Aly's fight with ALL ( Leukemia): ..... Please let me trade places.

Monday 18 July 2011

..... Please let me trade places.

So today was probably one of the most challenging days yet. I can see Aly becoming more and more uncomfortable and happy every day. It's like she doesn't really know what she wants or where she wants to be. On Sunday she wanted to go to Grannies - - so we headed over to Grannies and after an hour or so, she just wanted to go home ..... so home we went. We got settled in her room and started to watch a movie and she started saying " Granny's" "Granny'".....so off we went to Granny's for dinner. It was so hot out that night and she said she wanted to sleep in her room at Granny's so I figured we were there for night. Well that soon changed just after dinner where she said she just wanted to go to her house and sleep in her own bed.....yup, you guessed it - we went home.
Today I just couldn't make her happy. The chemo has made her potty training a done deal and she is back into wearing diapers and as a result has developed the most painful looking diaper rash I have ever seen ( sorry for the details) - so she can barely walk, doesn't want to be picked up and doesn't want anyone to touch her. I figured of all days, we needed to have a bath. She wanted nothing to do with the bath but it was necessary - - so she kicked and screamed the whole time but we got her all cleaned up and freshened up for the day. ( I should add that I had to bribe her with a Happy Meal and the star wars toy that comes with it - she got a C-3P0 figure that dispenses stickers)

I just want to trade places with her until all of this phase is over.
A 2 year old should be out playing with their friends and not sitting in their room watching movies all day.
A 2 year old shouldn't have the emotions of a 15 year old; she should only cry when she doesn't get her way.
A 2 year old should not be depressed she should be outside chasing butterflies.
A 2 year old should not have to go through the pain and discomfort that she is experiencing right now.
A 2 year old should not be worried about her next trip to the Doctor, she should only be concerned about what colour play-doh she wants to use - or what her favourite colour is.
A 2 year old should not have to be exposed to such harsh drugs and chemicals.

I wish that the movie Freaky Friday was real and that I could trade places with my daughter......even if just for one day to give her some relief. I recently read a quote that another mom whose daughter has leukemia wrote and I really related to it .... she said ..... "Tears are not a sign of weakness but a sign of being so strong for so long" I can drink to that one.

We go back to the cancer clinic tomorrow for bloodwork and more chemo on Thurday! I have a feeling that her blood levels will be low and she might be in need of another transfusion. I was not a blood donor before, but I will be donating blood next week and I would enourage everyone who reads this to consider it. It could save someones life.

5 comments:

Vanessa18 July 2011 at 22:04
A-Jo - I'm so proud of your strength and courage. I'm sure I'm not the only one who wishes we could "tap in" for you for some of this but you know as well as we do that Aly needs her momma. Keep leaning on us so that she can lean on you... and let me know if there's anything I can do.
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Anonymous19 July 2011 at 11:43
Sending positive thoughts and energy to you, Brian and Aly! You are all so strong and I cannot even begin to imagine what you're going through. Keep fighting, Aly! You can beat this!
All my love and prayers :)
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Anita19 July 2011 at 15:54
Audrey, I can't imagine what you are all going through, nor would I want to. Your strength shines through. And Aly has it. What an amazing little girl. Our thoughts and prayers are with you all right now. POSITIVE THOUGHTS ONLY.
love The Mccolm Clan.xxx
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The de Haan Family19 July 2011 at 16:01
I can't imagine the little ones who didn't get lucky enough to have Aly's parents. Big, powerful, positive thoughts are shining around you all.
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The Leonard Family20 July 2011 at 09:21
Everywhere I turn I hear you laugh, I see you smile, I watch you racing around after your little ball, singing a song, and I remember the special moments when you used to cup your hands and in a quiet voice say ``Denise I have something special for you.`` I miss your sense of imagination and wonder. There`s not a day that goes by that your not in my thoughts, or that one of your little friends doesn`t ask about you. We miss you a whole bunch. I know the strength that you have within you, and am confident that you will pull through everything that you are going through. There are so many people behind you. I`ve enjoyed our visits and the times that we do get to spend together. Take one day at a time, keep happy thoughts, and I look forward to the day that you have your hands cupped with my next surprise. Stay Strong!

Love Denise, Tim, Emma, and Jack xoxo
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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.