The past two weeks have been fairly uneventful - at least as uneventful as we can get around here. We've been grateful Madi has had the energy to attend school a couple of days each week. She has her moments of not wanting to let me out of her sight, but they are getting to be fewer as time passes. She even rode the bus home from school the other day. Big stuff!
Madi had Lumbar Punctures and Intrathecal Chemo on the 18th and 24th. It's amazing how strong little ones can be. She has been in good spirits after each procedure and walked out on her own both times. Which was very helpful since I had the two littlest ones with us.
Part of our times was spent in the room with Madi. They did such a good job for me: I just make sure I have the TV on and snacks on hand.
The rest of the time was spent in the playroom down the hall. It's really nice that both the doctor's office and the Test and Treatment area realize that we parents have kids other than just the patients we bring in. Madi even felt like spending some time playing in the room before her last procedure.
After each procedure, Madi can take a little while to wake up. But, she looks adorable while sleeping off the anesthesia.
We just completed week 3 of a 4 week plan. Week 4 is an easy week for Madi since all we have to go in for is a CBC this coming Thursday and continue her 6-mercaptopurine pill 'til Nov. 7th.
Tuesday we will be headed over to a physical therapist to see what she might need to do to maintain her muscle and dexterity for the next couple of years. Kevin and I are very hopeful that the therapist will be surprised with the progress she has made on her own. (She is now walking up and down the stairs with little help from us or the stair rail.) Even better, the elementary has a physical therapist that comes in each week that can work with her, if needed.
Starting Nov. 8th she will have 8 weeks of Vincristine and Methotrexate once a week. She will also continue to have blood work done each week - CBC/CMP/lipase. During this 8 week treatment, she will only have to have one LP. (yea!) There will also be more potential for her to be neutropenic, but we will deal with that if/when it happens.
Did you know this will take us all the way up the Jan. 3rd? Crazy!
Everyone has been a great source of encouragement and help to us already- thank you so much. Please keep lifting Madi up in prayer.
Madi had Lumbar Punctures and Intrathecal Chemo on the 18th and 24th. It's amazing how strong little ones can be. She has been in good spirits after each procedure and walked out on her own both times. Which was very helpful since I had the two littlest ones with us.
We just completed week 3 of a 4 week plan. Week 4 is an easy week for Madi since all we have to go in for is a CBC this coming Thursday and continue her 6-mercaptopurine pill 'til Nov. 7th.
Tuesday we will be headed over to a physical therapist to see what she might need to do to maintain her muscle and dexterity for the next couple of years. Kevin and I are very hopeful that the therapist will be surprised with the progress she has made on her own. (She is now walking up and down the stairs with little help from us or the stair rail.) Even better, the elementary has a physical therapist that comes in each week that can work with her, if needed.
Starting Nov. 8th she will have 8 weeks of Vincristine and Methotrexate once a week. She will also continue to have blood work done each week - CBC/CMP/lipase. During this 8 week treatment, she will only have to have one LP. (yea!) There will also be more potential for her to be neutropenic, but we will deal with that if/when it happens.
Did you know this will take us all the way up the Jan. 3rd? Crazy!
Everyone has been a great source of encouragement and help to us already- thank you so much. Please keep lifting Madi up in prayer.
1 comment:
Thank you so much for this update! I just love y'all. That's crazy how much time has passed and how much treatment has been fitted in already. I'm so thrilled she's able to participate in school, even a little bit. I didn't realize how fatigued she'd be from all the medications, to the point of needing PT. I'm so thankful for the team of doctors working with you that have a plan and a goal, and here's to fewer and fewer LPs! I know you've felt every minute of this treatment, and I wish I could speed the next few weeks along and fast forward to a more energetic, smiling, bouncing Madi. But it's coming! We love you guys! So much. Hug everyone from us. We'll keep praying. And you are right, what an adorable sleeping face.
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