Well we finished our last major phase of treatment: Interim Maintenance II (IM II). Wow it is crazy to look back over the last 9 months. Calling it a rollercoaster seems cheesy, but we’ve definitely had some highs and lows. IM II was a little tougher the days following chemo than we anticipated. However, most of the time she would get sick then 5 minutes later she was out playing. She is back into climbing her rope, riding her bike, making crafts and swimming for hours in the bay. She is even back to nagging mom to do handstands with her. The one thing we did learn is the car makes her sick. So we got smart and didn’t take her in the car for 4 days after chemo. It helped and thanks to CoVid we didn’t have too many places to go to anyways.
She did start to lose her hair again. Watching your daughter slowly loose her hair is one of the hardest things I’ve ever had to do. She LOVED her long hair and somehow, she took it way better than I did. However, her steroid weight has finally faded and her hair is basically buzzed with an adorably tan head! She seriously rocks it! One reason her head is so tan is we went to the beach 10 days in a row! We did 4 or 5 days straight around a weekend and the kids said “let’s make it 10! So we did!
We have been looking forward to “Maintenance” for SO long! We have heard it is much easier. I’m sure starting next week it will be… lol The last 2 days were a little deflating but I’m sure this is only our fault to have it so hyped in our heads. We officially started “Maintenance” on the 6th. She vomited 3 times that day.. and then I filled up her pill case for the week. It’s not as bad as it has been in the past but man! She is taking 9 pills a day! Jiminy Christmas. We only have to do the steroids for the first 5 days (yes steroids.. UGH!) but then I think the number of pills drastically decreases. Halelujia! What we’ve realized is even though she is supposed to hopefully feel better, grow, thrive, and start growing some hair, she isn’t done with this yet. Our end date for treatment is January 10th, 2022. The day after Brad turns 40. Shh.. don’t tell him I told you that part.
I was looking over her records and my notes before I started this and I was shock at what all she has endured since Halloween. The below is more for us when we are looking back and reading this in 10 years but you might find it interesting as well.
She has had:
3 painful shots in both legs
3 ER visits
1 Chest X-ray
2 Ultrasounds of her liver
1 Bone Marrow Aspiration
1 ECHO
2 Blood transfusion
2 Platelet transfusions
11 spinal taps and I will say it never gets easier watching your kid be put under anesthesia.
27 times they have accessed her port. She cried for 80% of them.
25 trips to Helen Devos Children’s Hospital
Our girl is such a trooper! I know she will continue to grow and thrive. I’m so sad she has had to endure any of this. But daily she amazes us at how well she is really doing. She is still the happy spunky little 6 year old 99% of the time! Cheers to making it to maintenance! I’m sure my next post will reassure how easy it really is! She will only have to get accessed once a month. We only have to go to Devos once every 3 months for IV Chemo. We finally get to see the cancer center here in TC for checkups in between. Bring it on Maintenance!
Madelyn’s Journey with ALL 