Journal History

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Sunday, November 26, 2006 11:25 AM CST

No news has been good news.......
Jillian has undergone numerous tests over the past six months to look at a variety of spots that have been captured on her scans. The final word this month is that she is still cancer free!!

For whatever reason Jillian has a nodule in her liver that has chosen to begin repairing itself more than three years post BM Transplant and she has a Cyst in her plevis.

School for Jillian has been challenging, as we are sure it will continue to be. But, she is starting to get the hang of putting sounds together to form words which is essential for reading. Her reading is improving, as is her math. You still never know what your going to get from day to day with her though.Some days Jillian does exceeding well and others she just turns herself off. Her teacher agrees! Jillian is behind about 40f her class but, is improving...so her teacher is happy with her progress thus far.

Ian is still crazy. He did have an awful trip to the ER last week and was diagnosed with a Staf infection. Of course, in true Ian fashion he was back up to his old tricks the very next day....amazing!! He can be so sick and still running around at lightening speed.

I hope you all have a blessed holiday season and are able to spend this time with your family.That is so important!!

Remember:
"We can do no great things, only small things with great love" -Ray Walder

With Love and HOPE,

Natasha, Jason, Jillian and Ian

Monday, April 10, 2006 11:32 PM CDT

Thank you to everyone who continues to look in on Jillian. It means so much to know so many of you continue to pray for her health.

This month marks three years in remission for Jillian. Our family is SO blessed to be where we are right now. I don't ever forget that.

Please remember to send out your prayers to the many other children and their families who continue the fight.

*May God grace our doctors with the knowledge they need to cure this beast.*

Peace to all the Easter,

Natasha

Saturday, January 28, 2006 9:33 PM CST

Sorry,Sorry,Sorry!!!
I know some of you are wondering why there hasn't been an update. We had massive computer problems since November and it has finally been fixed.
Since my last update was September I will start with November's news. We had much to be thankful for this Thanksgiving... happiness,life,health,and Jillian's clean scans!! The week of thanksgiving Jillian was found to be free from cancer again.
December was very busy with Christmas. We went to each side of the families homes, Jillian and Ian got mass amounts of gifts and we had fun just being together with family. Jillians break from school was simple. We stayed close to home. We played in a huge rain storm...Ian was scared but, not Jillian. Her and I danced in the rain. Sounds crazy, I know...I used to do the same thing when I was little. :)
Now we are at the end of January 2006!! Amazing how fast the days go by and the kids just grow faster and faster. It's sad and exciting all at the same time. Jillian is doing better in school, she was getting very frustrated with her work and saying she couldn't do things. Since she has come back from Vacation her teacher has told me she has been trying much harder. We agreed the break was good for her. Both kids have been sick this week. However, this year Jillian has been sick less than half as much as the year before. Maybe being around all these kid's germs is finally allowing her immune system to build up some immunity! Her school has also been every good about taking extra precautions by disinfecting her room at night and having her wash her hands often. It all seems to be helping.
Jillian will be having scans again February 13th and I will post the results as soon as I have them. Ian will turn two on Feb. 15th. I can not believe it's been two years since he was born and it's now been two years since Jillian has been off therapy. We are very blessed to be where we are in our lives.

Last requests.....
Please pray for those who are still battling or who have begun the battle again.
Please pray for our troops safe return home.
Please pray for clean scans.
Please pray for my grandmother, grandpa was called home this past week. May she find peace in little bits each day.
Please........say a prayer for your family and loved ones.

Thank you for checking in on our family,

Natasha


There are pictures in the album. I couldn't crop them. Sorry, they are so big.

Tuesday, September 6, 2005 4:25 PM CDT

Sorry for the delay in our update.
I actually just recieved Jillian's hormone test results last week. It took the doctor almost a month to get back to us. As far as the test shows Jillian's hormone levels are normal, this means we still don't know why she had low blood sugars resulting in siezures. The next step is to rule out genetic abnormalities/disorders that may exsist. The doctors think this test will be a long shot, since they feel it is highly unlikely for Jillian to have something like this show up now after all these years and treatments. But, they want to rule out any genetic issues anyway. I'm glad that the hormone levels are normal so that for now we can avoid giving Jillian growth hormones. We know at some point it is very likely she will need hormones to grow normally,but if we can hold off a while longer it would be better. I really wish we could get to the bottom of her blood sugar issues though. It's very scary not knowing why or when these episodes will occur.
Hopefully we will get to the bottom of this, if not we will deal with things like always...as they come.

Jillian started Kindergarten on August 24th. She just walked right in and was ready to start her day. She is really enjoying herself. I see Jillian everyday during lunch and being a mom I got in trouble on the second day of for trying to help her get lunch. I was sternly told..."Mommy, I want to do it myself!" So that was that, I'm not allowed to help. I have to say, Jillian looks pretty cute pulling her backpack and she's excited every morning to go to school. And, now Ian has a backpack too. He wants to be just like his big sister(GeeGee, as he calls her). It makes me smile just watching them walk to the car together in the morning with their backpacks in tow. I hope everyone is well and has a great week.

Natasha

Friday, July 29, 2005 9:23 PM CDT

Jillian had her Bone Scan and a Growth Stimulating Hormone Test today. She did really well. She did get sick to her stomach with one medication they gave her by mouth for the GSHT but, after she got it all out she ate and felt much better.
Jillian's Doctors want to see if she has enough growth hormones to regulate her blood sugar during times of stress or illness. If she isn't making enough of these hormones that could be the reason for her low blood sugar.
The results of the GSHT may take up to two weeks. I do have the Bone Scan results, CLEAN!!!

Also, on a really cool note....today while we were at Children's Hospital waiting for Jillian's Bone Scan who do I spy by the elevators.... Ty Pennington from ABC Extreme Home Makeover. I did a double take of course!! Then asked the Nuc. Med. Tech about him. Sure enough, the whole crew was there filming for an up and coming show. I met Paul and Connie who are on the show with Ty. For those of you who watch you know who they are. I talked to Paul and told him thanks for all the work they do and told him about Jillian, He got teared up... Connie was very nice..... and she knew where we're from. Amazing since we are a very small California town. The family they are doing the makeover for is from Fairfield, which is only 25 mins. from us, they family has adopted children with special needs who go to Children's. The show may be the season opener, check it out!! I'm sure it will be amazing!! You should have seen the gifts they brought in for the kids today.

Thanks for all your positive thoughts.


Natasha

Monday, July 18, 2005 11:56 AM CDT

Hi everyone!!

Sorry for the delay in updating. We have been very busy here. Mostly just everyday life stuff but, there have also been lots of doctor's visits since I updated last.

Just after my last update Jillian had another siezure from low blood sugar and she was in the hospital for three days. Once again we have no answers yet as to why this happened. Since then we have a had follow up visits, A hearing evaluation, and at least two sick visits to the doctor's. So much for a quite Summer. We still have two more doctor's visits, a bone scan and a trip to the dentist... All before I return to work on August 16th. Also, Jillian had her five year/Pre K checkup for school.

That's right....five years!! Jillian turned five on July 15th and this past Saturday she had a wonderful party. Jillian loves horses so we surprised her with ponies. She and her friends had a great time riding around the park. When I asked her that night as I tucked her in bed what her favorite part of the day was she said, "My favorite part was the.......Ponies!!" Who would have known?
I can't believe my little baby girl is five, she has come so far in such a short time.

Thanks for looking in on us. I will post again when I have Jillian's Bone Scan results. Our family as a whole is doing great. Ian is still a monster, but the cutest one I know. Between the two of them I can't sit for more than a moment. Life is to busy, but worth everything.

If you have a moment please pray for our friends who continue to fight day in and day out, and that God may bless Jillian again with a clean bone scan.

With thanks and Love,
Natasha

Wednesday, May 18, 2005 10:25 PM CDT

I'm happy to tell everyone Jillian's scans on Monday afternoon were free and clear of cancer. Scan time is always so bitter sweet, when you have friends who are hoping for the same news.

Jillian is such a big girl, in fact she won't even let me stay in the room with her anymore when they scan. She tries to boot me out before they even have her hooked up to the monitors. And in her words, when I return, "Mommy,I held still like a squirrel!" :)
For previous scans Jillian has held still like a kitty, a puppy, a hot dog, and a snake. She picks em' herself...can you tell? :)

We've gotten past a huge milestone and are free of the hospital for another three months. Unless.... Jillian decides to go in for one of her "famous" visits, where they can't seem to figure out just why she's there.

Just over two years ago we prayed God would get us through to this point.We are so lucky Jillian has been in remission this long.

I hope I will be able to sit here in another two years and say the same thing.

Have a good week guys!

Love,
Natasha

Tuesday, May 3, 2005 6:03 PM CDT

I wanted to let everyone know Lauren is doing well, and her family has gotten the final word that the cancer has not spread beyond the spot in her leg. This is huge and wonderful news, because her Doctors believe they will be able to treat the area and Lauren will be back in remission again. Thank you for your thoughts.

Jillian has been sick the past few days(not a rare occurence). Yesterday was abit uneasy for us for part of the day. Jillian had some adverse reactions to a medication we had been using for allergies. We had to take her to the Doctor and found out in the process she has strep throat and a UTI, needless to say she is fine and we stopped the medication. The worry some aches and pains are gone, but it never ceases to amaze me how Jillian always seems to throw us for a loop and has to be in that 1% group that will not respond well to a medication.

Both Jillian and Ian took a sick day at Grandma's house, as did Grandma(Thanks Mom) so we can try to nip these illnesses in the butt, as we have been dealing with awful coughs and virus' since October. I really hope that has summer creeps up on us we will have a break from this madness.

Thank you for your continued thoughts and prayers,
Keep them coming as May 16th is fast approaching.

Have a peaceful night and a wonderful tommorrow.

Friday, April 22, 2005 9:43 PM CDT

I would like to thank everyone for their encouraging guest book enteries. It means so much to read them, even those of you we've never met.

I think everyone recalls in my last entry when I mentioned just how lucky we are Jillian is in remission. Well, tonight I was reminded once again of this fact. A very special little girl named Lauren, who also had stage IV Neuroblastoma, has relapsed. Lauren and Jillian were in treatment together in New York. I became close with her family and even watched their newborn baby Abby for them while Lauren was in the hospital. I can't even discribe the way this makes me feel inside and I can't even begin to imagine what her parents, Patty and Steve, are feeling.

The road ahead will be one of uncertain times for them, so please send prayers and positive thoughts their way. I also thought I should mention Patty is expecting her third baby and it was at almost the same time during her second pregnancy with Abby when Lauren was diagnosed with Neuroblastoma. Pray for them, and for Lauren...may she beat the odds all over again.

All of this is very unexpected and proves once again how much each and everyone of us should not take life for granted. Life is a gift. Don't forget to kiss your kids goodnight, it seems like such a small thing and sometimes where just so tired, or we've had a long day. But, please don't forget it only takes one second.

Not all parents get that Luxury.

Thank you for checking in on us. I will update again soon. Please pray that Lauren's cancer has not spread past the tumor they have found in her leg. Also, if you can please pray that Jillian's CT scan on May 16th is still showing No Evidence of Disease. I have to tell you I'm very nervous now after hearing about Lauren's relapse. This news stirs up many emotions, all you cancer mom's know what I mean.

Take care and Have a wonderful weekend,

Natasha

Monday, April 18, 2005 9:23 PM CDT

Hi everyone !

It's Natasha, Jillian's mommy. I figured it's about time I take over the journal updates for Jillian, as she is always such a busy girl. I have wanted to update Jillian's page many times myself, but until now I don't think I've been ready. I guess it has been a way, the only way, to keep myself alittle seperated from everything our family as endured in the past three and a half years.

I meant to do this update last Monday, as it was a very important date for us. April 11, 2003 was the day Jillian was delcared NED or in remission. That makes last Monday her two year anniversary!! We are so darn blessed it is unbelievable. I feel overwelmed,happy,and sad all at the same time.

It is overwelming to know how many parents dream of hearing the words remission and it is hard not to feel a bit guilty because you have. Why us? Every one of these kids deserves to enjoy the simple things in life, like watching baby horses run or chewing gum with their Auntie.

At the same time you can't help but be happy that at least for now your child is well and can enjoy being exactly what they are supposed to be.....a little girl who loves to sing, and wants to live on a farm.

It is sad to know how many families have had this simple pleasure in life taken way. I say simple not to make raising children seem simple, we know that is far from true, but because compared to life two years ago, this is simple and a miracle and a blessing and a gift all rolled into one. Everything happens for a reason, God has a plan, sometimes it's just so hard to see. We are very lucky.

Thank you everyone for your support, please pass your thoughts and prayers along to all the other family's who need them too. You may not know them by name or by face, but they could use the positive thoughts. I encourage you to click the Warriors link below to meet some wonderful friends of ours. Some we have met and others we know only because we've walked a bit in their shoes.

Life is good!! Jillian is great!! Couldn't ask for more!!

Tuesday, February 22, 2005 5:54 PM CST

Dear Family and Friends;

Well, I thought it was time to stir up some action.
Last Wednesday I had a spell, and fainted on my mommy very early in the morning. Paramedics came and rushed me off to the Hospital.
I was not responsive, and they considered “Life Flight”
I had a couple of Petite Maul Seizures, and I believe that mommy was expecting the worse news ever.
My grammy and papa had my baby brother with them, when they rushed to see me. I was completely out of it.
It was then, they discovered my Blood Sugar level was only 32 and normal for a kid like me is 80-100. They gave me this bag of stuff, and we waited.
(While waiting the hospital was trying to decide how to life flight me to Oakland Children’s Hospital, because the weather was very stormy)
Grammy took Ian to the waiting area and then came back to check on me.
Can you guess what she saw?
ME, little ole Jillian, sweetie pie, sitting up coloring and drinking juice!
I think grammy almost fainted. I was smiling at her and mommy.
Papa then got the shock as well, and Pineapple (that’s my brother) was trying to get my juice.
So the plan changed from a Helicopter ride to ride in the Ambulance to Oakland.
While in the Oakland ICU, I was tested for many things, including Spinal Meningitis.
We are so happy to report that everything came back normal.
While this was extremely serious, some of the best news is, there is no indication that this had anything to do with cancer.
So, now I am home and get to have my finger poked every 4 hours to check my blood sugar.
This certainly a lot better then having to stay in the hospital!
I am doing well, and so happy to tell you so.

Grammy said something about a few more gray hairs.
She is silly like that.

God bless you all.
Love,
Jillian

Monday, November 22, 2004 1:10 PM CST

Happy Thanksgiving!

We have a lot to be thankful for.
I am so happy to celebrate and share with you the great news, that my (11/19) scans and blood work show that I am still showing no evidence of disease.
I continue to grow and become a very independent 4 year old.
I am going to school 4 days per week now, and am getting ready to start Kindergarten next fall.
I do not really like my homework, but I am trying my hardest to do the best I can. I drive my mommy and daddy crazy so I know that I must be doing very well!
We had a Thanksgiving Feastat school, and I was a Pilgram girl.
My hat kept falling off during the songs, which was very annoying for me. So I held it on during the funny Turkey song.
My brother Ian is almost walking, and he is the best ever.
(even though he does pull my hair)
We went to Disneyland this month, and my Auntie Megan celebrated her 22nd birthday while there.
I got to sit with Airelle and walk with Cinderella.
Airelle told me that her tail was still wet, because she just got back from playing "Hide and go fish" with Nemo.
Megan and daddy talked Grammy and Papa into going on "The Hollywood Hotel of Terror", after they got off Grammy said something about finding the bathroom real quick. I think it kind of scared her, or something.

We plan to give our thanks this year at my Grammy and Papa's house.
Celebrating with friends and family.

Have a Happy Holiday!
Remember to give hugs to all those you love.
I send my love to you!
Love,
Jillian

Thursday, July 29, 2004 8:22 PM CDT

Dear Family and Friends;

Here I am finally!
Long time, but all is well here in Rio.
We moved in June and July 15th I turned 4 years old.
My mom and daddy had a swim party for me.
Lot's of fun and a big mess for mom.

I had scans July 26th.
We are so happy to report that all is clear.
I got taller and gained some weight.
I can't tell you how relieved we all are.

I would have uploaded more pictures earlier, but we had a little incident.
Auntie Meggie took me to the River to take pictures of me with the Digital Camera. Well, I was jumpimg some waves and lost my balance. Auntie Meg, grabbed me a dropped the camera in the water. Last thing I heard was Grammy saying we could use it for a paper weight now. Wonder what that means?
So we have a new one, but do not know how to use it very well.
One more thing I have on my list.

Just wanted to let you all know we are fine.
My brother is growing like a weed. He weighs 18 pounds and is almost 6 months. Grammy calls him Sumu Baby.
Of course he is adorable!
I will get back to you all soon.
Look at the new pictures.

Love,
Jillian

Tuesday, May 18, 2004 4:52 PM CDT

Dear Family and Friends;

It has taken me way too long to let you know what is going on with me and my family.

My baby brother, Ian is 3 months old now. He weighs 14 lbs.
He is smiling and sometimes he lets out a laugh.
He is very cute, and I love him a lot.

My preschool is almost ready to take the summer break.
I have had a great time learning many fun new things this year.
I like school, but I really love ART!
(it is my 2nd best favorite thing. SHOES are #1)

I had scans in March, and everything continues to look wonderful for me. I will be getting tested again soon, and will try to be better at up dating.
I hope that you all felt, that no news was good news.

We are moving in June. We bought Grammy and Papa's house, and they are moving into a new house. So, I am looking forward to learning how to swim this year in our pool.
And setting up a new home for my Rabbit.
Not long after Easter I got a little Bunny Rabbit.
He is very cute, and he reminded me of Rabbit in Winnie the Pooh. So I named him "Rabbit". One thing for sure it is easy to remember.

I am going to say good bye for now.
Hope this finds you all well and happy.
Life is good, and we are blessed everyday.
We have the love of a great family and many friends.
Love,
Jillian

Tuesday, February 17, 2004 11:06 PM CST

Hi everyone;
The day has finally come. My baby brother is here!
He is a very little guy,I love him and could not wait to take him home.
Mommy and Daddy went to John Muir Hospital very early Sunday morning February 15th. He was born just after 7:00 am.
He weighed 7lbs 3oz, and was 20 inches long.
We named him; Ian Scott Maghoney
He is my little brother. Our sweet baby Ian.
Thank you God for giving us a healthy baby.

Please keep the Neruoblastoma Warriors in your heart and prayers.

More later....we have got to catch up some sleep.
Love,
Jillian
"The big sister"

Tuesday, January 20, 2004 4:16 PM CST

Hi everyone;

Everything is great!
Just wanted to let you know that.
We are just waiting for my baby brother to get here.
My mommy is already dialated to a 1, so the Doctor told her to take it easy.
Our little boy will be here soon!
I will keep you posted.

Remember to pray for all the other Neuroblastoma warriors.
So many are fighting so hard. Click on the link.
http://www.warriors.beebo.info

I think back about my little life and know how blessed I am to be where I am today.
I have had a lot of love and encouragement from all of you that have supported me and my family for the past 2 1/2 years.
I always like to think that through something bad, something good will take its place.
Thank you for loving me and praying for me.
Love,
Jillian
P.S I got some new Red Shoes! I just love those shoes.

Monday, December 29, 2003 6:27 PM CST

Dear Family and Friends;

Well, third time is a charm.
I have tried to update my Web Site, and just when
I got all of my information typed and I went to view for any corrections, it all went away to the “page cannot be displayed mode".

First and fore most:
Happy Holidays to all of our special family and Friends!

I want to update you on my most recent scans.
EVERYTHING LOOKS GREAT! I AM FREE AND CLEAR.
Thank you for praying and thinking about my family and I during this time.
I get scans every 3 months, so it does get a bit “edgy” around that time.
The other good news is that I gained a pound, and grew a little taller.
I continue to look and feel great. (If I do say so my self)!

Mommy is going to the Doctor every 2 weeks now. It will not be long before my little brother joins us.
Mommy has had to check her blood sugars after every meal. She has been diagnosed with Gestational Diabetes, so she has to be very careful.
So needless to say she has not gained any weight, and looks terrific.
My baby brother is doing just fine too!
He should be here sometime within the first two weeks of February.

We had a wonderful Christmas. I can’t help but think back on where we were last year this same time. I was just out of the hospital in NYC from surgery. So much has happened that is so awesome since last year.
We are so thankful, thankful for health, love and family.

Now I am off to “run faster and jump higher” in my new SHOES!
Happy New Year!
Love,
Jillian

Wednesday, December 3, 2003 4:31 PM CST

Dear Family and Friends;

Here I am!
Sorry it took so long to write to you about my recent adventures.
As you can see by the photo up above I have been a traveler.
My Papa told me that when I was in Remission we were going to go to Disneyland, and he was not kidding.
We had so much fun. It was decorated like Christmas and when the Fireworks Show was finished it looked like it was snowing. ( some special "Disney" effects )
While we were in Anahiem, it felt like it could snow. It was very cold for November in So. California.
I loved the Tea Cups, and Alice and Wonderland.
We went on Pirates of the Carribean 2 times.
The first time it was kind of scary, but the second time around I knew those guys were not real.

I was selected "Student of the Week" in Pre-school in October.
My teacher asked me what I wanted to be when I grew up.
I told her, "I want to grow up"

I am still taking Acutane and hope to be off of that very soon. It drys the heck out of me.
I go for Scans again on Monday 12/8/2003
This is always such a nerve racking time for all of us.
Please pray that they are still clear and free of Cancer.

I will try to be better about updating.
I have a lot to do in the next few weeks.....Santa, shopping
and being a Three year Old.

Love to you all,
Jillian

Tuesday, September 23, 2003 4:01 PM CDT

Dear Family and Friends;

Today is the 1st day of Fall, and it is still like Summer here in California.

I came home from New York September 6th.
(It was a great day for me and mommmy).
While in NYC I did make it through 9 days of the F38 Antibody treatments. (they do not work on Labor day)
The first week was very painful for me.
The second week, I did not feel the pain at all.
Now, they tell us that Pain means it is working.
So we are not sure if I built up an immunity to the treatment.
We will find out that information soon. If I did build up a immunity, then I will not be going back until that is gone.
The best news of all is that ALL of my tests came back negative for Cancer.
So I am STILL Cancer FREE.

I did manage to do some very exciting things while in the BIG Apple. My grammy, mommy and I all went to the Central Park Zoo. I got my face painted like a Butterfly.
And we watched the Sea Lions get their Lunch.
Yikes, they can sure splash and swim fast!

We went shopping at the BIG Macy's. (yes, I got shoes!)
We walked a lot and got to eat at some very interesting places.

Ronald Mcdonald House always had something going on as well.
BBQ's for all of us, and we even went to "Little House of Plaster" to make ceramics.

When I got home my mommy and daddy enrolled me in Pre-school! I am so excited to go to school.
I love to paint.

We found out that our new baby is due March 1.
Mommy gets a special scan Oct 3, so maybe it will be the baby sister I think it is!

The leaves will soon be falling and out will come the sweaters.
Best wishes and love to you all,
Jillian

Saturday, August 30, 2003 4:45 PM CDT

Dear Family and Friends;

All is well here in the Big Apple!
Just to let you know all of my tests have come back clear.
I am still Cancer free!
I started my 3F8 Antibodies last Monday, and so far everything has gone very well. I have now made it through 1 week of a 2 week treatment.

I went to Central Park and went on a Carriage Ride. (those horses kind of stink) but it was so much fun.

Today we went to the Zoo and walked home in a down poor of rain. We all got wet, but it was a great relief from the humidity.

Please continue to pray for my recovery and all the other kids here at Sloan.
This Cancer knows no boundaries, no child is immune from Cancer. We see this as we walk the halls of Ronald McDonald and Memorial Sloan.

New York is great, but I can't wait to come home.

God bless you all!

Love,
Jillian

P.S. I got 2 pair of the greatest pairs of shoes while I have been here. I love shoes!!

Monday, August 11, 2003 7:23 PM CDT

Dear Family and Friends;

I have been on so many adventures since I last wrote I am not sure where to begin.
I turned 3 July 15th. Mommy and Daddy rented a Simba jump house for me. You know one of those things where you can literally bounce off the walls. I had lots of family and friends there to celebrate.
I had so much fun running and jumping and singing, you name it.
I love being 3!

July 14th I got my Broviac (Central Line) removed.
That was so cool to wake up see that line gone. It was a part of me for almost 2 years.
I know it was a huge relief for my mom and dad to not worry about infections or it being pulled or tugged at anymore.
I just have to be very brave now, because they will be giving me injections in my arms or other places when they need blood or to give me treatments.
We are just so blessed to know that I am in REMISSION, and pray that we never have to say the "C' word again.
The testing still goes on to be sure I stay in remission. They tell me for the rest of my life.

My Grammy, Auntie Meggie and Mommy all left for Washington State July 30.
My Papa road his Motorcycle and left the day before us. But, we all met up in Florence, Oregon to see my other Grandpa. Then we went on to Vancouver, Washington. My Great-Gram had a ANOTHER Birthday party for me.
This time we had a Winnie the Pooh jump house.
I got to meet all of my Great Aunts, Uncles and cousins. It was so much fun. I felt like a Princess!
I even got a Princess outfit! After I ate the candy and (got blues lips from it) I got grumpy.
Well, mommy did not think I was a Princess anymore!
We came home and I got back to business of running and jumping and singing again.

I am sure I did not tell you all yet. Something really great is going to happen in February 2004.
Mommy is going to have a baby! Yes, I get a new baby.
I think I will like that.

We leave for New York and Ronald's House again 8/17.
I have been okayed to start Antibody Treatment again.
Remember this is a good thing. It is like a Vaccine to keep the Cancer away.
We will be gone 3 weeks...at least that is what they tell us. I hope they are right.
I need to get back home for some running, jumping and singing.
And to see my daddy!

Thanks to all of you that kept looking at my Web page for updates.
I know I was slow at getting the information to this site.
The truth be known, it felt great not to have to write anything for awhile.
My life has more freedom, and I feel like such a strong little girl now.
Thanks for praying for me and being my friends.
I love you all!

Love,
Jillian

P.S.
PLEASE BE SURE TO SEE THE NEW PICTURES1
I AM PRETTY CUTE!

Friday, June 6, 2003 10:05 AM CDT

Dear Family and Friends;

So much has happened since April.
We got home from New York just in the nick of time.
Mommy and daddy had so much left to do for their big day, but it all worked out. YEAH!
May 10th, mommy and daddy got married.
I was the Flower girl. The problem for me was I did not feel that great and I could not believe all the people.
I was overwhelmed!
However, I must say I looked beautiful in my Blue Dress with my Blue sparkly shoes and my flower crown.
When I walked idown the aisle with my Auntie Meggie holding me, everyone was looking at me and crying.
I realized right then how much I am loved. Loved by so many people and some I have never met before.
It was a beautiful day, even if I did have to go home early.
Gramma Rose Mary left the party to stay with me. She is so sweet that way.

I wanted you to all know that the last scans for May came out great.
I get another Bone Marrow Biopsy on June 18th, and if that looks good they may take out my line by the end of the month. That would be so cool, because then I can jump all the way into the pool at Grammies!
Also there are not any trips planned for New York at this time to continue the AntiBody treatments.
I will keep you posted.

You should see me now! I have put on some weight, (although I still have to keep pulling up my pants over my tiny behind), but I look and feel great. I even have some hair!

Keep the faith!
Love to you all,
Jillian

P.S as soon as we can we will put some pictures of the wedding on my page.

Monday, April 28, 2003 5:49 PM CDT

Dear Family and Friends;

We are nearing our last days here in the Big Apple, and counting every minute until we go home.
We leave for Oakland Airport, May 2nd.
By then I will have been in New York for 6 weeks!

I guess I should tell you that after I announced that I was in Remission, I got a Blood infection.
I ended up at Cornell in ICU, then back to Memorial Sloan Kettering.
I was in the hospital over 10 days, but I am back in the swing of things.
My daddy came to visit while I was in the hospital, and they did let us "free" for a while to go see "Dora the Explorer" at the Radio City Music Hall.
After that was over I had to head back to the hospital to finish my antibiotics for the infection.

So that was a major set back for our time frame that we had perfectly calculated out for the Wedding.
Because you know, my mommy and daddy are getting married May 10th, and I get to be the Princess Flower Girl!
So grammy had to FedEx mommies Wedding Dress here to be altered.
It is so pretty now that it fits her just right. She looks like a Princess too!
After the wedding I will be sure to update my site so you can see how beautiful we all look.

My Antibody Treatment has gone well, but I sure do not like it much.
I will let you know if I will continue the treatment once we know for sure my Immune system is NOT fighting the
Antibodies off.

Best wishes to you all.
Happy spring!
God Bless,
Jillian

Friday, April 11, 2003 9:58 AM CDT

Dear Family and Friends;

Everything here in New York is going great.
We just wish Spring would get here. It is still cold and we have seen more snow and rain.

I have completed all of my scans and tests. It seems like it takes forever to get things done, but THE results were worth waiting for.
I AM OFFICIALLY IN REMISSION!!!
I am so excited that I have been jumping on the bed here at Ronald's house. (ssshhh, don't tell him)

I have so much more to tell you but I gotta run for now.
We will be home April 26th.

Our prayers, hopes and so many dreams have been answered.
The support of all of you makes my family so thankful and happy.
Thank you so much.
We love you,
Jillian

Friday, March 28, 2003 5:48 PM CST

Dear Family and Friends;

We flew out yesterday from Oakland and made it back to NYC and Ronald McDonald's house.
Today I had my Bone Marrow biopsy and I am already up and running around.
I have more scans that need to be done, but when everything is completed and they decide I am ready they will start the Antibody injection April 7th.
I will have this injection for 5 days then take the weekend off and then have another round for 5 days, then fly home April 19th. Just in time for the big Easter Egg Hunt at Grammy's on Sunday.
I can't wait to get home and I just got here.

Mommy brought the Potty Book and my Potty seat, and guess what? Today I actually used it and I feel like such a big girl now. I even called grammy and Auntie Meggie and told them. They are so proud of me!

The day before we left for New York, 2 very special girls came to see me.
Remember when I told you about the story the Galt Herald News paper wrote about me a couple of journals ago?
Well, a sweet girl named Lexi decided to make a challenge with her 6th grade class. She challenged them to see how many pennies they could collect. She took the picture of me that was in the paper and glued it to an envelope. She then went on her great Penny adventure and all for me, someone she had never met before. She told her class that WHOEVER collected the most pennies would get to come with her to meet me.
Well, Jamie won! It was very exciting to meet them both.
I even updated my website with their pictures!
Check it out.
Thanks so much Lexi!
This is for you:
"If you live to be a hundred, I want to live to be a hundred minus one day, so I never have to live without you"
Winne the Pooh

Love to you all!
I'll be home before I know it.
Love,
Jillian

Monday, March 24, 2003 7:23 PM CST

Dear Family and Friends;

We are getting ready to go to New York again.
I will start the AntiBody program and we will be gone for almost 3 weeks.
Thanks for all of your prayers. I am feeling great and now weigh 22 pounds as I am eating just about everything!

Please be sure and check out the new link on my Web site.
Some Angel's stopped by and made a "Quilt of Love" for me.
If you want to add a square just follow the directions.

Thanks again for all your thoughts and prayers!
I will be back before you know it and I will update you on my progress while I am gone.

Love,
Jillian

Friday, March 7, 2003 5:45 PM CST

Dear Friends and Family;

I am home again! I made it through my 11th Chemo treatment and am feeling pretty good.
I was at Children's Hospital for 5 days and came home last Monday. (March 3rd)
Although I did go get Platelets today, I am sure I will fly through this like always.

Yesterday we went to grammy's and I got to swing on the big big swing that Papa made for me and Mackenzy. (my cousin)
It was so fun, cause Papa swings with me. Sometimes I think he likes to swing more then me!

I want to pass along a story that a very nice lady named Diana Gieger wrote for The Galt Herald.
It is a story about mommy, daddy and me.
Just wait until you see the picture of us in front of Ronald's van!
We send our love and thanks to you Diana!
(just click here to read that story)
http://www.thegaltherald.com

There have been so many people that have helped us through the past 2 years. With out your love and understanding times would have been so much harder for us.
We know through actions of so many that heaven has to be missing Angels.

Just like our good friend who helped us understand Cancer better when I was first diagonsed.
Eric was a Cancer survivor of Hodgekins Disease. He told us to take one day at a time and remember that life is a gift.
Eric lived in remission for over 12 years, but for the last 2 years he had to deal with a heart problem. Through it all Eric strived to be the best at what ever he did.
Last night Eric got his Wings.
Eric was only 51, we are really going to miss him.

Be the best you can and tell the ones you love that you love them. You never know what the future can bring.

Love to you all,
Jillian

Wednesday, February 19, 2003 10:08 AM CST

Dear Readers;

I felt compelled to write this addendum to yesterdays journal.
While the results of all the testing are negative for cancer, and Jillian's surgery was a huge success.
Jillian has not be officially declared in Remmission.

So please continue to keep her in your prayers.
She has over come a huge Mountain. But, Her treatment continues. Around March 1st she will endure another Chemo session at Oakland's Childrens' Hospital. More testing and Biopsies, and she will return to New York for Antibody Studies. She has been very fortunate to be excepted to this Clinical Trail.

We just wanted you to understand that this fight is still not over.
Thank you for your support.
I know Jillian will want to keep you all updated on her adventures.
So stay tuned!
Sincerely,
The Editor

Tuesday, February 18, 2003 6:36 PM CST

Dear Family and Friends;

Hello from the Big Apple!
It is a blizzard here, the Airports have been closed and the snow is everywhere.
My daddy is going to go home today. I want to go home too.

My surgery went well. Dr. Laquaila told my mommy and daddy that he got everything this time. He is very pleased and told them this. He took some biopsies and that is part of the reason I have not updated my Web site, because we were waiting to hear the results.
Today we found out that my Bone Marrow is clear of Cancer, as well as my Liver. I am not even sure what all the biopsies were that he took, but they ALL came back negative. FREE OF CANCER.
We are jumping up and down right now. (well I am not, as I am just getting up and around) but my family is very happy and know that we have been blessed.
Once again we can thank all of our friend and family for your support and prayers.

I was released from ICU today. I would have been yesterday, but the weather was so bad they did not want to transport me the 2 blocks to Memorial Sloan Kettering from Cornell.
I talked to my grammy for a minute and asked her if my puppy got a bath, because I did!
They tell my mommy that Friday (2/21) would not be unreasonable to be released from here.
We will then go back to Ronald McDonald's House and wait a few days before I can fly home.

While we were here this time, we found out that my surgeon is not just the best in the country, but the best in the world. We thank God that he brought him to me.
We believe that we could now be on the other side of this Mountain, and our lives could begin again.
Begin without Cancer.
We have so much to catch up on.

I will let you know how I am in a few days. But, you must know that everyday I become stronger because that is what I want to do. I have so much to learn and so much to share.
My grammy says I changed her life forever. She told me that she will never be able to look at things the way she use to. She believes that I am so brave and so strong, and she tells all her friends that "Children with Cancer are faces of courage". I am not sure what she means, but I think you all might.

Bye for now. I will be back home before you know it.
I heard the Daffodils and Tulips are blooming in California.
Good, because all that blooms here right now is snow!

God bless you all!
Love,
Jillian

Wednesday, February 5, 2003 1:46 PM CST

Dear Family and Friends;
Well here we are, back in the Big Apple. (Feb 4, 2003)
Our flight on American was a good one, but I wish I could have had Waffels!

When we arrived it was in mid the 40's, but it quickly went down to 39 degrees, and snow is expected.
I start my testing 2/5 and that will involve the regular drill. CT Scans, Bone Marrow Biopsy, ect.
Once this is complete, it looks like my surgery will be February 11th at 11:00.
This surgery will be to remove the last part of the tumor that is still cancerous. Once I have recovered from this surgery I will return to Oakland Children's Hospital for another round of Chemo.

I will then again go back to NYC-Sloan Kettering to receive my first round of Antibodies. The Antibodies are a clinical trial that is offered at Sloan Kettering. I will be checked after this is over to see if my body has built a resistance to the Antibody study. If it has, I will only have one round. If my body excepts the Antibodies I will return to Sloan Kettering for more therapy.
One other thing has occured with me. My left Kidney is no longer working and is shrinking.
There was questions about it functioning correctly when I had my last surgery in November. It has now been confirmed that it is not functioning at all.
The good thing is our bodies can live with one Kidney and can live very well indeed.

We are excited here in Rio, my mommy and daddy are busy planning their wedding.
The big day is May 10th, and I have my Princess dress all picked out!

Keep me in your prayers.
February 11th is going to be a hard day to get through for my family.
They are worried about me. BUT you know me. I am like a Tigger, I always spring back!
Love,
Jillian
P.S. Daddy and Auntie Meggie will be here Friday (Feb 7th). Hurry up and get here!

Monday, January 20, 2003 at 03:27 PM (CST)

Dear Family and Friends;
Hello everyone!
Things are going swell here in Rio.
I lost my hair again, but I am feeling great.
We are waiting to see what my blood is doing this week. If it is completely recovered I will be flying off the New York again for what we hope is my final surgery.

I updated the site today with new pictures of my puppy.
She is a bery cute Black Lab. She is such a baby! So sometimes I get jealous because mommy has to take such good care of her. We adopted her from the Animal Shelter and she is only about 6 weeks old.

Please be sure to check out my new pictures!
I will be talking to you all soon.
Keep the faith!
Love,
Jillian

Saturday, December 28, 2002 at 03:00 PM (CST)

Dear Family and Friends;

I hope this finds you all well and happy.
My family hopes that your Christmas was a great one, and that the New Year brings us all health and happiness.

I could not believe my eyes when I woke up Christmas morning. I had a motorized Barbie Jeep under the tree!
Wow, that Santa guy ate almost all the cookies and left me a jeep. Can you believe it!

I got home from Children's Hospital just in time for Christmas. I finished my 5 days Chemo Monday December 23rd, and so far I am feeling fine.
I look great too if I might add.
So be sure and look at the new pictures!

This past year has been one of trials and triumphs.
My family is praying that we can put this cancer into remission soon. One more surgery and one more chemo.
Just keep praying and hopeing for the best!

God Bless you all!
Love,
Jillian

Thursday, December 19, 2002 at 06:44 PM (CST)

Dear Family and Friends;
I bet you were wondering what happened to me. Well, I am doing much better.
I gained 1/2 pound! And I am eating again like I can not get enough.
We are now back at Oakland Children's Hospital (as of 12/19), today I start my 10th Chemo.
This is a maintenance Chemo to make sure that none of the Neuroblastoma cells escaped from the tumor into my body to make other bad cells (cancer).
I will be here 5 days, then back home in time for Christmas.
I just got back about two inches of my hair, and may lose it again. Darn!
After this treatment we will see where I am, and will get ready for another trip to NYC to get another surgery.
Then another Chemo treatment.
My doctors in Oakland are very impressed with my progress. They said that most Neuroblastoma cases do not do as well as I have. That I am strong and healthy.
Please keep that thought!

I am off now to the playroom, or what ever else I can find to do. There has got to be something that I can get into!
Happy Holidays!
I will write soon.
Love,
Jillian

Tuesday, December 10, 2002 at 07:04 PM (CST)

Dear Family and Friends;
It has been a slower recovery for me this time. I have really not been my old self.
Maybe it is being so far away from home, and most likely it is being away from my family.
I miss my daddy so much!
But, the really good news is I have been released to go home tomorrow. (12/11/02)
I have endured the cold and this place long enough they say.
We saw 6 inches of snow and my mommy put me in my Snow Suit. I looked like the little boy from "A Christmas Story", my arms straight out to my sides, but I was warm as my mommy and me watched the snow come down.

So much has been said about what they will do now. First they thought another Stem Cell transplant, now they say no to that. Since I had the problem with my Liver (VOD) during the last Stem Cell, the Doctors feel this is a risk. The thought is now, more Chemo.....another kind.
I may start this as soon as December 16th, but we are not sure. I know that mommy does not want to wait.
She is worried about the cancer and how fast it moves. She says, that since the surgery and that there were live Neuroblastoma cells in the tumor, she does not want to take any chances that one of those bads cells escape and start growing somewhere else.
Once the Chemo is over I will go back to NYC and get the other Tumor removed around January 16th, 2003
I know, it seems like a lot. But, we have to do this. I want to be free of this forever.
My mommy and daddy need to have peace of mind.

I know this is not what any of us wanted to hear, or have to deal with. But, it is the way it is, and the fight goes on.
So many good things about my progress have happened, so do not focus on this as a bad thing, just focus on it as the next step to recovery, and most of all remission.

I need to go to bed now. We get up at 4:00 AM. We will fly from JFK to Oakland to be home. I know I will feel better when I get home. Everyone that loves me so much is waiting to FEED me to fatten me up and give me lots of hugs and kisses.
There is really no place like home.
I love you all.
Love,
Jillian

Monday, December 02, 2002 at 04:34 PM (CST)

Dear Family and Friends;
I know that you have all been waiting to hear about my progress.
Truthfully this surgery knocked the crap out of me for a few days, but today I did manage to walk to the Playroom. I am still not very hungry, so I will not be released from the hospital until I eat more.

I had surgery 11/26. We had to be at Memorial Sloan Kettering at 6:15 AM and about 8:00 they started and finished about 4:00 PM. I was rushed by ambulance across the street to Cornell to Pediatric ICU. I was released from ICU yesterday.
Dr Laquaglia, was able to remove all of the Tumor on my left side. I had Interoperative Radiation at the site as well.
My Kidney does not look to happy, but we have to wait and see if it will get better.
While we were getting all the scans for me that were needed for the surgery, my Doctor found another spot on the right side of my Esophogus.
I may have to have another surgery to have that removed, and I WILL have to have more treatment.
We are not sure what that is right now, and we do not know if that means staying in NYC for the treatment.
I know that mommy and daddy will do whatever they think is best for my recovery.

Daddy went home Friday (11/29) to get back to work. So it is mommy and me for awhile.
Grammy and Papa made it to see me and was there for me while I had surgery.
We all went to Ground 0, then to my favorite eating place. McDonalds!!
Ronald McDonald is the coolest guy. He helps all kinds of people, and without the Ronald McDonald house I am not sure where we could afford to stay. New York City is the coolest place, but it is very expensive.

Please keep my family in your prayers.
Before you know it I will be up to something!
Love,
Jillian

Note from editor:
Jillian, of course was strong as ever. She will not be down long.
We were not happy to hear about another surgery or more treatment, but this is a step in the direction we need to go for remission.
If anyone can do this Jillian can.
Sincerely,
The Editor

Wednesday, November 20, 2002 at 11:25 PM (CST)

Dear Friends and Family;
I know that you have all been waiting patiently for my results and to know when my surgery will take place.
It was hard to wait the extra week, but the wait was worth it. My MIBG scan came back looking even BETTER then the one from UCSF. The only area that lights up is the tumor.
That is great news. My bone Marrow Biopsy on first look is negative. So my Doctor told my mommy to schedule the surgery.
November 26th, they will remove the rest of the tumor (please pray they can get it all), and I will receive interoperative Radiation at the sites as well.
We all wondered how long the surgery would take, and Dr. Laquaglia said "it will be over when I am done".
So there you have it!

My Grandma and Grandpa Maghoney came with Auntie Amber to see me last week. We had fun, and as always it is so nice to see them and know how much they love me.
I got to see the Impire State Bldg, and boy was it high above the world! I did manage to sleep through some of that, but they told me it was great.
Grammy and Papa Howard will be here Saturday, so maybe we will see Ms. Liberty! I have heard a lot about her.

Your prayers and thoughts are felt all the way over here in Upper East Manhattan! We thank you! We love you and hope to be home soon.
This surgery could mean remission for me.

Love,
Jillian

Editor: "Children with cancer are faces of Courage"

Tuesday, November 12, 2002 at 10:47 PM (CST)

Hello Family and Friends;
Well, here I am in New York, New York. Upper East Manhattan to be exact.
We are staying at The Ronald McDonald House that is two blocks from Memorial Sloan Kettering Hospital.
This place is so cool! ( Keep eating those Happy Meals!) They take such good care of families like mine that are going through what we are. We have a computer room, and media room, and our own room with a Kitchenette.
Everything we need, a home away from home.
Our first consult was on Monday at 9:00 AM....well, we finally saw our Doctor around 4:00 PM.
To keep us from going crazy (mostly me) they have Clowns that come around and do tricks.
We get to eat and drink all we want. That helped today, because I had to do a 6 hour urine test.
The coolest thing happened. Michael J. Fox came through ( I am not sure who he is but everyone was so excited) and talked to each and every family. We got our picture with him , and he talked to my mommy and daddy.
They have things like this going on all the time here. I really like it, but can't wait until I come home.

The Doctor's decided that they needed more testing before they can do surgery. So surgery is not going to happen
this Thursday as we thought it would. They need another MIBG ( a special Neuroblastoma scan), my urine tests, and a 4 point Bone Marrow test. That includes my back hip bones and front hip bones.
The surgery is risky and extensive. So they want to be sure that everything is ready before they say "lets go".

So that is the latest on me. I am feeling great, but I do have a bit of Jet Lag.
I will let you know what is going on as soon as we know.
Goodbye from Ronald McDonald House..
We have tomorrow free, so I think we might get to see some more of this place they call,
"The Big Apple"
Love,
Jillian

Tuesday, November 05, 2002 at 07:23 PM (CST)

Dear Family and Friends;
I should have been here earlier writing this page, but so much has been going on.
The editor had it all wrong last week about my leaving today. (silly gamma)
I am really leaving this Sunday November 10th. We are leaving before the crack of dawn for the Oakland Airport.
Our flight leaves at 6:00am something,.
So many things have had to take place before this date finally was etched in stone, and the editor is sorry for any wrong information she may have given you.
BUT THIS IS THE DATE: November 10.2002
My surgery is tenatively scheduled for 11/14. (Auntie Meggies Birthday-sorry about that). We will know for sure after mommy and daddy consult with the doctors. We will be sure to let you all know.
We do hope to see Ground 0 and Lady Liberty before the surgery, after that we will not be going anywhere. We did get some warm clothes for the trip. NYC is not like California!

I will be sure that mommy and daddy take some very cute pictures of me for the web page.
Please know that we are a little scared. A big plane trip and a consultation about me and this surgery is a lot to think about. We know one thing...we want to WIN this fight with Cancer. AND we have every intention of WINNING!
So pray for us. We thank you and love you all.
Love,
Jillian

Monday, October 28, 2002 at 02:20 PM (CST)

Dear Family and Friends;
Well, I leave November 4th for NYC,
We will fly into JFK Airport, and then head over to Manhatten. I will be at Memorial Sloan Kettering for the surgery.
My mommmy and daddy will consult with Dr. Laquaglia, and after that is over I will have to update again. We think that the surgery will be soon after that.
My mommy and daddy will probably take turns staying with me, and the other will stay at the Ronald McDonald house that is 2 blocks away from the hospital.

I will update more later on the trip.

Take a look at my NEW picture. The Daily Republic of Fairfield, CA. Did a story on me for Sunday's paper.
It was a very nice story, and they highlighted the Fund Raiser that Auntie Meggie and Red Robin (Auntie Meg works for Red Robin) put together for me. They had a car wash at the K-Mart in Fairfield. People came from all around to give help and raise money for our trip to NYC.
I want to thank them all for their hard work.
The dedication and love that you show for someone you have never even met is amazing and we are so thankful.

We hope to be home before you know it.
Thanks for everything. We know that without your prayers and hard work I would not be where I am today.
WE love you all.

I will update from the BIG APPLE.
Love,
Jillian

Wednesday, October 23, 2002 at 07:29 PM (CDT)

Dear Family and Friends;
Life is good!
I am having fun and I am keeping everyone on their toes.

We wanted to take time to tell you that I will be going to New York on or about November 4th.
My doctor's have decided that I will need to have the rest of the tumor removed that is around my Kidney.
While we are not happy that this needs to be done, we know that it has to be done to ensure that the cancer stays away. Like I said in one of my last journals, we do not know what is inside of it, so to be sure I will be having surgery next month.
Radiation will likely follow on my legs, and also clinical trials. Neuroblastoma is a sneaky cancer and we want to be sure it NEVER comes back.

I know that my mommy and daddy are worried. Please be sure to keep them in your prayers.
Daddy is going to take time off of work to be with us, but we are not sure how long I will be there, so he may not be able to stay the whole time. Any body want to go to New York to keep my mommy company?

My Auntie Meggie is having a Car Wash this Friday in Fairfield. Red Robin is also sponsoring it. She told me the Red Robin Bird is going to be there. She has put together a great Fund Raiser to help with expenses and for the work that my daddy is going to miss. I love her a lot for her hard work.

Okay, gotta go. My grammy went to Houston and brought me back some clothes from our friend Julia in Houston. She said she sent me some white shoes and some boots........and you know how I like SHOES!!

Love to all of you.
Keep the faith,
Jillian

Monday, October 07, 2002 at 10:56 PM (CDT)

Dear Family and Friends:
Well, it is rare that I make an entry in my journal more then once in a day, but this is a very special day.

The second test of my Bone Marrow shows no evidence of Cancer, and my Bone Scan shows no evidence of disease.
We are all dancing the "Snoopy Dance", and thanking God for all of your prayers.
WE have so much to be thankful for! Life is good.
Take the one you love and hold them and tell them what they mean to you. God listens and we are happy for this!
Keep praying for good things to happen.
Clinical trials, and surgery loom ahead.

Your support has helped me be where I am today!
Please continue to pray for me and my family, we are not at the end of this road yet.
To know that you all have been there for me in mind and spirit is more then words can express thanks.
Just know that I am so happy, and my mommy and daddy are so happy. My whole family is so happy for this day.
Just keep the faith, that this day will continue and I will be cured forever.

Love to you all,
Jillian

Monday, October 07, 2002 at 12:35 PM (CDT)

Dear Family and Friends;
Just a short note to let you know that I have updated the look of my Web page a bit.
How do you like it?
Also there is a new picture of cute little me that was added yesterday.
I look kind of serious, but after all, splashing your feet in the pool is serious business! :)

I have been feeling pretty good, except fot the cold I got from mommy. But, the good thing is I was able to fight it off all by myself!
We will find out very soon if the second test from my Bone Marrow is complete. If it shows clear (free of cancer),
we will begin to make plans to go to NYC. I will need to have the rest of the tumor removed that is around my Kidney. The Chemo and Radiation has gone as far as it can, and the tumor is now like a rock. Nothing more will penetrate it, so surgery is the best answer. You never know what is inside the tumor, so we want it out.
I am sure I will begin to undergo some sort of Clinical Trials as well, after the surgery.

I will be sure to update you on the latest developments.
Just pray all stays smooth sailing.
In the mean time I think I will have a snack and run circles around mommy and daddy again.
Sure is fun watching them try to keep up with me!

Have a fun and happy day!
With love from cute little me,
Jillian

Friday, September 27, 2002 at 01:12 PM (CDT)

Dear Family and Friends;
I bet you thought I forgot about all of you.
Naaaaaa!
I have been so busy. I got to stick my feet in my grammy's pool, play in my Playhouse, and look for bugs and stuff.
So I guess you are wondering what my most recent tests have said about the Cancer.
DRUM ROLL PLEASE.........
My MRI is the same. No new spots, and you can really not even see any of the old spots. This scan was done only of my head.
My CTscan, shows that the tumor near my Esphogus is almost completely gone.
The tumor that was left around my Kidney has not changed since June's scan. At that time it had shrunk some.
They think it is hard and it will not shrink anymore.
My Bone Marrow at the first look is clean.
We have a more extensive test that will take 10 days to check for Neurblastoma. This test can detect 1 NB cell in a Million.
Still waiting for information on my Bone Scan.
Over all my Doctors are really impressed with my progress.

We are very happy to hear this.
Thank you all for your support and prayers.
It means more then I can tell you in words.

I have to go now.
Love you all,
Jillian

Note from the Editor:
Jillian is amazing! She is recoverying with warp speed.
Her Liver has completely repaired itself from the VOD.
She is running, playing,smiling, and getting Potty trained.
She is a gift and has taught us all so much.
Thank you for sticking with us. It has been a long road.
We are not to the end yet. New York may be in her future for antibody studies.
Keep praying for Jillian and her family.
Thanks!!

Friday, August 30, 2002 at 01:58 PM (CDT)

Dear Friends and Family;

So Much has happened since my last journal.
I finished up my last week of Radiation August 16th.
So now I am taking Accutane. 2 weeks on and 2 weeks off.
Next week I will start getting tests again to re-stage the Cancer.

My mommy and me stayed in San Francisco the whole last week of my radiation.
So, I got to go the San Francisco Zoo. I loved the Giraffes!
We also went to a very historic sight called the "Sutra Baths" by the Big Water. (I call the Ocean the Big Water)
The Sutra Baths are not baths at all. It was a place that people went to swim. There was a pool that had water from "the big water" and a pool that had regular water. Rumor has is there was an occasional Shark that made it through from the big water into the big water pool.
The Sutra Baths were sometimes called the "fountain of youth". I think they were crazy to swim in such cold water, and to think that there could be a Shark in there. Yikes!
We also went to the Academy of Science and shopping. (my mommies personal favorite thing to do)
But now I am glad to be home in Rio relaxing and playing.

The doctors are really happy with my prognosis. They say it looks very promising.
I am running around like normal and don't have much time to take a nap. My mommy and daddy sure love that! And my hair is growing back in.
It is hard to believe that one whole year has passed since I was diagnosed.
Yes, it was a year yesterday.

Gotta go.
Love you all!
Jillian

Thursday, August 08, 2002 at 01:47 PM (CDT)

Dear Family and Friends;

I hope all is going well with all of you.
I am doing really good. I am almost finished with my Radiation Treatments, and I will be so glad because this getting up at 4:30 AM is for the Birds. I will complete these treatments August 16th.
I have not had any reactions to the Radiation, such as nausea, or loss of appetite.
In fact I want to eat everything in site and I am running around like a wild child!

I love being two. Everything is a new discovery.
Speaking about discoveries, you will never guess what mommy found in my playhouse.
A BLACK WIDOW SPIDER AND HER EGG SACK. Yikes!!!
She got rid of that in a hurry. Daddy handed her his shoe. He is so cute that way! Personally I think that spiders give him the creeps. Now before I play in the Playhouse it gets an inspection.
We live near fields, so you never know what you will find. My Kitty is always bringing home a Snake, Mouse or Lizard. ( I call them Wizard's. Tee he ;) ) It is all very interesting to me.

I will start getting my tests again next month. These will include MRI, CatScan, and Bone Marrow Biopsy.
My doctors want to see what has happen to the Cancer since my last Chemo and Radiation Treatments.
They call this re-staging.
Please pray everything looks really good.
I really want to get on to some more exciting things in my life.
I got places to go and people to meet and see!

Thank you all for being there and thinking about cute little me!
Love,
Jillian

Sunday, July 28, 2002 at 10:45 AM (CDT)

Dear Family and Friends;

I thought you would want a quick update on my progress.
I started Radiation Monday July 22. I go to SanFrancisco every week day. We have to get up when the Chickens do, to make our 7:00 AM appointment. The sessions last about 15 minutes. I have at least 2 more weeks of Radiation.
So far I am doing really good.
We do get to see some interesting things when we drive to and from San Francisco.
Last week my daddy brought us home to Rio over the Golden Gate Bridge, instead of the Bay Bridge. That was cool!

I have been having so much fun!
I love my new playhouse. You should see the inside.
My mommy decorated it very cute, with flowers and bugs and pretty colors. I keep Bear in in a corner to sit on when I have Tea Parties and listen to my new Cassette player that Auntie Amber got for me for my birthday.
I love that Cassette player!

I can say almost anything these days, in fact my Grammie taught me how to say "Holy Cow".
She is funny.

Well, I am off on another adventure.
Please be sure to keep saying your prayers for mommy and daddy. They sure are doing a lot for me and I know they think I am so cute and everything, but they love me more then anything too. But, sometimes I know that they get tired and worried.
I am so lucky that they had me!
Love,
Jillian

Tuesday, July 16, 2002 at 07:45 PM (CDT)

Dear Family and Friends;

The editor got click happy on the mouse. She added the previous journal ( July 16-please read) before she told you there are new pictures on my web page.

They take a minute to load so be patient.

I look pretty cute if I say so myself!

Love,
Jillian

Tuesday, July 16, 2002 at 07:26 PM (CDT)

Dear Family and Friends;

I am two fingers old now.
I would have written on my Birthday, but I was too busy playing and having fun with my new birthday presents.
All of the people I love most were at my party.
My nurse Melisa was even there. We wondered about her when she was not on time. It seems she was looking for our house, when she had taken a paved road until it was a dirt road, and it was no where near my house! I guess the Internet is not always right when it comes to directions.

Something so exciting happened today. The Make a Wish Foundation came to my house and installed my new playhouse.
It was more then I ever dreamed of! The windows open and close and it can be wired for electricity. I can't wait, so many possibilities!
Thanks Make a Wish! You made me very happy.

Looks like I start Radiation Monday 7/22. I will be going to UCSF (SanFrancisco) everyday from 7/22 for 3-4 weeks.
This treatment does cause some of the same side effects as Chemo, but I hope that I can tolerate them better.

So far I am doing very good. I have been keeping well. I have not had any infections or fevers. My mommy and daddy are so good at keeping their eye on me.

Thank you everyone for thinking about me on my birthday.
I appreciate and love you all so much.

I will keep you posted.
Love,
Jillian

Note from the editor:
Jillian was a perfect little lady on her birthday. She gave every present her undivided attention. Saying Ohh, and ahh at the right moment.
Seeing her feeling so good is such a reward for Jason's and Natasha's family. She has been through more then many go through in a life time.
Keep her in your prayers. We still have some hills to climb.
Thank you everyone.

Tuesday, July 09, 2002 at 02:09 PM (CDT)

Dear family and Friends;

I am so excited to be home.
When I got to Rio Vista, there was a huge sign on our garage door welcoming me home!
It was so nice of my Grandma Rosemary and Aunt Amber to put it there for me.
My Kitty, Lucky was also very happy to see me, and I was happy to see him.
At first I was not real sure about things, but suddenly it all came back to me. HOME is where I was.

Having a Stem Cell Transplant is such a big deal for a little person, and getting to come home was a surprise to my family. The Doctors at Children's Hospital worked it out for me to go to a local hospital in the case of an emergency. If I get a fever, we have to leave right away to the hospital to make sure I do not have any infections. Because my mommy and daddy know what to watch for I am sure everything will be just fine.
When I go outside on windy days, or go to public places, I have to wear a mask for protection. My immune system will be recovering for the next months. So this will be normal for me.
My platelets are staying higher, but I still have to be checked to see if they are needed. I had my last transfusion on Monday. We will wait until Friday and they will get checked again.
If the Platelets hold their own, I may start Radiation treatments July 17th. If I do, I will have Radiation everyday for 3 weeks at 20 minutes a day. I will update you more on this as soon as we know when these treatments start.

I went for a bike ride with my mommy and Auntie Meg. I have one of those cool riders that get pulled behind my mom's bike.
I found out that Make a Wish is going to give me a Lilliput Play House. We will put this in the back yard. It is 7 feet tall, and has a real door and windows. I can't wait to play inside.

My birthday is Monday July 15th. I will be 2 years old.
I am so happy that I can celebrate this day in Rio.

Thank you everyone for thinking about Anthony last Friday.

I am sure I will having some good adventures soon. I will write you later. :)
Thanks for being there for me!
Love,
Jillian

Monday, July 01, 2002 at 03:45 PM (CDT)

Dear Family and Friends;
Today is my 55th day at Children's, and guess what!
I GET TO GO HOME TOMORROW. HOME TO RIO VISTA!
I will get to be home for my 2nd Birthday.

I am doing so much better and am starting to feel like my old self again.
The VOD has calmed down considerably, my tummy is back in shape. Now we just have to wait for my Billiruben to calm down. Which, by the way, is better as well. My eyes are still yellow, but this too will pass.

My daddy came home from Alaska last Saturday. Grammy brought him to the hospital. He was so excited to see me he practically left grammy in the parking lot!
I am so glad he is home. He told me all kinds of Fish stories, like the one about the really BIG fish that got away. :)

I found out the information about our very special friend Anthony. Anthony received his wings Tuesday June 18th, and now sits with all the other Angels in Heaven. Our friend Anthony fought very hard in his battle with Cancer, but he did NOT die from the Cancer. In fact, Anthony was slowing beating his illness. Anthony died of other complications.
We will miss him terribly.
Please pray for comfort for his family and friends.
Anthony will be laid to rest on July 5th, 2002 at 2:00 PM.
As a tribute to Anthony, we ask that you launch a balloon for him at 2:00 PM Pacific Standard time.
My mommy and daddy plan on attaching a special note to our balloon so Anthony can read it in heaven.
Thanks again for being there for all of us here at Oakland Children's Hospital. We build sort of a united front here, where so many things are unspoken, but are perfectly understood.
Love to all of you,
Jillian

Note from the editor:
Jillian is remarkable. She continues to choose to over power her adversity. But we also know she could not do this without your support. For this we all love you so dearly.
Last week was a sad week for our family, but it was felt most by Natasha and Jason.
But, for every time there is sadness we have to look for happiness.
This is how you go on.

I dedicate this journal to Anthony and his family.

Psalm 23
The Lord is my shepard; I shall not want.
He makes me to lay down in green pastures; He leads me beside the still waters.
He restores my soul; He leads me in the paths of righteousness for His name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil; for you are with me; Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies; You anoint my head with oil; My cup runs over.
Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the Lord forever.
Amen

Thursday, June 27, 2002 at 02:23 PM (CDT)

Dear Family and Friends;
Today is my 51st day at Children's.
Today we are very happy. My Bone Marrow Biospy came back negative. NO CANCER was detected. My Cat Scan shows that the Tumor around my Esophagus is undetectable, and the remaining Tumor around the Venacava and Kidney is smaller.
Over all this is great news for me.
My Liver functions seem to be stabilizing, and my tummy is back to normal. I am eating again. Not a lot, but I am trying as hard as I can. Sometimes, some foods still do not look good to me. But give me some Top Ramen and I am happy!

There is a bit of sad news here at Children's. My daddy's Video game buddy lost his fight with Cancer and on Tuesday of this week he got his wings.
When you have been here as long as I have, you build an extended family. We are so sad to have him leave us and will miss him very much.
Once I find out when services are, I was thinking we all could get a balloon and let them go in his honor. Maybe attach a note so he can read them in Heaven..

Again thank you so much for your support, love and prayers. It gets me, mommy and daddy through so many days.
Love,
Jillian

Monday, June 24, 2002 at 10:18 AM (CDT)

Dear Family and Friends;
Oh boy today is my 48th day at Children's.
I know these halls like the back of my hand.
I was walking with Grammy yesterday and saw the smallest red heart sticker on the floor, and I made sure that Grammy saw it too. The nurses give us lots of stickers here. I have a lot of different bug stickers on my 5th floor window. I think the Lady Bugs look the best.

My Grammy and Papa went to a BBQ in my honor Saturday night. The Sonoma Street Rodders had a fundraiser for me on Nov 17th, 2001. They helped raise money so my Mommy and Daddy would be able to focus on getting me well instead of money. They did an awesome job at this fundraiser. There were so many people there, and most we did not know. They came from everywhere just for little me!
Grammy had my great Aunt Sharry make some very special Angels. She gave one to each of those that helped at the fundraiser.
Grammy picked Angels because she thinks I am one! (she did not see how I was acting for my Mommy the other day....whew good thing. She might think I was a little Devil! ;)
Once again Charlene Maydole and Lynne Lewis went out of their way to make the BBQ a great event. Thanks to them and a big cyber hug from me.

I am feeling better. My tummy has gone down in size, but the levels in my Liver have not seemed to calm down. We will have to wait and see what the NEW Sonogram will tell. I get that today.
I had an MIBG scan. I went to UCSF for this, and that is in San Francisco. This is a scan that is special for Neuroblastoma.
I also had a Bone Marrow Biopsy last Thursday. These tests are always good for putting stress on my family. Because they tell the good and bad. We hope and pray that the Cancer is smaller and there is no signs of Cancer in my Bone Marrow.

Auntie Megan and her friend Brooke and his family went to the "Walk for Life" in Vacaville. They had a picture of me on their back. This was a walk for Cancer research. People walked that have survived Cancer, and others walked for those that are fighting Cancer or those that are now in Heaven from Cancer.
Please remember to join "The Relay for Life" in your city. To get information contact your local American Cancer Society.

My Daddy went to Alaska. He went fishing. He will be home Saturday. I know he was not sure about going, but Mommy said she would be okay, and I was doing better so he went. I miss him!

That is really all I have to tell you right now. I am looking better, my skin is still brown from the Transplant and the Liver has also made me kind of yellow brown.
I will be back to normal, just have to wait for my body to do its job. We all knew it was going to take time.
Nothing ever seems to happen as fast as we all would like it to.
Take care everyone.
With love,
Jillian

Monday, June 17, 2002 at 10:03 PM (CDT)

Dear Family and Friends;
Today is my 41st day at Children's.
Can you believe that? I can, it has been a long time since I have been outside.

My Liver functions are still elevated. The Doctor's can not quite figure out why the test levels have remained the same.
The good news is that I had a really good weekend. I played hide and seek with mommy and daddy. I also ran around with some friends I have made and played on the computer.
Tomorrow I begin my diagnostic testing to determine how much of my Cancer is still present. We will let you know the results as soon as we can.
Love,
Jillian
A note from the editor:
I will be out of town on business through the rest of this week. So there will not be any updates until at least Friday 6/21.
"The Relay for Life" is this Friday in Ukiah. Jillian will have an honorary luminary lit for her. This will stay lit until sun up. Think about Jillian and the many others that are fighting and surviving Cancer.

Wednesday, June 12, 2002 at 02:39 PM (CDT)

Dear Family and Friends;
Today is my 36th day at Children's
My Liver is starting to work better, although there is still a lot of bloating in my tummy. But, everyday the results of the Liver tests show that things are getting better.
It has been uncomfortable for me, so I am looking forward to the day I have my slim and trim figure back.

I still have not eated any solid food. I do drink some, but only when I feel like it.
I am still hooked up to IV nutrition and IV fluids.
We hope that this changes soon.
Good news is I am taking some of my medications by mouth now. That is a major deal for me, because they taste bad.

I do continue to walk up and down the halls and see my friends.
Yesterday, my grammy brought me some cool music instruments. I hope to be entertaining the whole floor soon with my Tamborine, Jingle Bells shakers and my Triangle. They sure are noisy. Was'nt that nice of grammy? ;)

I hope I have more to report in the next day or so. It will be great to hear that we can go home. We are still not sure when that will be.
One last thing.
The "Relay for Life" that is put on by the American Cancer Association is going to be happening in Ukiah, Ca.
One of the many Neuroblastoma survivors and his family will be attending. In Jillian's honor this family is going to light a luminary light for Jillian that will stay lit until the sun comes up. The race starts in the evening and the money earned will help others fighting Cancer.
Keep us in your thoughts a prayers.
Love,
Jillian

Sunday, June 09, 2002 at 07:30 PM (CDT)

Dear Family and Friends;
Today is my 33rd day at Children's Hospital.

Today is my mommy's 22nd birthday, and she is spending it with me.

Happy Birthday to you.
Happy Birthday to you.
Happy Birthday dear mommy,
Happy Birthday to you.

Without you I could not be me.
Thank you for everything you do for me.
You make me feel safe and strong.
You mean everything to me mommy!

Love,
Jillian

Saturday, June 08, 2002 at 12:44 AM (CDT)

Dear Family and Friends;
Today is my 31st day at Children's Hospital.
I am still recovering from VOD. My tummy is very bloated, and I am very uncomfortable. It will be a while before things start to calm down. My Liver will repair it's self, but it will take time.
I did manage to drink some apple juice today.
We got some very good news from the CatScan that I had to have this week. The tumor that was attached to my Esophagus is no longer visable. My Doctor was very excited about this. It looks like the Chemo is doing more work. This could also mean that I may not need another surgery.
After I start feeling a little better I will be starting my Radiation treatments.
They will not wait much longer to begin the next step in my treatment. Time is of the essence.
Right now I am doing okay, but I feel the best when I can hold my mommy's hand.
My grammy told me the birds that fly by my window are Crows. I can't believe that I still get excited over the Bay Area Rapid Transit train that goes by every few minutes. I have a great view, because I am on the 5th floor.
Well, I hope to have more to report in a couple of days.
Thanks for your thoughts and prayers.
Love,
Jillian
A note from the Editor:
Jillian is one of the bravest little people I know. (we have met some very brave children, and they are on the 5th floor of Oakland Children's Hospital) It amazes me that a little girl that is barely two years old can teach others so much. Her tenacity and sheer will could move a mountain. Today she got up and walked around even though it was crystal clear she did not feel well. But, she wanted to walk and see the nurses and other patients that now are apart of her extended family. We thank God everyday that she chooses to be strong.
Black Elk said it perfectly:
"Grown men can learn from very little children for the hearts of little children are pure. Therefore, the Great Spirit may show to them many things which older people miss".

Wednesday, June 05, 2002 at 07:17 PM (CDT)

Dear Family and Friends;
Today is my 29th day at Children's Hospital.
I really want to go home. But, the CatScans came back with the news we did not want to hear. I have a condition that is a common occurance from Transplant.
It is called "VOD". Veno-Occlusive-Disease, in short what it means is my Liver is not functioning correctly. The Blood Vessels become swollen and everything backs up. My Liver is not able to do it's job. This is very common between the 1st week to the 4th week after transplant. The good news is this is a reversable condition.
That means, my Liver can repair its self. I will be here at Children's at least through this week. The Doctor's have started giving me medicines, Platelets and Blood Transfusions regularly to correct this condition. It may take weeks, it may take months. The GREAT news is the tumor that was not able to be removed around my Kidney has shrunk considerably. This is awesome news. The Doctors had talked to mommy and daddy about another surgery before my Radiation starts, so maybe this will change things some.
I know I am sick of it here. They are great to me, but I want to go home.
My mommy and daddy never leave me, so I know they want to be home too.
Please pray that the medicines will work fast. My tummy has been hurting, and I have been sick.
I know that you are all out there thinking about me. I could never tell you in words what this means to me and my family.
I got to go now.
Keep the faith!
Love,
Jillian

Monday, June 03, 2002 at 08:15 PM (CDT)

Dear Family and Friends;
We were able to download a new picture to my Web Page today.
Thanks to Auntie Amber and her Scanner we were able to get the picture that was in The Reporter Newspaper.
I also posted another journal previous to this one that is dated today's date.
So check me out!
Love,
Jillian

Monday, June 03, 2002 at 07:41 PM (CDT)

Dear Family and Friends;
Today is my 28th day at Children's Hospital.
Well, grammy survived her stay with me last friday night. We only played and watched movies until almost midnight. Grammy never said it, but I think she was happy when I finally went to sleep watching "Stuart little". She thought that Stuart was a Rat, but I reminded her that he is a mouse.
I am still not eating, so I will continue with the IV nutrition for 16 hours per day. I did drink some Apple juice yesterday. I just wish I felt better. My tummy has not felt well, so today they took me for some Xrays. Tomorrow I will get a CatScan to check things out more. I was starting to bloat in my tummy so the doctors are concerned. Sometimes the Morphine can cause stomach problems and they need to be sure that my Liver is functioning correctly.
Because I cannot take my medications by mouth yet, and this latest development, I will NOT be going home tomorrow.
I know that mommy and daddy are worried about me. I know that they are tired and just want us all to go home. I know that they just want me to be healthy again.
But, Cancer does not work like that. It does what it wants to, and the medicine that they give you to make the Cancer go away has its risks as well.
I am tired now. I have been trying to get better so I am going to sleep some more.
Keep us in your prayers.
Pray that the CatScans show only good things.
Love,
Jillian

Friday, May 31, 2002 at 09:54 AM (CDT)

Dear Family and Friends;
Today is my 24th day at Children's.
Yesterday my grammy and Auntie Meg came to visit. It was very good to see them and take them for very fast walks up and down the 5th floor. My grammy better learn to catch up with my IV pole, because she is staying with me tonight. I will be sure to take her up and down the hall several times.
We will go to the play room and say hi to all the kids. I am sure we will do this at least 100 times, just to make sure she gets a good night sleep.

My voice is still horse, and I am still not eating much. I tried some Nacho Cheese Doritos. They told us that the Chemo this time knocked out some of my taste buds. This is common, but I did not have this problem with past Chemo sessions. I seemed to be able to eat anything. I use to love Reeses Pieces, but now they taste yucky.
The Doctor's said the taste buds would slowly come back. So until then I will have to be on IV nutrition. This is a bag of white stuff that looks kind of like milk.
I will be hooked to this about 16-18 hours per day. If I know my mom, she will have me on this through the night while I sleep, so she and daddy will not have to run with the IV pole to keep up with me.

It looks like I will be released from the hospital Tuesday. The really good news is they are going to let me come home! Home to Rio! They said I am doing so well, and that mommy and daddy take such good care of me that they feel home is the best place.
So mommy and daddy are getting our house ready. Carpets cleaned, walls, windows, everything will be wiped down. I am looking forward to getting home. The nurses and Doctors are so nice to me, but really, there is no place like home.

I will keep you all posted.
I have to go now. I am thinking up new things to do tonight when grammy is here.
I can't wait!
Love,
Jillian

Wednesday, May 29, 2002 at 01:23 PM (CDT)

Dear Family and Friends,
Today is my 22nd day at Children's Hospital.
May 25th the doctors told my mommy and daddy that my engraphment took place.
That means that my Stem Cells are working and helping my immune system get back into shape. My white count had gone to "0", but is now making a recovery by leaps and bounds. My doctor's are also thinking about releasing us to our home in Berkeley next Tuesday. (June 4th) This would be about 10 days earlier then they expected.
They said I was the second fastest patient to get whipped back into shape this fast.
I know this has so much to do with all of your thoughts and prayers, and my will to get out of my hospital bed and go outside again!
I am loosing my hair again and my voice is horse and I am not quite eating yet, but I feel better then I have in quite a few days.
The Chemo was very strong, but it has to do its job so I can get well.
The Fund Raiser at Chevy's was a great success.
It is over whelming at times to know just how many care. Sometimes you wonder how saying thank you could ever be enough for the love, kindness and time spent on thinking, praying and taking care of me.
Thank you all. I love you!
Love,
Jillian

Thursday, May 23, 2002 at 11:26 AM (CDT)

Dear Family and Friends;
Today is my 16th day in the hospital.
I am feeling very yucky. I have fever's and yesterday my fever was 102.6. Today it is over 100. I still have Mucusittis. Just like the name sounds this side effect creates extra mucus and secretions. They are keeping a suction machine near me just in case.
I have also had an oxygen sort of blowing towards me. I was not connected to it, but it was near me. I continue to be on IV Nutrition, and antibiotics. One of my lumine lines has a blood clot in it, so the nurses are giving me something to break that up. They found that when they tried to take my cultures (blood draws) that the line was not working right.
And to top it off, I am cutting some more teeth. So I feel grumpy!!
So mostly I just like to sleep and have mommy or daddy hold my hand.
The Doctor's say this is likely to continue for a few days.
Just remember these are all side effects of the Chemo, and because my immune system is gone at this point it so easy for me to get sick.
We hope soon that the drugs that make the White Count recover along with my new Stem Cells I will start to feel better and my body will be able to fight off what ever gets in my way.

Tonight My Aunt Laura and Uncle Jeff are hosting a fund raiser for me at Chevy's in Dixon, CA. I had my picture in the paper announcing this event!
I love you Aunt Laura and Uncle Jeff, you are the best!

Please say a prayer for my family. I know my mommy is really tired today. I had a rough night. (it was mommy's night with me).
Thank you for the cyber hugs!
Love,
Jillian

Tuesday, May 21, 2002 at 04:16 PM (CDT)

Dear Family and Friends,
I have been in the hospital 15 days today.
The Chemo is starting to give me some side effects. My grammy and Auntie Meggie came to see me last night, and I was not feeling that good. I have had some vomiting, tummy aches, and now Mucusittis. (I am sure that is spelled wrong) It is a condition that makes your mouth, throat, and digestive tract very sore. I hope this does not last long. I love to talk, and this does not make it easy for me. I also have not been able to eat like I was. So my doctors have put me on IV Nutrition. I will be hooked up to this for about 20 hours everyday. I am also Neutropenic.
That means that my White Cell counts are 0.3. Normal counts are 5.0-15.0 thousand per milimeter of blood. The next few days will mostly likely include a Platelet transfusion to help my White Count recover.
All of these side effects were to be expected. The good thing is I did not get them as soon as some kids do during Transplant.
For the most part things are okay for me. I just wish I could be home with my kittie, my ducks and toys.
I have to make one change about my last journal entry. The additive for the Stem Cells during the Transplant is not DSMO. It is called DMSO.
One last note, the hospital told my mommy and daddy that they have our house ready when I leave here. They think I may be able to leave the middle of June. Because my Immune system will still be recovering, I will not be able to live more then 30 minutes from Children's Hospital. I forget what the house is called, but we will be in Berkeley, Ca. for about 60 days after I leave here.
I hope you all are doing well. I love to read the guest book. It means so much to mommy, daddy and me. Thank you.
Love,
Jillian
A foot note from the editor:
This journal entry system does not have spell check. So if the writer appears to be lame and confused this only part of the reason.

Sunday, May 19, 2002 at 09:58 AM (CDT)

Dear Family and Friends,
Today marks my 12th day at Childrens Hospital. Yesterday they took me off of all the transfusion lines. That is so great, because now I can run down the halls with out the IV pole. My Grammy called my mom last night to check up on me, and I decided to take a walk by myself. I know where I am going so I did not know what the big deal was when mommy came to get me! I love my nurses. I let them hold me now, and carry me around the 5th floor. When I first came to Children's I did not like very many people here. Now we are old friends. I better tell you how my Stem Cell transplant went. It did not take long to do. They brought my Stem Cells Frozen to my room. The nurses did some stuff to them, and then hooked a bag of them up to me
The Stem Cells are kept with an additive agent called DSMO, so it was kind of stinky in the room. My mom said it smelled like a dairy. Not the real stinky stuff, but what it smells like when you milk the cows. I noticed they did not want to get to close to my breath. They said the smell would go away in a couple of days. I did not get sick through this process. In fact I have not been sick much at all. Well, ok the other day I threw up all over daddy. Good thing he brought extra clothes. :)
I have still been eating some. I will be glad to get outside, but when I do I will have to wear a mask for a few months. No public places. I won't be able to go to McDonalds for a least a year. My mom and dad are going to have to watch everything and everyone like a hawk. But, that will keep me from getting bad germs and getting sick. I have to go now.
Remember how much you all mean to me.
Love,
Jillian

Wednesday, May 15, 2002 at 11:33 PM (CDT)

Dear Family and Friends,
I really had not planned on writing today, but thought I would tell you that I am still doing okay. I did have a little sickness this morning, but I still went to the play room and had some fun. I even did some coloring. My great Granma says she named me "Jilly Bean" after some great artist. So I thought maybe I would practice my coloring technics. Who knows maybe some day I will be a famous artist!
I have some sad news. My friend Eddie does have Neuroblastoma. He is only 7 years old. I went to see him last night and show him my Catheter. He is getting one today. My mommy told him that all the medicines and blood draws would now be done from the Catheter. No more Pokes! Eddie was happy to hear that.
Please pray for Eddie and his family. They are having a real hard time right now.
Tomorrow (May 16th) my family is gathering with Nancy. She will be telling them what to expect in the next months. My immune system will be recovering, and as it does there will be rules. No one can kiss my mouth, or share their food with me. Washing their hands will be the # 1 rule! If I get a bag of cookies....guess what it is all mine. Hehehehe. My hand is the only one that gets to reach inside.
I will tell you all about it later, but I am very tired now.
There are some very special people in this world. I know that you all care so much.
I love you for that. Please say an extra prayer for mommy and daddy. They are tired, and worried. They take turns staying the night with me. The best thing in the world is waking up in my hospital bed and seeing mommy or daddy here waiting for me. Thanks for that. I love you both very much.
Bye for now.
Love,
Jillian

Tuesday, May 14, 2002 at 12:50 PM (CDT)

Dear Family and Friends,
Today is day 6 of my 6 day Chemo treatment.
I am so glad, because now I get to have a rest for 2 days. Friday (May 17) I will get my harvested Stem Cells back in a transfusion. I am going to ask God to make sure they know how to get back where they came from. These are my own baby Stem Cells, and they are going to help teach my immune system to do its job again.
My daddy learned how to change my dressing on my Catheter. I have a special Catheter in my chest that the doctors and nurses use to give me the medicine and take blood draws. I know it sounds weird, but this keeps me from getting poked all the time. AND, that makes me happy! Everyday I now have to get my dressing changed that protects the Catheter to keep me from getting infections. My daddy Jason learned how to do this and I think he was nervous, but I trust him with all my heart. He loves me so much.
I never realized how lucky I was until the other day. I heard my mommy talking to Eddie's Grandma. (remember, Eddie is my new friend at Children's Hospital). Mommy was telling his Grandma how she felt about my treatment. Mommy told her it was hard to make some decisions, but she and my daddy believe they had made the right decisions. You know what, some people believe that the cure for Cancer is worse then the disease. My mommy and daddy believe in the cure, my cure.
I have to go now. But, I wanted to tell you that I have been reading my guest book.
It is so cool to see all of you signing in.
I love all of you too!
Love,
Jillian

Saturday, May 11, 2002 at 12:40 PM (CDT)

Dear Family and Friends,
Today will be the start of my 3rd day of a 6 day Chemo treatment.
So far I have felt great.
Thursday I had a cheeseburger, and I could not believe I ate the whole thing.
I like to walk in the halls of the 5th floor (the Oncology floor) and see the new friends that I can make. There is one little girl named Haley. She is only 13 months old like I was the first time I stayed here. I am a big girl now, so I talk to Haley when we pass her room. My daddy and I like to make sure she is alright. We met a new friend last night. His name is Eddie. We are not sure how old he is, but he is very sick. They think he might have Cancer too. He is a great Nentendo player. My daddy let him borrow some of our games we brought from home.
My grammy and papa came to visit, and we played in the play room. I showed them around. I have been having fun and am running around so much. The nurses AND my mom and dad can barely keep up with me. I heard my mom kiddingly ask about valium.
I wonder what she meant by that. ;)
Oh well, I seem to be doing okay so far. My nurse Melissa told my mom and dad that I could start to feel the effects of the Chemo today. Melissa is my best nurse. I even like to sit on her lap!
She says it sounds like I speak Chinese, but my papa says it is "Jillinese".
Well, I have to go for now. I will write again soon.
Thank you for all your nice thoughts and prayers. I love you.
Love,
Jillian

Wednesday, May 08, 2002 at 07:11 PM (CDT)

My name is Jillian Rose.
I was diagnosed with Neuroblastoma Cancer on August 29, 2001. I was only 13 months old.
My Grammy is putting together this web page so our friends and family can learn about my treatment and my progress.

I know that this has been very hard on my family. They love me so much.
I had not been feeling very good for a few weeks, but no one ever suspected that it could be Cancer. I had all the symptoms of regular childhood illnesses. First they thought I had an ear infection, then an eye infection, but it was when I started to Limp that they knew something very different was going on.
Since August 29, 2001 I have had 8 Chemo Treatments, surgery to remove a tumor that was attached to my Aeorta, Esophgus, and Kidney. I had surgery after the Chemo had shrunk the tumor by 50%.
Today marks another monumental event. They will start my 9th Chemo to get me ready for Stem Cell Transplant. They hope that this will help the Cancer go away.
We will not know for awhile, so I will be sure to have Ma (short for Gramma) update my Web site. Thanks for visiting.
Don't forget to sign my guest book.
Love,
Jillian

Wednesday, April 24, 2002 at 09:27 AM (CDT)

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