Hi. It's Corinna. I am just giving an update on our princess and I will try to do it as often as I get the info.
Tues Nov 18/03
Alicia is currently at McMaster hospital. She is being treated for meningitis. The doctors are giving her antibiotics. The test results have come back and she does have menigitis. They have not yet determined which type of menigitis she has.
She was feeling pretty good by 8:30pm this evening. I spoke to her and she asked if I could bring her sticker book. :)
The blood clot and the tumour are not being dealt with until the infection is gone. Paul menioned that it is a wait and see approach to the blood clot. If the pressure and fluid do not go away. Then they will have to do surgery.
Let's keep our fingers crossed, that is a big and pretty long surgery.
Feel free to email me at anytime.
~Corinna
Wed Nov. 19/03
I went to visit Alicia today for a few hours. She and I did crafts, played checkers and watched movies. She was pretty good during the time I was there. She is still sore from the lumbar puncture. She is taking less morphine now which is a good thing. Alicia is being treated for bacterial menigitis. Remember that this is not contagious. They are giving her antibiotics through IV, they have not figure what the little critter is yet but Alicia seems to be responding to the antibiotics. The infection may also have spread. They are going to give her the antibiotics for 10-14 days. She will be in the hospital during this time. There does not seem to be a plan for the blood clot or radiation until the infection has cleared up. Hopefully we will find out tomorrow what that little critter is.
take care.
Thurs Nov 20/03 I have not heard from the Denoon crowd yet today. I am trying to call the hospital but their room line is busy...go figure. I would like everyone to note that I have added a guest book. It is in the top left hand corner of the website. I think it would be nice to share some thoughts and feelings.
~Corinna
Fri Nov 21/03
Alicia is good some hours and not so good the next. Hopefully her big brother coming up to see her today will cheer her up a little. She has been in some pain as the pressure can be overwhelming not to mention the infection and the lumbar puncture spot is sore. She has been doing some activity and is continuing to do some crafts. She has been walking a bit but mostly just getting up and using the washroom. The infection that Alicia is currently dealing with has most likey spread. The doctors continue to give her antibiotics and hope that they have the right one. At Melanie's request I would say that Alicia is not contagious!So she can have visitors. On a related topic, Alicia's little boyfriend Avery is also sick right now. He is in need of a bone marrow transplant. Melanie and I are looking into getting our bone marrow tested. You can get tested in Hamilton. I am going to post the website so that other who are interested can check it out. http://www.bloodservices.ca
Nov 24/03
Hi everyone,
I just wanted to let everyone know that I went to visit Alicia today. She was not bad when I arrived. She eating some of Mum's ceaser salad in addition to her own!! She thought that it was pretty funny that she had taken Melanie's food. Alicia was sitting up and making some neclaces with the volunteers. Alicia was having some trouble with her port today. They had de-accessed (sp?) it today for her bath. She had some trouble with that. She was also having a headache. She was getting close to codeine time. Alicia has been on a steady dose of codeine for a little while. This is just management. The codeine, like the morphine has caused her some trouble. She hasn't been using the washroom like she should and this causes some discomfort. The codeine will be reduced over the next few days as the doctors would like to see the symptoms that Alicia has. They would like to see if the headaches are still there and the intensity of them. There is some concern about the menigitis and the infection spreading; as well the blood clot is still an issue. This will be monitored over the next couple of days. Alicia still has 7 days of antibiotics left. There was a person (doctor I suppose) from Infectious diseases come to see her and decided that continuing the antibiotic is the best idea. Paul is currently home with JP, Riley and Nanny. He came home sunday night, and is stayin until Tuesday afternoon. He is then going to the hospital so that Melanie can get some sleep. Gosh..I think that's all for now. Take care.
~Corinna
Tues Nov 25/03 (a month before Christmas, but who's counting.)
Hey Everyone,
Today's update comes from Melanie. She had a brief opprotunity to get on the internet and sent me an update. Take care. ~Corinna
THANK YOU to Corinna for this great site Thank you to those of you who have left messages for us. Corinna will be printing them and bringing them up to the hospital for Alicia to read. The pain seems to be more of an issue in the morning than any other time of the day. We are still trying to "wean " her off codeine...but the good news is that she has been successful in going to the bathroom. She isn't moving around much yet still taking her time doing two laps of Ward 3bHer self imposed record 3 laps from last evening still stands as the one time grand total distance! She did manage to "walk to school " today which means that she walked to the school room she didn’t quite make it so we sent the nurse back for a wheelchair. She spent about 45 minutes one on one with the teacher. She did quite a few grade 1 worksheets some colouring and was sent on her way with ...........drum roll HOME WORK lol. She explained how Mrs Perretts word wall works. And told the teacher that she needed one the teacher tried to get "out of it " by saying she would need to find a ladder to do that Alicia said." yeah, but Mrs Perrett does it for us so I'm sure you could fine a way " Alicia has been moved to a single room again she needs to get more rest for the Dr's to determine how much of her headache is related to being sick from having the postoperative infection * menengitis * or if there is more to be investigated with the blood clot and tumor. The Dr's are happy when she isn't in pain. So are we. Right now she is doing Codeine and Tylenol alternately. It gets very hard for her when it is time for the painkiller.... you can tell she definately needs it. She was giggling when I left. She had talked with Jonathan on the phone and they were trying to determine if she was going to be home for Christmas. They miss each other. We miss our lives and all of our friends and family a lot. K getting too hard now
Dec 1/03
Hi everyone,
I went up to see Alicia today and she was doing well during my visit. She had some trouble with her eye and feeling dizzy. Her pain medication has been reduced and she seems to be managing. She did some homework with one of the volunteers. I spoke to Melanie about "the plan" and she mentioned that they will be doing a lumbar puncture tomorrow. Hopefully they will be able to tell us that there is not much pressure. Melanie doesn't seem to think the pressure is that bad. Alicia is also having her eye patched. She has headaches when her 'good' eye is patched. Melanie told me that they will hopefully be starting radiation by the end of the week. Alicia will be doing radiation as an in-patient. This will last until the doctors feel comfortable with how she is coping. I think that's all for now.
~Corinna
Wed Dec 3/03
Hi Everyone,
I spoke to Melanie last night and she mentioned that the lumbar puncture went well. The antibiotics seem to do the trick. Alicia will be starting radiation thursday morning. I believe the radiation will be starting at 8am and Alicia will be picked up at the hospital by taxi at 7am. This is just a quick update.
dec 8/03
Hey everyone,
Alicia is back on the radiation course. Things got off to a bumpy start to say the very least but seem to be on track. It seems that the Denoon clan will be back at home by Wednesday after radiation!! This is very exciting!! I am not sure what else there is to update!!!
bye everyone
Jan 7/03
Hello everyone ! This is Mamma Melanie writing an update for you. I want to start by thanking everyone for all of the support that we have received . To the staff at Ottawa Cres, J.F.Ross and Centennial thank you very much for your cash and gift certificate donations. We have had lots of help with everything from dalk walking to help with shopping for Xmas presents. We are very lucky to have such tremendous friends family and collegues.
Christmas was a little low key for us in terms of travel and visiting. Alicia had made it very clear as to her wishes for once she was out of hospital. Her first "event " was the Rockwood parade of lights.She sat on a kids lawn chair wrapped in a blanket and LOVED every single minute of the parade. Her next big outing was to a Guelph Storm Game. SHe loves to watch " her Sotrm boys " play hockey. She was very suprized and excited when the announcer said her name over the P.A and welcomed her back to STORM COUNTRY !!!. The third trip that she had talked about ( more than once I might add ) was the family outing to cut down the tree. Luckily Marie was able to go with us to carry Alicia. I carried Riley, Marie carried Alicia and Paul and Jonathan carried the freshly cut tree ! Once again she had a blast.
Christmas day was full of laughs and giggles and presents for miles. Thank you to all of you who sent gifts or asked Santa to send gifts for the kids. Hazel ; you are in it deep my friend.
OUr little friend Avery had a wonderful Christmas present. He is in remission now and they are planning for the bone marrow transplant for around March. We were all shocked but thrilled to find out that Avery's Dad Brian is a match and will be the donor. This is actually a very rare situation. Mum's and Dad's are very VERY rarely donor matches so it is awesome news that Avery has a match and even better news that it is a close relative. Please check into becoming a marrow donor if you feel that you could . We are asking all of our supporters to do so for all of the other Avery's out there waiting for a match.
Alicia has physically changed so dramatically that we have actually had close friends talk to her and not even know that they are talking to Alicia face to face. She has increased her body weight by about 40 % . She started at about 38 pounds and at last check she was 54 pounds. It is typical decadron wight gain. "moon face " and " hump back " as well as a swollen belly and even forehead. We hope to see these symptoms decreasing soon as the steriods have already been decreased. She had lost her hair from the top of her ear straight across the back of her head to the other ear. It is very dramatic but at this point is still covered over by her remaining long hair. We are in the process of having a wig made for her..and discussing a hair cut for time without the wig. We do not know at this point if the hair loss will be permanent. We have been told that every situation is different so we will have to wait and see.
Alicia is going to school half days after she gets home from treatment. She loves school and is thrilled to be back with her friends in room 7 . Thank - you to Ms Perrett and Ms MacKenzie for making the classroom such a special ,warm welcoming place for Alicia to be in. We are exteemly lucky to have these exceptional educators working with Alicia.
We have 6 more trips up the mountain for radiation and then four weeks later we will have an MRI to see if there has been any change in the tumor. We should get a good idea as to the protocol after that MRI and the meeting following that scan. I will keep you posted on any and all information about the next treatment options. We will continue to help Alicia get stronger and enjoy every part of each day . Please do the same . Love to all
Melanie
P.S. Riley is celebrating her first birthday tomorrow. !!!
Riley is currently staying with my mom. Aka. Grandma Brenda. She will be staying there for the majority of the time. Grandma Brenda will be getting some relief. She will stay with Nanny for parts of the day also. Kate has been a great help in Riley's apparent social life. Grandma Brenda has passed on a message that she is in need of a baby gate. Riley is really movin'!
JP is staying with Nanny at 17 Lincoln. He is still attending school and Marlins.
