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March 30, 2005

Hey Amare Fan

I can't believe it; really happened!! You met #32 Amare Stoudemire of the Phoenix Suns earlier thisNoah_amare00 afternoon after your doctor's appt. with Dr. Cohen. Amare was so touched by your story that he met you today at Phoenix Childrens' Hospital. Rumor has it, that Amare has been having bone spurs and shouldn't even be walking around. The boss told him not to go today, but he didn't listen because he was not going to let a special kid like you down. He came bearing Nike and Suns gifts for you and your mom and dad. He had learned that you are a huge fan of your local team and that you have a mean dunk. So it all came together thanks to your Uncle Scott and some nice people at his work, Westcor. I have added a few new photos of your fun day today with your new friend, Amare to share with you and your fan club.

From what you have told me, you and Amare will be on the pre-game show and also during the half-time show. This will air tomorrow night on ESPN during the Phoenix Suns versus the 76ers. We will all be glued to the television screen to see our new celebrity join the life of celebrities. Based on the pictures Uncle Kory took, it looks like Amare even helped you with an infamous dunk. Amare and the Phoenix Suns wanted to publicize the work that they do in their community and how it can benefit Phoenix Childrens' Hospital and a cool kid like you.

He even said that he would wear your "Circle of Love" bracelet on his wrist the rest of the season, hoping it will make you better. He also is getting the support of the team and they are going to post your website on their homepage so new Noah fans can buy your bracelets and support you and your family. AWESOME!!!

So little man, I already knew in my heart that you were a celebrity, but I am glad to know that "Stat" himself thinks you are the "coolest kid" in town. I can't wait to be able to fight you for the blue chair tomorrow night and see you shine. So stay tuned, the game starts here locally on ESPN at 8pm - SUNS vs 76ers. It is a great way to celebrate before you head back to Phoenix Childrens' on Thursday for more therapy.

Your #1 Fan:  Auntie

March 30, 2005 | Permalink | Comments (6)

March 26, 2005

It was a very good day...

Since the completion of Noah's first treatment, we have been administering Neupogen - a drug that encourages stem cells to mature very quickly into Neutrophils (a type of WBC). In order for him to move forward into the second round of therapy, the Dr. wants these numbers climbing without the crutch of Neupogen. We stopped the Neupogen on Monday. Today's blood tests indicated that his body has responded well by producing strong numbers of WBC on his own power. We'll be doing the same exercise for Procrit - a drug that assists in the generation of red blood cells. His final dose of Procrit is on Friday. The third component to moving forward is his platelet production. The magic number is 75,000 here and he is currently at 49,000 without recent infusions. NOAH IS POWERFUL!

His weight is stable but has not yet started to increase. A few pounds gained over the next week would be helpful in preparing him for the next round. In-Out Burger here we come!

What's next - Generally speaking, the second treatment will be much like the first - same drug cocktail, intensities and timeframe in the hospital. Hopefully we can spend much of the recovery at home again. Shortly after his rebound, we're off to Tucson for a autologous Stem Cell Harvest (a technology that has replaced the Bone Marrow Harvest). The U of A Pediatric Hematology/Oncology department are leaders in this field, so we are fortunate to have these services in our backyard....let alone our almamotter.

Neupogen will play a key role in this procedure. Because it causes such a rapid increase in neutrophils, the bone marrow is forced to push the stem cells out of the marrow and into the blood to make room for all the new cells. Timing is critical for this procedure. Once those stem cells have been forced into the blood, they want to mature into neutrophils as quickly as possible. The whole key to the procedure is to collect them before they do that, and whle they are still uncommitted stem cells. These harvested stem cells should be fresh and clean from the first 2 treatments. They will be 'cryovaced' for the transfusion toward the home stretch of the protocol.

After the SCH, we will go back to Phx. Children's for another 2 rounds of treatment. From there, he should be ready for the tumor removal followed up with 2 more treatments and finally the stem cell/bone marrow transplant to be peformed in Tucson again. We'll be down south for 3 months. The total protocol will be completed in 9 - 12 months.

OK, onto the fun stuff. Toni Burandt and Kelly Neill organized a fundraiser yesterday at Pump It Up in North Scottsdale. They raised over $1200 in a fun-filled 3 hours of jumping and sliding. The ladies quickly developed pictures and brought them to Noah last night. BIG SMILES! Thank you ladies-

The Dr. also cleared to have a friend come over today. Noah was thrilled to spend a little time with his buddy Caden. We're also going to do a Park Day this Saturday @ 11a until ?? at Pinnacle Peak Park (PP and Williams). This is open to anybody who would like to say hello to Noah.

Thanks to all those helping with Meals on Wheels this week - it is a huge help. And, as always, thanks to everyone for their continued support!

Pura Vida~

March 26, 2005 | Permalink | Comments (2)

March 20, 2005

Random acts of kindness

Clouds cleared and the sun did it's thing at the Nelson house today. We spent the day playing games, eating chips, salsa and Michael's Chix Noodle Soup, walking/swinging at the park and giving sister Sarah a hard time. AHHH......normalcy!

Back to the Dr. on Monday for a blood count check. I'm putting my money on some strong results and feedback on his cell development progress over the weekend. Mouth sores are diminishing and throat and incisions healing well. Come on immune systems-

Gifts, meals, support bracelets, future fundraisers, class videos and blood drives continue to keep our bellies and hearts full. Special thanks (although ALL of them are special) to the Kingsleys for orchestrating Noahs Circle of Love bracelets - Amy & Ron, I hope you are being bombarded with visitors and mail runs. Uncle Scott rallied the troops at Westcor/Macerich to donate over 40 pints of blood - including a few virgin givers. WOW! Westcor also sent a thoughtful basket of goodies that the kids love to dig through. La Casa is putting smiles on faces with their kind tuition offerings, classmate video hellos/prayers/cards and various visits from teachers, staff and families of fellow students.

It's been great having the family here to help and entertain. Between Uncle Brian making coffee runs and Auntie keeping the refrigerators stocked, it is a rather efficient and motivated household.

Here's to random acts of kindness!

Con amor~

March 20, 2005 | Permalink | Comments (0)

March 19, 2005

Dear Couch Potato

Well same old, same old around here, although we have had Uncle Brian the last few days as entertainment. Unfortunately he has always been the target of most my jokes over the years. After a few rough nights out with Brian, Brent, and Colin Higgins, he has been glued to the couch with you all day. He says he is tired, but he has what we call a hang over from too many “Irish car bombs.” Tell him he doesn’t know what tired is until he is ever as sick as you or if he ever births a watermelon from between his legs. Boys, will be boys. Except for you; you will always stay sweet, right? The first night their excuse was to celebrate for St. Patty’s Day. Now their excuse is Spring Training. What will it be next for those yahoos? Brian Higgins was Grandpa Tim’s best friend and he and his boys are in town for Spring Training. Grandpa Tim and BT (that is what we call him for short not to confuse him with Uncle) met when they were little boys, like you. Colin and Brent are BT’s boys and they are roughly the same age as Uncle Kevin and me. We have spent many of good times with BT and the boys. Perhaps we have all had too good of times together over the years. I hope for your mom’s sake you don’t follow those bozos always think that you are on “Spring Break.”

It seems as if you and Uncle Brian are on a hunger strike together or shall we say a liquid diet. You still don’t have the appetite we had been hoping for and you still don’t have the energy either, although your red blood cell counts are higher than they have been. Today is kind of a gloomy day and we are trying to motivate you for a wagon ride to the mailbox. Yes we are talking baby steps here. We are hoping that you will walk farther than from the infamous blue chair to your bed and back. Where is all that AZ sunshine I had been hearing about? I think we are all suffering from a little cabin fever. Dr. Cowen says you can make trips out to open aired places like the mall. Just what your little sister has been waiting to hear. He doesn’t suggest confined places with lots of people and germs. So church and smaller indoor spaces will have to be put on hold for now.

Speaking of your little sister Sarah, she is back from grandma Georgia’s and Grandpa Ron’s house. She went to the doctor’s yesterday and we were told that her little cough and runny nose is probably a virus. We think you might have the same thing too since your nose has been running and you have been coughing a little too.

Earlier today, your mom received a call from a nice lady who also lives here in town who had heard about you being sick from a friend. She had a little boy named Wil who became sick in 1997 when he was about your age. Well now he is 12 and still strong. Wil’s mom had a lot of good advice and support to offer your mom. Now we will have to do lots of homework on the internet to make sure you are receiving the best care. Boy if Uncle Jamie thought I was a net jockey now, just wait. There is a world of knowledge out there and that knowledge may be what cures you.

You just asked to lay down somewhere else. It looks like Uncle Brian just won the battle for the blue chair. We have all been playing a game of musical chairs around here. As for real excitement, the not so friendly local service repairman finally came back today with the part to fix the washer this morning. Boy do we have mountains of laundry everywhere. Where is that Queen of laundry? The royal Grandma Kathy will most likely be coming back out when you have to go back for your next round of therapy. Most likely that will be early April when you are well enough again to climb another mountain. This mountain will be even bigger than the pile of laundry though.
You received more platelets on Friday so that your blood would be more likely to clot. 

Monday you will be back for a visit to Dr. Cowen’s. Next weekend is Easter and most likely Uncle Jamie will come for the celebration. We will have to think of something fun to do. I try to tell you jokes and make you laugh, but you don’t really find my jokes funny. I guess I don’t know how to behave like a four year old. Clearly your Uncle Jamie does though, because he was able to get you to giggle when he was here.

Ok dude I will let you “Sleeping Beauties” rest and Sean and I are off to pick up another prescription for you and go for an adventure to Walmart. SuperWalmart definately is an adventure. Ciao for now.


March 19, 2005 | Permalink | Comments (0)

March 16, 2005

Neuroblastoma Warrior

Hey man. Sorry it took me so long to write. You hadn’t been talking much these past few days. You said your throat hurt too much to eat or speak. When you lost your voice so did I. I didn’t have any Noah quotes to inspire me until last night when you popped up from your dad’s blue chair, which seems to be primarily yours at this point. All the sudden we hear this hoarse voice saying “How about some broccoli?” Only you being the good eater, would request Jolly Green Giant Food.

Your mom has been a short order cook these past few days trying to figure out what would not hurt your throat and would taste good. It broke my heart last night when I was reading from the Glamour magazine that Mc Donald’s chicken pieces had 56 grams of fat. I did not quite realize that “a little pitcher has such big ears.” You started to cry and said you wish that you could eat a Happy Meal. You just want to be a normal kid and enjoy a burger and some fries. These past few days, I think we would all rather forget them. It is an ever constant battle with pain management for your parents, your doctor and you. Trying to figure out what medicines work and still keep you alert and your digestive tract working is a summary of what has occurred since my last journal entry. We need to pack on those pounds you have lost and I think Mc Donald’s and all its infamous calories and fat may do the trick. Pretty soon maybe you will be even saying, “Supersize me.”

The good news is Uncle Brian came to the rescue, once today at least. He just came back with a cheeseburger Happy Meal with no onions, of course. We all just jumped for joy and your mom said she was so proud of you for eating a few bites of your burger and fries. Oh what makes a mother proud at this stage in the game? I can’t say your Uncle Brian came to the rescue earlier today. I had washed Maggie’s bed. Did you hear me right? I washed that silly dog of yours’ bed. Well I think all Maggie’s hair did the washing machine in. Or could we blame it on the Queen of the Laundry? Earlier in the day when the washing machine wouldn’t drain, I came to your mom with the bad news and asked for a wet/dry vac so we could suck all the water out of the basin. She responded with, “we need a hose and we can just siphon it out.” Before I had to respond your mom was sucking those suds right out. After a few sucks and no siphoning later we remembered that Uncle Brian was on his way. In summary your Uncle Brian pushed the machine around, spilled a few buckets full of water on the floor, dirtied a few more towels and then suggested we called the Maytag Man. Hopefully tomorrow our local friendly service repairman will be our rescue hero. If it can’t be fixed, we ought to blame it on Maggie, what do you think?

I just wanted to let you know that you have been added to 2 other websites. You are under the section Neuroblastoma Warrior which inspired my greeting to you tonight. The website was started for a little boy in England named Jamie. England is a country way far away. I studied there for a quarter during college and let’s just say I quickly found out those saucy Brits have Big hearts. This little boy’s name is like your Uncle Jamie’s. Do you miss him yet? I do, and so does Sean, I am sure. Boy did I miss him today when the washing machine broke. He would probably been able to at least diagnose our washing machine’s illness. Here’s the link for the website where there are more warriors just like you fighting Neuroblastoma. Check it out when you get a chance

Furthermore, I just heard from a man named Tim from the Arizona Law Enforcement Canine Association that he has also added you to their website. I can honestly say I have never met a Tim I didn’t like. They are having their 3rd Annual Desert Dog 2005 Police K-9 Trials on April 16th and 17th at the Scottsdale Municipal Stadium and they are going to host a lemonade stand to help fund research for Neuroblastoma. You and a little boy named Benny Petz of Tucson are their inspiration. Tim is looking for some volunteers to help staff the stand. Visit their website for further information about the event and ways in which others can help staff the lemonade stand helping to find a cure one cup at a time:

Pump it Up for Noah!! That was the flyer we received from Alexis’ mom Toni advertising a fundraiser for you and your family at Pump It Up. Do you remember your 4th Birthday there? Good times, good times. Another great man once said, “I am here to pump you up.” Well okay maybe not the greatest of men said that. It’s alright some day you can give me a hard time that he was my governor. You will soon learn Californians are crazy and our “Governator “is the leader of the pack. When I first met your dad I thought he looked like Arnold then I got to know him and realized he is more of the Don Juan. I was wondering when he was going to put that Spanish major to good use? After reading yesterday’s journal entry, I think we can now call him your mom’s Latin lover.

Besides being proud of your tireless efforts to try to eat or drink different things, your doctor has been so proud that you have kept yourself out of the hospital. Today and tomorrow are your lowest days for your immune system and we aren’t out of the woods yet. We still have to fear a fever that we can’t regulate with Tylenol can put you back in the hospital before your next scheduled hospital visit for another round of therapy. Your mom and I decided we liked to call it therapy for short instead of chemo. Speaking of Tylenol, can you believe I heard from the Foster family at your school whose dad works for the distributor for Tylenol? They wanted to send you some special medicine your way? Speaking of special medicine, do you think they could make you some orange flavored Tylenol? It seems to be the only flavor you will tolerate. I am amazed at the creative and thoughtful ways people are trying to help you and your family. At least some people are keeping their cool. Yesterday when I picked up yet one of your other medicines at Ostco...(We had to change from Walgreens to Ostco because they didn't flavor. Boy are they sorry now. They just lost a lot of business.) Anyhow back to yesterday, I almost ripped the lady's head off at Ostco when she said she couldn't flavor lidocaine. Maybe I am getting too sassy with my requests. (My therapy is this journal and because it had been a few days since I had written you, it was easier for me to blow my gasket.)

Because your sister is 2 and is one of those kids that probably pees in the kiddie pool, we thought it would be best to keep her and her dirty paws away from you for a few days longer. She will probably return home from her grandparents Ron's and Georgia's on Friday eager and happy to see us all. I hear she has been asking to go to the mall. That’s my girl; born to shop. I am glad to have a girl in the family to join the fun. I am convinced Jamie and I will end up with 3 more little cousin boys to look up to you. Not that I have anything against boys; we used to make do with Uncle Kevin and dress him up like a girl when he was about your age. Good thing we have Sarah so we can play Bionicles with you instead of dress-up.

Okay kiddo, tomorrow is another day and I can’t wait for what funny things you will say for me to add to my next journal entry. You just took to your bed. Sweet dreams. Dream of driving cars like you did with your friend Barrett. I remember how proud you were to tell me about your driving abilities. Hopefully your skills later in life will be better than that of your Uncle Jamie’s.


March 16, 2005 | Permalink | Comments (0)

March 15, 2005

To our family, friends (old and new) and loved ones

Lara and I wanted to take a breath between reading cards, crying, opening gifts, laughing, giving meds, driving to the Dr./hospital, etc. to extend our upmost gratitude for the overwelming support, love and prayer that we all have received over the past arduous weeks. We are floored to see the number of hits that the website has received to date (many thanks auntie and Kathy Nelson) and we're completely blown away by the community and network that we are blessed to be a part of - truly second to none.

We are anxious to speak with everyone individually, but bare with us while longer as we endure our first bottom out. Before long, Noah and the team will be on the upswing expect our call with the good news.

Noah - you never seize to amaze me with your soldier-like character to fight this battle.  Nothing makes your dad more proud.

Lara - I couldn't imagine going through this with anyone else.  You are the rock upon which I stand!  Te amo-

Love to all~

March 15, 2005 | Permalink | Comments (4)

March 13, 2005

Phoenix Children's Hospital

Yesterday was a busy day for everyone and today for that matter. Yesterday, you started out the morning with a visit from your nurse Paula. I hear she will be stopping by every day to check up on you. She did a weekly cleaning of your tubies and showed your mom how to play nurse as well.

All day long we were all trying to feed you anything from Mac N Cheese to Cocoa Krispies. I bet we were annoying. You must have been offered food more than 100 times. Speaking of counting to 100… Grandma Georgia told us a cute story at dinner last night, about when they took you and cousin Hannah to see Lion King at the theater and you all had to stop at a railroad crossing. To pass time you all started to count the railroad cars and when you reached the number 90, you exclaimed, “I can’t take it anymore.” I think you were talking about waiting for the train to go by. Boy do you talk like your mom or dad. It reminded us all of when your mom says, “Calgon take me away.”

Grandma Georgia, Grandpa Ron and Uncle Scott came over with some St. Patrick’s Day Cheer: corned beef, cabbage and marble cake. Again we were trying to feed you more and more so that you wouldn’t have to return back to the hospital. Earlier in the day, you got that infamous look and all that hard work of eating and swallowing came all back up. Your dad just returned back from yet again another trip to Walgreen’s with some more medicine. Hopefully one of them will help you with your nausea. Earlier in the morning Grandma Kathy went to Walgreen’s to buy some Chloraseptic spray and mouth wash.

Speaking of mouth wash I know you know how to use Scope, because on my last visit back in late January I had brought my own mouthwash and had used it in your bathroom. A good ½ hour had passed and you went into the bathroom and said, “mouthwash, I smell mouthwash.” You had a nose like Maggie sniffing for some treats. You recognized the smell and wanted to use some of my mouthwash. You crack me up kid. Although you were only 4 and it says keep out of the reach of children on the bottle, I figured you are a quick learner and could get the concept of gargling and not to swallow Come to think of it, I think Uncle Jamie had already let you give a try. That Uncle Jamie, he thinks you are ready for about almost everything. That is because you are wise beyond your years. Those gargling skills will be put to good use now so you can battle the thrush, a yeast infection that has developed in your mouth.

Now it all makes sense. The only thing that does not hurt when you swallow is milk. Forget the Sprite or Gatorade. The focus is now on Carnation Instant Breakfast. Your mom’s goal she just stated is to have us get you to drink 3 ounces every hour to keep you hydrated. That is going to be tough during times like right now when you have been sleeping for the past 2 hours. I told her sleep is good because I think you were exhausted yesterday from not getting anything in but cat naps. As your dad has stated several times, these past few days you are down in the trough like a horse and hopefully will be starting to feel better again real soon. (Unfortunately, that will be just in time for yet another round of chemo.)

During one of the three times to Walgreen’s today before lunch, your dad bought yet another type of thermometer. The ear scan is not accurate enough and the underarm method was too much to ask of you amongst the many other picking and probing we all have been doing to you. We are all fearing the fever that will put you back again in the hospital. Your sister Sarah woke up last night around 11 pm with a fever screaming. Grandma Kathy rushed into your sister saying, “I threw up Grandma.” Your dad had her in the car so fast it would make your head spin. Sarah is sick with the flu and we just learned that she was exposed to Strep throat. Perhaps she will be spending at least a few days at Grandma Georgia’s and Grandpa Ron’s house, because we can not expose you to her when she is sick.

Well you just woke up from your nap with a 101.5 temperature based on the temporal scanner thermometer. You had been given a narcotic to help battle the pain and perhaps that helped you get some sleep in as well. Dad just got off the phone with Dr. Cohen your oncologist to notify him of your temperature. He said to give you Tylenol which should reduce your fever and to call him back in an hour to let him know if Tylenol did the trick. You said you wanted to try the Tylenol liquid, but then you got the look. Now we are trying to give you some chewable tablets and telling you that you have to get your fever down or you will be back in the hospital again.

Your mom was just sitting next to me paying bills and your dad suggested that we all go outside for some fresh air since all was going well. Perhaps a bike ride? We were all looking for a little bit of normalcy around here, but in an instant we are reminded of our not so normal lives.

Someone just mentioned that it smells like a hospital in here. Your mom, Grandma Kathy and I have all separately wiped down every hard surface without each other knowing it. Grandma when Sarah woke up sick, I when I woke up this morning and your mom when she woke up this morning. Your mom will correct me and say that this place is much cleaner than the hospital. The dirty mop that was pushed in the hospital a few times a day was probably simply pushing the germs from one patient to the next.

As for something normal, Sean had his first experience today with Rice Cereal. It was a success. He took a liking to it just like you did when you are a baby. That is a good thing because the commercial is lying. “California happy cows don’t make healthy cheese.” Auntie is not a happy cow. That reminds me how embarrassed I was that I didn’t lock the door while I was using my breast pump and you popped in as your usual self with a question or statement. You said, “How do your moles do that?” “Can mine do that?” To think then I thought that was a difficult question to answer at the time. I simply told you I was making milk for baby Sean, sort of like cows make milk for you to drink. I didn’t even address the issue that milk does not come from moles. The real difficult question none of us ever thought we would have to answer is when you ask us “Why me?” “Why am I sick with cancer?” It seems like your mom has already a handle on the situation though. I heard her saying this morning that “it is NOT fair that you have to take all this medicine.” Your dad’s patience too is remarkable. His tidy house hasn’t been too tidy lately and his new blue chair isn’t so nice and new or blue for that matter. You have seemed to take a liking to that blue chair and have dirtied it up quite a bit. That is ok though. It is to be expected. You are a very sick kid right now. I don’t quite have the patience your parents have. Your parents have always done what is best for you. Do you know your mom nursed you for almost a year? Baby Sean may be weaned by your next journal entry. Did I say that? I am sorry there is just a lot of nervous energy around here.

As for how we are all dealing? Well, Uncle Jamie has been taste testing everything everyone has sent you to eat. I too for that matter. Remember to tell people that I already had baby Sean and I am not expecting a baby nor am I out here in Arizona getting my tummy tucked. I know it is going to be difficult for you not to be able to swim since you have your tubies in, but not for you to worry. You won’t be seeing your Auntie throwing on a bathing suit and doing a few laps any time soon. I know, I know for you not to swim is like a fish out of water. I am not trying to down play the situation.

Let’s talk more milk. Good thing for those cows, happy or not, because it seems that all you want is milk and for the most part it feels ok on the way down. Not too hard to swallow and maybe even coats your stomach. Lots of food talk and bathroom talk going on around here, but that is our reality. Dad is onto the caramel corn and Grandma Kathy otherwise known as the “Queen of the laundry” just told me that I need to get off the computer and get my maid cap on. She told me not to let the laundry accumulate for more than a day or I will be sorry because you will be looking for one of your favorite boxers or one of your favorite t-shirts.

Your mom is packing bags in case your fever does not go down and you all have to return to the hospital. On that note I will quickly upload this to the website so that your well wishers can send good vibes our way.

PS I will upload some before and after pictures of your old hair and your new shaved head for others to enjoy. We took that opportunity last night when you had enough energy to have your head shaved and to be honest we think you look cute with your new look.

Good bye for now.

March 13, 2005 | Permalink | Comments (0)

March 11, 2005

Going Home

Noah Nelson:

Well we arrived here safely. Only 1 soda, 1 coffee, a package of Hostess donuts and 12 hours later, we rolled into town mid-morning to hear that you were coming home. We unpacked the car and I took a nap so I could wake up to your arrival. I couldn’t think of a better way to wake up!

You arrived home wearing a Spiderman t-shirt and Spiderman socks pulled up to your knees that you told me you received from the Hu family. I have never seen you keep so many clothes on. And socks? Those must be some pretty special socks! You woke up ready to show Sarah all the Dora gifts she has received from all your friends at la Casa. Santa’s sleigh was delivered on Thursday to the hospital, but it was not until today that you had enough strength to see all of what was delivered by your elf friends. Uncle Jamie just helped you put together a Spidey toy from school. Yet off to more gifts. Good thing your mom was able to convince you to take your Tylenol so you would feel well enough to get out of bed after your nap. There was a huge box that the mailman delivered addressed to the Nelson Family from your Grandma Kathy’s work all the way from California. They even put in there a Game Boy Advance with a Yu Gi Oh game, of course. Boy Noah, it is like Christmas every minute here. Everyone is doing whatever they can to take your pain away. Grown-ups know kids like presents, and so whenever they hear a special boy like you is sick, they send you gifts and gifts. If only it were that easy to take your sickness away.

Shortly thereafter, a cooler of medicine arrived as a special delivery. I never thought we would be teaching you ABCs, by having you learn another letter because it starts with the name of your medicine. I would prefer you to learn your letters from the ABC Bingo that Mrs. Armstrong sent you. Auntie might have to pull out her labelmaker and label all the medicine, to keep us organized. Don’t tell your mom, but I packed my labelmaker. I know your mom has a labelmaker too, but I wasn’t convinced we would be able to find it. In times like this I like to get out all my nervous energy and label like a librarian with the Duey Decimal system. Do you know what the Duey Decimal system is or is it all about internet research these days? That back room where Sean and I will be staying is haunted with babystuff. You can’t believe what I was able to fit into my car. I couldn’t even see Sean or Uncle Jamie in my rear view mirror while driving, but I assume they were there the whole time, because they arrived here with me anxious to see you. The Ghostbusters will have to pay a visit to the room later tonight so it won’t be completely haunted with all Sean’s baby junk and give the room as Grandma Kathy would say a “lick and a promise.” You probably don’t know who the Ghostbusters are, but your mom used to watch that movie with Uncle Kevin and I.

Back to the library and the duey decimals, I think you have your own personal library right here at home from all the books people have sent you to read. Maybe some of those books too can go back to the playroom at the hospital for others to enjoy on your behalf. Right now, your dad is on the phone with a case Manager from Cigna, yet another resource to get you the best care. He just got back from Walgreens with yet again, more medicine and stocked with hand sanitizer. Remember if we are not washing our hands, we are to be using hand sanitizer to keep those BAD germs away!

Uncle Scott called to say that he has hair clippers in hand ready for a buzz cut. Rumor has it that even your dog Maggie will be getting a shave in young honor. KK (Kerrie) will be picking Maggie up to take her to the Groomer’s tomorrow. Getting rid of some dog hair is always a good thing. Lots of germs she can get trapped up in her hair. Now you are onto wearing your TJ Mutant Ninja turtle shirt from your friend Caden and relaxing on the couch with Uncle Jamie and watching a Spiderman video from your friend William.

You weren’t happy to just hear that a nurse tomorrow will be coming from Critical Care to come and clean out your Bionicle tubbies. Hopefully the nurse will be real nice like all the nice people at Phoenix Children’s Hospital. We all need to do whatever it takes to get you all better. Since it really isn’t Christmas in March, your mom suggested that you take some of your gifts to refill the surprise box at the hospital and continue in your generous spirit. There are so many other sick kids like you that don’t quite have the same support of the community. They need a smile sent their way too.

I couldn’t but notice your lips. They look like you got them chapped skiing, but unfortunately it is more likely from the chemo. Speaking of skiing, I heard that just a few weeks ago you went up to your Grandma Georgia and Grandpa Ron’s place in Flagstaff to ski for the very first time. I bet you were quite the ski bunny.

I really have enjoyed reading all your messages on your guestbook. There is even one there from your cousin Jessica from Wisconsin reminding you of what fun she had with you out in Lake Geneva. Again, more people cheering you on all the way from Wisconsin. You have been to Wisconsin; tell me do they really wear cheeseheads out there?

Noah aside from your family at la casa, Noah you sure have a large family all thinking about you. Your Grandpa Tim had 10 brothers and sisters. Do you think I can convince Uncle Jamie to have a dozen kids? And then your Grandma Georgia has her sisters like Aunt Judy. Her name is kind of like St. Jude. Many people are telling me they are praying to Saint Jude the healer to bring you comfort. I haven’t seen Aunt Jude in awhile. We missed each other on our visits to you this year and more importantly I missed her tuna noodle casserole. Maybe if I stick around long enough she will come out for a visit and we can eat some together. And then of course your grandma’s sister Aunt Bobby Kent. Wait a second, are you related to Clark Kent otherwise known as Super Man? Who knows? Maybe so. You sure could use more than kryptonite right now.

Well dude that is enough for now. Grandma Kathy is putting the food out Francine brought for us to eat, and you just told me that you are going to try some of KK’s lasagna. Noah I am glad that you have allowed us to come together and be together as you would say “one big happy family.” Let’s go eat outside before the sun goes down.

March 11, 2005 | Permalink | Comments (0)

March 10, 2005

Roller Coaster Day

Hey Little Man:

This has to be short sweet, because the car is packed and we are heading out. We will be there hopefully first thing in the morning.

I just spoke with your mom and I was wondering why I hadn't heard from her all day. Sounds like it was a tough day for her. She said she had lots of ups and downs and felt like she had been on a roller coaster. Have you ever been on a roller coaster? Do you ride one when you went to Disneyland or were you still too short? I will say hello to Disneyland for you on our drive and let them know that I would love to take you there to ride the Matterhorn whenever you feel up to it.

Anyhow your mom said that you have learned there are lots of bones in your face and that means lots of pain for you. You have learned you have knees of an 85 year old not a 4 year old. You have learned that nothing taste good because of the sores in your mouth from the chemo. Your mom said you even threw up. The good news is it seemed that your mom was more upset by your barf than you.

Sounds like they are doing everything in their power to get you home tomoorrow. Your mom said that they will probably blow up the air mattress and put you in your mom and dad's room. I have slept on that air mattress, and it is not the most comfortable; and I didn't even have aching bones.

Don't worry kid your mom is a little preoccupied, I will come up with a better bed for you once I get there. I also heard your grandparents are trying to get together a little welcome home party for you with your immediate family attending. I heard all your cousins will be there and all your aunts and uncles besides Uncle Brian and Kevin and your grandparents will be there. I wonder what is going to be on the menu? Ice cream? That is soft right?

OK dude I will be thinking about you lots on my drive and I will wave to all your favorite places you have visited in California on my way. Sweet dreams. Hopefully Uncle Jamie will be able to visit you at the hospital if you are unable to come home. I heard you were excited to joke around with him. Until then Sweet dreams. Dream about the time you went to Disneyland with grandma Kathy and Uncle Brian and your mom and your sister. I am sure Buzz Light Year is sending well wishes to you from infinity and beyond.


March 10, 2005 | Permalink | Comments (0)

Noah Trouble Nelson

Noah Trouble Nelson:

That is what Uncle Jamie likes to call you sometimes. He doesn’t really think you are trouble. He just thinks it is funny when you say “I am not trouble” or “I am not filthy.” It is cute and grown-ups like it when kids are cute. Speaking of cute, I think that Alexis thinks your are a cutie. I know you are my nephew and I think you look like a “Stud Muffin” when you slick your hair with your dad’s gel like in your picture on your home page, but If I am not mistaken I wouldn’t be surprised if more love letters are on their way from girls. I don’t think you will have any trouble getting a Valentine next year.

Your mom called me on her cell phone telling me she was on her way home from the hospital to go get some sleep and see Sarah while you stayed and cuddled with dad in your hospital bed tonight. Boy did she sound tired. I could barely hear her since she hardly had a voice left in her. It sounds like she has been your personal nurse. I can’t think of a better person to be my nurse. I wonder if I could convince her to help me take a shower and hold me? Just kidding. She is all yours man. She held me lots when I was little since she was 8 years old when I was born. Your mom and dad sure do love you and they are doing everything they can to make sure you get the best care possible. They are walking the walk and talking the talk at Phoenix Children’s Hospital. They know what medicine you need when and what medicine does what. Maybe your mom can become a pharmacist on the side? Think that is a good idea? No, if your mom has spare time she needs to go on a date with your dad. Speaking of a little excitement, I was pleased to hear that for the first time since you got sick you were eager to eat something like your mom’s bag of Cheetos she probably had bought in the cafeteria. It is a hospital, you would think the cafeteria would be open past 7 pm and sell healthier food than something neon orange. What people in the hospital don’t want healthy food and don’t get hungry past 7? I was in shock when I went to the hospital for my first and only time when I had baby Sean. All the food in the hospital I think was made to make you sick so that you have to stay in the hospital longer or so that your guests than are admitted to the hospital and become your roommates.

Speaking of roommates. I have heard you have shared the room with many different special boys like you. First there was Joshua, the teenage boy who is suffering from sickle cell anemia and had lost his hands to the disease. Or then there was the little Hispanic boy. I can’t remember his name, but he had to have surgery on his broken boys. I heard that you and your mom have been very nice to your roommates. Talking to them lots, because they didn’t have anyone really to talk to. I also heard that you gave your roommates some toys that you received as gifts since no one brought them any gifts or toys of their own. That is what I like the best about you kid. Even in the toughest of times you are always willing to cheer someone else up or help someone else out. You always offer whatever you are eating or drinking to me. Since I am not a huge fan of backwash, I usually say no, but nonetheless your generosity is abundant. What I mean is you have a HUGE heart.

I also hear that they can’t pull a fast one on you. Even when you are feeling sick you are fully aware of the world around you. Today during your scan procedure the doctors gave you medicine to put you totally asleep. They all thought you were still asleep when the nurses were telling your mom that if you are willing to eat they should start you off on soft foods like applesauce. The next thing they knew you popped up from laying down and said burritos are soft especially bean burritos. Can I have a burrito? They said they may be soft to you, but we were thinking soft in the sense that they would be easy on your digestion. They said if you keep applesauce down, you can have a burrito, Cheetos whatever you want.

It’s late and I too need my sleep like your mom, because pretty soon I will be out in Arizona and I will want to update your website, spend time with you amongst many other things that will need to be done. Uncle Jamie is holding baby Sean and they are both asleep beside me. I remember we all held you lots to get you to sleep when you were a baby. You always wanted to be part of the excitement and there was no time for sleep. You even would go to great lengths and hold your eyelids open with your fingers and say I am not tired, just to be able to join in on the fun. We will have fun in the future, but for now get your rest.

Sweet dreams. Dream of Maggie giving you a HUGE wet kiss when you get home. I will have to remember how much you love your dog Maggie when she steals my socks or chews all of Sean’s toys.


March 10, 2005 | Permalink | Comments (0)