October 2, 2016


Maintenance Day 541: 62 Days

Scarlett’s labs this morning were a mix of good and bad. Her Hgb went down so she is currently having a blood transfusion. Her platelets went down as well but we wait on that. Her IgG responded perfectly to the IVIG yesterday. We will repeat that again tomorrow to get it even higher. Her white count increased as well so her ANC is up to 400. Her body is making exactly the right kinds of cells to show improvement!

Her organs are still angry. Her pancreas is extra mad and letting us know with really high enzyme levels. We are trying to give her GI system a break so she will get 75% of her nutritional needs from the TPN. She will be NPO (nothing by mouth) until we see some improvement. Pretty much as soon as Dr. B said NPO, Scarlett began asking what she could have for dinner. She hasn’t stopped asking since last night. “Mommy, I’m hungry.” “When can I eat?” “But I’m hungry, Mama!” It’s difficult for Brock and I to eat when we don’t want to eat in front of her. We thought a dairy free diet was hard but this is excruciating.

Scarlett gets her nitazoxanide twice daily. She gets it crushed in a med cup and then mixed with about a teaspoonful of yogurt. We scoop every last crumb of that medicine out, then lick the spoon clean, then she can have a couple more spoonfuls of yogurt. That is her food for the day. She gets it every 12 hours and asked for it for about 11 1/2 hours before her next dose was due. As we increase her TPN, it should help satisfy her hunger.

In order to help Scarlett’s counts recover to fight this infection, we have stopped her chemo. We need for her to have the cells that the chemo kills to get rid of this infection. When we feel like she is improving significantly, we can restart her chemo. We will start at 25% of her dose and increase as we can. She will still have the same end date. Hopefully, we have done a good enough job the past 26 months to be good without some doses of chemo. We don’t really have a choice right now.

We began to talk about the things that were required for discharge. She must have an upward trending ANC, less abdominal pain, less stooling, pretty much a general sense of improvement. When she is discharged, we will have to obtain her medication from an outpatient pharmacy. If she continues to show improvement with it, we will continue for two weeks and test again. If her stool still contains cryptosporidium, we will treat for another two weeks and test again. So, 28 days x 2 doses per day x $100 per dose = a lot of money. We will call our prescription insurance tomorrow to see if it will be covered. Anything further than 28 days hasn’t been studied. From what I have read, it may take months to get rid of it. When we get home (or when my mom gets home), we need to begin washing everything. Everything that may have come into contact with her stool (clothes, sheets) must be washed in hot water and dried twice. The only thing that kills cryptosporidium is extreme heat and extreme cold. So I guess we need to light our house on fire.

Scarlett woke up in a great mood this morning. She sat on my lap in the chair and we laughed and joked with each other. As the day went on, and she realized she couldn’t eat, she got very hangry. She cried a lot. She didn’t want to share. She wouldn’t smile. As soon as her blood transfusion was finished, she perked right up. She played, laughed, smiled. She was our regular Scarlett. I hope that this continues. It certainly makes us feel better.

We had a lot of visitors today. It helped pass the time and was really nice to see Tate and Evangeline. We have realized that Scarlett has no memory of staying here before. She hasn’t stayed since July 2015. Luckily, when we walked in, our favorite nurse was on for the weekend. It was so nice to have someone that we know and love get us through this difficult time. We never imagined to be back here again. We are 62 days from the end of treatment. We thought “we will deal with her foot problems until she’s done with treatment because it’s only two more months and then it will get better”. We thought “we will deal with her dying port because it’s only two more months and then it will get better”. We never thought we would be two months from the end and dealing with a life threatening infection. We don’t want to think “we will have to deal with this infection for the next two months before she has a chance to really fight it and get better”. 62 more days. 62 more days. 62 more days.

October 1, 2016


Maintenance Day 540: Crap Upon Crap Upon Crap

The results of Scarlett’s tests are back. Brock and I feel entirely defeated and frustrated.

Scarlett’s stool cultures came back for cryptosporidium. This a parasite that is well known in Wisconsin because the largest case ever was in Milwaukee. My immediate thought was about boiling water and testing our water and where has she been…

First, Scarlett’s lab results: her white count is down, her hemoglobin is down, her platelets are down, her IgG is down, her weight is down. Pretty much everything she needs to fight an infection is down. We have stopped her chemo in order to get her counts to recover to try to fight the infection.

Second, her ultrasound, X-ray and labs: the crypto has taken over her gut. She has colitis (swollen intestines), pancreatitis (swollen pancreas), cholecystitis (swollen gallbladder), and hepatitis (swollen liver). Her body is angry. Her gallbladder is angry, full of sludge and air. She will be NPO (nothing by mouth) to give her gut a rest. She will get her nutritional needs from her IV. We are trying to explain that to her right now but she is spending her afternoon trying to figure out what she wants to eat.

Third, she developed a fever last night. While Scarlett typically sleeps warm, we took extra care and started an antibiotic. This will hopefully help with anything going on but it may cause diarrhea (😂). Seriously.

Fourth, the crypto. Cryptosporidium is a parasite. Our body uses its t-cells to fight parasitic infections. Just our luck, this is where Scarlett’s cancer is. Crypto has one medication that can be used to treat it. Just our luck, it doesn’t work in immunocompromised patients. We are going to try anyways. I don’t even want to know how much it costs ($100 per dose I guess). They were able to find a couple doses in Howard and Milwaukee. So the best way to treat it is to let the body do its work. If your body could do its work. The closest study to Scarlett’s case is in children with HIV. It didn’t show any benefit but children were treated for 28 days anyways. We will give it a three day try and see if there is any improvement. Without her body recovering to fight it, I don’t even want to talk about it.

Fifth, our dog. Our dog is old. We know that he is approaching the end of his time. It has been so hard for us to contemplate losing him with everything else going on. We are afraid that his bowel issues may have contributed to her infection. We should get him tested, have him put to sleep, and replace our carpet. In our free time. With our extra money.

Sixth, I am going through some physically and emotionally trying issues myself that I’m just not ready to talk about. On Monday, I will go for tests to see exactly what is going on. It’s difficult to focus on myself when I just want to help my baby. Even Dr. B and Scarlett’s nurse today, when they found out, shared in our misery.

I am not quite sure exactly how much more we can take. Good news or a break or a winning lottery ticket would be awesome. I am so lucky to have the greatest husband to love and support me. He shares in my highs and my lows and takes care of me every step of the way.

September 30, 2016


Maintenance Day 539: Friday Afternoon/Night:

We called the HOT unit this morning after seeing what Scarlett looked like when she woke up. Last night, she was down four pounds since last Thursday. She hadn’t eaten more than a nibble since at least Tuesday. She has been in the bathroom at least ten times a night and more during the day and wasn’t sleeping well the rest of the night. By the time they called back they had already decided that she would probably be admitted.

Scarlett’s tummy pain and diarrhea started all the way back on July 28. We have been trying many things but we always have to give each new idea a couple days or a week to work. So eight weeks went by in no time. But we have been at the end of our ropes for a few weeks now.

Scarlett’s pain is real and it is severe. She can point exactly where it is. Her diarrhea is severe and constant. When we came in, they immediately took a blood culture from her port and started her on a bolus of fluid to treat her dehydration. After a physical and a lot of questions, we went upstairs to be admitted. As soon as we got upstairs she was called for her X-rays.

She was so brave. She had to be alone in the X-ray room. She had to do two standing and one lying down. She looked so tiny and fragile. It was a vivid reminder of the night she was diagnosed. I watched the images come up. I am educated enough to have seen some things but not enough to know what they were. So we will have to wait until rounds tomorrow.

She also needed to give a urine sample and a stool sample. She is such an amazing girl that she accomplished this on the first try with no cross contamination! (Something small and gross but I can be proud anyways). She told me “I just don’t have any more food in me” and then “I like just one hat better”. She is so smart and sweet and knows way more than she should.

Tomorrow will bring an ultrasound, more labs and an infusion of IVIG. She is neutrapenic with an ANC of only 300. We have discussed placing an NG tube (nasogastric tube – in the nose and down to the stomach) but we aren’t sure how much her tummy can handle. We also discussed extending the NG tube into the intestines or starting TPN. Until we figure out what is causing the pain, we can’t make a decision.

Scarlett’s urine came back good so far. No cultures yet but everything else looks good.

I was hoping that this would be a quick overnight with an NG placement, teach us what to do and go home. We can never get that lucky.

Tomorrow is our beloved Snowdrop Courage Over Cancer. This group of people is so important to us. They are the first people we met who had been through this. They have been our rock and our go to for questions. We love them so much and they have all become family to us. This is our one chance a year to see most or all of them together. To give and get hugs and see that kids grow up, get better, and keep living life. It’s where Scarlett met Isaac and Teo and Nathan and Cole and we met the parents of Jake and Harrison and Lilly. The year that I needed them most, we won’t be there. We will miss them all terribly and will fight like crazy to be there next year. We are sending all of our love your way tomorrow!

September 25, 2016


Maintenance Day 534: A Weekend With Froggy

On Friday, Scarlett was given an assignment. It was her turn to take Froggy home for the weekend and play with him. Afterward, she must help to write a story of what Froggy did on his visit. We wrote a story of the fun things that Froggy did: had a snack after school, went to the Color Run, snuggled, did crafts…this is what really happened during Froggy’s weekend.

Friday night, at the Color Run, Froggy listened to Scarlett scream during a prednisone tantrum because Grammy threw away her melted bowl of ice cream. Before that, Froggy watched Scarlett refuse to eat dinner then cry uncontrollably because she was hungry and wanted Daddy to make her dinner in the car on the way home.

Saturday, Froggy listened to Scarlett yell at Evie because Evie asked if Scarlett’s white medicine was making her crabby yet. Froggy watched Scarlett and Daddy make her own mini pizzas for lunch because Scarlett didn’t want the pizza Grammy had ordered for everyone. But when Scarlett saw the pizza that was delivered, Froggy heard her tell Daddy that she didn’t want the pizzas he had made especially for her anymore. She wanted the pizza Grammy ordered. Then Froggy took a nap with Scarlett while her brother and sister played with friends because Scarlett’s chemo kicked in today. Froggy went to bed early because Scarlett was still tired at 7:00. Then Froggy got to watch Mama and Daddy strip the bed and change the sheets as Scarlett took a shower because she has diarrhea so bad that she can’t control her bowels any more.

On Sunday, when Froggy wasn’t sleeping with Scarlett he was waiting patiently while she spent 15 minute bursts of time in the bathroom on a near hourly basis. Froggy helped give Scarlett morphine in the hopes that it would 1) help her sleep 2) alleviate her belly pain and 3) constipate her a little bit to stop this incessant diarrhea.

We will just tell Scarlett’s class that Froggy had a great weekend playing and snuggling. If anyone asks, Froggy can say that his weekend was just fine.

September 23, 2016


Maintenance Day 532: Day 777

It has now been 777 days since Scarlett was diagnosed. 777 days of pain, fear, hospitals, pokes, medicine for Scarlett. 777 days of fear, anxiety, stress, sick days, bills, anger for Brock and me. I’m not sure that any of us remember life before day 1. I don’t remember what it’s like to not have fear. The pit in my stomach has never gone away. It’s been growing lately. 777 terrifying, sad, worrisome days.

Today is significant because it is a halfway point. Scarlett lived a short 777 days before being diagnosed. She has now lived half her life with cancer. 777 days of being just a princess. 777 days of our biggest worry being how much we all slept the night before. 777 days of only putting the best in her body. 777 short, sweet, wonderful days.

She will never again have lived more of her life without cancer than she has with it. She will never again not have to worry about the long term effects of her cancer. These 777 days have filled her body with poison. We have added strangers’ blood products. We have watched her bloat up, wither away, and balance out again. Tomorrow, her life with cancer will exceed the amount of life without cancer.

September 20, 2016


Maintenance Day 530: Finances

I’ve purposely avoided this topic for two years because it’s an uncomfortable thing to talk about. No one likes to talk about money and there are people in much worse situations than we are. But since September is childhood cancer awareness month, here is another thing to be aware of. I can’t speak for other families specifically but in the general sense it’s all the same.

We are used to financial situations. When Scarlett was diagnosed, we had already nearly met her deductible with all of her specialist appointments, X-rays, ER visits…She spent five days at Children’s Hospital. They were pretty uneventful. Nothing too out of the ordinary for a new leukemia diagnosis. We got the bill about a month later. It was over $77,000. Thank goodness for insurance! For the rest of 2014, I kept really good track of what we paid for every appointment. My goal was to keep track of how much leukemia treatment cost and how much we actually paid. At the end of the year, less than four months into her treatment, I called the billing department to get a printout of her bills. They kindly told me that they didn’t have enough ink or paper to print a complete bill. They would have printed a book.

We have spoken to social workers about programs to help pay for medical expenses. Unfortunately, we make too much to qualify for Medicaid. Our family is in that unfortunate bubble where you make too much to qualify for help but you don’t make enough to pay your bills. We are extraordinary grateful for insurance to help us pay but we still have a deductible to meet. So far this year, Scarlett has had nine monthly appointments and, for each one, we have had to pay $1000. There are so many other ways that we could spend $1000 a month. That doesn’t include medications, supplies, or gas to get to the hospital.

On top of the actual monetary cost, families also have to worry about work time lost. When Scarlett was diagnosed, I took FMLA. But we quickly realized that it was just more logical for Brock to be the primary caregiver. He stopped traveling for work, cut his hours and stayed home with her when she was sick. This was absolutely necessary for the first year. Now that we are in maintenance and time is less demanding, it has been difficult for Brock to get back to work. The opportunities just aren’t there. So on top of spending more money to pay for medical bills, we are also earning about 75% less of his salary.

From the very beginning, we sat down and talked about finances. We knew it was going to be a tough few years. We were going to have to give up a lot of luxuries and cut costs. We had already been doing that so we didn’t have much to cut. We don’t have “toys”, we don’t go out, we still wear clothes that we bought nine years ago. But we wanted to be sure to keep a little bit set aside for ourselves. When we were approached about having a benefit for Scarlett, we refused for a long time. We didn’t want to feel guilty if we went on a vacation and have people think that that’s what we used the money for. We didn’t want to be judged every time we bought something. It is a very difficult situation to be put in. We finally gave in and are so grateful to everyone that contributed. It allowed us to have that extra “cushion” of savings for an emergency – which we needed later last year for our flooded basement. And it allowed us to continue to put aside that little extra money to take a vacation this year.

I guess the thing that I want everyone to know is that cancer is not cheap. It can destroy families for many years. When you see benefits for people, it’s just as difficult for them to accept money as for you to give. Even as treatment gets less intensive, the bills don’t. We are struggling more this year than we did in 2014 or 2015. Stressing about money just adds more stress to an already stressful situation. If money and illness are leading causes of divorce, it’s no wonder that divorce rate is so high in parents of children with cancer. The cost of treatment is a lot more than hospital bills.

September 9, 2016


Maintenance Day 519: Another Decision

After a lot of thought, discussion, encouragement from friends we have made a decision regarding school for Scarlett. She and Evangeline WILL be going to school today. These are the reasons for our decision:

1. Before she was diagnosed, Scarlett was up to date on her vaccines. Because of when she was diagnosed, she has not missed any further vaccinations. We would have to do antibody titers to see exactly HOW protected she is but we will wait on that.

2. Exposure is an unknown variable. We know about this child. We don’t know about every kid at the park. Or the last kid to touch a cart at the store. Or about every kid in her gymnastics class. Since we know about this child, we can take extra measures to protect her.

3. For a four year old, Scarlett is an excellent hand washer. She’s actually an excellent hand washer for an adult! She remembers to do it and she does it well.

4. Their teacher is excellent. She began for Scarlett this summer and has precautions in place for her. I know that she will keep Scarlett as safe as she can.

5. In the future, we will not know about the status of their classmates. We do not know the vaccination percentage in Tate’s class. He is just as likely to bring germs home as Scarlett is.

6. Our friends, mothers of cancer fighters and survivors, helped me through. It opened up a topic of conversation and they talked me down from the ledge. They offered encouraging words and advice.

7. We want Scarlett to have some normalcy in her life. We want her to have a safe place to learn and experience. At some point, we have to get into a normal life routine.

There was a lot of thought that went into this decision. We talked, I cried, we asked a lot of questions, we did a lot of research. It was not an easy decision. Just like our decision with radiation, we will never know if we made the right decision. If Scarlett doesn’t get sick this year, that’s great! If she does, we will second guess that decision forever.

September 8, 2016


Maintenance Day 518: And The World Still Turns

For the past four or five weeks, Scarlett has been complaining of abdominal pain. We didn’t know whether or not to believe her at first because it often came up when she was told to clean or it was time for bed. Nothing that we tried, including reading “The Boy Who Cried Wolf”, seemed to make the pain go away.

After the “poop appointment”, Scarlett’s issue improved. The next week we decreased her methotrexate back down but the pain never went away. As soon as we increased her methotrexate again, the diarrhea came back. “My belly hurts” was heard a lot. At her regular appointment we discussed a tiered course of action. Increase her Pepcid to a full tablet twice a day. If that didn’t work, give a half tablet of Tums. If that didn’t work, give 1 mg of morphine and keep increasing up to 3 mg. we got to 2 mg before she was knocked out. And when she woke up: “my belly hurts”.

Last night, Scarlett took her puke bucket to bed with her. When I gave her her meds, the bucket was next to her head. She awoke in the middle of the night crying and slept with us. This morning, we had trouble waking her and our breakfast eater wouldn’t eat. So back to clinic she went.

It is our guess that the diarrhea has killed both the good and bad bacteria in her gut. We will change her Pepcid to a stronger medication for stomach acid and give yogurt twice a day. We will also eliminate dairy for the next two weeks. It’s going to be a long two weeks for our cereal, cheese and milk junkie.

Our other problem today was with her blood draw. After being accessed, the nurse couldn’t get a blood flow. Her port is failing. This is the third time in less than six months that she has had to have CathFlo to open her port. The port has reached its life expectancy and is puttering along for the last few months. We are going to push that thing right to the end of treatment. Scarlett wants to keep it after they remove it!

Even as we deal with problems with school, the world still turns. Life does not stop and we aren’t limited to one problem at a time. Life doesn’t stop for cancer.

September 7, 2016


Maintenance Day 517: A Letter I Will Never Send

Today was supposed to be a great day: our beautiful daughters’ first day of school. While all of the other parents were laughing and encouraging their children, enjoying this special moment, we were pulled aside by the teacher. As she went through the children’s medical records, she discovered that one of the children in Scarlett’s class is not vaccinated. There are many things I would like to say but my conscience stops me. I understand that nothing I say can convince another parent to change their beliefs. It’s not going to matter so what is the point. But when I am upset, I write. So here is my letter to that parent:

This morning, my daughters got dressed
for their first day of school. They had
new outfits that they picked out
themselves. They got their backpacks.
They took their pictures. They smiled
and laughed on their way in to preschool.
They were just like your child.

Except my daughter is not like your child.
My daughter has cancer. She has had a
drill bored into her hips. She has been
poked with a needle more times than
we can count. She has had surgeries,
lost her hair, watched friends die. She
has suffered through sickness and pain.
She has suffered enough.

As parents, we have watched all of this.
We have held her head as her whole
body wretches. We have washed her
bloody hands, raw from the medications.
We have wiped her bottom while wearing
masks and gloves because our own child
is too poisonous for us to touch. We have
worried and cried and planned. We have
neglected our other children. We have
suffered enough.

We have raised money. We have opened
every aspect of our lives to the public to
bring awareness in the hopes of a cure.
We do this, not for our child, but for yours.
We hope to stop this horrible disease in its
tracks. We hope that not one more child is
diagnosed with cancer, not one more child
suffers, not one more child dies. We do
this for society, for the greater good.

Today my daughter went to school.
Tonight, we have to make the decision
of whether or not to send her back
because you did not vaccinate your
child. You put our child at risk with
the decision that you made. Now I
have to make the decision of how I
am going to make my child suffer
even more. Do I risk exposing her to
a disease that is nearly wiped out in
America, brought back by unvaccinated
children? Or do I break her heart and
tell her that she cannot go to school any
more? A “simple” disease like chicken
pox could kill her. We have made enough
decisions in the past two years. Decisions
that our child’s life depended on. You are
forcing us to have to make another decision
that we shouldn’t have to make.

We ask one thing of you after all of our
suffering. Take care of society, think of
the greater good. Vaccinate your children
to protect ours. Vaccines do not cause
autism. Vaccines do not cause cancer.
Vaccines save lives. FACT.

I can call you selfish. I can call you
stupid. I can call you names that are
a lot worse because I am that angry
today. But that won’t help me tomorrow.
You won’t be there to wipe away my child’s
tears because she can’t go back to school
or hold her head as she lays in a hospital
bed dying of measles. Your decision
doesn’t truly affect you. You will probably
never see the ramifications of your actions.
Because we vaccinated our children for
the greater good. We vaccinated our
children to save yours.

I am just a mom, trying to protect her child. The difference is that I have science, facts and statistics on my side. I am angry, sad, hurt and ultimately helpless. I cannot force the school to tell this child’s family to vaccinate or change classes. But I can use my voice to encourage my state to eliminate personal exemptions for school vaccines. I’ll just add this small task to my very short list of things to do.

This will be a letter that I will never send because I am a coward. I will not confront this family (partially because I don’t know who they are). They may never know that my daughter is (or was) in their class. I am too much of a coward to let them know how much they made me and my daughter cry. They will never know how much their decision affected our family.

So I ask you, please think of children like Scarlett when you consider vaccinating. And please pray for Scarlett to make it through the year healthy and safe.

August 25, 2016


Maintenance Day 504: All’s Well

This week, Scarlett was blessed with two appointment days in a row. Wednesday was her four year well check. Since her pediatrician only sees her once a year, she was amazed with how great Scarlett looked. Her check up was great and Scarlett is really growing! Even with everything going on, Scarlett is still in the 26 percentile for height and 45th for weight. We got Dr. C’s opinion on Scarlett’s feet and her chin rash. We will try a new medication her feet. However, at this point there is no way to tell whether her chin rash was shingles. It was another opportunity for us to thank Dr. C and Dr. H for everything they did to diagnosis Scarlett. Dr. C cried along with me as we recalled those long six weeks. It is a time and a relationship we share that no one else will ever understand.

Today’s appointment was with her oncologist. As we prepared, Scarlett was aware that she could not eat beforehand. She packed herself a snack, her blankie and her big phone. The whole ride there was pretty quiet. She loves being with Child Life and the nurses but she completely understands. Every once in a while, she climbs up on my lap, grabs her blankie, buried her head in me and sits very quietly. She stops answering questions and talking when she knows a poke is coming but she always cooperates.

Scarlett’s labs came back very good today. Her Hgb was higher than I remember at 11.9. Her platelets were stable and her ANC was 2000. Still a little higher than we want so we knew would increase one of her medications. I spoke with Dr. H about my laundry list of issues this month. The most recent is a new rash that developed on her hands yesterday. Dr. H’s first thought is hand foot and mouth. Ugh! Every time we plan to send the kids to Nana and Papa’s house. We are waiting to see her pediatrician tomorrow morning to know for sure. A diagnosis is not necessary as there is nothing to do but it may dissuade her oncologist from admitting her for a fever. Update: we saw the pediatrician and it was NOT hand foot and mouth!

Our plans for this month are to increase the methotrexate dose back to 125% and see what happens. If she tolerates it, great. She’s back on schedule. If she gets sick again, then we know she can’t handle any further dose increases of that and we will increase her mercaptopurine.

In the next month, we will be cheering Nathan Stoffel in the Ironman Wisconsin (which he will do in Scarlett’s honor) and Scarlett will be starting school. This is a big change in our lives. It is the first time that she will be in a big group on a regular basis. We pray for a healthy school year and no sickies!