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The Roller Coaster

Julia finished week 2 of chemo without incident. Every day, we went to the clinic and Julia received her Topotecan. She was definitely feeling better with this cycle of chemo although her energy level started to wane towards the end of the week.

On Thursday, we all got a surprise when Julia’s brother, John and his fiancé Amanda came home a day early. Their wedding is the 20th and they are home for final preparation for the big day. Julia was so happy to see them and is especially excited since she is the flower girl.

Julia had a good start to the weekend. She spent time with her cousin, Laura on Saturday night. Julia slept late on Sunday, but when she woke up she was asking about going to the Ronald McDonald Camp Reunion at the Tyler Arboretum – “I don’t want to miss it. I will see all my friends from camp”. Julia was feeling well and she has missed so many things that we decided to take her. We only stayed for a short time as Julia quickly tired, but she enjoyed making a kite and some sand art, and especially enjoyed seeing some of her camp buddies from the Mimosa cabin. As we walked up the hill to the car, I noticed Julia got out of breath, reminding me of her current condition and perhaps a sign that her counts had dropped.

Monday brought a trip to clinic for an exam and blood tests. Sure enough, Julia’s counts had dropped and her platelets were too low. As if on cue, Julia got a nosebleed as Dr. Julie was discussing the need for transfusion with us. Since both CHOP and the Red Cross were out of platelets, we had to wait while a bag of platelets in saline was prepared and brought to the clinic.

Today, Julia went back to clinic this morning to check her counts again. This time her hemoglobin was low and she would need red blood cells. Her ANC is also only 108 – the Neulasta from Saturday has not yet kicked in. We had to wait for the courier to bring the blood at 12:30 PM. Julia had started to work on some room decorations with Terry from Child Life, but soon got tired and decided to watch a movie. I ran out to get us lunch as Julia was “starving”, but when I got back she decided she didn’t like the cheese used for the grilled cheese sandwich and barely ate.

When the blood arrived, Julia went into the exam room to be accessed. As she entered the room, she complained that she was cold. With a check of her temperature, we discovered that she started to run a low fever. The transfusion was started and the nurses began to monitor her temperatures. The second temperature reading was 38.5 C, enough for admission to the hospital.

The next hour was a blur. Dr. Julie came over to examine Julia right away and explained to me that an ambulance would need to be called to transport Julia to CHOP. They finished Julia’s transfusion as we waited for the ambulance and then drew blood for a culture and started an IV antibiotic. I had to tell Julia about needing to go into the hospital –“But what about the wedding?!?” So here we are in Children’s Hospital. I am happy to report that Julia has not had a fever since we arrived. We have to hope and pray that the culture does not grow anything, the fever stays away and Julia’s counts rise. After all, as Julia told the nurse tonight “Saturday is a big day –I am going to be a flower girl and you know every wedding needs beautiful flowers”.

I couldn’t have said it better myself.

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