Madelyn’s Journey with ALL

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!

“If you want to be happy, be.” … I ran across this quote the other day and my first though was, Madelyn. She obviously has been thrown a big speedbump here in this game we all call life. Somehow though, she has not missed a beat. Through all the pokes, Dr. visits to GR, different medicines etc. her beat goes on and she is a happy little girl. She’s always had an infectious personality and to this day, she still has that ‘it’ to make those around her smile and be… happy.  (I’d love to say she got that from me, but…)

Back to ‘Delayed Intensification’. When this all started, about 3 days in. Dr. Mitchell sat Shannon, myself and my Dad down and went through the short term and more macro plan. Mitchell touched on all sorts of scary topics, big words and how she saw the next few years going. I was at best catching 50% of the conversation, my head was more worried about Madelyn being in surgery and getting the results on if cancer had spread into her spine/brain. This was the conversation though where we first heard the word ‘Delayed Intensification’ and we both recall her just saying something like, ‘we will talk more on this part down the road’. A few weeks later, we were back in Devos and our Resident Doc talked on Delayed Intensification. He was open how this would be most likely ne her hardest part (besides the 1^st month) of all the treatments.  The most chemo’s (8 different types total), new chemo’s, heavy steroids, trips to Devos etc. To put it simply, Delayed Intensification has been a scary word since this started and Mom and Dad have been really dreading this part.

Delayed Intensification started for us not long after our Florida trip. In FL, Shannon and I talked on what was coming up and just trying to get our minds back to a spot like the first month of this and get ready. (sorry for all families who probably didn’t get SB this year cause of our friend Covid). 

‘DI’ was really broken down into two different 21-day treatment plans with a week in between.  The first part started with steroids and a double thigh injection of chemo.  The steroids were a double dose from the first month and to say it nicely, the leg injection (I think) has been Madelyn’s least favorite form of getting a chemo. Madelyn is quite the worrier and she was in full worry mode for probably 48 hrs. before this one. You might remember the steroids from the first month with extra eating, weight and just getting her to the point where getting up and down the stairs was a struggle.

The second part of DI was some form a special chemo pill that only was available out of California. Shannon spent quite a few hours on the phone sorting out the logistics of this one.  The other new chemo for this part was one we did at our house in Traverse City. Madelyn would leave Devos still accessed and Shannon gave her the pushed chemo at home through her port. Shannon twice then had to de-access her at home and pulling the butterfly needle out.  Madelyn hated being accessed at home.  Not because it actually hurt, but it’s just unconformable and awkward with the tube hanging down to her bellybutton and tape all over. 

We decided to do an update today as Madelyn has officially taken her last chemo pill from California and technically is now ‘off’ for 14 days before the next phase starts up. Even writing the above, I’m still amazed at this phase and all the things she had to go through. Our bribe of learning to swallow pills and her getting a Nintendo Switch handsomely paid off.  For about 14 days in DI, she had ~7 pills both morning and night. We also didn’t know Covid would be part of DI and the Switch has come in handy for the full family!

So how has the last 45 days gone I’m sure you’re asking yourself by now… We quickly re-remember that the steroid is a powerful drug.  Madelyn got her eating itch back and fast weight gain (only about 6 lbs. this time but still a huge %). Waking up at 3am and being wideawake was normal again. About a month ago, she started losing a lot of hair. We thought for sure it was finally coming out. Madelyn loved the idea to color her hair pink, so mom bought the permanent hair dye. What nobody told us is that as quickly as she was losing it, she could also go back to not losing it. She currently is very thin (she did get that from her dad) but loving and rocking the pink hair. At this point, it looks like a coinflip if she loses it all or not. 

The first part of DI, Madelyn was tired and not feeling well but still more ups then downs. The 2^nd part of DI, she’s felt quite good. Almost overly happy which mom and dad aren’t quite sure how that’s possible, but we’ll take it. Like most of you with Covid and the stay at home orders. We spend every second at home. Even with some colder weather, we make the kids everyday get outside at some point. Even with all of the above, Parker has a hard time keeping up with Madelyn. We were fully expecting DI to drain her and zap all of her energy. Take away the first few weeks, she currently seems to be 100% a go.

All in all, we were quite worried going into this phase. Had our heads back to the first month and assumed that would be new normal. It hasn’t been easy by any stretch. Writing this made realize I forgot how much she really took in DI, how much her body has been through and all the trips to Devos. The Doctors told us early on kids our tougher and more resilient then you think they are. Once again, they were right.

Stay safe out there with this crazy new normal and hoping to see everyone soon!

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.

I’ve now had several weeks off of work and its been on my list to do a blog all break.  What can I say, I’m a very good procrastinator…  I actually started a blog on my first flight after we found all of this out, but only made it a few paragraphs in.  That blog was/is my view starting from the beginning of Madelyn’s fight.  I’ll get back to that one eventually, but for now I wanted to give an update about the Holidays and how Madelyn is doing.

The last week of school before Christmas break officially started, didn’t go exactly as planned for us.  Nothing urgent, but she only ended up making a few ½ days.  Going into the week she was on track to do her first full week of school but the main med after her steroid reared its ugly head.  This med we only saw one real side effect and it was nausea.  It only last for about 10 days but most mornings in this stretch she’d wake up and feel not bad, but then the nauseous feeling would kick in and she’d have a 45-60 min rough go.  As the days of this week went on we got better helping her through it but this kept her out of school most mornings.  She also in this stretch got her first fever towards the latter part of the week.  101 is our cutoff before we have to call Devos.  She maybe got up to a little over 100 deg, but with most the school fighting through the first round of sickness we figured it was best to keep her home.  The fever probably scared mom and dad more as she never looked or felt sick.

By Christmas time the nausea had gotten better for Madelyn.  She was starting to move and play like normal, and her bubbly personality was back.  A lot of people got to see her for the first time over the last few weeks and I think a lot were quite surprised how ‘normal’ she is right now.  For most of the day I can’t lie, she has been her old self in every way.  Riding her bike fast again, running up the stairs, climbing in bed in the morning and jumping on dad, doing yoga with mom…  Right now though the only part of the day which isn’t ‘normal’ is when she has to take her med’s.  We’re now about 65 days into this whole journey and I’d say around day 50, taking med’s became a battle.  Most med sessions we could crush up the pills, get her to take her bite of chocolate pudding, have cheese puffs and milk in waiting and life would move along.  We now can’t seem to find a combination of anything that she likes.  She knows its coming each night and the moment when the words ‘hey Madelyn, its time to take your meds…’ happens, she gives you that look and breaks into tears.  It’s definitely a hard part of the day, but once she does get through it she goes back to ‘normal’ we usually end of night happy and with a game or two of cards. 

Back to Christmas… Her Santa wish list this year was a foot spa and a bath bomb maker.  Luckily Santa was able to find both and she truly had a great Christmas morning.  Dad even tried the foot spa with her and with a few salts in the water it was quite delightful 😊.  We have stayed very busy over the break and I think for Madelyn (and I know mom and dad), it was just a great time to be active and really have a normal holiday.  I use the word ‘normal’ a lot right now as that and to stay ‘on-track’ is our goal with each and every step. 

December 23rd we did a trip to Devos for her weekly treatments.  This one was unique for Dad as I was the one who had to take her to get accessed and treated.  Mom was fighting through a cough and cold.  Madelyn wasn’t happy with the situation, but her and I made it through.  Getting the port accessed doesn’t hurt at all thanks to lidocaine, but man it sure is scary.  The nurse beforehand gave me 3 jobs.  Be very still and do not move, do not touch the area and don’t cough on the clean part.  I did all 3 but I have to admit, its just plan scary for her and parent.  After we got accessed we waited for the blood results (all good) and then it was off for her spinal tap.  The spinal tap is interesting to me.  When that is all they are doing, she is only out for about 5 mins.  Seems easy enough, right.  But, each time I’m asked to sign a consent form, watch 5-6, doctors, nurses, specialist come into the room ‘just’ for a 5 min procedure.  They always let us give her a quick kiss goodbye, without fail I can’t do it without getting quite choked up. 

All in all she and our family had good break.  Everyone got a cough and sniffle at some point which I assume a lot of families out there had.  Madelyn even got a double ear infection towards the end of break.  Only the first night she woke up with any pain so that was the good news…  Adding that doctor visit though into the same day where she was supposed to get blood drawn up here in TC for the first time was a long and rough day.  We made it through but easily our hardest day since coming home and this all started.  That 24 hrs. deserves a post on its own as it was just one of those days!  Towards the end mom and dad were even hoping for a quick happy hour to  end the day.  After the double shot into her thighs though it was time to come home and snuggle up and watch a movie.    

As much as we love her and Parker, this morning we were sure ready to get them back to school 😊

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