Post treatment Month 4

Scarlett’s check up turned out great. Her ANC is 2900 and all of her labs look good. She has been complaining of a sore tummy so that was our big concern today. We don’t know (again) if it’s attention seeking or real although it seems pretty consistent. It could be acid reflux which she has had since she was a baby or a left over effect of her cryptosporidium infection. I believe that the two infections were pretty rough on her entire GI system. We will try omeprazole for the next week and see if it improves.

We have been spending the past few months adjusting to life again. It seems like every time we hit a new treatment phase, it is like starting a new chapter. We need to pause, evaluate and come up with a new plan. We are still in the “pause” phase, I think, and just taking one day at a time. I think that every new chapter is a shock to the system because there should be less to worry about. Should be. There are always wake up calls – fevers, sickness, new opportunities to think about, friends situations…our friend Emma’s relapse is really hitting us hard. It’s a scary thing to think about. In my mind I know it’s rare but my heart still aches. It doesn’t help when Evangeline tells me one night “I just don’t think I’ll be in this world very long”. What?!? Scare me to death child!

Bottom line is, even when things are quiet, they are never really easy. Childhood cancer never really goes away. It’s always there. We have lots of friends needing prayers this month, too many to name. Please keep them all in your prayers. Thank you!

One Month Post Treatment

It’s technically not one month since her last dose of chemo but Thursday was Scarlett’s first post-chemo appointment. She still has her “button” (port) so she was accessed for blood draw and to flush it.

Her check up went quite well! She looks great! She’s been in physical therapy for a month now and enjoys doing her “exercises”. She is active and energetic. The only complaint we had was a rash that reappeared. It developed in October when she went off chemo for a few weeks. Dr. H told us that, as children detox from the chemo, the body’s allergic response hyperactivates and kids can develop rashes. That, on top of her sensitive skin, has created a perfect storm of itchy rashes and eczema over her entire body. Dr. B went over tips for reducing the itchiness and rashes (only 2-4 baths per week, lotion at least twice a day, stop washing hands – which goes against everything we have taught her). Her hands are the worst because she is a very good hand washer. But by washing so thoroughly, her hands are in danger of breaking open and introducing a blood infection. Scarlett’s ANC was a whopping 6000! Dr. B felt like she is on her way to being able to fight an infection on her own. We will do one last dose of IVIG next week and remove her port the following week! I feel like we only have two more steps until we have a sense of “closure” and port removal is one step.

Dr. B went over the list of side effects that we need to be on the lookout for. He said it’s a day he loves and hates – celebrate being done with treatment but now listing all the new things to worry about. One day at a time I guess. We love Dr. B and his sense of humor, honesty and respect. One of the side effects is regression in cognitive function or learning disabilities. Dr. B said “well in Scarlett’s case, it will probably be going to Yale instead of Harvard”. Oh how he knows our dear girl! I hope that’s the only problem she ever has to worry about!

Maintenance Day 604: Hip Hip Hooray!

Our hospital doesn’t have a bell like a lot of other hospitals do. We loved watching Isaac last year ring his bell. So we decided to do it ourselves. Scarlett has been practicing for weeks. She always needed help finishing the saying but today she rocked it!

Our celebration today brought together people that have been so supportive to us throughout this journey. Scarlett’s celebration was a celebration for them too. As I got ready this morning, I took time to thank God for my blessings. I broke down because I have so much to be grateful for.

* For Scarlett’s doctors especially Dr. McHenry, Dr. Callahan, Dr. Brandt, Dr. Hill, Dr. Long, Terri and Kris. Without them, Scarlett wouldn’t be alive.
* For Scarlett’s nurses who cared so deeply for her, physically and emotionally.
* For Child Life who made her happy.
* For Brian and Laura Gruender who introduced us to such wonderful and amazing families and made us feel at home.
* For Julie and Nathan Stoffel and their entire family (especially Cole) who carried us for this past year. Giving us something to cheer for and look forward to helped us get through.
* For Kim and Emma Paulsen who taught what it is to truly give.
* For Jennie and Chris Schneider who were our first “cancer friends”. You have always been there to talk to, lean on, cry with, celebrate with.
* for Anna Schultz who knew we would need financial help from day one.
* For Suzanne Shandonay and Monica and Chuck Helmuth, family who held fundraisers for us.
* For Ashley Shandonay who was always on call when I needed a running buddy or someone for a Snowdrop event.
* For Michaele Oberbroeckling who sent packages and was always available for me to ask medical opinions.
* For Brian and Jeanne Eickmeyer who offered us their home.
* For David and Roberta Eickmeyer who were always there when we needed something or someone.
* For Rachel Eickmeyer who brought childhood cancer to our former high school.
* For Christi McElroy, Keri Ann Kelsey, Olivia Heiman, Megan Andrews who knew that we would need a bigger financial infusion and put together an amazing fundraiser.
* For Megan and Debby Andrews who stayed with our kids and loved them as their own.
* For Rose Heiman who was my sounding board and shoulder to cry on.
* For Megan Haas who was always there for me.
* For Peggy Tafelski, Rod and Lynda Tafelski who were always supportive.
* For Scott and Mary Eickmeyer who were always a phone call away and have given everything for us.
* For Matt Andrews and Julie Andrews who gave up part of their wedding day to raise money for Scarlett.
* For Matt Andrews and Bill Bickel who made sure that Scarlett was financially set up for the future the day they found out.
* For Mrs. Mazemke and Mrs. Thiel who gave Tate a second home at school during our most difficult year and who are now giving our girls that home.
* For Tate and Evangeline who are the bravest, most understanding and caring kids I could have asked for.
* For my husband who has been my rock, my strength, my other half. We could not have survived without each other.
* And mostly, for Scarlett who is so brave! So smart! So understanding! So strong! For all of our challenges with her, we can’t imagine one day without her.

We also remember all of our cancer friends. There are so many who have touched our hearts – Eli, Lilly, Harrison, Elysia, Daxton, Keegan, Bo, Jake – more than we can name. Some of them we have celebrated with, some we hope to celebrate with soon, and some who never got to ring that bell. Remembering them is what makes this day truly blessed. We get to celebrate. We get to see tomorrow and we are more than grateful for that! Thank the Lord for this day!

“When your last chemo has come and gone,
Ring that bell to tell everyone!
It’s time to celebrate- hip hip hooray!
What a great feeling, what a great day!”

Maintenance Day 597: So close

Eight days left. That’s it. Should be smooth sailing. But nothing can be that easy for us.

Scarlett started with loose stools on Tuesday or Wednesday. Right away, our hearts sank but Brock didn’t say anything to me and I didn’t say anything to him. Maybe we could will it away. Things stayed pretty much the same until Friday night. She woke up three times during the night to go potty. She cried for us each time. We thought we could wait until Monday. But Saturday morning we knew. Brock spent the morning on the phone with Dr. H, the lab, central scheduling, going to the hospital to pick up a stool specimen cup, collecting stool, bringing it back to the hospital and wiping bottoms. (What a great Daddy!). By 2:00 she had tested positive for cryptosporidium again.

The cryptosporidium from her last infection never went away. It stayed dormant in her body. She has had a cough since we left the hospital and I’ve been curious to know if it is crypto (it can settle in your lungs). When she took her last round of steroids, it weakened her immune system enough that the crypto reactivated and is wreaking havoc on her poor body again. Last night she was up five times to go potty. She is bleeding pretty profusely with each stooling. She is in pain as her intestines contract to try to get rid of the intruder. The only medications to help the pain are morphine and Benadryl. But both of those will make her sleep soundly enough that she won’t wake up to go potty. She is too proud to wear Pull Ups. Her Piggy seems to be helping. Warm baths help, too.

We immediately began treating with the Alinia. She will get almost three days before we check back in. At some point, I’m sure we will do another stool sample to see if it’s clear. Whether this takes a few days or a few weeks, we don’t know. We don’t know if she will be admitted. She is home for now, providing that she continues to eat and drink. (That is essentially what brought her in last time – she stopped eating and was going to get an NG tube). We are trying to keep life as normal as possible. Luckily, she already has the week off of school. She can stay home and relax and just work on getting better.

For the time being, she has discontinued her chemo meds. Whether she goes back on them, we don’t know. She only has nine doses left to take. Her “lasts” have been very anticlimactic. She won’t get her port out so she doesn’t even notice that her last IV chemo was her last. We didn’t know when we gave her her 6-MP on Friday that it may be her last dose.

I can’t tell you how Scarlett feels right now. I don’t know how much pain she’s in or what this is doing to her little body. But I can tell you that Brock and I were…traumatized, for lack of a better word, after her last hospitalization. We did not expect her to get so sick being so close to the end. We watched her blood pressure plummet and her heart rate sky rocket multiple times. We watched her pass huge blood clots. To experience that again would be awful. Just as we began planning and hoping for the end of treatment (we didn’t even ask what Scarlett’s end date was until September because we didn’t want to take one day for granted), we were knocked on our butts. It was like God saying, “haha, not so fast”. We finally planned her party after she was discharged and now we are blindsided again. I’ve watched this poor, innocent child go through so much. Multiple times a night, she sits on the potty for half an hour and nearly falls asleep with her head in my lap. Listening to her whimper breaks my heart.

Every day I feel like I can’t take any more. Then the next day comes and more bad things happen and I think I can’t take any more. The moments when I see her smile push me to keep going. People can say we are strong but we aren’t. We are weak and breaking inside. But we are parents. We have no choice but to smile and deal with the situation. Because she must. How can we give up when she keeps going? She is tired and weak some days but she smiles and laughs anyways. She guides us. We are weak but she is strong.

Maintenance Day 587: Celebrate!

Today was Scarlett’s last dose of IV chemo and last lumbar puncture. When she was diagnosed, it seemed like this day would never come. I never wanted to think about it because I was too afraid. Two and a half years seemed like so long.

We began the day delivering cookies. Seven dozen cookies was such a small gift to the people who had done so much. We gave orange and gold ribbon cookies. The valet staff, who were much appreciated on those cold days when nothing could warm her up and have always asked how she was doing. The pharmacy, who I of all people, appreciate so much. We never questioned her doses, never waited long for her meds, and they searched all over the state for Alinia during her last hospital stay (and even sent the extra doses home with us). The 10th floor…I can never say enough about the 10th floor. They have been so accommodating, so caring, so wonderful. Some have held us as we cried, brought special little treats (or a tiny little commode), fight each other over who gets to care for us, gave us comforting words, encouragement and silence when we needed it. They have listened to our worries, laughed with us, loved Scarlett, cried with us. They have become true friends. And the clinic staff…oh my gosh. We truly owe them everything. The nurses know everything that Scarlett wants – to open her band-aids, eat right after LP, use the orange wipes for deaccessing, hold Mama’s hand during LP. The Child Life department who has special toys set aside just for Scarlett’s LP, knows just what movie she wants to watch, that she wants an activity every time, and that she likes a lot of glitter. And the doctors. They literally gave her back her life. We have grown especially fond of Dr. B. He has respected us throughout the process – understanding our level of knowledge, deferring decisions to us, allowing Scarlett to be discharged early on multiple occasions, gave us his cell phone number and giving Brock “prescriptions” when we disagree on things (still not getting that falcon, babe).

With help from great friends, we finished our list of backpacks. It has been a really fun project. Some of my favorites have been the little girl that loved My Little Pony and the little boy who liked Legos. But my favorite was the little boy who dreamed of going to the Packer Hall of Fame with his dad. We were able to give him a backpack full of Packers gear and two tickets to the Hall of Fame. I spoke with Amy today and she said that the kids just love them. They get so excited that, not only do they get something special but it is full of things just for them. One family refilled the backpack and brought it to their next appointment to give to someone else. That is exactly what we hoped would happen – to start a chain of love and giving. To finish that list was a great accomplishment but we aren’t done. We will continue to fill them as we can.

Last night we told Scarlett that she would be getting her last butterfly today! She started crying. She didn’t want to get a butterfly at all. During the night, Brock found her on the stairs crying because she was afraid. The trauma of everything the past two plus years is hitting her now. She has also been bragging to her siblings that she isn’t going to feel her flu shot because she is going to get it while she has sleepy medicine. Unfortunately, the day didn’t go exactly as planned.

Her access went pretty much as usual. She cries, more out of fear than pain I think. Then she starts a craft. Today, she had a big sign that said “Today is my last dose of chemo!” Her check up went well. We have another unknown skin issue to deal with. Hopefully that goes away in the next few days. Otherwise, we go to the pediatrician or dermatologist while we have her deductible met. Everything looked pretty good. However, we spent quite awhile discussing the IVIG that she has been getting. We can not know whether her IgG level is in range because she is making it herself or because the IVIG is raising it. Her doctors would possibly like to continue that through the winter. Which means that she will not get her port out yet. We decided to check her IgG level today to see what it was and then make a decision. Since IgG “cancels out” the flu shot, we would decide which of the two she would get. The lab called to tell Dr. H that the machine that measures the IgG had just broken and they would try to fix it. It still wasn’t fixed when we left the hospital so we gave her the flu shot. Unfortunately, by then, her sleepy medicine had worn off. All of that bragging and “nanananana”s backfired on her big time.

We had planned and expected to have Scarlett’s port removed in about two weeks. We had told her that she would get her last butterfly today. We were wrong. We hope that at her next appointment, her IgG will be high enough to discontinue giving that. We hope that we can have her port removed before the end of the year so we can save a little money next year. We hope that her port can be removed as soon as possible so we can finally apply for Scarlett’s Make A Wish. We hope that her port can be removed so we don’t have to worry about fevers and line infections. We hope that we never have to deal with a port again.

But today we celebrate. It is a day we have been looking forward to and praying for. Our little Scarlett is DONE with IV chemo and lumbar punctures!

Maintenance Day 574: Dear Mr. Buble:

Welcome to the childhood cancer family. It is a family no one wants to be a part of, a family no one chooses. But we know your son. We know what he is experiencing, what he is feeling, and what medicines he is taking. We know that he will lose his hair, will throw up, will cry in pain. And we know that you will suffer. You will suffer the pain of watching your son suffer. You will experience the same feeling of helplessness, fear and loneliness that we do. You will be frustrated, angry and helpless when you find that your son is only worth 4%. You will spend moments crying into your pillow or out the window, only to turn around with a smile on your face so your son doesn’t see your tears. Your heart will explode with pure joy and pride when you watch your son fight a villain that he doesn’t see. There is no experience like watching your warrior and knowing that he is a part of you. We know all of this because we have been through it too.

Childhood cancer knows no difference between socioeconomic status, race, nationality. Money can’t prevent it or take it away. Trust me, I think all childhood cancer parents would give every penny they had if it would bring us a cure. Knowing that you could have literally taken your son anywhere in the world and you chose treatment in the US makes me confident that our hospitals are the best.

We are a family. I have never met you, I probably never will. But I know what you are experiencing. Our hearts are breaking for you, your wife and your children. It will be a long and difficult road but you are in no way alone. You have the rest of your new family. For we will be praying for you, picturing your son’s face when we discuss cancer, hope for your well being.

My advice to you is this: lean on your wife. Let her lean on you. Cry together, talk together, share your feelings and emotions. But love each other. Soak up every moment with your son. Although it may be difficult to see his tiny little body, withering away, take pictures. Enjoy every moment – the good along with the bad. Those bad moments will determine who you are. Laugh. A lot. Every moment that you can. Even when she is crying, there will be a moment when you can make your wife laugh. Do it. Allow your son to make you laugh. It will make the days easier and the memories that much better. Spoil your other son. He may not remember this but it will shape him. Tell him he is important and that he is special.

If you can, when you have an extra moment, contact another family. Read another story. Let someone inspire you. You are not alone. You have a new family to depend on and seek advice from. We are here to answer questions, inspire you and to listen. We are your cheerleaders.

And we will rely on you. We hope that seeing childhood cancer firsthand will inspire you to be a voice for this family. Use your fame and celebrity to bring good things to children like yours. Use the anger and sadness from watching your son to push you to do great things. We believe in you! And when you are feeling defeated, as you inevitably will, remember that you have a new family to pick you back to keep going. Your son is going to need you.

Maintenance Day 552: Under One Roof

This week has been very fast moving. On Monday, Scarlett was doing very well. So well, in fact, that we tried to decrease her IV fluids and increase her oral intake. On Tuesday, we started planning for discharge! She improved so much so quickly. Tuesday her TPN went down to 50%, Wednesday down to 25% and today, nothing.

This morning, her stool was tested for cryptosporidium and it was NEGATIVE! She will have one more day of her medication and she will be done! Hopefully, her diarrhea will resolve over the next week or two since she finished all of her other antibiotics tonight. At 6:00 tonight, our princess was discharged! She is now home and happy and playing with her sister.

Tomorrow, Scarlett will have two more doses of Alinia. She will start a probiotic for a week. She has a note that she can go back to school but we will see how she feels when the time comes. It will take about a week to get her back on schedule, willing to sleep by herself, and eating normal food again. We also have to deal with the unknown questions. How will she do going potty by herself? Can she sleep through the night without going potty? Will she have accidents? What will her first “real poop” be like? 😬 Coming home is sometimes as exhausting as being in the hospital.

In addition to that, we have her regular monthly appointment next week where will restart her chemo. It looks like she will get the IVIG at her last few appointments. The plan is to start her chemo at 25% of her previous dose. We don’t know how she will react to restarting the methotrexate. Please, God, don’t let her start with the diarrhea again!

On Wednesday, Evangeline awoke very crabby. Right before I left for work, she told me that her head hurt and the only thing to help it was to go to sleep. After school, she still had a very bad headache, threw up in the car and fell asleep for three hours. So next week she has an appointment to discuss migraines. We seriously can’t win. But for tonight we count our blessings and count our three babies asleep in their beds under one roof. Life is good!

Maintenance Day 548: An Improvement

Thursday: Thursday was a scary day. All day I was on the phone with Brock. Her vitals were back and forth all day, her fever was up down. At 4pm, I finally left work and raced down to the hospital. Her fever was 104, BP was 60/30 and her HR was 212. Brock wasn’t feeling well so I decided to stay at the hospital myself Thursday night.

Friday: Overnight, Scarlett started bleeding. Her GI tract is so inflamed and tired. Throughout the day on Friday, the bleeding grew worse and worse. She was passing blood clots every time she went potty. Of course, mama had to work and daddy wasn’t feeling well so her worst day fell on Auntie Megan and Aunt Roberta. It was scary and exhausting. At 4am, her Hgb was 9.7. By early afternoon, it was 8.8 and by 9pm it was 8.2. She received a blood transfusion overnight. By morning, her Hgb was back up to 13.

Saturday: today seemed to be a turn around. The bleeding is nearly gone. Every once in a while, she has a few flecks of blood but nothing really visible. Her ANC is 850 and white count 4.5. Her fever has topped at 100.2. She did physical therapy today, ate, drank, played with toys and talked! Hearing her talk is the biggest sign of improvement. Saturday night, I fell asleep before Scarlett. She just sat next to me in bed talking to herself and laughing.

Sunday: This morning, Scarlett’s lab results were awesome! Her Hgb is still 13, her platelets are over 100 and her ANC is 3450. The plan is to allow her ANC to remain high and fight the infection for a while before restarting her chemo. She will most likely be here until next Saturday when we will see if she still has cryptosporidium. She cannot go to school again until she tests negative. I don’t really expect this next test to be negative but it would be amazing if it was! Our goal today is to get up and moving, drink enough water to stop her IV (it makes her go a lot overnight) and to not have any accidents today. It’s asking a lot but it all needs to be done before we can go home. Tate and Evie came to visit today. Evie and Scarlett played with the dollhouse for close to an hour. It was so wonderful to hear both of their voices again. Tate sat by me for quite a while. I miss them together so much. Overall, Scarlett’s day went well. Hopefully every day will get better.

Maintenance Day 545: An Improvement Would Be Nice

I don’t even know where to start today. There is so much to organize and plan while things are moving a mile a minute around us.

Yesterday, Scarlett spiked a fever. All day she fluctuated between 100 and 104 degrees. She slept a lot. Because of this, she was started on two antibiotics to cover any bacteria that she may have. If she has a virus, we just have to wait it out. This morning her fever was down to 98 but this afternoon she was back up to 104. It is currently 102.8. She doesn’t feel warm but she is chilled.

Her ANC went down the past two days. While this is worrisome, her doctors are optimistic that she is making the baby cells that will develop into infection fighters. It is a slow process and, as with every past infection, is a patience testing process.

She has been getting morphine all day for the abdominal pain. It seems as though she is having a lot of cramping. She feels like she has to go potty but she can’t. Her intestines are so irritated that they are bleeding. She also seems like she wants to throw up. She carries an emesis bag with her now instead of her puke bucket.

Things seem really bad right now. I think we would feel better if we saw some sort of improvement – her fever going down, less cramping, a better mood. Any one thing would lift our spirits tremendously. Her doctors look for other signs of improvement and are seeing little bits here and there. But we need a little bit of forward progress to give us some energy.

We have to thank everyone that has given or offered help. Right now, there is nothing we really need that can’t wait. The things that we do need are things that others can’t help with. Both of our pets tested negative for cryptosporidium. It is a relief to know that they are not the cause. I feel like we say this far too often, but we cannot thank everyone enough.

Brock and I are holding up. We are tired, worried, stressed, being pulled in a hundred different directions. We feel guilty when we are not with Scarlett and guilty when we are not with Tate and Evangeline. I would give anything to be with them every minute that they need me but my job pays our bills – including Scarlett’s hospital stay. There may be moments when we make a joke but that doesn’t mean we aren’t a ball of nerves inside. There may be moments when someone asks a simple question and we completely unload every emotion we are feeling. It’s difficult to control our emotions. Hopefully tomorrow brings a further improvement to lift our spirits.

Maintenance Day 544: Scared

The past 24 hours have brought more challenges to our sweet Scarlett. Late Tuesday afternoon, she spiked a fever of 102. With that, came a return of her diarrhea. Throughout the night, her fever went up to 104, her heart rate was in the 180s, and she was in the bathroom every 2 hours. Sometimes it seems like she doesn’t even know that she is going. It got so bad that the nurses requested that she start wearing Pull-Ups. Scarlett was not having it. She fought Brock and cried so hard she almost threw up. After he explained the reason, she seemed to understand. Then she thought she didn’t have to get up to go anymore. So neither Brock nor Scarlett got much sleep last night.

Wednesday continued in the same vein. The fever has not gone away (although at her 5:00 vitals it was down to 100.2 but 6:00 was back up to 102.6). Her heart rate finally is down into the 150s. Her BP is stable. Both the nurse practitioner and doctor saw Scarlett today. They are very concerned with her condition. Scarlett was started on two more antibiotics today. Hopefully those will cover any bacterial infection she may have. Evangeline had a fever last week so Scarlett may have caught that and it’s hitting her so much harder. Her ANC was down today. Hopefully tomorrow it will be higher. She can’t fight anything without that.

Scarlett didn’t have enough energy to do physical therapy or Child Life. She slept a lot today. She hasn’t eaten much today. I’m thankful that she has the TPN.

Her doctors are very concerned. They encouraged Brock to come home today. Tate and Evangeline need us tonight. Tate cried this morning because he misses Scarlett. He has met with the school guidance counselor to talk about how he feels when she is in the hospital. Evangeline told me this morning that nobody loves her. They only love Scarlett. All of this makes us feel completely torn in two. We need to be with all of our kids. They are desperate for normalcy. So are we.

I was able to get stool samples from both of our pets today and deliver them to a local vet. We hope to hear an answer by Friday. Just knowing would be nice. Yesterday, I spent almost an hour on the phone with the health department. They wanted to know every place we have visited, eaten, swam…since July 28. Not only every restaurant we have eaten at but the exact date, time and what Scarlett ate. Every garden she has eaten from. Whether we use manure. What she ate from it. What pools she swam in. What freshwater lakes, river, streams she has been to. Have we flown anywhere? How are our pets? Do they eat raw meat? Has Scarlett played in a field? Been to a farm? A petting zoo? This went on and on and on. I can barely remember yesterday let alone nine weeks ago. If our pets test negative, our next guess is that she went tubing in the river. But it’s too late to test that. We may never know the source.

Scarlett’s vitals were scary today. Her new infection is scary. Her lack of ANC is scary. Any one of these alone are enough to be scary. All of them together is terrifying. I’m not sure that I will sleep tonight knowing that neither Brock nor I are with her. My mom will be staying there and I know that she would never let anything happen to her but it’s just not me. The fact that her doctor told Brock that he is concerned has us scared. We are desperate for an improvement. This is the most afraid I have ever been.