Author: shannonneil

We are now 3 months into maintenance, and it is going well! Madelyn’s hair is growing, and she is FULL of energy. Besides the first week of maintenance we haven’t had many side effects. We have also gotten the chance to do our monthly port flush and number count at the cancer center here in TC which is very nice! The only set back we’ve had was a summer cold that ran through the family. With her fever protocol (anything over 101) unfortunately, she had to make a trip to the ER. She was extremely upset by this to say the least and was all but cooperative. Eek we’ve been lucky with limited ER trips so let’s keep our fingers cross she keeps that up.

The summer was full of local adventures and family time. We went camping twice which we all loved. Madelyn and a neighbor, Elise, put on a gymnastics performance for a few neighbors! It was quite the show! It involved tickets, music and a choregraphed routine! The girls rocked it and also had a blast. Madelyn continues to show interest in gymnastics and is begging to get back into classes. She practices almost every day and has gained so much strength this summer! Recently she has mastered a pullover on the bar and a back bend kickover. She does handstands and cartwheels everywhere she goes, including during her soccer games. This is also amazing considering she doesn’t have any knee reflexes at the moment. Chemo induced peripheral neuropathy is one of those many lovely possible side effects. Luckily as of now it has not affected her strength or sensation. We’ve rolled a few ankles but that’s it. Hopefully when we are done with chemo it will get better.

As summer came to an end, we were advised by her Oncology team about the upcoming school year. They suggested both the kids stay home from school and do virtual learning for 8-10 weeks. Then we will evaluate how the school is doing with CoVid and flu cases and decided it it’s safe to go back or if we need to stay home longer. Madelyn is doing a “live” reading and math class with Mrs. Simons which is on and off the computer from 8:30-11. Then we are doing an on-demand classes for science, social studies, art, music and PE. Mom and Parker are working on letters, numbers, and phonics. All while trying to keep it fun! Easier said than done and it’s a lot of work! =)

We also surprised the kids with a PUPPY in September! The kids were SO excited!! The timing seemed like it was going to work out great. We would get him a week before both kids went back to school.  I could potty train him with no distractions and get unlimited solo Arnie snuggles. Sounded great! Then.. Mozzie tore his ACL and needed surgery a week before we got Arnie and DeVos told us we are doing virtual learning. HA! It was a bit nutzo over here for a while! We did make a seriously cute little classroom in the basement. However, I caved and said forget it and were currently using the kitchen table. Carrying Mozzie up/down the stairs and cleaning up Arnies accidents on the carpet downstairs was adding unnecessary stress. I think we have finally found our groove and mom has given up on trying to keep the kitchen clean. I’ve heard complaints that the teacher is a little strict, but they sure do love her when they fill their marble jar. =)

Madelyn has started her second round of Maintenance. She is on a 3-month continual rotation for then next year and 4 months. Maintenance was the first time in a long time that she had a long break form IV chemo and steroids. It was great! She does take pill chemos every day but the IV chemo with steroids changes her personality. We had forgotten how much she changes until we went thought it again. She is hungrier than a bear which is a pain but fine. But she gets moody, irritable, sassy, feisty and turns into a serious know it all. She doesn’t want to play with Parker as much during that time which confuses him and causes fights. Then I’d say after 2 weeks it fades away and she’s back to her normal self.

Madelyn and Parker are also both playing fall soccer. Her IV chemo week you could tell she was tired and slow however she never complained. The next week she was keeping up with girls and having a blast. It’s hard to believe we are coming up on her one-year cancerversary. With CoVid Halloween will be a bit different this year but we are determined to make it a fun and happy day!

Oh and the tooth fairy has made several visits!! Very exciting stuff. Madelyn pulled both her front teeth in the last few months!

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 6^th. 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 10^th, 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!

We took a family vacation to Florida during our two-week break between chemo sessions. It was a fabulous escape for all of us. She only got nauseous and sick a few times. For majority of the trip both kids swam, ran, played and thrived. We were really able to relax and not think about our next trip to DeVos. It was a perfect recharge to get us ready for this next phase of delayed intensification. I am extremely grateful for our timing and that we were able to go and get back before Covid-19 hit the US.

Madelyn is now on her second week of delayed intensification. She officially learned to swallow pills! We are so proud, and this has already proved to make our life significantly easier! Our deal was if she could learn to swallow pills, we would buy her the Nintendo Switch. Yes, I know, it was a bit overboard however last week she had to swallow 6-8 pills every morning and night!! Crushing that amount and mixing it with pudding, especially when she is nauseous, would have been terrible! She has been rocking taking her pills. She doesn’t use water which we find kind of odd. She places the pill at the back of her throat and lets it “slide” down. I would gag if I attempted this, lol but she seems to make it work.

She is on some new chemo’s and just finished her first week of high levels of steroids. Her hunger was insane for a few days and now we are experiencing the disruption of sleep at night. She is WIDE awake at 3 am. Lessoned learned to mom and dad, don’t stay up late drinking and playing her new video game! 

People have asked how we are doing with all the panic and worry about the coronavirus. Her physicians have said she is at a slightly greater risk than the average 6-year-old. However, they aren’t in panic lockdown mode at this time. They recommend we follow the CDC guidelines of social distancing. My biggest fear of all of this is if she gets it that probably means we all get it. Then who will go with her to hospital when she has to get poked in her port and arm? She hates being poked and really only wants mom. Average kids her age can probably fight through it without needing to take a trip to the ER. We have to go to the ER if she has a fever of 101 or higher. Then that raises my second fear. If people don’t follow social distancing and our hospitals do get over crowded what happens if Madelyn gets a blood infection or blood clot or any other complication of her current treatments? Those are all what ifs and not under my control so I’m not going to stress or waste too much time worrying. We are currently focusing on building enough Leprechaun traps to cover the whole house. They REALLY want to catch him this year. =) wish us luck!

We are slowly marking off another phase of treatment! Madelyn has one more session of chemo to finish this 56 day session. After that we are blessed with a two week break before we start our next phase. Besides our ER visits at the very beginning of this phase Madelyn has tolerated it very well. She does get nauseous and sometimes sick the first few days after she gets her chemo but it doesn’t seem to linger for too long. She has gone to school almost every day during this phase which is fabulous. It’s also a tad surprising since this year’s cold and flu season is no joke. She has had a few runny noses and low grade fevers but so far she’s been able to fight it off.  It always makes us nervous, but it just shows us her immune system is still working. She is also rocking ski lessons on Sundays with her brother Parker. 

We’ve been warned that the next phase of treatment is intense and includes several pills. Madelyn really struggles with taking crushed pills or liquid meds when she is nauseous, so we have been practicing (okay bribing) her to swallow pills. I’m happy to announce she has mastered it!! We are really hoping that will help with this next phase.

We have been prepping for months for her hair to fall out. So far she has only had very mild thinning. The doctors said everyone responds to the chemo differently. It could still fall out in the next couple of months or she may not lose it! I guess time will tell. So far with all the highs and lows we feel fortunate that we’ve made it 3 ½ months with only mild road bumps!

The past 2 and a half months have been a roller coaster. Literally we have amazing days when both kids are happy, healthy, playing and we forget for a few hours that we’re battling cancer. Then the very next day she could be nauseous and just to get her to take a single crushed pill takes us an hour, longer if she throws it up and we have to do it again. Yesterday was a long hard day. I try not to focus too much on the hard times but I thought I’d change it up and give a blow by blow of what a hard day can look like.

Sunday morning Madelyn came in to our room and said “Mom, I think I need to throw up” in my just woke up fog I half leaped half fell out of bed and followed her to the bathroom. She vomited a little and dry heaved even more. However then we took a Zofran and she seemed good.

We went down stairs to snuggle and watch TV. A few minutes later Parker came running down giggling and ready to snuggle mom. 

Brad brought mom a coffee and joined us on the couch. We just booked our new dates for our Florida trip (to fit into her chemo schedule) the night before so we told the kiddos and spent an hour all googling and watching you tube videos of water parks in Orlando and Tampa. The kids were so excited! The sun was out which really makes us northern Michigan folks excited in the winter so we were ready to face the day! Madelyn has been nauseous since her chemo on Friday so we were wrapping our heads around the battle we would have with morning meds. Mom gave Madelyn a kiss on the forehead. A new norm for mom and dad to check for temps, and she felt warm. Took her temp.. 102.6.. we always take it twice. Once on each side of the tongue. Both in the 102 range. Panic set in… Brad could read it in my face so then we were both in panic mode. Our nice morning, of how could we go enjoy this sunshine before our ski lessons just turned to this is going to be a long crappy day that we hope doesn’t escalate to anything serious. Protocol is to call DeVos with a temp of 101 or higher. So as I have the phone to my ear I’m looking for the lidocaine and press n seal wrap that I know they are going to make me use on her. Madelyn starts crying when she realizes the lidocaine is out. She knows that means she is going to get poked and she wants to know where and how many times. I stop and sit with her trying to get her to quiet while I’m talking to an operator then the on-call oncologist. Sure enough, they want lidocaine on both arms and her port. They call the ER at Munson to let them know we are coming so we don’t have to wait with all the sick people in the waiting room. In the mean time Brad has already predicted we’re headed to the ER and is packing our go bag with all her meds, paper work, iPads, card games and snacks. Parker is confused and not a fan of us running around telling him to get ready to get out the door and Madelyn is still crying. We somehow manage to get everyone in the car. The closer we get the more she cries. She hates being poked and she knows she’s going to get at least two. When we get there we mask everyone up. Last thing we need to to catch RSV or the flu! I demand no one touches any surfaces until we get registered and in the room. That is where we spend the next 6 hours. Which included accessing her port, blood draw from her arm, chest x ray, nose swab for the flu, 2 rounds of IV antibiotics, vomiting up our AM oral meds that we finally got around to taking, mom begging to have those meds delivered via IV, and IV Tylenol since we didn’t want to force her to attempt oral meds again and vomit. We had had enough. Parker was bored by this point however he did amazing considering how long we were there. All the test came back good. We are still waiting on two blood cultures if those are negative I believe we are chalking it up as a reaction to her Chemo or fighting a virus. We were finally going to head home. But not before we have to remove the large tape on Madelyn’s chest and pull the butterfly iv from her port. This part really sucks and always makes her cry.

The next morning a DeVos nurse checked in with us. She said if her temp is 101 or higher after 12:00 to call them back. It stayed in the 99 and 100 range until 1:30. I took her temp with our thermometer DeVos gave us and got one reading over 101. So I grabbed our other thermometer and took it again. Under the left side of the tongue read 99.9 and 100.5 and under the right side of her tongue I got 101.5 and 101.7. I seriously hate thermometers! What do all those number even mean?!? So I called DeVos and told her my story with the two thermometers and 4 readings. She told me we were going back to the ER. Ugh!! Madelyn is beside herself now. She keeps saying “I don’t want to go!!” And screamed bloody murder when I put on all her lidocaine patches. We thought it was best to leave dad and Parker at home for our 4.5 hour trip to the ER. She got another round of blood cultures from an arm draw and from her port so two more pokes. Then she got 2 more rounds of IV antibiotics. We won’t hear on her cultures until tomorrow and or the next day. However Surely tomorrow all those antibiotics will fight off whatever is going on. Poor girl. On a happy note besides some nausea, needles, bad-aides and tape she is happy and acting normal. She was all excited for her new game that arrive today (Christmas money purchase) so she took her evening meds quickly and played for a bit before I declared night time. Mom is looking forward to some peace, quiet and wine.

Our “2 years of chemo” officially started on Friday. We are hopefully we have more ups than downs but I’m sure it will still be a roller coaster.

The last few weeks Madelyn has gotten back into a normal routine. She’s is up and dressed before any of us and running down the stairs looking for Elfie. Her eating is back to normal, if not a little less than pre leukemia. She is sleeping through the night again and she has more energy. Last week Brad and I were drinking our coffee and she ran through the room! It was the first time she has ran since Halloween. 🙂 We started back to school doing half days and are now going full days! She’s seems to be tolerating it okay. However mom feels likes it’s the first month of school with getting lunch packed and two kids out the door on time! It’s going to be even harder when the last round of family flies back to Oklahoma. We’ve gotten use to all the extra help in the house. 🙂

Madelyn has lost some of her steroid weight and can now zip up her snow pants. This girl has gone through so many changes in just 7 weeks. Our current month of meds do occasionally make her nauseous in the mornings and she’s gotten sick a few times. However it seems short lived and she’s able to move on fairly quick. One of the biggest joys for Brad and I are seeing her and Parker play again. A) it gives us a break from board games 🤪 but B) they were best buds before this and use to play together all the time.

We are going down to GR about once a week for treatments which makes for very long days but were hanging in there. Parker still doesn’t understand and doesn’t like when mom and sister leave him behind. Our next trip is an 8am appointment so all 4 of us are going down the night before and making a mini vacation out of it full of swimming and adventures. Then after that Christmas will be here before we know it! I hope you all have a Merry Christmas and Happy New Year!

It’s confirmed!! Madelyn is officially in remission!! We are so very excited and relieved. We are still facing 2 years of chemo to stay in remission and to hopefully kick Leukemia officially to the curb. However we could not be more thankful for the news we were blessed with today. Thank you for all the love and prayers.

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 😊