Aly's fight with ALL ( Leukemia)

On June 28th 2011 Aly was diagnosed with Acute Lymphoblastic Leukemia, otherwised referred to as ALL. ALL is a cancer of the white blood cells which is characterized by excess lymphoblasts. Aly is currently being treated by the amazing team of doctors and nurses at Kingston General Hospital. The treatment and support that she has received from the team at the Cancer clinic, and the care during our week long stay on the pediatric floor has been amazing.

Thursday 14 July 2011

Why I hate Dexamethasone

.....I hate it because it is 3:21am and most of you are fast asleep, but I am awake and making Aly chicken and rice. I hate this steroid because it has taken my little Aly away for 5 weeks. The little girl who loved her night time routine of having a bath, brushing her teeth and reading a story, now stands at the sink screaming while I wash her down witha cloth because she refuses to take a bath. She screams as I try to brush her teeth because the chemo has caused mouth sores to develop .... she no longer wants a story everynight, instead opting to sit alone in her room watching a movie ( yes - she now has a TV and DVD player in her room). The little girl who used to love playing outside and going for walks, barely even wants to get out of bed. She watches movies all day long and periodically helps me make a fried egg sandwich or two. I do my best to get her up and about, and we normally venture over to Granny and Popa's for a visit just so she can get outside and get some freshair. I hate it because the cute little girl who used to make me laugh and run around the house is an emotional roller coaster and grumpy and moody for most of the day.

Dexamethasone - - I know you are protecting our Aly from some of the side effects that she may experience from chemo, but I hate you right now. In 2 more weeks I will be happy to see you go so I can have my loving little girl back.

8 comments:

Lou and Vee14 July 2011 at 07:52
Hello Audrey and Aly, having a blog is an excellent way to share your thoughts and feelings as well as updating all of us who are thinking of you and wishing you well. My nephew is just finishing his treatment for ALL and moving into maintenance. It has been a long year but he persevered as will Aly. Kids are so strong. My thought and prayers for continued strength are with you !
ReplyDelete
Replies
Anonymous15 July 2011 at 08:18
Haydyn misses you Aly, let us know if your up for another visit... How cute was she when she said "Haydyn, do you want a sandwich too? My mom will make it!" Great job on the blog Audrey!
The Van Heuvelens
ReplyDelete
Replies
angie16 July 2011 at 01:49
Hi Audrey,
My name is Angie, your brother told me about Aly's diagnosis and I just read the his fb posting about your blog. Your blog just brought back a flood of memories for me, in fact this is probably the stage of Matt's treatment that I remember the most and it is most memorable because of the steroids. If I remember correctly this was probably the longest stretch of steroid use during the protocol. You are right, it is the worst, I hated it too. I always felt that the steroids were worse than any of the chemo! Matt had similar symptoms to Aly's the difference being that he craved dill pickles and spaghetti at all hours. It is very difficult to watch your child experience the side effects of steroid therapy but this too will pass. The side effects do not appear to linger so when they're done they're done! Matthew managed treatment very well. I was amazed and inspired by him everyday. Matt was diagnosed at 4 years of age, he is now almost 11. He has been out of treatment for 4 years and proudly calls himself a surviour! Hang in and Hang on! Go Aly! Feel free to contact me if you would like.
Angie Tidman
ReplyDelete
Replies
Anonymous17 July 2011 at 11:27
Hi,

The Moore family sends their positive energy and best wishes along with our thoughts and prayers to all of you. Kids are fighters particularly when they come from great parents! Stay strong Wee Aly you have lots of folks pulling for you and your speedy recovery.

Lots of Love
Eamonn (lets play soon!), Oliver (let me play with your toys soon!) Carolyn and Richard.
xxxx
ReplyDelete
Replies
Anonymous18 July 2011 at 10:37
Hi Audrey, Brian, Aly and Granny & Grampa Jones,
As hard as it is you need to love everything that can possibly help that wee girl. As difficult as it is for everyone around her, its her wee body that is trying to cope with all the drugs and changes around her. And hey, fried eggs on rolls are a Scottish staple and taste pretty good at 2:00 in the morning, just ask big Al! We will check your blog daily for updates Audrey and it might help you to share your thoughts with all of us who love you. Hope to see you all soon. In the meantime "keep the faith kid". love you, Cathy and Alex
ReplyDelete
Replies
Angela Hollywood22 July 2011 at 10:08
Hi Audrey,
My name is Angela and I am a close friend of Denise's. Jackson and I have been including Aly in our nightly prayers. Jackson said that he wants to give Aly all of his Star Wars movies to watch because Denise told him how much she loves Star Wars!! He said they might make her "feel better". If there is anything we can do to help you out, please don't hesitate.
ReplyDelete
Replies
Anonymous25 July 2011 at 19:03
Hi Audrey, just want you to know you and Aly are still in our thoughts. Another week to go I guess, we are keeping our fingers and toes crossed. Will be watching the blog for updates. Give the wee one a hug. Love Cathy and Alex xxx
ReplyDelete
Replies
Anonymous9 August 2011 at 11:02
Hi Aly, was speaking to your Granny last night. She was so happy you were feeling better yesterday. We'll be coming to Kingston soon and we will come to see you and bring you something nice. Be good. Lots of Love, Cathy and Alex xxx
ReplyDelete
Replies

Add comment

Subscribe to: Post Comments (Atom)

Treatment Plan Update

12-27-11: Interim Maintenance II begins

Treatment begins with a spinal, then treatment every 10 days for 8 weeks ( another spinal on week 7)

10-31-11: Chemo today - - vincristine, doxorubicin

10-28-11: Delayed intensification begins - - today Aly had another spinal tap in addition to 2 other types of chemo.
Interim AAly also had her flu shot.

10-03-11: Aly has been visitng the Cancer clinic every 10 days to have her bloodwork done and receive her chemo treatment. Tomorrow she will undergo another lumbar puncture- - she will be at the Cancer clinic first thing in the morning and will get her bloodwork done and then get sedated for her spinal tap. So far Aly has not had any negative side effects from her treatments, and her bloodwork has continued to be strong.

8-19-11: Aly had her final LP today for this round of treatment. All of her blood levels are great so we don't need to return to the cancer clinic for 10 days!! Aly continues to received an oral chemo nightly and will continue that for another 2 weeks.

8-10-11: Aly continues to receive her antibiotic for the blood infection and now takes a chemo pill nightly ( I dilute it in water and give it to her with an oral syringe). This will continue for 28 days. She has another spinal on Friday, then her final one for this round the following Friday. Then on to the next protocol.

8-2-11: Ultra-sound completed today on Aly's left arm. They uncovered a blood clot, so blood thinners begin tomorrow ( that means 2 needles/day). They also want to complete an MRI on her left arm ( similar to what was done with her right arm) - that will happen tomorrow at noon. Aly is in remission now, so next phase of treatment will likely begin tomorrow.

7-31-11: Both procedures were completed on Friday ( 29th) and all went well. MRI was also completed on her right arm and she received Chemo to her spinal fluids. The MRI did show an infection in the tissues that surround her muscle from her elbow to her shoulder. Results from her test will be available on Wednesday of next week. Currently the only treatment she is receiving is antibiotics for her infection.

7-28-11: Bone Marrow / Spinal Tap delayed one day due to blood infection. Unable to determine cause of infection / arm pain. This morning there was lots of swelling around her port and they were unable to draw blood - so there may be a chance they have to remove her port fully an replace it. It could be the cause of the infection.

7-21-11: Aly's chemo treatment went well today. The nurse later phoned me with her blood levels and said that everything looked ok - -her hemoglobin was down a bit, but not the point where they worry about transfusion - -let's hope it stays good for next week. They also mentioned that her white blood cells were decent as well, but that the steriods are likely inflating those numbers and once the steriod are gone we will have to monitor that closely. Low white blood count will cause her be become neutropenic ( ...basically have no immune system)

7-19-11 : Bloodwork went well today, no need for a tranfusion today - yay! Her diaper rash is quite bad, so we have to pull out the zinc for her. It's sad because she has never had a diaper rash as a baby. Next week is bone marrow test and spinal tap to she how she did......fingers crosssed and positive thoughts!!

7-14-11 : Chemo went well and blood levels were so good we might not have to go back until next Thursday - Yay!

Today we have to go to the cancer clinic for a short round of chemo. We should be in and out within an hour.