Our month of January was pretty quiet...no infections, fever or illness. Cory spent his days going to therapy twice a day and having speech therapy three times a week. His counts dropped and rebounded quickly and we were able to finally come home for some down time. The time at home flew by so fast and it felt so good, we didn't want to come back but back we came. We had our usual bone marrow and lumbar puncture procedures and they came back clean....Praise the Lord!
February, 2011
We checked back into the hospital and started our treatment. Cory handled this round of chemo like all the others. Cory has been such a good patient throughout our journey. Granted, he didn't really know anything the first month because he was in PICU and sedated but after that, he has taken everything in stride and didn't cry or throw a tantrum. I am in awe of him because I don't know if I could be that easy going. Yes, he does get depressed when he is attached to his IV pole with tubing running everywhere but after awhile he puts a smile on his face, unplugs it and pushes it where he wants to go.
In the early morning of Tuesday, February 8, Cory developed a fever, 102.5. We had a floater, a nurse that fills in where ever she is needed throughout the hospital, that morning and apparently she didn't realize the seriousness of a cancer patient with a fever. It was 1:30 in the morning and she told me labs would not be done until 2:00. Around 2:00, she finally did labs and sent them off. We then received platelets and finally at 5:20, Cory received the first round of antibiotics.
Let me explain the seriousness of a fever. When Cory receives his chemo treatment, it stops his bone marrow from producing white and red blood cells and platelets. Since that is not being produced, he does not have an immune system. We all know that white cells attack any type of infection and fever usually signals that some type of infection is taking hold. Protocol here on the floor is when a patients fever goes over 100.4 twice in a short time frame, it is assumed an infection is present. The patient is hooked up to fluids and antibiotics. Labs are run every morning to watch the infection. Our nurses know the importance and move like lightening to have the patient taken care of.
We had battled Cory's temp for 24 hours, it was consistently 101 to 103. The labs came back positive on Wednesday and it showed some type of bacterial infection in his red line. We continued to give Cory antibiotics and run labs. After the initial lab came back positive, the following labs came back negative. Since he was still running fever but the labs came back negative, the doctors thought he had a fungal infection. He was given a different anti-fungal in hopes it would knock it out. He was still running fever but not near as high as it was. He was running anywhere from 99 to 102, with the 102 spikes coming farther apart. His immune system finally kicked in and started to produce white blood cells.
On Sunday, Cory's fever finally broke. Praise God and your prayers for that. Since his fever broke so quickly after the new anti-fungal, they didn't think he had a fungal infection. They scheduled a CT scan and an echo cardiogram to see if Cory's white cells were attacking anything and if any type of fungus, virus or bacteria had attached to his heart. Both tests came back negative...Praise God! So, since negative on the bacterial and no new fungal infection, they think the long period of fevers might have been caused by either a cold or the flu. I am just glad the fevers broke...
That illness had been a setback for him. He had lost the sparkle in his eye because he had been hooked up to his dreaded IV pole again. It was harder this time around because he sees more tubing and fluid bags and he hears the docs saying it will be several days before he will be cut loose from the pole. He had backtracked in his therapy as well. He had just regained the use in his wrist, being able to move it side to side but we will work and get it back again. I had made the decision back in January not to go home again until we finished treatments. I had wanted to stay here and get them finished because it was so hard to pack up and leave home to come back here. After this illness, it was decided by myself, the doctors and therapists that Cory needed to go home. He needed out of here, a little bit of freedom...and freedom we had.
February 20, 2010
We celebrated Cory's birthday here...Star Wars! I decided that it would be a celebration of his birthday and of his life. Cory had been through so much in the past several months that we needed to have some happy times. So, we started the celebration Saturday morning. I had told the Floor Nurse Manager that I wanted to let the PICU nurses know about the party so they could come and visit Cory and she said she would be able to do that. I decorated his door and room with Star Wars stuff and we had sandwiches, chips, cupcakes and cookies. We had some of the nurses come up to visit and they were amazed with the progress Cory made in the past few months.
On Sunday, we had lots of visitors on his real birthday. We had family and friends to come spend the day with Cory. Dr. Ryan and Dr. Tiffany came and dropped off presents and some of the nurses brought presents as well. But, the best present Cory was given that day was to be disconnected from his IV's for the afternoon. Cory enjoyed his day and received lots of Star Wars stuff. By the end of the day, we were all tired, full of sweets and very, very happy.
Monday, we were given the news that we would be able to go home for a break. Cory was so happy, he did his little happy dance while he was doing therapy with Miss Danielle. When we woke up Tuesday morning, we slowly started packing our stuff up to come home. After a wild trip across town to pick up Cory's meds and a disastrous visit to the pharmacy, we had faxed the prescriptions in around lunch and at 4:30 they still weren't ready...grrrrr, we finally made the trip back to EC for several days break...Oh how that exit sign to EC looked so good.