Month: November 2019

We have officially finished the Induction Phase! Madelyn’s numbers look great. She had a spinal tap and bone biopsy done today. We thought we would get the results today but I guess they take a few days. Everyone seems optimistic that they will confirm she is in remission! We will do another post when we get those back.

Brad and I took Madelyn swimming in the hotel last night which was a fun treat! Parker stayed in TC with Grandpa. One of the side effects of the meds is muscle fatigue which we’ve noticed more of it in the last week. She has a hard time on the stairs, getting in and out of the truck and is tripping more. The pool is a fun easier way to get in some movement. Our last dose of the steroids are tonight! So thankful! However they did say the extreme hunger could linger another week..

It has been a very long month and I think it’s finally catching up to all of us. We are looking forward to picking out our tree and putting up Christmas decorations. It will give us a nice change of pace for the next month while we truck through our next phase of treatment: consolidation/intensification.

We are officially 3 weeks into this now. Wow is it hard to summarize all the ‘ups and downs’, but I feel like we are in our routine now and feeling optimistic about her numbers and the success of her treatment. 

Our daily routine still consists of an abundant amount of Uno games, fried egg whites (maybe 8 a day), cheese puffs, cheese squares and rest time. Mimi did finally make it and she got her fair share of board and card games this week! Madelyn is also waking more during the night thanks to the steroids. Sometimes hungry and asking for food and sometimes just awake. She is more tired that her old 5-year-old self. She has spurts (sometimes all day, sometimes only a few hours daily) of energy which is when we encourage a small walk around the block or anything that involves getting a breath of fresh air. We did our first “outing” to Costco last week. We overly cleaned the cart with Lysol and Clorox wipes then stuck her in the large part of the shopping basket. We did probably one of our quickest shopping trips there EVER followed by globs of hand sanitizer =) but it was so nice getting her out of the house. 

We are a little worried about all our time at home and re-socializing her when the time comes. We have limited kid guest the last 3 weeks and she hasn’t really played with her brother Parker like she used to. So, it was a special treat to have our family friends (who are healthy and germ free!) come visit this week. It melted our heart to see Madelyn move around and play with Margot.

One of the things that I’ve been struggling with is her physical appearance from the steroids. Her cheeks and belly are quite puffy. We knew she’d gain some weight, but she just doesn’t look the same to me right now. I’m getting used to it but it’s hard to see your child charge so drastically so fast! Another thing we are dreading is the probable hair loss from the chemo. We have been avoiding telling her for so many reasons but finally mustered up the courage and did it yesterday. We have a children’s book that helped us get through it without crying, mostly. She was of course sad, but she handled it much better than we anticipated. 

The last several Fridays have been our days to go back to DeVos for Chemo. However we decided we would all go down as a family to get her port checked Thursday evening then go swim at the hotel! She has had some symptoms (during the week) that made the doctors concerned for her liver function, so they called and told us Wednesday evening to come down Thursday AM first thing for a US of her liver. This meant we probably weren’t going to be able to swim which was a bummer! We also had to break it to her that she couldn’t eat after 2 am. We agreed the starving child on steroids would not handle this well, so we set our alarm for 1 AM and made her a middle of the night meal which consisted of: an egg and cheese roll up, two fried egg whites, Doritos and a cheese square. Breakfast of champions.. She inhaled almost all of it. Then we woke to our second alarm at 5:40 to get us all up and out the door. It was a long day but ended as best as we could have hoped for. Her liver is fine, they cleared her port so she can do full baths and swim and she was able to get her Chemo a day early so we could be done and able to drive home! More good news came with her lab results today. Her numbers keep trending positively and we’re told they are ‘on track.’  We’re now hopeful (and praying) next Friday she learns she is in remission…  Fingers crossed and Happy Thanksgiving J

On a side note, Parker used the couch as a trampoline this week and landed head first on the side table which scored him an impressive black eye. =/

We now have one week at home under our belt. We also did our first “clinic” visit to DeVos yesterday. Madelyn had her port accessed for the first time. Basically like getting an IV in your arm but they put the little needle in the port that is under her skin on her chest. There is a picture of the port in her “Hospital Book” under the information tab on her site if you want a visual. She was very nervous. She is a kiddo that really likes to know what is going on so we talked through it at least 10 times the 24 hours before. They gave us magic cream (Lidocaine) to put on during our drive to Grand Rapids. It did the trick and numbed her skin. She was still scared but I don’t think it hurt too much. The hardest part was taking off the Tegaderm sticker that was holding the lidocaine on her skin. The first thing they did once we got her port accessed was draw labs and run her numbers. Brad and I have been anxiously waiting for these. In the hospital you get these numbers every morning and it’s a big part of your daily routine. So going without them for a week was challenging and a bit scary just not knowing. Well, Madelyn’s numbers came back better than we had hoped!

WBC: 1,180

Hemoglobin: 10.8

Platelets: 107,000

ANC: 390

Percent blast cells in the blood: 0%!!

All of these numbers are an improvement and show that the chemo is doing what it is suppose to be doing. The 0% blast (Leukemia) cells was a breath of fresh of air! However this doesn’t necessarily mean she is in remission quite yet but she is headed in the right direction!! In two weeks they will do a bone marrow biopsy to see if there are any blast cells in her bone marrow. The hope is there is not and that will mean she is in remission! Most children with ALL will achieve remission after the induction phase (two more weeks for us). However studies confirm that if treatment were stopped after the Induction phase, the leukemia cells would return. As a result, therapy will continue for 2 years after diagnosis. The next phase for us is the middle phase called Consolidation /Intensification. The goal of this phase is to kill any remaining leukemia cells and prevent a relapse. The finally phase of treatment is called Maintenance. The goal of this phase is to continue remission. All of the phases will consist of some combination of oral meds at home and trips to the clinic to get chemo.

Madelyn is doing well. She has been getting dressed in the morning. She is still playing lots of games and loves her art projects. The steroids are no joke and the girl is HUNGRY! She currently craves cheese puffs and eggs of all kind; fried egg whites, open egg sandwiches, egg burritos and egg pizzas. Brad has mastered the art of cooking eggs. =)

So you know the saying when it rains it pours…?  Let’s start with poor Bumpa, Grandma and Parker hitting a deer while we were still in the hospital. Luckily, they are all fine however the Jeep not so much.  Parker wasn’t fazed and only asked the whole ride home if ‘it was a momma deer’?

Then our dog sitter calls me crying. I thought for sure Mozzie was a gone-er. I was relieved when I found out he hadn’t but immediately felt terrible when she told me she crashed her car into the bay. Guys she didn’t just slide off the road. The roads were black ice and she slid through the stop sign at Center road (a 55 mph road) and went over a small cliff right into the bay! It’s shallow there so the car didn’t sink but she was completely surrounded by water. Terrible! Luckily, she is okay! Again, her car not so much. 

THEN Mimi has had the world’s worst 30 hours of traveling. Started in Tulsa OK. The flight to Chicago got canceled due to weather and a plane sliding off the runway. Then they sent her to DFW which she spent ALL day. Finally made it to Chicago late last night just in time to run to her Traverse connection flight and miss it. Her Uber never showed to take her to her hotel for the night so she caught a cat nap in O’Hare.. A few more delays today and when they were descending into TC they got word that our airport had closed and they went back to Chicago. Probably because of all the snow and white out conditions. Seriously? 

I’ve decided it is to the point of being comical. Any one of the above in one week would’ve been a story all on its own, but all three is just ridiculous. We are choosing to laugh instead of cry and as Devos told us, one day at a time. 

I might drink an extra glass of wine tonight though. 

I’m sure tomorrow will be better. =)

Where to begin. Adjusting to our new home routine has been a bit harder than we expected. On one hand she is actually doing fairly well. No vomiting. No pain. Which is a huge blessing! She has spurts where she wants to play game after game, do art or make brackets. Then she’ll get tired and watch a show or do something on an iPad. Then we will cycle around again and do some more games. We have definitely seen an increased appetite from her meds. This morning she ate a whole box of Mac n cheese (yes for breakfast , I know.. odd for sure) the she had 4 fried eggs. With no yoke.. one at a time. She kept asking for more. A bag of cheese puffs, an egg pizza and lots of snacks. It can be hard to keep up.

What’s hardest is you can just see it in her that she doesn’t feel 100% even though she doesn’t complain. Her belly is swollen, from all the eating I’m sure but also from the steroids. She cries when we make her take her meds (twice a day) and she just seems a little different. She use to wake up around 7 everyday and get dressed. Usually in a dress and legging before she would come out of her room and come find us. Now she rolls out of bed and refuses to get out of pjs. We persuaded her to put on her snow gear today and get a breath of fresh air. We pulled her on the sled and everything. She lasted maybe 10 minute and begged to go back inside. It’s just hard to watch as she use to have so much fire in her.

Then on the other hand we have Parker, a 4 year old boy full of non stop energy. Brad and I are doing our best to give him our attention but we have to divide and conquer a lot. We have a great support group that would love to take him for play dates and I’m sure at some point we will agree. However he was already away from us all last week. We missed him for one but we also don’t want him to feel neglected. As we get adjusted to our new norm we pray for more patience and more energy. 🙂 We will get through this. One day at a time.

Hi all… We’ve learned that blogging is a bit more ‘work’ then we expected 😊 What we have figured out in the last 10 days, is that this is definitely a marathon and not a sprint.

Since we last talked, our days in Devos ended relatively well.  We had a 40^th Bday party for Aunt Melissa, we were unhooked from our I.V. tube for a good chunk of the last 2 days, and Madelyn got to visit the 10^th floor which is where all of her out-patient visits will take place.  Aunt ‘Issa’ wasn’t overly excited to turn 40 to begin with, so cupcakes and chocolate milk seemed perfect.  A lot of the last few days in Devos consisted of games, movies, slow walks and some nap time in the middle of the day.  With how crazy the first 48 hrs were, both Brad and I couldn’t believe how much and quickly the daily routine changed.  Seeing Madelyn unhooked from the I.V. was truly one of those moments you cherish.  When we finally got her to go for a walk with no I.V., it took maybe 20 feet before she skipped for the first time and you could tell she realized she was ‘free’.  We actually did 3 laps that first walk and the pace was quickly back to her norm and hard to keep up with.

The first morning she woke up without her I.V. connected, mom went to get us our daily coffee’s.  When I got back, Madelyn and dad were sitting in the reclining chair and chit-chatting.  Dad was very excited because he was able to convince Madelyn to get out of ‘the other side of bed’ (remember, no I.V.) and climb up into the recliner and snuggle.  What I learned later on is that the first thing Madelyn told dad in their talks was that she’d like a new puppy.  We’re not quite sure where the comment came from but it seems she wasn’t kidding… We didn’t say yes but how do you tell a sweet little girl who has cancer she can’t have a puppy. We will keep you posted on this. Maybe a good surprise gift down the road. Shhh…

Mostly because of Brad’s work and being in the food industry, going to the grocery story was a weekly / weekend highlight (for him).  As we now have Madelyn with an extreme low immune system for some weeks ahead, we finally went ahead and signed up for the Meijer Shipt service.  Brad quickly warmed up to this and spent most of Friday morning snuggled up with Madelyn coming up with a grocery list.  Who knew, cinnamon rolls, cheese puffs, oreo’s and the lucky charm version with frosted flakes and unicorns combined was all needed… We were told that the daily steroid that Madelyn is on would greatly increase her hunger.  Now being home for a few days, we are starting to see it and meal time is ‘as needed’ at the moment.

On Friday, Madelyn had her 2^nd surgery.  This was much simpler than the first and she only had a spinal tap, chemo into her spinal column and de-access of her port.  For this one she was maybe under for 20 mins.  Madelyn enjoyed the Frozen Band-Aids and mom and dad enjoyed the news that her test showed up again with zero blast cells in the spine / brain.  After Madelyn had her surgery on Friday, we finally convinced her to use the salon style hair wash station and clean her hair.    After 8-9 days now of not being able to wash her hair, I can’t lie it was starting to get a bit matted 😊  Friday check-out at Devos was very simple and a bit anticlimax.  As we’d come to expect with Devos, they had ALL of the paperwork in order and more or less we were free to go right after her surgery.

Home… I think I’ll save my update on how home as been till the next post.  Just know Madelyn is doing well.  Mom and Dad might be missing the nurses to give her the Med’s but overall she’s still hanging in there.        

Alright y’all I just wanted to give a quick update. We are home!! I can’t express how wonderful it feels. Yet semi terrifying… Her immune system is still pretty much nonexistent right now.

I’ll give you more details on the last 48 hours tomorrow. Tonight we are going to snuggle Moz and enjoy sleeping in our own beds. We have received so much love and support this week and we can’t express how much it means to us.

Hugs

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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