The Story: Aug 2000 - Oct 2000

10/28/2000:
Alyssa has been doing OK.  Everyone in the family seems to be struggling with at least a mild version of the same cold.  Even Alyssa.  Luckily (knock on wood) she has not had much of a fever and therefore has stayed out of the hospital.  They get real nervous when she has a fever and want her in the hospital so they can pump her full of drugs and keep a close eye on her.

We have started thinking about planning the Disney trip again.  We a re thinking about some time in Jan or Feb.  Alyssa is scheduled for her 8th (and hopefully final) Chemo treatment on Nov 7th.  A couple weeks after that she'll go through the battery of tests again, and then hopefully surgery sometime before Christmas.  We're hoping that surgery will be at least several weeks before Christmas so she can recover soon enough to really enjoy Christmas.  But there are many steps before then and we're just going to have to wait and see how things go.

10/16/2000:
Alyssa received a pretty amazing package in the mail a couple of days ago. It was from the "November Moms of 1997". They are a group of mothers from all over the world who met online during their pregnancies and have stayed together online ever since. Normally, the would hold a gift exchange between all of the children in the group. This year they decided to give a quote "meaningful gift to someone of similar age". They found out about Alyssa through the Make-A-Wish foundation and chose to give her a special gift. In the big package was a card and/or letter from each family. There were cards of all sorts: Homemade cards from the kids, specially matted family pictures. and on and on. Each and every card was filled with special words or support and prayer for Alyssa. They knew that Alyssa's Wish was to go to Disney World. Everyone was excited for her and wished her a great trip. Many of the children shared their experiences at Disney and said how much Alyssa was going to enjoy it.

It was very hard (OK..... impossible) to get through all of the cards without getting pretty choked up. It so wonderful to see and feel the support for Alyssa. And these are people we've never even met. Thanks very much to all of the "November Moms of 1997" families!!!!

10/5/2000:
A funny thing happened.  Denise forced me into getting a digital camera.  I finally agreed and have been playing around with it.  We’ve taken some test photos and posted them in the “New Picture Gallery”.  It’s pretty rough, but we’re still learning about the camera and how to publish the pictures.

10/2/2000:
We had a great weekend.  Denise got to spend some time away from the normal grind and went up to Traverse City for her Sorority’s annual convention.  She had a great time with the ladies (acting like little girls again).  Dad and the kids got to spend some quality time together as well.  On Saturday we went to the zoo and had a great time.  On Sunday, we had a special celebration at church with Alyssa and afterward went to dinner at Lisa’s house.

Once a year, our church celebrates the Sacrament of the Sick.  Over the past several weeks, they asked who would be interested in receiving the blessing and we signed up Alyssa.  I knew it would be a pretty nice experience, but I didn’t realize how powerful it would turn out to be.  It was great to feel the support of the church community.  Grandma & Grandpa Swanson and my sister Lisa also attended and helped us get through.  There were about 10 or 12 people receiving the sacrament at the 10AM mass alone.  Alyssa and I sat in the front row with the other participants so it would be easier for Father Kelly to get to everyone.  Alyssa had not been to church since she was diagnosed in May.  I was really worried how she would act – especially because we were in the front row, on display for everyone.  But she was absolutely great!  When we first arrived at church, I was beginning to reflect on why we were there, what it really meant, and how I wished we would have never had a reason to be there.  I was getting pretty choked up, but fought back those feelings and got to a point where I thought I would be able to make it through the mass without breaking down.  Well, we did pretty well until the actual ceremony began.  Father began talking about what the sacrament was all about and what it can mean to people – and then I started getting choked up again.  When Father came to Alyssa and anointed her with the holy oil and said some words of prayer for her, I totally lost it.  After Father had moved on, Alyssa heard me and saw that I was crying, then she got a confused looked on her faced and starting crying herself.  I motioned for Chelsea to come up from her pew with the intention of asking her to get us some tissues, but instead Alyssa wanted her to stay with her for a bit.  Alyssa asked for a hug from Chelsea and Chelsea gave her one of the most loving hugs you could give.  It was quite a site!  In fact some of the people sitting around us commented how cute they were.  Like I said, it was a pretty powerful experience.

Thanks to Debbie Miller from St. Thomas A’Becket for organizing the ceremony.  Father Kelly may be the Pastor, but Debbie is the one who seems to run the show and she does an excellent job.  And she’s a really nice person to top it off.  Thanks again.

PS. I think the Picture Gallery might start being updated more often.  I can’t say why I think this yet, but stay tuned……

9/26/200:
Same story as last time...  We haven’t been updating the site because things have been going well.  Alyssa has had 6 Chemo treatments now and we did get a bit of good news.  All along we have been under the impression that we should isolate Alyssa from other people as much as possible due to her reduced immune system.  As Denise was leaving the last Chemo treatment, she happened to mention that Alyssa was not attending Preschool because of her Chemo.  The Nurse looked very surprised and said that they encourage all their patients to continue normal school activities and attend class like all the other kids.  This helps the kids emotionally and the real risk of catching an infection from school is no worse than me bringing one home from work or Chelsea bringing one home from school.  So, Alyssa has begun attending Preschool with all her friends.  She loves it!

Alyssa has been basically bald for some time now, but not the chrome dome (completely – shiny bald) we expected.  In fact, it looks like her hair is starting to grow back!  She has a bunch of peach-fuzz starting to show up all over her head and she’s still going through Chemo.  Pretty weird!  She still loves her bald head and is very excited about her hats and getting to buy news ones all the time.

PS.  I haven’t updated the Picture Gallery much.  We have a scanner we can use to scan in regular photos, but I’ve been telling Denise it would be much easier if we had a digital camera.  That way I could immediately upload the pictures to the web site.  I’ve had my eye on one camera in particular for some time now, but Denise still isn’t convinced it’s worth it.  The next time you talk to Denise, put in a good word for the digital camera!  If you don’t, I just might have to start charging you a fee to access this site J

PPS. The Red Cross blood supplies are once again critically low!!!  Alyssa is a real life example of someone who is dependent on the generosity of others to donate their blood.  I’m donating again on the 26^th.  Please schedule your appointment as well.  It’s practically painless and the life you save could be Alyssa’s.

9/12/200:
It’s been a while since we’ve made any updates to this page.  That’s because things have been going pretty well.  {knock on wood}  Alyssa has been handling this treatment just as well as the previous.  So much so, that she’s been able to spend a lot of time being a normal three year old (playing a lot outside, getting huge mosquito bites, falling down and getting a big bump on the top of her head, playing with her friends, running around the house and tripping forehead-first into the corner of the wall getting another huge bump and an ugly bruise, eating a lot, and generally being silly).  Her hair is practically all gone now.  She’s pretty happy about that and wondering why some of it is still there.  It’s pretty obvious now when you look at her without a hat and she has started getting the “stares” from others in public.  I thought this would bother me more than it does.  I used to hate it when people would look at us in Church if the kids fussed at all.  I didn’t think I’d be able to handle the Chemo related stares.  Alyssa’s attitude has probably helped us deal with her situation more than anything.

We thought Alyssa was going to have to give up going to Preschool.  She was very excited about starting school like her big sister.  We originally thought she would be done with Chemo by now and that she would only miss the first week or two of Preschool.  Then we got the news that she needed 12 more weeks of Chemo and we thought that would eliminate any chance of Preschool – too many germs for her.  We talked to her teacher (Mrs. Bulmer) and asked if she could at least come to see the classroom once while no one else was there.  Not only did she agree, but she insisted that Alyssa remain a member of the class.  Her teacher has been sending her schoolwork home and mentions her in class just like the other kids.  Alyssa seems to be enjoying “school” and is very excited when she gets her homework.  A big thanks goes out to Mrs. Bulmer and everyone who have done so many things to help Alyssa!

8/29/2000:
Alyssa started her 5^th Chemo treatment this week.  This treatment is one of the ones that is given over a period of three days.  She’s still in great spirits.  If fact the nurses call the Chemo her ‘peppy juice’ because she is usually the life of the party in the Chemo treatment area.  She was entertaining everyone today with her renditions of songs from Britany Spears.  She knows most of the words and does a pretty darn good job.

8/24/2000:
Well…  The Doctor called today and let us know the next steps.  They want to do 12 more weeks of Chemo.  Not the answer we were hoping for.  They think it will be the best, lowest risk approach.  The Chemo will basically be the same as last time.  She’s handled it pretty well so far, so we shouldn’t expect much difference this time.  The reason they want to do more Chemo before surgery is to give Chemo every chance to kill ALL the cancer.  If she had surgery now, there would still be a chance they would see something in the removed tissue that would make them decide to do more Chemo and then a second resection (surgery).  So instead of taking a chance of two surgeries, they want more Chemo with hopefully only one surgery.
We were really hoping to be done with this and were hoping to get to Disney World in November.  Oh well.  The Disney trip is still not totally out of the question, but pretty marginal.  The most important thing is that Alyssa get treated in the best possible way.

8/23/2000:
Still no word from the Doctor on what the next steps will be.  They have her in a “holding pattern” (to use their words) until they hear from the Nation Committee.  I suppose this shouldn’t other us, but it is getting a little nerve racking waiting to hear the news.

8/21/2000:
Alyssa had her Doctor’s appointment today.  This was a regular check-up and the Doctor wanted to let us know about the test results and what the next steps are going to be.  The MIBG and PET scan test results were still positive and showed a mass just about the same size as in May.  This means that the scan showed a tumor that is still alive and has not been reduced in size since the beginning of her Chemo.  This is not the news we were hoping for.  However, this is not necessarily bad news.  Her tumor consists of two types of cancer cells: GanglioNeuroBlastoma and NeuroBlastoma.  The NeuroBlastoma cells are the bad ones – they expand quickly and like to invade other parts of the body (not good).  The Ganglio cells are not as bad.  They usually grow for a while and then stop leaving another organ-like piece of tissue in the body that’s usually OK.  The Doctor said that there are cases where they have found old Ganglio tumors in teenagers that have been there since they were young like Alyssa.  In these cases they just leave they tumor alone and monitor it once and awhile to make sure it doesn’t start growing again.  
Alyssa’s Chemo treatment was targeted to attack the NeuroBlastoma, not necessarily the Ganglio.  Although in many cases the Ganglio is reduced or killed as a result of Chemo.  Because her Ganglio is still alive, it’s very hard for the Doctors to tell if the NeuroBlastoma has all been killed.  They feel that it is very likely that the Chemo has killed the Neuro, but they just can’t be sure.
The Doctors at U of M have asked the opinion of the International Cancer Treatment group and are waiting to here from them.  The U of M Doctors want to proceed with Resection (surgery) to remove all they can and then test the removed tissue to see if there are any Neuro cells still there.  The Surgeons have reviewed her results and have concluded that no matter what, they cannot remove the entire tumor because of where some of it is positioned – it would be too risky to other critical organs to try to remove all of it.  But that’s OK, as long as what can’t be removed is just Ganglio.  Unfortunately there is no way to know for sure.  We’ll just have to keep getting her tested to see if it starts to grow again.
The Doctor expects to get back with us by tomorrow.  From there we’ll either schedule surgery of maybe more Chemo.  If it’s surgery, that might be as soon as a week or two.  Stay tuned….

8/15/2000:
Alyssa has just been through a series of post-Chemo (keep your fingers crossed on the post part) tests.  She had a CT Scan (CAT Scan) on Wed, EKG and an MIBG Test Part I on Tue, MIBG Test Part II on Wed, and a PET Scan on Monday of this week.  The hardest part of all these tests for her (and us) was preparing for the tests.  Because she had to be put under sedation or general anesthesia for all of the tests, she couldn’t eat or drink for several hours before the tests.  Each morning should couldn’t eat anything past Midnight (sometimes 8AM) or drink anything past 10AM.  The tests were scheduled to start either 10AM or 1PM depending on the test.  More often than not, the doctors were running ‘a little behind’ and the tests generally started about an hour late.  Alyssa got very hungry and thirsty while waiting, but did pretty good.  Unfortunately she would hit a wall usually about 15 minutes before the test time and throw a fit.  She just couldn’t take it any more.  Fortunately, when the test finally started, they would inject her IV with the anesthetic and within 2 seconds she was out! 
The tests lasted anywhere from an hour to 3 hours.  She was a little groggy waking up after the tests, but soon was asking for fries and dip (french fries and ketchup).  We’d head down to the hospital Wendy’s and have fries, dip, and a frosty.  Excellent anesthesia recovery food!
The only results we have so far from the tests are from the EKG.  The technician said everything looked normal.  One of the risks of Chemo is heart damage.  The rest of the test results will have to wait until her Doctor gets back from vacation on Monday.  He and the other doctors will review the results and decide what to do next.  Hopefully no further Chemo will be required and she will soon be scheduled for a resection surgery (remove the tumor).  The Doctors said she will probably need to stay in the hospital about two days after the surgery recovering.  He said that if an adult were undergoing this same procedure, they would require 3-4 weeks of recovery.
We’ll let you know more as we hear more….

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