Journal History
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Friday, March 17, 2006 9:08 AM CST
Happy st patricks day all. I know I dont update very often but i hope you all realize that no news is good news. Ayden is doing very well and is enjoying school alot. He is still alot more active then your typical 4 year old but we are working on that. Bryce and Colton are also well, besides the odd cold here and there everyones health has been pretty good this winter.
We are all waiting patiently for spring to arrive as we are pretty much done with our winter activities and would like some warmer weather. The boys are still in hockey for about another month, Coltons team has won both of their playoff games so far 7-0 so if thats a sign of how the rest will go, a chance at winning the year is pretty good. Colton had his end of the year hockey party and won a medal for most improved this year. He has really gotten very good over the past year, and like his coach said, finally realized he could outskate pretty much everyone on the other team and get a goal.
Well not much else in new in the Pynn family I have updated some photos so check out the photo page
God bless
Josie
Thursday, December 1, 2005 8:02 PM CST
Hello and welcome,
thank you all for stopping in. Today I have included some very important information about Lunch for Life. Ayden and our family are one of the 200 families fundraising for Lunch for life. Please read on and if you are interested in donating in Aydens honour visit www.lunchforlife.org You can choose his name in the drop down list and also enter the giving tree code 14240.
Lunch for Life is about children. Our children have been diagnosed with Neuroblastoma, a particularly deadly form of cancer that strikes thousands of precious infants and toddlers each year. To make matters worse, research funds have been traditionally scarce for pediatric cancers like this one, which makes finding a cure next to impossible. Until now..
Lunch for Life is a simple but powerful solution. We are asking everyone to donate one day’s lunch money to help fight this disease. Funds raised through Lunch for Life go to Children’s Neuroblastoma Cancer Foundation (CNCF), a public charity dedicated to curing this deadly cancer. Each year, CNCF distributes this money to fund promising research projects that are making progress in learning more about Neuroblastoma and finding a cure..
Three short years ago, there was no Lunch for Life®, and there was little reason for hope. But thanks to the effort of desperate parents, and a small community of family, friends, and doctors, the idea began to take shape, and the initial results are already changing the way we understand Neuroblastoma. Now, with the possibility of their research efforts being funded, some of our brightest medical minds are turning their attention toward this disease. It’s a once-in-a-lifetime chance to finally make a breakthrough against a disease that has taken a horrifying toll on our children.
The cost of one lunch, if enough people contribute, can win this war. It is such a small price to pay, but it can and will save precious little lives. Please donate your lunch money to the Children's Neuroblastoma Cancer Foundation and help us eradicate this disease. Give a little money. Spread the word. Save a lot of lives.
Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).
The Giving Code allows you to earn bonus ornaments for a tree by passing on the code to your friends. They will be able to donate their money in honor of any child they wish, but by entering your Giving Code, your chosen tree will receive a bonus ornament for each ornament they donate. For example, when I donated $15 in the earlier example, I received a Giving Code of 123456. I emailed that to several friends with the encouragement to donate to a child’s giving tree, and told them to enter my code so I’ll get bonus donation credit. One of my friends gives $10 toward a different child’s tree, which buys 2 ornaments for that tree, but because he entered my code while making his donation, it places 2 more ornaments for free on the tree I chose. He’ll then get his own code that benefits his chosen tree, which he can pass onto his friends, and so on. This way, for every friend or family member you get to donate, you’re giving that much more in prizes and contest entries to your chosen child. Talk about happy holidays!
Finally, on December 25th, we will hold a virtual drawing, where each child has a chance to win the trip to Disney World. For each $5 donated in that child’s name by midnight Pacific time on December 24th, he or she will receive 1 entry in this drawing. For example, if $5000 total was donated in a child’s name, then that child would have 1000 entries in the contest. Each entry is assigned a unique number, and the computer will randomly select one of those numbers at Noon Eastern time on December 25th. We will post the winning number to the website immediately following the drawing, and the child associated with the winning entry will receive a free, all expenses paid trip to Disney World, including airfare, lodging, tickets to the theme park and shows, special front row and backstage passes, and many, many other perks!
Wednesday, November 2, 2005 11:58 AM CST
Hello everyone and thanks again for stopping bye. Things around here are pretty quiet. Ayden is enjoying school very much and wants to go every day, so its hard to explain to him that he only gets to go every second day. Bryce is fitting into grade one very well and loves school too. Colton on the other hand is having a rough time and even got suspended last week for three days. He is going through a tough time right now, weather it be puberty or what its tough around here dealing with him. Aydens health is good besides an infection in his male parts two weeks ago. Hopefully he wont get anymore or they said they will have to circumsize him and i wouldnt wish that on him. His cough has started for the winter months but so far he hasnt gotten too bad and with his singular and puffers he is handling it real well. All the boys went out for Halloween on Monday. I will try to attach some photos so you can all see how big they are getting. Other then that not much else to say. Keep in touch.
Josie
Wednesday, September 14, 2005 10:16 AM CDT
Hello everyone. Sorry it has been so long. So much has changed in our lives and I have not been near a computer to let anyone know. I will be getting my computer up and running soon so I hope to update again more often. Well since Dec, Bill and I have split. It is actually working well for both of us and we are good friends. The kids are handling it pretty good as they see us get along alot more now. Ayden just started jr kindergarden on Monday and so far likes it alot. He will be going every second day for the rest of the year. Colton is now in grade 5 and Bryce is in grade 1. Ayden health wise is doing great. We dont see the oncoligist again till June 2006 unless we have any problems. This was great news for us. Ayden is still dealing with his cough and asthma but we are so used to this now that we dont really notice it anymore. I am hoping he doesnt pick up too many virus' this year at school that add to the cough. His hearing is getting alot better and we hope to pass the next hearing test as he passed his last one with flying colours. The winter cough might affect that but I am thinking of taking him to get his ears candled which will help with the buildup he gets in his ears and its not invasive at all. Well since I am not at home I will end this for now. Hope to get online soon and catch up with everyone.
Josie
Sunday, December 26, 2004 10:48 AM CST
Merry Christmas everyone
Sorry I havent updated in so long. I have been back to work since sept and keeping very busy once again. I really dont get on the computer too much. All the boys including Ayden are doing very well. Ayden of course still has his cough which worsens in the winter but that has become a fact of life now and he is very used to it. Bryce is enjoying sr kindergarten alot, Colton is now in grade four and likes it. He was just recently diagnosed with a learning disability so now he will get all the extra help he has actually need since kindergarten. It took the school board a long time to get around to testing him but now that he is diagnosed he will get the extra help he needs right through high school. I cant beleive that Ayden will be starting JR kindergarten in Sept. He is still my little baby. Bill and I both find he is still behind a little but hopefully when he goes to school he will catch up quickly. Here in the lovely city of Pembroke we have so much snow for christmas that I dont think it will ever melt before summer. Its great as we havent had alot of snow for a long time. The kids enjoy it alot. I just pray the minus 40 degree weather doesnt come back as it is way to cold to enjoy the outside.
I want to once again thank all you wonderful ladies from bears who care. All of the boys enjoy getting all your mail. It makes them feel so special. Each time something comes no matter what it is they love opening it to see who it is from. Thank you all so much for making their days.
Ayden hasnt been to an appt at CHEO since august. He is doing great. I have finally come to the conclusion that all the things we were putting so much effort into trying to figure out, are just him and we are all learning to deal with it. Ayden started using the potty for the first time about two weeks ago and is picking it up nicely besides at bedtime. We also finally got rid of the baby soother as I told him I had to take it to work to give to the babies at work. He is having a rough time sleeping without it, but I am sure he will get used to it in time. At three years old I figured he had it long past when he should of so no more.
Well not much else is new in our household. We are all busy busy with work and family life. Once again a special thank you to all you wonderful ladies out there who keep in touch.
Merry Christmas and a Happy New Year
Josie
Thursday, August 26, 2004 12:39 AM CDT
Hello again everyone and thanks for checking in. Everyone here is doing good. Colton and Bryce cant wait to go back to school and neither can mom. Ayden has had two appts at cheo in the last week. The first we met with the repiratory specialist who is sure that Ayden does have asthma. He did notice something in Aydens past CT scans about his lungs that he wants to look into a little further so we had a chest xray and wants me to come back in a couple months and see if the new puffers and medication is making a difference in the cough. We then meet with the pedetrician who wants to do more stool tests to look into the diarehha. I am pretty sure we have done all these tests many times over but for some reason she thinks she might find something eventually. Who knows. We will see i guess. We also went this week to the ent and the audiologist Ayden finally passed his first hearing test ever!!! He has a little trouble with high frequencys but that is not a problem. He still has little function in the right ear drum but they think his tube is probably still blocked and it doenst affect his hearing so that is fine. The ent doesnt need to see us for 4 months now either. So all in all we have gotten some more good news other then still not having answers on the lack of weight and height but that is again a small issue.
Well things here are looking up. Finally found out why I havent been doing any better but worse. I have been diagnosed with bipolar not just depression and with that just the meds I was on dont work. I have now been on new ones for a week and a half and I am starting to see that light at the end of the tunnel. Its been a long struggle but I am making it now.
Thanks again for checking in. I will update when I have something new or interesting to say not much changes around here. God bless
Josie
Friday, July 9, 2004 9:59 AM CDT
Hello everyone. Once again it has been a while since i updated, my computer is getting very old and doesnt want to work the way it used to.
Ayden is doing well. We had out appt with the oncologist a couple of weeks ago and she said everything looks great. We dont have to go back for a year!!!! That sure makes us feel good about never having to deal with his cancer again. It is kinda scary though knowing that it is going to be a whole year before he is checked again but I have to keep reminding myself this is good news and he is fine.
Another good report is we no longer have to see the speech and language therapist every two weeks. He has picked up so quickly that it will be 6 months now before we see her again. His speech has went from almost nothing to pretty much him saying everything he can possibly say in just a matter of months. He is no longer delayed and had caught up to almost right where he should be.
As for the cough, he still has it and it is still getting worse. He has been having fevers on and off with it so i am hoping he is not going to end up with fluid in his lungs or something. We are watching him closely and have an appt with the respiratory specialist in Aug. Another issue is his weight gain. We had taken him off the formula and special diet in Nov when he turned two and have now found out he has not gained any weight or height since then. Doctors are once again testing him for celiac disease as they say it can sometimes take yrs to diagnose. We are still a little concerned about the weight and that he gets the bouts of diareha quite a bit still. But all in all these are just small things compared to the cancer so we are happy he is as well as he is.
Mom on the other hand has had another round of major depression for some reason and ended up in the hospital last week with as the doctors put it a nervous breakdown. It has been a tough time for me lately and I am hoping the doctors can help me with this real soon. My body has been physically affected by this alot and I have been off work now for 4 weeks. I am not sure when i will be able to go back as this past week was I think what they call rock bottom. I guess there is no where else to go from here but up. I am finding it very hard with the kids but Bill has taken them all to NFLD for two weeks so that gave me some space. Not sure yet if that was a good or bad thing. They will be home on Sunday or Monday.
Well that is about it on this end. Please keep our family in your prayers as I know if it will help we could really use it. Thanks again for checking in
Josie
Sunday, May 30, 2004 9:09 PM CDT
Sorry everyone that I havent updated in so long but yes no news is good news. Ayden is doing great. He has seen the speach and lauguage girl 3 times now and it is amazing how quickly he is picking up things. He is still behind in some things but in a matter of 6 weeks he went from saying a few words to acutally putting together 3 and 4 word sentences. It is really amazing to see how fast he is picking up, now that he can hear better. We have an appt at Cheo in two weeks for his ultrasound. I am sure he will be happy that is not a CT the ultrasound should not take long and we get the results right the same day I think cuz our appt with his doctor is that afternoon. The only issue now is this silly cough. It seems to be getting worse so I am going to try to get in with the respirtory specialist we saw last summer who thought he might have asthma. We didnt go back when the ENT said the cough was caused by the scar tissue in his trach but I think maybe he still might have asthma as now he wheezes alot especially when he is running around.
The other boys are doing great and enjoying some of the nice weather we have had around here. I wouldnt say it is summer weather yet as some days its 25 degrees and some days it is like 2. I hope those 2 degree days hurry up and go away.
I have been busy with work and putting in my garden to keep me busy. Now that I can actually get outside and do things I am starting to feel a little better and think I might we coming out of the rut I have felt I was stuck in. I actually took the kids to the park the other day for 3 hr then spent the rest of the day outside with them at home. This is the first time in a while I could spend a whole day doing something and not hiding out in my room. Things are definately looking better. Saturday was my birthday so this weekend was filled with lots of fun and friends. I think we all need that so the focus is not on how old we are getting. I sure feel older then I am. I tried to tell everyone it was only my 21st birthday but it didnt go over as well as I had hoped just made me feel older.
Well nothing much else is new Thanks again for everyone stopping in. I do read the guestbook alot even though I dont put updates very often I still know you are all stopping by. Will try to update sooner this time
Josie
Saturday, March 20, 2004 5:20 PM CST
Hello everyone. Hope this finds you all well and enjoying the first signs of spring. Things at the Pynn household are good. Bill went back to work on Wednesday but as the rest of the base is on March break he was off at 11 everyday to spend time with the kids. They all enjoyed having daddy around for March break. Ayden and I went to CHEO on friday for his tubes. He did very well and the surgury only last 30min. He didnt even have to be intibated for it which I though was great. The ENT said the fluid and junk she found in his ears was amazing and that we should notice him hearing alot better now with the tubes. I already notice he is saying the few words he does say alot clearer. The speach therapist and I are still trying to connect. We have been playing phone tag for over two weeks now but I assume he will be getting the help he needs real soon. I took him to get his pictures taken at my studio on our way home from Ottawa as I want to look back years from now and say "that was the last surgury he ever had" I feel it only goes up from here as things all seem to be coming together. NO more CT's or MRI's and now his ears are going to better and the speach is in the works so I think this is pretty much the end of our long journey of sickness. Nothing compared to what it could have been thank god but Seeing the possible end is a moment I dont want to forget. When I get the pictures back I will be sure to post one so everyone can see how big he is getting. Weather here is on and off. Sometimes nice sometimes snowing. Mother nature cant seem to make up her mind lately. Colton and Bryce are looking forward to going back to school Monday. Well I think that is about it that is new around here. Thanks all for stopping by I love to see all those entries in the guestbook. I cant wait till ayden can look back and read all the wonderful things people have said and all the support and prayers he has had. Thanks so much.
Have a wonderful day
God Bless
Josie
Friday, February 27, 2004 7:37 PM CST
Hello everyone. Thanks again for stopping by to check on us. Yes Bill made it home from Afganastan and the boys were very excited to see him. He has been spending lots of time with them as he is off work till March 12th.
Ayden had his appt with the oncoligist and everything is looking good. As of now we will no longer have to go for anymore CT's or MRI. We are very happy about this as it mean less intibation and will give his trach a chance to heal a little better. We have an ultrasound booked for June for follow up now. Right now Ayden has a cold on top of his normal cough so it is pretty nasty. He sounds like he has croup most of the time but there is not too much we can do about it. He will have to be intibated for the surgury to put in the tubes next month so i am hoping after that with not as much intibation he will get over this cough. I spoke with the speech therapist the other day and we should finally be getting in to see them in at least the next two months she said. The waiting list is crazy around here. We have been waiting since August. I am so glad we got referred so early. If Ayden would have been a normal healthy child there is no way we would have been referreed for speach before the age of two, they would probably just have said he would catch up but since they knew his history the doctors were on it right away. I pray that 6 months from now Aydens little voice will be filling the house daily. The other kids are doing good. Bryce is really enjoying jr kindergarten and Colton is working hard to try to pass grade 3. The teachers dont think he will but he is giving it is all at trying. He is going to meet with a child specialist for some testing in Ottawa at the beginning of March. I am hoping he is not ADHD.
Well other then that not too much else is new. I am still having rough days alot. It is more of a day by day thing now though instead of a min by min so I guess that shows that things are going a litte better. I have decided to go and see a councillor at the beginning of march who can maybe put some light on how I am feeling so I dont feel so lost. So untill then I'll just be seeing how each day goes. I have been told it will get easier so that gives me something to look forward to.
Thanks again for stoping in. And again I do want to thank all the wonderful people at bears who care. The kids absolutly love getting all the mail. And so do I. I sure brightens my day to know so many people actually care about us. Thank you soooooo much
Josie Pynn
Saturday, February 7, 2004 10:54 AM CST
Well first of all I want to again thank everyone for stopping by and checking on us. I have received many little pkgs from all you wonderful people at bears who care. You guys all have hearts of gold and it mean so much. Dont forget to sign our guestbook before you leave we love to see who is stopping in.
Things here are pretty much the same. Ayden still has his cough and i cant wait till his appt in March to get the tubes. I am trying so hard to get him to talk and it probably wont work untill the fluid is cleared up. We have an appt with the oncoligist for a check up on the 18th and I know things will be great. Of course as all those cancer moms out there would know we worry about everything and the other day he was crying about pain in his leg again. I was a little worried but after our miracle with him in October I know he is fine and I just gave him some tylenol. He has been fine since. It might have actually been his ingrown toenails he was crying about. He has had a real problem with them since birth and it seems to be a constant thing we have to deal with.
Mom on the other hand is not doing as well as I should be. I am still having a really difficult time with depression and the death of Dominyck. I dont know how long it is normal to greive for but it feels like I will never be over this. She will be buried in the spring and maybe with some closure it will start to get better but as of now it is an every day struggle. One of my good friends had a baby on Wed and that was very hard. Sometimes I am happy for her and other times I cry because I dont have my baby.
Well not much else to report thanks for checking in
Josie
Tuesday, January 27, 2004
I would like to first say that our families deepest sympathy goes out to the family and friends of Corporl Jamie Murphy who died this morning as result of a suicide bomber in Afganastan. My husband Bill worked with Jamie daily for the last six months and is very shook up as he was one of the first on the scene. I ask for your prayers for Bill as he says he saw things today that will remain in his thoughts for a very long time. Secondly. Yesterday we received results from Aydens test of his kidney. Everything look great and we dont have to have another one for a year. We also met with the ENT who has decided to put tubes in his ears as the constant cough causes so much fluid that he still has hearing loss. We are hoping by the time the tubes come out he will have outgrown the scar tissue and wont be coughing so much. This should help him hear a little better and we pray he speach will come shortly after. Thanks again for stopping in.
Josie
Wednesday, January 21, 2004Hello everyone. I know it has been forever since I updated. I find myself so busy with work and the kids that I dont get much time on the computer besides to check email and guestbook entries. I want to say a great big thank you to Charlene from BWC as she sent us the most wonderful package in the mail. It actually brought tears to my eyes that a complete stranger had thought about us so much that she sent us a package. Thank you soooo much Charlene and family. I also again want to thank all the wonderful ladies who keep us in their thoughts and prayers and sign our guestbook. Even though Ayden isnt battleing cancer anymore we still appriciate the prayers and thoughts that are going to keep him cancer free for the rest of his life.
The lastest update on Ayden is not too much. He went for a test of his kidney last monday which to me was more torture to him then anything. They didnt even put him to sleep they just straped him to the machine and injected the dye and left me to entertain him for 30min while he screemed to get unstrapped. Then we had to go for blood work every 45 min for 3 hrs. Well No one on this planet has every had an easy time finding his veins. Each time we went it took over 20min to get a small amount of blood while they moved the needle around in his hand and pulled it out and back in again. ouch! Then the last time they had to use a vein they used the first time because they couldnt find anymore. Poor little guy. I was suppose to go to Cheo two days ago but they cancelled the appt with the ENT. I hope we can rebook it for next week as we have to go anyway to meet with the uroligist so making one trip would be alot easier.
The other boys are good. Bryce came down with strep throat actually while we were at Cheo last monday which was not very much fun, but since we were there anyway I took him to emergency and they gave me a precription. The pain only lasted about two days, but that was enough for a 4 year old. It was his first time missing school so he was very upset. I am praying Ayden doesnt get is as he already has that cough since November and doesnt need strep on top of it. I am hoping when we meet with the ENT she can give us some idea of what we can do to help him not cough so much at night.
Bill returns home from Afganastan around the 14th of Feb, so I am sure the boys will be very excited, we havent started counting the days as Bryce and Ayden both dont understand the concept of even a week so I dont think I will tell them at all just wait for the big surprise when Daddy shows up.
I guess that is about all that is new here. Please keep the Carswell family in your prayers as their daughter Tori at the age of 8 passed away Jan 16th. Also pray that 2004 is a better year for all those children battleing this awful disease. Too many have lost their battles lately.
Thanks again for stoping by and make sure to sign the guestbook
Josie
Tuesday, December 30, 2003 3:44 PM CST
Well I hope everyone had a Merry Christmas and that the New Year brings them happiness and healing for all those caringbridge kids I know. Our Christmas was quiet. Christmas night we went to a friends house for dinner then a friend of mine opened up our local arena for the boys to go skating. They thought that was great to have the whole rink to themselves. Boxing day we went to my mom and dads in North Bay and had dinner there and came home the next day. The kids had a good Christmas and loved the air hockey table that I bought them. Things have been good with Ayden. He still has the nasty cough for about 6 weeks now but it doesnt worry me too much this year as we know the cause is the scar tissue in his trach. Sometimes if the other boys have a cough Aydens seems to get alot worse and keep him up but good old adult buckleys takes the edge off I found out. He gets really mad when I give it to him but the kids stuff doesnt do a thing.
Bryce my 4 year old decided he was going to run away today because I told him he had to go to his room for stealing a box of crackers and eating the whole thing. I told him he could go if he wanted so he took two shopping bags, filled them with his new christmas clothes and toys and Fred the teddy bear, put his backpack on and out the door he went. His bags were so big he could barely walk. I watched out the window as he went down the driveway looked both ways and crossed the road. Then to my surprise he actually started walking down the road. He got about 2 house down where his friend lives and decided he would go there but they werent home. Next thing I see my other neighbour running over and picking up his bags and bringing him home. I bet he thought I was an awful mom for letting him run away but I did it many times when I was little and my mom never came after me. I actually wanted to video tape him to show him when he got older.
That is about the most excitement that we have had around here. I am working alot and still enjoying it. It has gotten really slow now that Christmas is over, no one wants pictures after christmas but hopefully it will get busy soon with new babies or something.
Again I want to thank all of you for stopping by it always means so much to see your entries in the guestbook. I will keep everyone updated on how Aydens appts go in Jan.
Please keep in your Prayers Brian and Chanda who lost their son Jake on Dec 18th to neuroblastoma. He would have been 5 in Jan. and the Carswells whose daughter Tori has also been treated at Cheo for neuroblastoma, the doctors have given her 3-6months . Also all those many families out there dealing with cancer or the loss of a child during this holiday season.
Have a Happy New Year
Josie
Friday, December 12, 2003 12:48 AM CST
Well hello everyone. Just wanted to let everyone know that Ayden is doing great. It was two years ago that he was diagnosed with Neuroblastoma. Funny how us parents can remember the exact date, exact hour for the rest of our lives. It has been a long two years but I have to thank God that I know how much worse things could have been. With all the sickness Ayden has went through in two years it is all so minimal compared to what he could have gone through. We dont have an appt at Cheo now till January, this means we will have spent 3 full months away from there. That is the longest ever! I dont remember even going a month and a half so three months is awesome. In January he will be meeting with the ENT to check out the scar tissue in is trach, this has been bothering him a little but nothing compared to last year, so that is a good sign he is outgrowing it. He will also meet with the Uroligist for a special test of his kidney to make sure it is functioning right. This is something we will have to do forever as he only has the one, and we will meet with the oncoligist and find out that everything is still great and most likely switch to every six month visits. Yaaaa. Well things around here are pretty busy with Christmas coming and all. The kids are very excited but I am not really in the mood this year. I guess with all the grieving I have been doing it is hard to get into the spirit of Christmas. Bill found out he might be returning from Afganastan early so we might have him home by the end of January. Great news. Nothing else much is new hear. Again I want to thank all you wonderful ladies who sign the guestbook and send me emails. It means more then you could possibly know. Hope everyone has a great Christmas and a Happy New Year
Josie
Tuesday, December 2, 2003 0:49 AM CST
It is will deep saddness that I tell of the passing of little Austin. Austin was diagnosed with Neuroblastoma on November 13th 1998. He acheived "No evidence of disease after many treatments for a whole 15 months before his disease returned at the age of 5. After many more rounds of chemo he achieved no evidence of disease a second time and spent 5 months away from hospital, before disease returned again. After years of battling this horrible monster he was admitted to hospital for his final stay on Sept 8th. Austin for the past almost 3 months has endured alot and finally on November 27th his little body could not fight no more and he passed into Jesus loving arms at 3:00am. We have all became close to Austin as this big internet family and we will miss him deeply. For those of you who want to send his family words of comfort, their is a link on the bottom of this page to his. Austin will be greatly missed by his mother and father Beth and Glen and siblings Erica, Amber and Aaron .
I also want to thank so many of you who have been a comfort to me in my time of sorrow. I feel that even though most of us only know each other through websites that all of you that have sent me emails and said such comforting things in the guestbook are all part of one big family for me and it means so much. I find that most of my support has come from the internet during my times with Ayden and now the loss of Dominyck. All you wonderful ladies that check in to see how we are, words cannot express how much that really means. Thanks you all so much and hopefully someday I will be able to thank you all individually.
Josie
Wednesday, Novemeber 13, 2003
Happy Birthday to Ayden. He is now two years old!!!! What a great accomplishment. I think forever and ever a birthday in this house is going to mean so much more then presents. It means a celebration of life!!!
Happy Birthday Ayden!!!!!!!!
Sunday, November 2, 2003 6:43 PM CST
For those of you who missed the MIRACLE update on Ayden please check it out in the history. Ayden is still doing well and having no sign of pain or anything. But as my life continues to go we have suffered a tragedy in our family. On October 21 I gave birth to a beautiful baby girl. I was only 4 1/2 months pregnant and she had a major heart defect so could not survive. She was still born at 6:52 am. She weighed 3 1/2 ozs and was 7 inches long. Bill being in Afganastan could not be there with me which made it even more difficult to go through. We named her Dominyck Keona Pynn. Dominyck means belonging to God and Keona means gracious gift of God.
I want to say thank you to the wonderful nurse Sue who helped me pick names that had meaning and for taking such lovely pictures of Dominyck for me.
We will be having a service for Dominyck but are unsure of when, as Bill is coming home on Nov 8th but will only be home for a short time before heading back to Afganastan for another 3 months. I will let everyone know by way of this site or by email, when we will have the service. We are getting a stone for her placed in the same spot as my grandfather and will be burying her ashes there with him.
Many of you have been there for us with all we have been through with Ayden and I am asking for your prayers once again as life right now is very very hard. I have not been sleeping alot and with my new job and promotion I am finding it very hard to grieve. It is like I feel I dont have the time to cry as much as I want to. I have to be so strong and hide my pain in order to be able to function at my new job. When I am not at work I just want to hide away from the kids and cry. I am hoping when Bill comes home it will give me a chance to talk and might ease some of the hurt.
Many of you might not understand how hard this is as I never got a chance to know my precious baby girl , but as a mother those for and a half months were enough and holding her in my arms after she was born and seeing her precious little hands and feet are thoughts that I will never ever forget. Please pray for me as this is soo hard and I really need as much help as I can to move on.
Thank you so much
Josie
Wednesday, October 15, 2003 8:14 AM CDT
I know many of you have been checking in for the latest update. Sorry I didnt update sooner but my computer has not been working right.
So anyways last Wednesday we headed to Ottawa for the results of the MRI. Normally I am very nervous but this time I was good. For almost two full weeks before Aydens pain had been almost cleared up completely. He went back to sleeping normal and actually started eating again. When I got to the hospital the Dr asked me how he was? In the way she asked it sounded like she expected me to say the same. But he wasnt. I told her how good he had been and she was sooo happy. Then she told me that the MRI showed nothing. There was no sign of anything in the leg or the hip. She said she couldnt explain it, because the bone scaned showed something and with all the pain and stuff he was having. I think she was waiting for me to say he was still in pain and she was going to do more tests, but when I told her he had been fine she was sooo happy. All she kept saying was "It makes me soo happy that he is doing better, I am so happy to hear that he is not having the pain, I really cant explain this but I am so happy for him" It was like she was the one getting the good news. I told her that I knew the only explanation and that was that just a couple weeks before while I was at church, everyone prayed for Ayden and prayed that God would take anything that was in his leg and make it disappear. One week later my Grandmother took him to her church and they did the same thing, along with many many other churches and people praying that Ayden be healed of whatever this was. I beleive that is the explanation. Maybe there was something there, maybe it was just a fluke test and Ayden's pain was something else, but maybe just maybe , everyones prayers actually worked and this is living proof of that. I want to thank everyone who prayed everyday for this for Ayden and I am asking that you continue to pray for him that this is the end of his journey at CHEO and that from this point on he grows up to be the happy healthy boy we have all prayed for since he was born. No more sickness, no more weight loss, no more breathing issues and most of all CANCER FREE!!!!!. Thank you everyone for keeping us all in your thoughts and I want to say a very big thank you to those of you who always sign the guestbook. Weather you are a friend or a stranger, those guestbook entries mean so much to me and will to Ayden as he gets older and can see those people who cared. Every entry just makes my day. Thank you all so much.
God Bless you all
Josie
Saturday, September 20, 2003 6:22 PM CDT
Well I guess we have to keep believing that no news is good news. Thurday I went to CHEo to meet with a ortho pedic specialist. My hope going down were that the oncologist had showed him the bone scan and he recognized the spots as something other then neuroblastoma. Well I was wrong, he hadnt even seen the scans yet. He did some checks on Aydens legs to see if legs were the same length, hips were in the rights place along with knees and checked out all the bones. Then he looked at the bone scan and said it doesnt look like anything to him. I said so you mean it does not look like neuroblastoma and he said "I am not a oncologist i dont know what neuroblastoma looks like, I just know it doesnt look like there is anything wrong with his bones. Well thanks alot for that reassurance.
I really did not leave feeling like I got anything acomplished besides that he thinks that an MRI soon is an urgent matter and he called down to put a rush on getting one booked. So far no call on when it might be. I also asked my case manager about the possibility of an MIBG scan as I have been told that this can pick up neuroblastoma is some kids, so why they arent doing this is beyond me.
They are actually kind of mad at me right now as I have reschedueld his two week appt with the oncologist and wont be able to make it down till a month after our last visit. In my opinion it is just a wasted trip for me to go all the way to CHEO for them to ask me questions on how he is. If they are not going to do an actual test then it is a waste of my time and they can talk to me on the phone. Right now I am in the process of opening a new portrait studio which I will be manager of and I am working alot and training staff so takeing time off for silly visits does not fit into my schedule.
I have asked if there is anything else we can do since this ortho pedic specialist doesnt see anything, to find out for sure if this is or is not the neuroblastoma and all they tell me is to wait and do more tests in a few weeks. So for now we are still doing the waiting thing. Please dont forget to sign the guestbook so I know who is visiting the site
Will update again soon
Josie
Wednesday Sept 10th. 2003
Well guess what, we have now become offical memeber of the waiting club. Friday Ayden went for his bone scan and ultrasound. Things went well besides that the technican giving the ultrasound gave me a heart attack by saying to have a seat in the waiting room because he wanted to call the doctor to see if she wanted to see me sooner then next wednesday. After an hour wait they still couldnt reach the doctor so they let me go home with my stress level through the roof. Today we went to meet with the doctor for the results. First thing she said was the ultrasound was good which eased my mind and then said but the bone scan showed something. My heart dropped. So as of right now this is what I know. The bone scaned showed something in the leg and the hip area. Apparently it is not real clear and they dont know if it is the neuroblastoma. She said the only way to know for sure is a biopsy and the biopsy of that area is very complicated and risky and the is no one who would do that type of biopsy unless they no more. They cant give me any other explanation of what this might be. It would be nice if they could say well it looks something like ??? but they only say it could be the neuroblastoma and they dont know what else it could be. Ya this helps. So we are waiting again. They want us back in two weeks and in 3 to 4 weeks want to do an MRI or possibly another bone scan to get a clearer picture. More like wait to see if it gets worse so that it shows up better. But I guess also look on the bright side they didnt come right out and say it was neuroblastoma. She is going to show the scans to a bone specialist and call me if he has any ideas. She was a little concerned as he hasnt really ate or drank anything since Friday but might just be fighting a bug. The main concern is he sleeps alot and the pain he gets. Some days he is completely fine and other days he crys in pain and other days he sleeps almost all day with the exception of 2 hrs around 10 -12 and 2 hrs from 6pm - 8. Being awake only 4 hrs out of a day does not seem normal. But again this is not every day maybe 2 to 4 days a week. Nothing seems to be consistent the pain or the tiredness. So anyways. Your prayers are greatly appreciated and please stop by and sign the guestbook, It is really nice to see who is thinking about us. So for now we have to thank God we dont know for sure and pray that he will heal up whatever is going on inside Aydens little body. We will update again soon
P.S. I have added new pictures in the photo album
Thursday Sept 4th , 2003
Hello all. Sorry I have not updated again lately but I still dont know anything. We have made two trips to Cheo and now we are heading to Ottawa tommorow for a bone scan and an ultrasound of Aydens hips. We are praying that they find something to explain the pain but We pray that in no way it is related to the neuroblastoma, our biggest fear. We saw his ongoligist last wed and she says that for sure if it was the tenosynovitis that it would be gone by now and its not. He does not have pain every day but sometimes he cant even walk and other times he is fine. It drives me crazy not to know what is going on and not to be able to help him. Please keep us in your prayers I will update when I know more.
Thursday, August 21, 2003 11:37 AM CDT
Hello and thanks for stopping in to check on Ayden. Ayden has his routine cat scan on Aug 12th. Yesterday on Aug 20th we went to Cheo for his results and routine blood work. Every thing in the Ct of his chest and abdoman was normal Thank you God!! Since about last Sat Ayden has been walking funny and I though maybe it could be a bladder infection or kidney infecton or UTI so Monday I got my friend Jen to take him to the walk in clinic while I was at work. They didnt do anything just gave her a prescription for an antibiotic they said just in case he had an infection. What idiots. So yesterday I mentioned it to the oncologist at Cheo and she decided to do a bunch of tests. She tested his for any sort of infection and did many test on his legs to be sure he didnt have a pulled groin or any muscles that might be making him walk funny and he tolerated every test she did and had no pain. She decided to send him for xrays to see if she could see any form of injury, to his spine, pelvis hips and knees. She didnt find anything. She asked if he had any upper respiratory infections in the last month and I said no and she said it could be something called tenosynovitis which is inflamaiton around the tendons that can happen after a cold or virus. But because he has not had any virus she cant say that for sure. She is also concerned that it might be the neuroblastoma has gone to the bone and is causing him discomfort or pain in that side so she wants us to come back next wed and if it is not better she is going to do a bone scan to check for neuroblasoma. She has said that if in any way it seems to get worse to call her and to come back right away.
As much as I want to beleive that this is not neuroblastoma she has now put the possibility in my head and little to say I am not too comfortable with that. I am asking you all to pray for Ayden and me as this next week is going to be a very long one. I find it so hard not to worry about him and I really wish I could stop the dreams I had last night from coming into my head. I will have faith that he is fine but I really need those prayers right now to help me have that faith. When it comes to the big "C" word and your child sometimes it is impossible not to be worried. I will update again as soon as I know anything for sure. Also I have not mentioned this to Bill as he is in afganastan and does not need any more stress then he already has. I will write again as soon as I know anything
Please stop by and sign the guestbook
Josie
Sunday, July 6, 2003 9:48 AM CDT
Hello everyone. Things went well in Ottawa. We headed down on Tuesday so we could take in the Canada Day events. The fireworks were the best I have ever seen in my life. Our appt with the ENT was first thing wed morning. She looked through most of Aydens chart and came to the conclusion that she does not agree that he has asthma, for the fact that the puffers he was on did not help with the cough he had in the least, even when they upped the dose. Also he has not had the cough really since he had RSV and was given a large dose of predizone because they thought he was having asthma attacks. Well the predizone worked in a differnt way and eased the cough. What she says is that she in almost 100 ositive that Ayden has damage to his Trach from being intibated so many times throughout the first month and a half of life. She says there is probably alot of scar tissue and it was irritaing his throat daily and when he would get a cold it would get worse so that he had a hard time breathing. Now that his trach is growing it does not irritate him every day but if he was to get another cold we would notice it starting all over again. Apparently there is a machine they can give us come fall if he gets a cold and it will send droplets to his trach and not to his lungs like the puffers did. Also she said that the bigger he gets the less this will cause problems in the future. So for now we are waiting till he gets his first cold around the fall and then she will do a scope of his trach to see how bad the damage is.
Another thing we found out is that his left ear drum is still not working and his right is only partially working. We have an appt in a month to check to see if it is getting any better and probably for tubes in his ears. She wants to correct the problem as soon as possible as this is probably what is affecting his speach. We are still waiting to hear from the health unit on when the speach therapist will start coming to help him out.
For the last two days Ayden has had a fever and will not eat so I think he might have picked up a bug while we were at Cheo so pray that he gets over this soon. Also his weight is still at the 10th percentile so pray that he will get over this bug so he doesnt lose any weight and hopefully can make it up to the 25th percentile by our next visit.
All is well with the other boys and Colton is enjoying his summer holidays. We are hoping to get to Canadas wonderland sometime before Bill goes away. Thanks for stopping in and please dont forget to sign our guestbook so we know you were here.
Also smile quilts has made a quilt for Ayden and you can see it at www.smilequilt.com/ayden.html you can also add a square to his quilt if you wish by following the links on the page. Please check it out as it is very nice of them to make one for ayden and it is sooo cute. Make note that those of you who received my email about the quilt that the link was wrong. It is smilequilt not smilequilts. Enjoy the nice weather and I will update again soon
Josie
Saturday, June 28, 2003 6:58 PM CDT
Once again it has been a while since I updated. Things are going well here. Ayden went a full 4 weeks without diareha but now has it back again. I was really bad again but has started to clear up a little so maybe it will go away again. We have an appt at Cheo on Wed morning with the ENT, I dont know exactly what their intentions are so I will post any new information once I know. I feel like Ayden has put on some weight too, as he seems to have a little chunk on him now so I will get him weighed in on Wed and see what the grand total is. I am hoping he has reached 25 pounds which would make me really happy. He is still on the high calorie formula which I am going to leave him on till he is at least two to help him catch up. The other boys are doing well. Colton started holidays on Thurs and I have finished up working at one of my jobs to give me more time with the kids for the summer and more time with Bill before he goes overseas. His parents are arriving tommorow for a visit till July 10 which will be nice for then as they have never seen Ayden before, just in pictures. Aydens 3 month scan that was suppose to be in June was postponed till August they said it was becasue of the whole delay with sars and they have to fit in kids on treatment. This will be the longest he has went between scans so I guess my anxiety level is a little higher then normal knowing it has been his three months and we have to wait two more but this is a big step for us. Pray that my nerves dont get too bad by the time august rolls around. Well that is about all that is new. Still keep Ayden in your prayers as always and dont forget to sign the guestbook and stop by the other sites listed at the bottom. God Bless
Josie
Sunday, June 8, 2003 4:09 PM CDT
Hello everyone. Things here are good. We did our Relay for Life on Friday and had soooo much fun. We raised $5782.00. I will put some pictures in the photo album. Everyones prayers must be working because since my last post Ayden has not had diareha. This I think is the longest ever he has gone without it. I dont know what made it stop because we havent changed anything but it has to be everyones prayers. I have decided to stay away from any doctors for a bit and just pray that whatever it was for the last year has just disappeared. Maybe the next time we go to Ottawa he will have gained 10 pounds and made up for all the months he didnt gain. He is getting so active lately and I can barely keep up with him sometimes. I have bought him one of the childrens leashes at walmart so that when we are outside he can run around the yard and not go on the road. Bill thought I was mean and that he looked like a dog untill the first time he took him out to play and realised how fast those little legs can go. Now he used it too. Next appt at Cheo is with the Ears Nose and Throat specialist and it is not for 3 weeks so we get a break for a bit. Please pray for Ausin as he is in Philly right now and will be getting his MIBG therapy this week. I will post again soon. Dont forget to check out the new photos
Josie
Tuesday, May 27, 2003 10:15 AM CDT
Well here we are back to square one once again. I am so frustrated I want to scream. We went to Cheo on Friday to meet with the GI and the Respiratory specialist. One thing we did find out is that Ayden does have asthma which he could possibly grow out of. His cough isnt around that much these days and that is probably because he hasnt had any colds or anything, just coughs a little when he runs around but doesnt have a hard time breathing so that is a good sign. The doctor said he will probably start up again in the fall and have to go back on the puffers but hey at least we know the cause now.
Now for the GI who I could have rang her neck. They did not find anything in the biopsy's which should be a good thing but I really wanted some answers. Just because they didnt find anything in this test doesnt mean he is not still having diareha all the time. She said because he had gained a pound she felt better. Well no wonder he gained a pound he is on so much extra fat and calories how could he not. My theory is if he was on a normal diet with all the diareha he has he would be losing weight for sure so that is not normal and it also took 10 months for him to gain 2 pounds which is not normal either. She said she did not want to do any more tests and I said so are you telling me this is normal and all she would say is that she was not doing any more tests. Well after arguing with her i just let it go or i would have cried and I told the nurse I am not happy going home with no answers. Aydens bum is bleeding most times from the diareha and i dont think he should have to live like that. They made me wait four months saying it was allerigies and then when that came back negative we waited another two months for this scope and now nothing. I am going to get a second opinion.
I would really like to get him off the high calorie formula as he is 18 months old and should not have to be on it. But he needs it just to maintain his weight and not lose. Well I guess I am done venting. Keep Ayden in your prayers that we soon find the answer to all of this. Will update again soon
Josie
Tuesday, May 20, 2003 1:58 PM CDT
Hello everyone and I hope you had a good weekend. I am sorry I havent updated in two weeks but I have gotten busy and I was waiting for some results. We still have not heard from Aydens GI about the results of his surgury. We were suppose to have the biopsy's back last Thurs. but we never heard. Ayden still has the diarrhea alot so I am hoping the biopsy shows the answer. If not the next step is the bowel biopsy. Either way I hope we get some answers this has just been going on too long. I am pretty sure Ayden has gained a pound but I beleive it is because when we met with the nutrionist in April she upped his calorie intake again so now we are at the highest calories i think possible so if he hasnt gained we have a problem. It really makes me wonder that if he wasnt on all these extra calories and extra fat he would probably be lossing alot of weight if it takes all this to help him gain a pound in 6 months. Bill and I mesured him the other day and I realized that he isnt gaining in height either, he is still wearing the same clothes he wore at 10 months old, but hey I can look at the bright side, we are getting alot of use out of them since he is our last baby. I will let everyone know when I hear any news on the biopsy's. We have an appointment on Friday with the GI and with respiratory specaillist so maybe the GI is just waiting till then. It doesnt give me much hope that she has any answers for us. Well this past weekend was good, I went to Hamilton to my cousins wedding and on Sunday I got to meet little Austin that I talk about all the time and his mother Beth and his family, Aaron, Ericka and Amber and I also got to meet Ashleys mom, Tricha, this is the little girl that passed away in Nov from Neuroblastom, and her family Danielle, Nathan and Derek. I am hoping I got everones names right. We all went to Gage park in Hamilton and had alot of fun while the kids played. It was really nice to meet them after reading their sites for a year. Anyone can check out both Austins and Ashleys sites through the links at the bottom of the page. Please remember to keep Austin in your prayers and also Trish and her whole family. Well hope to have some news soon so check back later.
Josie
Tuesday, May 6, 2003 12:32 AM CDT
Hello again everyone and thank you for stoping in. Well Bill arrived home yesterday and I am definately glad to have him home. He is off for two weeks now so I wont be alone with the kids for a while now. Ayden had his surgury yesterday where they did the biposy's of his stomach and his esphoagus. He did pretty well but was not very happy after. I guess his throat was pretty sore for being intibated and probably from the biopsy's. His GI said she will have the results for us either this Thursday if not then not till next Thursday. She also has asked us to get some more stool samples to test for some other stuff as the diareaha is not going away. Today I am headed off to Ottawa to spend the night outside the Shearaton Hotel to wait in line for Canadian Idol. I am kinda not looking forward to it as it is raining but I am sure I will look back on it as an experience. I will be home for Thursday so I will tell you all about it. Bryce and Colton are really glad to have Bill home. I know it was only 6 weeks but it really seems like a long time to them. I am still dreading the whole 6 month tour. Well other then that not too much is new. Aydens cough still seems to be doing good so we are praying he has outgrown it or something. (it only took a year) but I will be happy if it doesnt come back. Thanks again for stopping in, make sure to sign the guest book.
Josie
Monday, April 21, 2003 5:40 PM CDT
Hello everyone. Like I said I am going to try to start writing a new update every week or so. We havent been back to CHEO since the 9th so I really dont know a whole lot more then I did the last time. Aydens cough seems to be not so bad lately which I am happy about, but the bouts of diareaha are back that we dont know what is causing it. I am kinda upset because he had just gained a whole pound and now i am sure he has lost it once again. I am still waiting on a few doctors to get back to me on appt dates. So far we have two in may with the GI and the respirtory and we are booked in for the ENT but not untill July. There is quite the list to get in to see doctors lately. Our appt with the audiologist for a check up is not till Nov. Long wait. Bill is still gone away to Alberta and I am home here with the 3 boys. I am not too sure how I am going to handle Afganastan as this few weeks with him being gone has been really hard. It will be nice to have him home in May to help out. I think I need a holiday, by myself. Any way I will update again soon. Hope everyone had a great Easter.
Josie
Friday, April 11, 2003 8:59 PM CDT
Hello everyone and once again thank you for checking in. I know it has been a month since I have updated so there is alot to tell. Last I wrote Ayden was going to CHEO for the upper endoscopy which is the scope of his esphogus or however you spell it. Well the night we arrived at the Ronald McDonald House he came down with a high fever. We headed over to the hospital early the next morning as I knew they would cancel the surgury which they did and sent us to emergency. After four hours of waiting in emerg we got to see a doctor who said he probably had a ear infection but by this time he was having a hard time breathing so they sent him for a chest x-ray or as I call it the torture chamber. (The machine they put him in is just heart breaking) The chest x ray showed nothing so besides the 5 or 6 doses of ventelin that they gave him they said go home. I did not agree so we spent another night at the Ronald McDonald House where we were up again the whole night with a fever of 104 to 105 and tylenol and advil were not working. By 5 in the morning he could barely breathe to the point I had to give him 5 shots of his puffer to help him get a breath. We headed back to CHEO but this time went up to MDU because they know him there. They said he was in respirtory distress and sent us to emerg but we got to see a doctor within 5 min of arriving. They again put him on the ventilin mask all day and then gave him a steroid for his lungs and took a nose auger to check for a bug. When his oxygen was up to 95% they said we could leave and never told us what was wrong. We came home to a phone call the next morning that he had RSV which is like neumonia only viral. I knew it wasnt an ear infection. Well that cleared up in two weeks thank God and we went for his CT scan on Mar 31. Just got his results on Wed the 9th. All is very well the very last line of the results says "No recurrent or metastatic disease" Which is always nice to see. We also met with Aydens pedetrican and nurtritionist to find out we are getting referred to two more doctors about this whole cough and weight loss issue. We will be seeing a respirtory specialist and a ENT (ears nose throat) We still have to reschedule his surgury so who knows when we might have some answers but I am hoping that now with him seeing so many differnt doctors someone will find the problem. The nutritionist also decided to raise his calorie intake once again and he is up to 27 cal/oz formula from the 24 we were giving him so i hope this will help. Well sorry this update was so long but I am going to start updateing the page once a week or so now so keep checking back. Dont forget to sign my guestbook to let me know you were here. Thank you everyone that has donated to my relay for life and for those of you still wanting to help I am accepting donations till the end of May. Send them to 199 Golf Course Rd Pembroke On K8A 7B1 I will update again next week.
Josie
Thursday, March 13, 2003 8:22 PM CST
Hello all and thanks again for stoping in. I have waited a while to post a new update hoping that I would have some news but once again we are back at square one. Ayden finally had his allergy tests done on March 10th. This was the big day we had been waiting for because the doctors thought that the weight loss, and the cough could be caused by an alergy to something he was eating or maybe breathing in. Well it turns out that they were wrong and Ayden does not have a single alergy. I guess this should be a good thing but I was kinda hoping that we would just find out he was allergic to something and be done with it. Also on our visit to Ottawa we got Ayden weighed and once again he has not gained any weight. This is really starting to baffle me as he eats like a horse and is on a very high calorie diet so this time I was really hoping for some sort of gain but I was disappointed once again. The doctors can not figure out why he is having bouts of diareha so often. An allery would have made sense to me but we werent that lucky. Aydens GI called me today and decided our next step in a scope. On Monday we are going to CHEO and they are going to put him under and do some sort of scope on his esophagus and look at his stomach and intestine. They are then going to take some biopsy's of his esophagus. Please pray that they will find something (NOT BAD) but some answers so Ayden can just go on and be a healthy little boy. I guess compared what other children I have met, have been through, Ayden is lucky . I guess I just have to tell myself it could always be worse so Thank God everyday it's not. Sometimes that is hard so maybe pray for MOM too. Hope to have some test results back in 2 weeks or so and will post if I find any news. Until then keep Ayden in your prayers.
Josie
Monday, February 10, 2003 5:12 PM CST
Hello everyone and thank you for stoping by to check out Aydens web site.It really means alot that there are so many of you that are keeping him in your thoughts and prayers. Please go to HISTORY and read the other entries I was waiting to update till I got some results but we have spent alot of time a CHEO lately with no results yet. Last post I mentioned that Ayden was losing weight again and also has had a severe cough for a very long time now. The puffers that the doctor put him on have not seemed to ease the cough too much so his pedetrician decided to send him for a test for cystic fibrosis. After a week of worrying we got a call that he had already had this test done in July when he was addmitted and it was negative. THANK GOD!! She also decided to send us for a consult with gasrtoenterology (GI), also with an occupational therapist (OT). The OT will do a test where they watch the food as he is eating it and see where it goes and how he digests it. We got in to see the GI within a week which was good because they said it could take up to 8 months. She decided to do a bunch of blood work and we had to get some stool samples. She is refering us to an alergist. At least we know they are covering all the bases. They are waiting for all the results and they might do a scope and a bowel biopsy. We havent got in to the alergist or the OT yet. We had an appointment with the uroligist on Jan 27 and he said Aydens only kidney is looking good and we dont have to go see him till next year now. We went for a chest x-ray and the blood work on Jan 31st but we were told it would be at least 2-3 weeks before the results make their rounds back to us. We did the hearing test here in Pembroke and he failed so they refered us to where else but CHEO so much for having one doctor close to home. We had our appointment with the audiologist at CHEO on Feb 5th and they cant get any firm results as his ears are so full of fluid from this cough that his ear drums are not working at all. We also took in some stool samples the same day and are waiting for the results on that too. We are praying that with all the test he has been through lately that they will find a cause for this excesive diareaha and cough. for close to 13 weeks or more. We ask that you continue your prayers for Ayden that the doctors can find out what is going on in that little body of his. I will keep you all posted if we hear any news. Also keep in your prayers the Maestrello family. I met Art and his son Cory at the Ronald McDonald house a year ago and became good friends with Cory while being there with Ayden. Cory passed away on January 21 at the age of 17 from cancer. He had a great impact on many of the children with cancer and parents that knew him.
Up to date now Ayden is seeing 8 doctors. Oncologist,pedetrician,nutritionist,uroligist,audioligist,gastoentoligist, occupational therapist, alergist hopefully someone will find something out.
Please stop by and sign our guestbook to let me know you were here
Josie
Monday, January 13, 2003 at 01:56 PM (CST)
Hello everyone and thank you for checking in on Ayden. For those of you who did not read the other entries, there are three postings that can be read in the history.
Wednesday was our trip to Ottawa for Aydens test results, He had his CT scan on Dec 17th. His doctor said that everything in the CT looked normal . THANK GOD FOR THIS!!
They have to redo the Chest part of the CT because when they did it his chest was full of fluid and they could not get a good look at his lungs so we will be going in March to get the chest part re-done. We ran into his nurtritionist while at Cheo in time for her to check in on his weight and we found that he is not gaining again. Actually he has lost weight since we were there in December for his CT scan. Both his nutritionist and his oncoligist agreed to send him for a consult with a gastrol intestional doctor. We still have Ayden on a high calorie diet so he should be gaining lots of weights and he is loosing so this is confusing for us all. Also since I last wrote Ayden came down with an awful cough that would not go away so our Family doctor has put him on two different types of puffers for Asthma. She said this could be temporary so I pray that it is , because he sure hates taking them. Also his pedetricain at Cheo has decided to send him for a hearing test. She said that some babies can have a hard time hearing certain sounds and tones but not be deaf and this would explain why he does not repeat words or turn every time you speak to him. We will be going on Wed for this test so again we pray that everything is ok. Up to date we now will be seeing 6 differnt doctors. Ayden has a Pedetrician, Nutritionist, Oncoligist, Uroligist, Audioligist, and a gastrol intestional doctor. We have found an audioligist in Pembroke so this is at least one doctor that we will not have to travel to see. Thank God
Well that is really all the latest on Ayden. Again I will ask for everyone's prayers that all theses little things work out. All I can say is that "It could be worse". We pray that the doctors will find out why he wont gain weight and by next time maybe he will have gained ten pounds!!
Feel free to write in Aydens guestbook anytime
Josie
Sunday, December 15, 2002 at 06:32 PM (CST)
Today I will finish Aydens story of the past year so everyone is up to date. Those of you who have not read the first two entries can read them in the history.
One thing I forgot to mention in my last entry was that while Ayden was addmitted to Cheo they discovered he had not been gaining weight. At four months he weighed 14lbs and now at 8 months only weighed 15lbs. The whole time we were in the hospital they did test after test. Each day they would take samples from him to test for something different and each day they would find nothing. After two weeks still they did not know. Without a bowel biopsy they would not know for sure but they said they thought it was an intolerance to milk protein, lactose and soy protein. Which meant he cant have normal formula because it has lactose and cant have lactose free because it has milk protein. They precribed us a special formula and his nutritionist showed us how it mix it very high calorie, to possibly get Ayden to put on some weight. We also had to put vegetable oil in his baby food and cereal to get the extra fat in his diet. We all hoped this would work.
Sept arrived finally for Aydens scan, it was probably the longest 3 months of my life. I went for the results of the scan on October 3rd and brought along my good friend Renee, as I wasnt sure what I was going to hear that day. In the back of my mind I knew things were going to be ok, because God was giving me the peace I had been asking him for since this all began, but I am still human and my worry was not totally gone. That day was the happiest day of my life. When they told me that the spots they had seen were gone. We never did find out what they were. I believe that if they had been blood vessels they would have still been there and if it had been cancer they said it would have grown. So the mystery is "What were they and where did they go?" I believe. "MY MIRACLE" I got a photo copy of the report to frame and I am going to highlight the part that says NO EVIDENCE OF INTRATHORACIC METASTASIS!!!! I dont think there is any way to decribe the feeling I felt that day. Happiness just doesnt cut it.
The same day Ayden met with his pedeatriacian at Cheo to find out he had gained weigh!!!!! Good news twice in one day. Ayden was up to 20lbs 3 oz!!!We had been weighing him over the past few months but this was the largest jump he had ever made. Ayden was finally the happy healthy boy he was suppose to be.
On November 13th 2002, We had a victory party. Not only was this Aydens very 1st birthday it was a day to celebrate his victory over everything he had to go through the past year. A Birthday to me is minimal compared to his VICTORY. To me Ayden reaching 1 seemed to take forever, instead of being 1 it felt like he should be 5. I never knew one year could be soooo long. We invited everyone who cared and Pastor Eric Strachn and his wife Sheena came by to pray for Ayden. We thanked God for helping our whole family this past year and prayed for God to watch over Ayden for the years to come.
I believe that everything happens for a reason. I believe that Ayden had cancer to show me that life is too short. My whole veiw on life is sooooo different now. I look at each day as a new day and know that no matter what, God will help me through whatever life has to offer. I believe that God does not give trials without giving you the strengh to deal with them. I hope that Ayden having cancer not only had an affect on my life but that it will affect many others.
Many times in my life I have heard people say live life to the fullest but as much as I thought I agreed, I never did to the extent that I do now. Life is so precious. Over the past year, meeting parents of children who arent as lucky as Ayden and meeting children who are dealing with terminal cancer, has changed me. There is no way to describe how I feel when I meet these families, or hear that yet another child with Neuroblastoma has passed away. Forever for the rest of my life I will pray for these children as I feel so close to them. It is because of God that Ayden was diagnosed when he was. God felt I needed something to make a difference in my life.
I believe that even the children who pass or go through more than Ayden did with this disease that there is a reason. Someones life will be changed by every childs story. I hope Aydens story will have affect on your life in some way. Trust God every day, if you just ask he will make things clear to you.
God Bless
Josie
Tuesday, December 10, 2002 at 11:10 AM (CST)
I just thought I would continue Aydens story of the past year. Those of you who did not read the first one , you can find it in the history.
After Aydens surgury last Dec we stayed in the hospital , and got to return home on Christmas eve just in time to celebrate Aydens first Christmas with his two big brothers. They were definately glad to have us home. Ayden went back in Jan for a CT and MRI and a MIBG and a bone scan. All his test turned out good. Again we thanked God for his good report.
I began having second thoughts on having Ayden in this study because I had read so much on Neuroblastoma that my head was ready to explode and I knew how fast spreading it was . Knowing that Ayden still had cancer in his lymph nodes and just sitting back and waiting was taking a toll on me. All I could think was what if it spreads too far in 3 months. 3 months between scans seemed like too long to wait. Maybe I should take him out of the study and let him have chemo just to be sure. Many things were going through my head. Did I make the right decision, am I doing what is best for Ayden or just helping doctors. Which is better Chemo or waiting??
I kept Ayden in the study but every time scan time came my fears were back and I almost lost my mind. In June Ayden had his third scan. The day after he was addmitted to our local hospital with a very high fever. I was sooo afraid. They did a chest x ray and found that his lung had been punctured. They said it was probably from the cat scan that when they were breathing for him they expanded his lungs to large and poped a hole. The waited and the next day it was still there and so they told me they were air lifting him to the Childrens hospital because they thought his lung might colapse. We ended up going in ambulance because they were afraid of the altitude. Ayden was admitted and stayed another few weeks as he came down with an awful bug and it took its toll on him. His lung healed on its own Thank God!!
When it came time for the results of the scan the doctor told me they had seen a few spots on his lungs and were not sure what they were. They said it could be blood vessels or it could be the cancer. At this point I was scared again. They said it was only a chance it was cancer so they were not going to do any more tests and that we had to wait till his scan in Sept to see more. Another 3 months!!! I asked for more test but was told his study called for a scan every 3 months and they did not do tests for peace of mind. Once again the thought of taking him out of the study was there. I felt lost. Were the doctors looking at Aydens best interst or just wanted results for their study. I was very angry.
Pray was the first thing I did and asked God to show me what to do because I felt like I couldnt make decisions on my own any more. I again left him in the study, to find out that these spots on his lungs had been seen in his scan in April and I was not even told about it. There is no way to decribe the anger and confusion I was feeling. The doctors didnt seem to want to answer my questions and it was so hard to just let go and let God.
I will continue another day.
God bless all
Josie
Tuesday, December 03, 2002 at 09:25 PM (CST)
This is my first entry for Ayden so I will give some history . Ayden was born on November 13, 2001. A healthy 9lbs 10oz. He went for a routine check up when he was a week old and the doctor asked if we had any concerns. My husband mentioned that Ayden had thrown up once and it seemed to be alot. Our doctor told him that it is normal for an infant to spit up and to bring Ayden back in a week to make sure he was gaining weight.
At two weeks we went back and Ayden was growing fine, he had put on alot of weight already. My husband mentioned once again that he had thrown up once during that week. So I think it was to ease his mind she sent us for an ultra sound. She said there was a chance he could have Pyloric Stenosis where the opening of the stomach closes and makes babies vomet and not gain weight. Well since Ayden was gainging weight I was not too concerned. When he was four weeks old we went for the ultrasound and just a few short hrs later we got a call that we had to go to the childrens hospital the next morning as they had found a large mass in his abdomen.
The next day we met with a uroligist that looked at the ultrasound and said that he thougth it was Wilms Tumor. He ordered a CT for the next day. One hour after returning back home we got another call that we had to go back to Ottawa as the tumor was not attached to his kidney but to his adreanl gland and wrapped around his entire kidney. They said it was neuroblastoma. He told me that neuroblastoma was very fast spreading and we had to go back for an MRI and a bone marrow biopsy. The MRI showed no spread and the biopsy came back negative and Ayden had surgery the next day.
They found spread to his lymph nodes only, and after 5 hours of surgury were able to remove the whole tumor but had to take his adrenal gland and kidney with it. This was the scarest day of my life and I will never forget that day and the day of all the phone calls but through it all it had made me realize how precious life is. God was watching over my little Ayden and now I feel some conection to everyone who is dealing with neuroblastoma no matter what the stage.
I pray for every child whose story I read as not all are as lucky as us. Neuroblastoma is an awful disease but I believe prayer helps.
Josie
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