Thursday February 4, 2010
Finally an update after three years.
For text, click here.
For pictures, click this link.
Thursday December 27, 2007
Wow! What a madhouse on Christmas day. The kids REALLY got into the spirit in a hurry. It seemed as if the gift openings went on for three hours to us, and the kids thought it was over too soon. How time flies! The photographer was a bit sleepy so the pictures this year are just snapshots. However you can see them by clicking HERE. After clicking on one of the pictures you can advance by clicking the right side of the larger photo. There is also a slide show link at the top right (mouse over it) and you can return to the index by clicking the center of the large photo. If you have not yet read Mike's update, click on the previous entry below to catch up on what is going on in Addie's family. Thanks for checking in again. We see all the hits on the web and it is so great to know that you are still involved with Addie. We hope you all had a great holiday, too. Our love to you all.
Saturday December 22, 2007
Merry Christmas to everyone from Addie and the family. The kids are getting excited about Santa coming and seem to be especially nice. Can that be true? Addie was in the school performance and looked so cute up there on stage. We don't think she's going to be a singer, but she enjoys it. She really does love drawing, however, and uses up page after page each day doing her "homework" for school. Mike has an update on all the latest doings and you can read it by clicking HERE. Check back after Christmas to see some more pictures. Have a very Merry Christmas at your home and thanks for checking in.
Friday November 23, 2007
Thanksgiving has come and gone, but we remain so thankful that Addie is just a normal child. As you will see from the latest pictures, she is just like any other kid, enjoying playing and absorbing knowledge like a sponge. Except for her hearing and eating problems, she is almost totally normal. We are so thankful for each of you who continue to monitor her progress and who share in our great happiness during this holiday period. Christmas will come all too soon, and we look forward to all the activities the kids will enjoy so much. The current pictures show the kids at the Children's Museum in Providence where they have enjoyed two three hour days of learning and playing. The pictures can be seen by clicking HERE. For sure we'll have new pictures up after Christmas, and maybe even before that. See you then ...
Friday November 09, 2007
We've posted some new pictures of the kids for Halloween. Click HERE to take a look. The kids had a great time. To look at the pictures, click the first picture and then click the left or right side of the larger image.
Friday September 28, 2007
We've posted some new pictures of the kids this week. Click HERE to take a look. In the orchard we have a picture of our very favorite nurse, Dianne. She is a real family friend now and totally devoted to Addie and her life. Nana is on the beach with the kids on an absolutely beautiful September day. As to the update, Addie is doing absolutely great in school now and is getting over much of her shyness. She participles in the activities and plays with the other kids with great enthusiasm. Still nothing new on the eating problem, however. She still just chews her food and spits it out rather than swallowing it. Stay tuned for Halloween as we'll have some pictures up after the big night for sure.
Tuesday September 18, 2007
Please see Mike's NEXT update by clicking HERE:
Tuesday August 21, 2007
Please see Mike's update by clicking HERE:
Tuesday June 5, 2007
Addie graduated from her beginners class and the little ceremony was priceless. All the kids seemed impressed that "something" was going on, and they got to be part of the action. It's going to be some time, but eventually you will all be able to see the pictures of Addie graduating from COLLEGE! Goodness, won't THAT be something! To see the pictures, click HERE.
See you all next time.
Saturday May 5, 2007
Wow! Great news in the Newport Daily News (one of our
favorite papers) which has done another update story on Addie. You can
read the article by clicking
Addie is doing great in school and just LOVES it. The Pennfield School in Portsmouthl has been an absolute wonder for us in all they do. From the administrative staff, to the assistants and all the teachers, they just couldn't be nicer or do a better job than what they do. We really owe them a HUGE THANK YOU. What else can we say? See you all for the next update!
Sunday April 22, 2007
If you will read Michael's letter you will see why it has been such a long time since our last update. So much has transpired over the last few months. Pictures of the flood are posted here.
Friday March 2, 2007
Can you believe it? On the 1st, Addie became FOUR YEARS OLD! After all the trials and scares and heartbreak, here she is just doing absolutely great and enjoying her fourth birthday party. Isn't it just great? Addie is still on the tube feeding and she still has a bit of a hearing problem, but she does just fine. She can hear normal speech, but it must be a bit garbled to her as she has a very small impediment when she talks. She does make herself understood, however. The latest picture page is a bit long, but there are lots of pictures and this looked like the best way to get them up. Thanks for checking in. See the pictures by clicking here.
Friday January 27, 2007
This is just a note to let you know that we will be changing our website servers over the next week. There will be several links which will need repair, so some of the pictures may not show up. We will be working on this as fast as we can and hope to get it all fixed as soon as possible. If you find any bad links on the site after about the middle of February, please send us an email and tell us about the problem. Thank you, email by clicking here:
Friday January 5, 2007
While Addie was out in Los Angeles over the holidays we all took a train trip to Olvera Street. It's the oldest street in Los Angeles and has some great restaurants and shopping for Mexican trinkets. We really enjoyed the train ride down and back and it was an easy way to avoid all the freeway traffic. See the pictures by clicking here.
New Years Eve, 2006
Happy New Year!!! We have just had a great time visiting my
parents in California, and are about to leave for the airport to take the red
eye back home on New Years Eve. This year we have had over 2000 separate people
check in on this web site to see updates on Addison. That just blows us away
that so many people still care about her progress. We have finally completed
2006, and look forward to 2007 with eager anticipation. Here are our updates:
Addison: Continues to remain status quo. She will drink a little milk occasionally, and will eat a few bits of yogurt. However nothing that is routine or progressive. She does like to "eat" many things, but almost always spits it back out, once it is in her mouth. It seems to us that the overall problem is that she fears choking, as well as having a hyper-gag reflex. After all the therapy we have been through, especially this past year, we believe that only time will be the salvation we are looking for. We are extremely happy with her school, and couldn't have anticipated the difference between public and private school (night and day). They continue to provide us with anything that Addison needs, and supports her with caring that goes from her teachers to the head master. Her hearing never did improve, and she wears her hearing aids in school, as well as around the house.
Evan: Has now equaled me in the definition of "terrible two's." For those of you who don't know, they still talk about me in Holland, where I lived during that time in my life; "that little crazy American kid named Michael." Although he is sweet, he gets into just about everything, and is a wholly terror. Again with him, time will be his salvation as he gets old enough to grow out of the temper tantrums (hopefully). With kids like this, I can see why sometimes animals eat their young :-) .
Taylor: Continues to amaze us with his size. He is now as tall as I am, 15 years old, sophomore in high school, girl friend, and is learning how to drive (I take him out occasionally to a parking lot for practice). His school work is much improved this year, for the exception of honors biology, where he struggles. He certainly is smart enough for the work, but he seems to have issues with the teacher, and her ideas of how the work should be accomplished. Hopefully he can pull his grade up to match his other grades, which will certainly help his college prospects, which we are starting to explore. He did very well in marching band this year, and plans on taking a trip to Disney World with his band mates in a few months.
Stacey: Has stayed home to help with the kids since May, but will be doing a little work next week to fill in for a vacationing co-worker. She enjoys the time with the kids, but also misses her career. We've been fortunate enough that she can do both. Between shuffling Addison off to school, and getting her to her appointments, Stacey still manages a pretty tough schedule.
Mike: My job continues to go well. I have finally become an account executive again (I was a junior for someone else until Sept). I look forward to servicing my accounts, and it is starting to bear fruit. I continue to ride dirt bikes with my brother, and at least this year I haven't broken any bones (although I have fallen many times). My brother was able to get a job at my company, so we are once again working next to each other.
I want to thank you all for your interest in my family. Addison is such an inspiration to us, and we just marvel at how far she has come from a little 1 lb 6 oz preemie, then into cancer, and now the long road of recovery. She is strong, smart and beautiful, and we look forward to seeing just how far she can go. Due to all of you, she certainly has the support and love that she will need throughout her life. Merry Christmas and Happy New Year!!!
Mike and Stacey Vogl.
Merry Christmas to all! We just got a BUNCH of pictures up at http://vogls.com/christmas06 and will have a few words for this update later today or tomorrow. In the meantime, we want to wish each and every one of you a Very Merry Christmas and we hope this special day has been wonderful for you, too.
We got some pictures yesterday, some of them with the kids making the Thanksgiving pies. We hope to have some family pictures up after the big meal and celebration today. Please check back in a few days. In the meantime HAPPY THANKSGIVING to all of you in our special extended family. For the pictures, click here:
Veterans Day, 2006
All of us at vogls.com offer our heartfelt thanks to all our Veterans on this special day. You have earned the thanks and admiration of us all.
See a few new pictures by clicking here:
Monday October 30, 2006
Hello! It's been some time since we've had anything to report, but with some new pictures of carving the pumpkins this year it's time to catch up on what news there is. Addie started preschool and absolutely loves it. She is learning songs, playing with her new friends, and even gumming some bread during lunch time. We increased her feeding as her weight was dropping and she is now up to just over 30 lbs. That is still light for her age, but it a vast improvement from when she looked like she was starving. You can see from these latest pictures that she looks much better.
Last week Addie got her clothes on, grabbed her coat, picked up the car keys from the kitchen counter, and announced that she was off to drive to the airport to pick up Nanny and Pappy! What a hoot!!! She was convinced that it would only take her an hour to go and we shouldn't cry! She has now tried this stunt a couple of times so we are having great fun seeing her imagination expand.
She is in "big girl" panties now and quite proud of her ability to go the bathroom all by herself. She is so pleased that she proudly announces this fact to everyone in the grocery store, too.
We'll see how the trick-or-treat pictures come out, and if they do we'll put them up later on. Until then, check out the carving pictures by clicking here. We hope to see you back soon.
Monday September 4, 2006
Since our last update Addie has refused to eat enough food to make a significant contribution to her health. We have had to increase her stomach tube feeding so that she can get enough calories. She only weights 26 pounds and looks really thin. Her eating classes have run out of authorization so we'll just have to see if she eventually goes back to trying to take some food by mouth.
Tomorrow Addie starts her first day of preschool and she seems excited about going. We'll take some pictures if we can and will put them up as soon as possible. It's a really nice new school and we hope she will see other kids eating and will want to try it herself.
Wednesday, August 23, 2006
We are very sorry to report a setback. As you know, Addison has been taking classes for a special feeding group and she had been making some small, but measurable progress. We were somewhat encouraged that she could tolerate some yogurt and 5-7 one ounce "sippy cups" of milk. She seemed to enjoy our "chug-a-lug" games and racing us to finish our milk. However, in the last several days she has stopped putting anything in her mouth and absolutely refuses to eat. She has lost another pound this week and is nothing but skin and bones. Yesterday she sat at the dinner table and took no interest in everyone else and then she just fell asleep in her chair. All she wants to do is to sleep, and she is not the funny, vibrant imp that we are used to having around. Once again we adults are having trouble holding back our tears.
We will have to find a solution soon. She is slowly wasting away and will have to go back on feeding tubes full time soon.
Today her authorization to the eating classes expires and she will be left to learn to eat by herself.
Please check back in a week or so for another progress report.
Monday July 31, 2006
Addison made a breakthrough! While she was in the kiddie pool (pictures here) she said she was hungry and asked for some yogurt! Everyone was absolutely amazed and scrambled to get into the house and bring her a carton. She proceeded to take the spoon and she ATE THE WHOLE PACKET!!! This is a TREMENDOUS improvement because not only did she eat something, she recognized the association of hunger to the act of swallowing food. We will be watching this very closely now so check back every week or so and we'll try to keep you all in the loop. Oh, boy! Let's hope this was not a fluke!
Thursday July 13, 2006
Addison has been accepted to a specialty feeding group here in Rhode Island. So far, she is doing quite well, and has on several occasions eaten pudding, and had milk. Although she has done similar things in the past, we are hoping for more consistency, and an improved ability to start eating enough calories to start replacing her feeding tube formula. Every day, Stacey (who has stopped working) drives into Providence by 8:15am, and stays until 3pm or so. Evan stays home (so she can focus solely on Addie) with my parents, who flew in from California, to once again help us get through this stressful time period. Taylor has gone to his mother’s home in Alabama for the summer, as he usually does. Mike is doing very well at his new job, and should be promoted in September. Rob, Mike's brother, was also hired at the same company, and so they once again see each other every day. We hope everyone is doing well, and we enjoy seeing the numbers of website hits that this website receives each month. It means a lot to us to still have so many people care about Addison’s life and progress. Some new pictures by clicking here:
Sunday June 11, 2006
Oh, my goodness! I owe you all an apology for not updating in some time, here. Addie's father, Mike, graduated from Salve Regina with his MBA and I forgot to link the pictures to Addie's site. (Really sorry, here.) There are a couple of pictures of Addie at the ceremony so you can get an Addie fix with the latest pictures we have of her. We hope to have a bunch more put up by the end of next month. Hope to see you then. You can see the pictures by clicking here.
Sunday April 2, 2006
We have some pictures of Addie and Evan at the Newport parade and then later back at the house. Everyone had a great day and the kids really enjoyed all the excitement. You can see the pictures by clicking here. There are several pages, so click the right arrow at the top to get the next group of photos.
Monday March 5, 2006
Three years ago all the turmoil with Addie began and you all have been a part of the saga for all this time. Now it is time for all of us to celebrate Addie's 3rd birthday! Isn't it something! All those days of worry and concern are almost entirely gone as this cute little munchkin enjoys a small party of relatives and a few friends. Once again, we thank you for all your love and support and for being such loyal fans of our little darling. We wish you could all join us for our family celebrations, but we suppose the web site will have to do for now. We'll see you next update. Click here for the pics.
Saturday February 4, 2006
It's hard to believe, but Evan is ONE YEAR OLD now! We've said that what Addie lacks in eating, Evan more than makes up enthusiasm for food. Check out some pictures by clicking here, and see what a real eater can do with a piece of chocolate cake! Also, there is a short movie of Evan taking his first steps. Check under the last picture on the page for a link to the movie.
Sunday January 16, 2006
Here are just a few update photos that are kind of cute. We thought you might like to see how big the kids are getting. Evan LOVES pizza!
Christmas Day, 2005
We now have pictures of Christmas day, a day the kids have been anticipating for a long time. Addie and Evan really got into the spirit of things and had more FUN ripping off all the wrapping paper from the presents. Poor Evan was so tired from all the effort that he just pooped out on the floor of his room for a nap. Now it's off to relatives to enjoy the family and the rest of this beautiful day.
Merry Christmas to all of you who have stopped in to share this day with us.
Click HERE for pictures.
Saturday December 17, 2005
We have some new pictures starting the Christmas Season for you to see. We'll be taking a few more over the next few weeks. Addie is doing just fine, but she has not gained any weight for the last year. She still won't eat, and the liquid diet is difficult to infuse with enough calories. We'll just have to hope that she eventually catches on. You ought to see the table after she's finished a meal and dribbled the entire amount back out! Phooie! See the latest pictures by clicking HERE.
Sunday November 6, 2005
Here are some pictures from the Patriots football game this weekend. Addie loved all the excitement of the game and all the kids running around the bleachers. We also have a few photos from a community dinner. See the latest by clicking here.
Tuesday October 31, 2005
Addie, Evan and family went out for Halloween last night and the kids had a GREAT time! As you will see by the pictures, the excitement and costumes was worth all the effort. Now we have to decide how to dispose of all the candy before the kids don't have any teeth left. Hah! Fat chance! Anyway, everyone is doing just fine, and we look forward to putting up some more pictures later this week. Please check back again. To see the Halloween pictures, click here.
Monday Sept 26, 2005
Here is a letter from Mike that speaks for itself. Good news about Addison, however.
We just can’t seem to stay away from hospitals. Rob and I were out riding our dirt bikes, yesterday, and I wrecked…broke my left leg Fibula bone in 3 places (it’s the smaller of the two bones between the knee and ankle). Hurt right hand (x-rays say it isn’t broken, but it hurts like crazy), bruised left knee, and two skin abrasions on my elbows, as well as general soreness. Fun, fun, fun…
Just thought I’d share the joyous news. I have to call the orthopedist tomorrow to get an appointment to find out how long the splint has to be on. Stacey just loves the extra work she has to do around the house now J
On another note, Addison has been actually eating for several days, now. Yogurt, pudding, etc in full mouthfuls and normal swallowing. We are very excited, and hope this will lead on to eating everything else.
Saturday Sept 17, 2005
Addie, Evan and family made it home to Rhode Island on Thursday and are settling back into the normal routine. Nana and Pappy miss the noise and turmoil already. Everything just seems to bubble when the kids are around. We are all back to normal now and glad to be over the flu. Addie lost a lot of weight due to not eating for three days and it will take some time to gain it back via the feeding tube. Addie likes to gum food which is a good sign. Now if we could just get her to swallow ....
Things will be a bit quiet for a while, but once again, we thank each and every one of you who check in to catch up and get their "Addie Fix." We hope to see you back again, and you may like to know that there have been about 8,500 hits to this page!!!!!
Here are some new pictures. You can mouse over the thumbnail views or click on any one of them. After you click, you can use the navigation buttons on the top right of the screen. Click HERE for the pictures.
Wednesday Sept 14, 2005
ADDIE POOPED! Yep, all is well in La-La Land! Addie and her parents are out of the hospital, weak, but feeling much better than they have for the last few days.
We'll have some pictures up tomorrow or the next day if we can.
Thanks for checking in!
Tuesday Sept 13, 2005
We find Addie and Evan on a visit to Nanna and Pappy's in California in this latest update. Unfortunately, after only two days Addie was throwing up and had to be taken into UCLA Childrens' Hospital. After consultations with the doctors in Rhode Island, they determined that it would be inadvisable for her to travel home, so she was admitted in Los Angeles. She has a blockage in her stomach or intestine that is not allowing normal passage through her system. The plan is to wait for a couple of days and see if things work out naturally. However, if the blockage doesn't clear, Addie will have to have another major operation to fix things up.
She has been in the hospital for two days now without change. In the meantime, everyone has come down with the flu. Her parents were both admitted to the hospital for dehydration and Nanna has been sick at home while watching Evan. Since they were in the hospital and could not travel back home on time, their airplane tickets were lost. Only Taylor was able to take the flight back to RI to go back to school. However, we found out this morning that HE is sick as well and had to have his uncle come over and keep an eye on him. This has not been a great visit to say the least!
We will update again so you can follow Addie's progress. Please check back until we get this whole mess resolved.
The latest pictures are HERE.
Monday July 18, 2005
Welcome! We know it has been a looooong time since we put anything up, but since we got some new pictures we thought those of you still persistent enough to check in would like to see them. Addison is doing just fine as you can see, except for the hearing and the non-eating problems. She really is a cutie pie and seems to be progressing very rapidly and we all just love her to pieces. Evan is really growing by leaps and bounds and it looks like he's going to be a bit chunky for some period of time. It is great to have a child who actually EATS normally, too!
Thanks for checking in again. Now, take a look at the pictures by clicking HERE.
Tuesday March 7, 2005
Yesterday we celebrated Addie's second birthday (March 1) and we had a GREAT party for her. She was somewhat overwhelmed by all the attention at first, but it didn't take her long to get into the spirit of ripping open the presents and immediately looking around for the next one. She still doesn't eat anything, but she seemed to enjoy sitting at the table and throwing little pieces of cake onto the floor and feeding the dogs. She got a pair of sunglasses and just loved them. She kept running over to the mirror to see how "cool" she looked, and she is ONLY TWO! Do you think we see a problem coming???????
Evan just slept through this entire ordeal. We got a couple of pictures of him smiling at us (or maybe it was just gas) and he opened his eyes a couple of times. He is doing just great and really doesn't cause any trouble at all. Once we remember to cover him with a diaper when changing clothes, he's just not a problem. As you can see in the pictures, he doesn't enjoy his bath yet. Perhaps later on he will find it more fun.
We're trying to get Addie to wear her hearing aids about 30 minutes per day, but it is awfully hard to do. She keeps pulling them out and getting her to hold still long enough to put one in each ear is VERY difficult. She has learned how to be a major squirm expert.
Thanks for checking in. You can see the latest pictures by clicking here.
Tuesday February 15, 2005
Evan came home yesterday! We thought that he would have to stay in the hospital for another week, but he is doing so well that the doctors said he could come home. He has been paraded around to all the relatives and is holding up well. Addie is fascinated with her new brother but we have to watch her as she doesn't know her own strength. She squeezed his hand so hard once that it was turning white. Anyway, here are some more pictures of the kids. Gee, this is turning out to be almost a regular household. As soon as Addie can eat, things will be totally normal. We will get some more pictures up in a couple of weeks. Click here for pictures.
Saturday February 5, 2005
Well, here are some pictures of Evan. He is doing just fine and the doctors are totally pleased with his condition. Despite being six weeks early he is doing just great! We'll have more information up (sorry) after the Super Bowl. Click here for pictures.
Thursday February 3, 2005
Today at 12:11 pm Evan Vogl was born! He weighed five pounds twelve ounces and appears to be just perfect!! Since he was born six weeks early he will be in the NICU for a while until they can check him out and make sure all is well. Stacey is tired, but since she went into the hospital on Sunday, she is happy this is all over. Everyone here is jumping for joy that Evan made it through the roughest times already. We will get some pictures up as soon as we can, hopefully by this weekend. AWRIGHT!
Monday January 3, 2005
On January 1, the Polar Bears held another fund raising event on Newport Beach for a little girl needing a heart transplant. Addie attended because these wonderful people helped her so much when she needed help last year ( http://vogls.com/polarbears/ ). Here are a few pictures of Addie at this years event. http://vogls.com/newyear05
We wish all of you a happy and prosperous new year. This is going to be a GREAT year for Addie!
Thursday December 30, 2004
A new article in the Daily News is at http://vogls.com/dailynews.htm .
Tuesday December 28, 2004
Merry Christmas, everyone! Addie had her first real Christmas this year, and we are all thankful that she is not only alive, but doing so well in all aspects of her life. YOU played a huge part in this recover, if not directly with her health, with her welfare and easing our minds during this last very turbulent and scary year. It is you, Addie fans, who have made our journey bearable and made such a very great and positive difference in our lives. Once again we thank each and every one of you from the bottom of our hearts.
We have a few pictures of Addie opening her presents and wearing her favorite slippers at: http://vogls.com/christmas04 . Also, Mr. Steve Peoples wrote another wonderful article in the Providence Journal and you can read that by clicking http://vogls.com/projochristmas.htm . Addie had another MRI just before the holidays and it came out GREAT! Right now there is no sign of cancer and we couldn't be happier.
We now await the birth of Addie's little brother who is due in mid-March. If you don't get a chance to stop in for a while, make sure you come back then for the latest update.
Happy holidays to you all, and have a happy and great new year.
Monday November 29, 2004
We took some pictures of Addie during our Thanksgiving dinner and have put them here for you. Some of the pictures are a bit fuzzy, but you can still see how big she is getting now. She is gaining weight despite her vigorous activity and constantly being on the go. The other baby in the pictures is Addie's cousin. He is a cutie, too. Everything is going just great, and we will put up some more pictures by Christmas for sure. So long until then.
Sunday November 7, 2004
We took some pictures of Addie after her bath and with her playing with some bubbles. You can take a look by clicking here. There is also a picture of her getting into mischief in the kitchen cabinets. She LOVES to empty the cupboards and immediately shove everything she takes out of the doggie door. That really isn't too bad except when it rains and we haven't noticed some of the things are still outside. She is learning to sign and now knows how to convey, please, thank you, more, down, and sleep. It is just great that she can communicate even before she can speak and we believe it really reduces her frustration.
We'll try to put up some more pictures at the start of next month. So long until then ...
Wednesday November 3, 2004
We just put some new pictures up of Addie and her food pump back pack. There is also one picture of her looking at the pumpkin before going out on trick-or-treat. She started out on our walk just fine, and was pointing at the other kids going from house to house, however, after only a couple of houses, she got sleepy and nodded off. How does it seem that she puts on 20 lbs. when she goes to sleep? Anyway, it was a short walk on a beautiful Halloween night.
Addie is doing fine now except for her waking up every single morning about 5am and starting to gag. She retches for about 30 minutes and then goes back to sleep. We feel so sorry for her as she usually just the dry heaves for a long time before getting rid of a lot of her nightly "meal". She is hooked up to the feeding tube and the pump all night long so that she can get most of her food while sleeping. Then, during the day she can just use the back pack for a couple of hours and have the rest of the time to run free.
Every morning it's wash the clothes, the sheets, pillow cases and give her a bath to clean up. She LOVES her bath, though. She splashes and plays with her toys and just has a great time! After her bath comes reading time and play with the dogs. This goes on until nap time and then starts all over again. She really is a happy kid.
We'll try to get some more pictures up next week or so, and we hope to see you then.
Monday October 4, 2004
Addison is doing fine walking and using her food pump back pack. Check her out by clicking Addie Walks!. All is well ... she is growing and just fun to be around.
Friday September 24, 2004
By now you're probably wondering if we're still here! Well, we are, it is just that it seems boring to just list our normal daily routine. However, on Wednesday we got some more great news and it's time to put it up on the site. Addison had an MRI and the results were perfect! There were no traces of cancer and her blood work shows her markers are healthy and normal and she exceeded all goals. WOW! Just think what things were like exactly one year ago when we were so scared that the end was near. Addie is up to 21 lbs. now, and has just started walking. She can take about 20 halting steps on her own and is now officially a toddler. She has learned to get into almost every storage area and knows how to make a mess of anything she can get her hands into. As exciting too, is that she said "Ma Ma" as she emerged from the MRI anesthetic!
She is now putting a few things in her mouth which is great. It used to be that she would throw up every time she got something in her mouth, so the fact that she can tolerate anything is definitely a good sign. It will sure be great when she dumps the food pump with the tubes and eats normally.
Her hearing is about the same as it was before the last chemo treatment. As the doctors were very sure that the last treatment would significantly degrade her hearing, she was very lucky. She has moderate to mild degradation in one ear and mild degradation in the other. Obviously she can hear as she is starting to talk.
On other subjects, Stacey is extremely tired, her back hurts, she is still sick in the mornings and she is looking forward to feeling better next month. She is starting to put on weight so the baby is growing normally. We're all pulling for her and the baby.
We will have an update in about a month unless something significant happens, and then we'll get back to you right away. Thanks for tuning in, see you next time!
Thursday August 19, 2004
Busy, busy, busy! That's what Addie is now ... always on the go, getting into everything, tipping over the dog dish, pulling out the pots and pans, and scooting all around the kitchen and the living room. She gets to move around because we can take her portable pump off for about four hours at a time. The pump is set to boost her feeding to compensate for the time while it is off, so she gets the correct amount of food. You can tell from the pictures that she is doing SO much better at gaining weight now. She really has so much fun moving around. She really feels FREE!
Earlier this week Addie's cousins (Kayla and Ryanna) came to visit Addie and Taylor. We took some pictures and just decided to put them all up for you to see. As you are all part of the family now, we guess you won't be too bored with "family photos". Taylor is standing on the table because he was spraying for a spider which had just crawled up to the ceiling. Nana knitted the blanket for Addie but every time we took a picture she pulled the paper in front of her face or turned her head. Oh, well. The girls were doing cheerleading routines in some of the last pictures. Sorry about the Olympic boxing picture. It was a good boxing match but it lost something in the photo process. Also, we didn't have time to process the pictures for red-eye so they will look a bit strange. Click here to see the pictures of Addie Pictures in August.
Monday August 2, 2004
Wow! Please see Mike's letter by clicking here.
Thursday July 29, 2004
We're sorry for the site down time, but our ISP had some problems and we were off the air for several days. Things are back to normal now, so that's good.
Also good is Addison's new back pack which holds a smaller feeding pump. This allows her to move around without having the stand and long tubes trailing after her and really gives her more mobility. Also, she is sleeping later in the mornings and there is now a chance for the adults to get some more sleep! (Now, that is REALLY great!) She is up to 19 lbs. now and gaining strength every day.
The only problem is her lack of eating normally. One of the doctors says that she probably won't start to eat by mouth until it becomes "socially desirable" at around age three!! Yikes, two more years of the back pack and pump!
Addison is a regular traveler now and goes out in the car and shopping just like all kids. It is great to have the freedom now to start moving back to a normal life.
Thanks for stopping in, and see you next time.
Friday July 23, 2004
All during the last week Addison has been taking many tests and examinations. Yesterday we got word that all the results are great, there is no sign of cancer, and that she seems to be perfectly normal!!! WOW! What great news and we knew you would want to know the latest.
Addison is really doing fine and acts just like any child at her age. She is learning to crawl and walk and she loves her jumpy chair where she can scoot around the room. She absolutely LOVES to wave at everyone and has so much fun watching people wave back. She uses a "royal" wave by just moving her wrist and opening and closing her fingers. What a cutie!
While Addie was in California, she stayed with Nana and Pappy in Acton. Three days ago there was national news about a huge fast moving fire that JUST missed the house. See some pictures by clicking Acton Fire Photos.
We'll let you know if anything new crops up. Thanks for checking in.
Tuesday July 13, 2004
Addison has been in Acton, California showing off to all the relatives out here. We had a big party at her Great Uncle's house and even had relatives come from Vienna, Austria to see and play with her. It was a great party and she was very, very good during the evening and on the late drive home. Then she had a party with relatives from Northern California with Nana and Pappy and she showed off once again.
Unfortunately, she will be on her way home back to Rhode Island by Thursday, and we are all sad out here. However, we know that her east coast relatives have missed their "Addie fix" and they are anxious to see her again. We hope you have enjoyed the newest pictures, too.
We're trying to work a short video of her crawling, but the computer is not cooperating. Maybe by next week ....?
Wednesday July 7, 2004
After a long plane ride on United Airlines, Addie arrived in Los Angeles, California and traveled to Acton to see her grandparents and all the California relatives. She did very well on the trip and made fast friends with most of the passengers by waiving at them almost the whole flight. NO one can resist an Addie wave!
We've put some new pictures up here, so please have a look. By clicking on the thumbnail picture you will get a larger view, and then click on the right, left or center of the picture to navigate. She is so CUTE!!
We'll have some more pictures up in three or four days, so please check back in then.
Friday July 2, 2004
This week Addison will be traveling to California to visit her west coast family members. Although the flight will be difficult, it is "doable" and we'll see how it goes. Everyone is excited to see her.
Addison is doing so much better now! She is just like a normal kid, learning to walk (with help, of course) trying to stand up, scooting around on the floor, and it is absolutely heart-warming to watch her with her new experiences. After all she has been through, seeing her play normally is a real treat for us all. We wish you could be here to see it, too.
When she gets to California we'll put some pictures up for you all to see. Right now the travel arrangements are up in the air, but we expect to find seats on the 4th or 5th. We should have some pictures up a few days after that.
Until next time ....
Sunday June 20, 2004
This was a whirlwind week! Addison was paraded around Washington, DC and met many influential people in a quest for increased funds for cancer research. See the story from the Providence Journal by clicking here.
Addison is learning to "scoot" rather than crawl, and she seems to go backwards more than forwards, but it is so much fun to watch her give her best effort. She tries to stand up and wobbles back and forth, but she has the biggest grin on her face that you could ever imagine. She is just having pure fun!
We'll try to have another update next weekend if all goes well. Thanks for stopping in.
Sunday June 13, 2004
Addison has been doing just GREAT this last two weeks. She is up to 17 lbs. and is starting to play with a bottle of water. She won't drink it, but she will put the nipple in her mouth and pull it out again. We make a game out of it, cheering when she puts it in her mouth and booing when she takes it out. We hope that this will teach her to drink and that we can soon put milk in the bottle and get her to start eating and drinking normally. This is an encouraging improvement.
The doctors have not decided on a date for her hearing test, but it will probably not be for a couple of months until the chemo settles out.
The big news continues to be Addie's trip to talk to a Congressional Committee on next Tuesday, the 15th of June. We have many of the pictures you have already seen that we can show, and we hope that her appearance and her story will help other sick children receive the care that they need and deserve. We are excited about this wonderful opportunity.
We'll try to update again next weekend so we can give you the results of Addie's trip to Washington. See you then.
Saturday June 5, 2004
Progress continues. Addison now has her new hearing aids but she is NOT a good patient! She keeps pulling them out and it is a frustrating process for us to keep them attached so that she can hear properly. She must wear them all the time so that she can hear the subtleties of speech and can learn how to speak properly. This will be an ongoing battle for sure! She can also now take a regular bath by removing her line and closing the button. She has a little chair to sit in so she doesn't soak in the water and she does enjoy her bath!
She also has her first pair of real shoes and they will help her learn to walk, although she can only crawl a few steps backward at this stage. Now that the line can be removed she can get on her stomach and learn to crawl, a nice improvement.
Some of the big news is that Addie will go to Washington DC to be presented to a congressional committee as an advocate for increased cancer research and funding. The Hasbro Children's Hospital through the Tomorrow Fund is sponsoring her trip on the 15th and she will be there for three days. We have great hopes that Addie's presence will help other children with cancer receive the treatment they need. We'll have more about this representation later on.
Now, for Ryanna's update. Ryanna had three tests on her kidney and two of the three results have returned. Our best scenario did not happen (medication would clear up the problem) but the worst scenario (immediate transplant) didn't happen either. We are left with two options from the third test results due back in a couple of weeks. One situation is that she will require medication for the rest of her life, and the other is that she will need the medication but will still require a transplant in 15 - 20 years. With the rapid advancement in medical research there may be a cure for this problem before she would need the transplant. Therefore, things seem to be working out ok. We are greatly relieved that she won't need the immediate transplant and that medication will be able to control the problem, whatever it turns out to be.
We'll try to get another update by next weekend, so until then, so long for now.
Tuesday June 1, 2004
Welcome back, everyone! We are glad that you have tuned in to get another "Addie Fix" so to speak.
Well, everything seems to be going just GREAT! Addie continues to be more and more like a regular kid and is progressing rapidly. About two weeks ago, the doctors removed all the lines into her body except for the one feeding tube. Since that line has a "button" on it, the line can be removed for short periods of time and then reconnected as necessary. This gives Addie the ability to be totally off her connection and move around and play for a while just like a normal child. Obviously she has trouble lying on her stomach, but that is a minor annoyance. It is so GREAT to see her having fun with her new toys.
As the chemicals from the chemo take several months to settle out, her final hearing test won't be done for another two months and at that time we will know the extent of her hearing loss. Hearing aids are ready for her once they get the final data. As for her blood work, it all seems to be just fine. The cancer marker is very low and that is a good sign. She will get checked frequently from now on just to insure her continued good health.
Addie was featured on page 48 of the June edition of "Money" magazine and we hope that her exposure will help other children who still need extensive help as Addie did. There is a possibility that "People" magazine will also do an article in a few months. We'll let you know.
We thank all of you who have sent in notes and expressed your happiness at her progress. We really appreciate your efforts.
Now, unfortunately, some possibly bad news. Addison's five year old first cousin, Ryanna, had to go into the Hasbro Children's Hospital for a kidney biopsy last week. Apparently her kidneys are under extreme stress with excess protein, and the doctors are concerned. They don't know what is going on, but once again, we may face some transplant or dialysis decisions. Ryanna was on the same floor as Addison was, and all the nurses and doctors stopped in to say "Hello" to the next Vogl. Oh, my.
We will have the results of Ryanna's biopsy by mid next week and will post the results here. IF this turns out to be serious, we will begin a new page for Ryanna for those of you who will care to track the continued saga of our medical problems.
Please check back in next week for another update. We'll try to have it ready by Saturday evening. We hope to see you then.
Saturday, May 9, 2004
Is that a great picture or what!!!!! Addison is truly a different child now that her chemo is over. When we look back at the pictures taken when she was so sick (here and here) and we didn't know if she would survive, we are just elated at the difference. She looks, acts, feels, and plays like a normal baby now, and we marvel every minute at the change. We wish you could each hold her yourself and give her a big hug and tell her how much you have been pulling for her. We will be saving all the web site and the scrapbooks to insure she knows about the early days of her life, and so that she will eventually understand how many strangers loved and cared for her.
There are more procedures to come, but this weeks update is going to remain totally positive.
We took Addison to the Aquidneck Island National Police Parade in Newport and we went out for dinner to celebrate the end of her chemo treatments. Pictures are available by clickinghere or clicking on the link on the far left side of the page. It was a great, great day! Speaking of great days, tomorrows Mother's day will be the best EVER!
We will post all updates on the first of the month from now on, but we will send a special notification to you if something important comes up. The absence of weekly updates is a good sign and an indication that her recovery is continuing in a positive direction. See you then!
Saturday, May 1, 2004
On Thursday, Addison HAD HER LAST CHEMO TREATMENT!!!! We have to tell you all that we breathed a monumental sigh of relief on the way home. We were in a great mood knowing that the most dangerous part of this journey is now over, and it's just a dusty rutted road ahead as we aim for the highway. Addison was quite sick for a while that evening and into Friday, but by Friday night she was obviously getting better and starting to get back toward her old self again. She took a two hour nap and when she woke up she was "on" for all of us. Perhaps she knows the worst is over and she was ready to play.
Each week she will go back to the hospital for blood work, and in about a month or so she will have her comprehensive test for hearing and a cat scan to look at her liver. Other than that she will just take therapy to try and teach her how to eat. One doctor told us that one of his patients did not start eating until he was four years old. This was not a particularly good story and we are sure Addison will be a faster learner.
Since things are starting to become "routine" we will make the next update in a week. Should anything of importance happen in the meantime, we'll email each of you who have dropped us a note at one time or another.
Wow, what a road! We're still taking time to sort it all out, but, once again, we have to thank each and every one of you who have followed this story for so long and with such interest and concern. It's not possible to adequately say how much we've appreciated your active interest in Addison and your wonderful notes of encouragement. Thanks so very much. We'll see you next week.
Monday, April 26, 2004
Well, it's been a happy weekend. Addison was ill after her treatment on Thursday and had aches and pains in her bones until Saturday, but then she started to feel much better. She has been playing in her kiddie swing and trying valiantly to stand up. All and all she has been animated and doesn't seem to have any additional hearing problems. We don't know if she can actually hear us, or just hears the vibrations, but we will find out when the doctors do the comprehensive hearing tests later on.
Yesterday Addie went for a charity walk in her stroller and really seemed to enjoy all the hoopla and the people. She was the center of attention and it didn't bother her one bit! Next Thursday Addie goes in for her LAST chemo treatment! We are all excited and happy that most of the journey is approaching completion. Please check back in on Saturday when we will have the details from her last treatment and how she seems to be doing. See you then!
Thursday, April 22, 2004
Welcome back! Addison has been doing just GREAT this week. She has been playing, laughing, smiling, growing hair, and generally just being a kid. As far as we can tell her hearing has not gotten worse from the last check, but we really won't know until after her comprehensive tests in a couple of weeks when her chemo treatments end. Today she goes in for her next to last push, so she will be sick today and tomorrow. However, if she performs as before, she should be back up to speed and her old self by the weekend. We'll plan for another report for Monday morning.
We were very pleased that "Money" Magazine will be doing a small article on Addison as part of their series on pediatric patients. The article should be out in the next issue in about three weeks, and we'll let you all know as soon as we see it. We are somewhat embarrassed in that there are many other children who are in worse condition than Addison is, and we wish they could be featured as well. "Money" is doing a wonderful service by doing this series and we hope Addison's story will help focus attention on the problems. Please look for the magazine in the coming weeks. See you Monday!
Monday, April 12, 2004
Due to business requirements I had to post this today instead of tomorrow. Addison has been doing just GREAT this week and was even animated enough to "pose" for some videos. See a very short clip of her in action by clicking here or on the link at the left. She is so cute!
Well, the decision has been made to give her that last chemo treatment, the strongest one yet. Once again we hope that her hearing will not be significantly affected and that she will make it through fine. On the positive side of this is that her chance of getting cancer again will be greatly reduced by one more treatment. As said before, IF she gets cancer again, it will be almost impossible to treat as the cells will then be resistant to treatment through further chemo. We'll just have to hope and pray that Addison will copy her previous resistance to hearing loss.
Doctors plan to start the last treatment on Tuesday or soon thereafter. As soon as they make the decision we'll let you all know. We hope you all had a great Easter weekend, as we did.
Tuesday, April 6, 2004
Addison's doctor is on a brief vacation so the next chemo treatment may not be this week as planned, but next week some time. We'll find out more later. The doctors say that Addie is doing very well and her tolerance to the last treatment was quite something. We really had a fun time with her today. We took her OUT to lunch and for a drive and she seemed to enjoy it all. It's a minor bother to carry the pumps and lines, and we have to be careful not to get them snagged on something, but it was great to be out in the world again! People are so nice, and at one restaurant EVERYONE came out to the car to see her. We don't know who was watching the store, but no one seemed to care. It just shows this is a great place to live!
Now we would like to say a very special thank you to all those who made the fundraising buffet on the 27th such a success. These wonderful people went above and beyond to insure that the evening was extra special. So, Addie sends her "personal" thanks to: Chris O'Brien, Carol St. Amant, Kristin Sandberg, Lisa Houser, Paul Cataldo, Steve Bernardi, Sheila Figueroa, Pat Briggs, Pat Sousa, Katie Lynn Houser, Felicia Houser and Vicky Brisco, (Harbourside owner). Thank you, ALL!
As there won't be much to report on for a few days, and we don't want you to keep checking and not find an update, our next "official" update will be late next Monday evening or Tuesday morning. We'll see you then!
Saturday, April 3, 2004
Well, some good news for a change! The results of Addison's hearing test came back and they showed only minimum damage done by this round of chemotherapy! Doctors had anticipated up to another 30% loss with her hearing, but it didn't happen! This means that we can go ahead with the last round of chemo next week, and, even if there is another loss, Addison will still retain enough hearing that a hearing aid may be all she needs!!!! The cochlear implants look a bit more remote at this stage. Let us all hope that she is able to come through this last round as well as she has weathered this one. Now there is hope for us that the final round may not inflict any more damage at all (hope, hope) and that would be wonderful! Let's all hang in there with her and watch this tough little fighter come through.
She has been doing well on almost all other aspects. She is starting to play again, her hair is just starting to grow back, and she is starting to look more and more like a normal baby. She still has to have her feeding tubes and has to have the nourishment replaced every four hours, but there are times when she can just be a kid. It is SO much fun to watch her play!
We'll hold off on updates until Monday evening (Tuesday morning) as there won't be anything new to report until at least then. We hope you all have a great weekend, as we will !
Tuesday, March 30, 2004
Nothing much to report for today. Addison has been more rested and actually got some sleep for a change. Her fever is gone and she is getting rested for Thursday.
The pictures of the wonderful Saturday night fundraising buffet are here. I don't have all the information for the pictures yet, so please check back in a couple of days and take another look. We want all the people who did so much marvelous work to get the credit for all their superb efforts.
Sunday, March 28, 2004
Last night was the fundraiser at Lobstermania and it was absolutely GREAT! It lasted until well after 11PM and people were so nice! The decorations were totally out of this world and the wonderful volunteers put out tons and tons of work. There were pictures of Addie all over every room (and I mean everywhere) and they were all high quality. The food was delicious, plentiful, and eye-catching. When we get the pictures back we'll put them up for you all to see and I'll explain more about all the extra effort that went into making this such a complete success. We want to thank everyone who showed their support (and those of you at home who couldn't make it, too) for your concern and love for Addison. You all give us the warmest feeling and you give us the strength to carry on.
As for Addison, the doctors were able to bring her fever down and she was allowed to come back home. After the chemo treatments which kill her blood cells, she has no ability to fight an infection and it must be done through drugs or a transfusion. It is very important that her fever doesn't rise faster than she can get medical attention or she could have serious injury or death. I just thought I would explain that as we had a question about our concern for such a small fever. Anyway, Addison was more rested today and has not been crying as much. This is still recovery time until the next chemo treatment. Please check back in a couple of days to see the party pictures!
Saturday, March 27, 2004
Addison began running a fever yesterday afternoon and the doctors advised us to bring her back in for a check. They think the fever is caused by an inflammation around the new tube they inserted as it is all red around the area and seems to be the most likely cause. They gave her something to ease the fever and sent her home. She is very cranky and sleepy from the treatments but we can see some improvement after yesterday, and certainly much better than Wednesday. Tonight is the fundraiser and we'll get some pictures if we have time.
Friday, March 26, 2004
Not much to report today. Addison is still sick from the "push" of chemo, and has been restless and upset and wants to be held all the time. Any move toward putting her in her bed starts her crying again. The good news is that she can stay home until next Thursday when she will go in for another "push" and some extensive hearing tests. They may wait for another week to do the hearing tests to see if there is any increased reaction from the chemo. After the hearing tests will come the big decision ... one more chemo treatment or deafness ... what to do? What to do?
If you can make the fundraiser on Saturday, we'd sure like to see you there!
Thursday, March 25, 2004
Yesterday was a TERRIBLE day. Addison had to return to the emergency room to get her tube repaired. They couldn't find the proper sized tube so they had to go and "steal" one from another unit. The tube is about the size of your little finger, and they had to punch a hole in her stomach about the size of a dime to get it inserted. Poor addison. She was screaming, kicking and trying to escape the pain, but they had to hold her down and try to comfort her while the insertion was carried out. It took about 15 minutes to get things correct, and since then the pain has been very bad. She still cries all the time and will only take a few minutes of a cat nap before crying again. She has about a two inch clamp sticking out of her chest so she can't lie on her stomach. She can't stand to be put down anyway, so everyone takes turns holding her while she whimpers. No one got any sleep last night. Since the tube was out she didn't get any food for almost a full day and she has lost almost a pound. She is on her way to the hospital to be checked again AND to start her next heavy duty round of chemo. She is going to be very, VERY, sick tonight, and VERY upset. This poor tiny thing having all these big people hurt her ... We know it's for the best, but we can't stop our tears, either.
Wednesday, March 24, 2004
Tuesday night around 8:30 PM Addison was just left alone for about 30 seconds, and she rolled over and pulled out the tube inserted into her stomach. A call to the doctors told us to bring her up to the Emergency Room in Providence right away to have the tube re-inserted (the other two were fine). Addison was quite happy about the whole deal, although driving 45 minutes and then a long wait in the Emergency Room was certainly not fun for the adults. Addison enjoyed the trip and I suppose that made it ok. However, it just reinforces the fact that she must be watched always. Now, if we can just catch up on some sleep . . . .
Tuesday, March 23, 2004
Addison is REALLY enjoying playing in her bouncy swing and with her music toys with the flashing lights. She bounces up and down, up and down, and just radiates happiness. Her nausea bouts are getting less frequent the further away she gets from the chemo application. She is, however, getting very possessive of Mommy. Every time Mommy leaves the room, she gets upset. You would think with all the constant attention she gets she wouldn't care, but she does. These pictures were put up two days ago, but if you have not seen them, click below. (Also fund raising info at: Fund Raising )
New Pictures - Click here
Saturday, March 20, 2004
Addison came home late yesterday and is sleeping in her very own bed for the first time in a LONG time. The equipment arrived unexpectedly and allowed her to leave the hospital. What a pleasure to be at home, to sleep in your own bed, to have your own "stuff" and to really just "be back home." If you have every been away on a trip you know exactly what I mean! Wonderful!
We think that the latest plan is that Addison will be evaluated after the next round of chemo and her hearing will be carefully assessed. If there is minimum hearing loss, she will get yet another dose of chemo, but that should almost insure her being cancer free. If she has hearing loss, they will estimate the loss and decide to treat again or not. If they treat again, she will surely lose her hearing but will be cancer free. If they do not give the last treatment she will stay at the hearing loss, but will incur a 30% possibility of the cancer recurring. The choice will not be easy, as you can well see.
There won't be much to report for a few days, so we hope to see you back then. (Fund Raising Info)
Friday, March 19, 2004
Addison is well into her next round of chemo, and is waiting to be released to go home until the next round. Unfortunately, the necessary equipment for all her tubes is not available and probably won't arrive until Monday. She can't go home until the equipment has arrived and is set up. It looks like another few days in the hospital for everyone. Addison seems to be holding up well this round, certainly better than we anticipated. She will get a battery of tests tomorrow, primarily for hearing and blood work. She will most likely need another transfusion as she has needed on the other rounds. The next update will be when Addison heads home, probably on Monday afternoon.
Wednesday, March 17, 2004
Addie rested yesterday after getting her chemo. She is starting to get sick again, and this is going to be a very, very hard round. She has to stay in the hospital for observation for a few more days but she will then be able to go home and gain strength to face the next round. There probably won't be much of interest for a couple of days, so please check back in then.
Tuesday, March 16, 2004
Addie began her next round of chemo late yesterday afternoon. It was difficult to see the poison dripping into her tiny body, especially as she has been so playful and full of spirit lately, but it is for the best. Doctors say that the chance of recurrence is about 70% without the chemo, and about 30% after another two rounds. With percentage changes like that, it just doesn't make sense to avoid the extra treatments to save her hearing. Moreover, IF the cancer should return, it would be much more resistant to treatment. We'll just have to hope for the best.
There will be a fundraiser on the 27th. See details here, or click on the link at the far left. Please plan to attend if there is any way you can make it. It's on a Saturday.
Monday, March 15, 2004
This update is being prepared on Sunday evening for Monday morning's report. Addison has really been fun today! She loves the "Itsy, Bitsy Spider" and wants to hear it over and over. She has started to grow a bit of eyelashes, eyebrows and hair since it has been so long since she's had her chemo. She is now up to 15 lbs. and is trying to sit up (well, not much, but it's fun to watch her try.) She slept for about six hours last night which was a real record. Since Addison is doing so well, Mike and Stacey were able to go home last night and sleep in their own beds for the first time in a LONG time while Nana sat in. As we understand things now, each chemo treatment is specifically tailored to the patient and the type of cancer. The liver cancer that Addison has requires the strongest chemical treatment, and that is why she will lose her hearing. Other cancer patients can have other side effects, but this particular treatment manifests itself in hearing loss. We are all thinking that with the advances in hearing aids, and the fact that she can wear long hair, she may come out of this with minimum effect. She is still draining from the tube out of her stomach, so they have been holding off chemo. Perhaps they will start on Tuesday, so please check back in then. You are all so kind to continue your interest in Addison.
Friday, March 12, 2004
Today or tomorrow Addison will begin her chemotherapy. The chemical they will be using is the strongest one available, and will, hopefully, seek out every stray cancer cell in her body and kill it. The chemicals will do an excellent job preventing a recurrence of cancer, but will make her deaf. With the present hearing loss she already has from the weaker solutions, the doctors are certain that her hearing loss will be permanent. We are looking into implants for later on, but there is still much research and many decisions to make on this yet. This will have to wait until the chemo is over. Although we're all heartbroken, we must focus on the good news that she will have an excellent chance of surviving, and, as you know, there are many people who live full productive lives in the silent world. With Addison's fighting spirit and her will to get through anything, we know that she can come through this, too.
Thursday, March 11, 2004
Today, Addison's doctors said that we have almost no choice except to make her deaf with two more rounds of chemotherapy. If she doesn't get the two additional treatments, there is almost a sure bet that the cancer will return. But, if they give her the treatments, there is almost a sure bet that she will become deaf. (She has already lost much of her hearing in one ear.) Due to our concern, the doctors will delay treatment for another day to see if there is some information they can find from other locations and other doctors. Perhaps some of the newer, less invasive treatments are showing promise. Perhaps there is someone with experience in this dilemma that can give us some good advice. We hope so. If not, the chemo treatments begin Friday. There have been many tears shed today.
Tuesday, March 9, 2004
Today Addison will have her tests completed before chemo. The hearing test yesterday showed that she has already lost some frequencies in her left ear. She can't hear the "th" and "s" sound and there is great concern that when the chemo continues on Thursday she may become deaf. Although the chemo was supposed to start today, the doctors need at least two more days to check the drainage from her bile duct to insure there won't be any leakage of the poison. On another note, her stomach seems to have healed just fine! If you didn't read yesterday's message, see it for a link to some pictures.
Monday, March 8, 2004
Today Addison will get a battery of tests to establish a baseline for her condition. One of the scary problems is that as she starts her seventh chemo, she will have a greatly increased probability of going deaf as one of the side effects. We're in a frustrating position in that her markers show no cancer, but if there is one cell that escapes, she could have to start this all over again. However, giving her the chemo treatment to kill any stray cancer cells may make her totally deaf. The decision then becomes choosing the option that will cause the least damage. In the meantime, there are some new pictures of the "birthday girl" so click here.
Sunday, March 7, 2004
Things have been rather quiet for the last few days as Addison gains strength for her coming chemotherapy treatment now scheduled for Tuesday. She is as cute as a button and cannot know that she will be sick again next week. Her blood work is holding steady so the leakage appears to have repaired, and another day or two will confirm things. Please check back in on Tuesday around noon when we should have news of her chemo treatment.
Thursday, March 4, 2004
Early this afternoon they removed the tube from Addison's stomach as the drainage was slowing down. Although we anticipated it would be there for several more days, the doctors felt she was progressing well and they took it out ... a good sign! She is up to 14.5 lbs. now and is sleeping better (which is great for everyone). Addison must be totally healed before they start chemotherapy again so that none of the chemicals can leak out and burn her tissue. Until they are sure, they won't start the treatments.
There will be a fundraising buffet dinner for Addison at the Harborside Loberstermania on Saturday the 27th. More details will be posted here as soon as they are available. Please plan to attend if you can, it will be a very nice event.
Wednesday, March 3, 2004
Addie still has something going on inside that is puzzling. She is leaking bile and doctors had to cut another hole into her and insert a drainage tube. So far they have removed about 100cc. Today they will do some more evaluations to try and find the cause of the leak. Other than that, she seems happy and alert, so perhaps her birthday party yesterday cheered her up? Read the Providence Journal article by clicking here: Use your "back" arrow to return here.
Tuesday, March 2, 2004
Addie had a GREAT birthday party yesterday and really enjoyed the balloons and all the attention. She is starting to look much better and take more of an interest in what's going on around her. Members of TV and the press stopped in to join many of the wonderful doctors and nurses who attend to Addie. It is so heartwarming to know that although she has some tough days ahead, the path is now clear and the worry about her survival is diminishing rapidly. Please check back on Thursday when we will know if she starts chemo on Friday.
Monday, March 1, 2004
Today is Addie's Birthday! There will be a party in the hospital family room at 1PM to celebrate that she has made it to one year, and that her prospects are starting to look so much brighter. Several TV stations and papers have called to get the details and have said that they will stop by for the party.
Addie is back in her own room now and is starting to play again. Her vital signs are good except for her white cell count, but that appears to be from a slight infection. Tomorrow she will get some further tests to see what's going on, but the doctors are not worried. Addie weighs over 13 1/2 pounds at one year old. Whee!!!
Sunday, February 29, 2004
Things are holding about the same today. Addison's hemoglobin count is holding steady, showing that she is not losing any more blood. However, her white cell count is indicating that she is either fighting an infection or is having other problems. This is causing the doctors only some mild concern at this state and they say she may move out of intensive care later today. Other good news is that her cancer marker is normal, indicating that there are no cancer cells starting to grow again. If this continues she will truly be cancer free, however, they still plan to give her two more chemo treatments "just in case."
Saturday, February 28, 2004
Addison continues to recover from all the intrusions. She has been sleeping a bit longer and is starting to look around and be herself again. There really isn't much to report right now of interest except that she is doing as well as expected. The plan is to start her on her next chemo treatment the later part of next week. We can say goodbye to her fuzzy top and her eyelashes.
Friday, February 27, 2004
Well, good news! The doctors stuck a needle into her stomach and withdrew some blood. It turned out to be "old" blood, and with that information and the fact that her blood count remained high, they have decided NOT to operate again! Phew!!!! She will stay in the intensive care unit for one more day just to make sure things are going ok, but they are sure things will go well. For another procedure they tried to give her some food by mouth, but that didn't last for a second. She tossed up everything right away and it appears as if it will be a long time before she learns to eat by mouth.
Thursday, February 26, 2004
About 8:30 yesterday evening we got word that Addison's blood count is holding steady after the blood transfusion. If it continues to stay up today, she will not need another operation! Boy, this up and down condition is difficult to handle ...
If anything significant occurs today the update will be posted here.
Wednesday, February 24, 2004
More turbulence ... Addison returned to her normal room from ICU yesterday, but was restless and up every 20 minutes all night long. This morning her hemoglobin count was way down, so they had to give her a blood transfusion. Her blood is pooling and they don't know why. They suspect her spleen is engorged (possibly old blood) and that is why she is gagging. She had another x-ray and ultrasound this morning and those results will be compared to further tests late this afternoon. If things are equal or better the doctors will wait and see. If the problem gets worse, Addison will have to have another operation to repair the leak, wherever it is. The doctors are perplexed and concerned because bleeding usually occurs directly after surgery, not several days later. Check back tonight for further updates.
Tuesday, February 24, 2004
Not much going on today. Addison had an x-ray to check how things are progressing but the results won't be back until tomorrow. She will be released later today from intensive care to return to her "own" room upstairs. If you have not checked in for a few days, please see the entries below.
Monday, February 23, 2004
Addison is awake, alert and already starting to play around again. They extubated her late yesterday morning, and lowered her pain medication this morning. By tonight or tomorrow morning we anticipate her being moved out of intensive care back up to our normal room on the oncology floor, where she will continue to recover until such time as the next round of chemo can begin. See the article by Steve Peoples of the Providence Journal by clicking here. See new pictures here.
Sunday, February 22, 2004
Addie has been pretty much "knocked out" as they wait for her esophagus to heal. She's on a respirator to help her breathe so it's good that she isn't restless right now. We're just waiting until they can wake her up in a day or two. There is a new article by Providence Journal staff writer Steve Peoples at http://vogls.com/projo3.htm and it's also listed on the "links" at the left side of the web site. Thanks to all of you for caring support.
Saturday, February 21, 2004
Today Addison is mostly still knocked out from the operation and the doctors want to keep her that way for about three days. Her esophagus was so damaged that they don't even want her breathing on her own. They have her on a respirator and want to keep her sedated until she can take over. Other than that she seems to be doing ok so far. She can open her eyes but you can tell she's still "out." If there are any changes we'll post them as soon as we know.
Friday, February 20, 2004
1:30 PM - The operation went great! They say she came through like a champ, and is now awake (but very groggy) and starting her recovery. Doctors said her stomach was VERY twisted and it took longer than expected to get it into its proper place but they found that her liver is regenerating nicely. They fixed the leaky spot so that should repair soon. As a precaution they took another biopsy of one suspect spot on her liver, but they don't think it will amount to much.
They also found that her esophagus is damaged so they opened it up a bit to allow food to pass more easily. She has another feeding tube into her stomach so she can get nourishment and she'll be on a respirator for two to three days to help her breathe.
After her recovery from this surgery she will start the two months of chemo, and then another six to eight months of learning how to eat. Until then she will have to have the feeding tubes into her to keep her alive and she will have to be watched closely so she doesn't yank them out.
Everyone is pulling for her and this certainly looks as if she is over the hill and starting to pick up speed. HOORAY! We are all so HAPPY!
11AM - She has about one or two hours more to go in the operating room, but her progress is good. Her stomach was ALL twisted and upside down, but they have repaired that. Now they need to seal her liver and anchor her stomach so it won't twist again. They also took a piece of her stomach to test for residual cancer.
10 AM - Addie went into surgery at 8:30 this morning. She was laughing and totally animated as she went out of the room, smiling at everyone and having a great time. There are about ten concerned people waiting for her to return to her small hospital room, including the local press. Check back later this afternoon for Addie's condition.
Thursday, February 19, 2004
Addison will start surgery early tomorrow morning. The operation will last up to four or five hours so we should have a progress report around noon EST. Her doctors will fix the leaking bile from her liver and will straighten and restore flow to her stomach. Let us all hope that this is the last major operation she will have to undergo. Please continue your support over the next few days as she undergoes, and then recovers from this latest round of surgery.
Friday, February 13, 2004
We got word late this afternoon that the doctors were unable to repair Addison's stomach and she will have to undergo her third major operation on next Friday. Her stomach is so twisted that there is no way to get it straightened out just by pushing it. By waiting a week they can also see the progress on her leaking liver, and they will most likely have to repair it at the same time. As soon as she heals from the operation they will start the next two rounds of chemotherapy. We are all disappointed that she will have to have another operation, but it's the only way to get these problems fixed.
On the positive side, as previously explained, she is as happy as she can be. She feels great, looks great, and is belly laughing at her toys as never before. She is just so cute .....
There won't be much more to report until next Friday.
Friday, February 13, 2004
I guess it is in fact Friday the 13th, and today is not a good day. As you know, Addison has been unable to eat anything and has been kept alive only by the tubes into her body. The doctors have given her several barium x-rays to find the reason she cannot digest food normally, and they now think that since so much of her liver was removed, that her stomach is "floating" rather than being anchored. It has become twisted and won't allow food to pass. There is nothing for the muscles to push against to keep the food moving. For a comparison, she only gets about one cc. of fluid through, and she should be able to process over 60 cc per hour. She is not even close to being able to survive by eating normally. So, tomorrow they will try to force her stomach down into a position that will give it some anchor by passing a probe through her nose into her stomach and pushing it down. Unfortunately, they only expect a 50% success rate for this procedure. Another problem is that her liver continues to bleed at the same rate it has been, rather than gradually healing. This must be repaired before they can continue any further treatments. Therefore, if the stomach movement procedure is ineffective, they will have to do another major operation to repair the liver and simultaneously move her stomach to fix the digestion problem. After all this is repaired they must start her on chemotherapy immediately. The longer they wait, the greater the chance of a cancer flare up again. She is definitely between a rock and a hard place.
On the converse, since she has not had the chemotherapy for a few weeks, she is happy, alert, playful, and as cute as a button. She received another blood transfusion today so she looks pink again instead of pale, and she looks like a normal baby (except for the hair). Now, if she would just sleep longer than 25-30 minutes at a time, Mike and Stacey could get some sleep at night, too.
Please check back tomorrow to see if we have the results of the stomach correction.
February 10, 2004, Tuesday
The course appears set to solve three major problems Addison now faces. First, the drainage from her liver must heal. She cannot get chemotherapy while the liver is still under stress, so the doctors will wait for a week or two in the hopes that the cut will heal. If it has not, they will have to operate yet again to seal the liver. Secondly, they are concerned that chemo must begin within a week or two or any residual hidden cancer cells could start to grow and spread. Therefore, she must begin another two rounds of chemo as soon as possible. Following the two months of chemo they can concentrate on getting her GI tract to work again. Since her birth Addison has yet to take any food by mouth and obviously that cannot continue. Solving this problem could take anywhere from a month to a year, so the possibility of her living with feeding lines for this time is not remote. Doctors will give Addison several tests today to establish her chemo dosage and the best schedule for delivery. Please check back in a couple of days for further updates.
See yesterday's update (below) for new pictures.
February 9, 2004, Monday
Addison is now in Hasbro Children's Hospital in Providence after an exhausting day of travel yesterday. There are some new pictures at http://vogls.com/postop for you to see.
February 8, 2004, Sunday
Today around noon Addison will return from Johns Hopkins, but will go directly into Hasbro Children's Hospital in Providence rather than coming home. Her liver continues to heal, although very slowly, and she needs to be watched closely for any possible complications. At this time we think that the chemotherapy will be delayed until she shows more progress, but that will be decided later next week. We'll have further updates after the doctors take a look at her tomorrow morning.
February 5, 2004, Thursday
Not much to report today except that the doctors are marginally satisfied with the way Addison's liver is healing. To avoid another operation they will release her from Johns Hopkins to Hasbro Children's Hospital in Providence for further observation. We hope to have her home on Monday the 9th until she starts the next round of chemotherapy on Thursday.
February 2, 2004, Monday
Well, we hit the first speed bump already. Addison's liver has been draining quite a bit of fluid and it should be healed by now. The problem is, that if it doesn't heal, the doctors will have to operate again to close it up. The current thinking as of this afternoon is that they are going to wait until Thursday to see if it has improved. If it has, Addie will be released to return home to RI and be monitored by the hospital in Providence. Other than that she is doing quite well and is smiling, laughing, playing with her toys, and is really enjoying not being so sick from the chemotherapy. If she is allowed home she will start the next round of chemo on Thursday the 12th. We will wait and see what happens.
January 28, 2004, Wednesday
NO MORE CANCER !!!!!
Today we received the hoped for words we were all waiting for, and things couldn't be better! The pathologist examined her liver tissue, pronounced it clean, and Addison is cancer free!!! She will be released from the hospital on Sunday or Monday and will be able to go directly home without even having to go back into the local hospital. However, she may have one or two additional chemotherapy treatments, depending on what the doctors find in the next week or so.
We are all elated at this news and are so happy to share it with all of you who have been so involved and so very supportive of Addison and all her tribulations. This is not fully over yet, but we are absolutely on the home stretch! Our ability to carry on is largely due to your unwavering support with your emails, cards, letters and financial support. All of your help greatly eased our anxiety and allowed us to get through each day. Words are insufficient to convey our gratitude, love and the bonds we feel with each and every one of you.
As we continue through the recovery process and meet unknown challenges, we know that they will only be speed bumps on Addison's road to spectacular growth and a wonderful, happy life.
Please check back frequently for more updates as we will try to keep everyone up to speed on her progress. All of us feel that each one of you is now part of Addison's extraordinary, special, and loving family.
HOORAY FOR ADDIE !!!!!!!!
For pictures from yesterday, click here:
January 27, 2004, Tuesday
We are waiting with cautious optimism as Addison was able to avoid the full transplant. Addison's surgeons believe that when they removed about 70% of her own liver that they were able to cut away all the cancer. They took some samples at the far edge of the cut and have sent them to pathology for detailed evaluation. IF the pathology does not show any live cells, Addison will be able to continue with two more chemotherapy treatments and then will be on a close watch only. If the pathology shows that there are live cells still in the tissue, we will have to go all the way back to square one and start looking for another donor liver. Needless to say we are all fervently hoping that the examination will NOT reveal any live cancer cells. We believe that the tests should be complete by Wednesday evening or Thursday morning. Until then we are all "up in the air" waiting.
We have some pictures taken today, but on a dial up service it will take several hours to load. I will try to get them up later this evening when I have better internet access.
So, we will all wait and hope that the tests are fully favorable and that by Thursday Addison will be able to begin a new life cancer free.
I will get updates posted as soon as I can.
This is great news, at least for now!
January 25, 2004, Sunday
We were notified at around 2 PM that a donor organ would probably be available. As of 6 PM Addison's surgery should begin. The operation could possibly last as long as 18 hours, but with luck it will be much shorter than that. Computer availability may be a problem but I will try to update the site as soon as I can. Let us all hope for the best. It is comforting to know that all of you are with us.
January 24, 2004, Saturday
Some discouraging words today ... Stacey is not a match for Addison and the surgeons will not be able to use part of her liver for the transplant. We will now have to wait for a donor organ.
January 23, 2004, Friday
WWBB-FM 101.5 held an auction this morning and raised almost $1,500 for Addie! Thank you to all the wonderful people who joined the bidding and made this such a successful event. If you didn't participate in the auction, or didn't win but would still like to help, please see the contact address at the bottom left.
At Johns Hopkins, Stacey has undergone two days of intense testing to check her liver compatibility. It will be a couple of days until the results are returned. If she is a match they will take a biopsy to perform the final suitability test. In the meantime, Addie waits for a donor organ should it become available sooner.
January 21, 2004, Wednesday
Radio WWBB-FM 101.5 is having a fund raising raffle of two signed footballs this Friday Morning, January 23rd, from 8am-9am. Please see the details at: http://www.b101.com .
January 20, 2004, Tuesday
See Providence Journal Newspaper Article (Link on left)
January 18, 2004, Sunday
Mike and Stacey will travel to Johns Hopkins tomorrow for an initial round of testing and blood work to insure that Stacey is the best match for Addison. There are many hurdles to go, but the plan is now set. They will remain at the hospital until the donor question is settled and the operation and recovery are complete.
The doctors plan to inspect Addison's liver with the hopes that they will be able to scrape away all the cancer without further cutting. If that is not possible, the next procedure will be to try and resect the bad parts and still use her own liver. The last choice will be to do the transplant.
January 13, 2004, Monday
Johns Hopkins requested that Stacey and Addison come to Maryland on Monday the 17th and check into the hospital for tissue matching tests. They anticipate that while an external donor may be available next week, they would like to match Stacey as a backup.
Two generous people have offered to provide air transportation to the hospital and return.
Addison's chemo dose today (12 January) was reduced by half as the doctors believe the cancer has shrunk about as much as it ever will. Continued high doses of chemo pose an increased risk for Addison's health. The decision to cut the dose was difficult to make as the results could go either way.
Once again we must thank the hundreds of generous and giving people who have offered support for Addison. The outpouring of affection and the contributions have greatly eased the burden of caring for this beautiful child.
Please check back every so often to get the latest updates.