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Started phase 2 today. This 4 week period involves –
3 Spinal taps – one every monday starting today
- 3 Spinal taps – one every monday starting today
- 1 chemo – today
- Oral chemo to be had everyday for 28 days
She is never happy and very anxious when they are going to be accessing her port and hence is not a good morning. She also realizes that they give her anesthesia to put her to sleep which she does not like so another reason for anxiousness. We are hoping as the weeks progress she will get used to it so she is not as unhappy. Outside of that, once procedure is done and we are headed home, all is well. Had a good day playing with a friend and doing artwork and making presents for mommies bday.
Tue – Slept through the night and woke up fresh. First trip to the grocery store after 6 weeks. She had fun “driving” the cart and helping mommy pick stuff.
Spent afternoon playing with Anvi and Roma. Went outside and the girls picked some rocks for coloring. Had an overall good day and went to bed happy. 
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Posing away……………
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He also said that this treatment would not hamper her chances of bearing children(long time away, but good to know), would not have any effect on her IQ so in short would not have any long term serious side effects. The couple things that may get effected if at all, are that she could be an inch or so shorter than had she not undergone treatment or maybe her focus levels may need to be worked on, but again nothing detrimental.
Have been told to make the most of this month since she will be recovering from first month’s heavy medications and be more herself. Should take her out, walking, playing, regular activities so as to bring her back to normal.
With having said that, we went to the Franklin Museum of Science with her after the appt at CHOP since we were right there. Aanya had fun exploring the heart and seeing the show in the Planetarium, but if you ask her what she liked most about the museum, she will prolly say the cafeteria.
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Day 36, Thursday. Went in to see her oncologist and the highlight of this hospital trip for her was the fact that there was no blood work required and hence they would not need to access her port. 
Treatment plan was discussed as attached below.
- It will last for 2-2.5 years and broken down into 5 phases.
- The next 4 phases spanning 7-8 months will be more intensive wherein she will not be able to attend school but thereafter she should be fine for the rest of the treatment. (again presuming all will go as planned and hoped). We are working with the Education Counselor at the hospital who in turn will work with the school and provide us a robot that would enable Aanya to attend her class virtually. Hoping this will work out and she will not loose a year of school. She may attend an odd day here and there if her health permits and school allows it.
- The remaining 18 months will be split into 3 month cycles.
- Details for the next phase will be given at the end of each phase so as not to overwhelm us with everything up front and we think they may alter treatment a bit based on results at the end of each phase.
Next phase, Phase 2, Consolidation to begin on Monday Aug 7. After the hospital meet, we drove off directly to Philly since we had any appt with an oncologist at CHOP for a second opinion. Our oncologist here referred us to this senior oncologist who specializes in ALL and bone marrow transplants. Spent the evening relaxing in the hotel and early to bed since had an 8.15 am appt.
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The most anxiously awaited news which we thought would not arrive until Wednesday came in today. A call from her oncologist sent our hearts spiraling and those few seconds saw emotions with no boundaries till we heard her voice and her first statement – “I am so very happy to tell you i have very good news” Aanya’s bone marrow report came back showing 0% leukemia cells. :-). They were hoping she would reach at least 0.01% which would put her in remission but she exceeded everyone’s expectations. Her oncologist stated that the whole team is extremely happy since they had not expected this. We needed to ask her 3 times to ensure we correctly understood what she was saying and that we were not just hearing something since we so wanted that to be the truth.
We are scheduled to see her oncologist on Thursday to further discuss the report and plan of action for Phase 2. She is also going to guide us and prepare us for our second opinion meeting that we have scheduled for on Friday with an oncologist at CHOP.
We have god to thank, and, all of you, our dear loved ones, for your overwhelming support and prayers for her successful recovery. With your continued support and praying, our angel will ride this wave and come out a strong winner in due course.
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Day 31, Saturday – Slept a whole 6 hrs without waking up. Yaaaaahoooooo!!!! All 3 of us feeling rested. Woke up early, spent some time in the hot tub and then down for breakfast. First day after 5 weeks she actually laughed out loud and acted silly making funny faces. Hailey didi had come to visit so she spent the day with her coloring and playing games. She had a really good day and was sad to see her leave.
Day 32, Sunday – Β Had a another good night of sleep. She beat her constipation problem today. It was a day full of treats. Had a yummy breakfast of pancakes, went out with her friends Anvita, Roma and Racheyta to Das Creamery for ice cream and then headed back home and spent the next couple hrs coloring and watching some tv. Evening was a treat too since she got to eat pizza for dinner.
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The side effects of this steroid should start wearing off over the next few days and we will see our little Angel return to her normal self. She has lost most of her hair and has a rounder face (side effect of the steroid but will come back to normal over the next few weeks).
Last night was miserable with next to no sleep since she was not supposed to eat or drink after midnight due to the test in the morn.
They did bone marrow aspiration and a spinal tap this morning and final detailed reports would come in sometime mid next week. Anxiously await those results. Phase 2 course of action depends on this report and is expected to start sometime late next week.
Her blood work today was good. ANC 1660 normal min is 1500, so awesome progress. Platelet 190 normal min 150, again excellent. First time in a month we are seeing it within normal range. Doc says bone marrow is working fine. Outside of this she has had a fairly decent day. Not much of an ache, still cranky, hungry all the time, but sitting n more involved in her artwork activity. Hoping for a good nights sleep.
 
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