Last week, Madi had zero appointments. Even better? She was strong enough to attend school every day that week. This is her first full week of school since August!! Out of curiosity, I looked at her attendance record online - she has missed 266 days this year. Not the kindergarden year we had planned, but better than it could have been.
We're learning to take the bad with any good that comes our way on this journey. Unfortunately, Madi has a delay in treatments right now. She went in Saturday morning to get her chemo. All of her treatments are count dependent because of the level of methotrexate she will receive. Platelets have to be 50k and she was at 44k. We'll be heading back in on Wednesday of this week to see if her numbers have gone up. If not, she will receive the vincristine she needs and we will schedule another date to receive the methotrexate. Dr. Rob has assured us that this is 'normal'. Just a little bump in the long road she is on.
Madi has started back on physical therapy sessions. It's amazing how much this helps her fight the side effects the medicines have on her body. While she might not get sick, her balance is a little off, her muscles are weakened and the ligaments in her legs tighten up. All things that can be fixed. (We've become very grateful for modern medicine and heath insurance over the past several months.) She enjoys the challenge PT gives her and she loves her therapist. Win-Win.
Keep praying! If those numbers can get up where they need to be, we can keep treatments going.
Monday, March 11, 2013
Monday, March 4, 2013
just a little longer
Madi started the final leg of her current phase on Wednesday 27th. I'm constantly amazed at how well she handles things and how smoothly everything can go. We arrived at the Pratt Center to get her accessed at about 9:30am and to have a CBC run. (The next several treatments are count dependent. That means her hemoglobin and platelets have to be at a level that is acceptable.) Our next stop was Mercy's Children's Hospital for another LP.
I'll just stop here and say how crazy this past week was! Trying to get everything timed just right so we wouldn't miss appointments and school activities was a bit stressful, but we managed. Since Caroline had an oral presentation at this day, I decided to take Liv and Sawyer with me to Madi's appointment. They had their squirrel-y moments, but for a 4 and almost 3 yr old, they did REALLY well. Between the playroom and snacks during a show, things worked out.
The staff at the hospital was ahead of schedule and Madi went back a little before her scheduled time. It only takes about 15 minutes for them to do what they need to in the procedure room and then bring her back to me. Just about every time she has an LP, she receives intrathecal chemo - chemo in the spinal area. We then had to hang around to receive her other two doses of chemo that were scheduled for that day: Vincrystine and Methotrexate.
Amazingly enough, we were able to get out of the hospital with time to spare! I had warned Caroline that there was a hugh potential I wouldn't make it to school in time to see her. I wish I could share the mental picture of her face when she saw us walk in the door for you all to see. No matter how understanding she would have been of me missing her Famous American report, it was nice that I didn't have to disappoint her. The kids and I got to be there and hear her 15 second spiel about Helen Keller. Madi then stayed the rest of the day at school. Amazing!
The doctors have already warned us to not be surprised if we have some delays the next couple of months. She is scheduled to have treatments every 10 days. Each treatment will be count dependent. Methotrexate dose will increase each time by 50 mg, if her body can handle it. Just as it has been in the past, she will receive blood or platelets as needed. We are obviously praying she handles this as well or better than she's handled everything up to this point. Please keep praying with us!
Kevin has been keeping up with his workouts and running. I believe he is ready for the upcoming 5Ks he will be participating in. A huge 'thank you' to all of you who have donated already. He is still collecting money for the Leukemia & Lymphoma Society. There's still a link at the top of this blog. Any amount is appreciated - don't feel like you have to donate a large amount for it to make a difference. Every little bit helps! Can you just imagine if everyone just donated $1! (There are boxes that can be checked or unchecked to hide or reveal donor name and amount, if you want.) Kevin can also turn in personal checks or cash.
Madi has her next treatment this Saturday. I'll let you know how things are going afterward.
I'll just stop here and say how crazy this past week was! Trying to get everything timed just right so we wouldn't miss appointments and school activities was a bit stressful, but we managed. Since Caroline had an oral presentation at this day, I decided to take Liv and Sawyer with me to Madi's appointment. They had their squirrel-y moments, but for a 4 and almost 3 yr old, they did REALLY well. Between the playroom and snacks during a show, things worked out.
The staff at the hospital was ahead of schedule and Madi went back a little before her scheduled time. It only takes about 15 minutes for them to do what they need to in the procedure room and then bring her back to me. Just about every time she has an LP, she receives intrathecal chemo - chemo in the spinal area. We then had to hang around to receive her other two doses of chemo that were scheduled for that day: Vincrystine and Methotrexate.
She's always hungry after waking up since she has to fast before going under. I try to have a good variety of food for her to choose from, but Cheez-its are her favorite.
The doctors have already warned us to not be surprised if we have some delays the next couple of months. She is scheduled to have treatments every 10 days. Each treatment will be count dependent. Methotrexate dose will increase each time by 50 mg, if her body can handle it. Just as it has been in the past, she will receive blood or platelets as needed. We are obviously praying she handles this as well or better than she's handled everything up to this point. Please keep praying with us!
Kevin has been keeping up with his workouts and running. I believe he is ready for the upcoming 5Ks he will be participating in. A huge 'thank you' to all of you who have donated already. He is still collecting money for the Leukemia & Lymphoma Society. There's still a link at the top of this blog. Any amount is appreciated - don't feel like you have to donate a large amount for it to make a difference. Every little bit helps! Can you just imagine if everyone just donated $1! (There are boxes that can be checked or unchecked to hide or reveal donor name and amount, if you want.) Kevin can also turn in personal checks or cash.
Madi has her next treatment this Saturday. I'll let you know how things are going afterward.
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