Madelyn’s Journey with ALL

The days have slowed down and almost become ‘normal’ in a way. We now do her daily Med’s once in the AM and once in the PM. She has gotten very good at her crushed pills in chocolate pudding and the liquid Med’s at the moment have went away. We typically will see her doctor, Dr. Mitchell early mid-day to get the daily update. Besides the visit with Dr. Mitchell, throughout the days we have nurses (2-3 nurses per shift), the fun committee (Madelyn has finally warmed up to them), social workers, volunteers, teachers, a music person… I can’t lie, the support is A+ for both Madelyn and mom and dad but every now and then having someone stop in your room every 5 minutes is overwhelming.

On Tuesday, Madelyn decided to give Glass TV a try. This is a 20 minute ‘game show’ where the kids call in and get to answer questions and is broadcast to anyone on channel 12. Typical Madelyn, she started with not thinking it would be fun and not wanting to do it. By about question #3, she wanted to call in every question and mom definitely wasn’t fast enough on the dial up phone. The smile on her face each time was priceless. Madelyn was also very quick to get mad at mom and dad when we didn’t know the answer. Who knew it’s not just a caterpillar but it’s actually a ‘whoollybear’ caterpillar. Dad claims his only failed class in college was Entomology and it seems to officially be true 😊

Rhys is who is over the fun committee and he’s truly one of those people who is great at their job and loves what they do. Madelyn didn’t warm up to him too quick, but Tuesday was her day that he finally won her over. Rhys convinced Madelyn to take a walk down to the 9th floor play area (with mom and dad) and learn the game ‘sleeping queens’. We’re not even letting her win anymore but somehow she won both games we played. Its amazing to mom and dad, with all she’s got going on, hooked to an IV, people poking at her non-stop, she still has that smile that lights up a room and it’s still contagious as ever.

One of the other games that we have been playing a decent amount of is Farkle.  For any of you that have played this, you know that rolling 6 of a kind doesn’t happen often.  Well it just so happens Madelyn is the exception to that rule and rolled one here today.  When she saw the excitement of dad after he figured it out, she had the biggest smile ever.

Madelyn during the day goes from her jolly ol self to being very tired.  Typically 2-3 hours in the middle of the day she either takes a nap or gets in her funk where she doesn’t really talk to anyone.  Will just kind of zone mom, dad and the help staff out.  We’re still not sure if its more to do with the Med’s or the her sleep schedule is all out of whack.  Dad likes to push her to take at least a few walks per day.  Typically around attempt #20, dad gets her to say yes and we all walk hand in hand 1 or 2 laps around the floor.  When your isolated in a place like this its ‘the small things’ you realize are what get you through.  Be it the 3 nurses that will comment on her unicorn slippers, or the fact she doesn’t’ have to fight with her brother to scan the badges and push the open door buttons, or maybe its that she knows the lady in the last office before her room has mints.  In our normal world, I know we don’t notice those things nearly as much.  Both Brad and I have admitted though that being here, we have noticed so many ‘small’ things that just truly bring joy to Madelyn which in return melts both of our hearts.   

Madelyn today did have to get 2 chemo shots today.  We found this out yesterday but decided not to break this to her until today and they came in to put the numbing cream on her thighs.  Last year for her flu shot, she cried for probably 2 hours after.  Needless to say I was dreading the simultaneous shots in her thighs not going overly well.  Madelyn proved us wrong and took them like a champ.  5 minutes after and a few tears later (and a bowl of ice-cream from dad), we had more or less moved on and the shots were a things of the past.  I guess were starting to learn this little princess of ours is tougher than we thought 😊

Madelyn had a good night sleep however we were up 3 times to use the restroom.  Mom and Dad told her in the middle of the night if she ever has to go, yell ‘Mom’.  She must of listened as she does this very well and gives me about 3 seconds to get out of bed.  They decreased her IV fluids so hopefully that will help. Fingers crossed! Needless to say, mom is not use to getting out of bed anymore in the middle of the night so it was a long night.  Dad does a good job of picking his head up and making sure all is under-control 🙂 

She had an echocardiogram done to give us a baseline of her heart function so we have something to compare to throughout her treatment. She wasn’t a fan of the ultra sound gel but tolerated it since they promised they weren’t going to poke her. She did great again today with her meds. She still needs strong encouragement to take them but she’s a trooper and improving.  Next step is learning to swallow her pills, but luckily she will start with nerds and sprinkles before we tackle the pills.  

Brad and I have never played so many board games in our life. The support staff here is truly amazing to both Madelyn and us. We always have new games, slime, painting crafts you name it being brought to the room. During the day she has burst of energy and then she’ll look exhausted and ask for tv or the Ipad.  So far only a couple of naps but we can tell shes lost a bit of her usual non-stop energy.  She loves to snuggle (Mom) in her bed.  Dad though buttered Madelyn up tonight and they are currently snuggling watching Little Mermaid in her bed. This may be the 3rd time she has picked this movie…

One highlight of our day was when nurse Holly (our navigator nurse) came in to visit with mom and dad.  Madelyn discovered the joys of her new fancy bed and all of her buttons.  We looked over and she was laying on her belly with her feet off the bed, rolling around and giggling.  This was really the first time she ‘let loose’ with her port / I.V. and the giggles were priceless. 🙂     

Madelyn had more visitors today and mom went outside for the first time since we got here. It was refreshing and needed.  I only had 1 beer but it was refreshing.  

Dr. Mitchell is happy with her numbers. Her immune system is almost nonexistent at this point though which is scary to think about. However it’s what you have to do to get rid of the Leukemia. Brad just ordered enough hand sanitizer, antibacterial soap and clorox wipes to last us a lifetime. We feel pretty helpless just sitting here so prepping makes us feel like we have some control.

Ps… Thank you all so much for the love, support and kind words.  They truly mean the world to us as we fight through this battle with Madelyn.  

WBC: 2,000
HGB: 8.3
platelets: 46,000
ANC: 220  (Which means we can’t leave the floor anymore)
67% blast cells

Is it only day 3?? It feels like it’s been a month. However today was actually a very good day. Madelyn felt pretty good. She didn’t complain about her port hurting too much and she wasn’t nauseous. She tires easily but she seem more like herself today. We walked the halls and went to the play room. We played Uno, Sorry, Farkle, Yeti in my Spaghetti and did arts and crafts. The nurses came up with a reward system for taking her meds. She got to pick out of the massive “treasure box” if she took all her AM meds. It was still a challenge but she did them and got her treasure. They let us have a pass and we took a wheelchair down to the lobby. She walked around the gift store for 30 minutes. =) We got to see her beautiful smile and hear her laugh today. It was just want we all needed. Then she rocked her PM meds tonight! We could tell she did not want to take them but she’s such a big girl and knows she is suppose to. We were very proud of her tonight. 
Her levels were good today so no transfusion.
WBC: 7220
HGB:  8.7
Platelets: 53,000
ANC: 320
87% blasts

Our only heart breaking moment was when they told us she can’t have another pass to go down stairs to the gift store/ ice cream store  or upstairs to the large play room until her ANC level is over 500. We could tell she was disappointed and it broke our hearts. 

Some friends brought us comfy non hospital grade pillow and blankets so hopefully mom and dad sleep a little better tonight. 

She had a good morning. Complained of pain at the port site but she walked down the halls with mom and dad and went to the play room. We did game in the room and colored. Grandma Julie brought Parker up to see us. She chatted with them and went to the play room once more. Then we could tell she was getting VERY tired. She crashed hard right before Aunt Issa, Uncle Shane, Will and Landon got here. She slept for at least 4 hours.

She started all her meds today:
IV Chemo, Vincristine. On a schedule
Decadron, (steroid) twice a day
Zantac (helps GI tract during this process) twice a day
Allopurinol once a day to help low uric acid in the blood. All the waste from the chemo killing the blast cells.

After she woke from her long nap she had a rough evening. She vomited twice and fought us very hard on taking any meds. She was nauseous and didn’t feel well. They gave her meds for nausea and offered pain meds which she refused. This was the worst evening we’ve had. It was very challenging on mom and dad. Watching her be so sick and then trying to encourage her to take more meds that we knew weren’t going to make her feel better (today) was very hard.

Journal entry by Shannon Neil — Nov 3, 2019Madelyn got an official diagnosis of B Cell Acute Lymphoblastic Leukemia (ALL). 
 It is cancer of the blood and bone marrow. Blood cells that are made in the bone marrow include the white blood cells (WBCs), red blood cells (RBCs), and platelets. WBC are the infection-fighting cells, RBC provide oxygen and energy to the body and platelets help blood to clot. Leukemia occurs as a result of abnormal growth of immature blood cells called blast cells. The blast cells grow out of control and crowd-out the normal cells in the bone marrow and spill out into the bloodstream. As a result leukemia may be found in other parts of the body such as the lymph nodes, liver, spleen, central nervous system (brain and spinal cord ,SC), skin and organs. Madelyn’s spinal tab came back clear so she doesn’t not have any blast cells (leukemia) in her brain or SC. This was great news. She would have needed radiation if it was positive.

Leukemia is not described in stages 1-4 like breast cancer. It is described in risk groups, standard and high risk. Currently Madelyn is in the standard risk group. We have a few more test to get back which could change that. However both risk groups have a very good prognosis. You just treat them a little different.

She had a good morning especially considering she could not eat until after her 3 PM surgery. She was sedated to have a spinal tap and place her port. The port is a small metal disk that is placed under the skin on her chest. It is attached to a catheter (a thin, flexible tube) that is threaded into a large vein above the right side of the heart called the superior vena cava. A port is used to give intravenous fluids, blood transfusions, chemotherapy, and other drugs. She will probably have the port for 2 years. 

She had her first small dose of Cytarabine (chemo) into the spinal fluid during the spinal tap.
That evening she when the meds wore off she was in some pain from the port and was over all just exhausted. She struggled to get comfortable early that evening but after a good dose of pain meds she slept decent that night from 12-6. 

Our room was ready when Madelyn and I arrived.  They did her first blood transfusion, drew blood to run more test and started her on IV antibiotics. Brad and Dan made in around midnight. The on-call Oncologist came a little after that. He was very informative and told us he was 99% sure she has Leukemia but he wont have an official diagnosis until some test come in the next day. Madelyn passed out and slept all night. Mom, Dad and Bumpa maybe caught a cat nap that night.

Madelyn’s levels on 10/31

White Blood Count (WBC): 40,640 with 95% blast cells (Leukemia) 
WBC help fight off infection. Normal count is 5-10,000
Hemoglobin (HGB): 4.2
HGB carries oxygen around the body. This is why she is getting blood transfusion. Normal is more than 12 
Platelets: 46,000 
Platelets help blood clot. Blood transfusions will also help this. Normal is greater than 150,000
Absolute Neutrophil Count (ANC): 460
ANC estimates ability to fight off bacterial infections. Normal is greater than 1000

The last couple of weeks Madelyn was more tired than usual, had a low grade fever off and on, (99 maybe a 100), complained of being cold a few times and was a little more tearful. Now looking back it makes since but at the time it just seemed like she was fighting off some virus or bug. The night before Halloween and again Halloween morning she had a 101 temp. We decided since the fever is getting higher and she didn’t quite seem like herself that we would go ahead and take her in. We were thinking maybe she needed some meds to get her over the hump. At the doctor office they did a throat swab for strep but they noticed her pale hands and lips so they ran her hemoglobin’s. They also palpated her belly and noticed a slightly enlarged liver and spleen. No strep but her hemoglobin was a 4. It would be an understatement to say shit hit the fan pretty quick after that. They brought in Dr. Isreal to help explain things and they called Steph (Dr. Galdes) who is our family friend but also Madelyn’s main pediatrician who wasn’t in the office that day. Steph called me while I was still in the office. She helped keep me calm while they were waiting for some more tests, calling DeVos and doing their doctors stuff. At this point I knew things were bad and we would probably need to be in GR for a night or so but we were still hoping it was some sort of inflammatory blood thing, that I have forgotten the name of. I called Brad from the doctors office. He was traveling home from WI that day. I was hoping I could catch him in O’hare before he boarded his flight to TC. I wanted him to change his flight to GR. I got him right after the doors closed. He thought I was just calling to tell him she had was fine or needed a round of antibiotics. So I freaked him out just in time for them to tell him to turn off his phone. Dr. Isreal gave me his cell phone number and between him and Stef they sent me home to pack our things and drop off Parker with a family friend until Bumpa and Julie could get up to TC. I was then going to pick up Brad from the airport and drive to GR. Dr. Isreal called me and asked me to take her temperature again. She didn’t have a fever at their office. It was 100.5. He didn’t feel comfortable with us traveling that far with her having a fever. I’m guessing he was thinking worst case of Leukemia and her having an infection or virus. So he sent us to the TC ER to get more test run then maybe antibiotics before we went to DeVos. Stef came to sit with us. Then Brad finally landed and Ubered over. After 3.5 hours later and an excruciating “putting the IV in” a doc finally mentioned the word Leukemia. We won’t fret over his horrible delivery or bedside manor. They arranged to take us via ambulance to the mediflght plane and flew Madelyn and I to GR.  Brad and Bumpa drove to GR, in our first snow ice storm of the season.

Madelyn is our spunky little 5 (soon to be 6) year old. Currently in life, she loves unicorns, the color pink & purple, Uno, yoga and any sort of swinging gymnastics. Madelyn is in her first year of kindergarten. She really doesn’t love drop offs from mom but she is a spit fire of excitement when we pick her up at the end of the day. She is a social butterfly that loves to go play and ride bikes with the neighborhood kids. She adores our (her) dog Mozzie and is starting to ask for a new puppy for HIM to play with. She is best friends with her little brother Parker especially on days that he does exactly what she tells him to. =)

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