Maddie’s Mission

7/23- Day **1/113** (Maintenance Therapy (Cycle 4 of 7))
Today Maddie was supposed to receive an LP and IT Chemo, however; they weren’t able to do her LP today due to her cough/upper respiratory infection and her saying she’s having a hard time breathing. Her cough is starting to sound “barky” again like it did when she had croup a few weeks ago. Maddie also said her throat hurts when she coughs. They were worried about her airway if they sedated her so we made the decision to hold off on the LP. The nurse did say it looks as though Maddie has a virus because she could see her lymph nodes aka they were swollen. So today they just ran labs and she received IV Vincristine. Her ANC was 1700. They weren’t overly concerned about that number even though it’s above what they aim for (500-1500). I was told she has to be at that number for 2 months before they decide to adjust her meds or put her on another hold. She is to be on steroids (dexamethasone) for the next 7 days and she will go back next week for a regular clinic visit. The LP scheduled for today has been moved to the end of August.

6/25 - Day **85/113** (Maintenance Therapy (Cycle 3 of 7))
Today Maddie received a port flush and exam. Her ANC levels are at a 350 which is too low (the lower a person's ANC is, the higher the risk of getting an infection and for a cancer patient, an infection can be life-threatening).
The range her levels need to be between are 500-1500. We are holding her chemo. This is Maddie's first hold. She has to go back in a week for a fingerpick and they will check her levels again. On that day they will determine if chemo will start again and if so, how much. Should her levels keep fluctuating we will continue to take her back weekly for labs until she’s within range.

6/21/24 - A year ago Maddie was celebrating her birthday at UPMC Children's Hospital of Pittsburgh receiving chemo treatment during a routine 3-day inpatient visit. This year she was able to celebrate her birthday with family and friends. It is because of these treatments that she is able to celebrate at home this year. Keep kicking cancers ass baby girl!!

6/21/24 - 🎉🎈Screaming Happy 5th Birthday to the girl who colors our world with hues of happiness, may your day be as delightful as you are. Your strength inspires me every day. I’m so proud of you and I’m so proud to be your mother. Love you endlessly🎈🎉

This evening Maddie had her first dance class. I think I was more excited than Maddie was. My dancer heart was so happy! And she did so well for her first class! The class was ballet, tap and gymnastics - which they modified for Maddie so she could still participate. This was one of the cutest things I’ve ever witnessed 🩰

This morning Madison graduated from Preschool❤️This was the most adorable mini commencement ceremony and the kids were so cute in their cap and gowns. Definitely shed a tear or two. Congratulations to all the preschoolers moving on to Kindergarten in the fall!

4/30 - Day **29/113** (Maintenance Therapy (Cycle 3 of 7))
Today Maddie received an LP and IT chemo. All her labs looked good. Her ANC was still a little high so they upped her Methotrexate to 9 pills (22.5mg). I spoke with the PA regarding her hair loss. I was very concerned because she basically lost the majority of her hair in 2-3 days. There was such a significant change from when I dropped her off at daycare on 4/23 Tuesday morning to when I picked her up from daycare on 4/26 Friday evening. I wasn’t sure if this was the medication or stress or the combination of both (and yes, little ones can experience stress/anxiety also). She said that it’s not common to see kids lose their hair again during this phase of the treatment but it does happen to some patients. But with the added stress, that just sped up the process. It’s been really difficult going through this process all over again and ironically, it was around this same time last year that she started losing her hair the first time. But I know it’s only temporary, it’s part of the process and her hair will come back in just like before.
At the end of May she will go back for a port flush and exam.

“Behind every bald head is a powerful story, one worth changing someone else’s life”

Round 2 chemo hair loss 🧡🎗️

Life of a cancer patient 😔

4/26- Day **25/113** (Maintenance Therapy (Cycle 3 of 7))
This evening as I was brushing Maddie’s hair, I noticed that it looked rather thin. I thought maybe this was due to her being outside this afternoon and she was sweating, so bad to the point it looked like she jumped in a pool. So I continued to brush her hair, I look at her brush and all I see is hair. I brush a little more and more comes out. I’m so confused because her medication hasn’t changed. Why is her hair falling out again?! Is it her medication? Is she stressed? Her hair was starting to grow back in so beautifully and now she’s losing it again. I’m just beside myself😢

4/9 - Day **8/113** (Maintenance Therapy (Cycle 3 of 7))
Today Maddie received a port flush and an exam. All her labs looked good. All meds have remained the same. She finished her Dexamethasone and Famotidine.
I was talking with a fellow cancer mom who informed me of some information regarding the effects of one of the chemotherapy treatments she’s on. Vincristine kills the white brain matter which can cause issues with mood changes, difficulty concentrating, along with other issues. Which when thinking about it makes sense because before her diagnosis she was more outgoing and not as shy. Now it takes her a while to warm up to people, even family members and that’s due to the chemo. This was definitely an “a-ha” moment. But I wonder if this will have a permanent effect on her. She has roughly 1 - 1 1/2 years left of treatment. Guess the only thing we can do is just wait and see.
Later this month she will go back for an LP and IT chemo.

This is what 1 year of hair growth looks like! My fierce leukemia warrior, you never cease to amaze me. Day in and day out you fight this battle all the while keeping a smile on your face. Love you (and your brothers) endlessly🧡🎗️

4/2 - Day **1/113** (Maintenance Therapy (Cycle 3 of 7))
Today Maddie received IV Vincristine and an exam. All her labs looked good. Her ANC is at 2000, all meds have remained the same with the addition of Dexamethasone and Famotidine. She will take those 2 meds for the next 7 days. The allergy medicine she was prescribed last visit doesn’t seem to be helping much. She still has that darn runny/stuffy nose. Last Wednesday she was complaining of a stomach ache so she stayed home from daycare. Was kinda sluggish most of the day then her dad said she kinda perked up and was back to her normal self around bedtime.
During this visit she was a bit combative. Since she now knows where we’re going I try not to tell her because it just sets her off anymore😔she hates the “yellow pokey” and I don’t blame her. But she really wasn’t feeling it this time, I had to hold her arms down and keep her head up and out of the way for the nurse to access her port. Thankfully these nurses are quick with it. Ugh, I could not do their job. She’ll go back in a week for labs, port flush and an exam.

Congratulations to Maddie's big brother Landon and his fellow teammates for defeating Indiana Wednesday night. They advance to the Pens Cup Finals. Game next Tuesday, 3/19 at 8:45pm. Tickets on sale today at 12:00pm. Good Luck💙🏒❤️

Public ticket sales will open TOMORROW, 3/15 at 12:00 noon for the Class 1A Pens Cup Championship Game on Tuesday, March 19, 8:45 PM at the UPMC Lemieux Sports Complex in Cranberry. The Colts Varsity Hockey Team will take on Greensburg Salem.

https://pihlhockey.hometownticketing.com/embed/all .

Tickets are $10 each and anyone over 2 years old is required to have a ticket. Tickets must be purchased online in advance. It is very likely that this game will sell out, so we strongly recommend getting your tickets now! Let’s Go Colts!!!

3/7 - Day **87/113** (Maintenance Therapy (Cycle 2 of 7))
Today Maddie received a port flush and exam. All her labs looked good. Her ANC is at 1000, all meds have remained the same. She was prescribed an allergy medication since she’s had a cough and runny/stuffy nose for well over a month. She also does this thing with her eyes where she blinks really hard a few times in a row so her eyes may be dry and this past Tuesday she was saying her ear was hurting. Her exam showed that her ear is a little red but they’re hoping once she takes the allergy meds for a few weeks that may clear it up. If not, then she’ll need to be seen again before her next scheduled appointment. She goes back in a few weeks for IV Vincristine Chemo and should be placed on steroids again at that time.

Thanks to everyone who showed their support on 2/27/24 for Maddie’s Mission Day! Here are a few photos from that day🧡🎗️

2/6 - Day **57/113** (Maintenance Therapy (Cycle 2 of 7))
Today Maddie received a LP and IT Chemo. All her labs looked good. Her ANC is still a little low, all meds have remained the same. She goes back in a few weeks for a port flush and lab checks.

Maddie’s ANC levels were 1290.

For those wondering what ANC levels mean:
White Blood Cells fight infection. There are many types of white blood cells and each fights infection in a special way.

The most important infection-fighting WBC is the neutrophil. The number doctors look at is called your absolute neutrophil count (ANC). For a healthy person, the normal range for an ANC is between 2,500 and 6,000.

When the ANC drops below 1,000 it is called neutropenia. Your doctor will watch your ANC closely because the risk of infection is much higher when the ANC is below 500.

A low WBC count increases the risk of infection, but a high WBC count can be a sign that your body is fighting an infection.

World Cancer Day. Her fight is my fight!

Maddie received the cutest little cookie surprise from our friends at Icing Smiles, Inc.

Maddie’s big brother Landon 💙❤️

1/9/24 - Day **29/113** (Maintenance Therapy (Cycle 2 of 7))
Today Maddie received a port flush and an exam. All her labs looked good. Her ANC is still a little low so they upped her Methotrexate to counterbalance those numbers. Since shes had a cough and runny/stuffy nose for roughly a week now they swabbed her for Covid, RSV and the flu. She was also particularly uneasy today when the nurse tried accessing her port. She did need held down this time, though shes typically good about sitting on my lap while she gets acessed, or gets the “yellow pokey” as maddie likes to call It. I’m usually pretty calm nowadays when Maddie gets accessed since i now know what to expect. My emotions used to get the best of me when she was first diagnosed bc no parent likes to see their kids in pain. But yesterday was a hard one since she physically needed held down. The nurse was very efficient in that she tried distracting Maddie and she accessed her rather quickly. Once the nurse had Maddie accessed she perked right back up. Even though the kids get numbing cream I still wonder how much of it they actually feel.
She goes back in a few weeks for a LP and IT Chemo along with her exam