Pox or has been inoculated against them would not even have a problem with that much contact.

Being in isolation has both its advantages and disadvantages.  The room is a private one and that is the positive but Noah can’t leave the room and that is the negative.  He’s feeling well enough to play and would love to be able to go down to the playroom to be with the other kids but can’t.  The other problem that this has caused is that Noah was suppose to start his fourth round of chemotherapy today but it has had to be postponed until tomorrow. 

I have to tell you though that I hadn’t seen Noah in over a month and it does my heart such good to see him doing so well.  He is recovering from the surgery nicely and seems to no longer have any pain whatsoever.  His spirits are good and he looks great.  That feeding tube is the best thing that ever happened to him because he’s still not eating but has managed to keep his weight at about forty pounds.

Cropped_sarah_and_grandmaToday was a very busy day for both Grandma and Sarah.  Lara’s friend Francine picked us up this morning and took us to the Water Slide Extravaganza that was planned and organized by the Foster Family.  What an incredible fund raiser once again organized by such a loving and generous family.  It was truly a family event with Michelle’s parents pitching in as well.  Our heartfelt thanks are sent to each and every one of them.  Their tireless work and effort in this heat is truly amazing.  I wanted to find Michelle to thank her for doing all of this and it turns out that she spent the better portion of the morning inside one of these huge inflatable slides helping the little ones climb to the top of the slide.  Now that it is dedication to making sure that children have fun.  I’m afraid that Grandma was a bit overwhelmed by the heat.  It’s a bit of an adjustment leaving 60 degree weather in San Francisco to 110 degree heat in Scottsdale.

This waterslide party had 150 preschoolers in attendance.  I can’t tell you how cute everyone was.  It takes a lot of planning and ingenuity to create such a fun event for such little ones.  Once again thanks to the entire La Casa community for their continued love and support.  I don’t think anyone could be anymore fortunate in having the support system that the Nelson family has received.  I know of one little girl who had the best time participating in getting soaking wet. There was face painter as well who painted a bumble bee on her foot.  Then there was her incredible consumption of hotdogs and Krispe Kreme doughnuts.  That of course would be our Sarah.  There was also a man creating incredible balloon characters for the kids as well.  There was a little something for every child.

Organizing and working like crazy was only one of Michelle’s special talents but she also had organized a raffle and silent auction.  Her tireless effort is truly amazing.

After the party, we came home for Sarah to take her nap.  Lara called and said for us to come to the hospital and that she and Andy would take Sarah out to dinner while I stayed with Noah.  Nothing warms my heart more than an invitation like that.  I had the best visit with Noah.  He is the sweetest little guy that you would ever want to know.  I received the best compliment that I have ever received this evening.  I was told that I was a “cool” Grandma.  I am so blessed to have these grandchildren in my life.  I know that every grandparent feels this way but I really cherish the fact that I have wonderful little people to brighten my life.  Seeing Noah smile again is so heartwarming.  All of those prayers are working so keep them coming.  Another big day starts tomorrow with round four.  These will be the same chemicals that were used for rounds one and two.  The doctors have also scheduled a MIGB scan for some time this week.  I will keep you updated with all the technical information in a future journal.

I can’t tell you how happy I am to be back in Scottsdale .  It is so hard for me to be so far away during such critical times.  I’m going to try and make every minute count while I’m here.  I’ll sleep when I have to go back home.

Again, a huge thanks to the Fosters and the entire La Casa community.  Keep us in your heart and prayers.  It’s working.

With love and gratitude,  Grandma

May 24, 2005 | Permalink | Comments (3)

May 22, 2005

Maybe only a Visit from Rascal Allowed!

Hey Solo Shingle:

I just got word that you have a Shingles break outNoahrascal2 .  Apparently you were vacinated for the Chicken Pox virus when you were younger and the virus lives in you.  Your immune system has dropped so low that you developed a rash that is what they think is Shingles.  That means you are in ISOLATION and NO VISITORS are ALLOWED.

Before you were put in ISOLATION, I heard you had a canine visitor named Rascal.  By the looks of the picture your dad sent me, I think you two became friends.  You don't let many people share your bed with you.

I am late for a date with Uncle Jamie, so I have to run, but I will write you more later.  I am sorry to hear that you have Shingles and that it will delay your treatment and cause you to extend your stay at Hotel de PCH.  The good news is your parents knew something was wrong and it wasn't just a rash and got the doc's attention and hopefully they are doing their best to treat you.

PS Sorry I have to be the "Germ Warden", but NO VISITORS ALLOWED!!

Talk to you again Soon. XOXOXO-Auntie

May 22, 2005 | Permalink | Comments (7)

May 20, 2005

T.G.I.F.

My Lil’ Larva:

Well you know what Friday means?  Amy took Calvin and Sarah to the mall this morning so Sarah could get her fix and say hi to all Maggie's friends at the Pet Store.  The good news about Fridays are it is almost the weekend when you get dad all to yourself.  The work week is wrapping up and you can hang out with your Buddy and have him make you laugh.  He will spend tonight and the next night with you.  You must be someone pretty special for a man your dad's size to join hospital living and learn how to sleep sitting in a chair by your bedside.

I was thinking that life as we know it must have been God's plan.  Well, I don't understand why you had to get sick as part of the plan, but I think his plan was to have you be the oldest in your family and mine.  That way all your crazy relatives would have time to obsess over you and think you were the "apple of God’s eye."  Then your sister Sarah came along and I think it was planned that she slept the first two years of her life so again we could all could get to know you better these four plus years.  Then came Baby Sean and from the minute he was born he has received compliments as being such a happy baby and so easy.  It is a very good thing, because he has adapted quite well to life in his Exersaucer and having your sister and Elmo be his primary caregivers. Both Sarah and Sean are so easy going and "super sleepers."  Thank God! It makes it a little easier on me and your parents so that we can better focus our attention on your needs and care.  I don't know many two year olds that will get in anybody's car as long as they are headed for the mall or any 6 month olds that still sleep more than 16 hours a day. If the two little Rug Rats had different personalities, perhaps we would be sending Auntie off to a different kind of hospital.

ALRIGHT, back to more important things like YOU! I had a chance to talk to your mom in the hospital.  Dad returned her cell phone to her on my behalf.  She mentioned that you both had a good night's sleep for being in the hospital and both of you are able to block out roommates and other not so friendly sleep disturbances.  She mentioned that you still haven't had any interest in food or drink, but you haven't gotten sick that much and the feeding tube has been able to do its magic and continues to help you become big and strong like your dad.  Well we all know that "dad is all powerful", but some day maybe your muscles will be bigger than dad's and the Incredible Hulk.  Mom also mentioned that she received not as good of news as anyone would have liked from the Pathology Report.  There were still active Neuroblastoma cells in the tumor they removed.

We were all hoping that the chemo had blasted all those bad cells back to the Dark Side, but we are not surprised that some of them managed to stay alive.  Your treatment is an art form.  Doctors and scientists try their best to develop these protocols that are the best treatment for different types of cancer.  The trouble is as we all know everyone is different and unique in their own way.  Although little Jake from Chicago and you were both diagnosed with Stage IV Neuroblastoma, you both have reacted differently to your different treatments.

So now looking toward the future; we just have to focus on how to get rid of the clone troopers left, before they have an opportunity to clone themselves again.  Everyone thinks the answer is more chemotherapy.  The good news is you seem to be recovering from surgery surprisingly well.  You aren't a rookie to the knife anymore and you seem to know what your body needs to heal.  Part of that involves a rise in your spirits.  Mom said you even managed to muster up enough energy for a game of Plug n Play Spiderman.  Looks like after the weekend you will start your therapy and be hooked up to it for about 72 hours.  Depending on how you react, you will then be discharged from the hospital.

You will return home and be welcomed by some good care.  Grandma Kathy will be here to wash all the linens you mess, but more importantly to spoil you rotten.  Even when you are greener than green you manage to convice her to take you to Target or Toys R Us to get something you just have to have.

Painted_ladiesThings are brightening up around here.  The Bug Lady has a birth announcement.  3 of your 5 "Painted Lady" caterpillars that Mrs. Rose and Mrs. Armstrong got for you since you weren’t able to do the project at school, have emerged into beautiful butterflies.  I have made a colorful garden for them to enjoy until you have a chance to meet them. They like you are special and unique and no two butterflies have the same pattern for their wings. Unfortunately, it doesn't look like you will be home soon to enjoy them.  So now we just have to convince someone (I think Grandma Kathy is your easiest target; you have your way with her) to bring your garden to you in the hospital.  We have to hurry fast though, because each butterfly may travel up to 1,000 miles in her few weeks of life and we need to release them soon so they can start their journey.

Sean and I head home tomorrow, but not to worry.  I have a cell phone and a laptop like your mom, which are modern marvels that allow for me and others to keep in touch and to send you millions of kisses from miles away.  I will be sure to study up on Star Wars and learn everything Uncle Jamie knows about being a fellow Jedi, so when you are up for talking or battling, I can impress you with my knowledge instead of saying you have to ask one of your Uncles.  Your sister Sarah has a sleepover with Grandma and Grandpa Nelson tonight and I will be sure to have her learn some jokes from Grandpa to share with you.  Remember she is not even three so she will usually ruin the punchline and that is ok.

PS I have pasted a picture of one of your pretty “Painted Ladies” in her garden.  She has 10,000 eyes but there are not as BIG, brown and beautiful as the two you have. She has a siphoning mouthpart and she would kiss you if she could, like she was sucking your lips out of a straw.

XOXO-Auntie

May 20, 2005 | Permalink | Comments (4)

May 19, 2005

How About a Grunt?

Hey Sick Noah:

Well these are the times that both of us would rather forget.  Your smile is lost, but I am sure it will return sooner than later.  Your sister Sarah, Baby Sean and I packed up the car and hit Hotel de PCH this morning.  We came to cheer you up and quote your mom by saying, "HAPPY TO SEE YOU."  I noticed she says that a lot these days when she sees Sarah and the phrase is contagious.  Now when Uncle Jamie visits or when Sean or Sarah wake up from one of their naps, I think it is fun to say "HAPPY TO SEE YOU" when they first wake up and usually I get a BIG smile in return.

Well, perhaps you weren't that HAPPY to see us, but that is ok.  It is to be expected.  I don't think you said two words to one of us and not even any grunts or finger pointing this time.  The nurses and doctors came in to check on you and ask you if anything hurt, but of course you always say you are good or pretty good or don't respond.  When you complain about pain to your mom or dad we know it is pretty bad pain.  Another time that I would like to forget is shortly after you received medicine in your tubies to stimulate your good cells before they harvested them in Tucson, you would moan and wail that your back hurt and then your arms hurt.  Your mom and I would frantically rub every square inch of your body that we could wrap our hands around to make the pain stop.  You would scream that it really, really hurt.  No that it really, really hurt and you needed medicine.  When you ask for medicine, we jump and give it to you as quick as we can, because you never ask for medicine. 

Mogu_and_me_2I was glad to see there was no moaning or screaming this morning and that they were managing your pain with an epidural.  I heard your nurse in the PICU taught you to grab your Mogu doll when you had to cough and then it wouldn't hurt your incision as much. Those nurses sure have some good tricks up their sleeves and I am glad Mogu can give you the COURAGE you need at times.

When we were leaving the hospital, Amy had arrived to entertain your mom while your dad works and perhaps cheer you up.  I couldn't but notice that she had something Star Wars with her.  I wonder if her method worked and she was lucky enough to get a famous Noah smile. 

Perhaps you have been moved out of the PICU and back to sharing a room in the Oncology wing on the second floor.  I hope you scored a room with a view. Well there is not much view out there today.  It is a "Spare the Air Day" and Auntie EPA feels bad for Mother Earth when we have these days.

I haven't talked to your mom in awhile because silly Auntie accidentally took your mom's cell phone home by mistake.  I feel bad cranking the AC on such a smoggy day so I think instead we will be beating the heat with a little swim in the backyard.  Besides, I can only take so much of the Wiggles video your sister rented yesterday at the Library.  4 Grown Aussie men dancing and singing is not my thing. I know you understand what I mean.  It definately is not as cool as Star Wars or even JoJo's Circus for that matter.  More so, your sister needs to learn to be a fish like you so when you get your tubbies out you two can race in your backyard pool. 

P.S. You had over 1,000 hits on your website yesterday when I checked the stats late last night.  That is A LOT of people checking in on Sick Noah and anxiously awaiting for a photo with a smile to be posted.

XOXO-Auntie

May 19, 2005 | Permalink | Comments (6)

May 18, 2005

Mission Accomplished!

Hey Jedi Noah:

I just heard word that the surgery is complete and your surgeon believes he removed all the tumor which he described as a flattened golf ball?  Did Uncle Scott put his golf ball in there at your Tournament?  Anyhow, your mom and dad are anxious to see you and they told me that you are in the ICU still on a ventilator.  Now your parents and your doctors need to decide when to give you your next round of treatment to rid you of the Dark Side.  They are saying about 5 days from now you will be hooked up to some chemo.  Your parents of course want you to be strong enough before you are blasted again by the "blaster pistol" and they are well aware that you just had major abdominal surgery, yet your oncologist Dr. Cohen also wants to blast the cancer cells before they have a chance again to clone themselves like Clone Troopers. So I guess only time will tell when the next round will happen.

So now it is time for recovery in what your mom calls Hotel de PCH. Your mom is silly because the last time I checked, at least at hotels you don't share a room with strangers.  At the Hospital, If you are feeling up to it, I hope you frequently visit the playroom and beat all your competitors at the Pokemon Memory Game.  Maybe if you are real lucky, the Star Wars characters will visit the hospital again and you can battle Darth Vader and save Princess Leia and get a big smooch from her.  19299501_68198511_0

If not that is ok too, because you were able to see most of them yesterday at the hospital when you were getting blood work done. 

PS Here's a picture of you and your fellow Star Wars Friends for you to remember.  I couldn't but notice you are standing next to Princess Leia. Sweet Dreams and "May the FORCE be with you."

XOXO-Auntie

May 18, 2005 | Permalink | Comments (10)

Courage, Bravery or Strength?

Dear Courage, Bravery or should I call You Strength?

I sent you off to the hospital with 3 bracelets to choose from.  One was Courage, one was Bravery and one was Strength.  I wonder which one you chose to wear?  Perhaps all 3!! I heard that you went into Surgery today around 12:30.  While you were getting prepped for surgery this morning, your sister Sarah, Baby Sean and I went to the Library.  Sarah made sure that we checked out a video for you to watch when you return home from the hospital.  We have the video for three weeks so we better hope that you will be home from the hospital by then.  We chose a Pokemon video, of course. 

Well your sister has been asleep taking her nap probably about the same time you have been snoozing during surgery, but I have been thinking about you this whole time.  I heard that the doctor will have to remove one of your adrenal glands and will also remove some lymph nodes to biopsy.  There was a 3 percent chance that part of your pancreas and one of your kidneys would have to be removed.

Well it is past 3 pm and they were hoping to have things wrapped up by now, but it appears the tumor is more twisted and wrapped around then they had anticipated.  That means more time in the Operating Room. And for all your committed readers, keep the Prayer Chains going, and going today!!

I bet your parents are pacing back in forth in the Waiting Room by now.  Anyone who has spent time in Waiting Rooms knows it is not much fun.  I got a good night sleep last night, in anticipation of spending lots of time with your sister Sarah this week while your mom and dad will be switching off at the hospital.  Grandma Kathy will take over duty on Saturday when Baby Sean and I head home for a 10 day visit.  I went to bed before your mom did.  She stayed up late being a "net jockey" looking for a good research study to fund with all that money raised at your Golf Tournament.  Your parents really, really want to fund research towards "relapse".  Your type of cancer has such a terrible occurence of relapse.  Remember Jake the little boy I told you about?  Well he was diagnosed exactly a year before you and he went through so much in one year and he has already relapsed and is going through some difficult times again.  Others can check out his website again to check in on him and his battle at www.justforjake.com

My hope is to return back to Arizona after Memorial Day and to see you eat, eat, and to be feeling as you would say "pretty good" with hopefully one thumb up.  Boy was I lucky to see you having so much fun at the Golf Tournament and running around this past week.  To be quite honest, I hadn't seen you look and feel so good since Thanksgiving.  Looking back on things when I visited you back in January, you were kind of grumpy and were misbehaving.  I thought at the time you were jealous of baby Sean.  I guess you weren't feeling so good.

So when I return Buddy, maybe you will be eating something besides pizza and drinking something besides lemonade.  I think it is pretty symbolic that you coincidentally are obsessed with lemonade, because the little girl named Alex who lost her battle to this dreadful disease called Neuroblastoma started a Lemonade Stand when she was about your age.  She inspired others to host Lemonade Stands all over the country.  Rumor has it that her cause has a goal to raise 5 million dollars for Pediatric Cancer Research this year to help families like yours.  On this day alone 46 families will learn that a child was diagnosed with a pediatric cancer and as you know their lives will change forever.  The incidence of childhood cancer is increasing at a greater rate than any other age group aside from those over age 65.  Those statitistics are alarming!!

But don't worry, because me and others are determined to make a difference. That's all for now, but I am sure someone will post another entry once your surgery is complete.

All My Love:

Auntie

May 18, 2005 | Permalink | Comments (1)

May 16, 2005

Not Settling for Par - Fore Noah

Friends, family, golfers and volunteers,

We were so grateful and fortunate to have all of you supporting Noah’s cause yesterday.  Your outpouring of love, compassion and energy to participate is certainly heartfelt by our family.  The money raised is going directly to the Children’s Neuroblastoma Cancer Foundation, in turn, positively affecting many families who have been struck by the disease.   One day there will be a cure….and you all will be an integral part of the team that supported the research to discover it.

Special thanks to the following people to make it possible:

Jane and Bob McNichols – golf course donation

Jay Larscheid and staff– tournament management team

Jenny Larkin and The Barbeque Company crew / Shamrock Foods - Catering

Doug Jameson and family / Premier Financial – BBQ Underwriting

Brad and Laurie Ritt – Fore Noah Committee

Kathy and Jerry Ritt – Fore Noah Committee

Keith and Dana Gapusan – Fore Noah Committee

Meaghan and Court Fable – Fore Noah Committee

Scott Nelson and Kory Kredit – Fore Noah Committee

Hole Sponsors

Brian Pavlet – Pro Long Drive Champion

Auction Items and Raffle Prize Sponsors

Volunteers

Families

Event Highlights:

Playing golf on a Sunday afternoon - $100

Raising money for Neuroblastoma - $32K

Getting together with 200 special friends for a big party Fore Noah - Priceless

Noah wrapped it up beautifully at the BBQ:

“Thanks everybody!”

“May the Force be with you, always”

Again, Lara and I thank you all for taking part in the day and being a link in Noah’s Circle of Love~

With love,

The Nelsons-

May 16, 2005 | Permalink | Comments (8)