October 9, 2016

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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.

October 6, 2016

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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.

October 5, 2016

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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.

October 2, 2016

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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

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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

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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

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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.