Journal

Journal entry by Bonnie Manzeck

I’m going to be lazy and just copy what I just updated FaceBook with since I know some people aren’t on FB.....

Today marks the return of Katie back to classes at UW La Crosse🧡  To be honest we never thought we would make it to this day when she had to leave on October 29, 2018. What a rough 15 months....and she has another 14 months of treatment to go. Monthly chemo appointments back in Milwaukee and daily, weekly and monthly chemo pills. Still moving slow, can become tired easily and battles nausea but this is the next step to trying to get back to a “normal” life! Her immune system is very low and she is very susceptible to infection and if she gets a fever will have to go to the ER. Please send positive thoughts that she stays healthy🌟
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Journal entry by Bonnie Manzeck

Katie started Maintenance on September 13th and is now 2 1/2 months in.  She has to do a total of 18 months of Maintenance.  This means monthly clinic appointments to get the chemo, Vincristine, and her port accessed and flushed.  In addition to this, she takes a daily chemo pill, a weekly dose of the chemo pill, Methotrexate, and 5 days per month of steroids.  She will get a spinal tap every 3 months so they can check her spinal fluid for no signs of cancer cells. The final chemo she has to get is a 5 day cycle of Nalarbine which she has to do three times over the course of the first 9 months of Maintenance. She finished the first 5 day cycle in October. She will have another one at the beginning of January and again in March.  

The first month of Maintenance was rough. The Methorexate was making her VERY nauseous and exhausted.  She takes it on Friday so pretty much the whole weekend was crap. She would take a 2-3 hour nap on Sat and Sun. Now that she's two months in, she's not as tired and she doesn't have to take as much nausea medicine.  

Katie is going to PT weekly and has made progress with her walking, balance and endurance. She is still working on going up and down steps. We are hoping that each month she gains a little more strength since she isn't taking as high of doses of chemo. 

The Biology class that Katie is taking at MATC is going well.  It's mostly review of things she had in High School but hey, it's 5 credits and she can transfer them back to La Crosse.  It's definitely a lot cheaper to take at MATC so that's a bonus! She is also finishing up her Psych class that she had been taking in the Fall of 2018 at La Crosse when she was diagnosed.  The professor is letting her finish the class online so that will be another 4 credits. In total, Katie will get nine credits this semester which I think is pretty impressive considering that she isn't always feeling the best. 

The plan is for Katie to return to UW-LaCrosse at the end of January for the Spring Semester!!  She had early access to sign up for Spring classes so she was able to make sure she has enough time to move between classes. We are also working with the ACCESS Department at La Crosse to get Katie a single room on the first floor so she doesn't have to use the stairs. Almost all of the dorms are very old and do not have elevators.

We will have to drive to La Crosse monthly to bring her back to Children's for her Vincristine and to get her port flushed. I'll get her on a Thursday so we can go for the appointment on a Friday. Hopefully the weather is ok this winter! 

Overall Katie is feeling better but some days are still a struggle. Steroids are not nice to her and give her stomach and back pain. The Vincristine gives her nerve pain especially in her knees and jaw. There's never a day that she feels “normal”. Something always hurts.

Katie is Katie and she wants to return to LaCrosse! We support her and know it won’t be easy. If she gets a fever, she’s going to have to go into the hospital in La Crosse to access and check her port for infection. She is more susceptible to getting sick but Katie wants to live her life and school is what she wants! She’s been on the sidelines for over a year and it’s been a struggle physically, mentally and socially. Cancer is very isolating and lonely. She misses socializing and can't wait to take classes somewhere other than the couch. Things are looking up but we still have a long, long journey ahead. Katie is determined to not let cancer dictate her life.

Journal entry by Bonnie Manzeck

Well, it's been awhile because Katie is sick of being sick and neither of us really had the energy to update. We are 10 months into this journey and it feels like a lot longer.....

On Friday, Katie will be going in for her last chemo of this cycle (interim Maintenance 2). She's been going in every 10 days for two types of chemo and two spinal taps over the course of this phase. Funny story, during her last spinal tap Katie actually bent the needle when they put it in because she has gained back muscle so I guess that's a good sign that she's getting stronger.  For 3-4 days after getting the two types of chemo, she is nauseous, exhausted and her body aches. After she gets past the initial crap, Katie has been trying to increase her walking. The problem she is facing now that she is walking more is that her knees hurt. If she walks a decent distance at a good speed, her knees start hurting and she starts limping and then we have to ice them. We are hoping to get a scan of her knees before Maintenance starts to see what's the problem.  

Katie should be starting Maintenance mid-September. This means steroids, chemo through her port and chemo pills for ANOTHER 18 MONTHS. Everyone says that Maintenance is so much better and things will get easier but Katie and I have to see it to believe it. We are still hoping she can go back to La Crosse for the spring semester but we have to see how she is moving come November/December and make a decision. 

Katie will start her Biology class at MATC after Labor Day. The class is mostly online with lab at the Oak Creek campus once a week. She is excited to finally be in a science class and use her brain  because she is bored silly at the moment. Katie's resorted to playing Minecraft and watching M*A*S*H. It will be interesting to see how she does stamina wise with a four hour lab. I am going to be working in the morning back at Greenfield High School. I'll be done at lunch so then I can still take Katie to her appointments. September will definitely be an adjustment but we are moving forward each day... slowly.

Journal entry by Bonnie Manzeck

Hey y'all, this is Katie. Sorry for not updating in awhile but it's been busy. Here's an update from my point of view.

June was such a long, horrible month. I experienced so many side effects. Walking was a big challenge because of the steroids and other chemo I've been getting in this phase (Delayed Intensification). Even the name of the phase suggests that it's going to suck. It’s kind of a repeat of the same chemo I received the first month of treatment and that chemo is not easy to deal with. It was really hard to do things outside of staying at home or going to the hospital. All I want to do is go hangout with friends and not have to hang onto someone whenever I walk. My physical therapist suggested getting a walker for around the house. Obviously I wasn't too excited about that cause what teenager wants to use a walker. It did give me some independence but I felt like an old lady not an 18 year old. I used it to get down the step out of my bedroom and  to keep steady when I walked around downstairs. I only really used it for a week because my strength began to slowly come back and I can now move around the house by myself.

The first week of July was plagued with massive headaches. I spent most of the week laying in bed or on the floor. One highlight was seeing my cousins and uncle from Arizona. It was really fun to have kids around the house and take my mind off cancer. They made me gifts and even gave me some baby cacti from Arizona to grow. The worst part about the headaches was that my legs felt great and all I wanted to do was walk around but as soon as I would get up, my head would start pounding. As a non-coffee drinker, the nurses suggested caffeine pills and drinking a lot of fluids. Drinking water has never been a problem for me. The caffeine pills gave some relief but not enough for me to actually be active. I ended up getting blood on Friday the 5th as well as chemo. The blood helped with the headache and I also got some pain meds that I used that weekend. The 5th was the last day of Delayed Intensification. I'm so happy that is done and over with. I had the week of the 14th off and will start Interim Maintenance 2 on the 19th! It's been really nice to have that week off because I've been able to increase my activity and hangout with friends. For the first time, I went out to lunch with Corey Lahr (my best friend and birthday buddy) and my mom didn't come along. That's a huge step and it felt so good to feel normal. Even though I walk slow, Corey was amazing and helped me up the curb. She made me laugh harder than I had in a long time and it was so nice to catch up, especially spilling tea and gossiping. Our friend Ellie is coming to stay the weekend and I'm eager to spend time with her because we don't see her as often as we would like. I'm also excited because I should, emphasis on the should, feel good for my birthday next week. 

My birthday kind of snuck up on me. I don't have big plans because we don't know how I'll be feeling. Honestly all I want is to be able to go to dinner on my birthday with my family. If I can do that, I'll be happy. This will be my first birthday with cancer and my hope is that it's not any different than all my previous ones.

I feel like a lot of people treat me differently or act like I'm fragile and going to break. Just because I have cancer doesn't mean I've changed into this totally new person. Yes, obviously I've changed in some ways but that doesn't mean I'm not Katie. I feel like people are also apprehensive to contact me because they think their disturbing me. Friendship is a two way street and with a lot of people, it's only going one way. Those who contact me need to also understand, I don't always answer right away. I got s*** to do. Everyone is busy and I get that, but the lack of communication from friends has taken a toll on me. It's lonely not having many friends come over. First of all, talking about college with me is ok just don't gloat about how amazing it is. I HAD TO LEAVE THE PLACE THAT I WAS ABSOLUTELY IN LOVE WITH. All I'm saying is that I'm the same, sarcastic, cactus lover Katie. 

To be honest, I really enjoy talking about my cancer journey especially the science aspect. Going through treatment is pretty much a science class. I ask loads of questions and try to connect the cancer stuff to what I've learned in other classes. Friends and family may not think I want to talk about it but how can I not. As a science lover, all the aspects of this journey are fascinating. It's also kind of hard to avoid because it's an everyday struggle and it's affected all aspects of my life. Just ask me about it!! I could talk for days. You may not understand all of it, I sure didn't at the beginning, but it makes me feel better knowing you somewhat understand what I'm going through. 

In the beginning of the year I binge watched That 70s Show. It was hilarious and helped me take my mind off of the crappy stuff. After I finished it my mom recommended MASH. Well now that's my new obsession. Big Brother also started so my mom and I have been watching that. I watched part of Stranger Things season 3 with Quinn and Dad. I loved the 80s clothing and music. Puzzles and reading are also a part of the daily schedule. I've done so many puzzles over the last couple months, it's insane. I also tag along with mom to the store to walk around and get out of the house. I'm trying to stay busy the best I can. 

So I start interim Maintenance 2 on the 19th and that's about 6 weeks long. I should end that phase in September and then start Maintenance! During Maintenance, which goes until 2021, my hair will grow back and won't fall out again! I'll also only have monthly visits to the hospital as well as oral chemo. Maintenance is when you can start getting back into your normal routine. Which I'm very excited about because I'll be able to take a class at MATC. I can't return to UWL in the fall which sucks, a lot. The plan is to go back to UW La Crosse in the Spring of 2020. This fall I will be taking a 5 credit Biology class that has lecture online and I'll only have to go to the Oak Creek campus once a week for lab. Honestly the class couldn't be more perfect. I'm so excited to actually take a science class that will help me get ahead for when I go back. The fall will be the time to strengthen and recuperate before the spring semester. 

It has definitely been a roller coaster with a couple ups and many downs. Mom, Dad, Quinn and I are hoping the worst is behind us and I'll be improving in the coming weeks.

Journal entry by Bonnie Manzeck

The Bike Blessing on Saturday was such a blast and we are so thankful the weather wasn't too bad. First off a HUGE THANK YOU to the Rockin' Rev Team for selecting Katie as the recipient of the 5th Annual Bike Blessing Benefit Ride!!  The team did a spectacular job organizing the event!! Second, a BIG SHOUT OUT to the Lahr, Wunsch, Bellis, Gerum and Wankowski families for volunteering. They braved the raindrops and sold t-shirts and raffle tickets for the benefit. Katie was able to be there most of the day and got to reconnect with her La Crosse friends and see some of her South Milwaukee friends too! The big surprise of the day was that the Mayor of South Milwaukee arrived and presented Katie with a Proclamation that June 1, 2019 would be recognized as Katie Manzeck Day. In addition, two South Milwaukee police officers drove out to Slinger and led the bikers safely through the route. 

Before the Bike Blessing, Katie's temp had been hovering around 100 for a couple days. It was 98 on Saturday for the Bike Blessing so we thought we were in the clear. On Sunday morning, Katie and I went to CHW for a blood draw and found out her numbers were pretty low meaning she couldn't get chemo this week. She was honestly a bit excited cause it would be nice to not feel like crap and actually start to gain strength. Unfortunately, Katie spiked a temp of 101 on Sunday afternoon. I called the charge nurse and she said we needed to come in especially since we already knew her numbers were really low. Before we left, I made sure to pack all our stuff because we were probably going to be admitted. Katie was not very happy about having to go back to CHW, but she knows that the combination of a fever and a low White Blood Cell count can lead to infection and we definitely don't want to mess with that. 

We drove to the ER and went straight back to a room since Katie is a Cancer patient. The biggest struggle with going to the ER is the fact that they can NEVER access Katie's port correctly. She had to be poked 4 times by two different nurses and they still didn't get blood return!! The doctor came in and they said they were going to admit her because Katie's numbers were so low. Her absolute neutrophil count was 33 meaning her immune system was nonexistent and she had no white blood cells. Katie would also get an antibiotics to combat whatever caused the fever. They decided to start a peripheral IV in her arm so they could start the antibiotic while we waited for the TPA (injected in the port to clear up blood clots). We hit another problem when they tried to start an IV. The veins on Katie's right arm are bruised from multiple blood draws and her left arm has really small veins that they can never get into. It took multiple tries to get the IV started but when they finally got it in, they couldn't get any enough blood return! Finally we got the TPA and the nurse decided to just try to get blood return from the port. It freaking worked!!! The nurses just blamed it on Katie's port being sassy. They started the antibiotics and then we waited to be taken upstairs to the HOT unit for our inpatient stay. 

I moved the car and brought up all of our junk on a wheel chair. To say it was an adventure is an understatement. Turns out the doors in the parking structure lock after 9 so I had to buzz for someone to open it for me and then I couldn't get through the door. Katie was brought up to the HOT unit and got settled in. We spent the rest of the night putting our memory foam on the beds and eating ice cream. 

Monday was pretty uneventful. We did have our favorite nurse during the day which helped make the day go a bit faster. Katie got antibiotics and we walked around the hospital to get out of the room. No fevers, no pain, nothing out of the ordinary. During rounds the doctors told us that if the blood culture came back negative and Katie didn't have any fevers, we had a good chance of going home Tuesday. On Tuesday morning, they drew labs and it showed Katie's absolute neutrophil count had increased. The doctors decided that after Katie got her antibiotic in the afternoon, we could go home!! I packed up the majority of our stuff and took a load to the car while Katie finished up. I wheeled her to the car and we were homeward bound. It was a very uneventful stay but I feel better knowing she got some antibiotics and now she can recuperate at home for the rest of the week. 

Next week will hopefully be Nelarabine week where Katie will have to go every day to get chemo. It all depends on whether her numbers come back up enough by Sunday. Fingers crossed!

Katie is currently in the Delayed Intensification period of treatment.  This means that she is getting a lot of the same chemo as she did the first month of treatment.  Unfortunately, it also means that the little bit of hair that had grown back has pretty much fallen out.  I had to get the shaver out today to clean it up and hopefully it will grow back faster this time!! Just another bump in the road....

With each day, Katie is getting stronger. We have setbacks but we are moving in the right direction and that's all that matters. 

Journal entry by Bonnie Manzeck

Special Spaces paid us a visit on May 10th and 11th. They completely redid Katie's room and Quinn even got some new stuff for his room. Katie got all new furniture and they painted the walls and trim and windows. They put us up in a hotel downtown for the night. Katie got chemo that day so we were a little nervous about how she would feel. Thankfully we were able to quick eat at a restaurant in the hotel before Katie started feeling crappy and had to go back to the room. It was nice to have a change of scenery for the night. We returned Saturday early afternoon for the reveal. Katie was hopped up on caffeine and excitement. The Special Spaces team was there to greet us and welcome us home. We were all so shocked by the transformation of Katie's room. They redid her closets, added custom shelves and desk as well as an amazing bed frame with storage. (Honestly the storage under her bed is the best part!) Quinn's room was so different too! They moved stuff around and added cool lamps and design elements that I never would have thought of. Bryan and I were so impressed by the teams and the work they did in both rooms. 

Katie started Delayed Intensification on May 10th aka two months with the infamous steroids, Vincristine, spinal taps and so much more. Steroids make you insane. They make you loopy and emotional. Katie also gets night sweats from them. And these aren't just small sweats, the sheets are all wet and Katie's clothes are drenched. It's the worst. Thankfully she only has to do them one more week and then they won't be back for awhile. 

It's been a rough couple days dealing with the aftermath of steroids. Katie pretty much wakes up sick to her stomach. Her knees have been hurting a lot due to the chemo, but we are trying to push her physical limits each day. She's now walked all the way around Target, Kohls and Pick n Save! We are also trying our best to go to physical therapy every week. Katie also sits on on an exercise ball and watches tv to strengthen her legs and core. Of course we have days where just walking down the hall is a challenge, but we know the only way to get stronger is to push through each day. 

THE BIKE BLESSING!! We are so pumped for this event on June 1st! The Rockin Rev team has put so much work into this and we cannot wait to hangout with old and new friends. We are just hoping that Katie feels good that day and can have a little fun! Send good vibes for great weather😎 

Here is the link to the Facebook page with all the information that you need!

https://www.facebook.com/events/311884226102323/ 

Journal entry by Bonnie Manzeck

Katie completed her 4th and final round of inpatient Methotrexate Sunday, April 28th. Katie was taking awhile to bounce back again. She was focused on gaining strength and finishing up her classes. Overall it had been a pretty uneventful week.....until

Sunday, May 5th, Katie and I were headed up to Slinger for a Yoga fundraiser that the Rockin’ Rev team had organized for Katie. Katie was so excited to be going and was hoping to participate as best as she could. While we were driving she noticed that her left arm was feeling numb. She could still move her arm and fingers but it was difficult. By the time we got there, she was having difficulty moving her left leg also. I called the HOT (hematology, oncology, transplant) unit charge nurse to see if we should come in. They talked to the doctor on call and decided she needed to be seen in the ER.

As we headed to the car, we noticed that Katie's left leg was worse and she needed to be fully supported on both sides to make it into the car. She couldn't put any weight on it and she couldn't use her left arm. Our friend Lynn came along to help and we headed to Children’s which was about 30 minutes away.

As we drove, Katie continued to talk to us. She was hungry so she ate a sandwich we packed on the drive there. We monitored her to see if there was any other symptoms like a droop on the left side of her face, but she continued to be fine. We put some numbing cream on her port so we were ready if they needed to access it.

When we got to Children’s they took us back to a room right away because the HOT Unit had already called down to alert them that we were coming. They do this because most cancer patients are immunocompromised and shouldn’t be sitting out in the waiting room. The room even had a little rubber duck to show the room is squeaky clean!

At this point we were pretty sure she had methotrexate toxicity which usually pops up as symptoms similar to a stroke. They did her vitals and checked the strength in her limbs. Her left side seemed to be getting stronger but was still weak. The ER team double checked with oncology on whether to do a CT or an MRI and they decided to do an MRI because the MRI team had been called in for a different patient and it would provide a better picture of her head and spine. 

They had to access her port do they could put contrast in for the MRI. Unfortunately because the ER staff doesn’t access ports on a regular basis, it took three try’s for them to get in correctly. Before we headed down to the MRI she went to the bathroom and needed to be fully supported to move anywhere. Katie watched the movie Sing during the 45 minute MRI and then we headed back to the ER for the results. Katie was still talking and we didn’t see any signs other than the left side weakness.

The MRI showed that indeed she had methotrexate toxicity in the right side of her brain. It's by the part of the brain that controls motor skills for the left side of her body. There was good blood flow which meant no sign of a stroke! After talking to the on call oncology doctor, they felt comfortable sending her home because she had no additional symptoms other than the left side weakness. They prescribed her to take a high dose of over the counter Delsym twice a day for the next 7 days (It's weird that a cough medicine fixes this) to help clear out the methotrexate. And of course we have to monitor her for any additional issues. 

She was exhausted by the time we got home so she ate and we got her upstairs to her bed where she immediately fell asleep. After waking up she was able to move her left arm and leg and was able to walk down the hallway to the bathroom assisted.

Unfortunately yesterday when she woke up she couldn’t move her left arm or leg! She could feel when I pinched her but she just couldn’t move them. Thankfully our neighbor Kate was home and she was able to help me get Katie out of bed to go to the bathroom. Her arm was just hanging and she couldn’t move her leg. I would help her sit up and as soon as I let go of her she fell over on her left side. Katie and I were so scared. I called Bryan to come home because I wasn’t strong enough to move her myself. We checked in with our Oncology team and they felt it was the methotrexate toxicity and we just need to watch for a bad headache or drooping of the face or any other major changes. After two hours she didn’t improve and they wanted us to come in. Katie did not want to go to the hospital and they couldn't really offer anything else for us. We decided that if she wasn’t better by the next morning we would come in. 

Thankfully by early afternoon she started to move her fingers and arm somewhat as well as pick up her leg from the bed. Grandma brought over a portable bedside toilet that we could use because going down the hallway was just too much for her. Katie has this weird step thing when you come out of her bed room and it’s a lot. As the day progressed she got a little stronger and were very thankful. Katie knew she might start going downhill so when she felt good Bryan and I got her down the hall to the bathroom so she could wash up. 

Bryan took off work today because we weren’t sure if she would wake up having issues again. But thank goodness she didn't and was able to sit up herself. After eating breakfast we were able to get her down the hallway to take a shower. Her strength is definitely not there but she can walk with support from one of us. So fingers crossed that we are past the scary part and she will get stronger every day.  

Katie needs to take the medicine for 7 days and will have to take it again whenever she has a lumbar puncture because they put methotrexate in her spine after they take out fluid. Obviously this is a way smaller amount than the bags of methotrexate they pumped into her over the four times she was inpatient.

We are so thankful for the support that we received from the people attending the Yoga fundraiser. Katie and I were really struggling as we left for the ER, and the Rockin' Rev Team was so kind and understanding and sent us off with good vibes.

Katie also received her Flashes of Hope pictures that were taken in April.  This is an organization that brings different photographers to Children's Hospital to take pictures of cancer patient for no charge.  Wow did they turn out great!

On a good note, Special Spaces arrives this Friday and they will totally transform Katie's bedroom. We have almost everything moved out of her room other than her bed.  Once it is finished we will definitely post pictures!

Thanks again to everyone for their continued support!

Journal entry by Bonnie Manzeck

So Katie made it through round #3 of the Methotrexate 2 weeks ago and she is going in for the final dose tomorrow. Katie is very excited to get this round over with and not have any more scheduled inpatient stays after this. After every stay, Katie took a little bit longer to bounce back. It really effected her legs and her energy level. She was able to get outside and enjoy some of this warm weather. That may not be the case after the snow on Saturday. If the snow isn't too bad, Quinn and Dad are gonna bring Katie and I lunch on Saturday.

We are hoping this weekend will go smoothly, and Katie can keep moving forward.  If Katie's numbers are good after this round of Methotrexate she will moving on to the next phase of her treatment starting May 10th.  She will be getting a lot of the same chemo drugs that she received her first month of treatment which includes steroids which she's not excited about. 

Katie has been a little puzzle obsessed lately. They really help keep her focused and they are a nice way to relax. Last time we were in the hospital Katie did three puzzles! They were smaller ones, about 500 pieces, so it didn't take that long. Since getting home she's done four 1000 piece puzzles! She sits and works on them for hours!!

Katie also has a new favorite show. That 70s Show!! We decided to record some reruns and Katie cannot stop laughing during it.

The online classes Katie is taking are going in to be over soon so Katie has been writing a lot of papers and finishing up projects. She definitely will not miss the boring classes but she's glad she was able to take something. 

We are very excited that Katie will be getting her Special Spaces room soon! Quinn and Dad are on duty helping us clear out her furniture and clean before they come. She cannot wait to see the amazing work they will do.

Journal entry by Bonnie Manzeck

Katie finished the second dose of Methotrexate (two more doses to go) last weekend, and it hit her a bit harder this time. She was pretty nauseous but she was able to clear it out of her system and only have to stay in the hospital for two nights. Dad and Quinn came to visit while we were inpatient and brought us my favorite pizza, Rocky Rococos. Other patients aren't as lucky as Katie and have to stay additional days if the Methotrexate doesn't clear fast enough. As long as her blood numbers are ok next week, she will be going inpatient again on April 12 for her third dose along with a scheduled spinal tap. 

Between the doses of Methotrexate, Katie has been feeling pretty good. She's been trying to increase her leg strength and work on stamina. It's been so nice out so Katie and I have been trying to go outside and walk around a bit. It also helps her mood to get some fresh air.  Katie's online classes are going very well. She's been writing a lot of papers and working on final projects since the classes end in May.

It's still up in the air whether she will be going back to UWL in the fall. Katie will definitely be back in the spring of 2020 though. For Katie to be healthy enough to go back, she needs to be in Maintenance where she would have appointments once a month and some other chemo visits. As of right now, she would be getting to Maintenance mid August but there could be delays along the way. It would suck for Katie to not be able to go back to school in the fall but her health is more important, and Bryan and I want to make sure she is strong enough to be on her own.  

So enough with the bad stuff, let's talk about some awesome things coming up. First, Katie is getting her bedroom redone by the non-profit organization, Special Spaces. Katie gave the team some suggestions on what she likes but the room is going to be a surprise. They will put us (the family) up in a hotel for the night while they work on the room. The whole thing is crazy and we are so blessed that organizations like Special Spaces are helping us through this process. Katie is very excited to see her new room! Another exciting thing is an organization called Wishes And More (kind of like Make A Wish) is giving us a trip to Los Angeles. We haven't figured out when we are going to be able to go (have to get the ok from Katie's doctors) but Quinn, Dad and I are pretty excited. Katie wants to go to Disneyland and do all the fun Hollywood stuff. It should be a really fun trip and again we are so grateful.

And another amazing event is the 5th Annual Bike Blessing which is being held on Saturday, June 1st!!! Here is the Facebook Link and we will have more information as the date gets closer.

https://www.facebook.com/events/311884226102323/?ti=icl

I hope some of you guys understood the reference in the title, Katie thought of it :)

Journal entry by Bonnie Manzeck

Katie's white blood count went up and we were able to go in on Friday, March 15th for surgery to get her Bone Marrow Aspiration and Lumbar Puncture (spinal tap) done. She enjoys the anesthesia nap but Katie gets pretty grumpy when she can't eat the entire morning before. Katie then went straight into the hospital for a 24 hour infusion of high dose Methotrexate. The infusion is two LARGE bags of chemo that looks like Mellow Yellow. They are pumped into her port over a 24 hour period. Then they had to flush her system for 24 hours to get it all out of her system. Katie had so much liquid in her so she had to go to the bathroom pretty much every two hours!!  They kept checking her blood levels to make sure the chemo wasn't effecting her kidneys. By 4:00 pm on Sunday almost all of the chemo had been flushed and she was able to be discharged. Thankfully it was only a two night stay. They had originally said it could be 3-4 nights since it was her first time with this chemo. She tolerated it pretty well so hopefully that will be the story next time. Over the next six weeks, we are going to have to do this three more times. 

We received a call from the hospital yesterday letting us know that Katie's Bone Marrow aspiration results had arrived.Thankfully it was negative meaning there are no cancer cells in her bone marrow. YAY!!!! We still have to go through the protocol but it shows that the chemo is working. Katie and I are happy that we are in a good spot at this point of the treatment. Things could always go sideways so we take things day by day and enjoy the good news when it comes. 

Journal entry by Bonnie Manzeck

On Thursday, November 8th Katie passed out at home and was transported to CHW Emergency Room. She was transferred to a room on the Oncology floor and an ultrasound was done to check her liver and pancreas. Her liver was inflamed due to chemo and was started on medication. She was released on Sunday, November 18th. On Monday she went in for her scheduled clinic/chemo appointment and almost passed out again. She was taken to the day hospital and was given fluids and blood. Based on testing her blood pressure laying, sitting and standing, it was found that her BP dropped drastically when standing causing her lightheadedness. After the fluids, she felt better and her BP became normal when standing and we headed home.  On Tuesday morning she got a severe headache and full body pain. The clinic was called and they felt it best for her to come in due to what previously happened on Monday. She was examined in the day hospital and then moved to the Oncology floor. Her team thought it would be best to do an MRI to rule out any head or brain issues and it was found that her brain is perfectly fine! On Wednesday morning she again had severe head and full body pain. She was given Morphine and another unit of blood. A cardiologist was brought in to evaluate the data and felt there were no apparent heart issues. She is in the hospital for the night to see what tomorrow holds. 
Katie’s Story

Site created on November 14, 2018

Katie started her freshman year at UW La Crosse and was not feeling well at the end of October. She went into the student health center on October 29th and they ran an assortment of blood and heart tests. These tests found that her white blood cell count was highly elevated. The staff at UWL expressed the concern that she may have Leukemia and recommended immediate hospitalization. Bonnie, Bryan and Quinn drove immediately to La Crosse to pick Katie up and bring her back to Froedtert in Milwaukee. While waiting for family, Katie was able to pack her belongings and inform her close friends that she would be leaving.  Once at Froedtert it was conformed that she had some type of Leukemia and measures were taken to bring her white blood cell count down.  She spent the night in ICU and was transferred the next day to Children's Hospital of Wisconsin (CHW) ICU. Treatment was started immediately as well as more tests to confirm the specific type of Leukemia. On November 1st,  2018 Katie was diagnosed with T-Cell Acute Lymphoblastic Leukemia.  She started treatment and Katie was released home on Tuesday, November 6th. She is receiving chemo and many drugs to combat the Leukemia and will be visiting the CHW Oncology Clinic and MACC Fund Day Hospital weekly.

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