History

Monday, February 13, 2006 11:21 AM CST

Just heard from Laura - and Scott's Hickman removal is over and done with. Everything went well - took a matter of minutes. Scotty has a Bugs Bunny Band-Aid on his chest! Cute. Didn't like his IV line in his hand.

MIBG and CT scan came back clear - along with the news that his kidney function is much better than previously thought! Wow! What a long journey - with a great result.

Love you, Scotty Boy!

Friday, February 10, 2006 6:49 AM CST

Drum roll, please!!!!! Clean, clear and cute - that's what Scott is!!!!!!!!!!!!!!!!! (Have you seen enough exclamation points yet?) What wonderful news. I've been waiting for this for a whole year! The bone marrow will travel to LA for a second look with more testing, but everything looks great. Scott had his MIBG scan yesterday afternoon.

In honor to celebrate Scott's recovery, we're going to have an Olympic Opening Ceremony party tonight (go U.S.A.) - don't forget to wear your red, white, and blue (and orange for Scott). We're going to have spaghetti in honor of our friends in Italy - one of Scott's favorite meals.

Surgery is planned for Monday for removal of his Hickman. Please keep your thoughts and prayers with him while undergoing surgery - that the surgeons will have steady hands, the nurses kind and compassionate hearts, and for Scott for quick healing!

Scott will celebrate his 3rd birthday on February 24th. Lots of great things happening for a wonderful boy. Watch for updated "hairy" pictures. He looks so different even from Christmas. You'll be surprised.

“A journey is best measured in friends rather than miles.” - Tim Cahill

Friday, February 10, 2006 6:49 AM CST

Drum roll, please!!!!! Clean, clear and cute - that's what Scott is!!!!!!!!!!!!!!!!! (Have you seen enough exclamation points yet?) What wonderful news. I've been waiting for this for a whole year! The bone marrow will travel to LA for a second look with more testing, but everything looks great. Scott had his MIBG scan yesterday afternoon.

In honor to celebrate Scott's recovery, we're going to have an Olympic Opening Ceremony party tonight - don't forget to wear your red, white, and blue (and orange for Scott). We're going to have spaghetti in honor of our friends in Italy - one of Scott's favorite meals.

Surgery is planned for Monday for removal of his Hickman. Please keep your thoughts and prayers with him while undergoing surgery - that the surgeons will have steady hands, the nurses kind and compassionate hearts, and for Scott for quick healing!

Scott will celebrate his 3rd birthday on February 24th. Lots of great things happening for a wonderful boy. Watch for updated "hairy" pictures. He looks so different even from Christmas. You'll be surprised.

“A journey is best measured in friends rather than miles.” - Tim Cahill

Tuesday, February 7, 2006 2:41 PM CST

Scott and Laura just got home about a half hour ago from Scott having his bone scan and bone marrow biopsy. He also had lots of blood drawn for labs to send to L.A. Scott did well with the bone scan and bone marrow and came through okay. Crabby when he woke him. Scott was chowing down some food when Laura called. They will know the results sometime tomorrow.

Thursday, January 26, 2006 7:25 AM CST

Scott is FINALLY done with his Accutane. It's been a long, arduous process, but finally done. Next week he will have a full set of scans. Plans have been set for his Hickman to be taken out, if all goes well, the middle of February.

Scotty came over to visit me last night. His speech is really coming along - putting together three word sentences. He loves anything to do with mechanics. We were in the basement, and as the furnace and humidifier came on, he wanted to see the water run and the "blue" flame. He's my favorite. I haven't seen him for a while because I have been busy and out of town - and he just makes my heart melt. He gives me the warmest and most sincere hugs ever. And he always says to me when I tell him I love you, he'll respond back "You" - which is I love you! That's the Laura side of the family.

Now, onto the Greg side of the family. Last week on Thursday Laura and I took Scotty out for lunch. As Laura and I were in the garage getting ready to go, Scott opens the door, "Poo-poo out. Poo-poo out." Okay. Time to change his diaper - yes, he's getting ready for potting training. However, we open the door and - guess what? He's decided to put his hands down inside his diaper and has it all over his hands. Yikes! Fortunately he told us as soon as it happened and it was a small incident to clean up - and had us laughing all day. He's a feisty one! That's why we all love him.

All family kidding aside (I know I can tease you, Greg!), we're all lucky to have him as part of our lives. And I'm fortunate to have the Johnsons as our neighbors and "bestest" friends. We're thinking we're together so much that we should just sell one of our houses and move in together. Gee, wouldn't that be fun? Okay. Maybe the husbands can have one house and us girls and kids will have the other house!

"Spending ten minutes with a friend outweighs spending hours with a stranger." - Anonymous

Wednesday, December 21, 2005 3:54 AM CST

It has been one year ago that Laura took Scotty into the doctor for a simple little issue - constipation. I look back on the year in review and think what an amazing little boy Scotty is. He and his family has had to endure so much, but yet has been such a great trooper and an inspiration to me and my family - along with an inspiration to a lot of people. We had a mini celebration last night - low key. We celebrated by having Scotty run from the hallway into the living room in a pile of blankets and pillows. The saying is true - give him a box and he's happy. He's been over at my house playing with the packaging boxes. He'll stack them up and then knock them down and start all over again.

He is completing his 5th round of Accutane on Thursday and has one more to go. Then he will have a full set of scans again. Soon thereafter they're hoping to get his Hickman out so that when they go on spring break he will be able to swim.

Scotty, we all wish you many more years of cancer-free life! You are an inspiration to me.

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly." - Buddha

Wednesday, November 23, 2005 6:18 AM CST

The Johnson Family would like to wish you and your family a Happy Thanksgiving.

"For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends." ~ Ralph Waldo Emerson

Saturday, November 19, 2005 9:20 AM CST

Scotty and I spent yesterday afternoon together. We went to pick Kathryn up from school. Then went to Caribou and had a snack - lemon poppy seed bread and milk. I cut up a few pieces of the bread for him - and no, he pointed to the "frosting" pieces. Smart guy, isn't he? He's after my own sweet tooth. Then we went and watched Kathryn skate at the rink. When we walked into the rink he saw Kathryn's friend Torie and said "Orie, Orie." He watched her skate and she fell and he said, "Uh-oh." He was also intent on watching the pairs skaters. He loves being around the skaters. Afterwards I took him home. He missed his mommy and Ally.

"Adversity and perseverance and all these things can shape you. They can give you a value and a self-esteem that is priceless." - Scott Hamilton

Tuesday, November 15, 2005 7:11 PM CST

Straight from Greg's mouth (with Nancy typing): Scott had a full set of scans last week. It has been three months since his last scans. Everything was clear as far as cancer. He does have one spot on his kidney, and they're going to wait to compare it to the next set of scans to see if it will repair itself. They think it is minimal damage to the kidney and the kidney is not getting enough blood flow to it. Scott is currently on his fourth round of Accutane and has two more rounds to go. Scott continues to grow and mature in his own little way. He's a strong-willed boy when it comes to his sister. He stands his ground, but yet loves her with his whole heart. His speech is progressing and has been talking more and more. His bed is supposed to arrive on Friday.

Ally is doing great in school. We had a positive conference this fall with her teacher. Ally continues to swim and skate and play with her friends. She loves school - and she just lost one of her upper front teeth. The tooth fairy came to visit Ally.

All for now - Nancy promised she'd try to keep the website more up to date - otherwise I'm going to torch her computer.

Saturday, October 1, 2005 9:31 AM CDT

Great news - Scott's blood counts are recovering on his own. On Thursday they drew blood and found out that the counts increased on their own. Hopefully no more blood transfusions!

"The thing always happens that you really believe in; and the belief in a thing makes it happen." - Frank Loyd Wright

Sunday, September 25, 2005 6:29 AM CDT

Scott has been an active 2-year-old boy these past few weeks. Auntie Lea left last Thursday. Scott got to spend time with his cousins last week at Merrick's baptism. Everyone was in town for the event.

The big news is Scott has sat on his potty chair and gone potty - once for his dad and once for me! Hooray. He got up from his nap last Wednesday and I asked him if he had to go potty and so he sat on the chair and went. Yea! He's interested - and that's a good sign. And more news - Scott's hair is coming in and looking dark - like Laura's.

Scott's back on the Accutane treatment (Round 2). He has lots of mood swings. We've labeled his mood-swinging personality Rocky.

Platelets and blood are low but remaining steady. This week Scott has not had to get transfused. His platelets are in the low 20,000 range. He did fall off the couch and hit his head on the arm of the lazyboy and has a nice bruise in the middle of his forehead.

Ally has adjusted well to first grade and having fun. Her birthday is coming up and decisions are being made on where to have her b-day party.

Interested in giving blood - Memorial Blood Centers on 9/28/2005 will be at the Apple Valley Senior Center in Apple Valley from 1:00 PM - 6:00 PM. Located at 14601 Hayes Rd. Contact Molly Lindblad at (612) 871-3300 ext. 4429 for further information.

"Life is a great big canvas, and you should throw all the paint on it you can." -- Danny Kaye

Friday, September 9, 2005 6:56 AM CDT

Scott went to the clinic on Wednesday and had a complete CBC done. Everything is fine. He doesn't have an infection in his Hickman, but his skin is very sore and tender around the Hickman due to the Accutane. They are using a new bandage around the Hickman that will hopefully alleviate some of the soreness. The bandage will have to be changed more often. Now Scott's having an issue with loose stool. If it's not one thing, it's the next, huh? Accutane will start again on Wednesday. Accutane will start on Wednesday and Auntie Lea is coming to town to visit.

Check out the new photos -

"Smiles are wondrous things; you can give them out for eternity and always have one left for yourself." - Colleen, age 13 (from Quotes by Kids)

Tuesday, September 6, 2005 8:54 PM CDT

Happy School Day! Scotty saw Ally off on the bus today! I drove by on my way to the bank and came back just as the students were getting on the bus, and I think I saw some parents jumping up and down in joy. They were celebrating. Ally started 1st grade! Wow. Before we know it Scott will be starting kindergarten. Scott did have school today - his speech class. He goes twice a week for an hour at a time. Today he worked on his M sounds - money, moola, millionaire!

Scott had a transfusion of platelets on Saturday. He had what's called petechia - it's purplish/red spots containing blood that appears on the skin - caused by low platelets. The accutane is causing some dry skin and causing his Hickman to be quiet dry and may have something going on with it. Laura is going to make an appointment at the clinic tomorrow to get it checked out.

"Remember in elementary school you were told that in case of fire you have to line up quietly in a single file from smallest to tallest? What is the logic in that? What, do tall people burn slower?" - Warren Hutcherson

Thursday, September 1, 2005 4:49 PM CDT

Well, yes, no news is good news. Scott is doing great. His spark in his eyes never left, but it's really intesified and come to light! Scott and his family had a neighborhood party on Monday to celebrate Scott being cancer free and to also thank everyone for their support and concern during the past eight months. Tony and Rona came and celebrated by bringing a "jumper" - the toy where it's filled with air and everyone can get in and jump. The kids had a BALL!!! Everyone wore orange - Scott's favorite color. Everyone had fun. Scott and Ally and Laura had decorated the neighborhood with ribbons on trees and mailboxes and balloons.

No plans for the weekend. Scott got transfused with platelets on Monday, so it may be transfusion time over the weekend - all depends.

"Sometimes it's important to work for that pot of gold. But other times it's essential to take time off and to make sure that your most important decision in the day simply consists of choosing which color to slide down on the rainbow." ~Douglas Pagels, These Are the Gifts I'd Like to Give to You

Tuesday, August 23, 2005 11:46 AM CDT

Scott was in the clinic yesterday - received platelets and blood. It was a LONG day at the clinic. Arrived at 9 a.m. and didn't get home until 5:30 p.m. The Accutane is giving Scott insomnia as one of the side effects.

Scott went to PDQ (the little convenience store) this morning and got his favorite cookie and favorite gum. Ally is playing with the neighbor girls who just got back from vacation. She's so happy to see them. They're trying on Halloween costumes! Scott's amazed to see them all and thinks they're pretty silly.

Off of a website that has quotes from kids:
"I can remember what flavor of ice cream cone my grandmother and I shared at Disneyworld; but most of the time, I can't remember what day it is. I guess it depends on what you think is important." Katherine, age 13

Monday, August 22, 2005 6:21 AM CDT

Scott had a really good weekend with Laura. They went on walks and played at the park. Ally and Greg went to Ely.

Scott's doing great. He's been taking the Accutane and so far hasn't had a lot of side effects. We were gone for the weekend, and he was so happy to see us when we got back. He's such a cute little guy!

"I take nothing for granted. I now have only good days or great days." - Lance Armstrong

Tuesday, August 16, 2005 11:26 AM CDT

Day 68

Just an update to let everyone know that Laura took Scott to the clinic yesterday. They had forgotten to do an echocardiogram in order to be entered into the study, so they haven't found out yet if he is randomized. Today, hopefully. Scott received platelets yesterday. He's started again on GCSF to stimulate the production of white blood cells. If Scott is entered in the study he will start this Friday and will be in the hospital for two weeks.

Keep you posted -

Update - 5:09 p.m. Laura heard today around 1 p.m. that Scott was not randomized to the study. He will start Accutane ASAP. Feelings are bittersweet at this time. Glad to not have to be back in the hospital for two weeks every month but want to do EVERYTHING possible to make sure that Scott does not relapse.

"Doing your best means never stop trying." - Anonymous

Saturday, August 13, 2005 8:53 AM CDT

SCOTT IS CANCER-FREE!!!!!! Hooray. Scott was officially declared NED (no evidence of disease) yesterday. He's gone through his scans and the radiologist read them as no evidence of disease. What great news. Although it was a very stressful ride home from the hospital - Scott throwing up and Ally being a REALLY big sister and holding the chum bucket. She was crying and very scared. She was very brave for Laura. Scott went in the tub when they got home and Ally went across the street for love and hugs from neighbor Karen.

Although cancer-free, there's still a lot of treatment left and a lot still going on. Scott's still not feeling great and has bouts of pain and nausea. He still doesn't eat a lot. One minute he's happy and playing and the next he's not feeling so great. One thing he's been learning is animal sounds. We're working on the pig right now. He has down dog, cat, cow, tiger, horse. I'm trying to teach him what an alligator does too - chomping!

On Monday Laura will meet with Dr. Richards to find out if they're randomized into the study. Ally will meet with her new first grade teacher on Monday also. She's very excited to start school, and neighbor Rebecca and Ally will be in the same class.

"Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever." - Lance Armstrong

Sunday, August 7, 2005 8:24 PM CDT

Scott is looking great - his eyebrows are starting to come in, along with his eyelashes. He's so handsome - ALL the time. It was so good to see him! I haven't seen him for two whole weeks. His newest trick is to say, "Ta-da." He poses too when he does it. He also likes to make all kinds of animal sounds! He is my hero! He's SO cute.

He still has bouts of not feeling so good and seems to have a lot of heartburn or reflux from the radiation, which they were warned about. All in all, though, he's happy and smiling the majority of the time!

"There is only one happiness in life, to love and be loved." - George Sand

Wednesday, August 3, 2005 5:39 PM CDT

Scott's last day of radiation was today! Hooray! He had a final send-off with the folks in radiation. Little celebration.

Scott will be entered in the clinical study for immunotherapy. The computer will randomize whether he gets the immunotherapy or not. The purpose of the study is to compare two different treatments aimed at maintaining or improving patients' response to treatment. The study involves the use of an investigational biologic therapy, which are designed to bind to specific neuroblastoma cells.

Before he can be put into the study, he'll have scans and the whole workup and battery of tests - which hopefully he'll be deemed NED (no evidence of disease). On Tuesday he'll have a radiation injection, bone scan, and CT scan. On Thursday he'll have another injection for preparation for Friday. On Friday he'll have a MIBG scan and a bone marrow biopsy. He will be put under for all scans and biopsies.

If Scott is randomized to go on the clinical study, he will receive therapy on the 1st and 4th week of the month, along with the therapy of Accutane. If he is not randomized to go on the study he will start the Accutane therapy. Scott will be on a six-month treatment with 13-cis-retinoic acid (Accutane). It is a drug closely related to Vitamin A and has been shown to help stop the multiplication of neuroblastoma cells remaining after treatment. Scott will take the drug two times a day by mouth for 14 days and then off for 14 days. This 28-day cycle is repeated six times.

Although it's been a long and arduous eight months since diagnosis, the treatment still continues because they want to lick the cancer the first time around. We know you can do it, Scotty! You are one strong and courageous boy!

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all." - Dale Carnegie

Monday, August 1, 2005 8:40 PM CDT

Hello, everyone - Scott has been dealing and fighting a staph infection, although they're not sure of the site of the infection. He got a fever on Friday, which they discovered at radiation. On Saturday the home health nurse came out to administer antibiotics, which was a very fortunate thing, otherwise Scott would have had to have been admitted to the hospital. It's amazing how quickly things can change in a matter of hours. It reminds me, once again, that everyone needs to be vigilant about staying healthy when around Scott. It also reminds me of the seriousness that an infection can cause and the seriousness of everything that Scotty is still going through. Any infection to his body is a life-threatening illness. He was sick and threw up on Saturday. He wasn't feeling himself - very irritable. The only thing that he loved to do was watch Princess Diaries. It's his favorite movie right now. Laura has been a great caregiver over the weekend. She is required to administer his antibiotics through the IV every eight hours. That means she has to get up in the middle of the night to do so. It takes approximately two hours to administer. It was not a walk in the park over the weekend for Laura. Even though Laura is not trained as an RN, I consider her the best RN I've seen these past eight months. She is so kind and compassionate and caring towards Scott. Laura's dad was visiting last week and stayed an extra day over the weekend to help out, since Ally and Greg were in Ely.

Scott did have radiation today and had platelets and blood also. Laura and Greg also had a meeting today concerning immunotherapy and what the next treatment options are for Scott. He has two more days of radition. Then scans will follow - although not sure when yet.

"It doesn't matter what we're doing or where we're at - as long as we're all together as a family." - Anonymous

Tuesday, July 26, 2005 9:22 PM CDT

Well, you know what they say - no news is good news! Scott has been doing extremely well with radiation. This morning it took him a little longer than usual to wake up, but he did just fine. Tonight he was out in the yard running and racing, "Get ready, set, GO!" Everyone is doing great at the Johnson household. Ally is enjoying being at home and playing with her neighborhood friends. Scott hangs out outside when the weather permits. Tonight he was outside helping clean the "new boat." Still a week left of radiation. The schedule is pretty much the same. To the hospital by 7 a.m. (Abbott Northwestern). Rush Scott back over to the short stay unit through the tunnel to Children's, and at Children's he wakes up. Some days he receives platelets and blood. Other days he's home by 9 a.m. As for blood counts, yesterday's WBC was 4,000! Till later - I'm signing off from Utah - where Kathryn and I were able to celebrate Pioneer Days.

"Love What You Do. Do What You Love." - Wayne Dyer...Secrets to Manifesting Your Destiny

Monday, July 18, 2005 8:25 PM CDT

Day +39

Scott has been having his up and down days. Today was a great day because he was able to actually go OUTSIDE and do something. The weather has been so hot - and there have been air quality advisories so he hasn't been able to get out much.

Tomorrow Scott will start radiation. Hopefully everyone will get in the routine of what needs to be done for radiation and it will go smooth.

"There is only one time that is important—NOW!! It is the most important time because it is the only time that we have any power.” ~ Leo Tolstoy

Thursday, July 14, 2005 7:19 AM CDT

Scott's home again! Came home Tuesday night with his saline backpack. It's cute how Scott drags it around the house. He had a good day yesterday. The home health nurse came and drew blood. Had a nice nap and went for a walk last evening. He's really anxious and adamant about going "out....side," as he calls it. It's hard to keep him in, but our Minnesota weather is so hot and humid right now. Should find out if radiation will start next week.

"I do not think there is any other quality so essential to success of any kind as the quality of perseverance. It overcomes almost everything, even nature." - by John D. Rockefeller

Monday, July 11, 2005 8:57 PM CDT

If all goes as planned, Scott will be coming home tomorrow. Today was an okay day. They're getting everything squared away with him. Scott will come home and will be hooked up to saline solution at night. When he went into the hospital he was dehydrated (nobody told the docs about the salty margaritas he was drinking Friday night - whew!) He'll also have his cruise patch on the back of his ear, as well as Zofran to help the nausea.

Not much more to report! Scott's a trooper and hanging in there! Ally's enjoying the warmth up at Ely.

"Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as this is all there is." - Mary Anne Radmacher

Sunday, July 10, 2005 10:11 AM CDT

Well, guess what? Scott decided he wanted to go see his favorite nurse Deb yesterday. Scott's back in the hospital. He went in last night around 9:30 or so. All day Friday and Saturday morning and early afternoon was great. He had a nice welcome home party with silly string and the whole 9 yards. He was doing real well. Yesterday he took a nice tub. Got a nice lotion massage. Then around 3 p.m. he started vomiting. Unfortunately it didn't stop. He ended up vomiting some blood, so it was time to go back down to the hospital. His platelets are low, so he got a boost of platelets last evening. This morning he's getting some red blood cells. His white blood cells are doing great. They're thinking it's a reaction to coming off of the pain meds too fast, so they're going to come up with another plan of action today. He's resting comfortably now. Ally is on her way to Ely with cousins for the week. She'll be hanging out on Splash Island while the rest of us will be stuck down in the concrete city!

"Earth and sky, woods and fields, lakes and rivers, the mountain and the sea, are excellent schoolmasters, and teach some of us more than we can ever learn from books." - John Lubbock

Friday, July 8, 2005 6:02 AM CDT

SCOTT IS COMING HOME TONIGHT! SCOTT IS COMING HOME TONIGHT!

(Hey, Scott's neighbors and everyone on Dulcimer Way - time to turn on your outside lights for Scott tonight so when he comes home he'll be able to find our neighborhood!)

Yes, I'm shouting it from the treetops and the rooftops in Apple Valley. If everything goes as planned today, he will be back in his own bed tonight! Although home, he is still in a very immune suppressed state and will need to stay in the house and lay low with limited exposure to all of us germ-producing people! He's still eating limited food yet.

Radiation is scheduled to start on Monday, but since his counts are not high enough, that will be pushed back. Scott will have 12 sessions of radiation. Then after radiation he will be put on the last leg of the treatment plan, a six-month treatment plan with cis-retinoic acid (a/k/a Accutane). Cis-retinoic acid has been shown to help stop the multiplication of neuroblastoma cells remaining after treatment. Scott will take the drug 2 times a day by mouth for 14 days on and then off for 14 days. The 28-day cycle is repeated 6 times. Although it seems like the "easy" part of the treatment, there are side effects of taking the drug - mainly nausea and vomiting, dry skin and lips, sore and swollen lips. But....Scott is strong!

Yesterday Scott went for some walks and got his legs much stronger. He doesn't need the assistance of Laura's hand anymore to walk, but still gets tired very easily. He made the rounds in the hospital, stopping to flatter all the nurses and bring a smile to their faces. He can make anyone smile.

"Home is where the heart is." - Anonymous

Thursday, July 7, 2005 7:10 AM CDT

Day 28

Scott had a really busy day yesterday. He started the day off with speech therapy around 11 a.m. - which went well. He's on track for his age group. He's making all the appropriate sounds for his age. He was quite vocal the other day when his pumps started beeping and another nurse came in to take care of it instead of Deb, his favorite nurse. He was kind of chewing her out! Also had some physical therapy yesterday. Lots of play time. Scott called to inform me that Phantom is no longer the movie of the month. He's actually scared of it now. We're thinking the drugs back then helped get over the "scary" parts. He's thinking perhaps Chitty, Chitty or Grease will be revived again. I told him Grease would be more appropriate right now for the summer. He said he'll decide!

"Summer afternoon - Summer afternoon... the two most beautiful words in the English language." - Henry James

Tuesday, July 5, 2005 10:29 PM CDT

Day 26

Scott had another great day today. Scott watched fireworks last night with Laura out the east window of the hospital. Scott walked a little bit last night. He was happy to be walking around.

Today Scott went over to Abbott for his radiation consultation. The radiologists met with him and marked on his body his correct alignment for placing. He was such a good boy that he got lots of stickers. He walked a little bit today also.

This afternoon he went down for a hearing test. His hearing has remained about the same. There is still a high frequency that he is unable to hear, but the normal range of decibels he does fine with. They'll check the hearing in approximately a month. May or may not require hearing aids after treatment. Sounds like s, k, sh may be muffled without hearing aids. The woman who did the test was excellent with Scott.

Scott had some "real" food today. He had a couple of Dorito chips, a couple pretzels, a couple of French fries, and a tiny bit of Chicken McNuggets. He had a picnic tonight with his new blanket - Aunt Jane made him a truck quilt! He keeps some of the food down, but not all. He's getting much, much closer to coming home!

"Love begins by taking care of the closest ones - the ones at home." - Mother Teresa

Monday, July 4, 2005 9:13 PM CDT

Day 25

Happy 4th of July from Children's Hospital! Here's for celebrating white blood cells! Scott has 800 WHITE BLOOD CELLS! Hooray. Scott's favorite nurse Deb is back at the hospital. He was SO happy to see her. She can get Scott to do things that Greg or Laura can't get him to do.

Greg got to take Scott for an hour and a half wagon ride today. Scott was so tired thereafter! He took a nice afternoon nap (and so did Dad)!

Ally and Laura spent the weekend hanging out and doing some "girl" things and getting the house ready for when Scott comes home. Ally and Laura went to the local 4th of July parade. Fireworks tonight on Dulcimer Way!

"Freedom is nothing else but a chance to be better." - Albert Camus

Thursday, June 30, 2005 7:39 PM CDT

Day 21

Scott's Counts:

White Blood Cells 400

Scott's doing great - he played today on his mat! Hooray. He's got sea legs just because he hasn't been on his feet for a while. He was smiling again and more interested in things!

Happy 4th of July, Scott! May your week be filled with bright lights from the fireworks!

Monday, June 27, 2005 8:00 PM CDT

Day 18

Best news of all - Scotty smiled today! Hooray! The first smile! The bouncy ball is what made him smile. Watching the bouncy ball hit the ceiling. Then he even threw the ball - and kind of giggled! Hooray! I'm SO happy.

White Blood Cells 200
Hemoglobin 10
Platelets 14,000
Neutrophils 80 percent
Monocytes 14 percent
ANC 168

Hugs

No moving parts, no batteries.
No monthly payments and no fees;
Inflation proof, non-taxable,
In fact, it's quite relaxable;
It can't be stolen, won't pollute,
One size fits all, do not dilute.
It uses little energy,
But yields results enormously.
Relieves your tension and your stress,
Invigorate your happiness;
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And elevates your self esteem!
Your circulation it corrects
Without unpleasant side effects
It is, I think, the perfect drug:
May I prescribe, my friend,... the hug!
and, of course, fully returnable!

Sunday, June 26, 2005 4:25 PM CDT

Day +17

Scott's Counts:

White Blood Cells 300
ANC 247

Scott's dealing with a lot of medication issues right now. They're trying to find a happy medium of pain meds and trying to ween him off of them in order to go home. Friday night/Saturday morning he decided to pull out his NJ feeding tube. Did it all by himself in the middle of the night - Laura didn't even hear him. He's a fighter, that's for sure.

Marian Wright Edelman: "You're not obligated to win. You're obligated to keep trying to do the best you can every day."

Thursday, June 23, 2005 12:18 AM CDT

Just had to let everyone know - the white blood cells - 200!!!!! Will update later - when I have more time!

Tuesday, June 21, 2005 8:04 PM CDT

Day +12

Scott's Counts:

White Blood Cells 100 (up) (normal 5,000)
Hemoglobin 10.4 (up) (normal 11.5)
Platelets 19,000 (down) (normal 160,000)
ANC 79 (up)
Neutrophils 58 percent (even)

Scott's hanging in there. Blood oxygen levels are staying around 98 to 99 percent. Heart rate is around 110 to 140. Things are slowly progressing and getting better every day. He LOVES his neon orange sippy cup. It's his security blanket. When it's not in his hands, he's definitely looking for it! Every day he's getting much better!

"Children have more need of models, than of critics." -Joseph Joubert

Monday, June 20, 2005 9:00 PM CDT

Day 11

Can we say neutrophils? Oh, yes, we can! Hooray for neutrophils and philberts (oh, that's filberts) and Dr. Phil and Philadelphia and anything that has phil in it! Scott's neutrophils have come up to 58 percent. That's a great sign. The monocytes rise first and then the neutrophils rise after that while the monocytes fall. They'll play a see-saw game, but that's good! The stem cells are starting to multiple and behave!

Scott's counts for the day:

White Blood Cells >100 (normal 5,000)
Hemoglobin 9.9 (up) (normal 11.5)
Platelets 25,000 (up) (normal 160,000)
ANC 51 (even)
Monocytles 13 percent
Neutrophils 58 percent!

Scott has had a really good day today. Scott has a tendency to pick at his lips and fingers, and so Scott has had an addition of gloves to his hands. He doesn't mind at all. He looks like a nice yellow banana in his yellow p.j.s and yellow socks on his hands! He's being more responsive to the sounds and people around him, which is a great sign. And no fever and vomiting! Hooray for the small steps. The other thing that Scotty likes to do lately is sip on water (never liked water before - always went for the juice or milk) and just hold his cup.

Ally is having a BALL in Ely. Specific instructions were given to Laura to NOT call her tonight! She'll be WAY too busy with her fish fry down at the lake with the aunts and uncles and cousins. It's great to see Ally enjoy being an independent young lady!

"Life is an opportunity, benefit from it. Life is a beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is life, fight for it!" - Mother Teresa

Sunday, June 19, 2005 2:30 PM CDT

Day 10

Counts for the Day:

White Blood Cells >100 (normal 5,000)
Hemoglobin 9.9 (up) (normal 11.5)
Platelets 16,000 (up) (normal 160,000)
ANC 51 (up)
Monocytes 20 percent
Neutrophils 55 percent

On Friday Scott had a lot of swelling and they couldn't figure out what was going on. They went down for a CT scan. At first they were diagnosing him with something that happens a lot in neutropenic children. However, on Saturday they found out it ended up not to be that. That was a really good thing because the diagnosis was not good. Causes a lot of complications.

Scott continues to take small steps. He has not vomitted since Thursday. He is now receiving oxygen through a tube directly into his nose so that he can breath much better which makes him much more peaceful and able to sleep better.

Aunt Nancy is back in Dallas. Nancy and Ally spent the day at Britta and Luke's in Delano on Friday. They got to swim and go to the peony farm. Lots of fun.

"We can learn so much from children." - Laura Johnson

Thursday, June 16, 2005 6:44 AM CDT

Day 7

UPDATE: Scotty ate a French fry today!

Scott is continuing to progress, stay strong, and work hard on getting those stem cells to engraft. It is so important that he continue on his upward journey and stay as infection-free as possible. There have been a few bumps in the road, but most of it Laura and Greg have been prepared for. Scott continues to battle high fevers, vomiting, and mucositis.

Ally had a great day yesterday. She loves Bible school. Yesterday she had a special treat. Aunt Nancy took Ally and Kathryn and myself to the studios of Radio Disney. Aunt Nancy works at ABC Radio and was able to bring Ally to the studio. She got to meet P.J. the D.J., and let me tell you, they loaded her up with all sorts of special goodies. We had to get a U-Haul to bring it all home. Today will be spent, hopefully, at the pool without ANY rain.

Ally, Greg, and Aunt Nancy say special thanks to the Kiley family for dinner last night. The neighbors have been providing meals, which has been a tremendous help for Greg and Ally.

"Progress is the activity of today and the assurance of tomorrow." - Ralph Waldo Emerson

Wednesday, June 15, 2005 7:18 AM CDT

Day +6

On June 11 & 12, 2005, a group from Minnesota hosted two big Alex's Lemonade Stands in Minnesota - Canterbury Park & Mall of America. They raised over $7000 to fund Pediatric Cancer Research....You can view the pictures:

http://www.maryhollway.com/PageManager/Default.aspx/PageID=1210514&NF=1

Alexandra "Alex" Scott was the 8-year-old founder of Alex's Lemonade Stand For Pediatric Cancer Research. Two days before her first birthday she was diagnosed with neuroblastoma, an aggressive childhood cancer. At the age of four, Alex decided to do something to make that cure more likely. She opened her first lemonade stand in July of 2000 with the idea of donating the proceeds to "her hospital." Each year since, Alex has held an annual lemonade stand in her front yard. As word has spread, donations have poured in from around the world, and she has raised over $1,600,000 for pediatric cancer.

And how did Afleet Alex get involved? To Zacney, one of the owners of Afleet Alex, it seemed like more than just a coincidence the 9-year-old victim of the juvenile cancer neuroblastoma partially bore the name of Afleet Alex, the Preakness (gr. I)-winning horse he owns with Cash is King partners. Afleet Alex, originally named after Zacney's son and two of the other partners' children, was bred by John Silvertand, who also is battling cancer.

Zacney and partners were touched by the impact of Alex Scott's original front-yard lemonade stand she created to raise funds for the research of her illness, and the courage she displayed throughout her life. They began donating a portion of Afleet Alex's earnings to the child's cancer cause, as well as promoting the support of more stands.

Alex's story and her efforts live on thanks to Afleet Alex’s co-owner Chuck Zacney of Upper Providence, Delaware County, PA, trainer Tim Ritchey and the rest of the ownership team who donate a portion of Afleet Alex's winnings to Alex’s Lemonade Stand Foundation.

Tuesday, June 14, 2005 7:44 PM CDT

Day +5

Scott's counts today:

White Blood Cells >100 (normal 5,000)
Hemoglobin 9.4 (normal 11.5)
Platelets 8,000 (normal 160,000)- transfusion today
ANC 0

Scott's making small, tiny steps. He was able to extend his period of time that he was awake yesterday. Had a rough night around 3 a.m. and finally got to sleep around 5 a.m. His heart rate is doing better - not beating so fast. His liver is swollen, so they will do a test again to see what's going on.

He has a lot of mucositis going on right now. It's the worse it's ever been. They have a suction device that they try to help Scott rid himself of the mucous, but he dislikes the suction - and clamps down his teeth and won't let anything in.

Ally has been attending Bible school this week. Ally has been the backseat driver for Aunt Nancy - Ally can get her anyplace in Apple Valley. We're hoping for nicer weather so Nancy can bring Ally to the pool.

"One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon - instead of enjoying the roses blooming outside our windows today." -- Dale Carnegie

Sunday, June 12, 2005 10:03 PM CDT

Day 3

Scott is getting better every day. It may be in small teeny, tiny steps, but he's on the upward swing.

Laura spent the weekend with Ally. Greg spent the weekend with Scott. Ally starts Bible school this week. Aunt Nancy arrives from Dallas tomorrow.

We pray for a good week for you, Scott, and that you continue to improve every day.

"Whoever wants to reach a distant goal must take small steps." - Helmut Schmidt

Thursday, June 9, 2005 1:59 PM CDT

Day 0

Scott's counts today

White Blood Cells 100 (even) (normal 5,000)
Hemoglobin 9.8 (down) (normal 11.5)
Platelets 41,000 (up) (normal 160,000) - transfusion yesterday
ANC 19 (down)

Laura just called and Scott's transplant went very well. The first few hours can be critical because of the transplant, but he's passed those hours. Whew! Greg was with Scott when the transplant happened. Laura had an appointment today. Laura will be there tomorrow for the second transplant.

Scott has been sleeping lots. He will be receiving TPN with albumin, calcium, and protein today. His liver enzymes are down, so that's good.

Laura and Greg are not taking visitors until further notice - probably after engraftment.

"The only courage that matters is the kind that gets you from one moment to the next." - Mignon McLaughlin

Thursday, June 9, 2005 10:35 AM CDT

Day 0

Greg called to say that the stem cells are to be arriving at 10:30 from the Memorial Blood Bank. They will be thawed out and then infused. Scott's currently hooked up to a telemetry system for his heart which is wireless sent down to another floor where it is monitored continuously and with staff specifically trained in that. Linda will be Scott's nurse for the day - one-on-one care.

Scott's been doing a lot of sleeping, which is good. He's comfortable and the pain management is under control.

"A good laugh is sunshine in the house." - William Makepeace Thackeray

Wednesday, June 8, 2005 7:44 PM CDT

Day -1 (again)

Scott's counts for the day:

White Blood Cells 100 (down) (normal 5,000 to 10,000)
Hemoglobin 10.2 (up) (normal 11.5 to 13.5)
Platelets 26,000 (down) (normal 160,000 to 500,000)
ANC 29 (down) (normal 1,500 to 8,000)

Scott started feeling the strong effects of chemo last night (which has been expected). He was pretty much sleeping on and off today with bouts of getting sick in between. He had a few smiles in him, but pretty tired all day. Laura has been really good on keeping on top of his pain symptoms. The mucositis has started to kick in too. His spark in his eyes is gone, so I know he's very tired. Aunt Nancy did send some sunshine his way, though, to hang up! He did receive a platelet transfusion today. Scott will start transplant tomorrow around 10 a.m. He will be monitored 48 hours on the telemetry system.

The good news of the day is that Scott has a new cousin to play with - Merrick - who was born this morning to the M&M family. Congrats to them!

Here's wishing for a successful transplant, Scott, and all things go as planned. You are such a strong boy - and we know you can do it. We're all cheering for you!

"We are all cells in the same body of humanity." - Peace Pilgrim

Tuesday, June 7, 2005 8:20 PM CDT

Day -1

Counts for the Day:

White Blood Cells 300 (normal 4,300 to 10,800)
Hemoglobin 7.6 (normal 13 to 18)
Platelets 39,000 (normal 140,000 to 450,000)
ANC 252 (normal 1,500 to 8,000)

I stopped by after work today on my way from downtown back to Apple Valley. Scott had just woke up from a nap. The new video of the month for Scott is Phantom of the Opera. My daughter Kathryn borrowed it to Laura for her to watch, but Scott Alan just loves it. Of course the surround sound Bose speakers in Scott's hospital room make the singing just lovely :). He played with his train today and enjoyed opening up his mail! The room looks great. The picnic table is set up and the fish are swimming! Laura wanted to thank everyone for the interior decorating!

Scott's had some bouts of getting sick today. Scott had a scan tonight just to make sure, again, everything is okay in his little tummy. There's a lot of bile - that's mainly it.

The transplant will not take place tomorrow. There needs to be 72 hours from chemo to transplant. Because chemo started late on Wednesday and didn't get over until Sunday around 4:30 p.m., the soonest it could happen would be 4:30 p.m. on Wednesday, but because of staffing issues (not an oncology doctor around), they will wait until Thursday morning to do the transplant.

Scott had a blood transfusion today. They are also replenishing his phosphorus levels because the chemo has depleted it. His enzyme levels for his liver are high, but today have gone down significantly. They are watching his counts, because VOD (veno-occlusive disease) can occur as a result of chemotherapy. It is an inflammatory clotting in the veins of the liver. Symptoms include jaundice, liver dysfunction, weight gain, and extra fluid in the abdominal cavity. It can be managed successfully, but needs to be watched closely.

Scott will have another day of rest tomorrow and I'm hoping he won't be in too much pain and be able to play again tomorrow!

"I wish no living thing to suffer pain." ~ Percy Shelley (1792-1822)

Tuesday, June 7, 2005 7:55 AM CDT

Day -1

By the way, if you are wondering why the headings are posted with Day -7 and so on, it is because that is how they count days when doing transplant. The first day is Day -7 and then count down to Day -0, which is the day Scott receives his stem cells back. From there on, we count up is positive numbers, Day 1, 2, 3, etc.

From what Greg and Laura have been told, the "honeymoon period" is from Day 1 to Day 3, which the chemo is just about out of Scott's system and he actually feels okay. After Day 4, however, he'll start with the mucositis, and then it is no fun entil "engraftment" when the cells start to go up on their own. This happens usually around day 12-14.

Scott had a good day yesterday. He has a bit of nausea. He went and had a scan yesterday to make sure the NJ tube is in the correct place, which it is. David and Eric came to visit Scott before they headed back to Wisconsin. Grandpa came up from Wisconsin to be with Ally this week. Aunt Nancy will be coming from Texas next week to be with Ally. Scott received some "beach items" in the mail yesterday and they're up on the wall.

Scott's counts 6/6/05:

White Blood Count 1300 (normal 4,300 to 10,800)
Hemoglobin 7.8 (13 to 18)

"Today is a smooth white seashell, hold it close and listen to the beauty of the hours." - Anonymous

Saturday, June 4, 2005 9:44 AM CDT

Day -5

Scott had a really good day yesterday. He's seeming to tolerate the chemotherapy okay. His newest idea of fun is to call people and also to answer the phone when it rings. The hospital operator got a few phone calls from him yesterday. I got a nice little message from Scott on my voice mail telling me what was going on all day at the hospital.

Birthday boy went down to spend the weekend with Scott. It's going to be 007 weekend for Greg and Scott. Laura's brother David is here at the Edina Art Fair so Laura will be heading down there to visit with him. Ally made a starfish last night to put up in Scott's room. She really misses having Scott around home.

"One cannot collect all the beautiful shells on the beach. One can collect only a few, and they are more beautiful if they are few." - Anne Morrow Lindbergh

Thursday, June 2, 2005 5:18 PM CDT

Day -6

Scott has had a really good day today. He did get sick this morning, but he was in really good spirits around noon today. He really enjoyed playing in the water in the sink and pushing around his IV pole. He's not interested in eating, so they've started feeding him through his NJ tube. He'll receive approximately 700 calories a day. Dr. Richards examined Scott and talked to Laura a little bit about the transplant. The stem cells are in Minneapolis at the Memorial Blood Center, so that's a relief. Because of the large amount of stem cells that they will transfuse, it will be a two-day process. They can only do so many each day because of the preservative that the stem cells are in. Apparently it smells like creamed corn. We'll have to get Laura's take on that when it happens.

As for the room Scott's in, the interior decorating is much to be desired. Apparently Children's doesn't hire Room and Board to come in, so we've all got a job to do. Scott's theme for his room this stay is "the beach." Scott is looking forward to spending some days after treatment on the white sand beaches of Navarre Beach - along with many celebration parties! Laura has decorated his windows with tropical fish, but the room needs lots of cheering up! So everyone is invited to make something "beachy" to hang up on his soffit of the room. Colorful fish, beach balls, sand buckets, umbrellas, lemonade - you name it. Make something, sign your name to it, and send it off. You can mail it directly to the hospital:

Patient Scott Johnson, Room 8108
Minneapolis Children's Hospital
2525 Chicago Avenue South
Minneapolis, MN 55404

I've just received word from Ally that it's really important that I know that there's a turtle in the neighborhood. Rebecca's mom brought it back to the pond so it's safe! Whew!

A little birdie told me it's Greg's birthday tomorrow too! Hmmm, I bet he's close to 55 now; right????

"A bad day at the beach is better than a good day at work." - Anonymous

Thursday, June 2, 2005 7:52 AM CDT

Day -6

Scott is doing really well. Yesterday was the first day of chemotherapy. He's been tolerating it okay so far. Yesterday was a pretty uneventful day. Scott got his hearing tested, had a good afternoon nap, and played the rest of the day. The nurses enjoyed seeing him again - and he was flirting with them, of course!

"If you watch how nature deals with adversity, continually renewing itself, you can't help but learn." - Author Bernie Siegel, MD

Thursday, June 2, 2005 7:52 AM CDT

Wednesday, June 1, 2005 1:38 PM CDT

Scott went to the hospital today to start his transplant procedure. He will receive chemotherapy (heavy doses) for five days. Then he have a rest for three days. Then he will have his stem cells transfused. The transfusion takes about 20 minutes - just like a regular blood transfusion. Then we'll start to watch his counts go down. Then it'll be a numbers game waiting for the counts to come up. Many good wishes for a speedy recovery, Scott! Everyone is cheering you on!

"The most important medicine is tender love and care." -- Mother Teresa

Tuesday, May 24, 2005 5:45 PM CDT

Scott went in today to have a CT scan, a GFR test (kidney function), and an echocardiogram. The CT scan came back just fine. The GFR results and echocardiogram results will come back later.

Scott's been having really good days. He doesn't like to go to bed, though. He's been up all hours of the night and keeping mom up! Scott's been going for rides in the cozy coupe and playing outside.

"Be Kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

Monday, May 23, 2005 2:55 PM CDT

The Johnsons had a really good weekend. Started off with a "party" to celebrate Scott's coming home. Laura has decided that the pizza routine needed a little mixing up so it was Chinese! Saturday Scott spent some time outside in his cozy coupe with Greg as the driver. Lots of time spent just playing and having fun. Sunday Scott went to see Zoe, Danielle and Ryan's new dog. He loved Zoe licking his face. I really think it's time for a dog for their family! Greg, Laura, Ally, and Scott just really enjoy when all four of them can be together in one place at one time! It's a treasure.

"There is no psychiatrist in the world like a puppy licking your face." -- Bern Williams

Friday, May 20, 2005 2:16 PM CDT

Scotty's home, Scotty's home! He's as happy as a lark and grinning ear to ear!

"The most important work you and I will ever do will be within the wall of our own homes." - Harold B. Lee

And on a lighter note:
"If you cannot read this, please ask the flight attendant for assistance." - United Airlines Flight Safety Brochure

Friday, May 20, 2005 2:49 AM CDT

Kathryn and I went to visit Scott last evening. He is doing great! His chest tube has been removed and also his catheter. He was in high spirits. We brought him a cookie and he had a bite of it, also was drinking some orange pop. All in all, he's really on the mend. He really bounced back quickly from surgery. His counts are good and he doesn't have a fever. He was happy to have some company, and he was smiling the whole time - well, except when we accidentally got the wrong item from the vending machine. We took Scott on a wagon ride. Half way through the ride he decided to get out and push and pull the wagon himself. Then he ditched the wagon and just decided to walk himself. The outing ended with Scott getting Dorito's at the vending machine - M&Ms were not the choice he wanted - whoops.

Scott was his amazing little self. When the nursing staff comes in to take his temperature and blood pressure, he lets them know which leg to use for his blood pressure and which arm to use for the temperature. He also knows how to run the pulse ox machine. He can get the data to move vertically and horizontally and turn on the volume. More than the nurses knew, even!

Here's hoping he'll be home this weekend!

Wednesday, May 18, 2005 10:54 AM CDT

Heard from Greg this morning. Scott was up last evening until 4:30 a.m. Laura, needless to say, slept in this morning when Scott went to sleep. They're trying to regulate the pain meds and get everything squared away. It's trying to find a happy medium. He's in much more pain because of the location of the surgery, along with a chest tube that's been insert to help drain fluids. Here's hoping for a speedy recovery.

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Tuesday, May 17, 2005 6:49 PM CDT

Greg called Brad around 6:30 this evening. Scott is in recovery. The surgery went fine.

Tuesday, May 17, 2005 2:49 PM CDT

I just heard from Laura and Greg. Scott went into surgery around 2:30 p.m. The surgery was held up because of operating rooms and the procedure before them went longer than expected. Scott was happy, though, on some "good stuff."

Scott will be having a thoracotomy to remove the remaining tumor. They will go in on the right side through the rib cage, move aside the lungs, and then remove the tumor. The procedure should take between two and three hours. The tumor will be biopsed at that time also. I'll keep everyone posted as soon as I hear anything from Laura or Greg.

Irwin Sarason: "Good friends are good for your health."

Sunday, May 15, 2005 9:58 AM CDT

Scott should be on his way home right about now. Greg has spent the weekend with Scott. He's doing much better. His counts are slowly coming around, so they're letting him out for a few days before surgery.

Greg and Scott spent Friday night fishing! Yes, Scott broke the law and started fishing before midnight, before the opener, but hey, he only caught a few dozen walleyes, a few northerns, and tons of perch! Scott really enjoys his new fishing pole. It's kept him quite busy these past few days.

Tuesday's surgery will be to remove the remaining tumor near his aorta. Many prayers and good thoughts for Dr. Rustad and his team who will be performing the surgery. We hope Scotty's recovery will be quick. Scott will start the day off on Tuesday receiving platelets in the morning and then surgery at noon.

Grandma is on her way down to spend the week with Ally. Jane and Ron will be bringing her today. Ally had a birthday party with her friend Rebecca on Friday night. Then on Saturday Ally came to help our family with our flower fund-raiser in our garage. We had delivered about $10,000 worth of flowers. She was a huge help to us, along with Rebecca, and helped sort the flowers.

"Kind hearts are the garden, kind thoughts are the root, kind words are the blossoms, kind deeds are the fruit." -- John Ruskin

Sunday, May 15, 2005 9:58 AM CDT

Tuesday, May 10, 2005 1:24 PM CDT

Dear Family and Friends,
Well, it has been one more week in the hospital with fevers and low blood counts. Scott finally smiled today and is out of bed playing with his new fishing pole. We are getting ready for a MIGB scan on Thursday and Friday. Please pray that no neuroblastoma cells are found. We would like to thank everyone for their continued prayers. I belive without prayers Scott would not be healing as fast.
Next on the schedule for Scott is a second surgery on May 17th which will remove a small tumor in his chest. The tumor is 1 to 1 1/2 cm, the same size of tumor removed in scott's abdomen. Then, Scott's transplant is scheduled for June 1st and we will be in the hospital 4 to 6 weeks.
Thank you once again for all the love and support you have given.We are truly blessed with wonderful caring friends and family.

Love, Greg, Laura, Allyson and Scott

Monday, May 9, 2005 9:45 PM CDT

Hello! Scott is hanging in there - still in the hospital. We've been gone for the weekend, so I haven't been able to update. Scott had a CT and bone scan on Friday. Great news is that there is no cancer in his bones. The tumor in the chest has not shrunk since the last scan (done before the first surgery). Scott will have an MIBG scan on Friday. Surgery is scheduled on Tuesday, May 17. It will be an open chest surgery - not laproscopically. They want to get in and make sure every part of the tumor is taken.

Scott had inserted an NG tube on Friday while sedated for his scans. He HATES the tube. Literally can't stand it. The reason it was put in is that he's fighting the sores in his intestinal tract and he's not eating. They give him TPN, but the tube helps stimulate the intestines and keep the system working.

His counts are coming back slowly but surely! They're all hoping that perhaps he can come home for a day or so before his MIBG on Friday, and we're all hoping that's so.

"God could not be everywhere and therefore he made mothers." ~Jewish proverb~

Friday, May 6, 2005 8:11 AM CDT

Scott today will have both a CT scan and bone scan. The bone scan was put back on the schedule yesterday afternoon. It can be done at this point in time before the transplant. Surgery is tentatively scheduled for Tuesday, May 17. Transplant is tentatively scheduled for Wednesday, June 1. (Remember, things can change in a matter of minutes, it seems like).

Scott had a nice Cinco de Mayo yesterday. I went up around 11 or so to celebrate Cinco de Mayo with Laura and Scott. When I arrived Scott was taking a cat nap. When he wakes up he's really groggy and irritable but get him distracted in things and he's fine. I brought up some plastic Margarita glasses and colorful plates and we celebrated. I can't seem to find my sombero - has anyone seen it? He even ate a tiny bit of the tortilla. (He's currently on TPN, which is the nutritional IV fluid.) His mouth is really sore and you can tell it's hard for him to swallow. He holds his throat a lot.

After eating we brought out some things to do. We opened up these capusules that you put into water and they turn into sponges in the shape of a train (dollar bin at Target - best place to find toys). He loved doing that. Then he got to open his bubble machine. Well, then I had to go searching for batteries. Found some across the street at the gas station. Then we had to find a Phillips screwdriver. I guess I need to come more prepared. Scott patiently waited while all this happened. We filled it up - and out came the tons of bubbles! He loved it and laughed and smiled. It was great to see him happy and distracted! The little machine puts out tons of bubbles - the floor was covered in bubbles and then got slippery and wet! Caution. Then it was naptime, and he was not a very happy camper as I was leaving!

It was great to visit with Scott and Laura. Laura has decorated his windows with window markers. She is the artist up on the 8th floor. When Scott first got up there during Christmas somebody had painted the windows to the rooms with Christmas items. Nobody seemed to clean them off until, oh, March. When Laura comes into a room, she paints the windows. All the ones Laura has painted are still up - Happy St. Patrick's Day - yes it's still up, April showers bring May flowers, last room was geometric shapes. This room she drew "You are my sunshine" with a beautiful sun and flower. Then on the door windows are the geometric shapes again. It's really bright colors! It's an added bonus if you get into a room that Laura has drawn in!

Wishing all the moms a Happy Mother's Day this weekend!

"Wherever you go, no matter what the weather, always bring your own sunshine." -Anthony J. D'Angelo

Thursday, May 5, 2005 6:49 AM CDT

Yesterday was a day for Laura to comfort Scott and make sure he's feeling okay. They still are not sure what's goin on with him. Pretty sure it's stomach cramping and pain from one of the chemotherapy drugs. He did get some blood yesterday. He did talk to me on the phone last night and I got him to laugh, so he's hanging in there. They will go ahead with Scott's CT scan on Friday. Happy Cinco de Mayo, Scott and Laura!

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And for you, Laura!

Wednesday, May 4, 2005 7:00 AM CDT

Well, the stay at home was short-lived. Scott went back into the hospital last night around 8:00 or so. He developed a fever in the late afternoon. Greg brought Laura down to the emergency room at Children's and they soon thereafter got a room up on the 8th floor. The protocol is that they have to go through the emergency room before being admitted. Last time they spent HOURS in the emergency room. This time it seemed to go quicker.

Yesterday's clinic visit was - well, one of frustration - to say the least. Apparently there was a bit of miscommunication and all the tests that are scheduled for Scott are too early. They need to be approximately two weeks before transplant. So no more tests/scans until later. It was very frustrating for Laura, to say the least. Scott did end up getting some platelets. They got home around 3 p.m.

Will keep everyone posted on what's going on with Scott and why the fever. Hopefully they had a somewhat peaceful night. He was not a happy camper before they went to the emergency room. He was irritable. He is neutropenic (low blood counts) so they're in a pressurized room that filters the air.

"The future depends on what we do in the present." - Mahatma Gandhi

Tuesday, May 3, 2005 10:21 AM CDT

Scott and Laura today are spending their day at the clinic and hospital getting lots of tests. Scott has a battery of tests coming up within the next two weeks - CT scan, bone scan, EKG, MIBg scan, audiogram, the whole works - getting ready for his second surgery and stem cell transplant.

The weekend was an eventful one for Allyson. She was in the Burnsville ice show - this is her third year doing the ice show. The theme was Viva Las Vegas. She was in the Belligio Dancing Water song. She did a great job - beautiful spiral and waltz jump!

Not much else new to report - no news is good news. Scott's been doing great. His latest thing to keep him busy is playing in the sink. Fill the watering can up with water, step down off the step stool, walk to the toilet, pour the water from the watering can in the toilet, flush it, walk back to the sink, step up on the step stool, turn on the faucet, start all over again! Hey, anything to keep him happy and occupied! It's amazing how the $100 toys seem to stay in the corner!

"The really happy person is one who can enjoy the scenery when on a detour." - Anonymous

Friday, April 29, 2005 8:09 AM CDT

Scott got home yesterday around 3:00 or so. I had the honor of being able to bring him home! He had a truckload full of stuff! He was in the hospital for two weeks. He loved watching the airplanes out of the windows in the truck on the way home! When it's time to leave, Scott is anxious to get going!

It truly amazes me what a trooper and inspiration he is. He is the happiest guy no matter what they do to him - change dressings, taking medicine. He helps the nurses do whatever they have to do. He can eat and have his temperature taken at the same time. He just lifts up his arm. He points to which leg he wants his blood pressure taken on. He pushes in the heparin flush for his lines. He's doing to be a doctor, I can tell.

One of his newest things he likes to do is play butterfly kisses with you. Since he has no eyelashes, his game is unique. He gives you butterfly kisses on your eyelashes with this little soft kitty he got in his Happy Meal. Then he giggles. His other newest thing to do in the hospital is to line up all his Happy Meal toys and play cards with them. He deals cards to all his newest friends! Maybe he's going to be a Pit Boss!

Every time I see him it just reminds me how precious life is and not to take anything for granted. "Life is short - use it to your potential!" - Anonymous

Thursday, April 28, 2005 10:03 AM CDT

Scott's busting outta the hospital around 1:00 today! Hooray!

Monday, April 25, 2005 6:41 AM CDT

Scott had such a great weekend with Greg. Friday night Greg and Laura did the ole switch-a-roo. Ally and Laura got to spend the weekend together, and Greg and Scott got to spend the weekend together.

Saturday afternoon Greg took Scott for a wagon ride through the tunnel to Abbott Northwestern Hospital to McDonald's! Scott chowed on chicken nuggets and French fries. They unhooked him from his IVs and off they went. Then later on in the afternoon they had an ice cream sandwich from the vending machine! Scott had chocolate ALL over his face. Sunday they went for more wagon rides. Scott was in high spirits Sunday.

Ally had a great weekend with Laura. She got to do lots of fun things with Laura. Friday night Grandma, Laura, and Ally came over to our house for dessert pizza. Grandma left Saturday morning with Ron back to Ely. Saturday Ally played with some neighbor friends. Then off to the Cheesecake Factory for dinner. Yum-yum. It was the place that Ally picked. Ally and Laura stayed up until midnight watching Aristocats. Sunday was spent shopping at the mall. Ally picked out some really cool Disney Princess items at the Disney Store.

Scott will start chemo this morning. Hope all goes well with this round. This tends to be the round that he tolerates well, so we're hoping everything goes smoothly.

"Goodness is the only investment that never fails." - enry David Thoreau

Friday, April 22, 2005 10:34 AM CDT

Scott Alan called me this morning about 9 a.m. to let me know - he got his NG tube out (tube that is passed through the nose and down into the stomach. Is used to remove contents of the stomach, including air and fluid. Can also be used to place nutrients directly into the stomach) - and he's happy, happy, happy. That was really, really bugging him! He hated it. He also told me that he's not sure what he's going to do today, but pretty sure the day involves watching Chitty-Chitty! Apparently when I was asking him questions on the phone he was animated with his hands like "I don't know what I'm going to do today," but smiling the whole time.

The tube made him miserable. The minute they said it was okay to get out, Laura had the nurse down there. With the tube out he's much more relaxed and happy. Yesteday was a pretty miserable day, although he did laugh once when throwing spiders on the ceiling and having them stick! Great toy at the dollar bin at Target.

He's on his way to healing. Hooray! The pathology report came back yesterday. They found out that 90 percent of the tumor was matured (dead) cells. 10 percent was immature cells. They are thinking the tumor in the chest will probably be the same. Scott will start his sixth round of chemo on Monday. In approximately five weeks he'll have his second surgery. Then after recovery from the second surgery he'll have stem cell transplant.

"Enjoy what you do and do what you enjoy. Smile, whistle, sing, hum, or dance all day while working, traveling, waiting. It makes your body think it’s happy." - Anonymous

Wednesday, April 20, 2005 8:01 PM CDT

Heard from Laura and Greg today around 5:30 or so. Scott's surgery went well. They removed the one tumor around the adrenal gland. It was the size of the end of a fingertip. They also removed the adrenal gland. The adrenal gland is the gland that controls your "fight or flight" response. They are located on top of the kidneys. We have two, just like our kidneys. The pathology report won't be back until Friday at the earliest. Scott came out of surgery well. Happy to see Laura and Greg. They are able to control his pain with meds. And to know that he is himself - he disliked watching the news on TV and indicated he wanted Chitty-Chitty Bang-Bang.

I'm so thankful that all went well. It's nice to know that he's one step closer to the end of treatment.

"Never tell a joke to your surgeon just before they start the operation. It is very hard for him to cut straight when he's laughing." - Anonymous

Wednesday, April 20, 2005 8:01 PM CDT

Tuesday, April 19, 2005 9:08 PM CDT

Scott finished his third stem cell harvest today. They collected the largest amount of stem cells today. It's like Scott knew - okay, folks, this is it - I'm going to produce the most I've ever done. His femoral line was taken out around 5 p.m. with no complications. His nurse Kara did a great job. It helped to have him distracted by the plastic spiders that Laura threw at the ceiling. They'd stick to the ceiling for a while and then fall down! Scott laughed and laughed. It's time to get pest control at the hospital. He also has plastic worms and frogs.

Scott will have surgery tomorrow to remove the tumor that started at the adrenal gland. Surgery will last approximately three to four hours, depending on how everything goes. Laura was able to talk to the doctors today. Scott will have a second surgery to remove the tumor that's remaining in the chest. That surgery will take place later. After he has recuperated from surgery, he will start his sixth round of chemotherapy.

Scott feasted on his favorite meal tonight - spaghetti and meatballs. He had fun picnicking on his playmat. He ordered from Macaroni Grill. The bread that they send along with the meal is in a loaf. Scott just decided not to cut it or eat it any other way but the whole loaf. Glad he's so happy. Laura heard from Lea today - which Laura was happy to hear from her.

We will be thinking about and praying for you, Scott Alan!

"The most important medicine is tender love and care." -- Mother Teresa

Sunday, April 17, 2005 11:57 AM CDT

Scott's back in the hospital for his third stem cell harvest. Scott went into the hospital Friday night to get ready for his harvest Saturday morning. The harvest took place yesterday. Was supposed to start at 8 a.m., but got off to a late start at 10 a.m. The femoral line was placed down in PICU and then Scott came back up to the room to have the harvest. The line kept collapsed, so they ended up taking a stitch out of the cut, which caused the cut to bleed profusely. Quite the hubbub in his room with lots of doctors and nurses trying to get him to stop bleeding. His platelets are very low. On Friday afternoon he was running around with a runny bloody nose, so needless to say, he got lots of platelets on Saturday. Laura said that he was a trooper through it all - was a very good boy and was helpful in getting the cut to stop bleeding. Scott is an inspiration to us all.

Today is a day off. Scott got up late today. He was eating a sprinkle doughnut and drinking his juice. Uncle Warren, Auntie Annie, and Grandma Betty are to arrive today. They will go up to see Scott today. Scott's hanging out in his room. He needs to lay low and keep his leg from moving too much. He will harvest again tomorrow.

" Don't expect a great day; make one." - Anonymous

Thursday, April 14, 2005 7:15 AM CDT

Scotty's home, Scotty's home!

Scott got home last evening. He's neutropenic (counts are low and very suspectible to infection), so he'll still have to be in isolation at home, but they're really happy to be home.

His days at the hospital were spent playing a lot on his play mat with his train set. He received blood and platelets on Tuesday - and was a crazy man thereafter. It's like he gets a breath of fresh air and is full or energy. He was being very silly on Tuesday.

"Alone we can do so little; together we can do so much." - Hellen Keller

Tuesday, April 12, 2005 7:12 AM CDT

Scott had his scan yesterday. Such great news from the scan. First of all, he did not have to be sedated. He's done it before just laying still and so they tried it again. It went just fine. And the BEST news is that the two remaining parts of the tumor are very small. One is 1 centimeter and the other is smaller than that. They are hoping that they will be able to do laparoscopic surgery to remove the tumors, which would mean less recovery time! That's such great news.

After Scott's scan he went into the clinic for lab work. Unfortunately, his ANC count was 40 (under 200 he has to be in isolation), plus he has a fever, so he was hospitalized yesterday back again on the 8th floor. Scott got up to the room around 11:30 or so. He had a good lunch - Cheerios, banana, parts of blueberry muffin, and parts of a bagel - oh, and don't forget the french fries. They drew blood for cultures at the clinic, so hopefully today they'll know what's going on in that little body with an infection. They're probably thinking he'll go right into harvest from this, so it may be a longer than usual hospital stay. Scott should be in a pressurized room, but the floor is full, so he'll have to wait. He was doing great yesterday at the hospital, but was anxious to receive his comfort items from home - toys, nightlight, etc.

"Kindness is tenderness. Kindness is love, but perhaps greater than love...Kindness is goodwill. Kindness says, 'I want you to be happy.'" - Randolph Ray

Sunday, April 10, 2005 8:35 PM CDT

Hello, everyone. Scott has had such a great week at home. The weather in Minnesota has been fabulous, so he's been able to go on long stroller walks with Laura. He's also been going on bike rides with Greg.

On Friday he went into the clinic for lab work and ended up getting a blood transfusion and platelet transfusion. He went to the clinic around 10:30 a.m. and ended up getting home around 8:30 p.m. They were really busy in the short-stay unit and so they did a lot of waiting around. Then Scott came home and partied until the wee hours of the morning, even though everyone else was party-poopers.

Tomorrow Scott goes in for a CT scan. He will be at the clinic by 8 a.m. The scan, hopefully, will be finished around 10 a.m. Then he has another clinic visit at 11:30. Scott will need lots of prayers and good thoughts for his scan. This will determine how much of the tumor is gone. He will be sedated during the scan.

Scott will be having a third stem cell harvest. If all goes as planned, he will start his harvest on Wednesday. The second harvest they had they will not be able to use so they'll have to do another harvest. Hopefully we can all do our stem cell dances again to bring positive results - I'll let you know when we all need to start dancing! Because of the stem cell harvest Scott's surgery has been pushed back, but there is no date set yet.

Everyone at the Johnson household is doing great. Greg and Laura say hello to everyone. Ally was off from school on Thursday and Friday for conferences. She had a great conference on Thursday. She has a great kindergarten teacher, and she's doing well at school. She has received an offer from Harvard (on the hill?), but Greg and Laura are thinking it's too early to limit her possibilities for scholarships! Stay tuned -

"Man cannot discover new oceans unless he has the courage to lose sight of the shore." - Andre Gide

Wednesday, April 6, 2005 10:30 AM CDT

Straight from Scott's fingers:

\ERsssswe=[4r\]4545re
ftfre[r[ree=s4=55]]trw;=e-rr4f]re\er\ew\dre\defr
aRee7u--remrkicjproil;poa;RRT-T-TYH[]FR[DFF=SDA-=SXA=SAS=]\F[]QP-P-[]\\

]]\XZ

Scott has decided to work with me today. He's been typing on the computer, shredding paper, organizing my desk, and answering phones. I suppose I'll have to put him on the payroll.

"Let us realize that the privilege to work is a gift, that power to work is a blessing, that love of work is success."
--David O. McKay

Monday, April 4, 2005 7:55 AM CDT

Scott had such a great day yesterday. After his nap, he spent most of the afternoon outside hanging out with all the neighbors. The neighborhood was crawling with people we haven't seen all winter. Scott went on a bike ride with Ally and Greg in the cozy coop - pictures to come. He ate a good dinner last night - more like grazing - few pieces of steak, some mac and cheese, ice cream! Loves to drink his juice - apple or orange!

"Care more than others think wise.
Risk more than others think safe.
Dream more than others think practical.
Expect more than others think possible." - Howard Schultz, CEO Starbucks Coffee, Pour Your Heart Into It

Sunday, April 3, 2005 11:49 AM CDT

Scott came home Friday morning - arriving around 11:30 or so. He came home with his backpack full of saline solution to flush him out. This time, though, they made sure he had a longer line to be able to move around with. Last time you couldn't even pick him up without having to pick up the backpack. Scott had lunch that consisted of white rice and chicken fried rice. Then in the evening, Scott had his routine pizza party Friday night. He chowed down on pizza.

Scott woke up Saturday morning soaked! The saline is doing its job and he's urinating tons! Ally and Scott had their wellness checks at their peds doctor - first appointment so there are less germs in the clinic - so they had to get up early. The appointment was at 7:45 a.m. Dr. Anderson looked them over - and they're both doing great in the development stages. Ally is 95 percentile for height! I'm hoping she'll be taller than 5' 2". Scott grew 3 inches!

Laura's friend took her out Saturday night for a belated birthday dinner while Ally, Scott, and Greg went outside to hang out. Scott pushed his stroller with his backpack in it. He loved doing that.

Today is supposed to be another warm sunny day. Hoping that Scott can get outside and enjoy the day.

"Is it so small a thing
To have enjoy'd the sun,
To have lived light in the spring,
To have loved, to have thought, to have done..."
by Matthew Arnold

Thursday, March 31, 2005 7:55 AM CST

A Day In the Life of Scotty Boy -

7:30 - get up - have some breakfast and watch a little Chitty Chitty Bang Bang or Barney

9:00 - lately been taking a little cat nap in the morning; otherwise play

11:30 - order lunch

12:00 - have a picnic on the playmat - he eats best on his playmat

12:30 - go for a wagon ride

1:00 - come back to the room to think about taking a nap - another day of chemo starts around this time

1:30 - nap time!

3:00 - wake up from nap, have some juice - lots of juice - continue to play and be silly

5:30 - order dinner

6:00 - have dinner, Ally and Greg arrive to spend the evening with Scott

7:00 - wagon ride with Ally and Greg, play with Ally

7:30 - Ally and Greg usually leave and Scott gets sad and cries

8:00 - nightie, night

"Count your rainbows, not your thunderstorms."

Thursday, March 31, 2005 7:55 AM CST

Wednesday, March 30, 2005 7:17 AM CST

Scott's doing great with this round of chemotherapy - so far! He's tolerated the chemo and hasn't been throwing up. There was ONE major problem yesterday, though - and it's a big problem and quite upsetting - the "Chitty Chitty Bang Bang" case had no DVD in it. Yikes! Greg had to take off work (hope his boss doesn't mind) and bring the DVD up to the hospital!

"If you can give your son or daughter only one gift, let it be enthusiasm." - Bruce Barton

Monday, March 28, 2005 7:49 PM CST

Scott went to the clinic this morning arriving at 9 a.m. He had his labs drawn. His counts were good, so off to the eighth floor he went. Laura arrived with her wagon load full of essentials - DVDs, crocheting, Scott's nightlight, Scott's stuffed animals, his favorite pillowcase, his trainset. Chemo was to start around 1 p.m. today. They had to prepared everything and get him ready, and then chemo would start. He didn't enjoy getting his anti-nausea "cruise" patch on, but he tolerated it and then wanted to pull it off. He had a nice lunch of chicken fingers and French fries and then was taking a nap.

Wishing Scott a peaceful week in the hospital.

"Laughter is a tranquilizer with no side effects." - Arnold Glasow

Sunday, March 27, 2005 2:31 PM CST

Happy Easter, everyone! The Easter bunny found its way to the Johnson house. Scott was chowing down jelly beans today.

Well, Scott didn't go in for treatment last week. He had labs drawn on Tuesday. At that time his platelets weren't high enough. Then the home health nurse came out on Thursday to draw labs again. This time his ANC isn't high enough. They'll go to the hospital tomorrow and find out if his counts are high enough. If so, he'll be admitted for the fifth round of chemotherapy.

Ally had a ball at the Kalahari. She even saw a school friend - Alex L. Ally swam a lot, went down the lazy river, slides, and even sat in the hot tub. Greg and Scott took advantage of the warm weather and spent some time outside this past week.

“Victory belongs to the most persevering.” -- Napoleon Bonaparte (1769-1821)

Tuesday, March 22, 2005 4:36 PM CST

Hey, everyone! It's been a few days since I've updated. The saying is true - no news is good news. Scott was to have started chemotherapy tomorrow - round 5 - but his counts came back today and his platelets are too low. So they'll wait until Thursday to draw labs, and then hopefully chemo will start on Friday. Laura and Ally are going to the Wisconsin Dells tommorrow to party at the Kalahari. This week is spring break for Ally. Florida was supposed to be in the plans, but those plans were put on the back burner, and the Wisconsin Dells are a consolation prize! Actually, she's looking forward to going to the water park.

The family had a great weekend celebrating Laura's birthday. Greg and Laura went out for dinner on Friday night and then celebrated all together on Saturday. Allyson picked out a cake with bleeding heart flowers on it because it reminded her of Laura. And Ally picked out a great gift for Laura - a really pretty necklace and earrings. Overall it was a great birthday for Laura, and she was really happy not to have to spend it in the hospital.

This weekend they will go to the Kenny Chesney concert that got postponed because Kenny broke a leg or sprained an ankle or something! It'll be a nice time for Laura, Greg, and Ally to be together.

Anne Frank: "We all live with the objective of being happy; our lives are all different and yet the same."

Friday, March 18, 2005 7:05 AM CST

Scott had a great day yesterday. He was full of energy - and happy to be playing at home. He started off the day by having a "shamrock" cookie, after a little bit of breakfast. Ally got to take her cookie to school for lunch. Laura's brother came to visit for a little while. Scott took a short nap in the afternoon. Laura thinks he woke up and probably didn't realize where he was and got a little scared. Then he continued to play all day. One of his favorite things to do yesterday was to take the DVDs and VCR tapes in and out of the machines. He doesn't necessarily watch them, just wants to take them in and out. Laura took Ally to skating last evening, and Greg and Scott hung out at home. Greg and Scott sure have a special father-son bond. Greg's a really great dad to his kids. Scott and Ally light up when he comes through that door at night from work.

"Govern a family as you would cook a small fish - very gently." - Chinese Proverb

Thursday, March 17, 2005 7:51 AM CST

O'Scotty Boy's Irish eyes are smiling today - as he's back at home. Scott came home last night! Hooray!

Irish Blessing -
"May the road rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rains fall soft upon your fields and,
Until we meet again,
May God hold you in the palm of His hand."

Tuesday, March 15, 2005 7:37 PM CST

Finally found out this early evening that Scott has C. diff. What is it? Good question. I was wondering if there's something called ocean diff, lake diff, pond diff, or Burntside Lake diff too? Anyway, C. diff is a bacteria commonly found in the intestinal tract particularly following antibiotics treatment (which he had for the rotovirus). So how do they treat it? Ironically, with more antibiotics - but different ones - Flagyl!

Scott got up today around 10 a.m. He slept REALLY long. Laura even got to take a nice shower today. Scott rounded the corner around noon or so today. He got out of bed and played with his train set. He also gets a laugh out of his whoopie cushion! The best present he's gotten! It's always good for a laugh.

Tomorrow Scott will have the GFR test. And hoping to come home soon - within the next day or two. (p.s. A little birdy told me it's soon to be Laura's birthday on Saturday.)

Ally had swimming tonight and then off to school for "math" night. Apparently it's an evening when everyone comes together and works on math. I'll find out more about it! Sounds interesting.

"I get by with a little help from my friends." -- John Lennon

Sunday, March 13, 2005 10:13 AM CST

Scott went back to the hospital this morning around 9:00 or so. Still waiting to hear from Laura and Greg what's going on. Ally is over at our house right now having fun helping Kathryn with homework, tickling Brad, and I'm going to show Ally how to knit this afternoon. Scott's been on the not feeling so well downhill chemo decline since about Friday afternoon. This morning he woke up in a lot of pain and with a dry diaper and a fever, so off to the hospital they went.

Scott went to the clinic on Thursday for his visit and blood work. His white blood count was so low that they were not even able to register it to test it. He should have had a mask on at the clinic, but he hates wearing them - so Laura snuck him out with a jacket on top of his head.

On March 16 Scott will go in for a GFR (Glomerular Filtration Rate) Test. This test is used to show how well Scott's kidneys are working. The test involves injecting a dye into a vein and taking blood samples to measure how well the kidneys’ drainage tubes are filtering out the dye.

He'll go back to the clinic on March 21 and will be admitted for Round 5 of chemotherapy on March 23.

Scott's blood counts on 3/10/05

White Blood Count 0.0 k (Normal range 4.5-13.5 k)
Red Blood Count 2.88 M (Normal range 4.7-6.1 M)
Hemoglobin 9.3 g (Normal range 12.5-16.0 g)
Hematocrit 24.9% (Normal range 36.0-49.0%)
Platelet Count 40 k (Normal range 150-450 k)
ANC 0.015 k (Normal range 1.8-10.1 k)

White Blood Cells - infection fighters
Red Blood Cells - contain hemoglobin, a complex iron-containing protein that carries oxygen throughout the body and gives blood its red color
Hemoglobin - carries oxygen to the blood; if low=amenic
Hematocrit - indicates the proportion of cells and fluids in the blood
Platelet Count - blood clotters; if low=risk for internal/external bleeding
ANC (absolute neutrophil count) - basic measure of immune system - measures the number of infection-fighting white blood cells

We'll be updating and keeping an eye on the blood counts - especially when transplant time comes - because it will be so important to see those numbers go up!

"The be-all and end-all of life should not be to get rich, but to enrich the world." - B.C. Forbes

Thursday, March 10, 2005 7:38 AM CST

Scott had another good day yesterday - and enjoyed behaving like a 2-year-old. I forgot what it was like to have a toddler. It's their way or a temper tantrum. He easily forgets what he's upset about, though, once you start playing peak-a-boo with him. He really is a good boy - and he's always smiling! He's got spunk and that's good!

Scott will go into the clinic today for his usual check-up. They'll draw blood and see where his counts are. Depending on the counts, that should help plan the schedule for the next round of chemo.

"The greatest good you can do for another is not just share your riches, but reveal to them their own." -- Benjamin Disraeli

Tuesday, March 8, 2005 7:09 AM CST

Scott is doing so well at home - you can tell he really enjoys being home. On Sunday he was outside playing and pushing his stroller around. We had a beautiful winter day in March in Minnesota - it was about 60 degrees. Scott went for a stroller ride, and Ally played on her scooter. Greg washed the car after they got back from Ely. Greg said the snowbanks in Ely are about 6 feet high.

Yesterday morning Scott received his GCSF, patiently awaiting until it beeps. Once it beeps, he's quick with his fingers and stops the pump. He knows exactly what to do. He helps Laura push his syringe of heperin into his central line. He's one smart cookie. Ally came over last evening and left everyone a message in the guest book!

"Only when we give joyfully, without hesitation or thought of gain, can we truly know what love means." - Leo Bascaglia

Sunday, March 6, 2005 10:42 AM CST

Welcome home, Scotty Boy! Scott arrived home yesterday afternoon around 5 p.m. or so. Laura and Scott took the Metro Transit bus home (just kidding) - as Greg and Ally are up in Ely snowmobiling. Greg and Ally brought Grandma Betty home. Laura heard from Greg, and Ally was having a ball snowmobiling. They're at a cabin on Burntside having a bonfire with a rather large dog pulling the kids around on a sled.

Scott's fourth round of chemo went much smoother than the third round. It was the same chemo drugs that he had on rounds 1 and 2. He doesn't get sick to his stomach, but usually he gets the mouth sores with this round, which will probably show up within the next couple of days. Scott played a lot with his trainset in the hospital on his exercise mat. He also had fun in his room with the couch that sits right by the windows. He would lay on the couch and watch TV. He'd also stand on the couch and watch people walk by. He enjoyed the janitor cleaning the floors with his big machine. He would scream and get really excited when he saw the janitor come by. He will go back to the clinic on March 10.

Scott was so happy to be home last night. He munched on a Champp's hamburger and french fries. Ran from room to room(even snuck into Ally's room because she wasn't home). He couldn't sit still long enough - and would just run around. He just explored in the house. He's needing to wear his tennis shoes in the house and while walking to help support his ankles, as they're turning in a little bit.

Any Auntie Nancy called last night and told Laura that Kenny Chesney broke his leg and has cancelled his tours. Greg, Ally, and Laura were going to the Kenny Chesney concert on Saturday for Laura's birthday. Ally will be so disappointed. I guess instead they'll have to go sit at some state high school tournament!

"Let's be grateful for those who give us happiness; they are the charming gardeners who make our soul bloom." -Marcel Proust

Friday, March 4, 2005 6:56 AM CST

You know what they say, no news is good news. Scott had a great day yesterday - he's feeling good. Grandma, Dad, and sister visited last evening! Hoping he'll be able to come home on Saturday -

"Not what you do but how you do it, is the test of your capacity." - Anonymous

Wednesday, March 2, 2005 8:10 PM CST

Greg took Laura and Scott down to the Minneapolis Children's Day Spa today. They arrived a little after 8 o'clock. They did all the necessary labs and hook-ups and everything else - he weighs 11.5 kgs (25 lbs), temperature was normal, blood pressure normal, and by 11:30 or so he was hooked up to the chemotherapy. His nurse this morning was Elayne, whom Scott calls E.

Scott had a great lunch and chowed down - chicken tenders with French fries and "fresh" grapes, cookie, and milk. Before lunch Scott walked down to the family room with his pole behind him to get a Diet Coke for Laura. He sat on the couch in his room and watched Bambi and played and dug through a billfold - and found all the money. He also played with his trainset - which he was so excited to see. Then in the afternoon he had physical therapy and speech therapy. Took a snooze around 5 p.m. and then ate a hamburger for dinner and now it's time to get ready for some zzzzz's!

The best news of all is that.......Greg and Laura learned today that Scott's tumor has shrunk 80 percent! It was wonderful news. Laura was very excited to hear that. Laura also had the opportunity to ask the clinic nurse a little bit more about the stem cell transplant and to get some questions answered. And they also learned that they have "lots" of stem cells - the last harvest on Saturday went great!

"Walk towards the sunshine, and the shadows will fall behind you." - Anonymous

Monday, February 28, 2005 5:46 AM CST

Scott came home Saturday evening around 7 p.m. He was so glad to be home - and so was Laura.

On Sunday Scott spent the day watching some videos in the morning with his dad. Laura and Ally went to church. In the evening we celebrated Scott's birthday and Kathryn's birthday (March 4) together. We had spaghetti, and Scott ate it like someone was going to steal it off his plate. He loved it. Afterwards we had an activity planned by Ally. We had activity stations to go to. The boys had to go to their station - doing the dishes. We got to color and pick out a picture in Ally's coloring books. Haven't colored for ages. It was actually kind of fun. Then Ally chased Scott around the kitchen in circles while some of us had ice cream cake.

Grandma Betty is going to come on Tuesday and visit and stay a while. Scott will go back to the hospital on Wednesday for his fourth round of chemo.

"I don't care how poor a man is; if he has family, he's rich." ~M*A*S*H, Colonel Potter

Saturday, February 26, 2005 7:56 AM CST

Laura told me that Scott had a really good harvest yesterday (apparently our dances and prayers and reverence to the stem cell Gods helped!). Dr. Richards came in and told her that late last evening - around 8:00 p.m. or so. Scott was going to receive some more blood last evening before this morning's harvest, which is normal. The harvest started this morning early - 7 a.m. Today's stem cells are for Scott's own purpose and sounds like they will stay here in Minneapolis for extras. Dr. Richards thinks it's a good idea to start chemo next week on Tuesday or Wednesday. Definitely wants to keep Scott on track and making progress.

Greg is home sick with a sinus infection, so we need to start dancing to the sinus Gods! Laura received a visitor last evening. One of the skaters who Ally knows and my daughter skates with (16-year-old Michael) is in the hospital at Children's, so Michael's mom Cindy came to visit Scott and Laura. He's got some kind of infection behind his throat and in front of his vertebral body. Laura said Cindy gave her some great pointers on Children's Hospital, as Cindy's spent a lot of time there with her second son who is now deceased. It's amazing the stories of the children and teenagers in the hospital. They're all so courgeous.

"The best things in life aren't things." - Anonymous

Friday, February 25, 2005 7:25 AM CST

Talked to Laura - and Scott had a great birthday. She said to say thank you to everyone who sent cards. Greg and Ally went up to the hospital around 4:30 yesterday and had Scott open his present - a Brio trainset. Ally put it together for him, and then he played with the trains. They had cupcakes for him - full fledged party to come later when he's at home! After Ally and Greg left for Ally to go skating, it was time, Scott decided, to have a few Chicken McNuggets.

The stem cell harvest is still continuing. They are getting less stem cells than they'd really like, so they are planning on harvesting on Saturday also. Laura has the routine down pat - and knows what needs to be there - the blood warmer, this drug, that drug. Laura is an amazing pillar of strength - and Scott's biggest advocate for him.

"May you have warm words on a cold evening, a full moon on a dark night, and the road downhill all the way to your door." - Anonymous

Thursday, February 24, 2005 7:35 AM CST

Everyone sing along -

"Happy Birthday to you
Happy Birthday to you
Happy Birthday, Dear Scotty Boy!
Happy Birthday to you!"

Yesterday's harvest went well. Scott went down to the PICU around 8:00 or so and the harvest started at 10 a.m. They decided not to sedate him so he was awake the whole time, but in a very "happy state" in order to stay still. They haven't heard how many stem cells they harvested yesterday, but will start again this morning - this time at 8:30 sharp!

Allyson and Greg went to visit yesterday evening. Scott was a happy little guy. He's decided to become a photographer. I'll put some of those pictures on the web site on a slow day - you know, pictures of the ceiling, the wall, the floor, the blanket, Ally, his mom and dad, etc., but the pictures they have taken recently are too cute and everyone should see them first.

Scott, I know everyone is wishing you a happy, happy birthday and a body that stays strong. You are a very strong boy and very courgeous! I remember the day you came into this world. Your mom and dad came over the night before and we had - guess what - pizza! I remarked to your mom, "Well, are you ready to have this baby?" Little did we know you decided it was time to be ready to come into this world. When we went to visit you in your little incubator, you were so precious, laying on your stomach sleeping soundly. They had your incubator tucked away in the corner away from the hustle and bustle of all that was going on in the neonatal unit. Your mom brought pictures and hung them up in your incubator. Ally made you a picture! You got stronger and stronger every day - every day was a milestone for you - your mom and dad holding you, taking a bath, having a bottle! Then you came home - and everyone was SO happy! I remember one afternoon soon after you came home, Ally went off to preschool, your mom decided to take a nap, and you and I got to snuggle and watch Brook on the Bold and Beautiful. It was the first time I got to hold you. You ended up falling asleep on my shoulder! You are one precious guy, Scott Alan!

"All of us are joining in to say, that may the year which your birthday begins, brings all the special things, that mean the most to you!" - Anonymous

And on a lighter note, "Last week the candle factory burned down. Everyone just stood around and sang Happy Birthday." - Stephen Wright

Tuesday, February 22, 2005 8:40 PM CST

Scott will start his stem cell harvest tomorrow morning in the intensive care unit. He's feeling much better since last week, so they're ready to go ahead with the harvest. Scott spent some time today on the exercise mat working his legs and playing with his Legos. Scott was full of smiles and kisses today. He received a blood transfusion today - fill 'er up. Scott was a cheerful giver to everyone he saw today. And Laura was a great friend for me today - she made my day! Scott, we wish you lots of stem cells within the next 24 to 48 hours!

"Good friends are good for your health." - Irwin Sarason

Tuesday, February 22, 2005 8:40 PM CST

Monday, February 21, 2005 8:47 PM CST

Scott is still relaxing and lounging around in the hospital. No word yet on when the harvest will take place and/or when he'll come home. It's always something or another. It's all a matter of timing and logistics. The stem cells have to be sent to California, so it's an issue on the day of the week. Laura and Greg switched places last night and Laura's back at the hospital. Laura's feeling a little under the weather - Greg is sick with a cold, and Ally is getting over a cold. Let's hope everyone is on the path to recovery!

"Always give a hundred percent and you'll never have to second-guess yourself." -- Tommy John with Dan Valenti, My Twenty-six Years in Baseball

Sunday, February 20, 2005 1:28 PM CST

Scott was diagnosed on Friday with rotavirus.

Rotavirus is the most common cause of severe diarrhea among children, resulting in the hospitalization of approximately 55,000 children each year in the United States. The incubation period for rotavirus disease is approximately 2 days. The disease is characterized by vomiting and watery diarrhea for 3 - 8 days, and fever and abdominal pain occur frequently. Immunity after infection is incomplete, but repeat infections tend to be less severe than the original infection. Epidemiologic features: The primary mode of transmission is fecal-oral, although some have reported low titers of virus in respiratory tract secretions and other body fluids. Because the virus is stable in the environment, transmission can occur through ingestion of contaminated water or food and contact with contaminated surfaces. In the United States and other countries with a temperate climate, the disease has a winter seasonal pattern, with annual epidemics occurring from November to April. The highest rates of illness occur among infants and young children, and most children in the United States are infected by 2 years of age. Adults can also be infected, though disease tends to be mild. Treatment: For persons with healthy immune systems, rotavirus gastroenteritis is a self-limited illness, lasting for only a few days. Treatment is nonspecific and consists of oral rehydration therapy to prevent dehydration. About one in 40 children with rotavirus gastroenteritis will require hospitalization for intravenous fluids.

Scott's still in the hospital. Greg took the Saturday shift and Laura will go back up to the hospital this evening. Not much else to report.

"Take care of yourself. Good health is everyone's major source of wealth. Without it, happiness is almost impossible." - Unknown

Friday, February 18, 2005 6:48 AM CST

Yesterday Scott had a CT scan to try and figure out what's going on in his little tummy. Good news is that they stated that the tumor has "significantly" shrunk. Nothing that they can see is going on with his little tummy. They're still thinking that he has a nasty stomach virus. The test for that virus won't go out until today at 10 a.m. (they only pick up for the test once a day and they missed it yesterday - as they didn't do the sample until around noon). They also did an EKG yesterday, and his heart is doing fine. He received some platelets yesterday, antibiotics, and some pain medication. He's hanging in there. Here's wishing you health, Scott! Get better soon!

"If we are to have real peace, we must begin with the children." - Mahatma Gandhi

Thursday, February 17, 2005 8:26 AM CST

Scott went back into the hospital last night after dinner. He's not been feeling well and has quite the cough. They took blood cultures last night. They have ruled out that he does not have the flu - so that's good news, but they're pretty sure he has some kind of nasty stomach bug going around.

The other event that happened is that Laura and Greg received a call from their oncologist. The stem cell harvest will have to take place again as they did not get enough "good" stem cells. Once they purged the stem cells there were not enough good ones. This is looked at with mixed emotions. Tough to go through again - it will start next Tuesday and he'll be in the hospital on his birthday - Thursday, but yet it's something that was okay to find out now versus when it was too late. Apparently not enough of us were praying to the "stem cell" Gods. :)

Patients may receive e-mail get well messages over the Internet. Using your normal e-mail process, address your message to Get.Well@childrenshc.org. Put the patient's name (Scott Johnson), hospital (Minneapolis) and room number (8123) on the subject line. A printed message will be delivered to the patient's room. Delivery will be once a day, Monday through Friday. To protect patient confidentiality, the hospital will not confirm that an e-mail has been delivered or whether a patient is actually in the hospital. Messages are undeliverable to the patient once they're discharged.

"It may be possible to incorporate laugher into daily activities, just as is done with other heart-healthy activities, such as taking the stairs instead of the elevator. The recommendation for a healthy heart may one day be exercise, eat right and laugh a few times a day."
--Michael Miller, MD, F.A.C.C., Center for Preventive Cardiology at the University of Maryland Medical Center

Wednesday, February 16, 2005 9:03 AM CST

Tuesday was a bit of a rough day for Scott - it seems that the nausea has decided to rear its ugly head again. Not exactly sure if it's the chemo, a flu bug, or exactly what it is. His numbers are expected to bottom out soon, and perhaps that could be adding to it also. This medicine - it's not an exact science, that's for sure.

Ally, Laura, and Greg went to swimming last evening. They left Scott at home - just kidding! He was in good hands. The dog baby-sat - and the Cat in the Hat!

Here's wishing you a happy Wednesday, Scott! Keep your strength up - you're an inspiration to us all!

"There is a form of laughter that springs from the heart, heard every day in the merry voice of childhood, the expression of a laughter -- loving spirit that defies analysis by the philosopher, which has nothing rigid or mechanical in it, and totally without social significance. Bubbling spontaneously from the heart of child or man. Without egotism and full of feeling, laughter is the music of life." - Sir William Osler

Tuesday, February 15, 2005 7:52 AM CST

Scott went to the clinic yesterday morning. His counts are still high, which is normal. They did give him a nebulizer treatment for his cough. He's doing well - and best of all - he's free from any baggage to carry along. He will go back to the clinic on Friday. Laura administers his GCSF every morning to help increase platelet production.

Scott is so happy and always has a smile on his face when you come in the door. He truly amazes me how strong he is. He made me laugh yesterday with his Valentine we gave him. We gave him some money - and he looked and looked and looked at it like it was a million bucks! He just smiled and turned the money over and over and over. Laura had him put it in his piggy bank! Then he wanted it back out to look at, but it was in the bank.

Thanks, Scott, for making everyone around you happy! You are an inspiration to all of us.

"One should count each day a separate life." Seneca (5 BC-5 AD)

Monday, February 14, 2005 7:36 AM CST

Happy Valentine's Day! Scott had a good weekend running around the house - tied to his saline pump, but nevertheless, he was home. Laura said he gave her quite the dirty look when she hooked him up to the pump again yesterday. Every 24 hours the bag has to be changed. He knows that he's attached to the backpack and motions for it when he wants to move.

Laura and I did our twitting and ricocheting (knitting and crocheting) on Saturday evening and watched movies. Laura took Scott's temperature around 10 o'clock that evening because before he went to bed he had a low-grade fever. When she went to take his temp, he was wide awake. So the three of us got to watch Chitty-Chitty Bang Bang. And then he decided that it was time to relieve himself - and I felt warmth on my pants. Yes, Scott had peed on me. The saline keeps him hydrated, that's for sure.

Laura and Scott will go into the clinic today for blood counts and a checkup! I hope that it will be a short visit and he won't have to fill 'er up with blood or platelets.

"Love is smiling on the inside and out." - Jennifer Williams

Saturday, February 12, 2005 11:02 AM CST

There's no place like home, there's no place like home! Scott came home yesterday afternoon around 2:00. He finished his last dose of chemo on Thursday. On Friday they discharged him with a little backpack pump that he has to infuse saline. He hasn't really had much of an appetite (except for last night he had his usual sausage pizza), so they gave him the saline solution and anti-nausea medication to keep him hydrated. The line that he has is pretty short, so someone has to run behind him all the time and make sure it doesn't get pulled.

Otherwise everyone seems to be doing well. Laura made it in time to attend Ally's tea party at school and surprised her. Ally is studying England in school, so they finished their unit by having a tea party. Laura was very anxious to get out of the hospital - I don't blame her!

Keep the thoughts and prayers coming. Scott is a trooper.

Euripides Quotes - "Love is all we have, the only way that each can help the other."

Wednesday, February 9, 2005 7:35 AM CST

Scott is back in the hospital and doing quite well. I will place money on the fact that I think the chemotherapy has given him the silly bug. Scott has amused himself by using his bowl as a hat on himself, on his mom, on Barney. He's also found his tongue makes great noises. He also can amuse himself by licking the back of a chocolate chip cookie for hours. He seems to be laughing and has a smile all the time.

Scott is such a strong and courgeous guy! The third dose of chemotherapy is a different kind of drug than what he's had before. Neuroblastoma responds quickly to chemotherapy but can also get immune to the same drugs, so they give different kinds of chemotherapy. This drug has made him a little nauseous, but he's a trooper and hanging in there.

Best wishes for you, Scott, to come home soon. It sounds like Friday possibly he'll come home if all goes well.

"A strong positive mental attitude will create more miracles than any wonder drug." - Patricia Neal

Monday, February 7, 2005 8:46 PM CST

Scott started his third round of chemotherapy today at 8 o'clock. Greg brought Scott down to the hospital. Laura stayed home and got Ally off to school. Then Laura proceeded to the hospital and Greg to work. Scott was in high spirits today and seems to be doing good. Grandpi arrived around 5 o'clock this evening. Here's hoping the week will go very quickly and he'll soon be home. The schedule is that he'll probably come home on Friday, but perhaps on Thursday. They'll see.

"We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have." - Frederick Koenig

Saturday, February 5, 2005 10:24 AM CST

Scott got home yesterday around noontime and soon thereafter took a nice long nap. After his nap he went outside in the stroller and picked Ally up from the bus stop. It was such a beautiful day for a stroller ride! Scott was all smiles. Scott had his favorite Friday evening ritual meal - sausage pizza. He had some fun and giggles - and boy is he ticklish on his feet - and then bedded down for the evening.

Scott's home health care nurse will come out tomorrow to draw blood to see if Scott will be ready for chemotherapy on Monday. The plans are for him to go in on Monday pending blood counts for his third round of chemotherapy.

"Living in the moment brings you a sense of reverence for all of life's blessings." - Oprah Winfrey, O Magazine

Thursday, February 3, 2005 9:54 PM CST

Wow! It's been a whirlwind week. Things can change by the hour, BUT Laura and Greg heard some great news today. They did a bone aspiration yesterday to find out if the cancer is still present in the bones - and IT'S NOT. Hooray! He's cancer-free in his bones. Laura called around 6:30 and gave me the good news. I was with some friends and my daughter Kathryn, and we were pondering the wonders of medicine and prayer and were wondering if it was the chemo that killed the cells or all the positive prayers and thoughts. Torie, Kathryn's 13-year-old friend said, "What does it matter? It's gone!" She's right. Adults think too much. We need to think more like teenagers (oh, that's a scary thought, isn't it - the world run by teenagers). Laura also said he was coming home tonight, but then he spiked a fever and around 7:30 she called me to let me know he wasn't coming home. Greg is staying at the hospital tonight with Scott. They are out of PICU and back on the eighth floor. The harvesting did not go as well as the plan they had laid out, but they feel like they harvested enough stem cells to be effect.

"Energy and persistence conquer all things." - Benjamin Franklin

Thursday, February 3, 2005 6:42 AM CST

Scott will stay in the hospital today for another harvest. Hopefully this will be the last day, but as I think everyone has found out, you take one day at a time. Scott also had a bone aspiration yesterday and an EKG as part of his testing. Results will not be available until later, although the unofficial result of the EKG was everything was okay. Scott's third round of chemotherapy will start either Monday or Tuesday of next week. It may be pushed back just because of the length of the harvest.

"I still find each day too short for all the thoughts I want to think, all the walks I want to take, all the books I want to read, and all the friends I want to see." - John Burroughs

Tuesday, February 1, 2005 8:05 PM CST

Scott's harvesting went okay today. They will, however, do more harvesting tomorrow (Wednesday). The cells were sent to the U of M to be counted. The numbers they are getting are not as much as they had hoped for, but his blood count numbers are coming up, so tomorrow could be a big day - if everyone thinks good thoughts! The cells they took on Monday will be extras. Everyone is hoping that he'll be home either late Wednesday or Thursday. Scott will go back in the hospital on Monday for his third round of chemotherapy. So he'll have some time at home, even though it will be short.

Scott is enjoying his "big" bed on the ICU floor. He enjoys using the electronics to move his bed up and down. He's almost folded himself into a pancake. I talked to Laura, and he had just finished up the harvesting, so I said hello and let her go. No more than a minute later, Laura's calling back because Scott's pointing at the phone and wants to talk to me. He gave me heavy sighs and a few Johnson words - grunts! He is such a happy guy through this all - what a trooper!

I have heard from Auntie Lea, and she has arrived home to Argentina safely and is in full swing with her teaching!

"Children are living jewels dropped unsustained from heaven." - Robert Pollok

Monday, January 31, 2005 11:56 PM CST

Scott's stem cell harvest went as planned. He was done around 2:00 or so this afternoon. Ally and Greg went to visit Laura and Scott this evening. Scott was chowing down the food tonight and was very happy to see sister and dad. Tuesday they should find out how many stem cells were harvested. If there are enough stem cells Scott may be able to come home Tuesday or Wednesday.

"A hug is a great gift! One size fits all and it is easy to return!" - Unknown

Monday, January 31, 2005 1:45 PM CST

Scott arrived at the hospital this morning at 7:30 a.m. and was admitted to the ICU. The procedure and protocols were gone over and then about 10 o'clock the harvesting started. They will harvest the stem cells for approximately four hours today. They will find out how many stem cells were harvested today. Then on Tuesday they will harvest for another four hours. Depending on how many stem cells were harvested on Monday and Tuesday, he may be done. Let's hope for MANY stem cells today and tomorrow.

Lea made it on her plane to Atlanta this afternoon. She will be arriving tomorrow in Argentina. Everyone is hoping for an uneventful and short trip for Lea. Her children are looking forward to her arriving home. Laura, Greg, Ally, and Scott will miss her. She was a great help to them.

"This is the beginning of a new day. You have been given this day to use as you will. You can waste it or use it for good. What you do today is important because you are exchanging a day of your life for it. When tomorrow comes, this day will be gone forever; in its place is something that you have left behind...let it be something good." - Unknown

Sunday, January 30, 2005 2:23 PM CST

Scott came home yesterday from the hospital for a brief rest. He'll be going back tomorrow for the stem cell harvesting. Lea, unfortunately, wasn't able to get out to Atlanta yesterday because of the ice storms. She will be leaving Monday morning instead. Laura, Lea, and Ally were able to spend some time with the M&M family on Friday. Not much more to report!

"If you're not using your smile, you're like a man with a million dollars in the bank and no checkbook." - Les Giblin

Thursday, January 27, 2005 8:31 PM CST

Greetings from your author who's in Duluth for the weekend. Scott's fever broke last evening. Today he's been fighting mucositis. The 8th floor oncology unit is full to the brim. Scott should be in a pressurized room because of his low blood counts, but because the floor is full he's in a nonpressurized room. Laura has been keeping Scott busy with toys and watching vidoes. Everything is still on schedule for the stem cell harvest on Monday. Stay strong, Scott!

I've been in touch with a family whose daughter is a neuroblastoma survivor - and a group of kids are having a fund-raising dance. The mom writes, "I just wanted to tell you haow excited our group is for the upcoming "Lunch for Life" Party. The kids have collected over 37 prizes for the Dance and have really spread the word. We expect between 100-200 kids at the dance!! All the proceeds will go to "Lunch for Life" which donates all their proceeds
to Neuroblastoma Research!! We even expect some
other Minnesota NB families there too!! Here is the article that ran in the local Edina paper:

St. Patrick’s youth holding benefit dance (Created 1/27/2005 9:44:16 AM)

A group of children from St. Patrick’s Catholic Church of Edina has chosen to raise money for the childhood cancer Neuroblastoma by sponsoring a dance.

The dance, for students in grades six through nine, will be held from 7 to 10 p.m. Saturday, Jan. 29, at the church, 6820 St. Patrick Lane. The children have gone to area retailers soliciting all the food and prizes for the dance, and 100 percent of the profits will be donated to “Lunch for Life,” an organization founded by a Chicago father whose daughter is fighting Neuroblastoma.

Tickets for the dance are $10 and include pizza, soda, ice cream and a ticket to enter the Dance Dance Revolution (DDR) contest. Tickets may be purchased at the door.

For information or donations, contact Mary Hollway at 952-925-5304.

The ninth-graders at St. Patrick’s have also been selling pins and bracelets with the logo “Lunch for Life.”

For more information about Neuroblastoma and how to help, visit www.lunchforlife.org.

Thursday, January 27, 2005 5:58 AM CST

Mr. Scotty Boy went back into the hospital yesterday afternoon due to a fever. He was looking very pale and not himself yesterday. He received some blood last evening, started on some antibiotics to fight whatever infection is going on, and is resting at the hospital.

Ally had skating last evening - and passed another level at skating. I told Greg it's time for private lessons and the Olympics.

Please keep the Johnsons in your thoughts and prayers.

"Everytime you smile at someone, it is an action of love, a gift to that person, a beautiful thing." ~ Mother Teresa

Tuesday, January 25, 2005 7:10 AM CST

Scott went yesterday for his lab appointment. Scott's blood counts are very low, but he is doing well - no infection and no fever, so he's staying at home. I personally think that Scott has done so well at home because of Laura's good hygiene with the house - keeping hands washed, the house clean, and keeping Scott isolated from others.

Scott is taking Glutamine every day. It's an aminio acid that can reduce mouth sores after intensive chemotherapy. He gets his daily dose of heparin to keep his central line open. Scott also receives the drug, granulocyte colony-stimulating factor (G-CSF), which stimulates the
production of infection-fighting white blood cells. These are reduced or destroyed during chemotherapy. When white blood cell counts become dangerously low, it leaves them vulnerable to life-threatening infections. G-CSF lessens their chances of infection and reduces Scott's need for antibiotics and hospitalization.

On January 31 Scott will be admitted into the intensive care unit at Minneapolis Children's Resort and Day Spa for his stem cell collection. The bone marrow is the soft tissue in the middle of bones where blood cells are formed. Stem cells in the marrow, as the “mother cells of the bone marrow,” are responsible for making the 3 types of blood cells: red blood cells, white blood cells, and blood platelets. Stem cells divide to form immature blood cells, which undergo a series of changes to become mature blood cells. These mature blood cells then leave the marrow and enter the bloodstream. Red cells carry oxygen to all parts of the body. The white cells are part of the immune system, which fights off disease. Platelets are essential for plugging the holes in very small blood vessels.

Most chemotherapy works by specifically destroying rapidly growing cells. Like cancer cells, bone marrow stem cells grow and divide rapidly and are very sensitive to chemotherapy. High-intensity chemotherapy can destroy the marrow completely. Without marrow, new blood cells cannot develop. To solve this problem, a child with neuroblastoma treated with very high intensity chemotherapy will need to undergo bone marrow stem cell transplantation. This transplant with stem cells is done to “rescue” (replace) the destroyed bone marrow cells.

Doctors harvest stem cells (blood-producing cells) found in the blood. The stem cells are removed from a vein by apheresis, a procedure that separates stem cells and returns mature blood cells to the child's circulation. Before freezing - which will take place in California - the marrow stem cell or peripheral blood stem cell collection may be treated with special antibodies to get rid of any remaining neuroblastoma cells that may still be in the blood or bone marrow (called purging or cleaning).

After the harvest, Scott will undergo several days of high intensity chemotherapy to destroy any remaining cancer.

Scott will receive an autologous stem cell transplant in May, which means that he will be given his own stem cells that were harvested in January before his bone marrow is destroyed by chemotherapy. The bone marrow stem cells are thawed and then reinfused (returned to the body) in a process similar to a normal blood transfusion. The bloodstream then carries the stem cells through the body to the cavities in the bones. The new stem cells immediately begin to divide and produce normal marrow cells, but the effects are usually not seen for 3 to 6 weeks.

Until the body's supply of white blood cells returns to normal, the child is at high risk of infection from bacteria, fungi and viruses. For this reason, protective measures are taken to avoid infection. Scott will need to remain in the hospital. Air filters will be used, and visitors will need to wear protective clothing. To reduce the risk of bleeding, the child may also need to have transfusions of red blood cells or platelets. In some cases, platelet transfusions may need to continue for several months.

Some things you can consider doing to help Scott and his family in the upcoming months:

Meals: E-mail me at nancy.meyer@captionminnesota.com. I will fit you in to the meal delivery schedule starting soon. Auntie Lea will soon be going back home, so food will be needed!

Shopping & Errands: E-mail me to get yourself into the rotation. These helpers take on all kinds of miscellaneous tasks, enabling the Johnsons to focus on time together as a family. Common destinations include Cub, Target, etc.

Hospitality and/or childcare: For the forseeable future, Scott won't be getting out to visit with others. Scott, Laura, and Greg prefer that he stay at home to remain healthy. However, Ally is always looking for some fun things to do. Everyone is sensitive to Ally's needs and how often she is out and about with other folks because she likes being around her mom, dad, and Scott, but perhaps you have an exciting adventure planned that she might join you for.

Shoveling Snow Help: The neighbors continue to keep the driveway and walkway clean. Thanks, everyone! Although Greg enjoyed getting his snowblower revved up this past weekend and did just about every neighbor's driveway on the street.

Donate blood! (Scott and others need a well-stocked general blood supply.) The best way you can help is to donate blood locally to the general supply. For those unfamiliar with platelet donation, please consider making a specific donation of platelets for children like Scott. It takes longer (about 90 minutes), and your blood will go through an apheresis machine. Single-donor platelets offer longer-lasting results and fewer risks to the patient (side effects, developing immunity to donor platelets, etc.).

Help us remind Scott's sister, Allyson, how special she is. Remember to make a fuss over her when you see her! Perhaps you'd like to send her a card or a little something saying how special she is.

Stay on board! Scott was diagnosed with cancer one month ago. He remains in active treatment, and no one can predict when he'll have a respite from needing treatment to keep his cancer at bay. So the Johnsons will be needing your support for a long time to come. If you've wondered how you can help, please stay interested! They value all offers of help, and someone will be in touch when they need something! Participate in the guest book. Moral support goes a long way. Greg and Laura enjoy all the messages!

You can send mail to:
The Johnsons
14283 Dulcimer Way
Apple Valley, MN 55124

And most importantly - think wonderful, positive, healthy, peaceful thoughts for Scott and his family!

"Hugs are the universal medicine." ~ Author Unknown

Saturday, January 22, 2005 3:19 AM CST

"I'm home!" says Scott.

Scott came home on Thursday afternoon around 3 p.m. Auntie Lea came to pick Laura and Scott up from the hospital. Scott was happy to be home. And everyone was happy to have him home.

Scott had a good day on Friday. He adjusted well to being home. Scott had his favorite meal on Friday - Ole Piper Pizza with sausage. He'll go back to the clinic on Monday for lab work - and hopefully will be out of the hospital until his stem cell harvest on the 31st of January.

"If you want your children to improve, let them overhear the nice things you say about them to others." -- Haim Ginott (child psychologist)

Thursday, January 20, 2005 6:31 AM CST

Cross your fingers - but Scott should be coming home tonight! He'll have his end of chemo around noon today and then a couple more hours on some medication, but everyone is hoping he'll be home this evening. Everything is on track - such as blood count numbers, eating, voiding - for him to come home today.

Scott has been in great spirits this round! It makes a huge difference that he has not had to go through surgery. He flirts with EVERYONE that comes in his room. Imagine that - a Johnson boy flirting? hmmmm

He will then go back to the clinic during the week for blood counts, etc. Then on January 31 he will go back to the hospital resort and day spa for stem cell harvesting. More info on that later.

"Love is a great beautifier." -- Louisa May Alcott (1832-88)

Tuesday, January 18, 2005 8:34 PM CST

Scott has adjusted to the hospital quite well. Yesterday he had an active day - walked around the halls of the 8th floor for a long time. Auntie Lea made it safely into Minneapolis - to a 90 degree temperature difference from where she was. Scott was happy to see her and warmed up to her immediately. Grandpa Pi, Lea, Greg, and Ally went up to visit last evening.

Today Scott had an equally good day. He had a little bit of physical therapy - more like a play date - with the physicial therapist. He visited with Auntie Lea and Grandpa Pi. Grandpa left for Milwaukee this afternoon. Scott walked around again today and rode a toy tractor, went into the playroom and played with the videogames. After his exercise, he fell asleep eating a bag of Freetos on his chest. He fell asleep with his hand still in the bag. When he woke up, he was very happy to get a treat of McDonald's French fries. Laura was going to read Ally a book over the phone and then everyone was going to settle down for a long evening nap! Night-night, Scottie and Ally! Sleep tight - everyone is thinking about you two tonight!

"Men are born to succeed, not to fail." - Henry David Thoreau

Sunday, January 16, 2005 4:22 PM CST

Well, the saying is true - no news is good news! Scott has enjoyed his week at home. He's his usually bubbly self - and full of mischief. He's a huge help at home too - goes to get all his supplies so Laura can do her "nurse" duties on his Hickman catheter!

Tomorrow Scotty and Laura will check into the Children's Hospital and Day Spa for Round 2. Why stay at a regular hospital when you can have your own private hospital room away from the crowds. Scott will enjoy his own private room with resort-style rockscape pool, 80' waterslide, waterfalls, underwater cave and 12 person spa. He's located a dramatic 900 feet above the ocean overlooking a waterfall filled canyon with views that take your breath away. Spectacular ocean views from his room and the glass walled living room brings the outside views in.

Scott's only 25 minutes from the main airport and minutes to the beach, golf course, and horseback riding trails along the ocean! Hiking trails to one of the largest waterfalls only minutes away on foot. “Scott’s Own Private Resort!" Here's hoping Scott will not stay long at the day spa!

"Nothing is difficult to those who have the will." -- Dutch Poet's Society

Wednesday, January 12, 2005 6:48 AM CST

Scott had a great day yesterday adjusting to being at home. He's been playing and napping and doing the normal things he's been doing day to day. A home health nurse visited Laura and Scott during the afternoon.

It's great to see the lights on on Dulcimer Way and know that the whole family is staying together.

"A smile is your greatest social asset." -- Zig Ziglar

Monday, January 10, 2005 12:25 AM CST

SCOTT'S COMING HOME TODAY - HOORAY!

Great news! Scott will be arriving home sometime this afternoon. Greg is going to pick Ally up from school (which will be a surprise to her) and go to the hospital to pick Laura and Scott up. His fever has been gone for more than 24 hours. He had a great day yesterday - slept lots and keep his strength up. He went for a wagon ride, watched his videos, and played with his toys.

Grandpi will be arriving today also to help Laura out. Scott won't be able to take any visitors at the house because he is still in social isolation. Mylar balloons can be accepted, but no flowers and/or plants. The health care providers want him to stay healthy for the next seven days. Everyone wants him to stay healthy so he can stay on track to beat this horrible disease. Scott will start his next round of chemo next Monday, January 17, Martin Luther King Day.

Also, I read a blurp in the paper on Sunday that the Memorial Blood Centers are asking all eligible blood donors to schedule appointments to donate blood. It needs to collect at least 2,400 units a week to meet the needs of the 36 hospitals it serves in the Twin Cities, northern Minnesota, and northwestern Wisconsin. January is National Volunteer Blood Donor Month. To avert critical shortages, blood is needed for patients with cancer, organ recipient transplants and for accident victims. To schedule an appointment call 612.871.3300 in the Twin Cities or 1.218.723.8080 in northern Minnesota or visit www.memorialbloodcenters.org

Sunday, January 9, 2005 11:07 AM CST

Well, what has happened since Friday? Scott got a haircut on Friday compliments of Laura's crochet scissor. He looks just as cute as ever. I told Greg that perhaps the Johnson, Schaefer, and Nordic boys should shave their heads in honor of Scott. Hmmm, Greg would have to think about that.

Saturday Ally and Laura went up to the hospital to visit with Scott. Ally brought some playdough and they made lots of things! Looked like they were having a grand time in Scott's crib.

Good news today - Scott's fever has come down. They are going to wean him off of his antibiotics and also some other medication. If all goes as planned, they're hoping he can come home tomorrow. Everything seems to change by the hour, though! Ally is going to the Gopher's women's basketball game again today - she has a ball (no pun intended)! She's going to wear her gopher pom-pom in her hair. She's getting all ready to go.

Keep Scott in your thoughts and prayers today - he needs lots of positive thoughts on coming home!

"Our greatest natural resource is the minds of our children." - Walt Disney

Friday, January 7, 2005 12:56 AM CST

Things change by the hour - Scott's ANC went from 400 to 4000. Wonderful news. Scott got his catheter removed. He's also stopped receiving granulocyte-stimulating factor (GSF). This is a substance normally produced by the body that stimulates the growth of blood cells. GSFs have been show to decrease the duration and severity of neutropenia, a dangerous side effect of chemotherapy that involves the presence of a lower than normal number of white blood cells in the body. His numbers will decrease a little after stopping the GSF, which is normally what is expected.
(Look at Journal History for an earlier update this morning.)

He went to the playroom this morning and rode around in the bumper car since he's pole-free again. Laura had him walk a ways too to keep his legs agile and flexible. Laura and Scotty are going to get back to their normal routine today and take a nap together very, very soon. Sweet dreams, Laura and Scott!

"Act as if it were impossible to fail." - Dorothy Broude

Friday, January 7, 2005 9:37 AM CST

Scott's numbers continue to rise - good news. They're still low, but......his white blood count went from 600 to 2,000. His ANC (absolute neutrophil count) went from 48 to 440. The absolute neutrophil count (ANC), a part of the complete blood count, is a measure that helps the health care provider assess the body's ability to prevent and fight infections. Scott still needs to overcome a few hurdles to come home - getting rid of his fever and catheter. We all hope you catch some Saturday Night Fever and disco with John Travolta this weekend at home, Scotty!

"Sunshine is delicious, rain is refreshing, wind braces up, snow is exhilarating; there is no such thing as bad weather, only different kinds of good weather." -- John Ruskin

Thursday, January 6, 2005 8:44 PM CST

Scotty had a good day today. His blood counts are coming up - and he even went for a wagon ride today. He's out of isolation! Hooray! Laura and Greg are making the switch tonight, as Greg ended up getting the stomach flu on Wednesday evening. Here's hoping the weekend brings lots of good news for the Johnson family.

"Be wise in the use of time. The question in life is not how much time do we have? The question is what shall we do with it." - Anna Robertson Brown

Wednesday, January 5, 2005 1:51 PM CST

Technology - it's great when it's working. High-speed Internet has been out of service in the Apple Valley-Rosemount area since last evening so I wasn't able to update yesterday.

Tuesday Scott was feeling some side effects of one of the chemo drugs - he was feeling abdominal cramps and constipation even though he had several suppositories and several drinks to help his intestines. Tuesday morning he went down for an X ray to make sure everything was okay. That X ray was negative for anything. Then around 12:30 Scott when down for a CAT scan. The staff wanted not to put him out for the CAT scan, so they were going to try it first with Scott staying still. Good news - yes, he stayed still! Laura held his hand and they put soft music on, and he stayed still. He really liked the glow-in-the-dark stars on the ceiling. The doctor let Laura know that the intestines are fine and it would just take time for everything to work it's way through - including gas. That was good news - plus the other good news is that on the CAT scan that they did and in the part of the abdomen that they could see, the tumor has been reduced 30 to 50 percent! That's great news that they know that the chemo has been working. Well, guess what? About 9 o'clock last evening the bowels decided to work - no further explanation needed!

Since Scott was up a couple times last evening with his intestines working and two nurses, two nursing assistants helping in the clean-up, Laura and Scott slept in until 8:30 this morning. Laura was ready to feed Scott lunch when I talked to her. Scott's blood counts are slowly but surely rising - which is great news. He's a quarter of the way to where he needs to be to be able to go home.

Ally has been busy with her normal activities. She started school again on Monday. Last evening she had swimming classes and tonight she has ice skating. Greg and Laura are going to play tag-team tonight. She'll come home and spend time with Ally. Greg and Laura wanted everyone to know how thankful they are to have so many people thinking and praying for them during this time. Check out a new picture of Scotty!

"Tomorrow's life is too late. Live today." - Marcus Valerius Martialis

Monday, January 3, 2005 11:34 AM CST

Scott wanted to make sure everyone has a little sunshine in their day today. He was smiling and as happy as the sun when he ate his new-found food friend - Cheetos! He had the Breakfast of Champions today - Cheetos and milk. The nurses aren't too concerned about it - whatever makes him happy and he eats - because he's receiving nutrition through his IV (Laura and Greg call it Mountain Dew and milk because of their colors). Actually, they're okay for him because they're high in fat content. Right now he needs to rest and regain some strength. He'll stay in the hospital until his numbers get back to where they're supposed to be. Right now he is neutropenic. Neutropenia is an abnormally small number of neutrophil cells (type of white blood cells that help fight infection) that occurs as a result of chemotherapy. When I talked to Laura today Scott was receiving physical therapy and playing on a mat on the floor with the physical therapist. Come on, Scotty Boy, stay strong. We want you home soon!

"A good laugh is sunshine in the house." - William Makepeace Thackeray

Sunday, January 2, 2005 10:13 AM CST

I talked to Greg this morning at the hospital. Scott had a good night's sleep last night - 12 hours (and so did Greg). The nurse came into the room in the middle of the night, and neither Greg nor Scott heard her. The nurse put a pulse ox on Scott's big toe, which measures his blood pressure and pulse and amount of oxygen in the blood. When Scott woke up this morning he had a big red glowing toe. Scott really dislikes it on his foot. He tries to pull it off. Scott's feeling better and drinking out of his sippy cup. Scott is going to be receiving blood platelets today, so that should make him feel better too. Greg and the nurse are going to give him a bath today also. Keep the prayers and good thoughts coming. Greg, Laura, Ally, and Scott appreciate them.

Rose Fitzgerald Kennedy: "Life isn't a matter of milestones but of moments."

Sunday, January 2, 2005 1:20 AM CST

Scott and Greg had a nice quiet New Year's Eve. Laura and Allyson spent it in Apple Valley. Laura appreciated getting out of the hospital and home to do a few things. Scott's white blood count has been low so he's been isolated in his room still. He has been showing the usual side effects of the chemotherapy, which was expected, but we all hoped it wouldn't happen. New Year's Day Laura and Ally went to visit in the late morning. Greg reported that Scott was receiving a blood transfusion to help boost his blood counts. Here's hoping that 2005 will bring health to Scott.

"The past is history,
The future is a mystery
and now is a gift.
That's why we call it the present."
--Unknown

Friday, December 31, 2004 10:22 AM CST

Scott is out of his MIBG scan. He's up in his room having breakfast - blueberry muffin. It's definitely second rate to the warm blueberry scones sitting on the dock at Burntside Lake in Ely, but it'll work for now. He went for his scan at 7 a.m. this morning. Greg brought him to the first floor. He loved getting out of his room. The post-op nurse brought him back up to his room and immediately he wants to go out.

Scott is currently confined to his room because of his low blood counts. If he wants to go out of the room for wagon rides, he has to wear a mask, but at this point he refuses and gets pretty upset. He looks SOOOO forward to those wagaon rides. Let's pray for good blood counts and no infections for him.

Laura told me that yesterday that Scott ate a cookie the size of his face. She wished she would have had the camera to take a picture for everyone to see. She said it was adorable. Laura received this morning a photo album with pictures of Scott in it. It's adorable - and Scott will LOVE paging through the book. I can see him already doing it - page by page. She's on her way up to the hospital now.

Ally is going to be visiting Scott this afternoon. She's been spending a few days with Britta and Luke and having a great time. She's been ice skating with them and doing lots of fun things.

Many people have asked what they can do. I asked Laura. One thing she recommended you could do is blood donations. Scott has received blood transfusions. Your donation of blood would help Scott and every other person out there that needs blood.

Also, another thing for children to do is to save the poptabs from pop cans for the Ronald McDonald House. History: The Ronald McDonald House began recycling pop tabs in 1987 at the instigation of VFW #295 and their Auxiliary in the Twin Cities. Since then, the pop tab program has raised over $700,000. To date, more than 400 tons of aluminum pop tabs have been recycled with the proceeds going to Ronald McDonald House Charities of the Upper Midwest.

How the Program Works: Save the tabs off cans of pop or other beverages and deliver them directly to the Ronald McDonald House in Minneapolis or to your local McDonald’s restaurant. The tabs are then collected by McDonald’s distributor, Perlman Rocque, and delivered to Great Western Recycling. Our friends at Great Western weigh the tabs to determine their value and then send the local Ronald McDonald House a check.

Why pop tabs and not the whole can? Pop tabs are high quality, pure aluminum and are more valuable than the can, which is a combination of aluminum and other alloys. Tabs are also easier to store and less messy than saving the whole can. We also recognize that other organizations use aluminum recycling as a way to raise money. All we want is the tab, so you can continue donating to more than one organization through your recycling.

Pop Tab Collection Tips: When collecting tabs for the Ronald McDonald House, there are a few things to remember that will make the program work well for everyone involved:
Collect your tabs in a container that you can get the tabs out of easily – bags, coffee cans plastic containers (but not milk jugs!!!)

Many smiles for you this new year - Scotty Boy. Everyone loves you!

"A smile on the face is a sign that the heart is at home." - Unknown

Thursday, December 30, 2004 9:12 AM CST

Hello, everyone. Scott had his bone scan on Tuesday. Grandpi Schaefer came to visit on Tuesday. Tuesday night was a rough night - post anesthesia - the nurses ended up taking him for a wagon ride at 3 a.m. so Laura could have a break.

Wednesday Scott was still a little cranky, but....he's, again, pole free. He ended up going for a walk outside the four corners of his room. He also rode a little trike that has been described up there as a bumper car. He
loved doing that. He would drive the little car and move his head back and forth - he loved it and many smiles came from his face. Then he went for a Radio Flyer wagon ride. He was out of his room for an hour and a half. Dr. Nelson, the oncology doc, did his exam in the little red wagon. Grandpi Schaefer came to visit also.

Ally stayed at Cousin Britta and Luke's house on Wednesday evening and was having fun. She may stay over again tonight. She may come home with a pet (fish) if the doctor okays it.

Greg took Scott Alan for another trike ride last night and wagon ride. He also rode the real trike where you have to pedal, which is good physical therapy for him to keep his little legs moving.

I spoke to Greg this morning - and the information they have received from the bone scan is that he does, unfortunately, have cancer in his left arm and right leg. Let's keep the prayers coming that tomorrow's MIBG scan will have good results and that Scott and his body will remain strong to rid his body of this horrible disease.

"With the new day comes new strength and new thoughts." - Eleanor Roosevelt - January 8, 1936

Tuesday, December 28, 2004 3:03 PM CST

Scott should be undergoing his bone scan as I write this message. Greg went up to stay with Scott this late a.m. and early p.m. while Laura went home to freshen up before the scan. Scotty went on three wagon rides today. Since he was up at 4:30 a.m., Laura snuck him down to the 2nd floor to see Big Bird (since no one was around). He really enjoys getting out of the room. Positive thoughts and prayers for positive results from the bone scan.

Laura and Greg really appreciate all the caring staff at Children's Hospital. They have everyone at their disposal - doctors, nurses, nursing assistants, social workers, child-life specialists. Scott has had excellent nurses - and caring nurses. Scott just smiles at the nurses and they melt.

Scott has been on the cell phone today calling his girlfriends letting them know he'll be home soon. Ally wants to have a BIG party when he gets home and invite everyone she knows. Greg tempered Ally and the invitation list by about 500 people. Only four are invited - the four of them! It will be good to have Scott back home in his own bed. It will be a relief not to have to drive back and forth every day to the hospital - and just to have the four of them together will be good.

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
Eleanor Roosevelt

Monday, December 27, 2004 7:02 PM CST

Laura has been at the hospital all day with Scott. My daughter, Kathryn, stayed with Allyson today while Greg went to work for a short day.

Scott is doing great. Hooray! He got his catheter out today. He's pole-free. When Laura called me, she was out in the hall with him in the wagon. She made him walk a while to keep his legs flexible. Today he had his hearing checked - to keep as a baseline. The physical therapist also came in and said that Scott has good flexibility in his legs, so that's good news.

Scott ate a good dinner. He ate his brownie first - (my kind of guy - eat the sweets first; vegetables last). Ally and Greg just came over to get the camera and they're headed up to the hospital now.

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." - Helen Keller

Sunday, December 26, 2004 10:44 PM CST

Pictures of Scott are in the photo album. Look for different pictures daily.

Greg came home this evening and reported that Scott sat up in bed for a long time today and played with his toys. Good news - his vital signs and blood work and lab work are all exactly where the doctors want them to be. Hooray! Keep the prayers coming, and they're hoping he'll be able to come home a day or so early. Things must be getting back to normal - Greg and Scott had pizza and grapes for dinner. Greg asked for a beer from food service - he got one - root beer! Tonight Scott's first round of chemotherapy is over. He should start to feel much better, as the tumor won't be pressing on his little body.

On the unfortunate side of things, Allyson woke up at 4:30 a.m. this morning with the stomach flu and fever. Laura spent the day with her. Kathryn and I stayed with her this evening for a little bit while Greg and Laura played tag team. She had some warm Sprite to drink and a little bit of Saltine crackers. We watched Mary Poppins with her this evening - spoon full of sugar and lots of prayers will make her feel better. She did give her dad a smile when he came home. Apparently the flu is going around, as she was supposed to spend the day with cousins Britta and Luke, and unfortunately they're sick too. Let's hope everyone gets back on the mend.

Greg decided to put me in charge of uploading pictures. It's tough to upload pictures when all you have is the Spanish manual. Hola, senorita, I need help! I struggled through it. I hope I can do the same tomorrow night!

"Perserverance is not a long race; it is many short races one after another." - Walter Elliott

Saturday, December 25, 2004 9:02 PM CST

Scott had a great day today. He loved his gifts he receiged from Santa. He received a hammer that makes a sound and he loves hitting things with it. He also got a gift that you can attach things too - kind of like Legos. It has a container that he puts them all in, then takes them all out, puts them in, takes them out. Ally received a cat that talks to you from Santa. Ally informed me that they sang happy birthday to Jesus last night. Scott ate a good breakfast - blueberry muffin and pancakes. Scott went for two wagon rides today. He also went down to the playroom and shot some hoops with Greg. He was soooo mad when he had to go back to his room.

Scott will start his last dose of chemotherapy (Round 1). Each dose of chemotherapy takes 24 hours. It is given to him through his main line (also called a Hickman). It's a permanent intravenous tube that will be used for the entire duration of his therapy. It's used for blood tests, medications, chemotherapy, blood products, etc. After his first round, he will be off chemotherapy for three weeks.

On Decmeber 28 Scott will undergo a bone scan to determine where in the bones the neuroblastoma is. In involves injecting a small amount of dye into a vein, allowing about two hours for the dye to distribute itself through the body and then having the child lie still for the pictures. Because he has to lie still, he will be sedated.

On December 30 Scott will be injected with a liquid that is injected into the vein and taken up by neuroblastoma cells. On December 31, he will undergo MIBG - stands for MetalodoBenzylGuanidine. The substance lights up inside the tumor cells so that a nuclear scan can detect them. MIBG is harmless to all other cells in the body. It is considered a radioactive substance, but is given in such a small amount that Scott will receive less radition from MIBG than from an X ray. The substance is naturally excreted by the body, and no special precautions are necessary.

Laura and Greg appreciate all the guestbook comments. I send them down to the hospital with either Greg or Laura, whoever is at home in the morning. Greg is staying with Scott tonight (Laura and Greg switch off). They appreciate all your prayers - keep them coming.

"Everyone prays in their own language, and there is no language that God does not understand." ~ Duke Ellington

Friday, December 24, 2004 3:25 PM CST

Laura informed me of more information today concerning Scott. Scott's primary tumor is in the adrenal gland. He also has lesions on his spinal cord. Scott went through a CT scan and MRI scan on Tuesday, December 21. Scott then underwent a biopsy on Wednesday, December 22. They did a bone marrow biopsy also. He is currently receiving treatment to shrink the tumor. He will be feeling much better after the tumor shrinks so it's not pressing so much on the various organs in the body. He will undergo another test later next week. The cause of neuroblastoma is unknown, as with most cancers.

Allyson, Greg, Laura, and Scott will be together today. They are all going to stay in the hospital tonight. Allyson has decorated Scott's window with pictures. Scott has his comfort items around him - his blanket, favorite Rudolph Reindeer, and stuff animals. Tonight they are going to open presents. Allyson also has a small tree to set up for Scott. The floor that they are on has a nice playroom for Allyson. It is equipped with a PacMan game, foosball table, tons of books to read, small basketball hoop, balls, trikes, tables to sit and paint at. It is definitely set up for siblings.

The family is able to accept mylar balloons only (no latex).

"Every day is a gift!"

Thursday, December 23, 2004 10:41 PM CST

Hi, my name is Nancy Meyer, and I'm a neighbor to Greg, Laura, Allyson, and Scott. I've started this page, with the blessing of Laura and Greg, for the family so that information can get to and from them.

Scott has been diagnosed with neuroblastoma. Treatment has started for Scotty tonight (chemotherapy). Neuroblastoma is a solid tumor or cancer. It occurs in the immature cells, called neuroblasts, of the sympathetic nervous system. The sympathetic nervous system is responsible for involuntary actions of the body, such as blushing, increasing heart rate, and dilating the pupils of the eye.

The majority of tumors (65%) are located in the abdomen, often in one of the two adrenal glands. However, primary tumors can occur anywhere in the body. Other common sites are the chest, neck or pelvis. The disease often spreads from its "primary" location to the chest, bones and bone marrow. In fact, most cases have already spread at the time of diagnosis.

There are approximately 650 new cases in the US annually. This represents 7.5% of all childhood cancers. It is most commonly diagnosed between 17 months and 2 years of age.

Laura and Greg wanted everyone to know:

The hospital requests no flowers or balloons. If you would like to send something to Scott, he would love a picture of you to hang on his wall. He loves books, especially any kind of book on trains or books that you have to open and close and do things with (sorry, not a good description - something like Pat the Bunny). You can send all items to Scott's home.

At this time the family is not taking visitors due to Scott's compromised immune system. They want to make sure that he stays healthy and on the path to recovery.

Also at this time there have been several people who have graciously filled their refrigerator up, so food is in the house. You can e-mail me personally at nancy.meyer@captionminnesota.com and I'll get a food chain started for when Scott is back at home.

Scott will stay in the hospital until at least New Year's Day. Today Allyson went up to visit Scott. He loved seeing Allyson, and it was the best medicine of the day. Ally brought up Scott's favorite videotape - Baby Bach. That was a hit with Scott. He gave his usual verbal response when he saw the video. Laura took Scott today for a ride in the red wagon around the 8th floor.

Laura and Greg ask that you keep them in your thoughts and prayers - and make sure you sign the guest book. They'd love to read the guest book.

Thursday, December 23, 2004 9:27 AM CST

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