Aly's fight with ALL ( Leukemia): February 2012

Wednesday 22 February 2012

Welcome to Maintenance

Well today is the big day - - we begin the final (yet long) stage of Aly's treatement - - Maintenance". We went to the clinic yesterday for blood work so it would speed up our visit a bit today. Aly is participating in a study that is helping researchers determine the best way to treat this phase of treatment, long term. At this time, the concern is on decreasing the long term side effects of the drugs that she receives. The study looks at the impact of decreasing doses or frequency of chemo. Today will learn what "arm" of the study Aly will fall into. It is all selected randomly, so that process is probably happening as we speak. The day will begin for Aly with a spinal tap followed by chemotherapy. I am not 100% sure yet, however I am pretty sure that I will have to give her oral chemo daily in addition to another chemo ( orally) once a month. It already makes me anxious thinking about how I am going to do that. It is almost impossible to give Aly any medication unless it is camouflaged in honey - - and I can't do that with chemo. I often think that one thing I would never have to worry about with Aly, is her getting into the medicine cabinet. She wouldn't even think about opening up a jar and taking any medication - - she tries to avoid it at all times :) We will also have to deal with my good friend "dexamethasone" - the steroid that I despise. I think she will just have to take it for 7 days each month

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.