12/13/2002:
No news is great news.  Her next Doctor's appointment is on Dec 17th.

6/18/2002:
Same as before.  Nothing but good news to report.  Alyssa's scans and Doctor visits are going very well.

3/5/2002:
Nothing new to report on Alyssa.  She's doing great.  She's been going to a lot of her friends birthday parties lately and she can't wait for her own.

2/17/2002:
Happy belated New year.  

As usual, we haven't updated the web site in a while, because there hasn't been much to report - which is a good thing.  Alyssa recently went through another round of routine scans and exams.  Everything still looks great.  One of the tests they performed this time was a spleen scan.  This is a test that specifically tests the function of your spleen.  You may remember that Alyssa's spleen failed (died) during her long recovery from surgery.  As a result, she has been taking antibiotics twice a day to replace her spleen function.  The Doctors had some hope that part of her spleen was still intact or might be growing back.  Unfortunately, the test showed that she has little or no spleen function.  Still, in the big picture this is a small price to pay for an otherwise extremely successful surgery.

12/23/2001:
It's almost Christmas and the kids can't wait - even the big kids (Mom & Dad). Things have been going very well with Alyssa. About a month ago she went through another series of regular tests. So far, so good. The test did not show any signs of cancer. She has been on a three month test schedule and now she will be moving to a six month schedule. If everything goes well, the tests will become spaced out further and further.

Both Chelsea and Alyssa recently had their school plays. They both did a great job and we are very proud.

Merry Christmas to All

9/20/2001:
Same story.... it's been horribly long since we've posted any updates. The primary reason (excuse) is that things have been going very well lately (aside from the recent national tragedy). Alyssa has had several Doctor visits since the last web update and so far each time the results have been very positive. Alyssa has recovered very well from Chemo and surgery. Every indication is that she is disease free. She has been feeling well and seems to be going through a growth spurt (that's good because she has a bit of catching up to do). The only real lingering symptom is her diarrhea situation. She has been struggling with this ever since surgery. There has been some minor improvement, but still no where near normal. All in all, this is a small price to pay. In time this too should take care of itself.
In the last web update we hinted at having a page dedicated to our Disney trip. Well that doesn't look like it's going to happen. We took tons of pictures and had hoped to post many of them on the web for you to view. Unfortunately, we have sort of run out of web disk space and can't really post as many as we'd like. We may still get around to posting some. As an alternative, I have plans to burn some CDROMs to distribute with the pictures. Hopefully I'll get motivated and actually do it.

5/24/2001:
It's been a while since we've made any updates. We have been taking it a bit easy and enjoying some 'normal' time. The big news is that we recently returned from a week at Disney World - Alyssa's Make-A-Wish trip. Needless to say we all had a blast. We are working on a page devoted to detailing the Disney trip. Stay tuned...
Chelsea made her First Communion this past Sunday. We are very proud of her. She looked beautiful and really seemed to take the occasion very seriously. You could tell that she was proud of herself as well.

4/24/2001:
Happy Birthday Alyssa

4/19/2001:
On a slightly humorous note, Alyssa seems to be going through a kind of mental withdrawal from having her "tubes" removed. Ever since she had her tubes put it, she has been wearing a "squeezy" to hold her tubes neatly to her chest (so they didn't get caught on anything and get ripped out) and to hold her dressings tightly to her skin without need for an adhesive bandage. Her "squeezy" is basically Burn Netting that we make into a kind of tank top for her. Burn Netting is an elastic cotton material similar to fishnet stockings that comes in a cylindrical form. We cut a length of about 18 inches and basically have a really stretchy tube top. We then cut holes on each side near the 'top' for a place for her arms. In the end we wind up with a skin tight, comfortable tank top. For almost a full year she has wearing one almost constantly. She wore it all day, slept in it, and even took a bath with it. After a bath we would take the old one off, clean and disinfect her broviac area, give her skin a couple of minutes to dry, and put on a new squeezy. At most she would have the squeezy off for 10 mins a day.

Now that her surgery incision his basically healed and her tubes have been removed, there is no longer any need for her to wear the squeezy. Well, he will not accept that. She 'knows' that she has to wear one and wants to continue. It seems like she feels naked or insecure without it. It's kind of cute to see her going through this little mental struggle. I'm sure it will only take her a couple of days to work through this. And definitely the first time we ask her if she wants to go swimming, but only if she takes her squeezy off, she will gladly toss it aside and jump in!

PS. You can now get to our main Swanson Family Web page by going to the following web address:
http://www.dirkswanson.com
The old address still works, but this should be much easier to remember than the old address. Pass it on.

4/17/2001:
!!! A Belated Happy Easter to Everyone !!!
Today was a very big day for Alyssa. She had surgery at 7:30AM this morning to remove her Broviac (permanent IV). No more tubes!!!!!!!! She's had it in for almost a full year. It's hard for her to remember a time when she didn't have the "tubes", although she clearly remembers that she "used to be able to swim". It was a very early morning for us all - wake up at 5:30AM, leave at 6:15, blood draw at the Cancer Center at 7:00, Pre-Op at 7:30, Surgery at 7:45, and then an appointment with Dr Hughes (Oncologist) right after surgery.
The Doctor officially gave us the news we have been waiting a year to hear - "No signs of cancer in any of the post operative scans - MIBG, Bone Scan, CT Scan, X-Rays". Thank God.
We of course have to remain cautiously optimistic. There's always a chance of reoccurrence, but the Doctor feels very good about her chances. As a precaution, she will have monthly visits with the Doctor every month for a year and a set of scans every 3 months. If things proceed well, then the scans will drop to every 6 months, then every year, etc.
By the way, her incision is healing very well. The area where her Broviac used to be should also be healed within the week. Things are looking very good for our Disney trip in early May.

4/11/2001:
Officially, we have not heard anything yet from Alyssa's recent post-operative tests. Unofficially, we "might" have "sort-of" heard that the results looked pretty promising. We are waiting to shout for joy until the official word comes...

4/5/2001:
Today was the last day of Alyssa's MIBG test. Everything went well both days. The tests lasted about an hour. When she woke up from anesthesia, she wanted a Frosty and Fries - she dips the French Fries in the Frosty; pretty gross but it makes her happy. We should get the results from her recent tests in a week or two.

A friend told me about an interesting web site. It's called United Devices ( www.ud.com ). They have partnered with Intel and the National Foundation for Cancer Research to make use of the wasted processing power of your home computer. The idea is to make use of the time your computer spends doing nothing while the screen saver is running. It's called distributed computing. Your computer is added to thousands of others working on cancer research. If you are interested, go to their web site for more details and download program. You can create your own account or use Alyssa's account. I'm sure she would get a kick out of all the people donating their computer to her account. There are prizes involved as well - the more tasks your computer completes, the greater your chances of winning. I suppose if Alyssa does win a prize, she would have to share it with everyone donating to her account - or at least send out some thank you cards.

Her account information is as follows:
User Name: alyssanator
Password: (call or email us for the password)
Device Name - When the program first runs, it will ask you for the account information and the Device Name. The Device Name is a way to differentiate the various computers running under her account. Our three computer at home each have their own Device Name. You would want to choose a unique name for your computer. To help prevent duplication, you may want to name the Device beginning with your initials followed by a short description (example: DES_Home or DES_Laptop).

Let me know if you have any questions about this. It will be neat to see how much computer power we can donate towards the research.

4/3/2001:
Everything is still going very well with Alyssa. Over the next couple of days, she will be getting an MIBG scan. This is one of the scans that looks for cancer anywhere in her body. She had the radioactive die injection today. Tomorrow and Thu she will have the scan done. She needs to go under anesthesia for the scan - the usual no eating or drinking several hours before the scan routine.....
A week or two ago, she had a Bone Scan. They have the results back from that now and they noticed a spot on her ankle that looked suspicious. They took an Xray of her ankle today to get a closer look. Hopefully this is nothing to be worried about. She's had false alarms in the past from Bone Scans. The MIBG usually gives better results. Hopefully the MIBG will be negative.

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