3/27/2001:
We finally uploaded the Hospital Picture Gallery.  I ran out of web space on our primary internet site, so I had to sign up for some "free" space on GeoCities.  The GeoCities site has advertising and is much slower.  To scroll through the picture, click on the arrows next to the small pictures.  When you see a small picture you like, click on it and a large version of it will be displayed.  Let me know what you think.

3/26/2001:
We are all trying hard to get things back to normal around here.  It must be working, because there's not much to write about.

On Thursday, Denise had her Sorority group over our house for a meeting.  So, the girls and I used that as an excuse to go to Chuck E. Cheese for dinner.  This was Alyssa's first time to Chuck's since she started Chemo about a year ago (throughout Chemo we tried to keep her away from germie places).  She was really happy to be able to go and had a blast.  She ran around, played a lot of games, ate a ton of pizza, and swam forever in the ball pit.  She could have spent another hour or two in the ball pit.  She was jumping and diving into the balls just like she didn't still have a healing wound on her belly.  Other kids (her size) were jumping around her and landing on her at times.  I cringed every time someone went near her.  But she was having a great time.  In the end everything turned out wonderful - nothing to worry about.

Saturday afternoon, we went to the Fun Fest at Chelsea's school.  We all had fun.  Denise worked the "knock the cans down with a ball" game in Chelsea's classroom and I worked in the MASH unit administering bandages of all kinds (fake blood included).   Saturday evening we went to a friends new house with two other couples.  The kids loved it because they had a party of their own in the basement.  Eight kids, one boom box, 100 CDs, a pool table, Nintendo 64, a strobe light, and an endless supply of snacks - what more could you ask for?

Chelsea's Poetry Assembly was today.  She and her friend recited a poem from memory in front of the rest of the students and their parents.  She was very proud of herself.   Good job Chelsea!

3/21/2001:
Alyssa had several appointments yesterday at the hospital.  The main item on the ToDo list for the day was a Bone Scan.  The Bone Scan requires an injection of a dye of some kind followed up with a scan in the Radiology department.  She had to be at the hospital at 10:30 for the injection.  Unfortunately, it seemed like the Nurse giving her the injection was not very experienced.  She had to poke Alyssa FOUR times before she finally found a vain.  Only Denise could go in the injection room with her.  I stayed in the waiting room.  It was supposed to be a quick poke and then done.  All I could hear was terrible screams, then more, then still more.  I wanted to storm in there so bad, but knew that would probably do no good.  Finally it was over.

Next, it was on to the Surgeon's office for a checkup with him.  He looked at her incision and thought it was healing very well.  We thought so, but it was nice to hear from him.   He thought there would be no medical reason why she shouldn't be able to go to Disney in May.  He also said the incision would probably be completely healed by then.  That would be nice.

Then it was on to Pre-Op to prepare for the Bone Scan.  She needs to go under anesthesia for the scan.  The scan went as expected and we saw her again in the recovery room in about an hour and a half.  Things were great until we kind of urged her to wake up.   Then the madness started.  She woke into a anesthesia induced rage and there was nothing we could do to make her happy or calm her in the least.  Unfortunately, we were late for her appointment with the Oncologist, so we left.  To say the least, the trip from there to the other side of the hospital was not a pleasant (or quiet) one!

Once at the Cancer Center reception area, the nurses noticed Alyssa's "distress" (it was hard to miss) and quickly ushered her into room.  The squeaky wheel DOES get the grease.  Once in the room, Alyssa burst out of Denise's arms and crawled to the corner of the room behind the exam table, all the while screaming out curses we could barely understand.  When the Doctor arrived, he quickly realized there was nothing he could do to help, so we all decided just to pretend she was not there.  After a while, Alyssa realized we were not going to bug her and she began a slow process of coming down from her drug rage.

Over Alyssa's occasional yells and screams, the Doctor filled us in on where they were as far as her cancer treatment.  The big news from surgery and biopsy was that, to everyone's surprise, the tumor had not responded to the Chemo and it was still 'bad stuff'.  After her original biopsy in May 2000, they diagnosed her with GanglioNeuroBlastoma, which meant that she had both NeuroBlastoma cells (bad active cancer) and GanglioNeuroma cells (benign).  Her Chemo treatments were supposed to kill all of the NeuroBlastoma cells and leave just GanglioNeuroma cells behind.  When they got the results from her most recent biopsy, the whole team at U of M was surprised.   After much review, the team decided to consult the international committee, specifically THE Oncologist who developed the present day NeuroBlastoma Classification System.  They wanted to know what he thought of her original and recent biopsy results.  After reviewing the results, he understood the initial diagnosis, but said that both the initial results and the most recent results probably should have been classified as "NeuroBlastoma with Differentiation".  This is a lot of big words that basically means "mostly NeuroBlastoma with some cells that are beginning to develop into GanglioNeuroBlastoma".

Whatever the explanation, Alyssa is where she is.  She is recovering well from her surgery and there is a good chance that she is Cancer free.  Cross your fingers, because we still need to see the results from yesterday's Bone Scan and the MIBG test in early April.   She will be monitored closely for the first year.  Check ups every month and scans about every three months.  The Doctor says the close monitoring is because relapses have the greatest probability in the first year after surgery.  He said this usually makes the first year pretty nerve racking, but the good news is that the farther out you get, the better and better your odds.

3/15/2001:
Not too much new to report.  That's a good thing because things have started to get back to something close to normal.  Alyssa's open incision is really healing well.  It's amazing how small it is getting - it's about the size of your index finger now.  She has been taking two showers a day to keep it clean and healthy.   She seems to enjoy the extra play time in the shower.  She's also doing pretty well with the dressing changes.  She still doesn't like them very much, but she doesn't scream and carry on like she did at first.

Over the past week, all the women in the house have been passing a cold on to one another.   Chelsea started a week ago with a headache and swollen glands.  Denise and Alyssa followed a couple days later with the standard runny nose, watery eyes, and a cough.  Chelsea's been well for several days.  Denise and Alyssa are on their way back to health as well.  I'm just waiting for my turn in the bucket.

We have a bunch of pictures from the hospital adventure that I keep meaning to post on the web site.  However, every time I sit down in front of the computer, I remember that I need to finish up our taxes and send them in.  I quickly get discouraged and find something else to do.  Some day soon I'll get the taxes out of the way and then move on to the pictures....

3/6/2001:
It's been quite some time since the last real update.  No excuse - just taking a breather for a while after getting home from the hospital. 

In short, Alyssa is doing pretty well.  The Doctors said she could go home on Feb 23rd even though she still had diarrhea, wasn't eating very well, and her incision wasn't healed.  Coming home has been the best medicine yet.  Her attitude has really improved.  She's running around (literally), playing (and arguing) with Chelsea, playing with her toys, and frequently inviting her friends over to play.  There's no place like home.

Because she wasn't eating very well, the Doctors sent her home with IV nutrition.  She needed to be hooked up to the IV each night for 12 hours.  This was kind of complicated - you have to store the IV bags in the frig until 12 hours before you need them, mix in some additives right before you hook her up, prepare the IV line, setup the battery operated pump, hook her up, test her urine 3 hours after being hooked up, test her urine 2 hours after being unhooked, etc....  A nurse came out to the house and showed us the procedure.  After a couple tries, Denise had it down pat.  Good thing, because I was lost!  Alyssa's appetite started coming back later in the week.  By Friday (March 2nd), the doctors said we could stop the IV nutrition.  She has about 80% of her normal appetite back.  Unfortunately, just when she gets going into a snack or meal, she starts to cramp up - the diarrhea problem.

She has basically had diarrhea since her surgery.  She didn't have any 'movements' for about a week after surgery, which is very normal.  It's also normal to have diarrhea for a number of days after a surgery.  Unfortunately, Alyssa's has not gone away yet.   The Doctors just keep saying "Oh that's not too surprising; she's had a very big operation".  They have told us to treat it symptomatically by giving her Kaopectate & Imodium and eating a lot of bananas and other similar types of foods.   Sometimes it's hard for her to get interested in eating.  I'm sure she knows that about 15 minutes after she eats, she's going to have to go to the bathroom.   Some of these episodes can be pretty 'violent'.  The goods news is that their frequency has dropped of a little over the past several weeks.  She only has to go about 5 times a day - still a lot, but not every hour like it used to be.

Her incision is healing very well.  When she came home, the open wound was about 6 or 7 inches long (from her belly button to her chest), about 1 1/2 inches wide, and about 1/2 inch deep.  The doctors and nurses told us that we would be surprised how quickly it would close up.  We took their word for it but didn't really believe them.   Turns out that they were right.  We have to change her dressing at least once a day and every day we notice that it has gotten smaller in some way.  Today the open wound is about 4 inches long, 5/8 inch wide, and about 1/8 deep.  Dressing changing time is still not a very pleasant time for her, but she is getting used to it and not fussing too much.  On Sunday, it didn't look as good as we thought it had been and she had a fever just under 100 deg.  We thought for sure it was infected.  The visiting nurse came out Monday morning for her usual visit and also thought it it might be infected.  Luckily Alyssa's first return visit to the Doctors was scheduled for Tues (today).

Alyssa's appointment was 9AM this morning.  Surprisingly, we didn't have to wait very long.   The nurse came in and asked how things were going; we filled her in; and then she removed Alyssa's dressing.  It looked very good to us and the nurse.  Soon after, the Doctor came in and examined the incision.  He also thought it looked very good and felt very confident that it was not infected.  He recommended that she take showers twice a day without a dressing to help keep the incision clean and stimulate it's healing process.  We asked him about her continuing diarrhea and he did not seem surprised and definitely was not alarmed.  He again state that she "had a very big operation and that it may take a while for the intestines to fully recover."   He went on to explain that many of the nerves that were connected to the intestines ran through the tumor and were removed (unintentionally, but unavoidably) when the tumor was removed.  The nerves will not repair themselves or grow back - the intestines are just going to learn how to function without those nerves.  This process is going to take some time.  For now, we are just going to continue to treat the diarrhea symptoms and see how things go.

Up until now, Alyssa could do whatever activity she felt comfortable doing, but has been restricted to the number of people she could come in contact with.  Basically, no going to school, the store, etc...  Today, the Doctor said there is no longer any need for restrictions.  She can do what she likes and go where ever she likes - within reason.   We are still going to be extra careful about exposing her to 'sickies', but we are basically back to normal activity.

We had a little fun today while we were in the doctor's exam room.  After the doctor was done with us, it was basically up to us to put on a new dressing.  The nurse came in with a handful of stuff, asked if we needed anything else, then left.  Denise and I gave each other a surprised look and then got to the business of the dressing.  We had several supplies left over and had some time to play with them a bit.  The first part of the dressing is to pack a damp gauze pad in the open area of the incision.  You dampen the gauze with regular saline solution.  At home we have a large bottle of saline.  In the exam room they gave us several small one-time use containers.   They looked like a half size version of those plastic kid's juice squeeze bottles - the ones where you twist the top until it breaks off and then the kids can squirt the juice into their mouth.  Well, we had several of these saline packets left over.   We quickly discovered that they were also excellent one-time use squirt guns.   I'm sure there were several people in nearby exam rooms wondering if we were completely nuts.

2/23/2001:
Alyssa is Home!!!

2/15/2001:
The Docs changed Alyssa's open wound dressing today for the first time in her room.   (They changed it Wednesday in the OR when she was under anesthesia, so she didn't feel it and we didn't see it)  Needless to say it was gross!  'nuff said.   She didn't like it, but the Docs said it looks good so far.

On a brighter note, Grandpa came by today with a burrito from Taco Bell (A plain been burrito without onions!).  She was really craving her favorite food.  She loved it and tore right in.  This was the first real appetite she's had in several days.   Compared to yesterday, today was a pretty good day.  Hopefully each day will be a little better than the previous.

Even though she might be home from the hospital in about 2 weeks, we're starting to hear that it may take 2 months or more for the wound to completely heal.  That means the re-re-re-scheduled Disney trip in May might not work out either.  Oh well, we're getting pretty good at rescheduling......

2/13/2001:
It's amazing how quickly things can change.  Since the last update, Alyssa had been slowly recovering.  She was struggling with persistent diarrhea and fevers, but she seemed to be getting a little better every day.  Then she hit a couple bumps in the road.

Road Bump #1:  Three or four days after the surgery, the initial pathology results from the removed tumor came back.  Everyone fully expected the pathology to indicate that the tumor consisted only of "not so bad stuff". {Alyssa's tumor was thought to be composed of two types of cells - bad and not so bad}.  Unfortunately, the results showed that it consisted of bad cancer cells.  This means the Chemo didn't really do it's job - it was supposed to kill all the bad stuff.  However, this doesn't really changed the next steps.  She will need to come back every three months for CAT scans to be sure the tumor is not regrowing.  If it doesn't she will not need any further treatment.  The news that the tumor was still "bad" makes us even more grateful that they were able to remove the whole tumor.

Road Bump #2: Mid last week the Doctors did a number of tests to try to determine the exact cause of the fevers.  Long story short, they discovered that her spleen had failed.   It appears that the blood flow to her spleen was greatly reduced and as a result she appears to have lost her spleen function permanently.  There are a number of theories why this could have happened.  They all are based on the fact that many of her organs and veins were pushed around a lot during surgery and were irritated.   This included the spleen and the veins that feed it.  Most likely, the veins to the spleen either clotted or collapsed due to the stress.  The good news is that you can live without a spleen.  However, the spleen helps fight of certain types of infections.  Therefore, Alyssa will need to be given antibiotics twice a day for at least the rest of her childhood and will need to get more vaccinations than the average person.

Road Bump #3: Yesterday, I went to work and checked in with Denise about 2PM.  Alyssa was not having as good a day as she had had the day before. She seemed to be in more discomfort and the incision looked more red and puffy. Later the Docs came into look at it and they said it was probably collecting fluid and might be infected. They planned to take her down to the OR later in the evening for a simple procedure involving using a needle to remove the excess fluid.  I got to the hospital about 6:30PM last night. They still had not been able to take her down to the OR. About an hour later we noticed that the incision was starting to leak fluid. Within 10 minutes, fluid was not leaking, but flowing. The Docs looked at her again and said that they were going to have to reopen the incision and investigate. They were finally able to take her down to the OR about 10PM. They ended up opening the incision and found a lot of fluid and that the internal muscle layer was not completely closed - which it should have been. To let her wound drain, they gave her an open/packed dressing. Basically the incision is still open, but packed with gauze. The idea is that this will allow the fluid to drain and the wound will (slowly) heal itself from the inside out. Unfortunately, the dressing changes will be painful for her because of the exposed tissue. The Docs said to use 2 more weeks in the hospital for planning purposes - maybe more, maybe less. Yesterday, I went to work and checked in with Denise about 2PM.  Alyssa was not having as good a day as she had had the day before. She seemed to be in more discomfort and the incision looked more red and puffy. Later the Docs came into look at it and they said it was probably collecting fluid and might be infected. They planned to take her down to the OR later in the evening for a simple procedure involving using a needle to remove the excess fluid.  I got to the hospital about 6:30PM last night. They still had not been able to take her down to the OR. About an hour later we noticed that the incision was starting to leak fluid. Within 10 minutes, fluid was not leaking, but flowing. The Docs looked at her again and said that they were going to have to reopen the incision and investigate. They were finally able to take her down to the OR about 10PM. They ended up opening the incision and found a lot of fluid and that the internal muscle layer was not completely closed - which it should have been. To let her wound drain, they gave her an open/packed dressing. Basically the incision is still open, but packed with gauze. The idea is that this will allow the fluid to drain and the wound will (slowly) heal itself from the inside out. Unfortunately, the dressing changes will be painful for her because of the exposed tissue. The Docs said to use 2 more weeks in the hospital for planning purposes - maybe more, maybe less.

Although these things were unexpected and not very pleasant, the Doctors say that she is still doing pretty well given the huge surgery she went through.  They also said that given the magnitude of the surgery, there is significant risk for things like this happening.  Fortunately, none of these road bumps have been too serious so far.

2/4/2001:
Now we have a bit more time and can provide a bit more detail on Alyssa's surgery.

We were asked to have Alyssa at the hospital at 8:30AM Wednesday, Jan 31st.  They usually want us there an hour early, so that meant surgery was probably scheduled for 9:30.  In preparation, she couldn't have anything to eat after midnight the night before and then only water to drink until 6:30AM - nothing to eat or drink after 6:30.   She woke up that morning in a good mood and seemed mentally prepared for the big day.  She handled the fasting very well and really didn't complain at all even though surgery was delayed a little.

They took her into surgery about 10:45.  The Doctors said that only one person could go back with her and then would have to leave after she was asleep.  We asked her if she wanted Mommy or Daddy to go back with her and she answered "Aunt Lisa!".   (Mom, Dad, Chelsea, Aunt Lisa and Grandma & Grandpa Swanson were there to see her of to surgery).  She was a little sad when they took her back into the room, but she did great.

Then it was a lot of waiting.....and then more waiting.  The hospital has a nice waiting room with plenty of room.  There is also a host that tries to get a status update every hour or hour and a half.  They came out several times and told us things were going well and Alyssa was doing fine.  About 3 hours or so in, they came out and said that things were still going well, but that it was going to be a while longer.  The surgery ended up lasting about 6 hours.  When the surgery was complete, the head surgeon came out and told us "things went very well and we got it all".  We were all pretty surprise because all along they had told us that it was very unlikely Alyssa's tumor would ever be completely removed.  The surgeon told us that this was his hardest surgery he's done in his 35 years.  He said they just stuck with it, were stubborn and removed the whole tumor.  Thank God!

It took them about another hour or so to stitch everything back together and transport her to the recovery room.  It was another 45 minutes or so before we could go back and see her.   She wasn't awake when we went back to see her - the morphine kept her asleep for quite some time.  She spent about a day and a half in the Pediatric Intensive Care Unit just so they could watch her closely and make sure she was beginning to recover OK.   Friday they moved her to a normal hospital room on the 7th floor where she's been in the past.

The Doctors say she is recovering very well given what a big surgery she just went through.   They said her liver and pancreas would probably be irritated for a while because they really had to manipulate those organs a lot to get to the tumor. Several of her tests showed that her liver was initially not functioning very well, but the test results have drastically improved over the last day or two.  She is still very swollen and retaining a lot of fluid - normal after surgery.  She almost looks like a different person.  However, in the last 24 hours, a lot of the fluid is beginning to drain and her face isn't so swollen.  The first couple of days she could only open her eyes about 1/8 inch.  Today they are almost all the way open.  She still can't have anything to eat or drink yet.  The Docs say once they start hearing some toots (passing gas), she can begin drinking.  Unfortunately, she is mentally very ready for food.  She keeps asking for something to eat.  {It was kind of funny: she hasn't really been talking much, but when she saw Denise trying to sneak some lunch in the room for herself, Alyssa really read her the riot act. "It's not fair!  You can eat, but I can't!  I want to have some food!"  We felt very guilty and at the same time had trouble holding back a little chuckle}

We don't know when she might be coming home.  The docs are just going day by day.  The soonest we think we could come home is Wednesday, but I wouldn't be surprised if she's there 'till the weekend.

Thank you to everyone for your prayers.  They definitely worked.  The Pastor from her Pre-School lightened things up a bit when he said 'God heard everyone prayers and that's probably why the surgery was delayed, He was looking for a day when the surgeon was sober'.  Whatever the case, we thank God for a successful surgery and everyone else for their prayers and support.

2/1/2001:
Only have time for a quick update, so here it is:
Alyssa's surgery was a big success.  It took them 6 hours, but they think they got it ALL.  Since the beginning they have been telling us they would not be able to remove all of the tumor.   The Surgeon said it was the hardest one he's done in 36 years, but he stuck with it and got it all.  Alyssa is doing as well as can be expected.  She's still in ICU, but doing well.

1/16/2001:
Today Alyssa woke up with a 103F fever.  Yep, that means no surgery for tomorrow.   The soonest they could reschedule is Jan 31st.  This also means our Disney trip in February is off.  We'll get Disney in sooner or later.  The main priority is getting Alyssa well.

1/15/2001:
Murphy appears to be knocking on Alyssa's door.  She has been doing absolutely great since her last Chemo treatment in November.  She's been healthy and in great spirits.  Her surgery is scheduled for Jan 17th - this Wednesday.   Unfortunately, she woke up with a fever Sunday.  It hasn't been too bad - hovering around 100F.  The fever has continued through today as well.  As colds go, this one is fairly minor.  The bad news is that she will not be able to have her surgery if she is sick (this may actually be good news in disguise).  We called the Surgery Department at U of M and they said if she still has the fever tomorrow morning (Tue), then surgery would definitely be postponed.  Even if she doesn't have the fever, surgery might still be postponed depending on how she feels.  The Doctors (and us) want her to be strong and healthy for her surgery so she can heal quickly.  For now we are just playing it by ear.  When it happens, it happens.  The important thing is that the operation is successful and she get better.

On a completely different note, we heard some bad news recently.  The daughter of a woman I work with was diagnosed with cancer about three years ago.  This was also right around the time she gave birth to her daughter (granddaughter of the woman I work with).   Unfortunately, she has lost her battle with cancer.  Our prayers are with the entire family.

1/2/2001:
It's been a little while since our last post.  Basically, that's because there was not really much out of the ordinary to report.  We've been having fun just being normal without a lot of other things to worry about.  Alyssa's surgery is scheduled for Jan 17th, so we were all able to go through the holidays without having to worry about surgery or deal with her recovery.  As a results the holidays were very fun and relaxing for all of us.

The girls really seemed to enjoy Christmas this year.  They saw Santa at a "Pizza With Santa" party at Chelsea's school.  They had fun eating pizza with their friends and talking to Santa.  This year Alyssa was not at all nervous about sitting on Santa's lap.  Last year she was really afraid of him and wouldn't go to him.   This year she was looking forward to it.  She wanted to be sure he knew exactly what she wanted this year: Bitty Baby and two dresses for Bitty Baby.  Bitty Baby is basically a well built, realistic (expensive) baby doll from the American Girl Doll Company.  Chelsea has an American Girl Doll and several of Alyssa's friends have a Bitty Baby.  Alyssa was intent on getting a Bitty Baby from Santa.  Every time someone asked her what she wanted for Christmas, her answer was Bitty Baby and two dresses!  Chelsea asked Santa for a Razor Scooter and a Game Boy.

On Christmas morning the girls slept in to about 8AM, but when they woke up were very anxious to get downstairs and see if Santa came.  When we went downstairs, Chelsea took Alyssa to the family room where Santa leaves the stockings by the fireplace.  When Alyssa saw the handful of things in the stocking, she said something like: "that's it?!".  Chelsea assured her that this was only the stockings and that Santa probably left more gifts by the Christmas tree in the living room.  Sure enough, he did!  The first thing Chelsea saw was an armoire for her American Girl Doll clothes that I built for her.  It was unwrapped and she was amazed to see it.  She was surprised that Daddy could make something like that.  The look on her face along made the weeks of work all worth it.  When we started to unwrap the presents from Santa, Alyssa opened one or two then got as real sad look on her face and asked if Santa forgot about Bitty Baby.  Chelsea being a good big sister, directed her towards a present that she said looked to be about the size of an American Girl Doll box.  Sure enough, she was right and a Bitty  Baby was inside.  Alyssa was happy, but just for a second.  The next one she opened was the Bitty Baby suitcase (where you keep all her stuff - shoes, comb, etc...).  When she looked inside the case she said "There's no dresses" and was sad once again.  Chelsea helped out again and surprisingly directed her to presents that looked about the right size for dresses.  Yep, there there they were!  Alyssa's Christmas was perfect again.  She opened the rest of here presents, but she would have been satisfied with only Bitty Baby.  Chelsea was excited to find both a Game Boy and a genuine Razor scooter from Santa as well.  But the best part was when Chelsea reminded us that Christmas was not about toys & presents, but about Jesus.  Then we said Happy Birthday to Jesus and opened the card that we gave to ourselves that had the donation receipt to the Catholic Medical Mission Board (one thing on Chelsea's Christmas list was a gift for the poor). 

We also had a lot of time to visit with family and friends.  We visited with some friends on the Friday before Christmas.  We spent Christmas Eve at Grandma Ross's with Denise's side of the family.  We spent Christmas day with my side of the family at Aunt Lisa's new house.  And we had a couple Kid and Adult neighborhood outings as well. Fun was had by all.  A BIG thanks goes out to everyone!!!!

As for updates on Alyssa's condition:  Her surgery is scheduled for Jan 17th.  They are going in and trying to remove as much of the tumor as they can (unfortunately not all though).  She should be in the hospital about a week recovering.  We're hoping for a speedy recovery.  The Make A Wish Foundation has granted Alyssa's wish to go to Disney World.  That is planned for Feb 14th assuming everything else goes OK.  We all can't wait.

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