In April of 2018 Scarlett was still in the PICU at Sanford when she was nominated by Dr. Mauriello for Make A Wish. She remained in critical condition, but was improving. I remember him saying something about submitting an application for Make A Wish during morning rounds one day, but didn’t think much about it as Scarlett’s condition was still guarded.
We were very excited when Scarlett’s Wish Granter, Dawn called to let us know that Make A Wish ND was going to grant a wish for Scarlett. We met with them in early October. We decided not to talk to Scarlett or our other kids about what was going on. After all, it was Scarlett’s only wish and we wanted it to be her’s. Her wish granters came to our house and asked Scarlett questions about what she liked to do, then they talked to Sheldon and myself about our family and Scarlett’s needs. Her lupus makes her extremely sensitive to heat and sun. She cannot be around large crowds. We have to be careful with what she eats as preservatives and gluten tend to contribute to flares. Scarlett had not been home very long when we met the Make A Wish volunteers for the first time. Questions about Scarlett’s prognosis and what was important to our family really stirred up emotions in me.
The most precious thing you have with your children is time. You can never get back today or relive yesterday. You never know when your family might receive a life changing or absolutely devastating diagnosis and all you want is more time. You think that something like this could never happen to you or your family. I felt the same way, until it did. I know what it feels like to be told that your child will not survive. I give credit to God and Scarlett’s amazing team of doctors and nurses that she did. I also remain positive for her future even though her doctors have a hard time giving us a long term prognosis, but they have been very encouraged by her progress and remain positive as well.
The best part about being gifted a camper from Make A Wish is all the memories we will make for hopefully a long time to come with Scarlett and all our kids. Scarlett is looking forward to camping with her sister and little brothers.
We are so grateful to Make A Wish ND and everyone that supports them. They are changing lives for the critically sick and terminally ill children. Giving the most important gift. Time for families to be together and memories that last forever.
Last Wednesday Scarlett had her adenoids removed and PE tubes placed. She has had many infections these last several months and we are hoping this helps keep her off so many antibiotics. She was intubated for two months in the PICU so there was concern over how much stenosis she would have from this and how well she would tolerate anesthesia for her surgery. She did very well and as far as it could be seen she hardly has any stenosis which is quite remarkable. She also had several of my former co-workers taking care of her which was special and they did an excellent job.
Two days after her surgery she developed a fever and it continues today. Last night I brought her to the ER for the first time since she came home from the PICU. I’m pretty sure the ER doctor thinks I’m slightly nuts because I was demanding (very nicely) multiple tests to rule out infection. Of course with Scarlett’s history the ER doctor completed understood my concerns. I have to say Scarlett had very good care in our local ER. I really felt the provider listened to me. Scarlett is not the typical case. Her labs that measure inflammation were 4x higher than they were 5 days ago and her wbc is up. Which could be because she’s either having a flare, an infection is brewing, or stress from her surgery.
At this point I highly suspect a lupus flare. Usually her flares last 2 days and she’s better, but this flare is going on 4+days. But it’s still important to rule out any possible infections. Scarlett definitely keeps us on our toes. It’s hard to relax when she’s having a flare especially with her history of pulmonary hemorrhage. I have all the tools to monitor her vital signs at home. Her O2 sats have been good. She seems to be getting a little better. She finally does not have a fever tonight and she is in better spirits. Her lupus is definitely not keeping her from being a kid.
Scarlett knows she has lupus and in her own words tonight she said “my lupus is not keeping me from getting big.” That’s right my sweet girl. Keep the positive attitude and hopefully your flares get fewer. Scarlett’s lupus is definitely not keeping her down.
We were recently in Fargo and saw Scarlett’s rheumatologist. I have to take a minute and rave about her doctors, especially her two main doctors that rotate seeing her. I used to work in surgery and now behavioral health. I feel comfortable interpreting most of her lab work as they come in, however I have to say immunology is not my specialty. Scarlett’s rheumatologist and nephrologist are her main doctors and has been absolutely amazing answering my questions and making sure I understand her disease process completely. I am also aware that I can sometimes become obsessive over every test that comes back. Her latest lab work has been reassuring. Her hemoglobin is up, which is very good as many with lupus suffer from anemia. Her platelets were low which could be the disease process or her medication. She also had her B and T cell counts done which were abnormal. One of the medications from the PICU that was crucial in saving her life, rituximab also robbed her from all her B cells. Her doctor has explained to me that these cells are responsible for making memory in her immune system. The good news is that they are higher than when she was in the PICU which hopefully means her immune system is trying to make memories. She is still very immunocompromised.
This winter Scarlett was sick a lot. In December she had a round of antibiotics and steroids for pneumonia. In January she had a double ear infection which would not go away. Over the next few months she required three different antibiotics to cure it. Every time she was placed back on an antibiotic I literally got heart palpitations. As we already know she is developing antibiotic resistance. My husband who usually gives Scarlett her morning medications missed one dose of her clarithromycin due to a miscommunication about how many days she had to be on it and I literally lost it. I yelled at him. I felt like a terrible parent and wife over ONE missed dose of an antibiotic. I cried as I felt like we were contributing to her resistance.
Scarlett is now scheduled to get PE tubes placed and her adenoids out soon. Her audiogram showed her ear drum movement is minimal meaning she probably still has fluid even after her infection has cleared. Hopefully this procedure will keep Scarlett from having to be on so many antibiotics in the future. We have to save her antibiotic susceptibility for when she really needs it. She has a large team of doctors including her rheumatologist, nephrologist, pulmonologist, primary, and now an ENT doctor. They all agree it’s the best for her with her compromised immune system.
We still plan on putting Scarlett in preschool next year where she will be exposed to more germs and viruses. Our kids go to a country school and right now there are only 13 kids in each preschool class which really is pretty minimal. Next year will be quite the test run, but I really do not want her pulled from school. Several other lupus families I now know of have had to home school their child due to them catching too many bugs at school. I really want Scarlett to have normal social experiences. I think her being able to go to a small school and having her big sister Stella there to help her clean her hands will be a big help. Hopefully her upcoming surgery will help eliminate her having to be on so many antibiotics and help keep her healthy. After all that is the main goal of all her doctors and us.
April 1st of 2018 was Easter Sunday. It was only the second time I left Scarlett’s side while she was still in the PICU and Sheldon stayed with her. I came home to attend a hockey fundraiser for Scarlett and to see my other two children that I was really missing. Sheldon called me late on Easter Sunday and told me Scarlett was not doing well. She had another large pulmonary hemorrhage and had to be placed back on the oscillator for the third time. Thankfully, this would be the last pulmonary hemorrhage caused by her lupus as her doctors decided to start Rituximab for the vasculitis in her lungs. We were told that there was no evidence of it’s efficacy in children as it had usually only been used in adults. There was a lot of hope in this medication helping her as we were running out of options. Thankfully it did.
Tonight, I was giving Scarlett a bath and her baby brother Will was in the tub with her. Scarlett is so sweet when it comes to Will, they really have a special bond. She was giving him kisses and said she remembered Will in “her hospital.” She told me that she woke up, Will and I were there and that we never left her. I told her yes mommy was always there and when she woke up Will was waiting to meet her. Scarlett got real quiet for a few moments and put her head down. I asked her what was wrong. She said it made her really sad to see me cry. She asked me why I was crying when she was in the hospital. I can only think of one time I was very visibly upset in front of Scarlett when she was awake. When she developed endocarditis in May and showered clots into her lungs, at that time she was completely off of sedation. Blood was coming from her trach and Scarlett had a panicked look in her eye as she was deteriorating quickly. She was then placed back on the oscillator for the fourth and last time. I know she remembers it because she has told me before she was scared when it happened.
Last week we were in Fargo for a fundraiser for the Children’s Miracle Network. While we were there I saw my friend Janna. I met Janna when Scarlett was in the PICU and Janna’s little boy was in the hospital battling leukemia. He is currently doing well (yay Henrik!). She is the only friend I made outside of Sanford staff as I never really strayed too far from Scarlett’s room. Last week she gave Scarlett a special doll she made for her. After her son’s ordeal she started to make dolls to help children cope and be more comfortable with the new changes to their bodies and learn about their illness. She a nurse herself and is very knowledgeable about the medical aspect. Her dolls have central lines, ports, tracheotomies, g-tubes, colostomies, and more tailored to each child, which is completely amazing! Scarlett has been utterly fascinated by this doll and of course named her Scarlett. Scarlett’s doll has scars, which we call angel marks everywhere that Scarlett does. She has a syringe and pretends to draw her blood. I hope that practicing on her doll helps Scarlett with her PTSD. Scarlett has to get labs drawn at least every two months and it has become more and more traumatic for her. I wish I could take all the pokes for her.
Scarlett continues to amaze us all with her fighting spirit. She takes her medications twice a day without much complaint. She loves to practice being a doctor on her siblings and now her Scarlett doll. I hope she will remember less of the bad from her PICU stay, and maybe just hold onto the good memories of her friends at “her hospital.”
Late last summer, Scarlett was receiving what would be her last chemotherapy to treat her lupus when Hillery walked into our hospital room and asked me if I was interested in Scarlett being the regional Children’s Miracle Network Champion. I already knew that her doctor in the PICU had nominated her months before, but did not yet know the outcome. I will never forget Dr. Mauriello telling me that he still believed Scarlett was a miracle as she was placed back on the oscillator for the fourth time and was still holding her as a nomination even when things were not in her favor.
Yesterday, Scarlett was recognized at a fundraising event, Sweet Miracles. Our family had the opportunity to make a speech to the 200+ in the audience. I kept it short and sweet. However, afterwards all I could think of was the oscillator… when Scarlett went into cardiac arrest on 2/21/18 at Trinity Hospital in Minot, efforts to stabilize her on a conventional ventilator were quickly aborted when she became extremely hypoxic when the code team tried to place her on the ventilator. Initially Sheldon was going to fly with her to Sanford Children’s as I was 7 months pregnant, but when she could not tolerate the vent, the decision was made that she would fly out with four flight nurses taking turns manually bagging her until they got to the PICU. When Scarlett arrived in Fargo she still could not tolerate a regular ventilator and had to be placed on the oscillator. I have had several people ask me what the oscillator is. It is a ventilator that delivers about 300 breaths per minute. It is loud. It was my nemesis. As long as Scarlett was on it, she was critical. She was on the oscillator for 43 days which I was told is a record for Sanford Children’s.
On Scarlett’s oscillator, there was a sticker that stated “purchased with funds from the Children’s Miracle Network.” At the time I did not know much about the Children’s Miracle Network except that their sticker was on a piece of medical equipment that helped save Scarlett’s life. I am forever grateful to those that donate to CMN Hospitals. After spending 118 days in the PICU I saw many other kids come and go. Not every child gets to leave the hospital with their family. Our family is also forever grateful to the PICU intensivists, specialty MDs, nurses, respiratory therapists, physical therapists, OT, and many more. Without those involved in her care, she wouldn’t be here today raising awareness for lupus and money directly helping kids in our state. Scarlett is our ND Champion. Despite everything she has been through and the future struggles ahead for her I still believe that everything must happen for a reason. There is definitely a plan for Scarlett’s life that I don’t know about yet. Keep going my sweet girl!
On March 8, 2018 we received news that Scarlett had Systemic Lupus Erythematosus. After being told there were no cancer cells in Scarlett’s bone marrow we were anxiously waiting for answers and hoping for the best possible outcome. I will never forget Dr. Syverson and Mauriello walking with us to the staff only area where the doctors’ room was to privately talk about her diagnosis. We agreed to have a kidney biopsy which did confirm she had class 5 lupus nephritis. At this point, Scarlett was still on the oscillator and continued to have a poor chance of survival.
I have had several people ask me if I was angry that she was initially misdiagnosed with JMML. I have to definitely say no. Lupus is known as the great mimicker. I have read other lupus blogs that have said it initially did look like cancer for them as well. Scarlett’s oncologists also said to us that her presentation was not typical for JMML because her spleen was not enlarged, and only her lab results met the criteria. Scarlett did have 5 days of chemotherapy for leukemia which she did seem to respond to as the chemotherapy did suppress her immune system and eventually she had cyclophosphamide chemotherapy to treat her lupus.
Scarlett’s lupus diagnosis changed everything. She was still critical with a very guarded prognosis, but it gave us hope. Lupus could be treated and a plan was put in place to treat her with cyclophosphamide chemotherapy and high dose steroids. Eventually she was also treated with rituximab and did respond to treatment. Scarlett made a recovery that many thought would be impossible. Now we are facing the long term aspects of having a child with lupus.
Scarlett is constantly catching every little bug going around. We are hoping that next year when she’s farther out from her chemo that it won’t be so bad, but she will still need to be on mycophenolate which suppresses her immune system. Getting a definitive answer as to what she was up against was a turning point for us. Pulmonary hemorrhage in lupus is very rare and there are no published case studies in this happening in a child as young as Scarlett.
My hope for Scarlett after receiving her diagnosis is that she’s able to live a long fulfilling life. She is already loved more than words could express. Her story has touched so many people. We have to have faith that Scarlett will make it to adulthood and have normal life experiences. The day she graduates high school, college, etc. there will be no one bawling more in the audience than me. Scarlett is a little lupus warrior. She has now been living one year diagnosed with lupus but I just believe she will continue to amaze us for many more to come.
Thanks to Facebook and a personal timeline we kept of Scarlett’s hospital stay. I am very aware that one year ago today was probably the worst night Scarlett had in the PICU. Which says a lot as she had many bad days. I can honestly remember like it was yesterday. The crash cart was outside her hospital room 928 for almost 18 hours. We were discussing flying her out for ECMO as a last resort to save her life. It’s never good to have 10 nurses and the PICU Intensivist in your room all night long. Amazingly, in the 24 hours prior to Scarlett having this large pulmonary hemorrhage her physician in the PICU had a very brilliant plan that probably saved her brain function. Her doctor gave Scarlett extra blood than would normally be expected to get her hemoglobin high so that in the event her O2 sats would drop her heart would keep pumping oxygen rich blood to her vital organs and brain. I sat at the edge of her bed surrounded by staff working fiercely on Scarlett. I watched as blood just kept emanating from her ET tube. Her O2 sats dropped twice into the 50s and hung in the 60s for awhile, but her pulse remained strong. I don’t believe in coincidences as only one hour earlier I was reading a scripture my dad had marked in the bible that my husband had brought from home. Luke 8:50 says. “Don’t be afraid, only believe and she shall be made well.” I think I repeated this over 50 times that night. I absolutely believe that prayer helped save Scarlett, but I also know that everyone that took care of her were supposed to. She had the most amazing nurses. There were four PICU Intensivists that rotated with her and I can whole heartedly say that each one had a hand in saving her life. I look at her now and I am completely amazed that she is cognitively intact. I think that is the biggest miracle of all. Not only did she survive being in critical condition for three months, but she remembers her life before, during, and after her hospital stay. She is one intelligent little girl. She wants to be a “baby doctor” when she grows up. I feel guilty that deep down I’m not sure I want her to do anything stressful, but that’s not up to me. Sometimes I don’t think that anything could stop Scarlett. She is the most determined 4 year old I know. I had a moment tonight when I was so frustrated that she was trying to debate me about her bed time, then I became very aware of the fact that she gave me a very intelligent 4 year old reason of why she should stay up late. The “one year ago today” reminds me of how fortunate we are to have our spunky Scarlett still with us today and thriving!