Aly's fight with ALL ( Leukemia): So many numbers to remember .....

Tuesday 4 October 2011

So many numbers to remember .....

So I have realized that throughout this blog I talk about Aly's bloodcounts, what it means to be neutropenic, and the importance of keeping her healthy and away from those that are sick with colds, sniffles and the flu. I was at clinic with her today waiting for the results of her blood work and realized that I have never really taken a step back to see how her levels have fluctuated since she was diagnosed back in June. So, tonight I pulled out all the print outs and put them into EXCEL and decided to graph them ( one of my favourite things to do with numbers and data....). It was interesting to see how low some of the numbers have been and what awesome improvements there have been over the past few months.
Here is an image that shows the fluctuation of Aly's blood levels since diagnosis. I have also listed the definition as well as the normal ranges.
WBC = White blood counts ( 115-135) , NPH = Neutrophils (1.5-8.5), HBG = hemoblobin (115-135) , PLT = Platetes (150-400)
When Aly was diagnosed back in June her WBC was 3.6, her NPH was 0.32, HBG was 71 and her PLT were 39. On her most recent blood work from today here are her current results: WBC=7.4, NPH=2.3, HBG=119 and PLT=413.

Today Aly visited the clinic and had her bloodwork taken, 2 different types of chemo ( Vincristine http://en.wikipedia.org/wiki/Vincristine and Methotrexate http://en.wikipedia.org/wiki/Methotrexate) in addition to a lumbar puncture ( spinal tap) to check the spinal fluids for leukemia and give chemo to the spinal fluids. We arrived at 9am and spent the next 5 hours waiting for bloodwork results and for our chemo to arrive from pharmacy. Just after lunch it was time for Doctor's to perform the sedation and spinal tap procedures. The good news is that Aly rarely has any issues with sedation - we were told today that the last time this procedure was performed her oxygen levels did drop a bit, however that is a normal reaction with that type of sedation. Today there were no issues and apparently the wee bugger snored through the whole procedure. When she woke she ( as usual) asked that they bring her in the dvd player so she could watch the movie WALL-E. I am glad that she loves to watch movies because after this procedure she needs to remain on her back, or side for about an hour in order to ensure the medication reaches the appropriate areas. After that time she then received her Vincristine and Methotrexate via IV over the next 30 minutes or so. Once we were finished for the day, Aly got dressed and walked out of the clinic as though nothing happened. Looking at her you would never know that she had leukemia.

Here she is after her spinal procedure. She is eating a banana, watching WALL-E and getting the remainder of the chemo via IV.

After dinner we went for a nice walk at Lemoine's Point and celebrated how brave she was today at clinic with a chocolate cupcakes ( with sprinkles) and a special sparkler on it - - she was thrilled!

We return to the clinic on October 14th for her final treatment in Interim Maintenance I. We will then be moving into some tougher times - the next phase is called Delayed Intensification - it lasts 8 weeks, and she will be back on the dreaded ( by me) steriods ( dexamethazone) for 7 days on and 7 days off then 7 days on again. It will be tough but if we survived 28 days of it - this should be a breeze!

2 comments:

Anonymous4 October 2011 at 23:32
Audrey, I've never had the words to say how STRONG you are. I feel for what you and Aly go through and i don't think i could have ever been able to do that (and be brave enough) for my little ones. Keep being strong and she is a definite survivor (just look at all the great genes she has). Keep up the wonderful great work Auj!!!! Thinking about you lots
ReplyDelete
Replies
Cathy hannah5 October 2011 at 19:06
You inspire me as a mother and a person. Aly is and always has been an incredible child. What a family you are. You remind me to look on the bright side. I hope that you know what you have done for all of us. You remind us of what counts
ReplyDelete
Replies

Add comment

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.