Journal History

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Friday, March 4, 2005 10:58 AM CST

Hello to all

I wanted to do a quick update to let all of you know that our 3 month check up was yesterday and ALL IS CLEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank you God and Thank you to all that continue to pray for us and the Hunter family
And of course Little Miss Emma Blom.....
Things are slowly improving..
Gotta go, it's way to nice outside to be sittin at this computer.
Lots of love and PLEASE hug your kids and remember how lucky you are!!!
Dawn Joe Brandon and Justin
OXOXOXOXOXOXOXOXOXO

Monday, February 21, 2005 5:18 PM CST

Dear Family and friends,


It's been so long that I'm unsure where to start. I just realized that I last left off at Christmas and I shared our day with you and I also shared our vacation plans. Well as you have figured out we have left and came back from our trip.
I must say if you want endless sun and relaxation, Cozumel mexico is the place to go. Words can't really explain what an awsome sight it was to see ALL the boys having the time of their lives on the beach and in the ocean, and the pool by the hotel. Along with a ton of snorkeling, catching little fish, hermet crabs, and lizards the boy's did'nt stop running, playing football, volleyball and kayaking. The flight went well and quick.
Other than the fact that I came down with a severe ear, that became so horrible that the infection went into my jaw and teeth, and I needed to have the hotel call the hospital and have a doctor come to see me (STAT). I really did have a good time. I don't think that there was one day that I felt good. So I'm wondering if I could go back and try it again?????????? Maybe next year.
I heard that the weather here was in the 50's, which was good for our friend Amy, she was the one that was stuck taking care of the dog, cats, horses and Joes beloved ducks.
Our lives are going back to normal, things have just flowin buy, ever since X-mas, we have been getting ready for the trip, and now theres finally some down time.
I took Justin in to be evaluated by a speech therapist for the earliy childhood development class. There's more to come with all of that, but I think Justin's over qualified for the program.
Brandon is finally involved in basketball on Saturdays and he is so thrilled about that, he is actually playing in real games!!!
Justin's next check up is coming up also........ The date is set for march 3ed, he will need blood work, a 24 hour uraine collection and a CT scan, so I will update after I get those results.
I'm sure most of you already know... Sarah Hunter ( she and Justin were being treated for neuroblastoma at the same time) was admitted in the hospital for her stem cell transplant on the 31st of Jan. happily to say she is doing awsome!!!!! You can check her progess on her website, link on bottom. Please continue to pray for them.

It's taken me a little bit to figure out the words to relay the next bit of news....... Little Emma Blom theres nothing left that the doctors can do.... She has been sent home to rest with her parents and her brother and other family. Please pray for them also.

time to sign off
god bless thanks for checkin on us.
Please remember to hug your kids!!!!!
All our love
Dawn

Monday, December 27, 2004 11:06 AM CST

Dear Family and Friends,

MERRY CHRISTMAS

I hope all of you had a wonderful and safe holiday, and I hope that all of your Christmas wishes came true!!!

I realize that I don't have to remind any of you what the day means to us. And although we had the very best X-mas that I can remember, it was still a tough day to deal with, even my Dad was a little teary eyed all day.

My family had always celebrated on Christmas eve. So this year we rented a conference room at a local hotel, where we set up a bunch of food and had a couple of cocktails and the "boy's" (there's 7 grandsons, no girls!)got to swim all day and half the night. No big gift exchange, just all kinds of love. As I sat with my family watching little Justin swim, we were all just amazed by him. The only way that you can tell that the boy has ever had any medical problem is the huge scar that lays across his belly, and the three on his chest left from his hickmen. We could'nt believe that he was the same little boy that had gone to hell and then was brought back. He truely is our angel.

I thought that my memories and nightmares were finally beginning to fade, they have begun to flood back. As all of you cancer parents go through when it's Anniversary time. Justin's just happens to fall on X-mas. My point is you remember it all like it just happened yesterday, okay Justin had surgery two years ago yesterday and two years ago was when we got the news that he had stage four high risk neuroblastoma, I remember where we were, every time we got life changing news from the 25th of Dec. until now.

I must say we do have alot to look forward to, Justin needs no testing until Feb. I called and canceled his MIBG scan, I simply told the doctors that I didn't want to put him trough that any more.
From now on out Justin will only need CT scans, blood work, and urine testing. Provided that all goes well of course.

My parents have informed us that they will be taking all of us on a trip all expenses paid. So we ALL (my brothers, their wives and kids, my sister and her son, and my parents) leave for Cozmual mexico on Febuary 4th and we return on the 11th. Free food and drinks!!
So we have that to look forward to. I can't wait to see all the boy's running around on the beach and playing in the ocean.
I want to thank all of you for checkin in on us and our family. And I want to thank you for the prayers. We are such a blessed family and I feel that we are so lucky. The time that we have been able to spend together is priceless.
I hope that all of you have a Happy New Year and please keep us in your prayers......

God Bless.
Lots of love
and hug your kids
Dawn

Tuesday, November 23, 2004 7:01 AM CST

Dearest Friends and Family,
The wonderful news came on Friday, I broke down and called Justins Doctor, Dr. Sondel.
Justin remains cancer free..... I once again just sat down and cried, had my little talkin to God and then took the boy's out to dinner.
We did end up going to the Dells last week, My mom and I and the boy's stayed at the Kalahari hotel and Resort. It by far was the best time that we have had in months!! We went to Ho Chunk Casino (they have day care now, the boy's LOVE it), and I ended up winning $400.00, so that payed for the trip and then some. The water park was awsome, and very relaxing.
Now back to Justin and his tests, He had a CT scan, a bone marrow Bio, and blood work done, on Dec. 16th he will have an MIBG injection and scan (neuroblastoma cells, could show up in this scan). From here on out, Justin will ONLY need A CT scan, and blood work. That will be every 3 months (so Feb. is the next appt.) until July, and then testing will go to every six months, provided that all remains fine. Our prayers are being answered each and every day.

I have tried to put it in my head that all will be fine and Justin will someday become an very old man. But as of now the fear is still to great and I think that it's because the doctors have yet to tell me so.
Sometimes I live in such fear that I actually forget to live. Sometimes I have such depression and panic attacks that I can't even think straight. Sometimes I actually can get 5 hours of sleep at night, because most the time I just lay there staring at my son and praying to God not to take him from us (yes he still is sleeping with me).
But most the time I'm thankful.... I'm thankful for each and everyday that we have to be able to be together. Most of the time I'm proud, that I have the two most wonderful, bright, loving, caring and strong boy's that I have yet to meet. Most of the time I try to remember to smile and to take one day at a time.

I'm trying to set some goals for me and for not so little anymore, Justin (he's gained 15 pounds this past year).
First I'm gonna try to get him to go to school. Brandons school has an early childhood development program, I've talked to the director and Justin does qualify.
Second I'm gonna try to get Justin in his own bed!
Third, I just might get a job.
Yes, baby steps, I know.

Just wanted to say thanks to all of you! Thanks for listenin and Thank you for prayin.
I hope all is well with all of you
Have a Very HAPPY THANKSGIVING!!!!!!!!!!!!!
Lots of love and god bless,
Dawn
P.S. Don't forget... Hug your kids

Saturday, November 13, 2004 12:22 AM CST

Dear Family and friends

I hope all is good with all of you....
Once again sorry for the delay in updating.
Good News.....I wanted all of you to know that Joes brother, John's test results came back fine. The CT scan was misread and they found that out after the MRI results. But John is still having massive headaches, so he is seeing other doctors.

Bad News...... I'm sure most of you already know, Sarah has relapsed. Please pray for her and her family. They have a very long road ahead of them, Please feel free to check on them through their wedsite.

As for our family... We are waiting for the bone marrow results and Justin's CT scan will be on Monday afternoon. Justin's Dr. will be out of town until the later part of next week..
The boy's and I will be taking off for the Wisconsin Dells on tuesday and we won't be returning until Thursday. I'm in such fear that Justin's test won't be okay, that I need to leave with the boy's and go for a mini vacation.

I'll keep you updated on the test results, Please Pray for our little Justin!!!!
Thank you
god bless
Dawn

Sunday, November 7, 2004 9:35 AM CST

Dear Family and Friends,
I would first like to take the time to thank all of you for your prayers, I would also like to thank you for checking in on us and my family.....
I'm sorry that I hav'nt updated sooner, but we have been busy. We celebrated Justins 4th birthday on Oct. 21st, yes Justin is 4. He is getting so big and so smart, I can't keep up with him. We had a nice party for him, yes, we had the balloons and everything. The week of his birthday he kept asking me if it was "his" Christmas yet??? Brandon said that it was the best birthday ever. He does'nt realize how very true that is.
I'm sitting here in complete shock, I'll have you know, I just read Sara's web site (address or Link is on the bottom of this page) she had her 3 month check up and they found a tumor, they have removed the tumor and they are doing a biopsy to find out if it's neuroblastoma again.
I have become very close to their family and I can barely even think right now.
Do you ever have those days that you just don't think that you can take much more?????
I did'nt realize have very easy getting through treatment was....... It's these last six months that have drained me. I hate Cancer.... I hate it. I hate it.
Joe's little brother John (33) Has been having head aches for the last 3 weeks, he went to the doctor last Wed. got a call that same night saying that they have found a mass in his brain and that he needs to have a MRI done tomarrow morning, so Joe is going to drive up there tonight so he can hang out with the family.
Justins next round of testing starts this week.
Please keep praying for us, and for Jackie, Don, Sara and Catie Hunter.
I can't think right now, I need to go and hang out with my kids.
I'll update more later,
God bless
Dawn

Monday, October 11, 2004 5:09 PM CDT

Heaven Holds The Key

How do we prepare ourselfs
To let a loved one go??
To lift their spirt up to God,
When we still need them so??

The hardest part of letting go,
Is selfish, some might say...
For heaven holds the key to life;
Our loved one's home to stay.

Our Dear Kyle's suffering ended on Sat. night, with his family by his side!
We would like to thank all of you for your really kind words and all of your prayers. I know that it's hard to believe, but it does help to know that we're not alone at this difficult time.


Do not stand at my grave and
weep.
I am not there, I do not sleep.

I am a thousand winds that blow,
I am the diamonds glints on the snow,
I am the sunlight on the ripened grain,
I am the gentle autumn's rain.
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight,
I am the soft stars that shine at night:
Do not stand at my grave and cry,
I am not there, I did not die.

This is a poam that I read when I was a little girl at my Grandpa's funeral....

God bless

Tuesday, October 5, 2004 10:14 AM CDT

I have put off updating for as long as I can, I'm still unsure how to put it all in words..

Kyle's doctors have given up, his tests showed last Thursday that the cancer is growing faster then ever....
At the time Kyle still believes that he can beat this


The doctors have explained to Kyle and his parents that the tumor has and will continue to grow around his arteries causing them to burst, which will then cause Kyle to bleed to death

WHY??????????????
He's only 14...

They say he may have 2 weeks to live

Please continue to pray for Kyle and Our family

Thursday, September 16, 2004 9:41 AM CDT

Dear Family and friends
Do you ever have this feeling that your stomach is in 1000 knots???? Mine has been that way for over a week, I received some awful news. No it's not about Justin.... It's about my cousin's son Kyle. Do you remember him??? I told you about him not long after I started this journal. Kyle (age 14) was diagnosed with a Wilms tumor a week before Justin was diagnosed with neuroblastoma (god I hate that word). Kyle received treatment and then relapsed in Oct. of last year, he then was treated again and was all clear last Dec. He has had testing every three months (all clear) and then in July the doctors had found that the tumor had come back..... It has surrounded his other kidney (he lost the left one when the tumor was first found), and the tumor has also grown in his pelvic area so large that it broke his bone. They had started treatment right away.... But the tumors just keep growing now in the end of Aug. the tumors have spread to over 50yle's lungs. His mother and father were told that Kyle could go home and live the next 30 days in peace without treatment, or he could be treated and they still won't know the outcome. Well when they asked their son what he wanted, he said "I swear, I'm going to beat this thing!". So my cousin has contacted St. Judes hospital in Tenn. There's a doctor there that said that he could help, he can't promise anything, but it was what they needed to hear.... But when it came time to fly Kyle there, they realized that you can't be flown in a plane if you can't sit up at least on a 50 degree angle.... Kyle can't because of his broken pelvic bone. Which turned out to be a good thing because Kyle never would have made it through the flight because of his lung compasity and he was just to weak. So as of last week Kyle is being treated from the doctor at St. Judes, but he's just doing it in Green Bay. This is a very unusual for the Wilms Tumor to be acting this way... It started at like a stage one and now the doctors can't even stage it. Kyle has been through 5 days of chemo (last week), he then had 2 days off and now he's on his next five day round of treatment he will go without treatment for two weeks, which he will be tested, and then he'll go for five more days and so on and so on.



So I'm asking another favor..............
Will you all keep Kyle in your prayers and his mother Kim and his father Neil. I can't even begin to imagine what they are going through!!!
And also please please realize how very lucky you all are!
I will keep you updated.
God bless, hug your kids!!!
Lots of love
Dawn

Thursday, August 26, 2004 9:22 AM CDT

Hello to all
This has been a rough couple of months for me, I think that it all started with the relay for life walk. Justin was a co chair and so we had like three interviews, so that brought up alot of old memories, some good, but most not so good. I could'nt help but panic everytime I thought about the relaps rate for stage four neuroblastoma, and I thought about it alot. The relay it self went so good, what an event, if you have never been involved in one you should, it's very inspiring. Our team raised almost $3500.00 which was great for the first time out. Joe had a lot of support from his family (THANK YOU GUYS, buy the way), they drove five hours to walk for 18 hours and then had to drive back home. Joes brother and sister in law even camped out with me at the park. That night at the relay was the first night EVER that I spent away from Justin, I think that I got 2 hours of sleep... There's no way I could have slept without him anyway.
The boy's and I have been taking some mini trips, I have a cousin that lives near Shawano (3 hours north), so we have gone up there to visit a few times, she (my cousin) lives in the house that my grama used to live in, it's also the place where I used to spend my summers. It was nice to see my boy's playin in the same house that I used to play in...... We have also taken a few trips to Richland Center, my parents own 120 acres of hunting land, and they put a little log cabin bunk house on the land last year, it has no phone or electic, but the boy's and I had the time of our lives, as I'm sure you know the weather could have been a little nicer, but it's just nice to get away.
We also made it to the State Fair this year (it rained then too) with my brother and his two kids, and that was also a blast for all of us, the boy's went on every ride they could. My sister and I and our boy's also made it to the Make a Wishes 20th birthday party which was held at the Brewer Stadium, they had a tail gate party and then we went to the game. I ended up winning a raffle prize basket (spent $40.00) with two signed Packer Jerserys, an autographed picture and a autographed football (signed by Henderson and Walker)!!! Then mommy had a few to many beers, but honestly we had the time of our lives!!! What a break!!!!
This Sat. is Brandons 8th birthday, and it just so happens that the people from Make a Wish called to see if we would like to come into West Allis (the state fair park) and go to a Hot Rod Car Show, they want Justin (and Brandon) to be a Judge! So we are looking forward to that.
I'm thinking about taking the boys up to the hotel tomarrow night so they can swim and relax.

Justin had his last round of testing done on Aug. 19th, he had blood work done (I won't even share the whole I.V. nightmare with you!!!), A cat scan and a bone marrow bio done. The doctor called on Tues. and told me that all was fine, but the L.A. tests won't be done for months, so we'll just have to wait. I wasn't home when the Dr. called, so when I got home and got the message, I actually sat done and just cried. Good tears for once!
Not much else, Brandon starts school on Wed. Then it's time for some fall cleaning, there's so much I've put off, but hey it's not going anywhere!
Gonna go now, Justin wants to play on the computer, playhouse Disney, this darn weather the kids don't even want to go outside.
Thank all of you for the Prayers, someone sure is listening!!!!
GOD BLESS
love,
Dawn

Monday, June 14, 2004 3:16 PM CDT

Dear Family and friends
I just realized that it's been a long time since I have updated, it's funny how this web site slips your mind when there's actually a chance to live and have a summer. The updates used to be easy because this was all I had as an "out", from all the long day's stuck in a hospital room, and at that time I was filled with so much info I thought that my mind would explode. Yet my mind is still very full of thoughts, but not like it was before. There seems to be a peace at times, there seems to be more of a freedom that I never thought that I would have again, and yes there are times when I feel like I have a normal life, and I do forget how truely blessed my family and I are, there are times that I forget to thank god for everyday that we are together as a family and that we are at home and not in the hospital. But then it's easy to remember what we were doing last year at this time and where we spent our summer. It's easy to remember the suffering our little boy went through and the pain that our big boy felt because our world was flipped upside down..... It's easy to remember how jealous I felt towards the rest of the world, because they had normal lives and I was jealous because summer plans could be made and their childern could go out side and get bug bites and swim in a pool or go fishing at a lake. We never had that chance...
So this summer we are trying to make it the best ever, the most memorable, not by doing anything fancy..... But by just being together!!!
So I want all of you to know that I may some times tuck away all that I have been through and you may never see all the worry that I still hold onto, every minute of the day, it does'nt mean that it's not there. I also what you to know that it doesnt get any easier with time, yes we are grateful that we have more time with our little Justin, but our fight isnt over. And thats why we are thankful for everyday and thats why we still take one day at a time!!!!!


So please remember and pray for all the little kids that are fighting for a "normal" life again, please pray for all the little kids that are going through treatment and suffering right now and please pray for their parents, that they stay strong and can make it themselfs trough the long days. PLEASE remember how very lucky you are!!!!

So I hope that all of you are having a wonderful summer and that everyday is a special one, Please try to remember....... You never know what can happen!
Now for Justins tests.....
The bone marrow bio was clear as was the MIDG. Very great news. We are done seeing any Doctors until the end of Aug. So we are going to live it up and party all summer, no bed time, no rules, just summer FUN, FUN, FUN!!!!!!
take care thanks for checkin in. GOD BLESS
Lots of love and hug your kids.
OXOXOXOXO
Dawn

Tuesday, May 4, 2004 11:18 AM CDT

Dear Family and friends,
Hello to all, and I hope all is well with all of you!!!!
So much has been going on!!!
I'm quite unsure where to start. A few weeks ago we got Justins bone scan and his ct-scan done, and last Fri. I got the great news that they were all fine. That leaves Justin with two more tests to get done, his bone marrow and his MIBG, they are planned for the end of this month.
And I'm sure the next bit of news that your all waiting for is "our" make a wish trip.
Oh my gosh, there truely are not words..... We chose to do the land and sea, it turned out to be Thurs. thru Sunday afternoon at Disney world, and then Sun. thru Thurs at sea.
So we got to Florida, then to our hotel around 2:00p.m. and we hung out there for the rest of the day and night. The boys just swam in the pool and relaxed (it was a long day we left the house by limo at 3:45a.m.!!)
Then on Friday we went to the great Magic Kingdom, and because Justin had his "magic" Make a Wish button on we were treated like royalty. It was all just amazing!!! The boy's got alot of autographs, alot of pictures and we did go on some rides.
Saturday we went to MGM, and that was neat also, alot more relaxing. We ended up seeing the Indiana Jones stunt show, the usher walked us right up to the front row to seat us and as we were waiting the girl came back and told my dad that "Indie" wanted to meet the boy's after the show, so we should stick around. Well the boy's thought the show was okay, they had'nt seen the movies yet so they were'nt really sure what was going on (yes, since we've been home we have rented and watched them!!) during the show and they had no idea who Indiana Jones was!!!! So when it came to the end and waiting around to meet this guy the boys wanted to go. And I was even like, whats one more autograph???? But dad and Joe insisted on staying.
The boy's were last in line and "Indie" finally got to them, and he pick up this towel off the ground and under the towel was his hat, one that he said he had woren thru many, many shows and he thought that Justin should have it!!!! It was signed and everything!!! I burst into tears (as I had done the entire day before!!!!) and gave him the biggest hug. I don't think those people have any idea the impact that they can make!!!
Other than that we went on more rides, saw a few more shows got more autographs, and the went back to the hotel and swam. Oh yeah and we packed!
Our last day was spent at animal Kingdom. What an awsome place, you all know the boy's and their total love of animals, so you know that they were in complete heaven!
We went on the Safari, the big rafting ride, Brandon went on his first rollorcoaster ever with Grampa and Joey, while Gram, Justin and I walked around and tried to soak it all in.
Like I said, I don't have the words.
We jumped on the bus and away we were to the ship.
What a sight that was!!!!! None of us have ever been on a cruise, it was simply breathtaking!
We were also spoiled on the ship. We relaxed by the pool, went to Disney's privately owned island called Castaway Cay, for a day, we ate awsome food, and saw wonderful shows every night!!!
Although the trip was fun Joe and Justin were VERY ready to come home, Brandon and I were now crying because we wanted to stay!!! I bagged them to give me a job on the ship, but they said they didnt have any openings. Sounded kind of fishy to me, so I had to get off the boat and come back to the real world.
I must say that trip was so much more then what I ever could of hoped or wished for!!!
Thank you so much Make a Wish, you will never realize how much you have touched our hearts or our lives, FOREVER.

And now that we are back in the real world. I'm wondering if I could ask for a little favor from all of you.
We have our towns Relay for Life walk coming up on July 9th, for those of you that don't know about this, it's a walk to raise money to find a cure for cancer. The point is that cancer never stops, never sleeps, but also neither does the need or the fight for the cure. We have a team started and our name is, Camp Luck-e Stars. I don't think I need to explain! Oh and also they have asked that Justin be an co chair honorary member, so we get to say a few words about how cancer has touched our lives.
Now to my point, we need money!!!!! I would like to be the biggest money making team in Lake Mills, so I need help from all of you!!!
You can make checks out to the ACS (American Cancer Society).
My address is
W6487 Hwy B
Jefferson, WI. 53549
Thank you all so much!!!!
And also, if any of you would like to come and walk with us to show your support that way, that would mean just as much!!! For those of you that may have forgotten, the date of the relay is only a few days short of Justin's year anniversary of his transplant.... So it's not only about the relay, it's about overcoming so much, and remembering.
I should get going Justin needs lunch!
God bless and please hug your kids, really, really tight!
Dawn

Monday, April 12, 2004 4:32 PM CDT

Dear Family and friends,
Hello to all!!!!!
I wanted to keep all of you updated on what happened with Justins tests.
Well he did'nt start them last week. I ended up taking him to the local ER on Sunday the 4th. He had this horrible cold, with a really bad cough and then he ended up getting a fever of 100.5 (not real bad) and I then realized that he was'nt going to be able to fight the cold without meds!!! So we took him in and on top of the cold he had an ear infection in both ears!!!!
So the hospital WON'T sedate when a child has a cold, so they had to reschedule all his tests, they will now start on this Friday. And the only test's that they can do then will be the bone scan and the ct scan. I guess they can't do the bone marrow test on a Friday, so now we have to wait on that one. So things are a little messed up, but I will be sure to let you know how it all turns out.
We finally got word from our wish granters, from the Make A Wish. They brought over our packet last week. Oh my gosh, I actually started to cry!!! It was a very over wheming feeling, as happy one is to be able to have wish granted, you then realize what it all means.....
Let me tell you what it said on the letter we got from the make a wish when we applied....
It said, Weclome to the Make-A -Wish Foundation of WI. Justin has been medically qualified to have a wish granted through our foundation. We grant wishes to childern who are living with a life-threatening medical condition....
Now when I read that letter back in Nov. I honestly sat down and just cried, I couldnt believe that they were talking about our son..... I had almost forgotten that his condition was still life-threatening!!!
I guess it will forever be an difficult thing to hear!
So anyways..... The tears that I had last week, were of pure joy!!!! Just joy that we are all still together, and that we are all so healthy and happy, and we are almost able to dream again, of tomarrow and the next 80 years!!! They say it all takes time and everyday I am reminded of how lucky I am!!!! They are the easiest words to say and to type, Please know that I feel it from the bottom of my heart.
I should send off
It's time to feed the boys!!!
All our love, thanks for visiting
God bless and please hug your kids.
Dawn

Saturday, April 3, 2004 12:49 AM CST

Dear Family and friends,
Hello to all of you!!!
I hope all is well with your family's and that your looking forward to spring as much as we are. Although with the warm weather it sure seems like all that outside work (along with the inside house stuff) never gets done. For those of you that don't know, we are living at the old family farm where my dad grew up, it was turned into a duplex many, many years ago. My dad bought the house from my grandparents many years ago, so my great aunt and uncle rented the bottom half and my grandparents rented the top. After my grandpa died, gramma was still well enough to stay up stairs on her own, and of course it helped that auntie and uncle lived on the bottom, so nobody was really ever alone. Well a few years back, actually it was right after Joe and I got married (almost 4 years), our uncle was having some belly pain my dad took him to the hospital, they did some tests and realized that he had an aneurism, as the doctors were "preping" him for surgry they went and told auntie about the diagnosis, and that the outcome did'nt look good. Right on the spot auntie had a heartattack and she passed away, and uncle never made it out of surgery. They both passed away on the same day, sounds strange but neither one could imagine live without one another, and those that knew them knew that.
So to try to shorten the story, we sold our house in town, and moved out here to stay by Gram....
Gram passed away a few months before Justins cancer was found....
I never in a millon years understood how hard that women worked around this place..... There are about seven different flower gardens, and two veggie gardens, plus about 12 rasberry bushes. Oh my gosh, those of you that know me..... You know that I have NO experence in a garden, and that weed pulling stuff is not an easy job, I told Joe he needs to pave it all. And of course I want to keep it looking nice like Auntie, Uncle and Gram, at least last year I had an excuse, now I'm just plain lost....
So those of you that have gardens of any type, I give you so much credit, it looks so pretty, which makes it look easy, but its not!!!!
So thats how I've been spending my time. And I've been spending alot of time just hanging out with the boy's and we've been trying to touch base with friends that we hav'nt seen a whole lot in the last year.
Brandon is on spring break this week, so it'll be nice just hanging out. I could'nt really plan anything because Justin starts the next round of testing this coming Wed., which sucks because it's the middle of the week. And then the following week we'll spend 4 days up at the hospital. And on that note, Justin is now done with all treatment!!!!!! The nasty accutane is now done... We're a little nervous now that there's nothing that is fighting the cancer off (if there is any) and I feel kinda like Justin is just a sitting duck. And yes I do realize that the kids poor body can't take much more of the treatment, but Im so scarred..
Things are great right now and thats all that matters. One day at a time, Geez that sure it easy to forget.
Well I hope all of you have a great Easter!!!!
I think back to last year and I remember how we spent it in the hospital!!!! So this year will be extra special.
God bless all of you. Take care, and Please hug your Kids!!
Lots of love,
Dawn

Sunday, March 21, 2004 5:30 PM CST

Hello to all of you,
I just wanted to give a quick up date, everything went fine with Justin's check up, we are now only having to go back once every 3 months for a check up and blood work.... Along with the scans they will still be once every 3 months, for the next year I guess....
I also wanted to let all of you know that we have been having soooo much trouble with our internet service (one BIG reason for the lack of up dates) that we are changing services on this Tues. so don't send any e-mails to that other address anymore. I don't have the new address but I will update that on Wed.

We suffered one more big loss in our family on Monday of last week... Brandons dog died. I took her to the vet to have her spayed and while she was "under" she had a heart attack. Can you believe it????? I think that I was in shock all last week, actually all of us are still in shock. She was a 6 month old american bull dog, against the doctors orders of getting any pets so soon after Justins transplant,we brought "Roxy" home anyway, Brandon really wanted her, and we thought that it would be nice to make it about Brandon for once..... She really fit into our lives perfectly!!!!!

Yes, I do realize that life could be alot worse for us right now and believe me I do count my blessings, but come on already!!!! I wish this dark cloud would leave all of us alone!!!!

Hope all of you are doing fine, Please hug your kids (and dogs!)
God bless,
Dawn

Tuesday, March 9, 2004 8:11 AM CST

Dearest Family and friends,
Hello to all of you!!! I saw my first robin yesterday, you all know what that means... Spring is on the way!!!!! I can't believe how fast these three months have gone by, I'm really not complaining a bit. We're all looking forward to a nice Spring and maybe a normal Summer. I'm sure your all wondering how the trip to Texas went.... It was awesome!!! The boys did great on the plane, Brandon was a little scared at first, He sat by Gramma which made it all better, although she was amazed at what a chatter box he has become and all the questions that a seven year old has. After the first take off Brandon was'nt to fearfull any more. Justin just sat back and said WEEEEE. We were looking for deer and all other types of wildlife from the plane, no we werent looking for cars,fields, buildings or swimming pools..... We were looking for DEER, for those of you who know Justin will not be surprised. Once down there we had a blast, although it was cloudy and quite foggy we still had weather in the 80's. We went on an unsuccessful Dolphin Watch, which basically was a 1 1/2 hour boat trip around in the bay, they did drag a net behind the boat and caught some blow fish (like on Nemo), jellyfish, some shrimp and a few crabs. The boys loved watching them, Joe had to peel Justin away from the tank that they were in so we could leave. We also went to a sea turtle rescue place, that also was a big hit. They also have a wonderful zoo in Brownsville, we spent about 4 hours there, it was the cleanest, nicest zoo I have ever seen. Justin did great, we rarely had to carry him, he wanted to do it all by himself, he kept running from animal to animal saying look mommy look!!!! Brandon has now become a big time photographer, meaning he took about 100 pictures at the zoo and then some.... Can't wait to see them!!!! I must say though, the best part of the trip was just hanging out with Joes family (and mine of course), they are such wonderful people. One can go months without seeing them, and when were all back together it's like you've never missed a day. Things are so relaxed and natural, and to see Joes face when he's hanging out with his brothers and his dad is just priceless. I also must admit not once did I think about looseing my little boy..... The past year was not even a thought..... I guess thats what Vacation is all about, getting away from reality.
This thursday is our monthy visit for blood work and to see Dr. Sondel. And then next Wed. is when we start the final round of the accutane, 14 more days of that drug and then were done with ALL treatment. A very scarry realization. April 9th is the start of the next round of Justins scans, bone marrow bio, and so on.
Then on April 22nd we leave for Disney, Justins Make a Wish trip, we'll be doing the land and sea. So it'll be 3 days at disney world and then 4 days on the disney cruise. I don't have very many other details, for the make a wish people hav'nt been in contact... My parents are also taggin along for that one.... I don't know how any of us will keep up with those two boys, after sittin around in a hospital and at home (cuz we couldnt go outside even if we wanted to cuz of germs) on our butts for a year, it should be very interesting!!! I'm gonna need a Vac. after this one....
Well I'll try to get some new pictures posted and I'll keep all of you better informed too... Sorry about the slacking!!!
Please enjoy the great weather, please hug your kids and most of all live every day the the fullest!
God bless and lots of love
Dawn

Wednesday, February 18, 2004 7:01 AM CST

Dear Family and Friends,
Hello to all of you! I hope that all is well. Looks like were gonna have a break in all that cold weather. Thank goodness! I have such cabin fever that its really starting to make me sad.
Besides all of that, things could'nt be better. We went and saw Justins doctor last week thurs. it was Justins monthly visit and he needed blood work done. It was nice to see his primary doctor, Dr. Sondel, SOMETIMES he does make us feel at ease, but then again I told him from the beginning that I want to hear the worst of it as far as Justins cancer was concerned. Well Justins blood work is even better then what it was last month, and were starting round five of the accutane this morning. His treatment is coming to an end very soon.
For those of you that don't know we have planned a trip to go to Texas to visit Joes Dad and step mom Gwen. So we leave for South Padre Island next Thurs. This is a much needed trip for all of us and it's turning out to be quite the gathering there's prob. about 20 of us going between Joes family and mine. We are a little shell shocked to be taking Justin so far away but his doctors reasurred us that all will be fine, but if not there are some really good hospitals down there in Texas. So with that said, I need to start packing, I really only know how to pack for the hospital, and at least there, they had everything that I would forget... Should be interesting.
Joe started a new job last week, he's doing the same thing just at a different company, this one is smaller, closer to home and the hospital and there's more chance of an advancement in the future, which is good. So things are going okay, but I think that he is looking forward to the vacation as well.
Today I'm taking justin to get his first hair cut in over a year. It won't even be much of a cut, his hair feels almost like fuzz now. I just hope he sits good, it's been so long. The last time we "cut" his hair he became bald within days!!! So I hope that he doesnt have memory of that!!!
Well I just wanted all of you to know that all is going great for us, we finally feel safe with making future plans, and things are starting to feel comfortable again.
God bless all of you and Please hug your kids!!!
Lots of love,
Dawn

Wednesday, January 28, 2004 10:26 AM CST

Dear Family and friends,
Sorry for the delay in updating......
We really have been busy and we are trying not to be consumed by the cancer and all the "what if's" that go along with it. When a parent updates these websites, it brings you back to the realization, and the memories of how you spent last year. And yes a huge part of us and our family is trying to put it behind us, and we are really trying to go back to normal life as much as possible. I know that we will never forget and I know that it's foolish to even think of life as "normal" again, what does that mean anyway????? Oh I know, It means to maybe not live in fear every minute of the day!!!!! And yes, that is a struggle. But theres times that I can look at my life and feel such joy that it will overwhelm everything else. I feel like I'm the luckiest person in the world to be able to know the two most bravest boy's that I will ever meet. There's times that I wish I could share them with the whole world, just so you could all have a piece of them. And I only wish I was holding up as well as them and most of that could be that they are young and that they just don't realize what could happen in the future, and that they can't comprehend or understand what it means when a doctor tells you a 50% chance of survival for your son even after all treatment is done............
Let me give a little advice to all of you, don't ever even ask, because those dam numbers will stick in your head, nomatter what you do or tell yourself, I swear until the day you die......
And thats the fear.
So anyway, We got Justins bone marrow bio. and his bone scan back and they are both clean. We went for his hearing test and they basically told me that Justin has major hearing loss and that he might need an aid, and that they want to do more testing..... I feel strongly that we will wait until Justin gets a little older, maybe then he will understand what the people are asking him to do while in testing.... I talked to our family doctor and he said that it wouldnt hurt to wait. And as for the cat scan and the MIBG, nobody from the hospital has bothered to call. Maybe I'll give them a call later today. His immune system is almost in the normal numbers, (T-cells are at 186 and need to be at 200) which is awsome.
He got his cast off almost two weeks ago, he was walking a little funny up until yesterday, he's still a little stiff but he's starting to turn into a little three year old that spent age two in the hospital!!! What I'm trying to say is that we have our hands full, we havent used the word no in a year, so please wish us luck on starting now.
I should get going.... Justins playing in the bathroom sink and I think that he's overflowing it as we speak!!
Thanks for checking in. God Bless and hug your kids.
love,Dawn

Saturday, January 10, 2004 11:24 AM CST

Dear Family and friends,

I wanted to give all of you a quick update on how Justin is doing. I took him in last Wed. to have a bone scan done, along with his bone marrow bio. Justin no longer has his line in so that means that they had to put an I.V. into his hand (I swear thats harder on me than him), the hosp. supplys us with this cream that numbs the skin, and boy that stuff must work because they dug for what seemed like forever looking for a vain and Justin only screamed a little bit. I think that he gets more mad about being held down then the pain of all of it.
So anyway he did great.. I called yesterday for the results, I feel like I'm losing my mind waiting. I just keep having flashbacks from last year and I'm soo scared right now that his bone marrow will come back possitive for the cancer. I keep thinking how Justins doctor said that if we didnt kill all the cancer cells, it will more than likely show up in his marrow first. All I can do is pray to god, Christ how will I get through the next five years of these tests?????
Okay, I dont have the marrow test back yet, but they called about the bone scan and they said that is was fine. But they also found that the two little toes on Justins left foot are fractured, Can you believe it????? He's been running around on that casted foot for the last three weeks, with broken toes. Could I get a child that could be any tougher??? God sure gave me a good one, and get this, Justins had this runny nose on and off for about two months now, and yesterday he started to get this weird red mark right under his eye. So I called his local doc. and they fit us in right away. The Doc checked him over and found that he has a severe sinis infection, and an ear infection. The doctor even asked, "has he been complaining of any pain", well of course not!!!!
Thats our little trooper!!!!
Justin will have tests up at the hospital everyday next week, and then Friday his cast will come off!!! so were excited about that!!!
Then he'll be test free for 3 more months, besides blood draws of course.
I should get going, Please keep Justin in your prayers, Help keep our little fighter going!!!
God Bless,
Dawn

Tuesday, December 30, 2003 1:45 PM CST

Dear family and friends,

I would like to take a minute to thank all of you for your wonderful kind words, your X-mas wishes and most of all your prayers. We understand that it's not only been a long year for our family, but it has been a long year for all of you as well, we realize that our little boys have touched all of your lives and they have a special place in all of your hearts, for that we are blessed. Because of all of you, this huge fight that we have been fighting has been so much easier, we know that we are not alone, you all have taken time to check in on us and Justin's prognosis for this last year and that means the world to us. I honestly can't find the words other than just a simple Thank You from the bottom of our hearts!

Our X-mas would have went for without a hitch but I ended up having a positive strep culture, so we were all put on meds. The morning went very well, we opened our gifts here first, (on X-mas eve day) Santa was very good to the boys this year, after gifts at our house we headed down to my mom and dads to spend the rest of the day with my family. It was a perfect day, until around 5:00p.m. Justin spiked a fever of 101.8, after I finally got through to the hospital, Justins doctor had us give him some meds for the fever and then told us to check him a couple of hours, we pretty much figured that Justin had caught the strep that I had and he was already on meds for that. Well the fever dropped and we finally had time to relax and enjoy.
On X-mas morning Brandons dad came and picked him up and he was gone until Sun. afternoon (pretty awsome packer game, I must say!!!!) So the three of us just relaxed, we all felt horrible anyway. It was nice to get caught up on some much needed R and R.

I was close to impossible not to think of where we were last year at this time. I can't believe that my son had a huge tumor along with his left kidney taken out on the 26th of Dec. of last year. I can't help but to relive all those days, I thought that I had forgotten most of it and that it was all a blurr. It feels like yesterday..... I think back to all the different doctors and the terms, I'll never forget the first time we heard neuroblastoma, and how long it took me to pronounce the word much less spell it, I now know as much as I want to about the word. Most of all I'll never forget how alone I felt the first few weeks in that hospital, and now it feels like our second home, I know that place like the back of my hand. I have often joked with the nurses about taking their jobs!!! I also feel lucky, I have met so many wonderful
people, people that will forever be a big part of our lives. They are the type of people that you thank god for putting in your path!!!
So were still here living oneday at a time, and yes sad to say we are also reliving some days too. I guess like most big life changing things, it just takes time.

Our next set of scans are coming up in the next couple of weeks. The bone marrow bio will be on the 7th and the rest of the stuff will be the following week, so please pray for us!!!!!
I hope that all of you had a great Christmas, and I hope that you all have a great New Years!!!!
Please hug your Kids, take care, God bless.
Lots of love
Dawn
P.S. I do have to tell you..... Justin did say someting strange on X-mas day. He said "No big doctor, okay mommy"?
Do you think that he also could remember??????

Saturday, December 20, 2003 1:09 PM CST

Dear Family and friends,

OH MY FLIPPIN GOSH!!!

There is a reason that some of us mothers don't update all the time, it's like a jinx, everytime i update saying that everything is fine, something always comes up!!!

Tuseday morning at 4:00a.m. Justin woke up because he wanted a drink of water, I gave him one and I then reached over and felt his leg, I knew right then and there that he was running a temp. It's a skill you learn as a mother of a sick child, you can tell right by touch. Sure enough I checked it and it was at 100.0, I called the "on call doctor", Dr. Matloub, and he wanted me to bring Justin in. I made Joe stay home from work and go with me, without Justins tubies, I had no idea what they would have to do and I didn't want to face it alone. Well we walked in and got settled in the place we once called home for almost a year. The nurses were on top of everything that they had to do, examing Justin and all. They drew some blood to test his labs and his chemistry's. All sounded good with his lungs, but we still whated a chest X-ray to make sure we could rule all that out. I bumped into Emma's mom, Rae, they are there for a bone marrow transplant, I got caught up with her on some thing's. It was really nice to see everyone. Well the X-ray was finally done and read, and Justin was fine so they sent us on our merry way... So on the way home we got a call from the doctor and she told us that Justin tested possitive for the type A influenza, and we had to pick up some meds on the way home.
Okay we got all that taken care of..... Brandon got sick also, he missed two day's of school and missed his X-mas concert, which saddened all of us. They are finally starting to feel a little better...

So last night I was carrying Justin down the stairs, he's still a little to weak to tackle them, with being sick and all. Well i slipped and fell down about six stairs while carrying Justin. After the shock wore off I had a chance to check Justin over and he was complaining that his toes hurt. So to make a long story short, the little fella has a broken bone in his left foot. He's got a half cast on for now, they did'nt want to put a full one on because they wanted to give the foot room to swell if it needed to. So he'll be layed up for six weeks. Can you beleive it???? I finally want to ask, why him?? Yes, yes, I know that it could be much worse. Oh yes, I'm okay I do feel as if I have gotten hit by a Truck, (nothin good ole Dr. McGillicuddys won't fix!) and I have no idea how I will get everything ready for X-mas. Oh well, one day at a time, lets just pray that we stay home for X-mas!
One neat thing happened, while sitting in the ER last night I got the chance to see the doctor (and the nurse, she gave me the biggest hug!) that found Justin's tumor on X-mas day of last year, and he remembered us. He was also very happy to see how great justin was doing and to hear about our journey this past year...
Well I'm thinking that I'm going to put a big bubble around Justin for the next 18 years, then he'll be safe.
I'm going to sign off now. The boy's and I are going to snuggle in and watch Seabiscuit.
Merry Chistmas to all.
Lots of love and Please take care,
and Hug your kids
Dawn

Monday, December 15, 2003 2:54 PM CST

Dear Family and friends,
I'm sorry for the delay in updating the wed page. Our lives have been busy and they almost are starting to feel normal. I will try my best to get all of you caught up on the last month of our lives.

First of all NO Joe has'nt yet gotten a deer, and his time is running out!!!!

Second, we had a wonderful time at the Kids with courage thing up in Madison, Yes it was nice to see that Cindy Crawford is a supporter with research of childhood cancer, she is also a huge supporter of our hospital and she took her time answering all the questions that everyone had. I also did'nt realize that Justins primary doctor, Dr.Sondel was so involved in the Kids with Courage "get together". It was a very inspiring event and it made me believe that anything is possible, and that we are not alone!!! We also got a chance to see some of our favorite nurses, which was so great for Justin and Brandon, when you spend as much time with these people as we have in the last year, you have bonds that will forever stay with us. I miss some of those people more than you would ever think, as does Justin. Some of those nurses and doctors became like family for Justin, he will never begin to understand how many time they saved his life, and not only that but kept his mother sane ( I know that some of you would disagree that point!!!!!). I will forever be greatful!!

Okay now Third, On Dec. 4th we (Brandon, Justin, Debby(sister) and I) got to travel up to Green Bay to have pizza with the GreenBay Packers!!!! Oh my god..... That was the most awsome thing. My cousin Kim, whose son Kyle 14, is being treated for a wilms tumor. Kyle was diagnosed a few days before Justin, and he was treated for stage 4 wilms, then on one of his follow up scans the doctors found cancer yet again and it's now in his bones. So kyle will now be going through treatment for the next two years. The Green Bay Packer thing was put on for the children with cancer of Green Bay, knowing what huge fans we are my cousin was nice enough to call and invite us. So we went on a tour of Lambeau Field and hung out there for a while, went to the Pro Shop, and then met the Packers later on that night. Justin could have cared less, he wanted to eat pizza and ice cream and watch the clown... Here some of the Green Bay Packers are singing X-mas carols and doing face painting and tons of pictures, which is someting that he'll never in his life do again, all he wants is pizza!!! Brandon on the other hand was soooo happy, it was alittle overwhelming for him, but he did end up hopping into some of the pictures with the guys. I think that night is one of my best memories for the year... Thank you Kim and Kyle, I only wish that I could repay you somehow!!!!

Now for Justins health.... We have been blessed!!! Things are going smoothly so far, he just finished up the second round for the Accutane and it went better then the first, he has labs done every 14 days to check his liver to see if theres any damage from the drug. All is good. Justin is turning into the normal little three year old. He does have some leg pain once in a while but not half as bad as it was a month ago. I still have yet to sleep in the same bed as Joe this year, and the reason for that is, Justin has taken the spot. Yes we understand the he needs to start sleeping in his own bed, it's just a battle that I'm not ready to fight right now. That too will change. The next set of labs will be taken this thursday, to start the third round of accutane on X-mas day. Then his next bone marrow biopsy will be on the 7th of January, the the following week he will have all the scans done. I must say that I'm completly terrified to hear to results.

As I'm sure you know, our year is coming up on us so fast. I never in a millon years thought that we would make it this far. Christmas Day will be a difficult day for all of us and a part of me just wants to get it over with. Joe and I have been terrible this year, we still don't have a tree, and we havnt bought one gift! I finally got some of the decorations out last night. Everytime Justin see's a house with lights on it he say's look mom it's christmas time, and the smile on his face is priceless. It makes it easier to enjoy the holiday, but I wish I could forget, how it changed our lives. It's strange what a parent feels coming up on the year since your child, your life, your world has been diagnosed with cancer. It's amazing what a parent has learned about life and love and health, patience and understanding. It's strange how as a person and a parent you can walk up to a complete stanger, whose child have just been newly diagnosed, hug them and tell them that if they need anything you'll be here. And it's amazing how you learn how to take oneday at a time, I know now why god has given us just one day.... I don't know yet how we as parents will be feeling on Christmas day. The only word I can think of is GREATFULL.
It's time to start dinner.
If I don't find the time to update before Christmas, please have a good one and be careful, and please continue to pray for us and my cousin's son Kyle...
God bless all of you and Thank you.
Lots of love and Hug your Kids.
The Ericksons

Sunday, November 23, 2003 3:47 PM CST

Dear Family and friends,
Hello,
I hope all is good for all of you!!!! Sorry that it's been a while since the last update..... We really have been busy. Justins line pull was successful, and it only took about 5 minutes, the doctor said it was on it's way to falling out anyway so thank god we had it pulled. I had them put it in a jar so we could save it, those tubies have been life savers and I think that they will be a nice item for the hope chest!!!! It just amazes me how they work. The very next day Justin and I took the longest shower together!!! He loved the water just spraying on him... Since the line has been out Justin has been a different little boy, just happier, and so much more active, he climbs up the steps now and then slides down on his little butt and he flops off the couch on to pillows and rolls around like a normal little three year old!!! WE were always so scared that if he got to active that he may pull them out so I've been lugging him around for the last year, just to be safe... Now it's like, hey, you have legs now use them!!!! Yea right if I said that he'd be laying on the floor screaming.... But really it is all getting back to normal, little by little. Just in time for the holidays, and oh this is going to be a tough one for all that is involved. Thanksgiving will be good, it always is, and to maybe help matters alittle we have a banquet up in Madison on the following Sat. the 29th. I guess it's the only weekend that Cindy Crawford had open in this year. And its a banquet called Kids with Courage and it's put on for the kids that are or have been treated for cancer, and their familys. We were asked to submit two pictures one with the child during treatment and one now, well when we submitted them Justin was going through treatment, so I put one in with Justin in the coon skin cap and oneof Brandon and Justin (during treatment) I feel very strongly that Brandon is the reason that Justin has pulled through as well as he did... They really are two peas ina pod. Oh now back to Cindy Crawford, I think that she is from Chicago and she had a brother that had passed away from Leukemia and he was being treated at the U.W. of Madison, it was about 15 years ago. The banquet is an all day thing and I'm sooooo hoping to that I have had the pleasure to meet and get to know, and also some of the nursing staff will be there. So I'm pretty excited about the whole day!! Joe desided that he did'nt want to attend ( you know with deer hunting and all), so I asked my sister to attend with me, it wasnt a hard choice, she really went through all of this with us and there were nights that she would stay with me, knowing that I really needed her, I never had to ask, she was always there, I can't tell you how muchwork she has missed this past year (thank god they were always so understanding!!!!). And she has put her life on hold since the day that all this started. This will be a bitter sweet day......
I must cut this short, something has come up!!!
Lots of love and hug your kids!!!
Dawn

Monday, November 10, 2003 1:19 PM CST

Dear family and friends,
Hello to all of you!!!
Sorry for the delay in the updating. Things are pretty calm on our end, and there isnt much change. Justin is two weeks out of day 100, which means 100 days after the stem cell transplant. He had blood work done to check his T-cells to see how his immune system is doing the numbers are supposed to be at around 200, (which is normal, and we can go to church, and leave the house without a mask, it basically means his body is getting to the normal side of recoverary)well Justins T-cells are at 58.... We won't be checking them again for one more month. There's not much that one can do but sit and wait and be very careful with the cold season is coming upon all of us....
Justin is getting his line pulled out on the 14th, I'm so pleased!!!!! Although we will miss it with blood draws, because he will still need labs done every 14 days and that means he'll need to be poked. But this also means that there will be less of a chance for infection, and is means the boy can have a nice long bath...... It's almost been a year since he's been able the have a bathe or shower, or to be able to swim in the pool.... I can't wait to be able to give him big hugs and not worry about digging the tubies into his body!!!
Justin is also finishing up his first round of the accutane... Oh my god, when they said that he could have some moodiness, they werent kidding.... I have no idea how I will get through the next five treatments, he is a totally different child, I have been considering some mind altering drugs for myself..... Honestly though... I just pray, one more day down, 13 more then only 12. Every day we are closer to threatment being done.... Which can be a very scary thing, because when neuroblastoma isn't being treated it can start growing in an instant, and alot of the time it can grow through treatment.... But that WON'T happen, our son is here to stay!
Well not much else is new......
Please keep the prayers up, I know that god is listening!!! THANK YOU to all of you.
god bless and please hug your kids,
lots of love,
dawn

Wednesday, October 22, 2003 6:07 PM CDT

Dear Family and friends,
Yeah!!!! Justin made it through his birthday with no fevers or anything!!! I would like to thank all of you for the birthday wishes and all the prayers. I think that he had a great time. My sister rented a helium tank and then snuck upstares and filled up over 100 balloons I then took Justin to get Brandon from school and while we were gone she brought the balloons down put them all in the living room, and them put his cake out (it was what he wanted, Lilo and Stitch and Choclate). I have never seen such a wonderful sight as my sons when we walked in..... I will ride on that for a while. If any of you saw Finding Nemo, the room looked like the Jelly fish scene... It was truly awsome.. He also received more presents than two little boys should have. We had family and a few friends over, it was a perfect day and night. I had a picture of Justin put in the local news paper and it says, YOU DID IT JUSTIN, look whos three, signed Dad Mom Brandon and Family. It's amazing what this birthday means to all of us, last year I didn't have a clue, I was glad that he was two, only because that was a hard age and I whanted to get it over with, and then had hopes to get him into preschool this year. Strange how life changes. How wishes change, and hopes. Strange how as a parent with a child of cancer (I still kringe at the word), you hope you make it to the next holiday and that all is okay. The other day on my drive home from one of Justins clinic check ups, I was trying to put my feeling into perspective. And the only word I could come up with was..... FEAR..... Parents of childern with cancer feel fear everyday. And its so real and it's so draining, you can still be happy and thankful, and seem okay, but its fear every minute of the day.
I don't remember the last time I have slept through the night, I lay in bed for hours watching Justin sleep, I watch him breathe, and I pray to god. I only hope that all of you parents with "normal, healthy" childern truly know how blessed you are. And yes I'm blessed also, I have three (yes,Joe is one)wonderful boys and I wouldnt trade my life for anything I have learned more in this past 10 months then I ever thought possible about love life and really living.
Blah, Blah,Blah....
Well I should sign off now!!!
God bless all of you, Thank you once again for all the wishes and prayers.
Lots of love and hug your kids
Dawn

Monday, October 20, 2003 3:23 PM CDT

Dear Family and Friends,
hello to all of you... I hope that your all enjoying this indian summer that we are having. It almost makes up for the warm weather that we missed because of being in the hospital....
I wanted to let all of you know that we got the results back from all of Justins tests and his scans and he is cancer free so far... Or I should say that there arnt enough neuroblastoma cells to be able to detect any of the cancer at this time.... They need hundreds of cells to see any under a microscope. So anyway things look good so far and we don't go back for testing for six months, other than blood work. We are now working on getting all his blood work done around day 100, to check his immune system, and if all looks okay they'll pull his line out.
Sure won't miss that....
Our little boy will be three tomorrow. I'm so thankful that I can say that!!!! It's been a crazy year and it all seems like such a blurr.
I need to get going theres a little boy thats alot crabby.
God bless all of you,
lot's of love and hug your kids!!!!!
Dawn

Monday, October 13, 2003 8:45 PM CDT

Dear Family and friends,
Hello to all of you and thank you so much for checking on us..... I must say sorry for not up dating this in a while, I know that all of you are very worried about our little Justin ( and Brandon of course!!!).
Things are going well for us right now. We have been home now for two weeks, with only a few clinic check ups....
Let me try to get you caught up....
Well we did get sent home on that sunday, with home IV meds and a blood pressure machine, Justin had very high blood pressure because the meds he was on for the infection was causing damage to his one kidney... So He was on two different blood pressure meds, one for a quick fix and then the other was the every four hour one... He also was on the IV meds three times a day, to run over an hour, and the a 12 hour IV for fiulds at night. We kept that up for the next 10 days, what a pain, when your home and you have all that stuff going on you almost feel more safe being in the hospital... Let the nurses deal with all of it, when Justin's doctor had told me what can happen if the blood pressure is to high for to long, that he could bleed out of his brain and die..... Well did'nt get much sleep after that, I sat up nights just staring at him watching him breathe. Not that I was sleeping much after the whole seisure thing anyway, I actually was very, very scared to come home, I didnt want to even look at the kitchen where it all happened. It took a very long talk with a few of Justins doctors to make my feel okay with coming home. I think you become a different person when you think that you have lost your child and that there's nothing that you can do..... I know that your prob. all thinking, you didnt loose him, he's still here. But for a few minutes when things were so scary on that night, I thought that he was gone, I have never felt such fear, and I would give anything to forget, but I just can't. I will not ever be able to find words to explain what it was like and what both Joe and I have gone through in our minds the last few weeks. But I can tell you on those sleepless nights, God and I have gotten pretty close.....
So on that note, let me catch you all up to speed. After the realization that Justin's body has been through about all that it's going to handle, he will not be doing that whole antibody treatment. So basically treatment is pretty much done for him, he will be getting the Retinoic Acid, that will be for six months, two weeks on and two weeks off. It has some side affects but nothing compared to the last months of chemo... And we will be taking it all oneday at a time.
I'll keep you posted....
Lots of love, please Hug your Kids.....
Dawn

Saturday, September 27, 2003 1:12 PM CDT

He woke up at about 12:30am on Monday morning, like always there was a diaper change that was needed, I then fixed him a bottle and told him to go back to sleep, I have been sleeping on the floor next to him since this all started, thinking it was the safest thing for us, and maybe my little boy wouldnt be so scared between home and here....
I turned on the T.V. as I do every night when Justin wakes up and I can't fall back to sleep, I felt him jump while he wwas laying next to me, his eyes wide open saying that spiders were all over him, I told him he was fine and that he needed to go back to sleep... He closed his eyes for about two more minutes and he awoke again seeing the spiders and at this time he was reaching out as if to bat them away, and he honestly could see something, It was almost to the point where I thought there were spiders all over the place..... I then thought that maybe Justin was still asleep and that he was having night terrors. So I thought that it would be a good idea to rock him in hopes that he would fall back into his deep sleep.....
It was now about 1:00a.m. and we were rocking, but Justin still kept pulling back and looking at my chest and saying that there were bugs all over. I then heard Joe rolling around in bed and asked him if he was awake, he said yes and got out of bed. He took Justin from me and right away said something more was wrong, at this time his legs were trembling off and on. So I took his temp. and it was at 99.3, which would'nt explain anything.....
I then placed a call to the hospital and the Dr. on call, Dr. Gowans, called back. She was stumped, as to what the problem was. He did'nt have a high fever to explain the seeing spiders. I did inform her that he had a strange rash on his face.... So we thought that some benadryl may help the rash and some tylonal for the low fever. I also told her that we did'nt hook Justin up to his fluids the night before, so she thought that his chemistry's were
maybe a little out of wack. Or we thought that maybe the bag of fliuds that he was on was contaminated....
The plan was to give Justin the two meds and then to draw labs and run them over to the Watertown hospital.
It was now around 1:30am,I had just hung up the phone with the doctor, given Justin the meds and within a minute Justin started shaking (while in Joes arms, thank god ), he flew his head back and started turning blue.... I grabbed the phone and then called 911, as I was talking to them on the phone I ran up stares to get Chelle(who used to dispatch for 911) and Mike (who part time lifegards for a publis pool). They came running to the door and then down stares. Chelle took the phone, I could'nt even remember our address, and Mike took over for Joe. We thought that Justin was choking because I had just given the meds. Justin was laying there lifeless, he was'nt breatheing, he was bluer then blue and we could'nt find a pulse.
I grabbbed my cell phone to call my dad who lives just down the road, I needed him for me and to come and get Brandon. I then called Dr. Gowens back and explained what had happened, she thought that maybe it was his chemistry's.
Joe and I freaked out for about 5 minutes thinking that it was the end for our little boy.......
Mike got him breatheing again and we found a pulse, we then realized that Justin had had a seizure......
The lake mills EMS showed up only after about 10 minutes, which felt like a life time, they came in and tried to stablize Justin and realized that this was quite a handfull for them, they called the parimedics to have them meet us on the road, and we were off.
I road with Justin, Dad took Joe, and Mike and Chelle stayed with Brandon (who never woke Up)....
We arrived at Fort Hospital, which seems like it took forever, at around a little after 2:30am. Justin had another seizure on the way and one more at the hospital....
They then drew his labs and found out that they were in the normal range... Now what?????
While this was going on we were also arranging transportation to the U.W.
To make a long and horrible story a little shorter...
We arrived "home" around 5:00a.m.
The only solution or reason I could come up with was that Justin had relapsed and that the cancer had spread to his brain. I walked around the hospital and cryed for about 2 hours, I was not going to be blind sided like I was on X-Mas day......
Finally, Justin was taken down for a cat scan... It was our nurse (Yes Sarah), My parents, my sister, Joe and I. We were trying to prepare for the news that would once again change our lives.... The ct scan was done, Sarah watched and the we all walked back.... Sarah said that the cat scan tech didnt see anything!!!! We could now breathe..
The doctor then did Justins bone marrow Bio. and a spinal tap. They have been clear.
Basically the doctors think that Justin has a viral encephalitis, which means that he has an infection in his brain... They don't know how he got it, other then the fact the his immune system is so low..
But it would also explain the rash on his face..
He is now doing so much better, and we were set to go home on Friday.
But we are still here, Justin is now experancing super high blood pressure... Which could be a result of the meds used to fight the encephalitis also can damage the kidney...
So we have tested the kidney and can't find out anything possitive, so he's on some meds to help lower the pressure... hopefully tomarrow...
I need to go He's awake....
Lots of love and hug your kids
Dawn

Friday, September 12, 2003 11:47 AM CDT

Dear family and friends,
I would just like to take a minute to thank all of you for visiting our web sight and for all the wonderful words that have been written, and all the prayers. We truely wouldnt have been able to make it this far if we did'nt have our family, friends and neighbors. As much as all of you enjoy looking at Justins web page for updates, we also love to check out our guestbook. So thank you all so much for your time, we really feel blessed!!!

I must tell you I'm overjoyed today.... for two reason's (1) There was an update on Emmas web page, they will under go more chemo, and it looks like she is having positive results from her last treatment.... Keep prayers going, and even fingers crossed!!!!
(2) Justin is now done with his radiaton, 12 treatments done, can you believe it????
As I drove home today, Justin slept and I had a little quite time to just think and reflect on the last nine and a half months. When I think of all that our son (both really) has gone through I just sit and shake my head. I can't believe a two year old boy has done all of this and still comes out smiling. I can't believe that I missed his whole, being two years old, (maybe a good thing). I can't believe that Brandon is back in school again and in second grade, and that Justin will be three in Oct. Do you know how great it is to say.... Justin will be 3..... I never knew that those words would sound so awsome or that I could feel so blessed. I feel that Justin is our little rock, the little man that has changed me and my way of thinking to such an extreme that I never thought possible. He will never know what a strong, tough, brave boy that he has been, and it's because of that, that I feel like I can get through anything that comes our way.
Our next and final step to being done will treatment will be this study... We really won't know which one that it will be, it could be one that has only 13-Cis-Retinoic Acid Therapy, which is a drug taken by mouth 2 times a day for 2 weeks on then 2 weeks off for six months, and it's proven to kill neuroblastoma cells. Or we'll get the drug and the antibody treatment, which will be the 5 more hospital stays.... I'll keep you all posted on that.
We need to go through all the testing again to make sure that there isn't any cancer growing... Tests include Bone marrow biopsy, MIBG scan, a kidney functing test, and a CT scan. I think thats all of them. But they will all be done by Oct. 3ed and we'll know which study that we will participate in by the 6th. So there's not to much waiting...
I should get going.... House work just can't get done on it's own.
God bless, Please hug your kids....
Lots of love,
Dawn

Monday, September 8, 2003 3:17 PM CDT

Dear Family and friends,
Hello....
I received some very, very bad news the other day, and it has left my heart broken once again.....
Little four year old Emma Blom has relapsed.....
She hasnt yet even finished all of her treatment, and she has AML, which is a type of leukemia.
I honestly hav'nt been able to think of anything else since I found out on friday. There's a group of us mom's that all had our kid's in treatment at about the same time this past year and Rae (Emma's mom)was one of them. We would have some very good talks, and I have never seen such a happy, creative little girl. And with the type of treatment that Emma got, they were stuck up at the hospital for weeks (like anywhere from 6 to 4) at a time. Justin would come in for chemo and go home and then come back for a fever before Emma ever got to leave. The last time I saw them was when we were in for transplant and Emma got to leave before us. Rae was soooo happy we were crying and jumping up and down with pure joy!!!! Oh course I was jealous (and alittle sad) because she was going, and she was the last of the "group of mothers" left up there besides me..... Rae came to my room and left a huge bag of hospital toy's for me and Justin to play with, those big spongie paddles and balls, and the beach ball of course... She said that she would'nt be needing the darn things anymore and that she was done.
I honestly don't know what they will be doing for Emmas treatment now and I feel so lost... I can't even pretend to know what her family is going through.
If any of you would like to go to Emmas web page, it's the same as Justins, except the name is emmab. Please if you all could find it in your hearts to add them to your prayers, that would be great.
Now for little Justin, he has eight rounds of radiation down and four more to go... If all goes as planned he'll finish up this friday. Then we'll start all testing for the antibody study that were going to sign up for.
Things have been going good for the most part, he's not up walking around like I wish he would, but I also understand that he is pretty weak (and lets face it, spoiled, but who can blame us?). He's been eating pretty well to, and his spirts are up to, he talks a mile a minute, you'd never even think that he's being treated for cancer...
Brandon is doing good with his first week of second grade over, he's slipped back into the grove of things very well...
So things here are going smooth. I hope that all of you are doing well and I would like to thank all of you for the very kind words and all the prayers, we would not have made it this far without them!!!! THANK YOU.
Gotta go, Brandon's gettin off the bus.
Lots of love and hug your kids,
Dawn


WHAT CANCER CANNOT DO

Cancer is so limited.....

It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot surpress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conqure the Spirit

Author Unknown

Wednesday, September 3, 2003 9:11 PM CDT

Dear family and friends,
Hello to all. I hope all is going well with all of you... Alot has been going on in our crazy lives the last week and I have some up dating to do. We ended up spending the night in the hospital on monday the 25th because Justin had a potassium level that was way out of range. Normal numbers are 3.5-5.2 and his was at like 7.2, which is way to high for such a little boy like him, basically the doctor had said that if it had gotten up to the 8 area justin would no longer be with us. Okay good to know... But the doc's got it all under control, I guess Justins acid levels in his blood were really high and that made the readings with his blood all out of wack (another one of those things that I understood when the doctors explained it to me, but I'll never be able to explain it to you guys). So we only had one night stay and on tues. Justin had his first round of radiation. That all went pretty well, and surprisingly fast. So on thurs. we celebrated Brandons 7th birthday, we had a nice little party for him with just one of his friends and a few other family members. So then on Sat. we had a great big party for Brandon (it was a total surprise for him) and it was awsome, after the last nine months of that boy's life being so crazy and mostly about the hospital I just wanted him to have an awsome 7th birthday... And I think he did, our whole family was together, and two of my aunts and uncles even showed up, and just a few really close friends... It actually felt like we had a normal life. There were fireworks and all. Justin did have to spend most of the time in the house, but I think that he enjoyed himself too. So on sunday we just cleaned up and hung out. Then monday morning at about 1:30a.m., Justin spiked a fever of 102.8, The minute I felt him I knew he was spiking, it's been so long since he has been that warm, so there was no mistaking it. So that bought us a ticket back to the hospital once again.... They drew blood and the cultures came back within about 4 hours, which means he had alot of bacteria in his blood, and that he had a line infection. We had thought that maybe we had done to much over the weekend, but really something had gotten in his line, which is very common when you have a central line. Thats why parents want them gone asap.
So we are home now and he'll need eight more doses of his antibiotic, which I can give to him at home IV through his line(learned that a while ago!!!). It's amazing how much one can learn in such a short time, and how fast it all comes back to you even when you have'nt used it in awhile. Well were going for radiation treatment number 7 tomorrow, then Justin will be half way done with that part of his road to beating this darn cancer.
I had a talk with Justin's doctor today, Dr. Sondel, he's Justins primary doctor. And geez that was the most depressing talk that I've had since X-mas..... He wants us to sign up for this antibody study that is open right now for neuroblastoma. Signing up for this study does'nt mean that you'll get picked for it, a computer does that, and it's called a study because they don't know if it works, when tested on mice it's been proven to work, but thats not sayin that it will work for us. I'll explain a little bit of this "treatment", to you all now and if we are chosen I'll go more into detail.
Pros and cons....
Cons are
1. Five more months of treatment for Justin
2. While given the drug over four hours a day, Justin will be in more pain then we could EVER imagine, I've heard that kids actually scream through the whole time. Reasons for that is because the drug is made to put these little flags on the neuroblastoma cells and then the body's immune system is stimulated to attack and kill the neuroblastoma cells. But his immune system will also attack his own nerve cells because thats where neuroblastoma starts, is the nervous system.
3. Other side affects are the nausea, vomiting, headaches, he could get a bad infection.... His heart or lungs may be damaged. ECT....
4. Did I mention 5 more months of treatment????
5. It may not even work.
Okay what are the pros
1. It just may work and make our child cancer free.
Well that's about it for the pros and cons. So we are signing up....
Some of you may wonder why we are trying to do this antibody study with all the horrible side affects and yet not one forsure answer.... Well once again Dr. Sondel reminded me about the fact that with stage four high risk neuroblastoma there's still less then a 50 percent chance of survival, even after all the treatment that we have faced so far....
So now ask me again why!?!?!?
I think that we have to wait about 4 more weeks to find out what will happen with the study... If not picked, we're pretty much done...
Can you all believe that school started???? I missed Brandons first day of second grade, one more thing that I can't get back.. All thanks to this darn thing called cancer....
I better get hittin the hay!!!
God bless all of you and thank you all for all the prayers...
Lot's of love and hug your kids!!!
Dawn

Saturday, August 23, 2003 3:34 PM CDT

Dear family and friends,
We hope all is well with all of you.
We are home!!!! We got home last Monday at about 4:30pm.
You have no idea how good it all feels!!! And you'll never realize how much you take for granted, until you don't have it for awhile.
Justin is doing good, he was sent home on the TNA to run over 12 hours and that we only ran until Wed. night. The reasons for that was because I checked his blood sugar on tues. morning and it was down to 17 again..... Yes, I totally freaked out. I called the doctor and just pumped a bunch of sweets into him. I waited for a little while and checked it and his blood sugar finally started to rise. I ran the TNA on Tues. night then on Wed. we had to go back to the hosp. to talk to the radiologist and see Justin's doctor and we decided to take Justin off the TNA all together. The doctors feel that he's eating okay so far, and theres more harm in keeping him on the TNA. So thats done. Justin is still on fluids for 12 hours at night, but at least we don't have the worry with the blood sugar levels. His body never could handle that TNA. Justin is starting to get his strength back little by little..... And he is soo happy.
So radiation will start on tues. He will have 12 treatments of that, over 3 weeks. The side affects are, diarhea, nausa, and he may be tired. So basically nothing with really change seeing as Justin has had the Norwalk for almost a year.....
I have to say that I don't think that I have ever been happier, were getting close to being done. When I think of all that Justin has been through I can't believe that there's finally a light at the end of the tunnel.
Well, Justins callin, he wants me to help him do some painting....
Lots of love and god bless all of you!!!
Dawn

Wednesday, August 13, 2003 2:53 PM CDT

Dear Family and Friends,
I hope all is well with all of you!!!
I'm very sorry for not keeping you updated for a little while.... My mood hasn't been the best lately and I did'nt know where to begin, to try to fill all of you in on how Justin is doing. Well were still here... And it looks like we will be for another week.
Last friday Justin "crashed" as they call it. The doctors took him off one of his steroids and they also began running his TNA over 12 hours and his body had a very tough time adjusting to both of those things. He ended up being over loaded with sugar, so his body stopped making it, then he had no sugar coming in and his body did'nt know to start making it.
I'm trying to make this easy for all of you to understand.

His doctor thought that he was coming down with an infection, he had a slight temp, his heart rate was at 190 and his blood pressure was at the 80/30's again. Which are all the signs of an infection. But yet it was still a surprise because his fever wasn't really high and for him to come down with something was kind of difficult seeing as we haven't been anywhere and his counts are good. So Justins nurse (oh, poor Sarah!) had checked his morning labs (drawn at 6a.m.)and his glucose level was at 350..... right off the bat we figured that it wasnt right. So we got out the ACCU-Check (finger poking machine, for diabetic's) and his level was like at 14 (normal is 60-100). Machine said get doctor, reading off the chart!!! So basically justin was REALLY hyperglycemic.
So we had to give him strong Dextrose (medical sugar) which seemed to help , until he crashed again..... While this was going on, it was very hard to wake little justin up, he was prety much going into shock. There was about ten doctors and nurses in our room a crash cart outside our door and all in all it was a scary morning...
After three different attempts to stablize him his body finally kicked in and it all worked.
But the results of that day are still lingering on... We were put back on the steriod and the TNA, only to be tappered off slowly. So thursday we'll be down enough on the steroid safe enough to be sent home on... Then they'll tapper off the TNA down enough to go home on a 16 hour run.... So god only knows when that will be, I'm not even going to guess.
The other effect that is lingering on is they had to take him off his pain med cold turkey. Because they didnt want him to have anything that would make him sleepy on that fri. it was sooo hard to wake him up. and they also didn't have enough "line space" to keep it running.
So Justin hasnt slept at all until last night. No naps, nothing!!! And I tell you, he's the crabbiest kid I have ever seen, even with big brother here!!! Then again we're all crabby.
I'm think that he's getting over the withdraw, little by little.
But now today, things are better, we're just playing the waiting game, hoping to get home soon. When Justin woke up this morning he said, "momma, home... Big steak!!!" Of course, anything you want.
Sometimes, when all this crazy stuff comes up, it's so easy to forget the real fight, the cancer. All this other stuff is so overwhelming, it takes your mind off the one big thing that could still take our son away...... I still can't believe that justin has gone through six rounds of chemo and a stem cell transplant all this year already. And what a year it has been.
Justins favorite nurse Sarah left today, she's going on a much needed Vac. to Florida for a week. We prob. won't see her now untill we come back for check ups. Boy that was sad, Justin would'nt even say goodbye to her. He knows. And I don't know what I'll do without her here, she became such a part of our lives!!! it truely is nice to connect with your sons caregiver like we did with her, from day one she was here. And like I said before it's great to have nurses that care about your child like it was they're own, or a nephew, or someone that they have known for a long time. But when you think about it she's been a part of our lives for eight months. And a very important part too. There were nights that she stayed here with us (even off the clock) when I was'nt doing to well, and there were nights that she would just sit and visit because she knew that I was lonely!! And there were days that only she could make Justin smile!
Once again I do feel blessed, I have met so many awsome people during this jounery of ours. people that have made this so much easier.
Well, I just had a visit with the doc. He said sometime next week. Yeah Right!!
I do have to get going. Justin, Brandon and I are making a big ol tent over justins bed, so it's time to play!!!
Thank you all so much for listening, and thank you even more for the words in the guest Book!!!!
Lot's of love, hope your all enjoying what's left of the summer, hang out with your kids.... School's starting before you all know it!!! Don't forget, Time is one thing that you can't ever get back!!!
God Bless
Dawn
P.S. A Reminder for Parents
Your child will survive
because of you and succeed in spite of you.
There is nothing you can do to prepare for three things:
age three, age thirteen and when your child leaves home.
you are not prejudiced-
your child is the most amazing! it is genetic unlikelihood that bad behavior comes from a single side of the family.
Your child will appreciate embarrassing photos and stories a) after the are forty, b) after they have a child of their own.
it washes out. it can be repaired.
the most precious thing is your child.
if behavior is embarrassing...... it has to do with your ego...... not theirs
remember the difference between
looking and seeing.
thoughts of your child will bring
tears at
unexpected moments.

Wednesday, August 6, 2003 9:17 PM CDT

Dear famliy and friends,
Hello to all of you!!!! I hope all is well!
I think that i need to clear something up with all of you...
When I said that the doctor came in and said the thing about "breaking the record" about getting out of here, he was joking with me, in a very hopeful way....
Although I must say, things are going very good, and the doctors are impressed with how well Justin is doing. You have to remember that we were all pretty worried about that darn norwalk (yes, he's still positive for it!) virus. There isn't any written anything anywhere about someone going through a transplant with the virus. But so far we can't tell that there's any problems.
We're looking at going home early next week. there's some things that need to be done first.
Justins antibiotics will end tomorrow, all but one that he will need to go home on and take by mouth.
Second, we'll need to cut down his TNA to running over a 12 hour span and we'll have to make sure that his electrolites (?) don't get all out of wack. As of right now it's running over a 16 hor span. I truely didn't want to go home on the TNA, I wanted Justin to start eating like RIGHT NOW...... But his doctor feels that because we are heading home so soon, we should'nt push him, he say's that Justin will eat when he's ready, some kids don't eat for months after.
The third thing will be getting him off his pain meds, like I said before, he's really not needing them, but they still have to be slowly cut off.
As for me, I think that I'm losing my mind..... I want to go home!!! Just kidding. It hasnt been that bad, I think that I'll end up giving my husband a total breakdown, for he is the one that gets the blunt of my moodyness!!! I let him have it, then I'm all better. I've told all of you that I'm a control freak, so I'm always grabbing at straws. Joe, take out the garbage. Joe, clean the house. Joe, feed the rabbits, do the wash. Joe, pay the bills. Joe, water the horses. Blah, Blah Blah. What the heck do I care??? I'm not home! It's the control thing!!!
The day's all seem like a blurr. Sat. I went to see a movie (seabiscuit, VERY good), and then sunday Brando and I went home to clean the house. Brandon's aunt (my x sister-in-law, who is also one of my greatest friends, yes strange!) Chelle came over to help, and we got most of it done!!! Just left the carpets (mom and dad are getting that done) and the kitchen. So things are getting ready for the home coming. We still don't know all the new rules for Justin. And we still don't know when he'll have his radiation treatments.
I can't believe that this part of treatment is almost over, this was the scariest part , you would'nt believe how much sleep i lost over the thought of what could happen to my son during transplant. I don't think that theres any parent that doesnt have nightmares, or who doesnt think the worst. I think that once you find out that your child has cancer, it's almost impossible to think positive about things. I have to say, after this transplant things are getting easier, I really did hear some terrible stories of what could happen, and little Justin just flew through. But then when you think about the trouble we had the first six months, he needed a break!!!
So thank you all again for the prayers, I know in my heart that God is listening!!!!
Take care, god bless, please hug your kids!!!!
Lots of Love
Dawn

Friday, August 1, 2003 7:30 PM CDT

Dear family and friends,
Hello to all of you!!!!
Justin is doing really good!!! His counts came back at 2.3 (normal is 4.0- 12.0) this morning, and his neutrophl count is at 1000 (normal is1400-6600), they are the part of the white cells that fights any infection that justin may have. He did'nt need any transfusion's today. Last night we did have a little scare, Justin's heart rate was pretty high, around 190's and his blood pressure was really low, 80's over 30's. The nurse checked his temp he was spiking a fever, 101. So she drew blood to have cultures done, to see if he'll "grow" anything, so we can find out where the infection is coming from, if there is an infection. So to help his blood pressure and heart rate the doctors ordered more fluids for justin. After about an hour things started to look better and I finally got some sleep. It was very worrysome, with everything going so well, I'm waiting for a big bomb to drop. The doctor had said that if he still keeps having these little fevers, but nothing grows in the cultures, that we may need to have a cat scan to see is there are any abcesses growing in his body. It is doubtful, but it would explain the fevers.
We had a visit from the radiologists today. And from what we have gathered so far, Justin will go through two weeks of treatment, everyday. They'll come back next week and fill us in a little more!!!!
Justin's transplant doctor came in today and asked us if were trying to set the record for the fasted recovery for a transplant!!!! He also said that if all goes well were looking at getting out of here late next week or the early part of the following week. But please lets not forget it's not written in stone, and lets not forget our little Justins "luck" through all of this. He is still positive for the norwalk and we still don't know all the damage the transplant could have done to his guts.
Brandon is doing great.... Justin and I have kidnapped him and he's been staying with us since monday. It's almost impossible to tear these boy's apart. And with all thats happened who would want to??? I asked brandon when he wanted to go home, he said " when you and Justin do". Want am I supposd to do? It makes our stay here so much easier. Although tomorrow Joe is taking off of work and coming up early so Brandon and I can head out for the day, I so, so need a break!!!
Well, I just wanted to get you all up to speed on whats going on.
I would also like to thank all of you for everything!!!! The prayers are being answered, and we couldnt have fought this fight without them. We truely couldn't be happier or more blessed. There really arn't words for the appreciation that we feel, not only us but our family also!!!! Thank you.
I should sign off now. it's bed time!!!!
God Bess, lots of love, and please hug your kids!!!!
Dawn

Thursday, July 31, 2003 3:34 PM CDT

Dear Family and Friends,
Okay, I won't make you wait any longer!!!!
Justin has counts. As of this morning his white cell count is up to 1.3, to all of you that are wondering, this is great news!!!!!! It means that the transplant worked, and now we're on the road to recovery!!!
his counts actually showed up on tues they were .1 and then they were .6 yesterday!!!! I don't think that I have ever been happier then I have been the last couple of days. As for everything else, it's going good. his mouth sores are improving everyday, and we have started to cut back on his pain meds, very slowly of course, because if they start cutting him off to fast he'll go through withdraws. He hasn't spiked any fevers for a week, so after this 14 days of the antibiotics(this tues) he'll no longer be needing them!!!
Neither the doctors or the nurses can hardly believe how well our little boy is doing!!!!
We're going to try to get him to start to eat tomarrow, he hasn't eaten in almost two weeks, so we'll see how it goes!!!
The doctor is now entering, so I should go!!!
God Bless, hug your kids,
and lots of love!!!!!
Dawn

Monday, July 28, 2003 1:31 PM CDT

Dear Family and friends,
Hello to all of you!!!! I hope everything is going well and your having a great summer!!!
I must apoligize for not updating this sooner, I wasn't totally at fault, the hospital internet service was not working all weekend. So now get to catch all of you up on our little Justin..
Um lets see.... Nothing is happening (knock on wood), Justin hasnt spiked a fever since last tues. He's had little fevers like around 99, but he hasnt had anyother infection. He's need platlets three times, and actually will recieve his forth transfusion today, and his hemoglobin (red cells) is holding at around 9.5 so he hasnt needed any blood (just once).
I must say the things that are coming out of his mouth and his bottom are looking a little scary, pretty much green water (looks like swamp waters from a bar back at home). But really whats coming out is mucus, and stomach acid, and just stuff!!!! Sometimes I just chose not to know things.... There's a part of me that did'nt want to update this because everytime I do something bad happens.
So yesterday Justin had a few visitors, Joe came up here of course and he brought my mom with him so her and I could have some shopping time. We went up to a big tack shop in Sauk city ( about 25 min. away), we stopped for lunch and then came back "home". My dad came up and picked her up, and then they headed out after a nice visit. Then my bother Ray and his wife Tina came to see little Justin, and they stayed for a while, they even out stayed Joe (who needed to get home for brandon, and for some sleepy time, he still leaves by four A.M. for work). So we had a very nice visiting day, they left around 8:00 p.m. they live just under two hours away. It sure made the day fly, as are all of them for the most part. As of today it's been two weeks. And today my sister Debby brought brandon up to see us, Yeah!!!!! We havnt seen Brandon since last tues! Not good, I miss that little boy like crazy. I cant stand him being gone for that long, and i know that Justin is beside himself without his big brother. So with the help of aunt Debby and Brando, Justin has been sitting up and playing all afternoon, I'm talking hours!!! They are going to town with the play-doh. I also ran over to talk to one of the other mom's, Rae (her daughter Emma, is fighting AML) and she gave me a beach ball to play with! What a great idea!!! We are now playing volleyball in the room.
I know we were going to try to keep the visitors down, but you wouldnt believe the difference it has made with Justin, and the doctors (from now out) try to advise it. With caution of course!
Tomarrow is the big day to start looking for white blood cells, I can almost promise you that he won't have any show up yet, they have sooo many mouth sores to fix first!!!
I think I should sign off now, thers play-doe to be played with!!!!
take care everyone, have a great day!!!
Please hug your kids and go to at least one fair this summer!!!!! And eat lots of fair food!!!
Love,
Dawn

Wednesday, July 23, 2003 6:24 PM CDT

Dear Famliy and friends,
Sorry for not updating this yesterday, actually I could'nt, let me tell you why....
Our day started very good, Joe and brandon got here earliy in the morning around 9:00 am, we had our nurse Sarah, we were her only patients, and things were just going pretty well over all. Justin did spike a little fever, which was not a surprise, so we were just waiting on the pharmacy to send us antibiotics, and we were waiting for the big stem cell transplant to get done with. The strange thing about stem cell transplants, once you get all that chemo, you can't change your mind, even if the risks of it finally set in and start to scare the crap out of you..... Anyways the transplant went very well, it took a total of about 10 minutes and the doctor was on her way. So we were just hanging out taking his blood pressure every 5 minutes, and every thing was fine.... At this time (about 1 1/2 hours after) Brandon and I thought we should go to toys R us to celebrate the whole stem cell thing and the fact that it went so well. So we talked to nurse Sarah to double check that Justin would be fine and off we went. While we were gone Justin finally received his antibiotics..... Well I get a call from Joe while leaving Toys R us and he says you better get back here right now Justins going to the PICU. Oh my god........
It turns out he was having a reaction to the antibiotics that were trying to fight his infection and his blood pressure was dropping and they couldnt get it stable without going to the PICU.
Well I've never driven so dam fast in my life in so much traffic. by the time I got here, Justin was just getting settled in the Picu, so I didnt miss much. His numbers were like 60/30. The doctors ordered him to have a bunch of fluid to help stabilize him and it seemed to help. Thank God!!!
Other than that little scare, we are now back in our room (or home as I like to call it!), and just taking on hour at a time. I had forgotten how fast it can all change, just when you think it's all going to be fine...... God shakes it all up a little bit!!!
Just wanted to catch you all up for now. Thanks for all the prayers. God bless you all!!!
Lots of love and hug your kids,
Dawn

Monday, July 21, 2003 10:16 PM CDT

Dear Family and Friends,
Hello to all of you,
Just wanted all of you to know that things are still going smoothly, or as smooth as they are going to be. We found out today that Justin also has a allergic reaction to this other pain med, its a "sister" to morphine, so we really arn't to surprised. But its also the only choice that we have, so were trying to fight his hieves and all the itching with benadryl. So this is making Justin even more unhappy. Over all he has slowed down on his eating, he had a good eating spell this afternoon but thats been it for the last 24 hours. His poop has now turned to water again, which was to be expected, it always happens with any amount of chemo. Other then that he doesnt have a fever yet and he's not sick to his stomach anymore. I know that the fever is coming which will mean that hes got an infection, the doctors and nurses tell you just to plan on it!!!!
Well I made Joe bring up Brandon, Justin and I couldnt take it anymore, we havent seen him since last Thurs. thats just way to long!!! Of course Brandon is having the time of his life at my brothers house, his boys are in 4-H and it's fair time this week so Brandon was having a blast helping out with all of that stuff. So any way Joe and Brandon are staying at the Ronold McDonald house tonight so they can be here early tomarrow morning for the transplant, it's set for noon. And thank God we have our favorite (one of the many, actually!) nurse Sara, Justin just loves her!!! Shes the poor nurse that was here on christmas day when we were diagnosed, and she pretty much begged to be able to do Justins transplant. We really are feeling at ease, from the very beginning this has all been out of my hands, and as much as I need to control things in my life, I have none. It's been the scariest experiance from X-mas, but I also have realized that god does have a plan for all of us, and although we may not like it, we cant change it. I have learned so much and changed so much in the last seven months, and I believe that I have become a better person, a better friend, a better wife, and I hope a better mom. Theres always room for improvement, but I'll never stop trying. It's hard to explain what happens to a person after cancer enters your life, and there were times that I missed this hospital when we were home for those 5-6 weeks, and it's because every person that's here in "our" ward knows what each of us are going through. It doesnt matter what type of cancer, were all the same, we have the same fears, the same worries, the same "break downs", alot of our treatments are the same, and we all get the same answers from our doctors, "No I cant tell you forsure how it will turn out! I truely love being here and talking to the other moms, because they really are the only ones that understand how my life has changed. And when your child has cancer you really feel very alone out in the "real" world. Life really goes on for everyone around me, whereas mine has stopped, mine is filled with the unknown. I will never know what tomarrow will bring, not for the rest of my life. The funny thing is, is that there's people that actually think that because "treatment" is done, that were free to live life and pretty much put this whole nightmare behind us. But what they don't realize is there's always a chance even after the five year mark that the doctors give us for check ups. Every year our son will need tests, for god only knows how long, and do these people know the chance is pretty good that our childern could get a different type of cancer because of all the chemo that was used? Do people realize that my son will forever live without a kidney and we will sometime down the road need to get tested, in case the one he has fails????
Sorry for the babbleing, but I guess I just wanted vent, yes, soon our treatment may be half way over, but that doesnt mean that our fight is done, it's everyday.
Well I should head to bed, and snuggle with my little boy(yes, he makes me sleep with him!), for tomarrow will be one of the biggest days of my life!!!
God bless, hug your kids,
and Lots of Love!!!!
Dawn

Sunday, July 20, 2003 12:27 AM CDT

Dear family and friends,
Oh my gosh..... Yesterday was an awsome day!!!! Our little Justin is now and forever done with chemo... Can you believe it???? We are so happy, they unhooked him at 10:00 am. Now were just waiting for all the bad stuff to start, the doctors decieded to put Justin on a pain drip with a really small dose, just to keep ahead of all the pain that will come in the next couple of day's. They are also putting him on TNA which is nutrition through his line, he hasn't stopped eating yet by no means but they also want to keep ahead of that too.
Well tomarrow will be one week mark for us and I must say it's going by pretty fast. And tues. is coming up even faster! I will try to keep you all up dated daily, I know that your all very worried and concerned.
I hope that you will all keep up the prayers, it may seem that all is going smooth, but we have a very long road ahead of us...
Thank you all for the very kind words in the guest book its great to open that and read, just knowing that we have so much support makes the journey so much easier!!!
Please take care, god bless and hug your kids!!
lots of love
Dawn

Thursday, July 17, 2003 9:00 PM CDT

Dear Famliy and Friends,
Yes, we finally made it!!!! We arrived here on Monday around 11:30 am, it really was a slow ride up. Just knowing what was ahead of us in the next month did not make it easy. Although i am ready to get this over with, I worry so much about what the out come may be. I have heard that Justin will be sicker then I have ever seen him, well the last six months seem like a huge blurr, so I feel like I'm a little lost. And this is'nt the "normal" chemo that weve had. So once again we're just taking one day at a time. Justin was hooked up to the chemo on tues. at 10:00am, he will be getting two types of chemo for four days straight, he will get done with that round on sat. at 10:00am, he will forever be done with the chemo on that day, he also received a fifteen minute "push" of a different type of chemo for three days and that was done with today.... I must say that the days are going really fast so far.
After Justin gets unhooked on Sat. he will "sit" for three days and at that time all of his bone marrow will die, and he won't have any white cells, from what I heard things will be extreamly scarey for my little boy. Then on Tues. he will receive his own stem cells back (they collected them after second round), then we just wait until they grow.
We are already starting to see the effects of this round of chemo, Justin is throwing up already and he is almost maxed out on the nausea meds. And he is already complaining of a sore throat, which means the sores are already coming.
I also must tell you that coming back here was not an easy task, although Joe and I started to tell Justin a week ago that we needed to make one more visit to the "big" doctor for a little bit he seemed okay with it until he saw the big black luggage bag.... He started crying and saying," no mommy stay home." Those are the times that you have to dig deep in your heart and find that hidden strength, that you don't really always need. Joe has only missed one night up here so far, he's still working 14 hour days and he has requested to have off on saturdays from here on out. Brandon has been up here every day this week so far, today was his last, I know that it will be very hard to keep the boy's apart but I don't want Brandon to see his brother this sick, I think that he has worried enough and seen more in this life time then I want him to, (with the cance). I sure don't want him to see the things that we were told that we're going to see. And also, after this weekend Joe and I have deceided that we really don't want any visiters so we can lessen the chance of infection to Justin. At least until his counts start to grow.
So Brandon will be staying with his father and (most of the time) with my brother Bob, his wife Diane and their two boys. We really are lucky that they were willing to let him "move in" for the time being, they live on a beautiful farm and they have a ton of things for the boys to do. Brandon feels so at home there, so it only seemed natural to have Brandon stay while we're busy.
Well I better sign off now, I would like to just say thank you to all of you who are praying for us....
Please have a nice rest of the summer, and enjoy.
Hug your kids.
Lots of love,
Dawn

Friday, July 4, 2003 10:49 AM CDT

Dear Famliy and Friends,
I just realized that it has been one month since my last entry. The reasons that I havent been updateing this is only because there has'nt been a whole lot going on. We are not yet in stem cell trans plant.... It's been put off because of Justin's battle with the norwalk viris, he still has very bad diarhea and his doctors want him to be as well as possible before moving forward to the stem cell. From what I have heard Justin will be sicker than I have ever seen him while going through this. So the date that we are shooting for will be on the 14th of July. Can you believe that this is our first holiday home???? I know I should'nt speak so suddenly, the day is just beginning.... I truely hate the waiting, we went through six rounds of chemo in five months and now nothing for two months. I just want to keep moving forward so we can fight this thing. Although I'm not looking forward to the packing... How do you pack for a six to eight week stay in the hospital??? I think that I'll just pack PJs and where them all day long!!!!! Who knows???
I hope that all of you are having a wonderful summer, I can't believe that it's almost half way over. We hav'nt had the chance to do a hole lot. We are pretty much just trying to stay cool.
Well I hope you all have a wonderful forth of July!!
Lots of Love and hug your kids,
Dawn

Wednesday, June 4, 2003 3:06 PM CDT

Dear Family and Friends,
I must once again must apoligize for not keeping all of you informed on how everything is going. To be honest with you, keeping this web page updated has been the farest thing from my mind, I finally have a spare minute and I know that all of you are worried about our little boy's.
As you know we are (hopefully) getting to the middle of Justins treatment, they said that it would take about a year and we are now at the six month mark. I still can't believe that we have come this far, it now seems like a dream, the past six months, my brain is finally turning into mush. I have finally started to feel fear, now that we are entering once again the unknown, our stem cell transplant......
My last entry ended with Justin becoming feverish, well we made it home for a couple of days after that... Justin started complaining of mouth pain, throat pain and his butt started to become sore. I called up to the hospital knowing that it was the beginning of mucositis or more commonly known as mouth sores caused by the chemo, Justin's had them once before. They start in the mouth and then go down his throat, to his stomach, and move their way out the other end. They are very,very painful... So knowing that he has had this before, I knew that I could'nt keep him comfortable without a ton of pain meds. So we made our way up the the hosp. on Thurs. May 15th. He still was'nt holding a fever, they started him on some morphine and we just kind of hung out. I had requested that his nurse put him a schedule to get his pain meds every two hours, but she didn't, she thought that it would be better if Justin would wake up screaming everytime the meds wore off. So anyway Friday afternoon they finally started Justin on a morphine "drip", which is where he can get a certain amount of pain meds per hour, without the nurse having to come in and do it. Well, throughout the day, Justin's face kept getting puffier and puffier, it got really red, and he looked like the big 'ol Stay Puff guy. The doctors realized that he was having a reaction to the mophine. They gave him a bunch of benedryl and changed his meds to something else. Buy this time it's getting pretty late in the day, our reg. doctors are heading out and the night time doctors pretty much just resident's, something just did'nt seem right about Justin, so Joe and I had the nurse get the doctor to come in, he said he was looking funny because he was still having a reaction to the morphine. They just told us not to worry and they gave him more benadryl. Well Joe finally left around 9:00, and yet again Justin did'nt seem right, and I again asked the nurse to get the doctor, I wanted him to come in there and explain to me why in the world my son was still acting so different. The doctor came in and said the same thing, he was still having a reaction, and that the morphine was taking a while to get out of Justins system...... I said okay, sorry to bother you, hopefully I won't see you anymore tonight!!! Second shift nurse left and third shift came in. It was around 11:00, she took one look at Justins auto pain drip pump, said oh my god, is this thing set right? She left, came back in and informed me that my son was being overdosed!!!! The pump was set for ten times the amount of what it was supposed to be. So it ran like that for about four hours. The doctor then came back in they put a pulse Oyx on his finger and a heart monitor, told me to watch him and make sure he does'nt stop breathing. Okay by know it's like midnight, my pour little boy was'nt about to fall asleep, he was soo buzzed up from the meds he sat up and talked for about three hours straight!!! I don't know if any of you have ever listened to a very buzzed two year old little boy, but I must say it was a little crazy.
I know that your all wondering what our lawyer has said and your prob. wondering why were still going to the same hosp. But it's weird, I never once thought about the fact that I could have lost Justin, as a mother your brain does'nt allow you to think like that. You just kind of let it go... To this day, I refuse to ask what if, we also have refused to ever have that nurse again, and yet we will forever be indebted to the nurse that came in and found the mistake. Like my sister in law said, God is sure watching over him....
My family and I also went through a very big loss the week we were in (5-15 to 5-23) My cousin, Gary passed away, he was motor cross racing (practice) on Sat. the 17th and he had an accident, I'm not sure what happened. He suffered severe head trama (yes he had a helmet on). The motor crossing was something that was a hobby that Gary, his wife, and his two sons loved to do together as a family. He was just 41, he married his collage sweetheart,he was the father of two young boys 13 and 14, he was one of the most handsome men I have ever known, he was so very kind, loving and successful. I can't say that Any of us cousins spend a whole lot of time together, not like when we were younger, but the love never goes away. And once we are all back together, it doesnt feel like anytime has passed!!! Gary's funeral was on May 27th. I was unable to attend, for this thing that has taken over my son's life, would'nt let it happen. It truely was one of the saddest days of my life, I could'nt go to give Julie a hug, or to say my goodbyes, life is so unfair. I did get a chance to see Gary and Julie, he was at the same hospital as Justin and I were staying at, one floor below us. The only thing that I remember saying to Julie was it's just not supposed to be like this...... She was the one who had to make the toughest choice in the world, he was on life support, I will never even begin to understand!
Justin was admitted back in the hospital on May 26th, for fever. We got up there rather late around 10:30. The plan was of course that Joe would come up to stay with Justin on tuesday, and I would be able to leave and go to the funeral. Well, the nurses woke me up at around 5:00am to inform me that we were going to the PICU, which is the childerns ICU, I knew that things werent good but I didn't think that they were that bad. Justins blood pressure kept dropping, it got down to 60 over 30. This was not good. It truely was the first time that I was really, really scared!!! They realized that Justin had a infection in his hickmen, and that was causing the low blood pressure. They gave him some blood to try to boost his pressure, and some heart meds to also try to give him a boost. He finally was stable around noon. They waited until about 5:00pm to finally pull that line out. We were in the hospital until Thurs. May 29th.
This week so far has been filled with tests trying to prepare for the stem cell transplant. Tomarrow Justin will get his new line put in.
I guess I should sign off now, it's getting late.
I wanted to remind all of you how very fast life can change, it's so easy to forget and it's even easier to take things for granted, if I have learned anything from all of this I have learned that.
God bless all of you, take care and hug your kids.
lots of love,
Dawn
P.S. I came across this little saying
Don't worry about tomorrow

I believe worry comes from the realization that we are powerless to effect change... and our lack of faith in a God who can. At the end of the day when we have done all that we can do, we need to put our trust in a God who is bigger than all of our problems and worries. Worring won't change anything, but God can change everything.

Wednesday, June 4, 2003 3:06 PM CDT

Dear Family and Friends,
I must once again must apoligize for not keeping all of you informed on how everything is going. To be honest with you, keeping this web page updated has been the farest thing from my mind, I finally have a spare minute and I know that all of you are worried about our little boy's.
As you know we are (hopefully) getting to the middle of Justins treatment, they said that it would take about a year and we are now at the six month mark. I still can't believe that we have come this far, it now seems like a dream, the past six months, my brain is finally turning into mush. I have finally started to feel fear, now that we are entering once again the unknown, our stem cell transplant......
My last entry ended with Justin becoming feverish, well we made it home for a couple of days after that... Justin started complaining of mouth pain, throat pain and his butt started to become sore. I called up to the hospital knowing that it was the beginning of mucositis or more commonly known as mouth sores caused by the chemo, Justin's had them once before. They start in the mouth and then go down his throat, to his stomach, and move their way out the other end. They are very,very painful... So knowing that he has had this before, I knew that I could'nt keep him comfortable without a ton of pain meds. So we made our way up the the hosp. on Thurs. May 15th. He still was'nt holding a fever, they started him on some morphine and we just kind of hung out. I had requested that his nurse put him a schedule to get his pain meds every two hours, but she didn't, she thought that it would be better if Justin would wake up screaming everytime the meds wore off. So anyway Friday afternoon they finally started Justin on a morphine "drip", which is where he can get a certain amount of pain meds per hour, without the nurse having to come in and do it. Well, throughout the day, Justin's face kept getting puffier and puffier, it got really red, and he looked like the big 'ol Stay Puff guy. The doctors realized that he was having a reaction to the mophine. They gave him a bunch of benedryl and changed his meds to something else. Buy this time it's getting pretty late in the day, our reg. doctors are heading out and the night time doctors pretty much just resident's, something just did'nt seem right about Justin, so Joe and I had the nurse get the doctor to come in, he said he was looking funny because he was still having a reaction to the morphine. They just told us not to worry and they gave him more benadryl. Well Joe finally left around 9:00, and yet again Justin did'nt seem right, and I again asked the nurse to get the doctor, I wanted him to come in there and explain to me why in the world my son was still acting so different. The doctor came in and said the same thing, he was still having a reaction, and that the morphine was taking a while to get out of Justins system...... I said okay, sorry to bother you, hopefully I won't see you anymore tonight!!! Second shift nurse left and third shift came in. It was around 11:00, she took one look at Justins auto pain drip pump, said oh my god, is this thing set right? She left, came back in and informed me that my son was being overdosed!!!! The pump was set for ten times the amount of what it was supposed to be. So it ran like that for about four hours. The doctor then came back in they put a pulse Oyx on his finger and a heart monitor, told me to watch him and make sure he does'nt stop breathing. Okay by know it's like midnight, my pour little boy was'nt about to fall asleep, he was soo buzzed up from the meds he sat up and talked for about three hours straight!!! I don't know if any of you have ever listened to a very buzzed two year old little boy, but I must say it was a little crazy.
I know that your all wondering what our lawyer has said and your prob. wondering why were still going to the same hosp. But it's weird, I never once thought about the fact that I could have lost Justin, as a mother your brain does'nt allow you to think like that. You just kind of let it go... To this day, I refuse to ask what if, we also have refused to ever have that nurse again, and yet we will forever be indebted to the nurse that came in and found the mistake. Like my sister in law said, God is sure watching over him....
My family and I also went through a very big loss the week we were in (5-15 to 5-23) My cousin, Gary passed away, he was motor cross racing (practice) on Sat. the 17th and he had an accident, I'm not sure what happened. He suffered severe head trama (yes he had a helmet on). The motor crossing was something that was a hobby that Gary, his wife, and his two sons loved to do together as a family. He was just 41, he married his collage sweetheart,he was the father of two young boys 13 and 14, he was one of the most handsome men I have ever known, he was so very kind, loving and successful. I can't say that Any of us cousins spend a whole lot of time together, not like when we were younger, but the love never goes away. And once we are all back together, it doesnt feel like anytime has passed!!! Gary's funeral was on May 27th. I was unable to attend, for this thing that has taken over my son's life, would'nt let it happen. It truely was one of the saddest days of my life, I could'nt go to give Julie a hug, or to say my goodbyes, life is so unfair. I did get a chance to see Gary and Julie, he was at the same hospital as Justin and I were staying at, one floor below us. The only thing that I remember saying to Julie was it's just not supposed to be like this...... She was the one who had to make the toughest choice in the world, he was on life support, I will never even begin to understand!
Justin was admitted back in the hospital on May 26th, for fever. We got up there rather late around 10:30. The plan was of course that Joe would come up to stay with Justin on tuesday, and I would be able to leave and go to the funeral. Well, the nurses woke me up at around 5:00am to inform me that we were going to the PICU, which is the childerns ICU, I knew that things werent good but I didn't think that they were that bad. Justins blood pressure kept dropping, it got down to 60 over 30. This was not good. It truely was the first time that I was really, really scared!!! They realized that Justin had a infection in his hickmen, and that was causing the low blood pressure. They gave him some blood to try to boost his pressure, and some heart meds to also try to give him a boost. He finally was stable around noon. They waited until about 5:00pm to finally pull that line out. We were in the hospital until Thurs. May 29th.
This week so far has been filled with tests trying to prepare for the stem cell transplant. Tomarrow Justin will get his new line put in.
I guess I should sign off now, it's getting late.
I wanted to remind all of you how very fast life can change, it's so easy to forget and it's even easier to take things for granted, if I have learned anything from all of this I have learned that.
God bless all of you, take care and hug your kids.
lots of love,
Dawn
P.S. I came across this little saying
Don't worry about tomorrow

I believe worry comes from the realization that we are powerless to effect change... and our lack of faith in a God who can. At the end of the day when we have done all that we can do, we need to put our trust in a God who is bigger than all of our problems and worries. Worring won't change anything, but God can change everything.

Tuesday, May 13, 2003 7:12 PM CDT

Dear Family and friends,
Hello,
I can't believe that its almost the middle of May and I hav'nt written anything on this website yet!!! Talk about taking a little break!! Things have been really good with us the last few weeks, I truely don't have a complaint. I actually had the chance to spend mothers day at home, it was the first holiday this year, and it was the best!!!! I couldn't have been happier.. We also had the chance to go to church since this all started, which truely made our day! It made me want to cry tears of joy knowing that we have so much support not only from friends and family, but from our church, this town we live in, we have support and prayers from people that we dont even know, and we prob. never will know. Sometimes when I stop to think about that, I become so very overwhelmed, I know that I am so very lucky that I'm not going through any of this alone. So I would really like to thank all of you for all that you have done for us, for the support and the prayers, for the smiles and all those "hang in there" looks, for the love and the blessings. I don't think that there are any words that I could think of that would describe what it has meant to our family. I can only hope that I can raise my boys to become wonderful people like all of you have been to us..
Now about Justins treatment.... We just got done with round six of chemo, and now as I'm writting he is starting to feel feverish!!! So I will need to cut this entry short. Justin is still hanging on to that darn norwalk... Our doctor even tried this IV drug on him in hopes to help boost his immune system, he took it oral for ten days, I don't think that it helped at all, cuz he still has it. It was pretty much a shot in the dark.
We have transplant on the calender for June 9ht, thats only if Justin is ready. We have a ton of tests to go through before we move forword to that.
Well, I will keep you all informed!
Take care, god bless, and thanks again!!!
Lots of love and hug your kids!!!!
Dawn

Tuesday, April 29, 2003 4:42 PM CDT

Dear Famliy and friends,
Hello,
I hope your all doing fine and that your enjoying the weather.
Sorry that I did'nt update this right when I found out, last thurs. I got a call from Justins doctor saying that after talking to Justin's surgeon and one other neuroblastoma specialist, they came to the concusion that Justin did'nt need surgry at this time and that we were going to just move ahead to the sixth round of chemo. Finally we got some really good news!!!
So we've just been hanging out enjoying the weather and the time that we can spend at home... Kind of like the calm before the storm. Justins round six is set for Tues the 6th. I can't wait to get that one over with, then move ahead and get all this done.... Justin thinks that he's done with the doctor for good, seeing as we've been home for almost a week straight, knock on wood!!!!
Well, I don't really have a whole lot of other news!
Thank you all for the prayers, somebody sure is listening!
Lot's of love, god bless, and most of all hug your kids!
Dawn

Wednesday, April 23, 2003 10:35 PM CDT

Dear family and Friends,
I hope all is well with all of you and I hope that you are all enjoying the spring weather that we are finally having.
Well, we have been quite busy lately... Justin ended up in the hospital again on Easter sunday, just when we thought that we would have a nice holiday at home. Joe and I still have to hide easter eggs and baskets and pretend that the easter bunny was really late this year!!
Anyway's, Justin ended up getting a fever at home of about 102, so we called the hosp. and we were on our way, by the time we got up there his fever was at 105. They did the normal blood draws to check for bacteria, and they showed growth in about four hours. (normally the tests take a good 12 hours to come back positive!!) So he had a massive infection going on in that little body of his!! Not alot went on while we were there, we just had to stay until today to make sure that he no longer had anything growing in his blood.
We did get some good news about the cat scans that were done a few weeks back, they couldnt find any "spots" on the X-Rays, I guess the spots that were by Justins heart and his colon are gone. In other words I was told that he has a normal little body, except for the fact that he's missing a kidney. This is very good news for us, for anyone who has to deal with neuroblastoma, we may still need to go through the "second look" surgry, but at least we know that something is finally going right for our little boy. As of right now Justins surgry is set for Monday, I won't know 4-sure until friday what the doctor will decide. But either way I know that we are doing the best we can for him and it truly is out of our hands. A part of me wants the surgry because I want them to physically see that there arn't any more tumors or infected spots, then again, I don't really want to put my son through more then what be needs to go through. It's such a tough call thank god it's the doctors and not mine.
So after surgry we recover and then we go on to the round 6 of the chemo and then after we recover from that we'll do the stem cell transplant. So hopefully we don't have any set backs and we can just keep moving ahead with his treatment.
I'll be in touch, I hope you all had a great Easter!!! Take care, Lots of love and hug your kid's!
God Bless,
Dawn

Wednesday, April 16, 2003 12:01 AM CDT

Dear Famliy and Friends,
Hello, hope all is well with all of you.
We got home on Sat. morning and Justin is doing really well. We had a very, very hard week last week, just when I think it can't get any worse it always does. I don't even know where to start to try to explain. Lets see... When they do labs to check on Justins white cell count, platlets, and so on, they also check on his electrolytes which includes his sodium, potassium, calcium, and so on. Well Justins levels were all screwed up due to the chemo and the diarhea. So the doctors were trying to work on getting the electrolytes back on track along with trying the fight an infection, and trying to get his white count normal and his platlet count and his hemoglobin. It was a very long week because nothing was working. Justin started retaining water he gained about five pounds in 24 hours, he was in so much pain because of it he needed double doses of morphine to control the pain, his feet looked like little balloons, and his legs cramped up so bad that he just laided there and screamed. His potassium levels were so low that it could of been fatal for our little boy, I guess potassium has alot to do with your heart, so he had to be on monitors for three days. But finally they got it all under control and sent us home. That week is now done with and it's time to just look at it like, only one more round of chemo left. We are so close to getting this all over with.
We also had another cat scan and a bone scan done while we were there, we don't have any results yet, and I don't know if we have the nowalk yet either. But I do know when our surgry is, it's going to be on the 28th of this month. I can't wait until thats done.
Well I figured out, we'll actually be home for our first holiday, Easter!!!! I'm so excited, This one really will be the best one.... It's funny how the little things can make you so happy.
When we got home on Sat. we went over to my brothers house, we found that they had gotton two baby pigs, so the boys were pretty happy to go over and see them. Then we went up to their neighbors where they have baby lambs and sheep. Both the boy's thought it was the coolest thing. Justins face just lights up when you ask him about the little baby farm animals. Then we went to pick Brandon up at school and they have baby chickens in the class rooms, so Brandons teacher ( Thank you SOOOO much, Mrs. Z) got a couple of the chicks out so the boys could play with them, it was awsome. I will never forget those moments, or Justins laugh, and the way the boys looked at eachother so happy and grateful almost like the were in their own little worlds, with not a care. Those are the moments to hold on to, not the ones like last week...
I have two very happy and strong little boys and I would'nt change a thing, I truly am blessed!
Well, I should get going, I have alot of other catching up to do. Take Care and God Bless
Lot's of love and Please hug your Kids!!!
Dawn

Tuesday, April 8, 2003 7:12 PM CDT

Dear family and Friends,
Hello! We hope that all is well with you and that your enjoying all this snow in April..... So you must know that were back in the hospital, when a storm comes, it means were headed back in, thats the way its been anyways. We lasted at home until Sat. afternoon, Brandon and I went to his basketball practice (I knew that Justin was starting a fever), came home and packed. Justin got a fever of 102, so that bought us a ticket back... How many days was that???? Four whole days, yeah! We even had Joes brother Buck, sister inlaw Kathy, and their two boys come to visit, it was so nice to see them. But it's sad that we can't ever spend time with them other then hospital time. The boys get along so good together, it's great to watch how they just click. And of course Buck and Kathy picked Brandon up to go to the hotel to swim, so he really had a great time.
So anyway, we get to the hospital, once again Justin has the diarhea, which is no new news to us. The doctor is all concerned so she put us in isolation and wants to do tests for the norwalk. So I get very upset, thinking theres no way he has the norwalk, he's not as sick as he was the last time when he had it. I was thinking it's just the chemo, it needs to run it's course and clear out of his system.... You need to understand, there was no way he had this back, I'm thinking and laughing, just go ahead and waste our money on another test!!! I even told a friend, may lighting strike me down if he's got the norwalk...............
Guess What????? Justin has the norwalk, I guess he has always had it, when they did the last test it must have been dorment(?). Boy Oh Boy do I ever feel like an idoit!!! So much for knowing everything. I must say, I am a little pleased, maybe we might have an end to all this diarhea. The doctor is going to make some calls to see if we can try some diff. kind of meds that will help the body fight the viris off once and for all.
Other than that his counts are slowly rising and we should be home on Fri. I hope. Just when the weather gets nice!!! We still hav'nt heard any word from our doctor about Justins surgry and when that will be.. I'm thinkin the last part of this month. But we'll keep you informed.
I best get going now, it's getting late and Joe has to drive home yet. He's been getting up eariler and earlier, so he needs his beauty rest! justkidding!!!
God Bless, Lot's of love and Hug your kids BIG!
Dawn
P.S. norwalk, give me a break

Friday, April 4, 2003 7:22 PM CST

Dear Family and Friends,
Hello, Can believe all this snow?? The weather here is awful, I must say that I am pleased, because Justins counts are almost at zero, I am unable to go anywhere. So I don't have that guilt of not getting anything done outside!!! Yes it's supposed to be spring, but than again nothing is what it's supposed to be anymore, why should the weather be any different??
I think the thing I hate the most about this, is that when Justin gets done with his chemo, he gets to come home, he's very,very sick, then his counts just crash, then it's a big waiting game to see when his fever will set in. You never really know when it will be, we have ended up at the hospital at midnight before.
Actually I'm quite happy, we have been home since Monday. So I did get somethings done this past week, just alot of catch up things. We had a really nice day on tues, I think that it was like 70 degrees outside, so Justin and I went and picked up Brandon from school and then we met my sister and her son Cody at a little park. Brandon and Cody played spiderman (Brandons new thing), and Justin and I played on the jungle gym, we went down the slide and had a ton of fun. We then came home grabbed the joggers cart and went for a really long walk down to my parents woods. We looked for deer and turkey tracks (yes we had some luck too). Joe had found a note that I had left for him at home and brought the four wheeler down to walk with us. We had such a great time. The sad thing is, that was the very first walk we all took together, the four of us, our family. I could'nt even tell you why that was, but I can tell you that it was one of the best days. It was one of those days that you don't ever want to end. It's so, so strange how much a person can truely change over such a short time. While growing up my mom always said the saying, " Take time to stop and smell the flowers", and I would always say, "What flowers?" (while stepping on them). Once again, I sure have learned what that means!!!
Joes work days are starting to get long already, I think that he's been on 12 hour day's. But I must say his work really is good about letting him cut out a little early if he needs to.
Brandons starting Basketball tomarrow morning, he's very excited, it will last for four weeks. Justin won't be able to go because of his counts, so Brandon and I will have to sneek out of the house so Justin doesnt have a fit. So wish us luck!!!
I should get going, Take care everyone!!!
God Bless, Lots of love, and Hug your Kids,
Dawn

Saturday, March 29, 2003 2:27 PM CST

Dear Family and Friends,
Ha, Ha, I get to be snuggled in the hospital, while all of you have to be out in this yucky weather!!! I think someones watching over us.... It's only not snowed once since we have been coming up here for treatment. And I have yet to be home for a holiday since X-mas, we even spent St. patty's Day up here. No green beer for Dawn....Nope, Nope, Nope....
Justin is handling this chemo treatment (knock on wood) very well, this is the "other" kind I told you about, the cisplatin, it's the worst type of chemo for getting nausea. Justin's only lost his cookies once so far, and he's still keeping up his appetite. This type of chemo is also known for hearing loss and kidney damage, yes, those are the common side effects. But this type of chemo also is the best one for killing the neuroblastoma cells. So our doctor called us to ask us if we wanted to go ahead with the cisplatin knowing of the damage that Justin already has, as if we have a choice, and of course I said yes. Joe was a little taken back that I made the choice without him, but we all know how men are, they need a moment to let everything sink in first. Yes, maybe all the neuroblastoma is dead, maybe there's no need for the cisplatin, seeing how much Justin has already lost in his hearing, and the fact that the poor little kid only has one kidney, do we want to damage that one and take all these chances??? Well there really is no good answer the only thing that I do know for sure is that we only have one good shot at killing this cancer and if we don't do all that we can do now.... We won't get a second chance if it does come back.
So here we are hooked up to the evil poison that once again could change our lives forever, and boy we have our fingers crossed. The funny thing is if you could see Justin right now, you would never even know that he was sick. He's talking up a storm and laughing like crazy at his big brother, other than being a little tired and bald of course, he's doing great. I wish that everyone that reads this site could just see him and how happy and strong he really is, it makes it so much easier for me too.
I think what helps alot to is the fact that neither of the boys have a clue of what a huge fight that we have already fought and what lies ahead of us. So life still seeems a little normal. I have a new little saying... Home is where Mom is. We're just happy being together, it really does'nt matter where!!!!
Hope all of you are very well... Keep up all the prayers, I really believe in my heart that god is listening.
Take Care, God bless,
Lot's of Love and give your kids BIG hugs,
Dawn
P.S. should be home on Monday.

Tuesday, March 25, 2003 10:14 PM CST

Dear Family and Friends,
Hello, Sorry it's been so long since I've up dated this website. Things are a little crazy around here.
Lets see, where did I leave off??? We headed back to the hospital on the 15th, because Justin had a fever, it was an all around hard stay. Joe went back to work on that following Monday (the 17th), I tell you it was a real eye opener for me. I had to take care of little Justin all alone and when he's not feeling real good it's not an easy task, so I was grounded to our room for six days. Yes we were there until Friday afternoon. I don't think I could be anymore homesick, I think it's even harder to be gone from home now that the weather is getting so nice. Theres so much that I want to get done around the house and the yard, but I guess it will just have to wait until next year. It was also quite hard on Justin this trip, he missed his dad and brother alot, I think that he's just getting alittle sick of the whole thing. And I can't blame him, the treatment that they put these kids through is unbelieveable. I also now know what happens to a child when their body doesn't want to except the platlets that are being transfused into their system. My little boy sat in my arms and shook nonstop for at least 30 minutes until the meds they gave him "kicked in" I was so, so scared. And I felt so very helpless, nothings going to surprise me after this year. I swear to god that I would'nt wish this on anyone.
We also found out some other info... Justin will go through surgery a second time, his surgeon wants to make sure that he got every bit of tumor that was in there and also he wants to check out those two other spots that showed up on the c-scan. This is what they call a "second look" surgery. It will be done after his counts are back up from his 5th round of chemo, and they will use the same incision that they did the last time. Then after Justin recovers from that he'll go through round 6, then the stem cell transplant.
We also found out that Justin already has moderate hearing loss from the chemo and after these next treatments he may require a hearing aid.... Oh well, I've always wanted to learn sign language!!! I am a little concerned about his last kidney functioning test, his results were down, but the doctors really don't seem like it's a big deal, and hey, they know a heck of alot more then I do.
Well our next round (the 5th)of chemo is this thurs (the 27th). It's crazy, I just got home a couple of days ago. It's also Brandons spring break this week, Justin and I are so happy, we get to hang out with Brandon all week. I miss him so very much when I up at that hospital I can't stand it, I know that it's selfish, but I just want Brandon to be with me no matter where I am. He is still doing very well in school, his teacher says that he's where he should be and that other than missing Justin and I he seems to be handling this all very good. Like I've said before, I really am blessed to have such a good boy.
I suppose I should get going now... I think that all is caught up now. Just wanted to say thank you all so very much, keep praying, our little Justin needs it.
Take Care, enjoy the weather!!!!
Lots of love and hug your kids,
Dawn

Wednesday, March 12, 2003 3:58 PM CST

Dear Famliy and Friends,
We hope you are all doing good and staying healthy in this crazy weather... It finally looks like spring may be coming around the corner.
We finally made it hope. We went in for Justins chemo treatment on friday the 7th of march and we got home yesterday (tues). We were only supposed to stay until monday but Justin didn't get "hooked up" to his chemo until late Friday night. So he needed to have fluids until late on monday night. We did get a couple of tests out of the way on tues so that saved us an extra run back to the hospital. The tests were his kidney functioning (called a GFR) test, and also he needed a hearing test. He needs both so we can basically see what type of damage the chemo has caused so far. And no I don't have any results yet. So were keeping our fingers crossed that all is still good. One other problem arose while we were in the hospital.... On Monday while Justin was having a bowel movement he ended up pushing out part of his rectum. The surgeons had to come and push it back in, thank god they could without having to do surgry. I guess this is seen with patients with cronic diahrea, so Justin was put on an anti-diahrea med. which isn't helping the diahrea but it also isn't letting him push so hard. So basically we have to keep an eye on this and if it continues to happen he'll have to have surgry to fiw the problem. Which he can't have surgry because his "counts" will be at zero it just a couple of days.. So once again we have our fingers crossed.
Other than all of that Justin is doing GREAT, he only through up once during this treatment, he's getting around alot better then he has since X-mas and he's finally got that awsome laugh back that we all know and love. As I sit here and type Brandon and Justin are playing deer hunter, where Brandon is the deer and Justin has to run after him and get him. Justin is also talking up a storm, you truely would never even guess that he's sick.
I really do feel blessed, when I hear my boys laughing like they are right now, life couldn't be better!!!
Thank you all so much for the prayers, and all the support, until you go through something like this, you'll never know how much it means... Thank You.
God Bless all of you, and Please take care.
Lots of love and hug your kids,
Dawn

Monday, March 3, 2003 4:28 PM CST

Dear Family and Friends,
Hello, I hope all is well with all of you and your families. I would also like to say thank you so much for all of your words in our guest book, also all of your support and all your prayers. We truely are blessed to be in all of your thoughts through all of this. I makes it much easier for our family.
Now I'm sure your all wondering how our tests came back.... Well, Justin no longer has the lovely Norwalk sickness, so that was good news for us. But he does still have the diarrhea, which the doctors are finally getting a little concerned about... And now for our wonderful cat scan results, there still is two spots in Justins stomach area that showed up as "not normal" . Now we aren't sure what that means, the surgeon, Dr. Go has to look at the results. It could be the two lymph nodes that Dr. Go left in there or it could be new tumor, it could be scar tissue from his surgery. What we do know is that if it is tumor that is still alive and growing that it is to close to his Aorta to remove. Which will mean that they will probably need to do a "second look" surgery after his fifth treatment. So they'll have to open him up all over again. I guess I'm speachless, things seemed like they were going pretty well for the most part, I was more worried that the cancer would come back in the future, not that we couldn't get rid of it now. But hey, oneday at a time.
We were supposed to go in for our round 4 of chemo tomarrow, but because of Justins diarrhea his doctor wanted to wait until Friday. That gives us a few more days at home, which is good because I did'nt even pack yet.... I'll be in touch, God Bless , Please hug your kids, and Lots of Love.
Dawn

Tuesday, February 25, 2003 4:50 PM CST

Dear family and friends,
I bet your all wondering what happened to us???? Well we just got home from the hospital about an hour ago.... What a nightmare, we went up friday because Justin had a fever, which could mean that he has an infection. So either way we have to wait 24 hours before coming home. I think the worst thing was that they put us in isolation because of the norwalk virus, which they don't even know if he still has it. Justin is also having a little problem with his legs, one foot is colder than the other. Our doctor thinks that he could have nerve damage from his surgry. So they had cardio vascular(?) tests done on him to check his blood flow. They also did a cat scan on him, to try to see why his diarrhea will not go away, I also wanted to make sure that his tumor wasn't coming back.
We have not gotten any of our tests back yet, they said that they should be back tomarrow. This was just an all around hard stay on all of us, theres so many unanswered questions that we have, waiting for all these tests. I think that this whole diarrhea (and throwing up)thing is the hardest to deal with. I don't know if its the chemo, the norwalk, or something wrong with his intestines. I was also told that one sign of neuroblastoma is diarrhea. Hopefully we'll find out soon. Justin was really sad this time too, the doctors said that this round of chemo (called Cisplatin), is the strongest and that it takes alot out of them, they didn't say that it would take away his smile.... But I guess taking away the cancer is more important right now!!
Well we're finally home, getting all ready for our next treatment, which is next tues.
I hope all is well with all of you, I will be intouch with the test results. Thank you all so much for the prayers. And thank you for signing in our guestbook, it really makes our day to know that all of you are thinking about us and that you take the time to keep in touch.
Thanks,
God Bless and hug your kids...
Lots of love,
Dawn

Sunday, February 16, 2003 3:41 PM CST

Dear family and friends,
Hello, we hope all is well with all of you!!! We got home last night around 5:00pm. Justin had a really bad night on friday. He was very, very sick. I think the worst part of all of this is that there's nothing that I can do, except sitting and rocking him in a chair. Justin had to get a blood transfusion yesterday before we even got sent home, his counts were already pretty low, so I'm just going to get packed up again, I'm sure we'll be back up at the hospital sometime this week. And guess what else..... The nurse from the hospital called last night around 7:00pm to inform us that one of Justins tests (on his stool)came back positive for the Norwalk virus. The "cruise ship sickness" as its otherwise known. So they think thats why he's been so sick. Everything that he eats comes right back up, thank god we got set up with the fliuds before we even left the hospital, otherwise we'd be back there already. None of us have it yet, but the nurse said it takes a good 24 hours before it shows up. We're thinking that he may have gotten it from the hospital, we did'nt really go anywhere else this week.
Our poor, poor little boy, what next?????
Well one day at a time, hopefully this will be over soon.
Take care, please stay healthy and hug your kids,
lots of love,
Joe Dawn Brandon and Justin
P.S. hope you all like the new pictures!!!

Friday, February 14, 2003 4:07 PM CST

Dear Family and Friends,
Happy Valenines Day!!!!! I hope everybody had a good one. As you know we got to spend ours up in the hospital. Joe and I just figured out that we have spent every holiday up here since Justin has been diagnosed. I have to say it was very fun though, we actually kept Brandon home from school (yes, bad, bad parents) so him and Justin could hang out up here. There was a party that was given by a medical supply company. We had pizza hut pizza, cake, cotten candy and all kinds of good treats. They had five different activities going on. Bucky badger was here, the boys got to have their picture taken with him (mom too), and also they brought in a football player from the U.W. the boys also got a picture with him too. If any of you know Brandon, you will know that he was very, very happy!!!! He even had the football player sign his picture.
Justins now taking a nap. He is so tired from today, and also his chemo treatment. He has done well this time, he's only gotten sick about four times so far and tonight is his last round of chemo, he will need fluids for ten hours after and then we can head for home. I can't wait, I'm getting home sick this time... And I know that Justin is too. The doctor's are going to send us home with fluids this time, so we're getting a pump from our home health care providers. The doctors are a little concerned about the fact that Justin has had diarrhea since he has had his surgery. So they want to try to keep up on his hydration. Joe and I were talking about how after all of this I should go back to school for nursing. I think i'll be half way there!!!
Just wanted to say HAPPY VALENTINES DAY!!!!!!
Take care, Thanks for all the support and all the prayers, hug your kids.
Lots of love,
Joe Dawn Brandon and Justin

Friday, February 14, 2003 4:07 PM CST

Dear Family and Friends,
Happy Valenines Day!!!!! I hope everybody had a good one. As you know we got to spend ours up in the hospital. Joe and I just figured out that we have spent every holiday up here since Justin has been diagnosed. I have to say it was very fun though, we actually kept Brandon home from school (yes, bad, bad parents) so him and Justin could hang out up here. There was a party that was given by a medical supply company. We had pizza hut pizza, cake, cotten candy and all kinds of good treats. They had five different activities going on. Bucky badger was here, the boys got to have their picture taken with him (mom too), and also they brought in a football player from the U.W. the boys also got a picture with him too. If any of you know Brandon, you will know that he was very, very happy!!!! He even had the football player sign his picture.
Justins now taking a nap. He is so tired from today, and also his chemo treatment. He has done well this time, he's only gotten sick about four times so far and tonight is his last round of chemo, he will need fluids for ten hours after and then we can head for home. I can't wait, I'm getting home sick this time... And I know that Justin is too. The doctor's are going to send us home with fluids this time, so we're getting a pump from our home health care providers. The doctors are a little concerned about the fact that Justin has had diarrhea since he has had his surgery. So they want to try to keep up on his hydration. Joe and I were talking about how after all of this I should go back to school for nursing. I think i'll be half way there!!!
Just wanted to say HAPPY VALENTINES DAY!!!!!!
Take care, Thanks for all the support and all the prayers, hug your kids.
Lots of love,
Joe Dawn Brandon and Justin

Friday, February 14, 2003 4:07 PM CST

Dear Family and Friends,
Happy Valenines Day!!!!! I hope everybody had a good one. As you know we got to spend ours up in the hospital. Joe and I just figured out that we have spent every holiday up here since Justin has been diagnosed. I have to say it was very fun though, we actually kept Brandon home from school (yes, bad, bad parents) so him and Justin could hang out up here. There was a party that was given by a medical supply company. We had pizza hut pizza, cake, cotten candy and all kinds of good treats. They had five different activities going on. Bucky badger was here, the boys got to have their picture taken with him (mom too), and also they brought in a football player from the U.W. the boys also got a picture with him too. If any of you know Brandon, you will know that he was very, very happy!!!! He even had the football player sign his picture.
Justins now taking a nap. He is so tired from today, and also his chemo treatment. He has done well this time, he's only gotten sick about four times so far and tonight is his last round of chemo, he will need fluids for ten hours after and then we can head for home. I can't wait, I'm getting home sick this time... And I know that Justin is too. The doctor's are going to send us home with fluids this time, so we're getting a pump from our home health care providers. The doctors are a little concerned about the fact that Justin has had diarrhea since he has had his surgery. So they want to try to keep up on his hydration. Joe and I were talking about how after all of this I should go back to school for nursing. I think i'll be half way there!!!
Just wanted to say HAPPY VALENTINES DAY!!!!!!
Take care, Thanks for all the support and all the prayers, hug your kids.
Lots of love,
Joe Dawn Brandon and Justin

Wednesday, February 12, 2003 1:22 PM CST

Dear Family and friends,
I hope all is well with all of you, and I hope your all staying plenty warm in this bitter cold weather. And I hope all of you are staying free of that flu bug that is going around.
As for Justin, he got "hooked up" to his third round of chemo yesterday afternoon. They use different drugs on the third and the fifth treatment, so we will be here for four days instead of three. I've heard that this treatment is stronger then the rest, but of course the doctors won't say, they just say that its different. Justin has been eating okay, we put him on an appetite inhanser, and so far he has'nt thrown up. Then again it's early.
We were so happy to be home for as long as we were, our spirits were up and so were Justins. Things almost felt alittle normal for all of us. As most of you know Joe was laid off this winter, before X-mas, which I have to say has been lucky for us. We have been able to keep up with things alot easier than if he was at work. The money is awful, but we'll be fine. I would much rather have Joe be able to spend all this time with his son now than have all the money in the world, you never know what could happen.
It's so strange how on X-mas eve we got a few friends together and bought lottery tickets (that $100 million jackpot), in hopes to win all that money, that sure would make us happy, we thought. Than the next day our life changed so much, in a different way of course, but I tell you I have never in my life prayed for health, and now I would give anything in the world for that. Some time I look around at other families, ones with normal lives, and I wonder if they know how lucky they are, and I wonder what they pray for. Do they pray for health or money? Do those parents cherish their children more then anything? Do they know how lucky they are to be able to play with thier kids in the snow, and to be able to go the an indoor playland and not have to worry about all those germs.
Sometimes I just wonder... People sometimes ask me "how do you stay so strong?" All I can say is, you do what you have to do, and if you could come up to this hosp. and meet some of these families you'll realize that I'm not alone and these parents give me such strength to keep going. I feel such a bond with all of them, and I feel lucky to know them. One day at a time, God gave us that for a reason, I never really knew what that meant either. I sure do now.
Well, I should sign off, Joe wants to get going home so he can plow snow, I guess we got alot of it last night.
Thank you all so much for your support and your prayers, take care, and hug your kids.
Lots of love and God bless,
Joe, Dawn, Brandon and Justin

Thursday, February 6, 2003 8:42 AM CST

Dear famliy and friends,
Well, I will have all of you know that not long after I updated that last journal we ended up back at the hospital around 4:00pm on that thursday, with a fever of course, Justin needed blood and platlets. So we were stuck back up there until late on Monday. We also did Justins stem cell collection, which went really well. They said that they got plenty. I guess alot of kids have to do collection for two of three days, ours took about 2 1/2 hours.
We also received Justins bone marrow biopsy, our doctor said that the test that they did at the UW showed that it was clear and he feels that the chemo is working. But he also said (theres always a but) that he sent some marrow out to California to be tested. I guess the tests they do out there are more graphic, we won't get them back for three more weeks. I also asked our doctor if this means that were in the clear, he said, we won't know that for at least two more years, either way we have our little boy now and thats all that matters. We feel so blessed that we have this time with both of our boys...
I did my first blood draw today. It went pretty well. We need to have Justins labs done every Mon. and Thurs. to see how his counts are. Justin wanted to go with me to drop Brandon off at school, when Brandon got out of the truck and said goodbye, Justin started to cry and then cryed the whole way home. Brandon is the light of Justins life. Once again we are blessed to have such a great older brother, I think Brandon has grown up alot since Christmas. Its not in a bad way though. With Justin spending so much time up at the hosp. Brandon is learning alot about other little kids that are sick and that it is a part of life. He made friends with a little boy that is in a wheelchair and he played with him almost all weekend. You have to understand before Justins cancer, our famliy (the Miller side anyway) never even had a broken bone, not any of us... With seven grandsons (as my dad would say) we are so lucky. So this is new I think for all of us.
Well Justins next Chemo treatment will be tues. feb 11th. they are using different chemicals so this one will be 4 days instead of the 3. But after this one, we'll be half way there!!!!
I should get going. Thank you all so much for your support and your prayers.. You'll never know what it all means to us. Stay healthy, Take care, hug your kids, and god bless.
Lots of love,
Joe,Dawn,Brandon and Justin.

Thursday, February 6, 2003 8:42 AM CST

Dear famliy and friends,
Well, I will have all of you know that not long after I updated that last journal we ended up back at the hospital around 4:00pm on that thursday, with a fever of course, Justin needed blood and platlets. So we were stuck back up there until late on Monday. We also did Justins stem cell collection, which went really well. They said that they got plenty. I guess alot of kids have to do collection for two of three days, ours took about 2 1/2 hours.
We also received Justins bone marrow biopsy, our doctor said that the test that they did at the UW showed that it was clear and he feels that the chemo is working. But he also said (theres always a but) that he sent some marrow out to California to be tested. I guess the tests they do out there are more graphic, we won't get them back for three more weeks. I also asked our doctor if this means that were in the clear, he said, we won't know that for at least two more years, either way we have our little boy now and thats all that matters. We feel so blessed that we have this time with both of our boys...
I did my first blood draw today. It went pretty well. We need to have Justins labs done every Mon. and Thurs. to see how his counts are. Justin wanted to go with me to drop Brandon off at school, when Brandon got out of the truck and said goodbye, Justin started to cry and then cryed the whole way home. Brandon is the light of Justins life. Once again we are blessed to have such a great older brother, I think Brandon has grown up alot since Christmas. Its not in a bad way though. With Justin spending so much time up at the hosp. Brandon is learning alot about other little kids that are sick and that it is a part of life. He made friends with a little boy that is in a wheelchair and he played with him almost all weekend. You have to understand before Justins cancer, our famliy (the Miller side anyway) never even had a broken bone, not any of us... With seven grandsons (as my dad would say) we are so lucky. So this is new I think for all of us.
Well Justins next Chemo treatment will be tues. feb 11th. they are using different chemicals so this one will be 4 days instead of the 3. But after this one, we'll be half way there!!!!
I should get going. Thank you all so much for your support and your prayers.. You'll never know what it all means to us. Stay healthy, Take care, hug your kids, and god bless.
Lots of love,
Joe,Dawn,Brandon and Justin.

Thursday, February 6, 2003 8:42 AM CST

Dear famliy and friends,
Well, I will have all of you know that not long after I updated that last journal we ended up back at the hospital around 4:00pm on that thursday, with a fever of course, Justin needed blood and platlets. So we were stuck back up there until late on Monday. We also did Justins stem cell collection, which went really well. They said that they got plenty. I guess alot of kids have to do collection for two of three days, ours took about 2 1/2 hours.
We also received Justins bone marrow biopsy, our doctor said that the test that they did at the UW showed that it was clear and he feels that the chemo is working. But he also said (theres always a but) that he sent some marrow out to California to be tested. I guess the tests they do out there are more graphic, we won't get them back for three more weeks. I also asked our doctor if this means that were in the clear, he said, we won't know that for at least two more years, either way we have our little boy now and thats all that matters. We feel so blessed that we have this time with both of our boys...
I did my first blood draw today. It went pretty well. We need to have Justins labs done every Mon. and Thurs. to see how his counts are. Justin wanted to go with me to drop Brandon off at school, when Brandon got out of the truck and said goodbye, Justin started to cry and then cryed the whole way home. Brandon is the light of Justins life. Once again we are blessed to have such a great older brother, I think Brandon has grown up alot since Christmas. Its not in a bad way though. With Justin spending so much time up at the hosp. Brandon is learning alot about other little kids that are sick and that it is a part of life. He made friends with a little boy that is in a wheelchair and he played with him almost all weekend. You have to understand before Justins cancer, our famliy (the Miller side anyway) never even had a broken bone, not any of us... With seven grandsons (as my dad would say) we are so lucky. So this is new I think for all of us.
Well Justins next Chemo treatment will be tues. feb 11th. they are using different chemicals so this one will be 4 days instead of the 3. But after this one, we'll be half way there!!!!
I should get going. Thank you all so much for your support and your prayers.. You'll never know what it all means to us. Stay healthy, Take care, hug your kids, and god bless.
Lots of love,
Joe,Dawn,Brandon and Justin.

Thursday, January 30, 2003 at 09:04 AM (CST)

Dear Family and friends,
We hope all is well with all of you. We are doing good this week, we got released form the hosp. on Friday the 24th. Which was also the day that my sister Deb had a little fund raiser of her own, she works as a waitress at a truckstop here in Johnson Creek. Not only did her tips go towards Justin's fund, but the owners of the truckstop (The Pine Cone)matched what she made on that day. Her boss was great in supporting her and so were her coworkers. Also on Sunday Jan. 26th a local hair salon, J and A studio held a benefit for Justin, they donated all their profits for the day to us. We truely are completely amazed by the way all these total strangers are here offering their support to us. It makes this jounery that we are on a little easier to bare.
On monday the 27th Justin had a kidney functioning test. They just inject him with some kind of a dye and then I think they see how long it takes to run through his body, the whole test is about four hours long... We got the results back, his one kidney is really working well, just as it should the doctor said..
So, yesterday we had Justins bone marrow biopsy. This is one of the tests that will tell us if the chemo that they are using is working. There three different answers we could get... (1) The amount of neuroblastoma is the same, (2) The amount is more or (3) there is no more neuroblastoma in his marrow....
We won't know until monday Feb. 3ed I didn't think I could pray so much, or once again be so afaid of what we are going to hear.
If all goes well Justin will be doing his stem cell collection on Tues. Feb 4th. We'll try to keep this updated.
We thank all of you so much for all your prayers and all your support..
Lots of love, Please stay healthy, and most of all hug your kids!!!!
Joe, Dawn, Brandon, Justin

Wednesday, January 22, 2003 at 03:04 PM (CST)

Dear friends and famliy,
I'm sorry that it's been so long since our last entry. Things have been a little crazy. We thought that Justins first round of chemo went great, well on Sat. Jan. 11th we ended up in the hosp. because Justin had started to run a fever. The nurses took some of his blood to check his "counts" and sure enough he had no white cells (which fights off infections) and his platlet (they are what helps the blood clot) counts were really low. So they kept us here.... Justin had received a blood transfusion, along with a platlet transfusion while we stayed. Finally his counts started to rise on Wed. the 15th. I guess this is really very common with the strength of the chemo that Justin is getting. I was barely unpacked, and caught up with the things at home and then we were off again.
Joe and I pulled Brandon out of school on Thurs and Fri. I called Brandons teacher and she was so wonderful and understanding, she even gave us some of his class work so he wouldn't fall behind. I kept Brandon up at the hosp. with Justin and I on Thurs night and sent Joe home to get some rest. So the boys and I had a little party, we like to try to pretend that this is our hotel and that were on vacation somewhere....
We all got to go home on Friday afternoon. And our doctor told us that we would be taking the week off without chemo (he was supposed to come in on thurs. the 23ed) because they wanted to wait until Justins counts got higher. But we were also told to come back on Sun. the 19th to check his counts because his platlet count was still quite low.
So friday night the boys and I had a campout on the livingroom floor and stayed up way to late that night... On Sat. we just pretty much hung out and took it easy. Brandon and I went to a 4H basketball game, while Joe and Justin played deerhunting on the computer. Then we all went over to my brother Bob and his wife Diane's house and had a great time. It actually felt like we were home.
then our dreaded sunday trip came and we were told that now Justins counts were so good, we could start chemo on Tues. the 21. My heart just dropped.... All I wanted was one week home, to somehow try to get back to normal. But then again, What is normal anymore????
So were back, at our second home (as we like to call it). I should get going. I will try to keep this updated, as you know I really have'nt had time.
We want to thank all of you so much for your support and your cards and most of all, your prayers.
Lot's of love and hug your kids....
Joe Dawn Brandon And Justin

Wednesday, January 22, 2003 at 03:04 PM (CST)

Dear friends and famliy,
I'm sorry that it's been so long since our last entry. Things have been a little crazy. We thought that Justins first round of chemo went great, well on Sat. Jan. 11th we ended up in the hosp. because Justin had started to run a fever. The nurses took some of his blood to check his "counts" and sure enough he had no white cells (which fights off infections) and his platlet (they are what helps the blood clot) counts were really low. So they kept us here.... Justin had received a blood transfusion, along with a platlet transfusion while we stayed. Finally his counts started to rise on Wed. the 15th. I guess this is really very common with the strength of the chemo that Justin is getting. I was barely unpacked, and caught up with the things at home and then we were off again.
Joe and I pulled Brandon out of school on Thurs and Fri. I called Brandons teacher and she was so wonderful and understanding, she even gave us some of his class work so he wouldn't fall behind. I kept Brandon up at the hosp. with Justin and I on Thurs night and sent Joe home to get some rest. So the boys and I had a little party, we like to try to pretend that this is our hotel and that were on vacation somewhere....
We all got to go home on Friday afternoon. And our doctor told us that we would be taking the week off without chemo (he was supposed to come in on thurs. the 23ed) because they wanted to wait until Justins counts got higher. But we were also told to come back on Sun. the 19th to check his counts because his platlet count was still quite low.
So friday night the boys and I had a campout on the livingroom floor and stayed up way to late that night... On Sat. we just pretty much hung out and took it easy. Brandon and I went to a 4H basketball game, while Joe and Justin played deerhunting on the computer. Then we all went over to my brother Bob and his wife Diane's house and had a great time. It actually felt like we were home.
then our dreaded sunday trip came and we were told that now Justins counts were so good, we could start chemo on Tues. the 21. My heart just dropped.... All I wanted was one week home, to somehow try to get back to normal. But then again, What is normal anymore????
So were back, at our second home (as we like to call it). I should get going. I will try to keep this updated, as you know I really have'nt had time.
We want to thank all of you so much for your support and your cards and most of all, your prayers.
Lot's of love and hug your kids....
Joe Dawn Brandon And Justin

Friday, January 10, 2003 at 08:13 AM (CST)

Dear Family and Friends,
We wanted you all to know that Justin is doing quite well. I think that its Joe and I that need help, with keeping all his meds and everything else straight. Anyone who knows either one of us should know that we are not the most orginized people.
Justin's first round of chemo went pretty good. He sure is glad to be home and to be with his big brother again. His face just lights up when Brandon walks in the room, you would never even think that Justin was sick. The two boys are almost inseperable.
I wanted to take a minute to good through a few things about Justin and our last two and a half weeks.
Justin is our two year old little boy... We noticed that he had an enlarged stomach on christmas eve day, we waited to take him to the Watertown hospital until X-mas Day morning. Once there the doctor thought that he had an enlarged splean. He took a cat scan and realized that Justin had a huge mass by his stomach. The doctor told us that he had called the UW Madison Hosp. and that they would be saving a room for us.
Once there blood work was done, and the c-scan was looked over. My husband and I were told that our son had one of two types of cancer- either a wilms tumor which is a cancer of the kidneys or it was neuroblastoma
a cancer of the sympathetic nervous system. We were told to pray for the wilms. Either way, we were set for surgery the next day. After a bunch of X-Rays and more blood tests Thursday arrived. Justin was in surgery for 6 long hours,we were then told that he had the wilms tumor, but they removed it and his left kidney, part of his diaphram, and some "bad lymph nodes". But for the most part he was doing awsome. The next day Friday Dec. 27th Justins doctor came in with some of the results of the biopsy on his tumor and we were told that the doctor was wrong and that our son had neuroblastoma. Now we needed to find out what stage he was in. They needed to test his bone marrow, and yes, the tumor had spread. So we are at Stage four.
Justin has had one of his six chemo treatments, he will need a stem cell transplant and radiation. His chemo will last for 72 hours and if all goes well will be given every 21 days.
We have already gotten his hair cut, and Joe and Brandon will also be getting a very short hair do.
Joe and I would like to thank all of you for your support. You will never know how much it means to us to have all this love and all these prayers.... We truley are blessed!!!
Thank you, take care, and lots of love,
Joe, Dawn, Brandon, Justin

Saturday, January 04, 2003 at 12:57 PM (CST)

Justin was admitted to the hospital on Christmas Day. They removed his left kidney & a tumor. He is diagnosed with a cancer called neuroblastoma. Justin is having his first chemo treatment, it started last night & will go for 72 hours. He didn't get sick, so things are going very well. This morning he had french fries with Daddy & Uncle Jerry.

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