Maintenance Day 364: A Day at the Clinic

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

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

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

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

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

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

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