Aly's fight with ALL ( Leukemia): Make a Wish .....and it might just come true.

Monday 17 June 2013

Make a Wish .....and it might just come true.

Well we have our good days, we have definitely had our bad days - - but with all of the struggles pushed briefly to the side, all things can get a little bit bright all because a little girl made a wish! Now I will have to confess that her original wish was to meet Justin Beiber, and although I didn't force her to change her mind - I did play her a few you tube videos of Disney World and promised her that it was the most magical place on earth. I won her over when I told her about the Jedi Acadmeny. "You mean I can meet Darth Vadar ....I can fight him?" From that point forward she was SOLD! So she did it - she made a wish through the Queen's University chapter of the Make a Wish Foundation. They came to meet her, they got to know her ... and they have planned the most amazing trip for her. We are leaving this week to go to Disney world. I have to chuckle when I tell people we are going to Disney- and how Aly had her wish granted ... and they say "wow, you are so lucky". Well - - not really. Trust me, although I am super excited to go to Disney I would give it up in a heartbeat if if meant we didn't have to go through all that we have over the past 2 years.

I just realized yesterday that we will be in Florida when we celebrate her "Cancerversary". Not that we will be celebrating her diagnosis - but we can take some time to apprecaite the fact that she has come so far and she is doing so well. I struggle these days as we have a few friends that are still deep in the fight - - I feel guilty that she is doing so well - - its crazy I know, but when others are suffering, the news is not good and decisions need to be made - I think back to the day we received Aly's diagnosis. Her doctor said " it's the good leukemia". And at that moment I couldn't grasp those words. I thought " did she just saw that?" Flash forward 2 years - and I get it. I have often said here that I never want to take her "remission" for granted, but on the anniversary of her diagnosis I will hug her and take the time to appreciate all that she has been through, how resiliant she is, and how proud I am to have such a brave, strong fighter as my daughter.

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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.