Journal History

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Wednesday, September 5, 2007 8:14 PM CDT

Well, it's been yet another year. Jessi would have been 12 this September. It hasn't gotten any easier to understand that she's gone, or why, but, as always, we just have to keep moving on. This past August 28th made the fourth anniversary of her death - Nici and her family released a bunch of balloons in Jessi's honor, which I'm sure she's still enjoying. Like me and Denise say, hopefully she's got my weekend pass ready, because I'll probably need it to visit.

Even after the year or more that it's been since we last updated this page, not too much has really changed. I'm currently in Cherry Point, NC awaiting deployment in January back to Iraq. They originally weren't planning on sending me back, but I guess thy finally got tired of hearing me complain, so they're gonna send me. Denise, unfortunately, stayed in California, but that's where she's comfortable, so I'm not going to complain too loudly about it.

Denise is busy working on the house, making all sorts of improvements to the kitchen, dining room, and bathrooms. Eventually I'll even get to see it! Myself, I went and bought a motorcycle so I've been busy trying to make Nici "comfortably wealthy" with my life insurance. Like I said - keep that weekend pass handy.

Oddly enough, I'm looking forward to deploying again. It's why I came back to my Marines - not to sit behind a desk. We'll just be out there for seven months (Only half as long as my little brother, Kjell, who's now a 2d Lieutenant in the Army up in Alaska - he gets back there again in May). I figure it's less dangerous to be there than the way I ride, so such is life.

Anyhow, I hope everyone out there is doing well. I know that the posts here are getting fewer and farther between, but I think that's to be expected. Y'all have a good one, and I'll try to keep you informed a little better in the future.

Wednesday, July 5, 2006 6:01 AM CDT

Pictures updated July 24, 2006

Well, I know it'd been one heck of a long time since this has been updated (October was the last time I edited anything on it), but things have been rather hectic with everything going on.

Currently, I'm in Bahrain (A small island off the coast of Saudi Arabia) hanging out and soaking up the sun. Plenty of it out there. I'll finally get home after a year here in mid-August for a few weeks before I move to North Carolina to be back with the Marines of the 2nd Marine Aircraft Wing. Since I deploy, yet again, in February (Back to Iraq - woohoo!!!), Denise is going to stay in California until just before I get back from there in September 2007. So, effectively two years apart - glad we have a strong marriage!

Nici's seems to be hanging in there. Unfortunately, I'm not there for most of the important stuff, but I will be home for the 3rd anniversary of Jessi's death this August. Has it really been that long? Doesn't really seem like it. Mother's Day, Jessi's birthday and things like that seem to be the hardest for her to handle, which I find perfectly understandable. I know there's a few days - Father's Day and our wedding anniversary (Jessi showed up with purple hair and purple cheetah-print PJ's for the ceremony), plus the really obvious ones that really suck for me.

Anyhow, I really didn't have much to do updates on, so I'll be running along. Hope everybody out there in TV land is fairing well. Maybe I can convince Nici to throw her two cents in here when she has the chance. Talk to y'all again soon!

Aaron

Sunday, August 21, 2005 2:09 PM CDT

Such a little girl
Living grown up dreams
Shooting for the sky
With a smile and eyes that beam
Her living an example
Her death was a surprise
Mommy’s little angel
Finally gets to fly

She touched so many lives
She made us see the light
Dreams are only dreams
Unless we live them day and night
Her life here may have ended
But her soul will never die
Daddy’s little angel
Finally gets to fly

Nothing left to ground her
Spirit… finally free
The world hers to discover
“From sea to shining sea”
Yearning for the blue skies
As she waves one last goodbye
Grandma’s little angel
Finally gets to fly


It has been Two years since you left us... you are sorely missed and NEVER forgotten
Love Momma

October 2nd, 2005
Just a little side note from Daddy - Jessi's Aunt Elke and Uncle Kenny had their first child, Gianna AnneMarie Betonte on October 1st. She was a healthy 7lbs 3oz and 20 1/4 inches. Congratulations!

Aaron

Wednesday, July 20, 2005 3:51 PM CDT

Hello all,
Mom, Aaron and I just got home from the Neuroblastoma conference in Chicago. We had a good time and met alot of really special people.
Aaron leaves on August 17th for Bahrain... he will be gone one year. Sometime in October we will find out where he will be stationed when he comes back to the states. We are hoping for Washington state, we could sell our house in CA and put about 50% down on one there.

We have also been talking about adoption, probably international and maybe even trying to get pregnant. these are hard, emotional decisions... but we were good at being parents.... maybe we can be again?

Talk to you all soon
Denise

Tuesday, May 10, 2005 8:28 AM CDT

Hello everyone...
Well, I survived Mother's day, Barely.
Next weekend is the Relay for life, our team exceeded our goal of $5000.00!
For those of you who don't know, we have a relay team called Jessi's Angels made up of Jessi's friends and family... and even one of her teachers!
I think Jessi would be proud.

OOps! I have to move some of my inmates around, I'll get back to you in a minute
Denise

Okay, all of my convicts are in their rightful places... where was I?

Aaron is leaving for wisconsin on the 12th of this month, his little brother Kjell is being commissioned into the Army and Aaron is going to pin on his bars (probably not very gently).
I am staying home for the relay.

In August Aaron deploys to Bahrain for 1 year, which is better than 3 years on a ship.

In July Aaron, Mom and I will be going to the Neuroblastoma conference... I went last year, it was a wonderful experience. There was a whole group of "Angel parents" and we actually laughed quite a bit - and didn't even feel guilty about having a good time!
I'll add more later
Peace and love
Denise


Well,
the relay is over. Aaron is home. We have nothing to distract ourselves with... The pain sets in again.

Saturday, March 12, 2005 0:20 AM CST

Hello everyone... It's me again

Well folks, there is not too much new to report; I am back at work (night shift bites!) but at least it gets me out of the house. Aaron leaves in August for Bahrain... he will be gone for a year, but at least no one should be shooting at him (emphasis on should... Aaron attracts trouble)

For those who are interested... The relay for life is coming up, This is the second year we have had a team in Jessi's memory - JESSI'S ANGELS - for anyone who would want to sponsor our team, checks should be made out to the american cancer society, you can email me for the mailing address.

For those of you still in the fight, disregard the previous paragraph... you have a long hard road and you need to take care of yourselves right now.

Peace and Love
Denise

Wednesday, December 1, 2004 10:00 AM CST

Good morning! Looks like Christmas is upon yet again. I just wish that Jessi was here to enjoy it with us. It's not the easiest thing to deal with, but Denise and I are trudging our way through. At least we managed to get lights up this year (Jessi would be proud - we have enough light for the guys in the space station to see us!). I doubt we'll do anything inside, but the outside was quite an accomplishment.

Unfortunately, two more of Jessi's friends from the hospital have passed away in the last month, Paige and Erica. Denise went to Paige's memorial in LA, but we haven't heard anything about Erica's yet. I'm sure that Jessi's showing them around making sure they have everything that they need.

Other than the Holiday Blues, things are going fairly well. Denise is still off from work for a little while longer, and I'll be around the area until at least next September. We're not sure where I'm headed at that point, but that's the Navy for ya, I suppose.

Anyhow, not too much to report. Ya'll have a good holiday season, and I'll gab at ya' later!

Aaron

Thursday, August 26, 2004 8:43 AM CDT

Hi there! Been quite some time before I put anything in here, so I thought it was about high time I do so. I'm still in Iraq, but I'll be home finally by mid-September. I'll miss the anniversary of Jessi's passing, but I'll be home in time for her birthday.

I think my mind is held a little easier by the fact that right now Nici is surrounded by people. We have some friends staying at our house with their kids, as they're moving out to our area from Las Vegas. I'm hoping that having them around takes a little of the edge off of Saturday.

A lot of people have mentioned that it doesn't seem like a year has passed since Jessi passed away. I just can't believe that it's been almost four years since our whole ordeal started in January 2001! It amazes me to look at all of the entries in the guest book and all of the journal entries we made. The number of people that either knew or were touched by Jessi just awes me every time I think about it.

It is a little strange to try and remember that Jessi won't be there when I get home. I got so used to her big old cheesy smile and her hollering "Daddy!!!" whenever I'd get home (Unless I had managed to upset her) that now I can't imagine stepping in the house without it. There was only a period of about 4 months between the day she passed and the day I left to come out here, so I don't think I ever got used to the abscence. I think, in all honesty, that that's what I'll miss the most.

Other than the obvious, I think everyone is holding together pretty well. It certainly hasn't been easy, but with all of the support, it hasn't been impossible to handle. As always, I want to thank everybody for everything, from friends at home to "internet acquaintances". It's all meant a great deal to myself and Nici.

I had better run along. I'm packing to move to a larger base in preparation for "redeployment" (New term for getting the heck out of dodge). See everyone soon!

Friday, July 16, 2004 12:31 AM CDT

Hello everyone...

Well, here it is the middle of July and I haven't had a mental breakdown yet. Or maybe it's happening right now, and I just can't tell the difference. I know I spend more time crying these days than not, and there is a hot pressure in my chest that doesn't go away... does anyone out there know what a breakdown feels like? Let me know...

Anyway, this is not (or shouldn't be) all about me, this is about Baby bear, and how much we all miss her. We are 6 weeks away from her one year anniversary of being an angel, I hope and pray that she is happy and pain free... and that the time until I see her again passes quickly (No, I am not suicidal).

Jessi is / was/ always will be my very special baby...

PLEASE help me to keep her memory alive... she always worried that she would be forgotten.

Thank you all, I Love you
Denise

Thursday, June 17, 2004 12:30 AM CDT

Hello everyone,

Well, we are coming up on ten months since we lost our Baby Bear... and it seems to be getting harder instead of easier. I'm not sure exactly what I am planning on saying, I just know it's been awhile since I have updated this site.

NEUROBLASTOMA SUCKS!!!!! Right now I know of three kids with Neuroblastoma who are in hospice and preparing to die, by the time you read this they may already be gone. I don't understand why or how this happens, WHY must our children die?

I wish I had the answers, for me and for those of you that are in this world with me.

I MISS MY BABY!!!

I will fix this when I get myself together...
Denise

Monday, May 3, 2004 10:33 PM CDT (0730 Iraq time)

Hi everyone! It's been a long time since I wrote anything in here, but I figured it was about time.

As we speak, Denise is in Hawaii for our friends Missy and Troy's wedding. Should be a beautiful ceremony on Maui. Unfortunately, I won't be able to make it, but when duty calls, us sailors answer and head off to the sound of the bugles.

As for me, I'm going to be in sunny Iraq until Mid-September. For those of us where I am, the war seems kind of far away, until the medical evacuation helicopters show up bearing patients from the "real" combat zones. Being a hospital corpsman has it's good and bad sides. We are highly respected and treated well by our Marines, but on the other hand, I have seen more ways a person can be hurt in the last three months than I think I ever wanted to see. I guess they're right - there are things on deployments like this that you'll never forget.

I haven't had too many chances to speak with Denise, but I know that our friends and her family have been keeping a pretty close eye on her, to make sure she's okay. I am glad that she has people to lean on while I'm not there. Really takes some of the weight off of my shoulders.

I don't know if I'm just really strange, but every time we lose one of our soldiers, sailors, or Marines, I just think to myself that right now, Jessi's got them by the hand, guiding them around, getting them all checked in everywhere they need to go. Maybe it's just a coping mechanism, or mebbe I'm a couple of Coke's shy of a six-pack. There are people that would argue either way. Besides, Jessi always did love a man in uniform!

Anyhow, I'd better get running along before someone decides to come looking for me. Hope everyone is staying safe back in the States. Talk to y'all later!

Aaron
"Somewhere" near Bagdad, with the Marines

Wednesday, April 14, 2004 5:42 AM CDT

Good morning all...
I'm sorry that it has been so long, but my organizational skills seem to be lacking these days.

Aaron is still in Iraq, (Fallujah to be precise) and if you folks read the news you know why that isn't really a good thing. I don't know any more about what is happening there than you do, but I know that Aaron is taking good care of his Marines and that he seems to be handling it all pretty well.

It was Easter this past week... another in the procession of first things without Jessi. I can tell you right now that Mother's day will truly SUCK this year, as will many other firsts to come.

You know, sometimes I go for a while without breaking down, and I think it means that the worst is over... but noooo, just when I least expect it it bites me right where I sit and I end up with a day like today. Today started out pretty normal (if my life can ever be considered normal) I got up after dark to come to work and watch over criminals all night, I emailed my husband at war in Iraq to say good morning, and I checked this web page to see how long it has been since I updated it... and looked at the face of my daughter who has been dead for seven odd months in the arms of the man I love (who is also too far away to hold) and I lost it!
So here I am, crying at the County Jail (probably not the first to do so) and I decided to write to you all and share it. Thank you to everyone who still visits this web page... it feels good to know that Jessi has not been forgotten, that her life still holds meaning to more than just her family, that someone other than I remembers that she lived, and she lived well. Jessi never knew a stranger - everyone was her friend. I remember once when she was very small, she told me "everyone loves Jessi" and she was right.
Jessi never passed up an opportunity to try to brighten up someone's day, even on her worst day.
Jessi's last words to me were "you are my favorite person in the world, thank you" for what? because I got her apple juice to drink on her death bed. She could have demanded the world right then and I would have moved heaven and earth to get it for her, and yet she thanked me so effusively for a simple cup of juice. That was my Baby bear... and I miss her. Denise

Tuesday, February 24, 2004 12:39 AM CST

Hi Guys!

OK, where to start.. Aaron is in Iraq, but not yet to where he will be stationed. Apparently they are stuck about 100 mi from baghdad and can't seem to get to their airbase because of bad guys shooting at the planes with rocket propelled grenades. So Aaron is now living in a temporary tent village until they figure out how to get there in one piece.

On a sad note...
Eric Pintard, Pitching coach for the Forresters and founder of Hugs for Cubs for terminally ill children died yesterday at UCLA medical center. He had Brain cancer.

The only thing that helps right now is the knowledge that He and Jessi are probably playing catch right now. Take care of him Baby Bear... show him the ropes.

Monday 3/2/04 UPDATE
Aaron is finally where he is supposed to be, he is very excited to report that he has been officially shot at three times! (not him personally... but the shots came in his general direction) I believe that given a week or so the newness of being shot at will wear off and Aaron won't be so excited about it... then he can enjoy things like sucking chest wounds and setting broken bones (whatever Corpsmen like to tell "War" stories about)
Talk to you all soon,
Denise

Sunday, January 25, 2004 12:39 AM CST

Hello everyone!
Well, Aaron has signed into his new unit; 3rd Marine air wing. They are at 29 palms in southern california until late in Feb when they will leave for western Iraq. They will be approximately 35 miles as the crow flies from Baghdad.
It looks like he will be there for more than six months, but they do not have an exact(or even estimated) date of return.

SO, I am planning on half a year of home improvements and girl movies... and probably taking care of various orphaned animals.

We are coming up on 5 months without Jessi, and it seems like forever.. and only yesterday. I still miss her crooked smile and her silly laugh... I know I always will.

Wednesday, January 7, 2004 3:23 PM CST

Hello everyone, It's been awhile.
It has been just over four months since Jessi left us, but her spirit remains all around us.
It seems that Jessi is very worried about the orphaned animals of the greater Lompoc area, She has placed a "free room and board" beacon above our home.
In November Aaron discovered a lost puppy by our back fence, within 2 hours her mom and 6 brothers and sisters were also residing at Jessi's boarding house for lost animals.
We were able to find homes for 6 of the puppies (the one who found us now lives here, her name is Mira.. short for Miracle)and the Momma dog went to another foster home to make room for.... you guessed it, seven more puppies for Christmas.

I have a feeling my angel bear was trying to keep me busy over the holidays.
Aaron is still waiting for word as to when he leaves to go to Iraq. we were supposed to know today, but you know how the military is.

Thank you all for your love and prayers.
Denise and Aaron

1-12-04 UPDATE...
Aaron leaves for Kuwait/ Iraq on Wed, Jan 21. (actually he reports for duty at 29 palms, They won't tell us when he really leaves)
Just wanted to keep you all updated.

Friday, November 21, 2003 0:03 AM CST

Well folks, we're coming up on 3 months without Jessi and it still doesn't seem real... maybe this is all a cruel joke and she'll be home soon, I wish.

Jessi is gone and we cannot bring her back, but I know in my heart I will see her again...

For those of you who did not hear it through the grapevine, The autopsy results are in. Jessi had extensive disease in her marrow, spine, lungs, pancreas, bone, and especially her liver.
Jessi had basically clean scans on Aug 6 (1% marrow involvement only) and within three weeks she was overcome by this horrible monster. Jessi fought with courage that is rare on any battlefield, surrendering only when defeat was imminent.
Jessi died on her terms, she picked her time and she picked her people and she left when she was ready.
Although we controlled her pain as much as possible her relief was obvious when she smiled... five minutes after she died.

Jessi we will always love you, keep sending signs, we will be watching for them. I miss you baby
Momma

Wednesday, September 3, 2003 11:58 PM CDT

Good evening everyone! Jessi's memorial service was this afternoon, and it was absolutely beautiful I would like to thank everyone that came, sent flowers or cards, or was there in spirit. I know many people were unable to make it to the ceremony, but just remember, you were still there.

We would especially like to thank our friend, and officiating pastor, DJ McKnight, a close personal friend who made the service come together very nicely. Kate Carter, of Life Chronicles, thank you for all of your hard work on the memorial video. To the church staff and volunteers, thank you for all of the hard work that you put in both before and after the service. And, last but not least, thank you to all of our friends and family that have been with us through this entire ordeal. We couldn't have made it through any of this without you.

This may be the last entry we make on this website, unless something else arises that merits mention. We have heard from our doctors in both LA and Santa Barbara that Jessi's passing has had a positive impact on some aspects of neuroblastoma research, so that, while only a small consolation, is still a good thing. We still have yet to decide on the time and place of the scattering of Jessi's ashes, but it will be fairly soon.

To everyone who has either "browsed" the site, or have left messages throughout the last two-plus years, thank you for all of the support that you have shown us. Even if we never meet you, you are still a part of our family. Thank you.

Aaron (Daddy) and Denise (Mommy) Sporseen, and Jessi "Bear" Modeen (September 24th, 1995 to August 28th, 2003 and beyond)

Saturday, August 30, 2003 1:02 AM CDT

I am sorry for the short entry this morning, but it was all we could write at the time. Jessi passed at 7:59 pm on August 28th as a result of liver failure. None of the doctors, including many different specialties, has a reason for this, but they have promised that if they find an answer, they will let us know.

She passed peacefully, and after all was said and done, she had a smile on her face. She was not in pain, and for this we are very thankful. The doctors and nursing staff at Cottage Hospital, Children's Hospital, and City of Hope were outstanding throughout our 2 1/2 year ordeal, and we thank them from the bottom of our hearts.

Jessi passed knowing that she was loved and cherished by all that she touched. She was always a happy, loving child, and that is the way that everyone will always remember her.

Memorial services are scheduled for Wednesday, September 3rd at 3pm at the Lompoc Church of the Nazarene on the corner of North and D Streets. All who wish to attend are welcome. As we expect a large number of children to be attending, there will not be a viewing. It will not be a funeral, but a celebration of her life. There is no need to "RSVP".

Jessi's body will be cremated and spread on the ocean, as we truly believe that she would be happiest swimming with her dolphins.

We would request that any memorial donations be made to NANT (New Approaches to Neuroblastoma Therapy). More information on this will be available at the service, as well as on this site as we find out more information.

Thank you, everyone, for all of the support you have given us over the last two and half years. We have appreciated it more than any of you could ever know.

Thank you, and we love you all.

Jessi, Aaron and Denise Sporseen

30 August, 5:20 PM
I wanted to let everyone know that we received a preliminary notification from Dr. Anderson of the pathology report on Jessi's liver. As it stands, they believe that it was, ultimately, the cancer that killed her. It is an evil thing, and spread so rapidly that there was nothing that anyone could have possibly done to save her life. Again, thank you everyone for your support throughout this entire ordeal.
Daddy

Friday, August 29, 2003 8:43 AM CDT

On Thursday, august 28th, 2003 at 7:59 pm Jessi got her angel wings.
She was surrounded with family and friends and knew she was loved.
We will let everyone know about arrangements for the service... it will be in Lompoc no sooner than Wednesday. All who want to come are welcome

Denise and Aaron

Wednesday, August 27, 2003 9:53 AM CDT

On Saturday Jessi was airlifted from Cottage hospital and taken to Childen's Hospital in Los Angeles. It seems that her "Liver problem" has gotten out of control. Jessi's liver has swollen to 4 - 5 times it's intended size and has basically begun to fail.

Jessi still has minimal liver function so there is a glimmer of hope... but she has started a downward trend that is in the words of her Doctor "Ominous". No one knows why this is happening... they are calling it a toxic reaction to the Fenretinide, which neither Aaron, Myself or the research Dr think is accurate.

We're waiting every morning for the doctor's to give us her new lab results, which we keep hoping will start to reverse themselves. They have her taking Acetylcistene, which they give Tylenol overdose patients, Acyclovir, Vitamin E and K and all other kinds of meds, hoping that something works. Guess we'll find out today if they're beginning to help.

On the positive side, Jessi is resting relatively comfortably and just yesterday told me I was her favorite person in the world for bringing her apple juice (in one of her few moments of clarity). She knows who is in the room with her and her attitude still shines through.
We will try to keep this page updated on a regular basis, but no promises are given.
Love to all
Denise and Aaron

Friday, August 22, 2003 11:05 AM CDT

Good morning! Just wanted to drop short note before I start working...well, maybe.

Jessi seems to be having some liver problems, but no one is quite sure why yet. The docs are running all sorts of tests, but there has been no diagnosis as of yet. She's at home at least, but doped to the gills on painkillers. She doesn't have any outright symptoms, but the drugs keep here groggy, so she doesn't get up and around much.

Unfortunately, whatever it is that she has is also messing with her blood counts, which doesn't help much, either. Figure once we know what it is that she has, we'll be able to treat it and move on.

Other than that, not much has been happening. Just life as usual as a cancer-family. Jessi is still enjoying her two new kittens, and all of the animals seem to getting along fairly well.

Like I said, quick. Gotta get running, so I'll talk to y'all later!

Daddy

Saturday, August 16, 2003 3:56 PM CDT

Good afternoon, everyone! Just wanted to make a quick report on what's been going on in the last couple of weeks.

Jessi has completed one week of Fenretinide. 25 horse-pills a day for one out of every three weeks. Not a lot of fun, but it does beat chemotherapy! After the initial argument, she did very well taking them, so it seems to be going well.

Jessi had an "extra" MRI today because of some hip pain she's been having. The radiologist didn't see anything terribly out of the ordinary, except some fluid on her hip joint, so they're going to refer the films to a pediatric radiologist to see what he (Or she) thinks. We'll know for sure on Monday.

We have officially moved into our new home. Escrow closed Thursday, but we started moving in two weeks ago. Jessi is VERY happy to have both a playroom and a bedroom to call hers. Now if I can just get all of the stuff out of MY garage and den, I'll be happy. I keep trying to convince Denise that she has ownership of the kitchen and laundry rooms, but so far she hasn't bought into that idea. Go figure.

All in all, everything is going well. Jessi had a blast at "Cancer Camp" (Camp Dreamstreet in San Juan Capistrano), and is looking forward to going again next year. With school starting soon, and Denise going back to work next month, things are bound to get a little more interesting, but it'll all work out well, I'm sure.

Anyhow, better run along. I just got back from a month-long school in San Diego, and they saddled me with a 24 hour duty right off the bat. Ah, well. Par for the course. Talk to y'all later!

Daddy

Sunday, July 27, 2003 12:33 AM CDT

Well folks... Jessi is off to CAMP!
She left at 7:00 this morning with her Daddy (as he had to return to San Diego for school) and she gets on the bus at 11:30. She will be gone for 7 days.
We got back test results and it seems that Jessi only has active disease in her bone marrow (and that is only 1%)... which means that we are forgoing chemo and going straight to the Fenretinide. (if the chemo were to knock out her remaining 1% we would no longer qualify for the Fenretinide study)

While Jessi and Aaron are gone I am in charge of finishing packing and moving to our new house. Hopefully on Wed... but maybe as late as friday because they will have to send the loan docs to San Diego for Aaron to sign.

Wish me luck, and anyone not busy on Wed... (I did hire movers to do the lifting and transporting)
Love you all
Denise

Thursday, July 17, 2003 9:44 AM CDT

Good morning! Hope everyone's doing well this fine Thursday morning. The sun is shining, the birds are...hiding...at least, I can't hear any from my office. Ah, well. I'm off to San Diego for a month starting this afternoon, leaving Denise and Jessi to fend for themselves. I still feel bad, though, since in the middle of my trip Denise has to move to our new home. She should have plenty of friends to help her out, so hopefully they can make a party of it or something.

Anyhow, Jessi's tests so far have all come out very well. The tumours that had shown on her last PET scan have either cleared up, or are much smaller than they had been before she started the BSO/Melphalan. Congratulations to Dr's Anderson and Reynolds at CHLA...looks like the study works, if you ask me! She still has her bone marrow biopsy on the 23rd, so that will be the last test before she...hopefully!!! goes on the Fenretinide study. Twenty-seven pills a day is a bit much, but if it works, she'll just have to deal with it (For thirty months!)

Well, I'd better get running along. Gotta get ready for my class. Jessi starts her summer camp on the 27th, so she and her mama need to get her all ready for that, along with everything else. Y'all have a good one, and I'll talk to you sometime next month!

Daddy

Tuesday, July 1, 2003 10:36 PM CDT

Hello everyone!
Sorry it's been so long... things have been a bit hectic around here. We are in escrow to buy a new home (well, new to us) which closes July 29th... it seems to me they should change the name from escrow to "Hang you by your toenails for 45 days and at the end we'll tell you if you still qualify"

Anyway... Last night Jessi went to see the Anaheim Angels play. We got to go on a chartered bus with the Santa Barbara Foresters (a minor league baseball team). They have a program for kids with cancer and took along about seven kids. Jessi made friends with one of the players, he sat with her through the game and was very sweet (see photo)

We will return to CHLA on July 23rd to talk to Dr Anderson and review scan results (to be done the week prior) and decide on our next course of treatment. it will either be a round of chemo (Topo/ Cyclo) followed by another stem cell harvest (if the stem cells cooperate) or we may go directly to Fenretinide (oral meds... if we go there then I will explain)

Jessi is going to cancer camp in San Juan Capistrano July 27th - Aug 2nd... if escrow goes well we will be in our new house by the time she gets back.

I will write more later
Denise

Tuesday, June 3, 2003 10:24 AM CDT

Good morning, y'all! I just wanted to stop by and let everyone know what's going on. Sorry for the rather brief note last time, but time is money, or so "they" say...but who the heck are "they"?

Anyhow, Jessi is doing quite well. She had to go to Cottage today for some platelets, but there's nothing new to that. All of her other blood counts are doing very well, so she's at least producing her own without other transfusions.

Since Jessi started losing her hair again, her Mama clipped it very short about a week ago (The same day that Jessi shaved mine). However, last night, she kept complaining that laying on her stubble was uncomfortable, so we broke out the razor and shaving cream and Bic-shaved her little scalp (All except for her bangs, which always seem to make it through chemo). So now, she's got a cute, slick little head instead of a cute, fuzzy little head. Have to get Denise to put some pictures up. It's very adorable. Fortunately, being in the military, I have experience in shaving heads bald, since one little nick would've bled forever (Remember, no platelets).

Jessi will be attending her last day of school, just to wish her classmates well, but she will still be going to summer school, just to catch up on what she missed this last month or so. Not that's she's behind, but it's a number-of-days thing. She's looking forward to it, so it should be good for her. She'll be taking a few days off at the end of the month to go on a little mini-vacation (Don't know where to, but we're going!), and I'm sure she'll miss a couple of weeks next month due to chemo, but other than that...hmm...doesn't sound like she'll be there much, does it?

Okay, better be running along. I'll let everyone know what's happening later on. Until then, sayonara, aloha, ciao, and see ya'!

Daddy

Friday, May 30, 2003 9:52 AM CDT

Good morning! Jessi is home again, hopefully for a little while this time. She's looking and feeling good (With her now-bald little head), so everything seems to be going as expected.

She escaped from Cottage on Wednesday afternoon, and she's been running back and forth between home and the clinic on Vandenberg AFB (Apparently shocking poor, unexpecting Airmen with her cute little "punk" look). Since she switched over to the military way of doing things, they do all of her lab work and whatnot at the clinic. Little longer drive, but better for everyone in the long run.

Other than that, there isn't a whole heck of a lot going on. Since Jessi's bald, she shaved my head last night, which is nothing too new. Keep trying to get Denise to shave her head, too, but she hasn't gone for it yet. Maybe next year for St. Balricks's Day (For those of you looking somewhat dumbfounded, check out "www.stbaldricks.org).

Okay, I'd better get back to work. Y'all have fun, and I'll chat with you later!

Daddy

Saturday, May 24, 2003 8:27 PM CDT

Good evening, everyone. Just a friendly note to let everyone know what's going on. This one will be fairly brief.

Jessi is back at Cottage Hospital, I'm not sure for how long. She spiked a fever when she went down for her platelet infusion and didn't get to leave. She will be down there for nother seven to fourteen days, depending on if we can do the antibiotics at home, or if they're all IV. We'll just have to wait and see, I suppose.

Neither of the kittens made it. They were only two weeks old, very sick, dehydrated and malnourished. Neither of them really stood a chance, but at least Nici, Jessi and Grandma ried.

Okay, on that note, I'll be puttering along. Talk to ya'll later!
Daddy

Wednesday, May 21, 2003 10:19 PM CDT

Good evening! It's eight o'clock and all is well. Jessi is tucked in bed, and so is her mama...kinda wondering what I'm still doing up. Hmmmm....

Jessi obviously got home, right around six o'clock tonight. She's in great spirits (Well, except for the Neupogen injection, but no one likes shots, right?). She's got to go down to Cottage Hospital tomorrow morning for platelets, but she should be right home afterwards. With any luck (I'm keeping my fingers and toes crossed), she won't have any fevers, but with her counts, I have the feeling that she'll be admitted before too long.

On both a sad and a happy note, Denise and Jessi rescued two abandoned kittens from Los Angeles, but one passed away on the drive up. She went peacefully in Grandma's arms, and was already liked well enough that she cried for quite a while afetrwards. The other one was left at the vet overnight. Considering how bad his condition is/was, the vet said his prognosis was "guarded". When they come back up from Santa Barbara tomorrow they'll stop by the vet's and see if he made it through the night.

As for me, I'm scheduled for surgery next week (Hopefully someone will be around to go with me!). It's just LASIK, so it's not that big a deal if I go it alone. Nice thing about the military is I don't have to pay the $5,000 for it that the civilian sector does! Wish me luck.

That's everything that's fit to print. I'll let y'all know how things are going later on. Bye for now!

Daddy

Monday, May 19, 2003 11:19 AM CDT

Good morning! Just wanted to drop a really quick note, just to let everyone know how things are going.

Jessi seems to have made it through the treatment just fine. Her counts have started to drop, and her appetite isn't great, but she's doing well. She may be home before Wednesday...at least it's not the three months like her stem cell transplant!

Her doctor today said that she is well enough to leave, as long as she drinks a good deal more than she has been. Problem is, she never drinks much at all when she's hooked up to the IV. Kind of a Catch 22, I guess. Gotta convince Jessi to pick up the old water bottle on occasion, I guess.

As for the near future, once she gets home, Jessi will be going to Cottage every other day for neurologic checks. Two hours worth of driving for a ten minute appointment. Ah, well. It's only for a week or two. We still don't know what our plan is for further treatment. As alway, it depends on what's available. Her doctors seem to want to get her into the Fenretinide study, but since it's not open yet, it'll be a short wait.

There are two studies open right now, but I don't know if she fits the criteria for either of them. One is another chemo study called PZA (Don't ask me what it means, I can't remember!), and the other is Interleukin-2 and -12, which is basically an immunity trial as far as I can gather. Like I said, I don't know what the eligibility protocol is for either of them, so I'm not going to get my hopes up. Now if they had only kept the original tumour, we could try for a vaccine study. Ah, well.

Anyhow, I'd better get back to work (Okay, surfing the 'net, but what they don't know won't kill me!). Talk to y'all later!

Daddy

(19 May @ 1200)P.S. - Jessi is now hanging out at the Ronald McDonald House until tomorrow or Wednesday, deending on what the doctors think. She was released from he hospital this morning. See ya!

Wednesday, May 14, 2003 10:49 AM CDT

Gee, ain't it just amazing how often I'll write when Jessi's in treatment. Well, I guess no news is good news, right?

Jessi is now beginning day three of the BSO (Finally figured out it's Buthionine Sulfoximine) and all is going well. The only difficulty is that the medication is sulphur-based, and Denise is allergic to sulphur. Go figure. If she snuggles Jessi, she gets a headache, since she's sweating the stuff out, and both Nici and Grandma have what are basically chemical burns from mis-aimed pee. Ah, well. She finishes up with it tomorrow, and the rest should be out of her system by Saturday.

Today also marks the Melphalan infusion. They do blood tests every five to ten minutes for the first hour, and every hour after that for a total of seventeen blood draws. Yes, they will be giving her some blood back to replace what they have stolen after the testing is complete. The reason behind all of the blood tests is simple - they need to quantitatively measure the effects of the Melphalan on her system. Sounds like a good idea to me! It is a clinical trial, after all!

Friday she will be getting her stem cell infusion, and if everything goes beautifully, she will move to the Ronald McDonald house later on in the weekend. That is if there are no fevers and not even a minor complication. Hopefully it'l go smoothly, and they'll be back home next week (Yippee!!!).

Okay, I'm out of stuff to write. Jessi's doing very well, all things considered, and will hopefully continue to do so. I'll drop a line later on and let everyone know how things go today. Talk to y'all later!

Daddy

Tuesday, May 13, 2003 12:25 AM CDT

Good morning! We are on day two of Jessi's treatment, and all is going well so far. Denise has reported that Jessi smells a bit (A side-effect of the BSO), but nothing too major. Hopefully, it continues to go as smoothly.

Since Jessi started the BSO yesterday morning, she will continue until Thursday mornig, then she'll get the Melphalan infusion, which should give her system the shock it needs for a bit of improvement. Jessi's doctor went into a huge, technically detailed description as to how the whole thing worked, of which I can only remember that the BSO displaces a substance in the cells called glutathione, which removes toxic substances before they can affect the cells. This gives the Melphalan a better chance to do it's job.

The dose of Melphalan is about 1/10th of what she would get without the BSO, so hopefully the detrimental effects will be slighter than they have been in the past. She will still be requiring another stem cell infusion in the next week or so, so it still hits pretty hard.

Once this treatment is over, we will be looking at other studies for long-term treatment. Hopefully the Fenretinide study is back up and running by then, because that seems to be what all of her doctors are pushing for for her to get started on. Guess this is another one of those "wait and see" type things.

Unfortunately, due to circumstances beyond my control (Dogs, work, duty, cleaning, etc...) I won't be able to spend a whole lot of time down there with them. Jessi's Grandmother is down with her and Denise, so they've been switching off taking care of the baby at night, which is a big relief for Denise. At least she gets to relax a little bit.

Jessi has been a little uncomfortable since she got down there. Nobody is entirely sure if it's muscular or skeletal, but she's been having some lower back discomfort. She did have a small lesion on one of her lower lumbar vertebra, but they aren't sure if it's causing the problems. If it is, the BSO should work fairly quickly to relieve the problem. If not, heat and rest. She can't take Tylenol because of the BSO, but Morphine's always an option if the pain gets too bad.

Anyhow, now that I've made everyone good and nervous, I'll cut it short. Hope everyone out there in TVland is doing well, and I'll talk to y'all later!

Daddy (AKA Aaron)

Friday, May 9, 2003 2:02 PM CDT

We had our pre-admission meeting with Dr. Anderson yesterday. We will be admitted on Monday for treatment at Children's Los Angeles for two or more weeks, depending on how well Jessi tolerates the treatment. The doc seems to be looking very optimistically on her prognosis at this point, so hopefully he'll be right.

Jessi is still feeling very well. No signs or symptoms that she's ill yet, so we'll be going in to this treatments "healthy". She still weighs over 60 pounds, so hopefully she won't drop below 50 again...she did look pretty sickly at that point.

Dr. Anderson also seems to think that we should be still be able to make the Neuroblastma conference in Chicago at the end of June. I'm really hoping that we can, just so we can have a bit of a break from "real life", even if it's just for a few days.

Just to clear up her lab results that got us here in the first place, it wasn't just her bone marrow that came back positive. Apparently, there were a few different lymph nodes in her abdomen that were positive, as well as one spot on her lower lumbar spine, just one vertebrae. The doctors don't seem too concerned, so if they aren't I am certainly not going to stress over it any more than I already. Plus, if this doesn't completely take care of the current problem, there are a number of new studies coming out that are well thought of, so we'll have some fall-back measures.

Anyhow, I'll keep everyone informed as to what's going on. Talk to y'all later!

Thursday, May 1, 2003 12:17 AM CDT

Well, Jessi should be making it home from the hospital this afternoon after five days of antibiotics for her abscess. She's feeling a lot better, but she is on Valium, Vicodin and Ibuprophen for the neck and back pain and stiffness.

Unfortunately, she wil be spending some time down at Children's Los Angeles in the near future. Her bone marrow showed up positive again. Her CAT scans and everything else came up negative, and her doctor said the bone marrow wasn't heavily involved yet. Fortunately, we keep catching these things early enough that she doesn't feel like hell before her treatments.

We will probably be doing the BSO/Melphalan clinical trial, and possibly the Fenretinide study to see if that will keep the cancer at bay. If she does the first, she will be inpatient for at least two weeks, probably more. The Fenretinide is a tablet somewhat akin to Accutane, so she can do that at home with no real difficulties.

Like I said, she still feels good, all things considered. She has a charity sock-hop to go to this weekend for Life Chronicles. As long as she's not in treatment, we'll be heading to Great America for their annual "Courageous Kids Day" on Mother's Day weekend. Hopefully we can hold the treatment off until after that so that we can go up and have some fun with her Aunt up in San Jose before the treatments begin.

Anyhow, sorry for short note. I'll let everyone know how htings are going later on.

Daddy

Sunday, April 27, 2003 6:53 PM CDT

Well, it had to happen eventually. For the first time since January, Jessi is down at Cottage Hospital. For the last four days, she's had a stiff neck and some muscle swelling in her neck, shoulders and back. We were worried that it was meningitis, but apparently, she has an abcess of some sort in her neck that caused the whole thing. Go figure.

She's been in the hospital since yesterday morning, and she should be out by Tuesday. Unfortunately, I'm trapped at work all through today and tonight, so Denise is alone with her until I can get there tomorrow at some point. They have to run the antibiotics for three days, and they only started today after her CAT Scans showed the abcess.

Other than that, everything is going fine. It looks like I'll be picking orders tomorrow, so at least we'll know where we're going next year. Oddly enough, I'm hoping for Ohio or Maryland...Navy in Ohio, at an Air Force base to boot. Stranger things have happened, I suppose. Jessi will finish out at least this school year, and probably next, before she and Denise follow me out to wherever we end up. I don't much see any purpose in ripping her out of familiar settings with everything going on right now.

Anyhow, just wanted to let everyone know what was going on. Y'all have a good one, and I'll talk to ya' later!

Aaron

Saturday, April 12, 2003 11:43 PM CDT

Okay, I know it's been over a month since I last updated this. I'm sorry, but things have been a little busy. Nothing bad, but busy nonetheless.

Jessi has started T-ball and is enjoying it thoroughly. She sprained her ankle a little while ago, so she has a pinch-runner for her when she goes up to bat, but she still plays outfield and whatnot.

Jessi will be attending summer school this year in a class for kids who are hard of hearing. Mainly, it helps them learn how to deal with a world where everyone hears better than they do. It'll also help her with her "lack of assertiveness", since she hasn't been in school all that much. Should be a good class, combined with the sign language classes she's taking.

Denise and I are still looking around at houses locally. We would qualify, but since some bills fell behind, the interest rates would be a little high until we get some stuff back from the credit reporting agencies later this month. We are also about to start trying to have another child...Lord, two of the litle monsters running around the house. What fun that will be!

For good or bad, I still haven't been called up to run off and play in the sand. There's a part of me that's a little frustrated about it, but I'm sure that it's better that I'm here. I am glad that none of the people I work with currently have shown up on the KIA/MIA lists at CNN. I just feel like I should be there with the rest of them. Ah, well.

Jessi should be going in for scans later this month, or early next month. She seems to be doing fine (Outside of her allergies), so hopefully those will go uneventfully. I'll let everyone know what happens.

Better be running along now. I'll talk to y'all later!

Aaron

20 Apr 2003 - A short addendum. Jessi's friend, Jess, passed away last night at 7:15 from pneumonia, a complication from his own fight with cancer. Jessi was able to call and tell him that she loved him before he passed away, which was good for her. She got all of her crying done before he died. He was a good friend, and we'll all miss him.

Wednesday, March 5, 2003 4:43 PM CST

Well, Jessi had her monthly visit with the doctors at Cottage Hospital today, and everyone is in agreement that she looks healthy and happy. Her weight is a healthy 62 pounds, her counts are good, and all is well. With any luck, it'll stay that way past August first, and it'll be a small record!

There have been no new signs of tumour or cancer growth according to the doctors. Her visit last month to CHLA with Dr. Anderson also confirmed the fact that she is doing remarkably well, so we are very happy about the way things are going.

As for life in general, we're just trucking along. Denise an I are looking into buying a house, just to have somewhere to actually call our own (Plus, we officially ran out of space in our apartment about two years ago). If we do find a place, I'll be running away for a year of duty overseas, just so we don't have to uproot the whole family.

Jessi is still loving school. Her parent-teacher conference yesterday went very well, with nothing but compliments for the child. They obviously haven't seen her at 7:30 at night during the meltdown hours...But seriously, the staff at the school love her, and she's at least at, if not above, the level that she's supposed to be at in all of her classes. All is going as planned for her program of world domination...

Well, I'd better be running along. Just wanted to pass along the good news. Y'all have a good one, and I'll talk to ya' later!

Aaron

Sunday, February 2, 2003 9:12 PM CST

Good evening, everyone! We just got back from a day trucking...well, walking, around Santa Barbara. Went down to the beach and went window-shopping and had dinner. I just couldn't stand being trapped in the house for another day.

All of the tests that Jessi had done last week (CT Scan, Bone Scan, and her bone marrow biopsy) came back clean, so we're still doing quite well. Jessi won't have to do any more testing for another three months, at which point the stress level comes back to bite us in the butts again!

Jessi's loving school (She did not get that from me, thank you very much!). She is, as always, at the top of her class in everything except P.E...didn't expect her to major in that, though. She's still going to American Sign Language class every Wednesday, again, doing very well there. Unfortunately, my work schedule won't allow me to be there any more, but the Navy is currently in a bit of an uproar. Go figure.

Okay, just a really quick note before I crawl back into the laundry. Have a good one, and I'll talk to y'all later!

Aaron

Friday, January 17, 2003 at 07:04 PM (CST)

Hello everyone!
Well, preliminary reports on Jessi's bone marrow are negative... we should have the difinitive answer by next week.
We haven't done the CT or Bone Scan yet, but hopefully the hospital will get on the ball and get them scheduled soon. Jessi continues to do very well, she has gained 6 1/2 lbs (which may not seem like much, but we have been struggling to keep her at 50 lbs.... now she is 56 1/2lbs!!!) Her counts are consistantly at the low normal range (This is a good thing! they haven't been this high since this started)
Even though statistics say this is not over... I am beginning to hope that maybe Jessi is the one who will make it.
Jessi is enjoying first grade, she already has a crush! His name is Jose and he is a little sweetheart, he even had his hair cut almost as short as Jessi's so she wouldn't be the only one. (He also gave her a ring and a hat as a welcome back to school gift... but no, they are not engaged) Tomorrow is T Ball signups, Jessi says she wants to give it a shot... we'll let you know which team she is on.

Aaron hasn't deployed yet (most of his co workers have) but if he does he will be assigned to a fleet hospital (kinda like M*A*S*H) so he won't be under direct fire.
I promise that I will add more as we know more
Love to you all
Denise

Monday, December 30, 2002 at 03:33 PM (CST)

Why, good afternoon! Just wanted to stop working for a minute and say hi!

Jessi, as always, had a wonderful Christmas. We spent the better part of the day hanging out at her grandparent's house, where a good part of the family showed up. The only present that I kinda wish she hadn't gotten (Okay, we got it for her) was a karaoke machine. Ah, well. She seems to enjoy it, so what he heck.

Jessi heads back to school next Monday. She is really looking forward to it. I was a little worried that she might get behind in her schoolwork, but I guess that that is not the case - she's still ahead of most of classmates in a few subjects. She had her last home-school session on Sunday and her teacher has decided she's ready to get moving along. I guess that Denise is going to hang out with her for the first couple of days, then Jessi will be on her own.

Jesi's friend, Robby, is staying in the area for a few dayssince his father is ill. I still haven't figured out if he's a relative of Jessi's, but such is life. He's actually staying with Jessi's sister, Missy, but he'll spend a good deal of time hanging out at our place and playing. He's a really sweet kid, so I think he and Jessi will do just fine while he's here.

I don't know the date yet, but soon after school starts, Jessi will have another set of scans, and a bone marrow biopsy done to see if her cancer is behaving itself. If it's playing nicely, she'll continue with what she's doing (Supplements and quarterly scans). If it has decided not to play wll with others, she'll go staright into CHLA's clinical trials to see if we can't take care of it that way. Y'know, I'm really starting to dislike this kind of stress... On any account, I'll let everyone know what's going on as soon as I have word.

Anyhow, better get back to work. I'll talk to y'all later! Now, where's that magazine...

Daddy

Thursday, December 19, 2002 at 08:11 PM (CST)

Well, the weather outside is frightful...where have I heard that before? I know I'm in California when the news report says to "get where you're going and stay there" because of rain. Come on! I grew up in Seattle. If we didn't do stuff in the rain, nothing would ever get accomplished! A inch an hour! Bah, humbug!

Okay, okay. Enough with bagging on Californians. Things are going really well down here. I went with Jessi and Denise to my first American Sign Language class, and I have now realized that it ain't gonna be easy! Jessi is picking it up at a phenomenal rate, while Denise and I are muddling along. Jessi really enjoys the class, and has taken to carrying around an ASL book with her wherever she goes.

Jessi got back from her Las Vegas trip on Sunday night, with a whole mess of new stuff from Christmas and/or Circus Circus. Her sister, Missy said that she had a blast out there, and Jessi agreed with her.

Jessi "condition" continues to improve. Her counts are good, and she's taking a couple of new supplements to keep her strength and stamina up to par with her contemporaries. She'll be starting school on the 6th of January, and I guess she's already ahead of them in most of her classwork. She did get to go in Yesterday for her class's Christmas party, and all of the children have each decided that they will be her special friend / protector / companion. I think she'll enjoy herself immensely.

I think we're ready for Christmas. I'm pretty sure that if we were any more ready, our house would burst at the seams! We'll be spending most of the holiday over at her grandparent's house (Right down the street, which is good in case it rains...sorry! I promise, no more!). They normally have everyone over on Christmas Eve to open presents and have dinner. I'll be taking the whole week off from the Navy, and hopefully nothing will happen that takes me back to work early...at this point, it is a legitimate worry!

Well, I'd better get running along. Gotta dwell on driving home on the freeway tomorrow...California drivers and all...heheheheh! I'll drop a line if or when something noteworthy happens! Talk to y'all later!

Aaron, aka Daddy

Wednesday, December 11, 2002 at 09:56 AM (CST)

Good morning! Just wanted to throw a really quick blurb out to let everyone know that things are going well. Jessi's counts are all good as of Monday, so she will be going to Las Vegas with her older half-sister (My ex step-stepdaughter...such a twisted web we weave. She's 30). She'll spend Friday through Sunday out there, and she will get to visit her biological father while she's there.

It looks like everything is in the clear with her condition. No one has changed their minds yet, so for right now, she is back to "No evidence of disease", 2nd time (Or NED2). She is feeling really well, and is looking forward to starting school with her classmates. We'll all be starting school either this afternoon or next Wednesday for sign language. Her hearing took another drop in the lower-ranges of the spectrum, but nothing too major. It does, however, light a burner under our butts to get her learning sign.

Hope everyone is ready for Christmas (Only 379 shopping days until the next one!). It looks like Christmas exploded in our living room...I'll be glad when the clock rolls over to the 26th! We only had room for a small, fake, fibre-optic tree, but it's still cute. I think we got everyone taken care of...hopefully!

Okay, I've gotta get back to work. We'll talk to y'all later!

Daddy

P.S. - Jessi had her first American Sign Language class last night and had a blast there. Her mother attended it with her, and Jessi's job is to teach me what she learned in school. My higher-ups at work have agreed to let me out of work early on Wednesdays so that I can attend school with them. Should be fun (And educational at the same time!).

Bye!

Friday, December 06, 2002 at 11:30 AM (CST)

Good morning! Well, it seems that everybody's opinions are in, and the general concensus is that Jessi is again clear of disease. The doctors down at CHLA haven't seen the scans yet, but according to the reports that they have seen, they seem to agree with the doctors up this way.

We're looking into another clinical trial, this time a monoclonal antibody trial out in the midwest. I doubt that we'll be eligible unless Jessi comes back out of remission, but it seems just too good to be true, if you know what I mean. It just feels like we should be doing something, and not just sitting on our laurels waiting for something to happen!

Jessi should be rejoining her classmates at school sometime after the first of the year, as long as her blood counts, health, and energy level all cooperate. We'll do more scans and another bone marrow biopsy in January, then we'll know for sure that she can head off to school again. I don't see any problems with it - she's certainly not behind in any of her subjects (She's ahead in most of them), so it'll just be a social readjustment.

Anyhow, I think that's about everything. Drop a line sometime, and I'll talk to y'all later!

Aaron

Wednesday, December 04, 2002 at 11:03 PM (CST)

Good evening! Bear with me - I'm writing minus a middle finger, so typing is a little tough, here.

We got the results back from Jessi's PET scan that she had done on Monday. They couldn't find anything, according to the radiologist. I guess there are questions about her GCSF injections and her bone marrow on the test, but from what we understand, there is no disease visible on what is probably the most sensitive scan out there.

Jessi, of course, continues to do well. She had to get blood and platelets yesterday. Actually, because the wrong tubing had been placed on the platelets, she got two infusions of them (Blood has a filter in the line that removes the platelets. Guess which tubing was on it). Fortunately, we have a sense of humour about it.

Jessi's having a blast with her new American Eskimo, Keeja. She's a little cutie, and seems to get along with everyone (Well, except the cats, who aren't thrilled about being chased around the house by a cotton ball with legs). I'll try to get pictures of the two of them up as soon as possible. Much to Osiris' chagrin, Keeja has a crush on him. Funny part is is he is a VERY neutered cocker/cattledog mix who is a true doofus, and doesn't know what to make of the extra attention.

Anyhow, just thought I'd let everyone know. I'll drop another line when we know more. Talk to y'all later!

Aaron

Wednesday, November 27, 2002 at 11:56 AM (CST)

Good morning! Just wanted to drop a quick note to let y'all know that we're still alive and kicking. Jessi is doing really well, all things considered. Her Aunt, Uncle, and cousins are all in town for Thanksgiving, so she's spending a lot of time with them.

Little Keeja arrived yesterday. I should know - I went to pick her up through L.A. rush hour traffic at the airport! She's a little cutie. Unfortunately, she has somewhat bonded with me after the four hour car ride coming home, but we're working on that. All things being equal, she's adjusting a lot quicker than I thought she would. She's a little aloof towards the dogs and cats, but she doesn't seem to be too afraid of any of us.

Anyhow, we're still awaiting Jessi's PET scan on Monday. At least we'll know what's going on! I'll let ya'll know what's going on as soon as we know. I'll talk to everyone later!

Daddy

Wednesday, November 27, 2002 at 11:56 AM (CST)

Good morning! Just wanted to drop a quick note to let y'all know that we're still alive and kicking. Jessi is doing really well, all things considered. Her Aunt, Uncle, and cousins are all in town for Thanksgiving, so she's spending a lot of time with them.

Little Keeja arrived yesterday. I should know - I went to pick her up through L.A. rush hour traffic at the airport! She's a little cutie. Unfortunately, she has somewhat bonded with me after the four hour car ride coming home, but we're working on that. All things being equal, she's adjusting a lot quicker than I thought she would. She's a little aloof towards the dogs and cats, but she doesn't seem to be too afraid of any of us.

Anyhow, we're still awaiting Jessi's PET scan on Monday. At least we'll know what's going on! I'll let ya'll know what's going on as soon as we know. I'll talk to everyone later!

Daddy

Thursday, November 21, 2002 at 08:59 AM (CST)

Morning, y'all! Just wanted to drop a quick note to let ya' know how we're doing. Jessi's fairing really well, considering everything. She's a little tired and crnky, but I'm sure that her counts are all really low. I think the fact that she can't get out of the house to do too much doesn't help, either.

Jessi's new dog should be arriving on Tuesday. There were some questions regarding her diet, and fence-climbing abilities, but all of that got smoothed out. She sounds like just about the perfect dog for Jessi - couch potato who loves to snuggle. Jessi had been sleeping with my dog, Isis, until dear Isis ate six of her stuffed animals in one night. It'll also be a good chance to teach her about the proper care of animals, since little Keeja loves to be pampered.

Jessi's PET (Positron Emission Tomography) scan is scheduled for Monday the 2nd. Basicaly, it'll show any active cancer activity down to the size of a pinhead. We're hoping to find something small, but enough to get her on to the trials that we want to get her in to. The other obstacle is going to be working with the doctors in charge of the studies in order to get around the MIBG-negative problem, but we'll jump through those hoops when we get to them.

Anyhow, Jessi is going to be on the news again, this time with the pet-therapy dogs at Cottge. Hopefully we'll be able to get a good copy of the segment, but I can't make any promises on that one. We're actually thinking about getting Keeja her "Good Citizenship" certificate and maybe trying to do some therapy work with her, too, and maybe some agility trials, but here's a lot that goes into both, so it'll just be an issue of having the time to train her to do it.

Okay, I'd better be running along. We'll talk to y'all later!

Daddy

Tuesday, November 19, 2002 at 02:56 PM (CST)

Howdy, y'all! Happy almost-Turkey Day! Things are going well around here. Jessi should be home from the hospital tonight. The week has gone pretty smoothly, as usual, so it I don't see any delays. Now if we can just keep her out of the hospital once she gets home...cross your fingers for no mucocitis or fevers!

There has been a delay in getting her new dog - I guess she was attacked by another dog when she got home from the Vet last Friday, so the earliest we'll be seeing her is next Tuesday. We need to talk to her current family a little more in-depth as well, as it seems there are some behavioral and medical problems that we might not have been too clear on. We'll just have to wait and see, I guess.

Jessi has a new test scheduled for two weeks from now, for a PET scan. They want to see if they can't find anything on that, since it's a little more accurate than a normal CT scan. We're still not entirely sure what our follow-up treatments are going to be, since none of the doctors are used to having kids go NED2 so quickly, but I'm sure that by the time we're done with Neupogen this time around we'll have a good schedule down.

Anyhow, I'd better get running along. Talk to y'all later!

Daddy

Thursday, November 14, 2002 at 03:35 PM (CST)

Hello all!
Tonite Jessi and I are checking into "Camp Cottage" (also known as Cottage hospital) for a five day stay for what we hope will be the last time! It looks like Jessi will be getting her dog on Wednesday... her name is Keeja and she is around one year old (I'm really not sure how old she is... I never asked)
I will be driving to LAX to pick her up while Jessi waits at Grandma's (anyone feel like taking a drive with me??)
Jessi is already talking about doing agility with LuLu, Blitzen and Penny (Three of our hospital's therapy dogs)... I will have to look into the specifics.
I will keep you all informed as things progress...
Love
Denise

Friday, November 08, 2002 at 10:15 PM (CST)

Howdy, y'all! Just wanted to drop a line and let everyone know what's going on. We saw Dr. Anderson and his compadres on Wednesday, and they were unable to find anything noticeable on Jessi's scans. Nothing new, since no one else has been able to, either.

Unfortunately, due to Jessi's "unique" position (Relapsed, but back in NED), we are inelligible for any of the studies that are open right now. Apparently, since there's nothing there, they can't measure how well anything would work, so it would actually damage the results of any studies that Jessi would be in. Go figure - the stuff worked too well for our purposes. Ah, well.

For the time being, unless Jessi's cancer decides to come back again, we're going to do one more round of the Topotecan / Cyclophosphamide combination. Once #4 is over, we will have hit the maximum usefullness of those two drugs. After that, we'll be going on a maintenance program, which has yet to be announced. I don't know exactly what is planned, but hopefully it'll work long enough to have Jessi eligible for either a new treatment regimen or another clinical trial. The other possibility is that Jessi's cancer won't come back and we won't need to do anything more. Keep your fingers crossed!

During her maintenance regimen, Dr. Anderson has actually brought up the possibility of acupuncture being of some benefit. Unfortunately, this is not a "medically necessary" treatment, and therefore not covered by insurance. Not too surprising. If anyone knows a good acupuncturist who would offer a "little people's" discount let us know!

On another happy note, Jessi's school district had her educational assesment today. I don't know how they got anything done at the schools with everybody being there, but I guess things carried on pretty well. Everybody has decided that Jessi is absolutely brilliant. The only real issue is getting a tutor for Jessi (And us!)to learn sign language. It's more of a preventive measure, in case we have to do more of the platinum-based drugs, or the ones that she's already had come back to haunt us some more. The school district will have a teacher come in to her school to work with her, but it doesn't do a whole lot of good if we don't know how to sign, too!

Anyhow, that's all the news that's fit to print for now. I'll write more when we know more! See y'all later!

Daddy

Sunday, November 03, 2002 at 10:37 PM (CST)

Hello everyone...
Well, we got home from the hospital just in time for Jessi to go trick-or-treating on Thursday, She was a beautiful pink unicorn... (I will post pics soon) We had a great time.
Wednesday is our big appt in LA with Dr Anderson, we will be hand carrying our scan films and reports... they were sent twice, but Dr Anderson hasn't gotten them yet. What we were told is that Jessi is CR2, complete remission second time. Now this may seem twisted, but we are hoping that Dr A can find SOMETHING that looks like cancer. It seems that as long as Jessi has no evidence of disease she does not qualify for any studies currently open. In order to do a study to find if a treatment works the child has to have measurable disease, that way they can measure the effectiveness of said treatment(makes sense... but sucks for us).
No one actually believes that the monster is gone, that would be too easy... and Neuroblastoma is not an easy enemy to fight. More likely there is something in there lurking and waiting for a chance to come back. We need to find something that will 'slay the beast'... and we don't want to have to wait for it to return in order to continue the battle.
I am hoping that when the Neuroblastoma specialist (Dr A) looks at the scans he can close one eye, squint with the other and see something that could be construed as cancer for the sake of eligibility for at least Fenretinide.
Keep your fingers crossed, and keep us in your prayers (who/ whatever you pray to)
Love, Denise

Sunday, October 27, 2002 at 09:11 AM (CST)

Well, just when you thought everything was going according to plan, things have just got to go wrong. Jessi's back in the hospital (since 1100 a.m. yesterday) for mucocitis. We had it pretty well under control with Tylenol and Lortab (Liquid Vicodin) Thursday and Friday, but it got too bad to deal with yesterday morning, so they admitted her. She's on a constant Morphine drip, and it's got it down to a reasonably tolerable level.

On top of that, she started spiking fevers last night, so she won't be able to leave the hospital until she has been fever-free for at least 48 hours. Not such a bad thing, since I've got the car...oops.

The only difficulty is that Jessi takes her Playstation with her every time she's admitted, and when you're on Morphine, the old hand-eye coordination goes straight out the window. Yeah, she's a little frustrated about it, but at least she's not screaming and crying from the pain.

Oh, we have been teasing Jessi relentlessly about the Haunted Trail we visited on Friday night. She did really well...the first year she went. This year, she freaked. I suppose that's the sign of a good haunted house. The "characters" all were very good with the kids; no contact, they were being friendly, but Jessi still wigged out a bit. Ah, well. At least it wasn't "Knott's 'Scary' Farm, where the characters have no issues with grabbing you and generally being vicious.

Okay, that's about all the news that's fit (or not fit) to print. We're still waiting on word from CHLA. I won't hold it against them, because Dr. Anderson said he was gonna try to fight Jessi's way into at least one of the open clinical trials. Anyhow, I'll let y'all know when I know something. Talk to everyone later!

Aaron, a.k.a. Daddy

Friday, October 25, 2002 at 03:32 PM (CDT)

Good afternoon! Just felt like dropping a quick note in in-between treatments. Kind of a gloomy day - raining and chilly, but that's just one of the hazards of living on the Central Coast, I guess.

Jesi's still doing really well, although her counts are now down to a point that she can't venture out too much. If the weather cooperates, we'll take her to Vandenburg AFB's "Haunted Trail" this evening, but that's an outdoor event, so that would be fine for her. She enjoyed it last year, and that was right after she got back from transplant.

We haven't heard back from CHLA about what our next step is going ot be, but I have the feeling that there is a lot of discussion (er, arguing) about what that's going to be. Like Denise wrote earlier, we've been effectively excluded from at least two of the clinical trials because of how well Jesi's doing with this treatment regimen, but we're stil exploring all of the other avenues.

One other minor note - for the first time in over a year, we have a mouth sore, except that it's in her throat. Fortunately, Tylenol takes care of it pretty easily, so it's not that much of a worry. As soon as her counts come up, it should go away. Kinda forgot that she got them, it's been so long!

Anyhow, I'd better get back to work. Once we know what our next steps are going to be, I'l let y'all know. Talk to y'all later!

Aaron

Friday, October 18, 2002 at 02:06 PM (CDT)

Hello all,
Here we are, day two of chemo... we have decided to continue with the Topotecan/Cyclophosphomide coctail. We will go back to CHLA in about three weeks to see Dr Anderson again and plan our next step. We had planned on doing the BSO/Melphalan study next, Unfortunately Jessi no longer seems to qualify. To participate in this study Jessi would need to have a measurable amount of disease so that response can be measured... Jessi no longer has measurable disease, as a matter of fact, Jessi no longer has any evidence of disease.
We had also planned on doing a Fenretinide study following BSO/ Melphalan, this is also no longer a sure thing for the same reasons. Dr Anderson will be petitioning for permission to give Jessi Fenretinide anyway, we shall see what happens.
I guess to sum this all up: Jessi has responded to treatment better than we could have hoped, which is obviously a good thing... but the downside is that it limits our options for "maintainance" treatments (treatments meant to support remission and prevent relapse).
We will be looking into Gene therapy treatments, such as Dr Jensen's T-Cell trial at City of Hope, and I believe there is one available at CHLA.
Thank you all for your thoughts and prayers,
Love
Denise and Jessi

Wednesday, October 16, 2002 at 09:06 AM (CDT)

God morning! Seven o'clock and all is well! We got the official results of Jessi's bone marrow biopsy, which was read as 1:1,000,000. Basically, it means that for every million bone marrow cells, that was one tumour cell. Okay, even simpler, it means clear sailing. The Topotecan/Cyclophosphamide combination seems to have exceeded the doctor's expectations.

Which means, of course, that we may be trying something else tomorrow when Jessi starts round 3 of chemo. They want to keep the cancer guessing, so we may switch to Irinotecan instead of Topotecan. The "protocol" calls for the Irinotecan with Carboplatin, which is one of the chemicals that trashed Jessi's hearing. She has already said that she doesn't want it, and we are backing her on it. We've already asked about other combinations, so we'll find out tonite when Jessi goes in (At 9 o'clock no less!) to start hydrating herself for the chemo tomorrow.

On a happier note, Jessi was in the paper again. If you really want to read the article (Which originally featured a photo of Jessi and I on the front page), you can go to "www.santamariatimes.com", and look up "Jessi swims with dolphins" in the archives. At least this time we had people there to censor our comments to the reporter, so no more embarrassing remarks in this article.

Okay, I'd better get to work. Never a dull day....no matter how hard I try to find one. Talk to y'all later!

Daddy

Friday, October 11, 2002 at 11:03 PM (CDT)

Howdy, y'all! We've finaly recovered from our little jaunt to Florida, and all seems to be going well. Jessi's feeling great, and the adults are no longer completely wasted.

We've had Jessi's tests (CT, bone scan, and bone marrow biopsies) done on Wednesday and Thursday respectively. There was a little confusion initially on her CT scans, as the doctor told us they were identical to the ones done in July. Well, she was comparing them to the ones done July of last year when Jessi was NED. THEY WERE CLEAR. Her bone marrow biopsy shows preliminarily as clear, also, but we have to wait for the official results to come back before we can say it with confidence. As it stands, though, things are going very well.

Jessi showed just how much of a little celebrity she is again today. A crew of senior enlisted and officers from the PCU (Pre-Commissioning Unit - a ship that is still being built) Ronald Reagan, which is scheduled to float as our nation's next super-carrier in 2004, came to visit Cottage Hospital to check things out. They are going to sponsor their "Caps for Kids" program, where celebrities sign hats and caps for the critically ill children.

Anyhow, instead of simply being introduced and shown off, as the plan originally went, Jessi stepped up to the helm and took over the role of tour guide. Everybody was very impressed with her, especially since daddy is active duty Navy, too. She had a blast doing that. Any time she can, she basks in the spotlight. I wonder how'd she do as a little Neuroblastoma poster child...

She should also be in the Santa Maria Times either this weekend or soon thereafter. A reporter and photographer came to interview her this afternoon regarding her Make-a-Wish trip, drumming up public knowledge and whatnot of the program. We were a little worried about her getting shy in front of the camera, but after a little bit, she warmed up and the floodgates opened. It should be a good article, and hopefully it'll open a few wallets for the Wish guys.

Oh, as a sidenote, if anybody knows anybody in the Corvette Club of Santa Maria, tell thems thanks for us, as it was them that sponsored Jessi's and another little girl's Wish trips, both to Discovery Cove. Anybody that generous deserves a good, hearty handshake, if not a hug!

Anyhow, I'd better get running along before I say something dumb. I'll write more when we know more. Until then, bye!

Daddy

Sunday, October 06, 2002 at 10:22 PM (CDT)

Well, we have returned safe and sound from a wonderful, but very long, week in Florida. Everyone had a great time, but I'm pretty sure that the adults were all very glad to be home.

Everything about the trip went very well. Our accomodations at Give Kids the World were incredible. I can't say enough about the place, but I'll try to keep it fairly short. For anyone that hasn't heard of GKTW, it's a resort built entirely for children, either on their Wish trips, or whichever organisation got them there. They range from kids with cancer to scleroderma to spina bifida. Anything you can imagine. At GKTW, though, all that matters is that they're kids. It is run entirely on donations (Hint, hint) and volunteer work (There are maybe 20 actual employees from what I saw, to take care of 96 families a week that stay there - guess how much work the volunteers do!).

Everything about the place is built around one thing - making the kids smile as much as they can. The restaurant, which serves breakfast and dinner, is the Gingerbread house. All of the food is donated by Perkin's Restaurants. According to the volunteers, if you ever go to a Perkin's, ask if they have a picture of the Gingerbread House, and 99% of them will. The ice cream parlor is shaped like a giant sundae, and so on and so on. Take a look at "www.gktw.org" for a look-see.

Anyhow, we spent Monday lounging around the pool and spending the afternoon at Jessi's Grandparent's home for her late-birthday party. After we got back, we spent the evening at the pool for the Pool Party that they have every Monday - dinner, dancing, and entertainment. The star of the show for our Monday party was a Florida Panther that had been hand-reared by it's handlers.

Tuesday we spent at Discovery Cove. The place was simply awesome. Started off when they comped Grandma's ticket and just kept rolling from there, The highlight of the day was our 90 minutes with Roxy the Atlantic Bottlenose Dolphin. I doubt that Jessi will ever forget the experience. We spent a good deal of the day floating around the freshwater "Rainforest River", and checking out the rays (All sorts of them) in the (Unheated!!!!) saltwater ray lagoon. Defintitely the high point of the trip! Again, check out "www.discoverycove.org" to check it out a little better.

Wednesday we spent at Disneyworld. Unfortunately, the castmembers weren't quite up to par with our expectations, and we left with a bit of a sour taste in our mouths. It was still fun, but just not as great as we had expected.

Thursday, on the other hand, we spent at Universal Studios and Islands of Adventure (Different parts of the same park). The staff there bent over backwards for us, and made it an outstanding day for everyone. Since it was well over 95 degrees, we spent a lot of time on the water rides. Note to adults - take the "Fire" dragon of the Dueling Dragons roller coaster - by far the better of the two. Trust me.

When we got home, it was Christmas in October. Yes, snow (Okay, foam, but who cares?) and Santa Claus and gifts for all of the kids.

The nicest thing of the two parks is that we didn't have to wait in any lines. Not that it would have been a major ordeal, since the longest line was 10 minutes, but it made things easier on everyone.

Okay, Friday was spent relaxing at the pool and shopping at Disney World's mall. And I thought Vegas was bad! I think we dropped and easy $500 in there!!! If a place has a shop dedicated to pins, is that a bad thing?

Saturday, we trolled around GKTW after we checked out. We saw where they put Jessi's star on the ceiling of the Castle of Miracles (I'm telling ya', check out the website!!!). Then it was off to the airport where, after several strong drinks and five and a half hours on the airplane, we finally made it home. Home sweet home. No more walking!

Okay, the rest of this week is going to be dedicated to two things - relaxing and Jessi's tests. We have scans on Wednesday, and bone marrow biopsies scheduled for Thursday. Yes, we're a little anxious, but I have the feeling that everything will be fine. If all goes as planned, we will start round three of chemo on Friday or Monday. Cross your fingers, say your prayers to whichever god you worship (Yahweh, Buddha, Odin, doesn't matter to me!), and wish Jessi the best.

Okay, now that I've tried to offend everyone possible, I'll be running along. This is normally where the editor wants to know what I've written, but she's asleep already, so it was all my show! Anyhow, talk to ya'll later! Let you know what happens once we get the results of the tests.

Daddy

Saturday, September 28, 2002 at 08:55 PM (CDT)

Well, the countdown is on. Nine hours until the limo comes and gets us. Eventually I'll even look at the itinerary and figure out when we arrive in Florida. Mebbe it'll even be a surprise! I'm pretty sure that we managed to fit the kitchen sink into our bags (At least, it feels like it!).

Jessi's feeling really good right now. A bit tired, but she was a bit excited about picking up her cousin, Kirsten, this morning and didn't get a whole lot of sleep last night. She's in a Bendryl-induced sleep tonight so she won't be a major terror tomorrow. It's quite a bit of time in the plane for a seven-year-old!

Anyhow, Jessi's counts are all up as of yesterday, and her scans/Bone marrow/etc tests are all scheduled for the 9th of October. As long as things are looking up, we'll continue another couple of rounds of the Cyclophosphamide/Topotecan cocktail, then head down for the BSO/Melphalan trial. If things haven't changed, or they've gotten worse, then we'll go for the trials immediately. The way things have been going, I don't think we'll be having any problems.

Well, better run. Gotta be up at 0330 to get ready in the morning. Keep your fingers crossed - Kissimmee is scheduled for "Scattered thundershowers" on Tuesday, when we're supposed to be at Discovery Cove! Talk to y'all later!

Daddy

Wednesday, September 25, 2002 at 03:27 PM (CDT)

Hey, everyone! Just got back from a couple of short days at Cottage - Jessi had a fever of 101.5, which is exactly the number that gets her admitted. Of course, by the time we got there, it was down to normal, but that's just par for the course.

We had a whole bunch of visitors yesterday for her 7th birthday. The barbecue that we had planned has been postponed until after we get back from Florida, but she had a good time, even though we were in the hospital. She got all sorts of good things, and loved seeing everyone.

Anyhow, we leave at 0430 on Sunday morning for our flight to Orlando. We have to drive about four or five hours to pick Jessi's cousin Kirsten up. Since Jessi's an only child, she gets to take her cousin. Grandma's going, too, so we have a built in babysitter (heheheheh!!!). We get back sometime on the following Saturday night, so we definitely have a full week planned out!

Okay, just a quick update. Thanks to everyone that made it down to the hospital, and we'll see y'all later!

Daddy

Monday, September 16, 2002 at 04:38 PM (CDT)

Well, Jessi's headed home for a while. She's done with round two of her Cyclophosphamide / Topotecan, and seems to have tolerated it very well. She's been taking care of all of her friends today, now that's she's not hooked to anything. She went down and read some Shel Silverstien to our friend Michelle's former boss (He bought her the book), and brought some cheer into her friend Jess's room. She's pretty good at it, too!

I can't remember if I mentioned this before, but we had Jessi tested for her reading ability a little while back. She seems to be a little farther along than we had originally suspected. Her sight reading (Actually knowing how to read and pronounce the words) is at an 8th to 9th grade level, and her comprehension is running right around a 5th grade level. The teacher was very disappointed with her math (Only 1st grade...gee, she's in what, 1st grade?), but everyone has their aptitudes, right? We have a home-bound teacher who will be visting several times a week to keep up with all of the necessary stuff, so at Jessi'll be able to keep up with the rest of her class.

Anyhow, we'll be headed for (Keep your fingers crossed!!!) Florida on the 28th, so Jessi's VERY excited about that. That alone will probably be enough to keep her out of the hospital! It should be a really good time. It'll be Jessi, myself, Nici, Jessi's cousin Kirsten and her Grandma. We're all looking forward to seeing how the dolphins react to her, and how well she enjoys snorkeling. I'll probably have to play tug boat around the lagoon, but that's okay with me.

Other than that, there's not a whole lot going on. Everyone's happy to be coming home. I'll talk to y'all the next time something newsworthy occurs! Bye for now!

Daddy

Thursday, September 12, 2002 at 08:56 AM (CDT)

Morning, everyone! Just a quick little update before my day starts. We got set back by one more day on her chemo. Instead of starting yesterday, she starts at 0800 this morning. Her ANC (Absolute Neutrophil Count) was just a hair below what they wanted it at, and there wasn't a chemo nurse on board last night, so they just rescheduled it by about 12 hours or so.

Jessi is, as always, in good spirits. Go figure...a six (Almost seven) year old who enjoys going to the hospital. Ah, well. She was already awake this morning before 0600 when I stopped by on my way to work, and smiling like the little monkey that she is.

It looks like our Make a Wish trip will be starting the weekend of the 8th of October. We stopped by the Santa Barbara office and got the arrangements under way, so hopefully everything will work as planned. I didn't realise just how many reservations had to be changed - I'm just glad that someone else is taking care of it for once, so the stress isn't laying on our shoulders.

For anyone that's interested, the annual American Cancer Society "Relay for Life" is going on the weekend of the 21st (The weekend after next). Check out "www.cancer.org" for all of the details. Given that Jessi's feeling up to it, we'll be doing it down at Oxnard High School. They start off with a ceremonial "Survivor's Lap" for al of the former and current cancer victims, so we'll be doing that at 1000 on Saturday, hopefully!

Anyhow, just thought I'd put out a quick update. Talk to y'al later!

P.S. - As of now (12 September), we're going to Florida on the 28th of September instead of the beginning of October. Seems like every time I turn around, something's changing! Jessi's still enjoying herself at the hospital, and a special "Thank you!" to Becky for all the fun stuff! Talk to y'all later!

Daddy

Monday, September 09, 2002 at 11:58 PM (CDT)

Hello everyone!
Jessi's counts were not quite good enough to start chemo tomorrow (Tuesday) however we will be starting Wednesday.
As soon as Jessi starts her chemo I will be calling the Make-A-Wish people to reschedule our trip... which brings up another interesting point, Jessi is going to be home for her birthday. I am going to do the math and consult my magic 8-ball and try to plan a birthday party that will not have to be cancelled due to Neutropenia or hospital stays. Jessi wants to have a costume party, so all of you who live close enough to attend (And yes you are all invited) start preparing a costume now, because I don't think we will have a whole lot of notice!
I will update again once we get into the hospital... which will be Wed thru Sun for those of you who want to visit.
Love you all...
Denise

Thursday, September 05, 2002 at 05:21 PM (CDT)

Well, you know what they say about the best laid plans.... Jessi's platelets still aren't high enough to start chemo, we will do new labs on Monday to see if we can start chemo on Tuesday. Keep your fingers crossed!
Our Make - A - Wish trip will be postponed at least a week... we need to wait until she starts chemo then do the math to see when her counts should be stable (ish). Then we can plan the days we will go.

I will write more later...
Denise

Tuesday, September 03, 2002 at 09:51 AM (CDT)

Gee, and here we were thinking that Jessi would be back in the hospital this week for round two of chemo. How sadly mistaken we were. Her platelets were too low to start today (They need to be 75, and hers were only 52), so it's been pushed back by at least four days (She MAY be able to start Friday, but more likely next Monday).

This, of course, starts the old domino effect in motion. Because she needs to have at least decent counts before we can go to Florida, her Make A Wish trip is going to, hopefully, be pushed back by a week, also. I said hopefully, since we don't know if can be arranged that quickly. With any luck, we'll be leaving the 28th instead of the 21st, but I'll just have to wait until Denise speaks with the Wish people about it. I'll keep everyone updated.

Jessi had an outstanding weekend. She spent Sunday at a friend's birthday party and had a blast there. She doesn't get out too terribly often, so being around kids her age was a very good thing. She spent most of Labor Day swimming at a friends pool at a barbecue party, which was also very fun! Jessi loves swimming, but we haven't been able to do a whole lot of it with the way things have been. Right now, the more she can be in the water, the better, since she's got to have the confidence to get in the water with the dolphins.

Anyhow, that's whats going on right now. Jessi is doing really well, but she's just taking her own sweet time building her platelets back up (All of her other counts are "good" (For her, at least!). I'll let y'all know what's going on later in the week!

Daddy

Tuesday, August 27, 2002 at 04:14 PM (CDT)

Well, we're finally back in business. Jessi's white count is up to 3.4, but her platelets took a hammering from the Neupogen (To help white cell production) and the chemo. It's actually a good sign for the counts to drop...it generally means that the chemo is working well, but the after-effects are kind of a bear, namely the betwee-chemo hospital visits.

We're getting ready for Jessi's next round of chemo, which starts next Monday (On a holiday, for Pete's sakes!). As long as her white count keeps going up, we should stay on schedule. Her ANC (Absolute Neutrophil Count, another measure of white cells) has to be above 1,500 to start, and it was at 1,440 today, so it shouldn't be a problem. It'll be the same stuff - Cyclophosphamide and Topotecan. It didn't make her sick the first time, but with Jessi, you never know. Apparently, she had a painless mouth sore, but if that's the worst of it, we'll take it.

After we get back from Florida at the end of September, Jessi will have all of her scans done again, to show if the chemo is working or not. If it is, we'll do one or two more rounds of chemo at Cottage Hospital, then move down to Children's LA for the BSO/Melphalan treatments. From what we understand, it's kind of like a mini-stem-cell rescue. Dr. Anderson seems to think that it'll be a week inpatient and a week outpatient for the entire treatment, then we'll be off to wherever for her immuno-treatments (Vaccine, T-cell, 3F8 or other). We shall just have to wait and see, I guess (Hope it's two weeks, instead of three months like the last time!).

If the current treatments aren't working, and the disease hasn't changed ot it's gotten worse, then we'll probably shift gears and head down sooner for the BSO/Melphalan treatment to see if we can't work on it that way. We have had Melphalan in the past (For her stem-cell transplant), so hopefully it'll work again. The BSO is basically there to supercharge the Melphalan, so the doses of it can't be lower and less destructive.

On a more upbeat note, Jessi got to meet her school class last week, and she'll probably spend a few hours with them tomorrow or Thursday. We don't have to worry about the learning aspect of things nearly as much as the social, but Denise is going over to the school with her tomorrow to download all of the "advanced reader" tests for her to do on the computer while she's trapped in the hospital. She thoroughly loves everything about school (She did not get this from me!), and she doesn't like being away for any length of time, but it's just too easy for her to catch something...er, anything while she's going through treatments.

Okay, I'll let everyone go. Jessi is doing great, so so far, so good. We're just keeping all of our fingers crossed and hoping that all goes as planned. I'll talk to y'all later!

Thursday, August 22, 2002 at 09:19 AM (CDT)

Well, we should have known it would happen. Jessi had a fever last night - not too bad, only 101.5 when she left, but enough to put her in the hospital for a couple of days, at least. Hopefully she'll be home Saturday (She has to be fever-free for 48 hours), but more than likely, she'll be there for the better part of a week for IV antibiotics and whatnot.

One of the other reasons that she's there is her counts - we've dropped down to a white-blood-cell count of 0.7, which is way down still. Her platelet count, which should be 250-300 is down to a whopping 17, so she'll be getting a platelet infusion today. Nothing unexpected, but news nonetheless.

On a good note, Jessi got to meet her 1st grade class yesterday. She went in for a couple of hours and hung out, but she won't be going back for a while. I couldn't tell you how long, but probably not until after we get back from Florida at the least. It's a bummer, because Jessi loves school (She did NOT get that from me! I did everything that I could to stay away from school), but it's what will hopefully keep her healthy!


Daddy

P.S. - Jessi was back in the newspaper in Lompoc and Santa Maria Tuesday and Wednesday. The one in the Lompoc paper wasn't too terribly flattering, but what can a guy do?

Holy Smokes Batman..
News Flash!!! There wasn't enough excitement in Peds today, sooo Nici decided to make some!! We had a Fire alarm and some very excited security men. Quite the excitement. Denise has been banned from making popcorn. seems KettleCorn has a quick "pop" time. all would have been okay but, being precautious, and a Fireman's daughter, Nici put water on the scorched bag..... and BINGO....instant smoke. Security reacts rather quickly we noted.
Jessi is reading with teeth brushed and face clean ready for bed. Jessi was quite the hit today, with her "cookie stand". She made decorated cookies for all the nurses, her Doctor, and her neighbor patients. She is very artistic. A wonderful cookie decorator.
Keeping Jessi busy and happy is a round the clock job, but Nici is doing a fantastic job.
Thanks to all of you..... friends old and new...for your thoughts and prayers.We are very grateful. Grandma

Tuesday, August 20, 2002 at 04:34 PM (CDT)

Good afternoon! It's been four days since we got out of the hospital, and the chemo has taken hold. Jessi had her blood counts done today, and her white count is down to 0.8. Yes, this is quite low, especially with the Neupogne injections that she's been enduring. Nici's going to speak with Dr. Greenfield to see if there's anything that we should worry about.

On the other hand, other than being a bit tired, Jessi's feeling fine. Her hair is a really cool shade of purple (With silver highlights). Figger if she's going to lose it soon, why not have some fun with it before hand? Jessi got to help shave my head last Saturday, as I promised she could, so we should be a pretty even match when hers comes out.

As for body art, some examples are up on the photo page. Quite the little artiste, ain't she? Now, she needs to find some pictures for her mother and I for our tattoos, and we'll be a matched set!

Okay, other than that, there's not a whole heck of a lot of news. We had some family portraits taken digitally, so once we get those, I'll make sure that Nici posts a couple up. Talk to y'all later!

Daddy

Friday, August 16, 2002 at 09:36 AM (CDT)

Well, so far, so good. We're on our fifth day of chemo, and Jessi has only had one bout of nausea, which was easily taken care of with Zofran. Hmmmm...last time this happened, she waited until just before they left, then lost it completely. Guess we'll just have to wait and see, won't we?

Jessi got a unit of blood last night. Not that her counts were real low, but Doc Greenfield decided that since she was a little low, and it wouldn't be coming back up any time soon that it was called for.

Jessi has, as always, become the little star of the hospital. She started up "Jessi's Body Art Salon" with a set of body crayons that she got from Denise's fiend Tami. She's actually quite good, especially for a six-year-old! From what Nici was saying, she had people from all over the hospital coming down, so she was happy to be of service. Gee, I wonder if the baby bear likes attention or anything...

Jessi and Nici should be home either later tonight or early tomorrow morning, depending on when the doc wants to let them go. It's a matter of coordinating their homecoming with medication delivery, so if they won't get out of there till after six o'clock, Nici will probably opt to stay until tomorrow. I've got the duty tonight, which means I won't be home until tomorrow morning anyhow, so it's all up to them.

Well, I'd better get running along. Y'all have a good one, and I'll talk to ya' later!

Daddy

Tuesday, August 13, 2002 at 09:48 AM (CDT)

Good morning, y'all! Just a quick note to let everyone know what's going on. Jessi had her Port-A-Cath placed yesterday in her chest. Pretty nice - no maintenance on our part, and it doesn't stick out of her by two feet...heck, you'd hardly even notice it if you didn't know it was there.

Her chemo started last night, consisting of Mesna (To protect her kidneys from the chemo), Cyclophosphamide, and Toptecan. She's never had the Topotecan, but if memory serves, it took a couple of days for the Cyclo to start making her sick. She was doing fine when I stopped in this morning before I came to work, so we'll have to wait and see how long it takes to affect her.

They've already started on Zofran to handle the nausea, plus a small bolus of Benadryl as needed for "breakthrough" nausea as it's needed. The Zofran has always served us well, so hopefully she'll be pretty well controlled this time.

A special thanks to Becky for Blaze. That big ol' horse takes up half of her bed, but she was well-snuggled this morning.

Anyhow, Jessi's sinuses seem to be clearing up, just in time for the chemo to mess them up again. Everyone involved is pretty well convinced that she just had/has a chronic sinus infection, so it's more a matter of getting it controlled rather than worrying about it being tumour growth.

Speaking of tumours (Well, kinda...), they sucked out twenty cc's (About four teaspoons) of bone marrow out of Jessi's hip yesterday to see about growing the tumour cells for her custom vaccine and personalised drug testing. It sounds like a pretty neat study that CHLA is doing, under the watchful eye of Dr. Reynolds, so we shall see (Hopefully soon) how well it works.

Anyhow, better get running. Things are still a "go" for Florida in September, so everyone keep their fingers crossed. Talk to y'all later!

Aaron...a.k.a. Daddy

Thursday, August 08, 2002 at 09:36 AM (CDT)

Well, we got to meet Dr. Clarke Anderson and Dr. C. Patrick Reynolds (Never even bothered to ask what the "C" stands for) yesterday. Our appointment went really well. As usual, Jessi charmed the socks off of them, and gave everybody a good laugh with a pretty serious fit of giggling. Dr. Anderson even had to go into a neutral corner to compose himself.

Anyhow, it looks like we'll be starting chemo again on Monday up at Cottage Hospital with Dr. Greenfield and Dr. Hodder. Jessi will be on Cyclophosfamide and Topotecan to start with. She'll be inpatient for the time that she's on the meds, which honestly makes me more comfortable. Once we've done a couple of cycles of that, we'll be doing scans to see how well it's working, and see what studies we qualify.

As for studies, we've been disqualified for probably two right off the bat. Unfortunately, they're the ones closest to us. UCSF is doing a study using a chemical called MIBG that, since Jessi was MIBG negative on her scans, they can't use. CHLA is also doing a study using a drug called BSO and Melphalan that, if what is in Jessi's sinuses is a tumor, she is not eligible for. That leaves antibody studies only, and most of those have waiting lists. Guess we'll see what's going on in October/November.

When she goes in Monday, they'll be placing an access port under her skin in her chest, instead of a central line. This way, she can still go swimming and play like a "normal" little girl, and we don't have to worry about flushing it every day, or having it get tugged on. Plus, while she's under anesthetic for that, she'll probably get another bone marrow aspiration. This one isn't to see if anything's there...it's actually to see if they can get a cell-line from the tumor cells top grow. This way, since they're not doing surgery, they'll have something to send to Baylor for their vaccine trials, and they can test different medications on her specific cells to see if they work before they give them to her. Sounds like a good idea to me!

We're still heading for Flordia in September for her Make-a-Wish trip. One advantage of having the port, like I said, is that can still get in the water and swim with the dolphins and the manta rays. I'll be interested, specifically, in seeing the dolphins reaction to her (See if they notice that something's "different"). We are all looking very much forward to it, so it should be a really good time.

Okay, I'll let everyone go now. Next time you here from me will be after she starts chemo, so I'll keep everyone updated on how she's doing. As soon as she starts to lose her hair again, I lose mine, so please take pity on me and my bald, ugly little head. I'll talk to y'all soon!

P.S. - Just got an e-mail from Dr. Anderson. I guess the CHLA radiologist seems to think that her sinuses are clear of tumor, so the study at CHLA BSO/Melphalan study may still be open for us.

Friday, August 02, 2002 at 11:50 AM (CDT)

Well, no news was bad news this time. Jessi has relapsed. Dr. Sato finally called yesterday afternoon and told us that Jessi's bone marrow was positive for tumour cells.

We are looking at all of the clinical trials that are available at this time, which ones we are eligible for, and which ones seem to hold the most promise. We may end up back at City of Hope, but under a different doctor. There are some very serious trust issues with Dr. Sato, and we don't want to be going through all of this wondering if there is information that we should, but don't, have.

Last night was a vent-fest. Actually, it was the family getting together and having way too much to drink, but we got a lot of it out of our systems. We found out that Jessi's grandparent's Japanese foreign exchange student and her friends are planning on doing a "Tower of a Thousand Cranes", a traditional symbol for good health. Actually, one of their old students did one when Jessi was going through chemo last time around, but we didn't have the heart to tell her that.

Just to dispel any rumours, Jessi is feeling and doing fine right now - she is completely asymptomatic. The sites that were questionable are in her belly, near the original site, behind her heart, and in her sinuses. Nothing in her brain, nervous system, or anywhere else that will cause her discomfort or serious problems as long as they're caught and dealt with soon. The surgeon down at City of Hope told us that everything is completely operable at this point, so we have a very good base of fire to run our attack off of.

Anyhow, that's all of the news that is fit to print. Jessi knows she has relapsed, and has taken it a whole lot better than we have. It's possible that she doesn't remember a whole lot of the treatment, which is a good thing, as it's all about to begin again. Anyhow, I'll be keeping this updated regularly, so keep checking back and the info will be as accurate as what we have. Talk to y'all later.

Daddy

Wednesday, July 31, 2002 at 10:24 PM (CDT)

This is going to be quick... I promise we will add more later.
Dr Sato at City of Hope thinks that Jessi has relapsed in three spots, however the surgeon doesn't think so...
Jessi did a bone marrow biopsy on Tues, we are still awaiting results ( Dr Sato hasn't found her way to the lab to look at the slides yet) On Friday Jessi is having a CT guided needle biopsy to determine if one spot is new growth or related to the stomach virus she had for the last two weeks.
There is alot to say on this and a lot of venting (Dr Sato told Jessi she relapsed before any of the followups... ) But I will save it for another day. I promise to update everytime we get new results... and I'll tell you the whole story later.
Love Denise

Well, Denise may not be venting, but I am more than willing to!

So far we haven't heard anything back from Dr. Sato about the bone marrow biopsy. I think everyone has agreed with me that this should have been done as a priority. I just find it really irritating.

Second, we have had two doctors dispute her findings. First, the surgeon who's doing her biopsy on Friday told Jessi specifically that he didn't think she had cancer again (I like this guy!). The second, her ENT doc in Santa Barbara, couldn't find anything resembling cancer in her sinuses, which was one of the three "questionable" spots. Given, he was going off of a two-week old CT scan, but it was certainly reassuring.

I am drafting a complaint letter to the California Medical Board about everything that has occurred over the last year. Between the lack of communication, and the fact that she told us this in front of Jessi (Who was scared to death!), I'm about ready to choke her. Hopefully the Board can do something since we haven't been able to.

Denise has enlisted the aid of Dr. Greenfield up at Cottage to hopefully get the results of the bone marrow biopsy. It may only be a preliminary reading, but it's important nonetheless!

Anyhow, Jessi is feeling and doing fine. She's visiting with her sister, Missy, who flew down from Lake Tahoe on Tuesdayand hung out with us at City of Hope. Her father hasn't made it out yet, but I understand he's going to try to make it out in the next couple of weeks for a weekend.

Okay, I'd better get running along. I'm sure that Denise will be adding more in time, so I'll sign off. I'll talk to y'all later!

Tuesday, July 23, 2002 at 10:36 AM (CDT)

Howdy, y'all! Just a quick little update on Jessi. We've apparently been fighting a gastrointestinal virus that's been giving her some pretty nasty belly, flank, and lower back pain. She's been waking up crying at night, but it's well controlled with pain meds (Lortab, to be exact). The sinus infection is still around, too, but we're starting Zithromax today for a while, so hopefully that'll take care of it once and for all.

Other than all that, things seem to be going pretty well for us. Jessi's looking forward to starting first grade in September. We're not sure, yet, if she'll be going back to her old school and getting sign language tutors (Her hearing has gotten slightly worse recently, but it may be because of the sinus infection) or sending her to a school in Orcutt that has a full-time hearing impaired program.

We have Jessi's one-year scans on the 29th, so the stress level has, again, gone up a notch. This is our last appointment (HOPEFULLY!!!) at City of Hope, then it's back to Dr.'s Hodder and Greenfield at Cottage for the rest of our tour of duty. If it sounds like we're happy about it, we are. Every time Jessi sees Dr. H, she runs up and gives her a big old hug, so apparently she likes her. We're looking forward to the shorter drive, too!!!

On a sadder note, one of the young men that Jessi met at Cottage, Morgan, passed away from osteosarcoma. We would like to send his parents our best wishes and our deepest sympathy. He was a heck of a kid, and in the short time we knew him, he made a real impact on Jessi's life. Best wishes to his family.

Okay, I'll be letting y'all alone now. Have a good one, and I'll talk to everyone later.

Daddy

Saturday, July 13, 2002 at 08:49 PM (CDT)

Hello everyone!!!

Well, Jessi is inpatient once again.... at COTTAGE HOSPITAL again! this time for a double whammy sinus / ear infection. It seems to be bad enough that they are discussing doing a lavage of her sinuses, (This is when they do a high pressure wash of the sinuses). They are also discussing ear tubes once again, which will make it interesting when we go to Florida (We're supposed to swim with the dolphins...earplugs, anyone?).

Check out the new photos!

Love you,
Denise
PS to Uncle Gary... you will always be in our hearts, Congratulations on your wings, we will miss you!

PPS (Daddy) - Jessi got home yesterday (Then immediately demanded to spend the night at her Grandma's). We're holding off on the lavage and tubes until we're seen after ten days of antibiotics by an ENT specialist. Guess we'll just have to wait and see what happens then.

Monday, July 01, 2002 at 10:39 AM (CDT)

Good lord, what a weekend! Jessi had a blast at the annual Lompoc Flower Festival this weekend. Got a bit of a sunburn, but she didn't seem to mind too much. We also had a housewarming party for one of our neighbors, and Jessi got to play with all of the kids that were there (Until about eleven o'clock at night!).

We're still on antibiotics for her sinus/ear infection, but it seems to finally be subsiding. She's feeling a heck of a lot better, and she hasn't had a fever for about 5 days. Big improvement, lemme tell ya!

Jessi's Dad came in from Las Vegas yesterday, so she saw him for a couple of hours. I guess she's gonna spend some time with him today, but I don't know when. She had fun with that, since she doesn't see him too often (Vegas is about an eight hour drive from here).

Looks like things are set for our Make A Wish trip to Florida - we'll be there the last week of September. Hopefully the weather will cooperate. We just didn't much want to be there in the summertime, when the heat is on! Jessi's looking forward to spending time hanging out with the dolphins and manta rays at Discovery Cove, and then of course Mickey and Minnie at Disneyworld.

Okay, I'll let everyone go. Have a wonderful day, and I'll talk to y'all later.

Wednesday, June 26, 2002 at 11:51 PM (CDT)

Well, after three weeks of antibiotics, including oral and IV, it looks like we've finally beaten Jessi's last sinus infection into submission. We've been spiking fevers for the last few days, but at least we never got admitted. I hate that drive, especially at three in the morning!

Things are going really well. Jessi's next scans are on the 17th of July, and we normally get the results back the same day, so I'll keep everyone posted about that.

Anyhow, just wanted to touch base right quick. I guess it's back to our house search - prices have officially gone nuts around here, and we're not even a big town, let alone a city! Talk to y'all later!

Monday, June 17, 2002 at 10:11 AM (CDT)

Okay, okay. So I was horribly wrong. Once HealthNet signs a contract, it takes an act of Congress to get out of it. Ah, well. City of Hope has been really good clinically, but Cottage Hospital just has more of a friendly, "family" kind of atmosphere to it.

Jessi has been taken off of the Accutane for a little while to see if things improve without it. She's on antibiotics (AGAIN!!!) for an ear infection and a sinus infection. Hey, when she gets sick, she just makes sure she makes it worth her while! No really major problems to speak of, and we haven't been in the hospital as an inpatient, so we're happy!

Apparently there's been a little bit of a controversy with Jessi's original diagnosis. We've got one doctor calling it Neuroblastoma Stage IV, and now they're throwing Ganglioneuroblastoma (Simply a difference in the way that the tumour was formed)in to the mix. I guess they just thought we had learned too much, and wanted to throw us for a quick loop. Denise and I still haven't figured out if there's a difference in the prognosis, but apparently, since her whole tumour had been removed before she started chemotherapy (Most kids don't go into surgery until after the fifth round of chemo to down-size it enough for the surgery to be successful), her prognosis should have improved. Lord, I hate being confused!

OKay, now that I've started to ramble, I'll be scooting along. I'm sure the Navy would like me to earn my living for a change. Talk to y'all later!

Aaron

Thursday, May 30, 2002 at 10:04 PM (CDT)

Well, we had an exciting weekend...
Jessi complained of blurred vision in her left eye, one symptom of a serious side effect of the high dose Accutane (pseudotumor cerebrii - papilledema) which when translated into english means intracranial hypertension, or a buildup of cerebro spinal fluid in the brain.
I took Jessi to her Pediatrician and he sent her to an Opthamologist (within 30 minutes) to look into her eyes for signs of Papilledema... which he did find. Because Jessi was lacking the more severe symptoms (headaches and vomitting) It was decided that we wait until Tuesday for an MRI, unless the more severe symptoms presented themselves. Within two days of stopping the Accutane the symptoms went away, but we did go to City of Hope for the MRI, which came out completely negative.

Now, we need to find out if we're going to stop taking the Accutane, reduce the dosage, or keep taking it as we have been. I guess we need to talk with the doctor about what the benefits are versus the risks and go from there. Normally, children will only take it for 6 months, but Jessi was going to be a "guinea pig" and take it for 18 months.

Anyhow, as it stands, we are trying to find a way to change doctors and go back to Cottage Hospital, since there has been a major lack in communication and customer service on City of Hope's end. Unfortunately, our HMO signed a one year, 1.4 million dollar contract with COH, which is going to be a real bear to get out of. Well, where there's a will, there's a way, or so I've heard.

Okay, I think we've said enough. Y'all have a good one, and we'll chat with ya' later!

Denise and Aaron

Thursday, May 16, 2002 at 10:12 AM (CDT)

Well, it finally happened. Jessi has outlasted both her mother and myself. We spent all day Sunday at Great America for the Courageous Kids get-together, and all day Tuesday at Disneyland, and Jessi was still ready and rarin' to go at the end of both days. Mom and I just wanted to go to bed!!!
Jessi had an absolute blast at the amusement parks, but I think she enjoyed breakfast on Wednesday at Goofy's Kitchen best. All of the characters walk around, visit the tables, sign autographs and whatnot, so Jessi had a good old time doing that.
Jessi has been doing awesome lately. No real illnesses to speak of, and all of her tests have been coming back fine. She's been having some pains in her hip near her bone marrow draw site, but Dr. Sato thinks it's just growing pains, so we'll go with that.
Looks like we'll be doing her Make a Wish trip at the end of June. We have to work it around her Accutane schedule, which makes things a little more interesting, but it doesn't sound like it'll be too much of a problem.
Speaking of Make a Wish, Denise should be going to a class today to learn how to be a Wish Granter, as long as she can escape from jail for a few hours (Sorry, bad pun...).
Anyhow, I've probably written a bit much. Talk to y'all later!

Thursday, May 02, 2002 at 03:49 AM (CDT)

Hello everyone!
Thankfully there is no new medical info to tell of. Jessi is doing great with the slight exception of expected side effects from the Accutane(dry skin,chest congestion, a bit emotional)
We have a very busy couple of weeks coming up though... on mother's day (Sunday) we will be in San Jose for the courageous cancer kids day at Great America. Aaron, Jessi and I are excited to spend the day with Elke and Kenny. From there we drive straight to City of Hope for Jessi's Monday appt with Dr Sato. After Jessi's appt we will be seeing Aaron's best friend Christy who will be in LA on her honeymoon!!! (I hear a report that we may be going to Disneyland with them on tues). And... on the 14th of May Jessi's father, Hank, will be moving to Nevada.
I guess that's all for now, I will try to be better about keeping youall updated.
Denise

Monday, April 15, 2002 at 10:59 PM (CDT)

HOWDY!
Well, the results are (mostly) in... They seem to be clear!
There is one questionable spot on the CT; a "slight, subtle thickening" found on one of her abdominal muscles (not the side the tumor was on). I can not remember the name of the particular muscle... Aaron is in charge of medical terminology and all of the latin names of body parts, so I didn't ask the Dr to repeat it... and guess who wasn't listening just then????
No one is particularly concerned though, Jessi has been building up muscles lately (she finally hit 50 lbs!!!) so that could account for the difference between these scans and the last ones.
Thanks to all who sent their thoughts and prayers, we appreciate them immensely. talk to you soon,
Love
Denise

PS happy Birthday Aunt Diane! we love you!!

Friday, April 05, 2002 at 07:59 PM (CST)

Hello everyone...
This is going to be a quick one, as I am getting ready for work.
Jessi's nine month scans are set for April 15th... please keep us in your thoughts and prayers.
I ACTUALLY PUT IN NEW PICTURES!!

(I promise to add more later, the old entry was seriously outdated)
Denise

Sunday, March 17, 2002 at 09:43 PM (CST)

Well, Jessi has contracted yet another infection - this time, she's being treated for bacterial pneumonia. The doctor over at our local Urgent Care is treating it, instead of sending us all the way down to City of Hope, which is nice. Dr. Eckstrom loves Jessi, and she really likes him; plus, he's a really good doc (He's worked on me, too - he sewed my face shut after a dog bite...27 bloody stitches...). Everyone got to remain at home for once. We started antibiotics yesterday, and Jessi's already feeling a whole lot better, so it looks like things'll be okay.
I haven't heard anything more about the bone marrow/stem cell donation that the vampires down at COH...never mind. It could be anywhere from six weeks to three months before I hear anything definite, but the anticipation is killing me. As uncomfortable as I know it'll be, I really hope I end up being "the" match. Just have to wait and see.
Well, I'm gonna sign off. Y'all have a good night, and we'll talk to y'all later.

Daddy

Thursday, March 14, 2002 at 04:05 AM (CST)

Hello everyone...
We are home from City of Hope, everything seems to be fine. Jessi's platelets are higher than they have been in a year (191) her White blood count is 6.1, her hemoglobin is a little low at 9.5 but isn't too shabby all things considered.
Jessi will be wearing high top tennies (not too easy to find when they are out of style) per Dr's orders... it seems she has "loose ligaments" probably due to not much muscle tone. (Somehow high tops will help)
Jessi's next scans will be on April 15th (the whole workup)

Aaron gave about 20 vials of blood at City of Hope so that they can determine if he is a perfect match and can go ahead with the donation of stem cells or bone marrow... we are hoping he is. (he also gave 2 units of platelets while he was at it) (I was feeling just a little pale by the end of it!....Aaron)

I promise to take new pictures soon, I know I'm falling behind.
Love to you all
Denise

Tuesday, March 05, 2002 at 11:38 PM (CST)

Well, things have been going very well around here. Jessi been feeling really good, but she's been a touch whiney. Hopefully it's another growth spurt! Otherwise, she's been her own cute little self. We got her report card today (Since when do Kindergartners get report cards!!!!!?????), and she is a glowing example of studenthood. Glad she doesn't take after her mama or me!

Looks like when we go down to City of Hope on the 11th, Jessi won't be the only one doing lab work. I got a call from the Marrow Donor Center there asking if I would still be interested in donating. Seems there's a little girl whose HLA type matched mine, so I'll be starting the lab work for for either a bone marrow or stem cell donation. Being active duty military, everything would be handled by the Department of Defense marrow program, but that's a good thing - from what I've heard it's done at taxpayer expense instead of the patient's. Guess we'll have to wait and see.

Anyhow, I'd better be getting off to bed - only six hours before I have to wake up and start another day! Talk to y'all later!

Daddy

Friday, March 01, 2002 at 06:45 AM (CST)

Good morning everyone!!
Well, we haven't been in the hospital for two weeks... and it feels strange.
I have been back at work for 6 weeks now (actually 4... Jessi spent a total of two weeks in the hospital) It is a bit hard to get used to, and I'm really not used to being around grown ups.
I'm not sure how long it will be until I learn how to make small talk again, I feel like a different person now.

On a different note... Jessi LOVES school! She is also learning to make friends again.
Jessi's school does class pictures twice during the school year, a great idea I think.. to see how far your (MY) child has come during the school year.
I will be taking more photos of Jessi and will update the photo album soon.
Talk to you all soon
Denise

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Tuesday February 19, 2002 2:50 PM CST

Hey, guys! Just a real quick note to let everyone know that Jessi got home Friday night. Turns out she had a reoccurence of her pneumococcal infection, and not an ear infection as the doctors originally thought. Go figure. She's doing great, but she's getting some back spasms from the Accutane. Nothing we can't handle.

Anyhow, like I said, just a quick note. I'll write more when I have the time.

Daddy

Wednesday February 13, 2002 4:09 PM CST

And they're off again! Jessi has been complaining that her eye's been hurting on and off all day today, so Denise took her over to urgent care at home. Paranoid as we are, eye pain is one of the signs of a recurrence of disease, but Jessi has a 103.5 degree fever because of a nasty little ear infection. It never ends!

Jessi has been thrilled by all of the Valentine's Day gifts and cards that she's been getting. Of course, I don't think that we've actually gotten her anything, but procrastination has it's benefits - we get to see what all everyone else has sent!

Other than her ear, Jessi has been doing really well. She is still loving every minute of school. She's been taking a lot of "Advanced Reader" tests and has been doing extremely well on those. If we can keep her in school for more than one week out of three, things should really take off!

Denise is NOT having fun with work, but she's been trooping through it. She works 12 hour night shifts three days one week then four days the next. I guess it'll just take some getting used to. Of course, with the amount of time that Jessi's spending at the hospital, it'll be a miracle if she works more than a week in a row!

Well, that's all the news that's fit to print. I'll write more when we know what's going on. Talk to y'all later!

Daddy

Monday February 4, 2002 11:03 PM CST

Hello everyone!
Jessi and I got home from City of Hope late Thursday nite, equipped with IV meds and a PIC line (permanent intravenous catheter).
We had an appt with Dr Sato at COH, and...
The PIC line was removed today!! Jessi is 100% accessory free!!
I resumed working on the 23rd of Jan (they loved it when I missed work the second week) It's been so long since Jessi has seen me in uniform.... she has now decided that she wants to be a cop and see all of the 'bad guy inmates'.... I still say she's going to Med school!

Denise

Wednesday January 30, 2002 6:49 PM CST

Well, the kids have been living at their home-away-from-home since Sunday night. Amazing how lonely an apartment can get. The good news is is that Jessi may be home on Friday, as long as her blood cultures come back negative three days in a row.

Apparently, Jessi has/had a pneumococcal blood infection that is being treated by antibiotics - hopefully successfully. She never felt poorly, just had a fever. I went down after work on Monday (No small drive, let me tell ya!) and she was up playing and tearing around like there was no problem! Her Uncle Mark and Aunt Maria came down to visit today, so I'm sure she had fun with them.

On a really pleasant note, Jessi's tummy tube is no more. They thought that that was what had caused the infection, so they took it out on Monday morning. She is VERY happy about that, as that was the last thing holding her back from going swimming this summer.

Anyhow, they should be home very soon, so I'm keeping my fingers crossed. I'll let everyone know if anything else of note happens.

Aaron

Monday January 28, 2002 0:09 AM CST

Hey, kids. Just wanted to write really quick and let everyone know that it looks like Jessi will be at City of Hope for a couple of days. She has a fever of 102.5 this evening, and that's enough to get her admitted. Funny part is is that she doesn't feel bad, just tired. Go figure.

Well, I'm gonna try and get some sleep. I'll let y'all know what's going on as soon as I do. Bye!

Thursday January 24, 2002 12:23 AM CST

Well, it's official. Jessi is exceedingly bright! She received an award from the school district at the last school board meeting for her reading ability on Tuesday, for reading the entire "500 word list". Apparently, no other kindergartner at the school has managed to do that yet. Never know, Jessi may just start a trend.

According to the school's reading specialist, Jessi reads and comprehends at a 3rd grade level - kinda scary when you think that she's really only been in school for six or seven weeks. I guess all the time spent reading at the hospital helped! She is very proud of herself, as we are of her, too!

Everything seems to going very well. All of her six month scans were clear, as was already posted. We hope to have her G-tube out in the beginning of February. The doctor has agreed to do so as long as she's gained some weight back. Considering how much she's been eating lately, I don't think that'll be too much of a problem!

Denise got to start back at work at the jail last night. She's not too terribly thrilled about it, but we've just gotta do what we have to, right?

Well, that's all the news that's fit to print. Talk to y'all later!

Daddy

Wednesday, January 09, 2002 at 09:12 AM (CST)

hi this is Jessica.
My scans went good, they were clear!
love,
Jessica

Note from Mom:
Today Jessi passed the test to become a "royal reader" Which is the first grade equivalent of "kinder reader".
Starting tomorrow Jessi is going to be in the advanced reader program and will go to a first grade class to get her reading books etc...
Jessi is the first kid in any of Mrs Mcnutt's classes to ever become a royal reader in kindergarten!
Love,
Denise

Monday, January 07, 2002 at 11:29 PM (CST)

Denise and Jessi just got home from a short trip to City of Hope, for Jessi's six-month scans. Everything turned out wonderfully, even though there was a little excitement after her CT Scan. Seems there was a shadow in her right hip joint, but a follow-up MRI scan showed it to be non-existent. Much ado about nothing... Better it be nothing, I always say.

Jessi had a lot of fun up with my family in Seattle. It was a mother of a drive, but she even acted great during that. Amazing how sweet she can be when she puts her mind to it. She's loving kindergarten, of course. The teacher had to go to higher grades to find her homework, but she (Mrs. McNutt...appropriate name for a teacher...heheheheh)is just amazed at how well Jessi is doing with only a little schooling.

Nici says, and I quote, "Maybe tomorrow I'll get off my lazy butt and post some new pictures". And I will say farewell. Y'all have a good night, and I'll talk to ya later.

Daddy

Saturday, January 05, 2002 at 11:27 AM (CST)

Hello to everyone!!
We are home from Washington... and I have officially decided NEVER to drive that far again! Yup, even if it costs us an arm and a leg (Aaron's of course) we are flying next year.
We had a wonderful time, and it was great to see everyone. The new baby is adorable and we now even have photographic evidence that Kjell CAN smile! (he's not a grouch, just a bit shy)
FYI: Kjell is Aaron's younger (but bigger than Aaron by a long shot) brother.

Jessi's six month scans are on Jan 7th at City of Hope, Jessi, Grandma and I are going to go up on Sunday and stay at COH because the fun and excitement starts at dawn on Monday!
We will be sure to update when we get the results.

Jessi has started eating! Not really enough yet to lose the G tube... but we are working on it.

Love and hugs to all
Denise

Friday, December 21, 2001 at 03:09 PM (CST)

Hello everyone!!
Just wanted to let everyone know how we are doing... Jessi LOVES Kindergarten! She has already passed a reading test to become a 'kinder reader' which means she is among the best readers in her class.

We are gearing up for Christmas... and then on the 27th we are going to Seattle Washington to visit Aaron's family.

I am posting some new pics...
Jessi on Thanksgiving ( I know, I am really behind!)

Love to you all
Denise

PS Jessi's next scans will be the week of January 7th... Keep us in your prayers.

Friday, December 07, 2001 at 09:25 AM (CST)

Hey there boys and girls! Just a really quick update, as only one thing has occurred since, what, Wednesday?

We had a bit of an inconvenience on Wednesday night. One of the lumens in Jessi's central line split, so she had to go down to City of Hope yesterday morning. The good news is is that instead of replacing it, Dr. Sato decided it was time for it to come out. We have finaly begun to de-acessorize. Now if we can just get her to eat so we can get rid of her g-tube..

On a personal note, Jessi should be a cousin to a brand new, bouncing baby boy sometime this weekend. My little sister is due with her second child, so very soon, young Brekin should be introduced to the world. Jessi is most definitely looking forward to meeting him when we go up to Seattle after Christmas. See how she does with someone elses baby before we have another one of our own!

Okay, better get back to work. Talk to y'all later!

Daddy

Wednesday, December 05, 2001 at 04:20 PM (CST)

Good afternoon! Just a quick little progress report while I'm stuck at work, protecting our great nation from all enemies, foreign and domestic and whatnot (A Navy corpsman's job is never done!).

Jessi, after much deliberation, has finally started Kindergarten. She started on Monday, and is already getting an award at a school assembly tomorrow for being a "Kinder-reader". There's a list of words that the kids have to read for their teacher, and she is well beyond the words that they gave her (The kid reads words like "obviously" and "embarrassing", and they have words like "have" and "it" on the list.). She loves her class, and just can't seem to get enough homework to satisfy her inquisitive little mind. Dunno where she got that from....

She's on her second month of Accutane therapy, and seems to be doing very well with it. She's still getting the gastric tube feedings, but the doctors say that that can be normal anywhere up to a full year after transplant for the NB kids. Hopefully we can get her eating something soon, but we're not pushing it. She'll eat when she wants to eat. Heck, she ate like a little bird before this anyways, so we're willing to wait.

We're still driving up to Washington to see my side of the family a couple of days after Christmas. It's an 1,100 mile drive, so it'll take a couple of days to get there and back, but it oughtta be a lot of fun. There's a whole mess of people that want to see her again, and a bunch that want to meet her, too, so she should really enjoy herself.

Well, I'd better run along. I'll talk to y'all later!

Daddy

Tuesday, November 20, 2001 at 03:44 PM (CST)

'ello, 'ello! Sorry, it was my best Harry Potter imitation. Seems to be sweeping not only our happy little household, but the nation, as well. Jessi has fallen deeply in love with the movie, and has seen it twice.

Speaking of Jessi, she's doing great. We stopped the Vancomycin a while back, so now she just has to finish out the Flagyl. It helps if we leave it where we can get to it...we seem to misplace it occassionally, but no big deal.

Jessi (Hopefully!) will have her hearing aides this week. It'll be nice to carry on a conversation without hearing "What?" after every sentence! These overly-expensive little monsters are the only thing holding her back from starting kindergarten, so with any luck at all she'll have them soon! She's chomping at the bit to get out and play with some kids, and not just her parents!

Other than that, nothing much has happened. Jessi's next appointment with Dr. Sato, down at City of Hope, is scheduled for next Monday. I'm not entirely sure what's going on then, but I'm sure I will find out soon. Gotta stay more in the loop, I suppose.

Anyhow, as always, thanks for everything, and I'll talk to y'all later!

Daddy

Monday, November 12, 2001 at 12:02 AM (CST)

Hey, kids! Hope everything's going well for everyone out in TVland! Jessi is finally getting back to being the smiley, happy baby that we were used to, back in early January or so...has it been that long already?

Our dance card has been really full lately. Jessi has a rather strict schedule of antibiotics that we've been following. IV Vancomycin, Flagyl, and Accutane, with extra G-tube feedings mixed in there, too. We've been busy! Luckily, today was the last day of Accutane for the next couple of weeks, and the Vanc only goes until Tuesday afternoon.

We went to a fundraiser today for Life Chronicles, a really neat organisation that makes video tapes to pass down a legacy, or keep kids in touch with their families. Stuff like that. Kinda felt awkward - here I am an enlisted Navy-man, and the people surrounding me are million-, billion-, and trillionaires (Seriously!). Yikes! Jessi got to teach the MC, a fella named Larry Crandall how to "Walk the Llama Llama" (From The Emperor's New Groove), and she got to get up and draw names for a raffle, and generally be the center of attention. It was really a lot of fun.

Anyhow, Jessi is kinda getting back to normal. Her counts are good, no fevers, and her attitude has seriously improved now that the antibiotics are kicking in and getting rid of the bugs. We're going to try to get up to Seattle for Christmas so she can she my side of her family, and meet her new cousin, who's due on the 8th of December. We'll just have to see if we're flying for four hours or driving for eighteen.

Okay, that's it from me. Tune in next week when we'll hear the announcer say "Th-th-th-that's all folks!

Daddy

Friday, November 09, 2001 at 02:44 PM (CST)

Hello all!
We are coming home today!
In about 30 minutes or so a surgeon is coming in to change Jessi's G tube button, it seems her current one is a bit on the small size.
Following that is an hour of Vancomyacin (antibiotics) THEN we get to go home.
Jessi should be getting her new hearing aids sometime next week... and then she can start Kindergarten.

I will write more when I get home....
Love to all
Denise

Sunday, November 04, 2001 at 09:25 PM (CST)

Jessi's back at City of Hope for about the next week or so. She spiked a fever of about 103.4 on Friday night at about 11:00 p.m. Ran over to the hospital here in town, and low and behold, we drove down to City of Hope (Driving at 3 a.m. is not my idea of fun!).

Well, it ends up that Jessi has an infection in one of her lines, and another intestinal infection, which are both being treated with antibiotics for about the next week or so. The intestinal infection kind of limits her movement (She cannot leave her room), because it's very contagious with anyone who's immune system is impaired at all. So, it looks like they'll be getting some enforced mommy-baby time for awhile!

Jessi is feeling a lot better now, so it's not too bad. She was nauseous and vomitting with diarrhea yesterday, but that's settled down now that the antibiotics are beginning to work. She should be back home on Friday or Saturday, with any luck.

Oh, a quick thanks to my sisters Elke and Petra, and of course Kenny, for driving all the way down from Berkeley yestreday. Even if she didn't look it, Jessi really appreciated it. Especially the visit from Kenny the dinosaur. She thought that was way cool!

Anyhow, I will talk to y'all later. I think it's time for a nap!

Tuesday, October 23, 2001 at 09:51 PM (CDT)

Well, we got the results of most of Jessi's tests yesterday. Her bone marrow is completely free of disease, and her scans, while clear of evidence of disease, showed some inflammation near her surgery site, which is a little concerning. Nothing too major, just a little unusual. Her cranial CT scan showed some "dilated ventricles" in her brain, but no signs of blockage, disease, or hydrocephalus.

We also got permission to stop her TPN feedings at night, which is a MAJOR plus. This way, she's not hooked to any tubes or other obstacles if she has to get up and go to the bathroom at 2 a.m.. She is now doing 4 big g-tube feedings during the day instead of three small ones. Hey, there had to be some trade-off, ya know!

Anyhow, she is doing really well, and is in darn good spirits for a kid who's been through the wringer once or twice. Nici, on the other hand...heheheh. Just kidding!

Gotta run. As always, thanks for everything, and we'll talk to ya later, same Bat-time, same Bat-channel.

Daddy

Friday, October 19, 2001 at 09:57 PM (CDT)

Hello all!!!
Jessi and I just got back from City of Hope, we had two days of scans and tests... we will get the results on Monday when we go back and see Dr Sato.
We (my Mom and I ) will be taking Jessi and her cousin, Nico to Knotts Berry farm on Sunday and then spending the night in hope village.
Today Jessi took part in a public service announcement for COH... she sat right next to BB King, and had one speaking line (with about seven other kids) "Hope is the sweetest sound" followed by a guitar rif by BB himself.
In the photo album is a picture of Jessi with Jonny... He is an illustrator for Disney and sent Jessi the most beautiful picture of Ariel (the little mermaid).
Check back on Tuesday for updates on the tests... keep your fingers crossed for good results
Love
Denise

Friday, October 12, 2001 at 10:41 AM (CDT)

Hello everyone!!!
Well, it seems that we were a bit premature to love our HMO... They have just notified us that we have to drive to City of Hope every week for our follow up appointments instead of doing them here with Dr Hodder.
It seems that health net pre paid COH for one year of service... YUK!!
Oh well, we can take Jessi to Disney and Knotts while we are there.
Jessi still isn't eating, she has even slacked off on the juice. She asked me to take her out for a Filet Mignon dinner the other nite (second nite in a row... she's getting expensive) she still will not chew, but she sucked all the flavor out of it.
I think I will take her to the Dentist to make sure her teeth are okay.
I will post new pictures as soon as I import them from my laptop...
Talk to everyone soon
Love
Denise

Wednesday, October 10, 2001 at 11:53 AM (CDT)

Well, it's been a week, and things seem to be going well. Jessi's eating a little bit (She even tried some steak and Filet Mignon last night), but we're still doing the TPN and tube feedings. Looks like that'll be going for a while longer.

Everyone's spirits are much improved now that they're home. Jessi's been getting out some (She desperately wants to go miniature golfing!). We went to the Pediatric Hematology / Oncology Reunion this last weekend, which was fun. It was good to see everyone. Of course, then we had to go get a new gastric tube, for reasons I will not disclose at this moment. The new one is just a little button that sits flat on her stomach, instead of a big, seven-inch-long tube that stuck out. It's been a little battle to use it, but we're getting past that.

Jessi's counts heading up and / or holding steady, so that's a relief. When she feels well enough, and we know what side effects the Accutane therapy will have, she'll start Kindergarten, hopefully in the next week or two. Maybe an hour or two in the mornings, just to get her worked into it. She doesn't have a whole lot of stamina, so she'll take it slow.

Anyhow, gotta run. We appreciate all the support. I'll talk to y'all later.

Daddy

Wednesday, October 03, 2001 at 11:26 PM (CDT)

Well, it's a little bit belated, but the kids are finally home! They've actually been home since Monday night, which was quite a surprise to me! Nici said they were leaving Tuesday, but for the first time in her life, she managed to keep a secret! Jessi seems incredibly happy to be home (After 74 days away, I can understand why!), and I definitely am!

Jessi is still doing the TPN and enteral feedings through the gastric tube, but she has been willing to drink some juice and water, and munch on a little ice cream, which bodes well for the near future. She is going tomorrow for her Kindergarten class pictures, as she will be starting class if there aren't any major side effects from the Accutane therapy. This starts in a week or two, once the doctors figure out who's getting paid for what by the insurance company. HMO's - gotta love 'em (Actually, we do right now!).

It's funny - the first thing that Jessi asked for when she got home was Sammy, her snuggle cat (One of our 9-year-old litter mates). She now believes that Sammy, Roxy (Her other litter mate), Cloe (Our youngest cat), Isis and Osiris (Two incredibly goofy looking dogs), and both her snakes love her more now than before she left. Even little Osiris was showing more than his normal concern today when she was crying. He did everything he could to settle her down, but unfortunately, she didn't feel much like snuggling. Animals, I truly believe, are more in touch with our feelings than any of us understand. At least Sammy likes to snuggle, because she is the one who sleep with Jessi at night, all wrapped up like a teddy bear!

Anyhow, sorry for not mentioning any of this earlier, but the last couple of days have been hectic, trying to get these two troublemakers settled back in to the house. We'll let you know more about her Accutane treatments when we know more. Talk to y'all later!

Aaron

Sunday, September 23, 2001 at 10:56 PM (CDT)

Hey y'all! Jessi's party went off beautifully today. She had an absolute blast. In fact, she said that it was her "best day yet". She had a magician/balloon sculptor there, whom she is completely in love with (Note to suitors - she's getting finicky in her old age! Watch out!), as well as about twenty people. She even stayed outside the whole time, without any problems whatsoever! It's so nice to be getting back to almost-normal.

Denise and Jessi have probably another week or two down there, for follow-ups and other appointments, then it's home with her and the mama. Getting out of the hospital room and into the Village has had a dramatic effect on her morale - she's actually got her personality back! Yesterday was the first time that, all on her little lonesome, she hopped up out of her chair watching Scooby Doo and took a walk to the outside world. The mouth sores are even just about completely healed.

The next hurdle will be to get her started eating real food again. She's been getting baby food in through her G-tube, which she's been holding down along with her enteral feeding mix (Her favorite is steak and carrots so far). The only time she throws up now is when the mucous gags her and makes her panic and retch, but once the mouth sores are completely gone, that won't be an issue.

Well, that's about it from the world of the Jessi Bear. She is well on her way, and with any luck she and her mother will be home very soon! Hope so...I haven't had a homecooked meal in forever....Kidding, just kidding! As always, thanks for all of the support, and we'll talk to y'all later!

Daddy

Wednesday, September 19, 2001 at 03:52 PM (CDT)

Well, it's wednesday... and we are still in room 3016 on the third floor of the main bldg.
As long as everything stays as is, Dr Sweetman says we go to the village tomorrow morning! Cross your fingers!
Sunday at noon is Jessi's B-day party, as I said before... anyone up to the trek is invited, Just let me know so I can be prepared.
Talk to you all soon
Denise

Monday, September 17, 2001 at 06:30 PM (CDT)

Hello all!!!
Keep your fingers crossed... Dr Rosenthal says we can go to the Village on Wed if everything stays as it is now.
The thought/ hope is that maybe Jessi will perk up a bit if she gets a change of scenery.
This will be short, I seem to be in a bit of a funk myself today.... oh well, tomorrow is a new day... let's hope it brings a bit of happiness with it.
Love to you all
Denise

Thursday, September 13, 2001 at 09:40 PM (CDT)

Hello all!
Jessi is boasting a white count of 3.0 this morning, platelets are a bit low at 30... but they are hers and they are holding! Hemoglobin is hanging at 9.5.
We will NOT be going to the village this week, Jessi just isn't ready . The gastric tube feedings have been slowed down greatly, her little tummy just wasn't ready for the food yet, I guess.
In 11 days Jessi will be 6 years old, I am trying to arrange SOMETHING for her down here, if we get to the village we can go to Chuck E Cheese or something... if we are inpatient, we'll have to make do with the playroom.
Anyone Wanna come up for a party??? I'm thinkin' about Sunday the 23rd... let me know by email if you are interested in coming.
Jessi is seeing a therapist for depression, I don't think anyone can blame her. I think
everything is catching up with her...


Aaron has been very busy these days... We're not sure if they will let him come home from day to day, Y'all know how the Navy can be at times like these.

Thank you all for hanging in there with us... it sure is nice to know y'all are pulling for us!
Love
Denise

Sunday, September 09, 2001 at 06:43 PM (CDT)

Well, we're beating the blood cell thief, finally. Jessi's white cell count is hanging out right around 3.0, and the other important ones are pretty much stable. Doctor Rosenthal (The head cheese at Oncology / Bone Marrow Transplant) seems to think that she should be ready to go to the Village sometime around Wednesday. Sounds like a good plan to me!

Jessi had her gastric tube placed on Friday, which has been no fun for her whatsoever. For those unfamiliar with a G-tube, it's a tube about the thickness of a pencil that goes in just under her ribs and into her stomach. That way, they can feed her directly in through that, and give her medicine without having to fight with her about it. It, of course, hurts pretty badly, but unfortunately it's necessary until she is able to eat enough to keep her weight up and keep herself healthy.

Jessi is also, understandably, a little depressed, so the psych docs at the hospital are working on alleviating that. Hey, after being cooped up in a hospital room for 45 days, I'd be a bit depressed too! I think everything and everyone will be much happier once they're out of there and into the Village, where they can do some wandering and playing in the outside world. It'll be awhile until Jes is able to get out much, but at least she'll be in a different setting for once!

Okay, better go. Thanks, as always, for the support and tune in next time, okay? Talk to ya later!

Aaron

Wednesday, September 05, 2001 at 03:45 PM (CDT)

Well, we're now on day 435 (Okay, 34, but it seems like longer). Jessi's white count is hanging right around 1.3, and her platelets and red blood cell counts aren't doing too well. Her doctor is a little concerned about how long it's taking, but he seems to be chalking it up to how well the chemotherapy worked when we started all of this, and that her stem cells are "a little tired". Hopefully very soon things will take a sharp turn for the better, because if you ask me, they've been away from home from far too long!

Jessi is now taking Methadone to wean her off of the continuous morphine drip, and Megace to increase her appetite. The fun part is that they are both oral medications, and she doesn't much want to swallow anything. From what I've heard, the battles can be quite fierce. There is talk of surgically implanting a tube into her stomach to get some food in her belly, but that's, so far, up in the air.

She's still doing physical therapy, a necessary evil since she's been laying down for so long, and they make her get up and walk at least a little bit each day, along with a few other exercises, just to get her blood flowing along. This, again, can be a bit of a battle, but once she gets going, she does pretty well. And, to think...I've always been afraid of therapists...Oh, sorry. Wrong kind!

Anyhow, things just keep trucking along. The doctor is still hoping to move my girls into Hope Village sometime at the beginning of next week (I'm sure the insurance company would appreciate that!). Man...then I gotta clean the RV. Oh, well. Once she's in the Village, Jessi can start getting back into a normal lifestyle. She'll have one or two appointments a day, then she can play, mostly around the hospital grounds. Certainly better than being stuck in a little white room 24 hours a day! Gee, hers doesn't have the padded walls...

Okay, enough of trying to get in more trouble than I'm already in. I'll try to keep everyone posted on what's going on. Talk to y'all later!

Aaron

Tuesday, September 04, 2001 at 09:18 AM (CDT)

Good morning, everyone! Things seem to be pretty much stable on the homefront. Jessi's counts are bouncing around like a super ball, but at least she is producing her own white cells (Not many, but they're there), and her endoscopy last Thursday showed "erosion of the esophagus and intestines"...tell us something we didn't know. Ah, well. I guess the cultures came back negative (Unless something came up that I don't know about). Jessi is looking a little better each day, though, so things are going well.

It's official. Jessi is just a little people magnet. Everyone from the doctors to the cleaning staff have all fallen in love with her (as usual). Now she has two different hospitals under her little thumb. Gee, can't wait until she's a teenager! This should be interesting, to say the least.

Okay, well I best run along before I get in trouble. My editor gets nervous when I write too long of a note. As always, thanks for all of the support, and I'll talk to y'all later.

Daddy

Wednesday, August 29, 2001 at 11:52 AM (CDT) DAY +28 !!

Hello everyone...
Jessi is still feeling pretty poorly today, she gets some awful tummy cramps so she is getting a steady dose of Morphine to ease the pain. Another after effect of the Mucositis is that she is producing VERY thick saliva that attatches to her tongue and the roof of her mouth, when she sleeps it falls back into her throat and she chokes on it, NOT a great way to wake up.

Tomorrow morning at 8am jessi is going to have an Endoscopy (camera/light put down her throat to film from her throat all the way to the first three inches of her small intestine) They are thinking that the cramping is due to a sore that has become ulcerated... but it could be one of many things causing it.

I will keep you all updated (if not personally, Aaron will do it for me... he has been warned to keep his sick sense of humor to himself)
Love to you all,
Denise

Saturday, August 25, 2001 at 08:01 PM (CDT)

Well, it finally happened. Jessi has seen the light of day. Mama, Jessi, Michelle and I took a walk through the Japanese Garden and the Rose Gardens today, so everyone got some fresh air. It was a nice little change of pace for Mama and Jessi, who have been stuck inside for quite a while now.

Jessi is feeling a little better. She sure looks a whole lot better! Her counts are slowly dropping since they stopped the Neupogen, but everyone kind of expected that, so no big shocker. She still has a little bit of a sore mouth, and she is producing way too much really thick saliva, which has gagged her a couple of times, but we always seem to manage to get past it. Overall, she is well on her way to recovery; it's just a matter of time.

Well, just wanted to give evryone a quick update. I'll try to find a couple of good, recent pictures (Which I'm sure will get me in trouble, but such is life). Talk to y'all later!

Tuesday, August 21, 2001 at 08:55 AM (CDT)

Morning, everyone! Looks like things are moving right along, as we had hoped. Jessi's mouth looks a thousand percent better, and as of the time I left this morning, she hadn't had any episodes of diarrhea since about seven o'clock last night. She wasn't feeling too hot yesterday, so I decided to go down and stay the night. She actually asked to use the bedpan this morning, so that was a bit of a change (She's been going on an absorbent pad so she didn't have to move around a bunch).

As always, mama wanted to say thank you to everyone for their concern and support through all of this. It certainly hasn't been fun, but hopefully (Keep your fingers crossed) she will be feeling well enough to move around and play a little bit within the next couple of days, then we'll start getting back into the swing of things.

Once she's showing definitive signs of improvement, she'll move out of her hospital room and into Hope Village for a couple of weeks of outpatient appointments (That way she doesn't have to travel 200 miles each way to get seen). Her doctors are looking forward to this happening pretty soon, so we'll just have to wait and see what happens. Heck, she hasn't seen daylight since the 24th of July! Note to self - remember sunscreen!!!

Well, thanks again, everyone, for everything, and I will talk to you later!

Aaron

Sunday, August 19, 2001 at 06:33 PM (CDT)

Well, having spoken with my editor, a couple of comments that I made on the original draft of this entry were deemed unacceptable, as some people just don't get my sense of humour. So, this is the revised draft. Bad sense of humour my tail...

Things are moving along quite nicely (Finally!). Jessi's white count is up over 6 today, so this is a very good sign that her mouth sores should begin healing up fairly soon. The neupogen, which boosts stem and white cell production, has done very well, but at the expense of her red cells and platelets, which have decreased a little bit. Nothing too major, but it's something we have to keep our eye on. Today was the day of that, so everything should start to normalize in the next couple of days.

Jessi has entered one of the last destructive stages of the chemo, which means that she's sloughing off the lining of her gastrointestinal tract. She's been throwing up some, and has had a number of bouts of diarrhea, which could last as long as three or more days. Hopefully it's much sooner, because the only person there this entire week is her mama, and she's bound to get tired and cranky pretty quickly!

Jessi's mouth looks much better now, and it doesn't seem to hurt nearly as much. Dr. Sweetman dropped her morphine intake 20%, down to 0.8 milligrams an hour, plus 1 milligram an hour when she needs it, which hasn't been too often in the last couple of days. She's much more alert and "with it" when she's not high on morphine!

Anyhow, I just thought I'd let everyone in on our little Jessi Bear. Everything is looking up, so it shouldn't be too much longer until she's ready to move out of her bed and into the hallways for some visits with the other kids. After that, she'll be moving to Hope Village with her mama for a couple of weeks, or until the doctor thinks she's ready to come home.

I'll talk to everyone later!

Aaron

Wednesday, August 15, 2001 at 06:26 PM (CDT)

It's me again...
Sorry I haven't kept up like I wanted to, but the last few days have been a little (lot) stressful.
Today Jessi's white count hit 0.6 today! Not great by the general public's standard... but we'll take it. Her mouth is starting to heal, and her black eye is fading a little (she can almost open it now)
For those of you who can take it I will post a photo that I took today, it isn't pretty but I figure she wont look this bad tomorrow, and every day after that she will improve a bit more.
Tonite I have to leave to go home (this wil be the first time I have ever left her while in the hospital) I have a medical retirement hearing on thurs and fri and I will be back fri afternoon.
Grandma is on duty... Aunt Chele will join her Thurs nite. Jessi will be well taken care of... I will be a wreck!
I probably won't post again til I get back Fri....
Love
Denise

Sunday, August 12, 2001 at 10:09 PM (CDT)

Well, things are finally looking up in the world of blood counts. Jessi's red blood cell, hematocrit (The percentage of solids in her blood) and hemoglobin (The measure of oxygen carrying capability) counts all came up today, and her platelets stayed the same. Her white cell count is the last major thing we're looking for, but it's still not registering. That doesn't mean that it didn't rise, it just means that the tests don't show any improvement (They can only register a count of .2 or above).

Things have been a little stressful over the last few days. The lining of Jessi's mouth and throat have been sloughing off, so her mama, grandma, and Aunt Chele have all been there to make sure nothing untoward happens. She's choked a couple of times, and when she coughs up tissue, it bleeds a bit. At least now there is a ray of sunshine in that as her counts come up, all of this will gradually get better.

Unfortunately, I got stuck working this weekend (There's the Navy for ya!) so I wasn't able to be there, but I will probably take her mom back down after her hearings this week, so I'll be there next weekend. That is, unless old Uncle Sam has something else planned for me.

Okay, I'd better check out. We'll be keeping you posted as things run their course. Talk to y'all later!

Aaron

Sunday, August 12, 2001 at 10:09 PM (CDT)

Well, things are finally looking up in the world of blood counts. Jessi's red blood cell, hematocrit (The percentage of solids in her blood) and hemoglobin (The measure of oxygen carrying capability) counts all came up today, and her platelets stayed the same. Her white cell count is the last major thing we're looking for, but it's still not registering. That doesn't mean thatr it didn't rise, it just means that the tests don't show any improvement (They can only register a count of .2 or above).

Things have been a little stressful ovr the last few days. The lining of Jessi's mouth and throat have been sluoghing off, so her mama, grandma, and Aunt Chele have all been there to make sure nothing untoward happens. She's choked a couple of times, and when she coughs up tissue, it bleeds a bit. At least now there is a ray of sunshine in that as her counts come up, all of this will gradually get better.

Unfortuantely, I got stuck working this weekend (There's the Navy for ya!) so I wasn't able to be there, but I will probably take her mom back down after her hearings this week, so I'll be there next weekend. That is, unless old Uncle Sam has something else planned for me.

Okay, I'd better check out. We'll be keeping you posted as things run their course. Talk to y'all later!

Aaron

Tuesday, August 07, 2001 at 10:38 PM (CDT)

Hello and Greetings from the happiest place on earth!!! No, wait... that's Disneyland. Oh well, greetings from COH.
Last night Hank came down and spent the night with Jessi, Gave Momma some much needed R&R. (Jessi is on 24 hour watch because of the choking thing... not much resting goin on here!) He took off around 9:00 this morning to beat the traffic home. He got to do all the cool stuff that I take for granted... bedpan, emesis bucket..."sucky thing" (what the heck is the suctioner called???)
Today Jessi met Danielle, another NB patient at the Hospital. She is also inpatient and considered "clean sick" so no one panic about the lack of a mask (check out the photo!)
Today Jessi was awake for alot of the day, and for lack of a better way to describe it... she got her personality back, she did refrain from throwing stuffed animals at Nurses though.
Just a general warning... The reason that I have not been posting photos is because, frankly, Jessi looks like hell. I did not want anyone to worry needlessly... she is where she is supposed to be at this time and everything is normal. On that note I have a couple new pictures in her photo album... her mouth is swollen from the mucositis and her black eye and red eye are from rubbing and scratching when her platelets were low.
OH!!! Today Jessi got a bag of Aaron's platelets... Jessi thought it was sweet.

Love and kisses from COH
Denise

PS to all who have sent cards and packages; I fully intend to send thank you notes... as soon as I have a quiet time to do so. can we agree on, say... december?! (well, okay.sometime before that)

Sunday, August 05, 2001 at 11:49 PM (CDT)

Hello everyone,
Well, here we are... day +4!
Jessi is still throwing up the blood and mucous pretty regularly, but it seems to be improving (less blood more mucous) Someone has to stay up with her at all times right now as she has already choked once, and had quite a few close calls.
Jessi talks like a mobster... she sounds like she has cotton balls in her mouth, and a slight slur due to the pain meds. She has two black eyes (from scratching and rubbing with low platelets) and on her left eye she has blood on the white of her eye from scratching it.
All that sounds pretty awful, but her spirit is still the same Jessi we know and love. She is the strongest child I have ever known and she has even kept her sense of humor (for the most part, depending on the moment... throwing up she definately does not find amusing)
Jessi is quick to smile (if you can catch her awake) and NEVER complains.
Hank was able to come down on Thursday and spent the night in a local hotel so he could see Jessi on Friday also. Grandma, Aaron and I were able to leave the hospital and stock up on supplies for us and some stuff for some friends in Hope Village who couldn't venture into stores yet (counts... they rule our lives)
Aaron left this morning, he came out Thursday after work and stayed the weekend. Grandma will leave tomorrow morning... back to the coal mines for two whole days, then back down again.
Aunt Chele came Saturday and Sunday morning to help out... she learned the fine art of bedpans and how to deal with throwing up... way to go Chele!
Melissa spent Sunday afternoon with us, She would have been here Sunday morning.... but our ever punctual Missy slept in! It was great to see her and she brightened Jessi's day (the part she was awake for)
Hank will be coming back Monday afternoon, he's planning on pulling an all-nighter with the baby.

Thank you all for your thoughts and prayers
Love
Denise and Jessi
PS: Special note to Becki W from SB.... Jessi loved the package (she opened one eye and smiled.. her current version of a victory dance) and the picture is on her bulletin board.

Saturday, August 04, 2001 at 10:34 PM (CDT)

Hello all...
Well, today was a challenge for all;
Grandma was a Hero... Jessi and Grandma were in the room alone when Jessi choked on some of the mucous in her throat, Grandma acted quick and had her breathing right before the nurses could even get into the room.

Then I was in the room alone with the baby when she threw up 1 - 2 pints of blood and mucous (no exaggeration... it was that much, ask the nurses)

We are afraid to leave Aaron alone with the baby....

Today Aaron went to donate platelets to Jessi, they ended up taking two units of platelets AND a unit of blood... he has always been an overacheiver, NOT!

Aunt Chele came to visit today, it was nice to see her.

I know I am falling behind on updating the page, but I promise if anything big happens you will all know!

Love
Denise

Friday, August 03, 2001 at 08:30 PM (CDT)

Hello everyone....Grandma here. Nici is snuggling with the baby right now, so the update is all on my shoulders. We are on day 2. We have mucositis (mouth and throat sores)and it is very hard to swallow. Actually,Jessi will not swallow anything! Jessi has the skin discoloration and rash, but the smell is gone. Jessi's skin is very sensitive and she itches all over. She is now on continous morphine, with an extra push when she needs it. Jessi is just a little emotional and sensitive. Our Nurse Liza just arrived with that wonderful Benadryl! Jessi will sleep for a time now, which is good. Dr. Sweetman says Jessi is doing good,and that is encouraging because sometimes it just seems so hard. Denise is just amazing thru all this, she is very strong, a rock.... and Jessi is just so brave! I am very proud of both of them! Jessi's spirit really helps us all. She is one incredible little kid. Special note to Papa.....Jessi is having nightmares that Crockett's dish is empty. Please put food in Crockett's dish...... Tomorrow Denise will do this update, so it will be much more medically informative.......say a prayer for us.....
Goodnight all
Patti

Wednesday, August 01, 2001 at 02:06 PM (CDT)

Day 0 !!!
Jessi got her stem cells this morning, it was very anti climactic to say the least... it took less than two minutes. We are still waiting on the smell, I'm told that is an experience in and of itself (anything from garlic to fish I'm told) Pictures are posted in the photo album, I will add more when I know more or if something comes up.
Til then
Denise

Tuesday, July 31, 2001 at 06:09 PM (CDT)

Hello everyone...
Today jessi is feeling a little yucky. She has fevers off and on, and REALLY does not like mouth care!
Jessi's counts continue to drop (except for the hemoglobin... we had a transfusion yesterday)
not much to report, Jessi is not sleeping restfully... crying and fidjeting in her sleep, so she is drowsy most of the day.
I wish I could be more imaginative in writing this, but when the baby is up all night... so is the Mama.
Tomorrow is day 0. Stem cells will be infused in the morning. This is done through an IV, not surgically into the bone. I am told that the preservative has a very distinctive odor, they will be giving Jessi a cloth with peppermint extract to mask the smell as strong smells seem to make her sick.
I promise to write more tomorrow!
Love,
Denise

Sunday, July 29, 2001 at 09:10 PM (CDT)

Greetings from City of Hope!!
Well, it is day -3 and the going is getting a little rougher... Jessi is on day two of her hunger strike (a little humor there folks, very little) The only things that have crossed her lips are the mouth care drugs that she must swish and spit four times a day (no small feat) Twice she threw up right after, and then for good measure she threw up on Grandma for mentioning tylenol, it must have worked... she never took the tylenol.
Jessi has a bit of a fever today, she hit 101.5 (a magic number in the world of Oncology) they took cultures from her central lines and started her on broad spectrum antibiotics ( in the Fortaz family) as the cultures take 24 and 48 hours to grow (or not)
Aaron had to go home to get ready for work tomorrow, He came after work on Fri and helped out alot... Grandma is still here (when she comes she stays...just kidding)she has to go home tomorrow to work on Tues and Wed, then she comes back again. Aaron will be staying the night during the week periodically to help out when Grandma isn't here, and it even cuts his commute.
Melissa spent the day with us on Thurs prior to check in... we went to the mall and had lunch. She also helped us move Jessi into her new "apartment"... the help and company was greatly appreciated.

Jessi and her new friend Gregory have been playing in the mornings, doing lots of crafts... It is great to have someone here who is going through what Jessi is, it makes it easier for her.
Hank called today, he may come out tomorrow to see Jessi...

Thank you all again for the thoughts and prayers, we believe that they do help.
Love
Denise

Saturday, July 28, 2001 at 12:29 PM (CDT)

Hello all!
Here we are... day -4. We have one more day of Melfalan, and two more of carboplatin/Etopicide. Today is the first day that Jessi feels a little yucky.... not TOO bad, but not good enough to eat either.
Jessi has selected and suckered Mom into buying a Haloween costume.... it is the blue/purple monster from 'Monsters Inc' ( a soon to be released Disney movie) Check out the picture on the photo link (the top one) for a picture of Jessi and Dr Sweetman.
Talk to you all soon,
Love Denise,Aaron, Jessi and Grandma!

Thursday, July 26, 2001 at 08:47 PM (CDT)

Well, here we are... They started Jessi's chemo about 15 minutes ago, she is sleeping peacefully due to the benadryl they put in her IV.
She will be receiving VP-16 and Carboplatin 24 hrs a day for four days, normally she got them for 1 and 2 hours a day respectively, so this is going to be a rough one. She is also receiving another drug that is more hardcore than the others... it starts with an "M" (I think Melphalan?) it is given in a 30 minute IV push daily for four days.
Today is considered day -6, on day 0 she gets the stem cells and then we count up... we might be eligible to leave around day 35 or so...
Wish us luck, and keep us in your prayers...
Love to all
Denise and Jessi

Monday, July 23, 2001 at 11:41 AM (CDT)

Hello all,
Well, it's almost time to go... (I think I have said THAT one before)
Jessi, Grandma, Aaron and I will be heading down to City of Hope on Wednesday, our official check in date is Thursday... but maybe if we are already there they won't postpone us again!
We are going to be staying in an RV borrowed from family friends, The Cloonans. Hope Village has RV hookups available at somewhat reasonable rates (at least when compared to hotel rates)
Thursday nite will be my first 'progress report' entry... and I will post pictures of our room etc then.
Jessi had her friend Patricia over to play the other day, they had a blast!
Check out the photo page for pictures!

Talk to you all soon,
Love
Denise

Monday, July 16, 2001 at 02:41 PM (CDT)

Okay, as slowly as things are moving along, they just keep going. Jessi had a blast at the fair. I think her other suitors may have a new challenger with my little sister Elke's boyfriend Kenny. Looks like things are still on track for Thursday of next week. As much as I want to see this over and done with, I'm not looking forward to them being gone for six weeks!

Anyhow, I'm still trying to get used to the idea of having a daughter (Let alone a wife. Jessi has been doing incredibly well through all of this, and I know she'll do just fine at City of Hope (Just hope (Pardon the pun) that the walls and ceilings are all in one piece when she gets there!).

As always, thanks for all of the support, from around the world (Finland has it for the furthest away, now, I believe!). I can't begin to tell everyone how much it has meant to Jessi, Denise, and I. Have a good one, everyone, and the next message should come from within The walls of City of Hope
Aaron

Friday, July 13, 2001 at 09:17 AM (CDT)

Well, apparently we weren't meant to go to City of Hope next week after all. As we were sitting at Cottage Hospital getting a blood transfusion, Denise hears that the ceiling on COH's Pediatrics ward collapsed and we won't be going down until the 26th. Well, at least no one was injured.

Anyhow, that's all the news for now. Jessi's Aunt Elke is coming down to visit this weekend, and the Santa Barbara County Fair is going on up in Santa Maria, so we'll probably be spending some quality time with the sun, but thats about it. Thanks, everyone, for all the support, and I'll talk to y'all later!

Aaron

Saturday, July 07, 2001 at 02:55 PM (CDT)

Hello all!
Just checking in to let you know we are doing well today. Jessi's purple hair has settled down to a nice shade of blue, and she looks beautiful as always.
Not much to report... we are just getting packed and ready for City of Hope on the 18th, and trying to do as much fun stuff as possible before our 'imprisonment'(isolation).

I will keep you all updated,
Love Ya!
Denise

PS The PURPLE hair pictures are on the website photo page (not the link at the bottom)

Wednesday, July 04, 2001 at 11:26 PM (CDT)

Well, it's official. Jessi's shyness is just an act. We went to the SB Foresters game today, and Jessi sat in the dugout with all of the boys as their bat-girl, flirting and carrying on the entire time. She's doing absolutely awesome.

Tomorrow, she has a few more tests in the morning, then her and Mom are off to see the new movie "Cats & Dogs". Sounds like our household (3 to 2 in favor of the cats, but we're pretty sure the fish are with the dogs, and the snakes are playing Switzerland and remaining neutral!). Unfortunately, Dad's gotta work, otherwise I'd be going, too.

Speaking of which, Nici and I got married yesterday (Okay, it was a semi-spur of the moment ceremony at the courthouse, but at least we knew it was coming!), so Jessi is now officially my step-daughter. Gotta get used to this one!

Anyhow, we'll write more when we know more! Talk to everyone a little later.

Aaron

Monday, July 02, 2001 at 11:05 PM (CDT)

Just got back from the hospital - Denise was right. Jessi's platelet count was a whopping 7.0 Oh, dear. On a positive note, we played with Blitzen and Lulu, the therapy dogs and stopped by to drop stuff off for our Life Chronicles video for Jessi while she's trapped with the evil Momma at City of Hope. Now, after meeting another young lady, Jessi has decided to dye her hair purple. A rather vibrant shade of purple, in fact. Ah, well. Normalcy goes right out the window with cancer kids, doesn't it? Thank god I'm color blind. It'll all fall out within a couple of weeks on any account, but until then she won't be difficult to spot in a crowd!

As it stands, Jessi is feeling like a million bucks. She's pretty much bouncing off the walls in fact! Quite a little handful if I do say so myself. She had a blast at the hospital, playing with all the nurses, volunteers, and doggies (Blitzen the border collie and Lulu the bulldog).

Tomorrow morning she has another bone marrow biopsy, CAT scan, and GFR scan, then an EKG and ECG before heading off to Cottage for her mom's meeting on Thursday at City of Hope.

Well, good night to y'all and talk to ya later!

Aaron

P.S. - Denise and I are off to the courthouse tomorrow to hook up a marriage license. Soon....heheheheh

Friday, June 29, 2001 at 08:05 PM (CDT)

Hello friends and family.
As of Thursday Jessi's White blood cell counts are pretty low (below one). I have a feeling that we will be visiting the Hospital soon... she has a temp of 100.4 (when she hits 101.5 off we go!)
We have a tentative date of JULY 18th for transplant at City of Hope, the only thing that will delay us now is if we backslid during radiation...I doubt it)
Talk to you all soon,
Denise

Monday, June 25, 2001 at 10:02 PM (CDT)

Hello everyone...
Well, it looks like 2 1/2 weeks (give or take) til we head out to City of Hope. Now that it is getting closer I am anxious to get it done and over with! (but not actually too thrilled with the part that comes first) We should be meeting with Dr Calderwood in a week or so... sign the permission slips, take the tour of our new home... learn what 'low bacteria diet' means... Then, OFF WE GO!
Jessi is doing great at the moment... her counts sky rocketed to a whopping 3.4 (WBC) and 11.2 (hem) and 171,000 (platelets)
But the Doc said 'don't get too excited, they'll come down soon' (just a temporary jump before they bottom out)

Took Jessi to see Dr Doolittle2 this evening (hey! take advantage of those counts) She giggled thru the whole movie (even the parts she didn't understand, everyone else was laughing)

Check out the photo link at the bottom of the page... Jessi met the Santa Barbara Foresters (semi pro baseball team) Her child life specialist let her drive the jeep to the lobby...
Talk to you all soon,
Love
Denise

Wednesday, June 20, 2001 at 02:25 PM (CDT)

Hello...
Just a little update on the newest;
On Tuesday morning the audiologist came in and did a hearing test, (Cisplatin is hard on the high frequency hearing) Jessi's Hi Freq hearing had dropped some since her baseline (Feb 01) but not alarmingly so. Later in the day Jessi started complaining of ringing in her ears, We talked to Dr Hodder and decided to do the Cisplatin Tuesday nite and then re test hearing this morning. As of 10:00 this morning Jessi's HF hearing is down by 15% from yesterday, so we will be talking to Dr Hodder again today to see where we go now... our options; stop the cisplatin, switch to carboplatin or keep going. My whole view on this, in the scheme of things... a hearing aid is a small price to pay considering the alternative.
THIS JUST IN: We are stopping the Cisplatin... We should go home tomorrow after the VP16 tonite.

For those who wonder... High Frequency hearing is the ability to distinguish noises ... such as hearing one person talk in a noisy room ... easily corrected with hearing aids

Monday, June 18, 2001 at 02:33 PM (CDT)

Hello All!
We are at Cottage Hospital, We just checked in at 11:00 for round 5 of chemo... Cisplatin and VP16... the yucky ones!
So far so good, we will be updating daily while we are here (at least til friday) so check back for the latest news.
Today will be mostly hydration, if things go like last time... they won't start the meds til around 9 - 10pm (it only runs a few hours a day) Make sure you check the link at the bottom of the page... I will be posting new photos daily (love that digital camera!!!)
Talk to you all soon,
Denise

Tuesday, June 12, 2001 at 10:14 PM (CDT)

Hello everyone!
Jessi had a wonderful weekend... we went to see some family friends for a birthday party, and she got to hang out with her three blood donors (there are pictures from the party on the photo link at the bottom of the page)
Jessi's counts are still a little low, but they should be high enough to start chemo on Monday (we have to run labs on Friday to make sure)
Looks like the middle to end of July for City of Hope... Wish us luck! Unless something happens, I won't be updating until we go for chemo...I will be posting daily from the hospital next week, look for new entries in the evenings.
Love to you all
Denise

Friday, June 08, 2001 at 10:42 PM (CDT)

Just to let everyone know, Jessi had her last radiation appointment today - a week early. She still has her next round of chemo scheduled for the 18th of June, then we'll find out when her and mom go to L.A. for the stem cell transplant.

Looks like we made it through radiation pretty easy - no health problems to note, plus her counts are coming up - she looks and is acting really healthy!

Aaron - the stepdaddy
P.S. - note to Wes...remember, not until she's 20, or else!

Wednesday, May 30, 2001 at 10:07 AM (CDT)

Well, we have two more weeks of Radiation, then we report in for chemo on June 18th.
So far the only side effect we have from radiation is a drop in her white blood cell count, she is down to 1.8 (really really low for you non hospital personnell)
Jessi's spirits are high though... she is practically bouncing off the walls. Her favorite part of the day is going to Aunt Chele's work after Radiation... She gets absolutely spoiled there!

A special thanks to everyone who has been pulling for her.... We love you all
Nici

Saturday, May 26, 2001 at 01:10 PM (CDT)

Hello all,
Well, it finally happened... Jessi went out on her first date!
Larry (her future husband) asked us out to lunch yesterday.... Jessi asked me if SHE could just go... without me.
Oh well... it had to happen eventually.
PS at least we know that the RAD isn't making her sick, she went on her date right after.
Love you all....
Nici

NOTE TO WES,
Larry is one up on you... you'd better catch up!!

Thursday, May 24, 2001 at 10:17 PM (CDT)

Hello,
We have completed round two of radiation without mishap... so far so good.
Check out the photo link at the bottom of the page... I have added some pictures of Jessi's radiation machine...and some fun ones too!!!
Love you
Nici

Wednesday, May 23, 2001 at 08:10 PM (CDT)

Hello there...
Today was the first day of Radiation, so far so good. No nausea or anything!!!

Kinda anti climactic...I almost missed it (it only took 30 seconds)
We will be going every weekday until June 13th...
The rest we are kindof 'winging it'
Talk to you all soon,
Love
Nici

Friday, May 18, 2001 at 10:18 PM (CDT)

Greetings from beautiful Lompoc!!
Jessi got by without the tattoos today, it seems that her belly button and her scar line up perfectly... I will post the photo of it tomorrow...(they drew all over her!!)
We start Radiation on Wed, and then every weekday til June 13.
I heard a rumor that we MAY have a maintainance dose of chemo during Radiation... but we will definately have a round of it right after.
THEN we go to City of Hope (I think I have heard that one before) I guess that since she has been responding so well to chemo... their new goal is to send her to COH 100% cancer free. (not a bad deal)
OH Yeah... Aaron just got home from 5 days in the field at Fort Hunter Ligget (some people will do ANYTHING to get out of doing the hard stuff!) Just kidding Aaron, we know it was torture being away from us!!!!
Talk to you all soon,
Denise

Thursday, May 17, 2001 at 09:54 PM (CDT)

Hello everyone...
We went to Jessi's initial Radiation consult today, We start mapping tommorrow (figuring out where to point the dang thing)
Guess how they mark the spots? Yep...TATTOO.
(lil ones tho)
I believe that we will start the actual radiation by Wed of next week...Then every day for about four weeks (not including weekends)
Yep, we get to drive to SB for 5 min of radiation every day.
I guess we may have some nausea to look forward to... hope not.
Anyone who lives in SB and is home on the weekdays let me know...might as well go visiting while we are there.
Love Ya
Nici

Tuesday, May 15, 2001 at 11:37 PM (CDT)

O.K..... this is the deal so far,
On Thursday we go to the Santa Barbara Cancer Center for our initial radiation appointment. Jessi will be having radiation daily for four weeks (outpatient, we will be driving daily) followed by a final dose of chemo... THEN we go to City of Hope. (Dr's estimation...8 weeks from now)

Looks like we will be going into transplant with a clean slate... no detectable cancer
and after transplant...hopefully no future cancer.
Keep the prayers going... something is definately working!
Denise

Saturday, May 12, 2001 at 10:00 PM (CDT)

Hello everyone...
According to his nurse coordinator, Dr Calderwood should tell us SOMETHING on Monday.
I hear a rumor that she may be able to do her radiation in Santa Barbara... no promises.
I bought myself a Mother's Day present today... a digital camera. Just think, I can post new pictures daily without leaving Jessi's room.
Talk to you soon
Love
Nici

Thursday, May 10, 2001 at 10:05 PM (CDT)

The girls looked absolutely beautiful on TV last night - both times, for those of you who may have missed it. They even interviewed Jessi, who then proceeded to model for the cameraman...little camera hog. Anyhow, I thought my cameo made the whole thing!

Looks like it'll be Monday when we speak to the doctor down at City of Hope about what's going on from here on out. Unfortunately, I'll be at Fort Hunter Liggett up north when Denise finds out. Just my luck...field operations in the middle of all this. Who's I upset in my last life I wonder.

Okay, we'll say goodnight. Time for Jessi to have her central line flushed and go night-night. Nighty night!

Aaron

Tuesday, May 08, 2001 at 08:52 PM (CDT)

We just got back from the hospital where we had another CT and bone scan. Everything looks really good on those. We're just waiting for the official readings, then we'll know what our schedule is going to be.

Jessi had the final filming for her Life Chronicles video today as well, and KEYT news was there to do a story about it. My two women are now TV stars. Cutest little things!

As soon as we have the news, we'll let everyone know what's going to be going on - hopefully by Thursday.

Aaron

Thursday, May 03, 2001 at 11:06 PM (CDT)

Hello all...
We left the Hospital on Tues afternoon/evening, and we are now hanging out at home. Jessi is still not eating.. maybe a bite or two of yogurt now and then. She is on TPN (for you non hospital personnel... IV feeding) She is hooked up for 12 hours at night... and it actually seems to be putting weight on her!
As I said before... May 8th is our big testing day, and by the 10th we should be able to let you all know what is going on.
Thanks again for everything
Denise

Monday, April 30, 2001 at 09:50 PM (CDT)

Yep, we are still here.
Looks like maybe tomorrow....
Jessi is doing better, but she still cannot eat (without feeling very sick)
She has been reading to everyone who will stop to listen, and is improving at an alarming rate. (she read the word interrupted without blinking an eye)
Thank you for all your thoughts and prayers.
Love
Denise
PS Note to Wes:
Jessi says thank you for the angel, but she cannot marry you til she is at least ten, and then you have to compete with Larry from nuclear medicine.

Saturday, April 28, 2001 at 07:39 PM (CDT)

Looks like we'll be until at least Monday night. Jessi, when she's not sleeping, has been reading TO everyone who walks through the door. Are we sure that chemo doesn't add IQ points?

The doctors between here and LA are apparently arguing amongst themselves about surgery before her last round of chemo. Why can't everyone just get along? Everything will be solved on the 8th hopefully once we get our CT and Bone Scans done so we know if there's enough tumor mass there to bother with another surgery, or if we'll just do local radiation and the atomic chemo treatment.

Friday, April 27, 2001 at 10:24 AM (CDT)

well folks... we're back at the hospital.
We came back at 11:30 pm on Tuesday in such a hurry that I forgot to bring the computer!
Jessi has 'mucusitis' (I may have spelled that one wrong...) which is a common side effect of Chemo. It occurs when the protective layer of mucus that lines your mouth... all the way to your bottom... breaks down and lets acids through. Jessi has a sore in her esophagus (sp?) which prevents her from swallowing without great pain. She is currently on morphine every hour and a phentanil patch (more pain killers)
We cannot leave the hospital until the morphine is no longer needed... for some reason they don't want to send it home with me... and until her counts get higher...AND until we go 24 hours without a fever (she is 102.9 right now) so I am settling in for the weekend.
Oh, on May 8th we go for a CT Scan and a Bone scan... which will tell us when we leave for City of Hope... so don't forget to check back on the 9th or 10th...
Talk to you all soon....
Love Denise

Sunday, April 22, 2001 at 10:19 PM (CDT)

Hello all...
We got home from the hospital late Thursday night from chemo. So far so good... Some very minor nausea, but nothing we can't handle.
Jessi is trying to will her counts back up so that she can go to the spring arts festival this weekend here in Lompoc... we can only hope.
In about three weeks (get back to you later on the exact date) we will go back in for a CT Scan, bone scan and possibly another bone marrow biopsy... at that point we find out if we are in for one more round of chemo in SB or if Jessi and I pack up for our long stay at City of Hope right away.
It looks like we will be doing localized radiation on her left upper arm (one of our origional hot spots) and to her abdomen (gotta zap those lymph nodes). Neither of these spots are currently showing anything... but you can't be too careful.
Thank you for all the love and support
Denise and Jessi

Wednesday, April 18, 2001 at 12:40 PM (CDT)

Hello everyone...
We are in the hospital for Chemo... We started on Monday, and will wrap things up thursday nite around 8pm.
So far so good, just a little minor nausea.
This trip Jessi met some new friends; Randi and Maddie... It is always nice to meet kids that know what she is going through.
Also, Morgan came back today... Jessi and Morgan met last time we were here for chemo.
(Jessi has a little crush on Morgan...)
Talk to you all soon
Nici
PS I put a new picture in the photo album, you HAVE to check it out!

Friday, April 06, 2001 at 08:59 PM (CDT)

Hello...
Today we went to the hospital for a platelet transfusion, Jessi was pretty low and bruising like crazy!
We attended a party for Jessi's friend Abraham... celebrating his last chemo and the removing of his central line. We will continue to keep him in our prayers...hopefully he won't need to come back.
Right after that we attended a memorial service for Cole, Cole passed away last week after a long struggle with Leukemia. He was two years old.
Jessi wanted to speak at the service, but suddenly became shy and whispered in my ear so that I could speak for her.
So today we witnessed the worst and best case scenarios of cancer... and we appreciate your continued thoughts and prayers.
We love you all
Nici

Wednesday, April 04, 2001 at 02:30 PM (CDT)

Well, we got home safe and sound...
Jessi is doing very well today. Apparently we are still on for April 16th as our next chemo date... check in time is 11am.
Unless something different or unusual happens I probably won't be updating until then (the journal)
But I will be updating the pictures sometime this week.
Nici

Tuesday, April 03, 2001 at 08:02 PM (CDT)

Hello again everyone!
we are getting ready to come home as we speak... It seems that one day was enough to get plenty of stem cells... Yep, our Jessi is an overachiever.
We just got back from having the catheter removed from her groin... thanks to Verced she did great!
Anyway, we should be home before midnite tonite...
Love you all,
Nici

Tuesday, April 03, 2001 at 08:02 PM (CDT)

Hello again everyone!
we are getting ready to come home as we speak... It seems that one day was enough to get enough stem cells... Yep, our Jessi is an overacheiver.
We just got back from having the catheter removed from her groin... thanks to Verced she did great!
Anyway, we should be home before midnite tonite...
Love you all,
Nici

Monday, April 02, 2001 at 11:56 AM (CDT)

Good morning everyone!!
It is 10 am and we are already done with surgery... The phoresis line is in place.
Unfortunately it is a rigid line and goes from her right upper thigh into an artery in her groin... She cannot comfortably bend her leg.
Her white count was 3.7 today, not high enough to start the collection. We get blood drawn at 8am tomorrow to find out if we can start then.
(white count has to be at least 10)
We will be spending the day relaxing in our room watching TV... it is lightly raining here.
Thanks for your concern
Denise

Thursday, March 29, 2001 at 09:14 PM (CST)

Jessi was diagnosed with stage IV Neuroblastoma on Jan 24,2000
She had a tennis ball sized tumor in the adrenal gland on her right kidney,and 30-50% bone marrow involvement.
She had surgery on Jan31,2000 to remove the tumor. The tumor was successfully removed, leaving only adjacent lymph nodes which showed signs of involvement.
To date we have had three rounds of chemo which have been VERY successful, her bone marrow biopsy on 3-15-01 came back clear, and the lymph nodes have been "dramatically reduced" (the words of the radiologist).
On 4-2-01 We are going to City of Hope (Medical center) for stem cell collection, Jessi will be donating bone marrow to herself!!!
We are scheduled to return to Cottage Hospital on 4-16 for round four of chemo.

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