August 17, 2016

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Maintenance Day 496: Square One

We spent the morning today collecting poop. I never thought I would say that. In the end, it was collected, tested and found to be negative. I was 99% sure that she had C. diff. Back to square one. Now we just wait and hope that it is the methotrexate that is the cause of the problems.

Frustration fills our day but we do manage to find other topics of conversation. We are cautiously talking about end of treatment plans. Apparently, Scarlett has been thinking about this for some time. When I asked if there was something that she would like to do to celebrate, she started a list: “I want to have a party. With lots of food and drinks. And a banner and balloons and a bouncy house and lots of friends and music and dancing…” She had quite a bit of detail! I then asked if she remembered when she didn’t have cancer. She said no. This poor child has no memory of a time when she wasn’t getting poked and prodded and felt sick and tired all the time. So we are going to find a way to celebrate when that day comes. This princess deserves nothing less!

August 16, 2016

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Maintenance Day 495: When It Rains…

Do you ever have those days where you just want to go back to bed and cover your head and pretend it didn’t happen? That’s what today was. Except really, it’s just another day in our house.

Background: Scarlett gets a medication called methotrexate (MTX). She gets it once a week on Tuesday night after dinner. It is common for her to wake up on Thursday morning and throw up. We finally connected the two events several months ago. We try to premedicate her with Zofran (for nausea) Wednesday night. Sometimes that works. Scarlett had been due for a dose increase of her MTX for a while and this was the month that Dr. B decided to give it a try. So her dose increased from 0.5 mL to 0.7 mL. We gave her the new dose on Tuesday, August 2.

By Wednesday morning, Scarlett was complaining of a belly ache. We started giving her Zofran right away and continued nearly around the clock. It didn’t go away. She threw up a couple times over the past two weeks. But it doesn’t seem to be nausea causing the “belly ache”.

We tried to supplement her diet with a Pediasure shake at night thinking she was hungry and it was hunger pain causing the belly ache. The food didn’t help.

We questioned whether she was constipated. Scarlett, being the self-sufficient and independent little lady that she is, goes potty by herself. She doesn’t tell us and we don’t ask. So last Thursday I gave her a dose of Miralax. And the floodgates opened! She started having diarrhea after that. All weekend. It got to the point last night that we knew we had to bring her in.

She was in a really good mood. We took her weight and went in the treatment room. That’s when she got the bad news: she was going to get accessed. She needed labs to check her liver panel, her Hgb, ANC, white count, potassium and sodium…She also got a strep test. Since Tate and Evangeline had strep last month, they questioned whether Scarlett had an undiagnosed case. In preschoolers, strep can manifest as abdominal pain instead of throat pain.

Her labs all came back great. White count was high but not unexpected for either a post- steroid level or an infection. Her liver panel came back improved over last month. Her rapid strep came back negative. Unfortunately, her weight went down from 16.3 kg to 14.7 kg which is about 4.5 pounds. That’s a lot of weight for a little one to lose in two weeks. She got some fluids and made a craft while we waited.

We ruled out strep. That leaves two possible options: a bad reaction to the dose increase of MTX or an intestinal infection. For the time being, we will decrease her MTX back to 0.5 mL and see if that helps. In the meantime, we need to spend the night working on getting a stool sample. Yuck. She will be tested for C. diff, rotavirus, and giardia. Hopefully we will have an answer.

We also discussed her feet again. They are now so dry that they have cracked open. Deep and painful cracks that make her cry when she walks. We will now try a very moisturizing ointment until the cracks heal. Which will probably make her infection worse.

When Brock got home, Tate was waiting for him with a 102 fever. Oh yeah, and last Friday, Brock got rear ended in the van. And my mom has shingles. And was with Scarlett before she knew. I swear, the luck doesn’t stop. Maybe we will win the lottery tonight.

In the meantime, we worry. We worry about the stomach pain being cancer. We worry about her leg pain being cancer. We worry that her white cell count is cancer. We worry, worry, worry. It never ends. We never get a day off. Brock and I haven’t slept in four years. I’m not sure we ever will at this point. Every day seems to crap on us a little more. Only this time, we are dealing with literal crap.

July 25, 2016

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Maintenance Day 473: The Sickies

This summer, our sister-in-law and our niece and nephews are coming for two months! We are so excited to see them for the first time since August. So much has changed. Our youngest nephew has learned to walk and talk, we missed three of their birthdays and they missed three of ours. Scarlett has grown and thrived. So we invited our sister-in-law to come to Scarlett’s appointment. She has never met the doctors or seen the hospital. It was a special day for her to spend with just Scarlett.

We spent a lot of time with Child Life talking about fundraisers and events coming up. We talked about the best way to make families aware of the new Facebook page we started. We talked about the opportunities that being a new Children’s Hospital would bring. Then we talked to Dr. B about Scarlett’s need for physical therapy. Scarlett’s labs came back looking well enough to increase her doses back to 100%. Almost exactly one year after cutting them to 50%, we are back at full dose. Her ANC was a little troubling because it was TOO high. Her new dose should take care of that. All looked well!

As soon as we got home, Auntie M called. She and her kids had been exposed to hand/foot/mouth. That meant that Scarlett now had as well. The first symptom is a fever. So I began to plan for the week ahead. I don’t want there to be a last minute situation of who is going to take care of the kids if I can’t leave work, Brock has to take Scarlett and then Tate and Evie are stranded. Unfortunately, all of our family had been over to visit the cousins already so everyone was exposed. The situation got even more complicated when Tate was diagnosed with strep throat the next day.

Having an immunocompromised child is not easy. It’s not just saying “they might get sick”. A fever is big deal. Even if you are certain that you know the cause, you still have to go through the tests to be absolutely sure you know what the answer is. The port in her chest provides easier access when giving medications but it is also highly dangerous. The port has a tube that leads directly to Scarlett’s heart. An infection in there would very quickly and completely bring all of that bacteria straight to her heart. A fever is the first sign of infection. A simple dose of Tylenol for most kids is not allowed in cancer kids. It can mess with her labs and, as bad as that fever is, it tells us that she is sick. We want that fever to be a bright flashing light. A fever over 100* means that we have to immediately call her doctor and she has to be to the hospital within one hour. Since we have a 45 minute drive, we have 15 minutes to pack some clothes and get in the car. Knowing who is around our neighborhood every day is a necessity, in case we need to leave that quickly. In addition to all of that, a fever means an automatic 48 hour hospital stay. She cannot be discharged until her fever has been gone for 48 hours. It is a lot of work to plan who will care for everyone, where they will go, how they will get to school (if needed)…

It’s not possible to avoid infection completely. We cannot live cooped up in our house every day for another six months. Even if we did, you still can’t prevent everything. But we try to plan as much as we can. Every cough is assessed regularly, every headache is asked about until we get one of our own, every cut is checked, every visit to friends/family is preceded by “is anyone sick?” It’s a nerve wracking way to live life. It’s difficult for people on the outside to understand how much work, anxiety and stress goes into a hospital stay.

We were lucky this month. Scarlett had a blister on her hand one day and I started looking for babysitters. As my sister said “Scarlett’s not the type of kid to get a blister from working too hard”. It went away with no other symptoms. Scarlett was the only one of our kids to not get strep. Her doctor has told us that it’s a common thing to see siblings pass something around and the chemo kiddo gets passed up. We will take that!

It has been 12 months since Scarlett has been admitted. She has changed a lot since then. She knows now that it’s not normal to be staying in the hospital. She doesn’t want to go to her appointments anymore. She has started asking more questions about her port. I don’t know what a hospital stay would be like now. Would she still cooperate? Would she cry? Would she sleep through all the beeping, buzzing, poking, prodding? I hope that we don’t have to find out.

June 10, 2016

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Maintenance Day 428: Growing Up

This months seems to be reminding me that my little babies are all growing too fast. Tate finished kindergarten. Evangeline grows more independent every day. And Scarlett seems to be understanding and fighting her diagnosis every day.

Scarlett’s latest appointment was this past Thursday. It was another lumbar puncture appointment. In months past, we have dreaded these mornings simply for the fact that she cannot eat. We decided the past few times to prepare her the night before. She typically cries and protests and tells us what she wishes she could eat. This whole process is pure torture for our breakfast girl. This month, I told her before bed that she couldn’t eat in the morning. She simply said “ok. Can I pack a snack?” That went a lot easier than I expected! Even the next morning, she asked if we could snuggle while Tate and Evangeline ate breakfast. She picked out some snacks and packed her backpack.

Scarlett had been having problems with her port recently. In April, when we needed blood for a culture, we couldn’t get a blood return. Last month seemed fine. This month, her port was clotted. She had to have a dose of alteplase (TPA) which is like a really strong clot buster. She has had it once before when her PICC clotted but this is the first time with her port. Dr. H told Brock that, as we reach the life expectancy of her port, this becomes common. If I remember correctly, a port is typically replaced after about two years. Scarlett’s will be two years old in September. Ports come in different sizes and kids grow quickly. That port has done a lot of work in these past two years!

When it came time for the lumbar puncture, she seemed to have a harder time. She is getting bigger and seems to be more aware of what is going on. Or she’s just requiring more medication now. After she was given the Versed and morphine, the doctor began the procedure. Scarlett started crying because she could feel the needle. She was given a little more morphine and did fine for the rest of the procedure. She recovered fine and was soon eating her snack. Another day done!

I have noticed the past few months that as I give Scarlett her oral meds at night, she is fighting me more and more. What used to be an easy process – stick the syringe in her mouth, shoot slowly and she’d swallow without waking up and barely moving – has become more difficult. She now literally fight me sometimes. I have to hold her arms to prevent being slapped and she wakes up, giving me a dirty look.

Scarlett has also been diagnosing her dolls and stuffed animals with cancer. She informed me this week that her kitty had an appointment and Kitty was scared. She was “getting her flu shot and she has cancer too”. She puts a little emphasis on the cancer – stretching out the A to show that’s it’s really important. I’m not sure what the reasoning behind this development is. Does she understand that not everyone has cancer? Is she looking for a partner to share her cancer with? Or is it simply a phrase that she knows too well?

The following day we were asked to contribute to a news story being done about Cole’s Cancer Crusade. The Stoffel family has done so much for us that we wouldn’t have missed out on an opportunity to help them! We were a little (a lot!) nervous about Scarlett’s mood that day. Her reaction to the steroids has been varying greatly the past few months. Last month, she slept for most of the day after her appointment. The month before, she was so crabby! We really lucked out with a happy, adorable little one this month! Any chance to see Cole, she was excited about! She was a little shy at first but quickly warmed up to Alexa. Before long, she was running around the gym, chasing Nathan, and racing with all the kids. She was very excited to wake up the next morning and see herself on TV!

Later this month, Evangeline and Scarlett will celebrate their fourth birthday. They have been busy helping me plan their birthday party and giving me direction on what they want to wear, what color cake they want, who should be invited…I think my party planning days are over. I’m not prepared for them to grow another year older but I am so grateful that they both are. We are thankful for every day!

May 27, 2016

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Maintenance Day 414: Unless…

“Unless someone like you
Cares a whole awful lot,
Nothing is going to get better.
It’s not.” – The Lorax

We were invited by our friends Julie Stoffel and Nathan Stoffel to visit Woodland Elementary today. Their son Cole Stoffel would be giving a speech inviting students to his children’s run, Cole’s Cancer Crusade. We had no idea what we were in for.

Woodland Elementary is about a mile from our house. From what I saw today (and I may be wrong), they have a day every year dedicated to cancer. When we walked into the gym we were amazed at how many students were there. They were all wearing t-shirts that said “unless…”. The first thing they did was invite several teachers in front of the school to shave their heads! Both men and women sacrificed their hair to show solidarity. One girl cut her hair to donate. She explained to the school that she did it for her brother, who is a cancer survivor. (The tears started!)

Next, Cole, who is in sixth grade, spoke about Cole’s Cancer Crusade. Cole lost his second grade teacher to cancer. It inspired him to do something. He began running 5Ks with his parents. He chose a child to run for for each race. But it wasn’t enough for him. He progressed last summer to running half marathons. It still wasn’t enough. This year he participated in a 50K. After each race, he wanted to do more. So he decided to start his own race – strictly for kids. There will be obstacle courses to represent the obstacles that kids with cancer overcome. He would like to introduce Snowdrop kids to the runners as inspiration. And he is organizing all of this himself! I cannot tell you how proud we are of him! (More information can be found on Facebook Cole’s Cancer Crusade)

Cole introduced Scarlett as well. She was a little shy at first but she warmed up to the attention and held Cole’s hand as they shook the teachers hand and received a standing ovation!

After this, a video was shown of how the children raised money for this event. Some had lemonade stands. Some had bake sales. Some had car washes or raked leaves. It was amazing to see how so many kids came together throughout a whole school year for a cause that was bigger than themselves.

We then went to Richmond Elementary. The principal there was very eager to encourage kids to get signed up for the run. He promised 1000 runners! (And Cole’s eyes got really big!). He then introduced Cole to a little boy who has brain cancer. It was another reminder that cancer is closer than you think. Every school we went to had a child fighter.

We have been so blessed. These past twenty-one months have been the most difficult yet rewarding of our lives. The people around us make us want to be better people. If you are looking for a way to help, please considering signing little ones up for Cole’s Cancer Crusade or donate to the Snowdrop Beard Crop. All of this money goes to research, awareness, and scholarships. We are SO close to a cure. And I know that the people around us care a whole awful lot, so things will get better!

May 17, 2016

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Maintenance Day 404: Travel and Injury

We have been very blessed since Scarlett began maintenance to have had the opportunity to do a little traveling. Florida, Chicago, Wisconsin Dells, Minnesota, and now Alabama. Traveling with Scarlett makes things just a little more complicated.

Before we could leave, we had to improve her foot situation. While her infection itself will not go away, she could not go to the beach with open sores. We worked really hard to slather her feet in moisturizing creams, ointments, everything we could think of. The winning formula was suggested by my wound care nurse at work. (I don’t know why I didn’t think to ask her initially – she is the expert!) For the two weeks before we left, we used miconazole powder and Aquaphor in the morning and miconazole powder and Calmoseptine at night. The Calmoseptine is a barrier cream which contains a little menthol. It holds moisture in, cools her feet, takes away a little pain, and is a pretty pink color for our princess! By the time of her appointment, Scarlett had no open sores and was cleared for the beach!

Scarlett’s appointment was on Thursday, May 5. It was a pretty boring appointment. Lab work, vincristine, a physical. Her labs all looked great (ANC 1200, Hgb 12). The final preparation for our trip was her paperwork. Part of planning our trips is finding every Children’s Hospital and pediatric oncology unit along the way and closest to our final destination. We are sent with a summary of her treatment plan, her last appointment, and orders for admission just in case.

Packing for travel is nerve racking. It’s not like you can walk into any pharmacy and get her medications if something is left behind. And it’s not like you can pack it a couple days ahead of time since most meds are given every day. That makes for a stressful last minute rush. Her current med list is pretty short but still requires an entire bag just for that. For this trip, Scarlett was assigned the Mickey bag. And yes, it’s pretty much full.

We left the following day after school. Since Scarlett had started her prednisone the night before, we weren’t sure how driving for 18 hours would mix with her “roid rage”. This month, Scarlett was very quiet on her prednisone. She didn’t talk much for the next three days or throw any fits. She slept a lot.

We have really been trying to observe Scarlett. Every time she plays, it gives us an opportunity to really watch her and study her. We pay attention to her gait and posture. We watch her walk, run, jump, sit. Brock talks to Dr. B for a long time at every appointment about all of this. We worry about her physical development because of the evil Vincristine. Vincristine causes neuropathy and weakness. We have seen this developing over the past six months. It is something that is becoming more and more worrisome and important to address. Good thing Daddy works in PT.

On Thursday, Scarlett fell. We were just walking to the car and I said to her “wow, Scarlett! You’re walking so great!” And before the words came out of my mouth, her leg collapsed and she went down. We did a lot of evaluating and stretching and massaging. She most likely has a mild ankle sprain. She was very adamant that she couldn’t walk. For the next four days.

Throughout her treatment, we have been very grateful for Scarlett’s stubbornness and tenacity. Those have been important traits to get her through the difficult times. But during the “down” times, those features drive a parent crazy! After four days of not walking, we asked Scarlett if she wanted to skip gymnastics. “No I’m going”. She fully committed to the fact that she was completely unable to walk. When she was instructed to run, she ran…on her knees. When she was told to hop, she hopped…on her knees. So we pulled her from the class. When they started to do the fun stuff, she decided to go back to class. She dramatically limped across the gym to rejoin her class and very dramatically did the activities. Then came time to do the trampoline. And guess what! She jumped down the length of the trampoline! Then she got off and limped back to the line. Her leg improved again when she had to walk up the podium to accept her award too. Oh my goodness! We are in trouble! She is an A+ actress when she wants to be! We have no doubt that she did hurt her ankle and that it probably does hurt. But she is also very good at exaggeration and manipulation and that makes it extremely difficult to determine what is real and what is convenient for her. These are the challenges of having a very intelligent and stubborn child!

April 7, 2016

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Maintenance Day 364: A Day at the Clinic

Today was a very busy and comprehensive appointment. We began with getting accessed and labs drawn. Since we left the house early to visit some family, we forgot her pre-meds. So Miss Scarlett chose to just do the poke without the numbing cream. We waited a while for the doctor, who was busy with an admit which gave us time to play.

We discussed Scarlett’s feet today. Dr. B looked at them and said he is confident that she is suffering from a tinea infection. Due to her immunodeficiency (and because of it), she will likely have this infection until she is done with treatment and for a couple months afterwards. We discontinued the fluconazole because it started to cause some liver damage and because it interacts with her vincristine. If it’s not really working anyways, there is no sense in taking the risk. We will just have to try to find things that ease her discomfort and itching.

We have also been monitoring her legs. Vincristine can cause neuropathy and weakness and when given with fluconazole, it can make it worse. We have noticed that she doesn’t extend her right leg completely when walking and has less strength on her right side. It is quite apparent when doing stairs and gymnastics. During her bear crawl last week, I noticed that she would only step forward with her left leg. She also is very terrified of picking up her feet when walking on the balance beam which makes us think that she does have some neuropathy in her feet. Luckily, we have family and friend in the pediatric physical therapy world and are getting great tips (for free!). If it gets worse we may consider formal PT but for now it’s a watch and see thing.

Upon review of her labs, Dr. B commented on her white blood cell count being high. Has she been sick? No. Has anyone around her been sick? No. He has seen many times in the past where a patient has similar labs and they get a fever in the next 48 hours. Great, since tomorrow is Tate’s birthday.

As we continued her physical exam, Dr. B looked in her ears and noticed an infection in at least one ear. The best course of action was to do a blood culture and immediately start IV antibiotics in the hopes of catching it before it gets really bad. We wanted to get a jump start on checking for a port infection so they wanted a blood culture right away. They need to draw about 3 mL from her port for the culture. Scarlett’s port chose today to be uncooperative. No matter how hard they tried (different positions, coughing, arms up, lying down, looking up…) they couldn’t get even 1 mL. That is 20 drops. Her port just wouldn’t give it up today. We never got the blood culture and instead tortured our baby for 30 minutes trying. She got her Zofran, vincristine and IV antibiotic and another oral antibiotic to continue at home.

By the time we left our one hour appointment, it was 4 1/2 hours later and Scarlett and I had both cried. Please say a little prayer that Scarlett stays fever free for at least the next 72 hours so that we can give Tate the happiest birthday that he so deserves.

Also, if you noticed, today is day 364 of maintenance. Tomorrow marks one year in this phase of treatment. A year since her hair started growing back. A year since she started growing again. A year since our lives got “easier”. So much has happened in those 364 days – not one of them “normal”, “easy” or “safe”. But we have developed a new normal – comfortable in the routine but always on the edge of our seats. Congratulations, Scarlett, on another milestone!

March 21, 2016

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Maintenance Day 347: Medication

We have been blessed from day one with a child that doesn’t mind taking medications. Perhaps it is her mother’s background coming out in her. We never had to force her to take them. She may protest and say it’s yucky but she always drinks it all up and sometimes even licks the spoon clean. We taught her at 2 1/2 years old how to swallow small tablets but she prefers the liquid forms better. This is a peek into our medicine cabinet this month:

*Purixan (6-MP): 2.3 mL every night (must be given 2 hours after a meal so we give this at 9:30 every night while she is sleeping) *prednisone: 12.5 mg twice daily for five days after IV chemo
*famotidine: 1/2 of chewable tablet twice daily during and one week after prednisone. Once daily all other days to protect her stomach *methotrexate: 0.5 mL once weekly, only on weeks in which she doesn’t have an LP *Bactrim: 12 mL every Saturday and Sunday
*fluconazole: 2.5 mL once weekly for her foot infection
*clotrimazole cream: apply to feet twice daily (since we have trying everything for this infection this combination may vary daily but we are throwing everything at it) *miconazole spray: apply to feet twice daily
*various essential oils: soak/apply to feet daily
*solarcaine spray: apply at bedtime as needed for itching
*Selsun Blue: wash feet three times per week
*ondansetron: 2.5 mL every 4 hours day of chemo and at least twice daily for 3 days post chemo and as needed other days *hydroxyzine: as needed for nausea, itching, sleep
*Miralax: 8.5 grams up to twice daily as needed for constipation
*morphine: as needed for pain (since she can’t have ibuprofen or Tylenol, the morphine is for all pain)
*Biotene mouth rinse: should be done up to four times per day to prevent mouth sores. Scarlett hates this so I will admit that this one gets skipped most days
*Emla cream (lidocaine/prilocaine): to be applied to port site 30 minutes prior to appointment *IV vincristine: every 28 days
*Intrathecal (spinal) vincristine, methotrexate and ARA-C: up to every 28 days through lumbar puncture *IV hydration: before every infusion
*IV Versed: light sedation before every LP

I think that’s it, but I could be missing something that’s been in the back of our cupboard for a while…or something obvious. I have about 10 different alarms set on my phone to be sure that we remember everything. If we had 10 medications to give at the same time every day it would be so much easier. But Scarlett does such a great job that we have absolutely no reason to complain. This combination of medications is not only allowing her to survive comfortably but she is thriving! before diagnosis, Scarlett was an inch taller than Evangeline. Since she had been in maintenance, she has gone from being 1/2 inch shorter than Evie to being 1/2 inch taller! She has gained 11 pounds and is now one pound heavier than Evie. Evie can now go back to being called our little Pippy (Pipsqueak).

We are so grateful to live in a time in which we have all of these wonderful medications to save our children. I am blessed to have an extensive understanding of each of these medications and what I can suggest/give for ailments that arise.

But this list should be so much shorter. ALL has been treated with the same medications for over thirty years. There have been just a handful of new medications approved for pediatric cancer in the last twenty years. You cannot simply take an adult chemo agent and give a smaller dose to a child. Children have different cancers, different bodies, different processes for metabolizing medications, different reactions. And the long term effects are so much more important in children because they have so much more of their lives left to live. You have probably seen me talking about “we deserve more than 4”. Only four percent of funding goes to researching and finding a cure for childhood cancers. There are so many promising treatments on the horizon. Two new medications for neuroblastoma. A new treatment option for leukemia that may CURE it in just a very short time. With all of these breakthroughs with just four percent of funding, how much more progress would be made with 10% or 25%? There is currently a bill being introduced in Congress called the STAR act. This bill aims “to maximize discovery, and accelerate development and availability, of promising childhood cancer treatments”. It currently has 177 co-sponsors in the House. It’s prognosis when written? A 5% chance of passing. We need more. (End of political rant 😊)

March 16, 2016

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Maintenance Day 342: Rough Road

It’s been two months since I’ve given an update on Scarlett and our family. I often think about doing it, I’ve started many posts, written a lot of words, but haven’t shared anything.

Scarlett has been doing extraordinarily well. She is happy and energetic. She laughs and plays all day. She is a princess, for sure – good and bad. The past two months have seen medication increases due to her growth and treatment response. Her counts have been nearly perfect. Her feet seem to be improving slightly. She still complains about the itching, but hasn’t slept with an ice pack in some time. That improvement is likely due to an oral anti-fungal that she has been taking. Unfortunately, it may be causing some liver damage which we will be monitoring every two weeks.

Scarlett is enjoying gymnastics very much. She is looking forward to starting a dance class soon. Scarlett is very brave in most regards – when we tell her to be. We are finding that she lacks confidence in other situations. Gymnastics, for example, is really testing her. She gets in her mind that she can’t do something and easily gives up. A few weeks ago, she was encouraged to walk across a balance beam that was placed over a foam pit. She stood at one end and said “I can’t! I can’t!” It took a lot of encouragement, a couple falls, and mom walking backwards in front of her for her to do it but gosh darn it! I wasn’t letting her give up. She is the bravest little girl I know and I’m not going to watch that disappear now. I will spend every day reminding her of how brave and wonderful she is.

I, on the other hand, am struggling to deal with my emotions. I think back to last year, when Scarlett was in the midst of her frequent and violent temper tantrums. If I were three, I think I would be right there with her. Over the past ten months, as life has calmed down a little bit, appointments have become less frequent and it has allowed us more time to finally think, process and try to comprehend this situation. I have been having panic attacks, flashbacks and moments of anger. Why us? Why our daughter? We have been through enough already! Just give us a damn break!

In February of 2015, I wrote an update about how much has changed in the six months since Scarlett was diagnosed. One year later, as I read that, I wondered what happened to that strong person that I once was. As another year has passed, I again find myself to be a different person. One that I don’t like quite so much.

I’m sure that many cancer parents suffer from depression. I will admit that there have been points in my life that I have. I know what the worst feels like. Which allows me to know that I am not depressed today. Instead I suffer from anger, frustration, sadness and a loss of hope. But I’m still happy.

I’m happy that all three of my children are thriving. Tate is starting to finally enjoy school. He is learning to read. I love lying in bed with him at night and listening to him read to me. I love reading to him. He is still that same sweet gentle soul. Evangeline is so snugly one minute and then making me laugh the next. She has the best sense of humor but really knows when I need a hug. Scarlett is her little diva self. Always wearing a skirt, always wanting a pretty in her hair, always making sure she looks her best.

Many people, while listening to me express my frustration, will say “but at least you have Scarlett”. While that is definitely true, and we are so happy to have every day with our brave girl, it seems to diminish the other feelings that we have. It makes me feel guilty and selfish for feeling anything but grateful. Like we don’t deserve to feel anything but happiness.

The maintenance phase of treatment is so much less hectic than any other phase. In the best case, we go in once a month for treatment, do five days of steroids and the rest of the time is “normal”. It’s great! But all that down time really allows you to think.

I have found that the memories of Scarlett’s diagnosis have not faded one bit. While talking to my sister one night, a memory hit me hard – just a partial picture seared into my mind. Scarlett wasn’t even part of it. Just a chair. I hadn’t thought of that chair in probably close to the year and a half since I was there but there it was, clear as day. It caught my breath and made my stomach turn. Amazing how one little chair can scare me into a panic. I questioned one year ago whether those memories would ever fade and I can definitively say that, one year later, they are probably worse. I have more time to remember them now.

The panic attacks are coming more frequently. Every time I hear of a new diagnosis, it brings me back to Scarlett’s. There are moments that I remember like a movie in my head. I can close my eyes and see them playing over and over, sometimes with no sound, sometimes just a few seconds. And there are moments that I can’t remember at all. Part of me hates them. They make me sweat, heart pound, catch my breath and make me stop to hold something. Part of me doesn’t want them to end. They are moments that, for some reason, I don’t want to forget.

One year ago yesterday, we found three dark red sores in Scarlett’s mouth. We were so casual and flippant about them. “We will just ask at her appointment in a couple days”. A couple days later, doctors were rushing her to PICU and talking about removing parts of her tongue, if she survived. I would say that, including the day of her diagnosis, these next two weeks are an every day reminder of the worst days of her illness. Those were the days that we were most afraid and the closest to losing her. I can only imagine what memories will emerge in the next two weeks.

I have started therapy now. Unfortunately, finding a therapist that has dealt with a childhood cancer parent in this area is impossible. I’m hoping that as I get more comfortable talking to someone about my feelings, I won’t “forget” these moments but just learn to respond to them differently.

After a year and half of being a cancer family we find ourselves on both ends of a spectrum. Most of the time we are joyous and ecstatic that we have a healthy Scarlett. We are grateful to be where we are and hopeful that this positive route will continue. 99% of our days are happy and laughing and busy. But during that small 1% we are angry and disappointed. Why us? Why is this storm cloud of crap raining down on us all the time? What are we doing wrong? We try to do the “right” thing and never seem to be rewarded. It’s a difficult position to be in – never wanting to complain so as not to sound ungrateful but allowing ourselves to be honest and open with our feelings. We can’t control how we feel. I certainly hope that someone will help me process my thoughts and feelings. Some day, I may need to do the same for Scarlett.

It’s a lonely road to travel. One that few people truly understand. We have our family and friends that are always willing to listen but, when we express our true emotions, there is nothing to be said. We understand. We don’t know what to say either. All we ask is that you allow us to be honest and open. If we share our anger or disappointment, don’t judge. We are more than aware of our blessings. We just have an acute awareness of our struggles at this time. Hopefully this anger will pass. Hopefully we can come to a point in which we can see that there is a light of blessing in our shadow of suffering. Hopefully our 1% of darkness every day will grow less and less. We hope and pray for that every day.

January 31, 2016

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Maintenance Day 297: Love

“Love is patient, love is kind…It always protects, always trusts, always hopes, always endures.”

This weeks gospel reading was one of my favorites. It was one of the readings at our wedding. I’m sure at that time, it meant something completely different than it does now. As we approach the end of our 17th year together (holy wow!), I am truly more in love with my husband than I ever have been.

Love is patient. Although he may disagree with this, I have always admired Brock’s patience with me. We used to lie in bed at night and I would plan out every year of our lives. Our goals (probably more my goals), our dreams (if we were together, they were ours right?), point by point lists of how they would transpire. If he proposed tomorrow, we could get married in a year and half and then get a job, buy a house, and then have kids…and he patiently listened and went along with the plan. Now, patience is a two way street. I am patient with his idiosyncrasies. He is patient with my neuroses. We try to have patience with our children. But through it all, we know that in order to survive and thrive, patience is a necessity. It allows us to stop and listen. To really hear what the other is saying. When it’s been so difficult to find the words to say, we have the patience to wait until we can express our pain, our fears, and our hopes.

It always protects. I’m not a damsel in distress. I don’t want to be protected. I think I can pretty much take care of myself. But I know that none of that matters. Whether I need it or whether I want it are two different things. Brock can sense when I need a hug. He knows when I need a break. I don’t have to ask. He protects me from myself. He carries much of my stress with him. I hope that I do the same for him.

Always hopes. After all these years, we still have hopes and dreams. We may have taken the long road and a few detours along the way but we still want the same things. We still want the perfect life that we always imagined. We often talk about the hopes that we had on our wedding day. Most of them have come true. We have a beautiful home. We have good jobs. We have a wonderful family. And we have each other. None of my dreams would have come true without him.

Always endures. I can only hope that this part is true. We have been through more than most other couples in the past seventeen years. We spent six months of our first three years together in the same town. We struggled through infertility. We survived twins. We are navigating childhood cancer. If we can manage to love each other more after all of that, our love can only grow through the rest of our lives. I look forward to “easy” days, straight roads and boring nights. I look forward to loving this man forever.