So, its been a while since I've had a chance to sit down and update.
We spent a good part of last week trying to wrap our head around the plan for Lexi's treatment. Her remaining treatment is divided into 8 parts:
Consolidation Part 1: 4 weeks
Consolidation Part 2: 4 weeks
Interim Maintenance I: 9 weeks
Delayed Intensification Part 1: 4 weeks
Delayed Intensification Part 2: 4 weeks
Interim Maintenance II: 8 weeks
Maintenance: Remainder of 2 years from the start of Interim Maintenance I
Lexi started Consolidation Part 1 last Monday, 3/16. Once we hit the end of this phase, we will have to wait until her blood count numbers are high enough to move to the next phase. So while we know "what "is to come, we don't really have the "when" pinned down. This means we may have a big scramble for help at the beginning of any new phase. Like when we start consolidation part 2, Lexi will have 5 days in clinic(or hospital if it falls on the weekend) for 6+ hours a day. Should be loads of fun, and I'd really rather not bring Annie along.
Another fun one will be Interim Maintenance I. We are guessing that to start around early June. For 9 weeks, we cycle through 4 days in the hospital, 10 days out, repeat. Just how everyone wants to spend their summer! So long as Lexi is doing well, we should be able to go away for a vacation during one of the 10 days out. I think of all years, this will be the year we really need a vacation.
Beyond figuring out the plan, Lexi has been doing well. Last week, Shawn went to clinic with Lexi, while I took Annie to the pediatrician. We thought he was taking her for an LP. Turned out to be a really long day. She was also getting a med that she needs hydration before and after. He got there at 8:30 and left just before 5. Can't say I'm upset that I missed that one! This past week, I took her for her LP, and she was very unhappy by the end of the visit. But this was only because they were so quick, and she never got time to play with playdoh! So we stopped on the way home and bought some. This coming week she gets a drug that has a potential to have allergic reactions, so they watch you for a while afterwards. So there should be plenty of time to play.
We just finished of second (hopefully last?) round of doing IV chemo at home. This past Monday and the Monday before Lexi got to come home with tubie (her port still accessed) and Mommy got to give meds once a day. The first time I had a home health nurse help. Other then Lexi fighting, it wasn't too bad. So far as giving the meds went, things got better each time. Today she even helped me push the plunger on the syringe. The nurse also came Thursday last week to show me how to remove the needle, and I had them come back this week as well. I'm fine giving meds, but I'm not trying to remove a needle from the squirmy 3 year old. With any luck, I won't have to do either again.
Each day we see more and more of our Lexi returning. She has made great leaps and bounds of improvment in attitude and mobility! I previously posted the video of her walking with her shopping cart. Now she can walk short distances by herself! She has reached the point where there are things she wants to do, and nothing is going to stop her!
We finally moved her up from a toddler bed to a twin bed over the weekend. I was tired of seeing her almost falling out of the toddler bed. We knew we would eventually need to put bunk beds in the girls room, when we need two twin beds, so we just bought the bunks now. Figured we could use the top for storage. The day after we set it up, Little Miss Monkey returned.
First, while Shawn and I were putting away laundry, Lexi was suppose to be down stairs watching TV. Next thing we know she's upstairs with us. Then she disappears and reappears with my tea bottle that had been in the kitchen! She went back down and up the stairs again all on her own. Once we had enough of her "helping" us with the clothes and Annie had finally woken up from her nap, we told Lexi to go play with Annie. Suddenly, Lexi is IN the crib with Annie. She climbed up on her bed, and then right over the rail into the crib. It was then we realized, given the current set up, its only a matter of time before she ends up on the top bunk. Oops. That was all on Sunday, and she has only improved more since then. She impressed both her physical and occupational therapist this week with how far she has come so quickly!
This week Lexi also got to decorate a shirt for our neighbor who is running a race for pediatric cancer. She had so much fun painting the shirt! And it wasn't too messy either!
This weekend is my Dad's birthday. For his birthday, he wants to come watch the girls with my Mom while Shawn and I go out. What ever will we do with a few hours to ourselves?
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