Wednesday, January 8, 2014
Dr. Salihi left me a voice mail saying that the results of the blood work came back and they weren't good. I called Nick right away to tell him the news. Right after I got off the phone with Nick, Nick's mom, Debbie (Nana) called me and said that Dr. Salihi told her that we need to bring Jax in to his office to see him right away. Jaxsen was at daycare at the time, but Nick left work right away to pick him up. The boys then met Nana at their house and drove together to talk with Dr. Salihi at his office. They were told that Jaxsen's results were abnormal and that it was possible he had either severe anemia or Leukemia. Dr. Salihi said that he wanted us to go to Sinai hospital immediately for further testing and to get an official diagnosis. Nick, Jax, Nana, and I all drove to Sinai together.
When we got to Sinai, we met a few nurses who helped draw some blood from Jaxsen's finger and insert an IV into his right arm. He told the nurse that his favorite color was green, so she came back with a bright green bandage to cover up the IV on his arm. Jaxsen wasn't happy to have the IV or the bandage on his arm so Nana, Nick, and I all wrapped green bandages around our arms too. That made him feel a little better. We also saw another little boy who was getting his blood drawn, and he had the same exact blue shirt on! It had little cars all over the front. Both boys got a kick out of it.
While we were waiting to hear back from the hematologist about the results from the blood lab, we spent time in the play area. We did puzzles, watched Dora, colored with crayons, and built towers with poker chips. The nurses in this area were very accommodating and considerate. One nurse gave Jax a brand new pack of Matchbox cars and another nurse overheard him say that he liked rocket ships, so she gave him a large coloring book about space. Jax also got to keep the Dinosaurs coloring book and pack of colored pencils that he used in the playroom. When Jaxsen was playing with a toy cash register, he frantically jumped back and let out high-pitched scream. Nana, Nick, and I all jumped up to see what was wrong, and then burst out in laughter when we saw that there was a little spider on the counter in front of the register! Nana picked Jax up and I grabbed two cups to capture the spider. Jax started laughing when he saw that the spider was captured inside the cup, but he still didn't want to look at it. After about an hour, and after talking to numerous doctors and nurses, Dr. Fixler, our oncologist, sat us down in the playroom and told us that he had reason to believe that there could be Leukemia cells in Jaxsen's blood. We were all devastated. He told us that we would be admitted into the hospital for further tests.
We went up to the third floor of the Children's Hospital which is where the Pediatric Oncology unit is. When we walked into our room, we were shocked to see some goodies waiting for Jax on his hospital bed. He had a few more cars, a puppy dog beanie baby (which Jax named Clifford), a pair of Cars pajamas from the Casey Cares Foundation, and a small Jake and the Neverland Pirates coloring book. He also had a large blue fireman blanket that someone made for the children in the hospital. Needless to say, we were beyond grateful. The social worker, Mary, also gave us a bag of goodies that was prepared by the Friends school of Baltimore. Inside was a little note, some paper and pens, a big box of tissues, some toothbrushes and toothpaste, and chapstick. I teared up after opening the goodie bag and reading the note because it was such a thoughtful thing to do. The note explained that the students prepared the bag as part of a community service project in honor of a young person who went through a similar experience as Jax. I immediately made a mental note to send the Friends School a thank you note and to let them know that their kind gesture was definitely appreciated.
The only procedure that Jax had done on Wednesday evening was a blood infusion. He received the blood in two parts because it was his first infusion and they didn't want him to get a reaction. They monitored Jax every 15 minutes for the first hour, and then every hour throughout the night. He had a rough time adjusting at first, but once Jax was asleep, he stayed asleep. I, however, woke up every hour in order to check in with the nurse to see how Jax was doing. Thankfully, Jaxsen did not get a fever and his body accepted the blood.
Jaxsen woke up around 4am and started vomiting. The nurse came in right away to make sure he was okay and to help us give him a sponge bath. When the nurse was cleaning the back of Jaxsen's legs, she said, "Don't fart on me, Jax!" Jax immediately farted and then started laughing. Thankfully the nurse thought it was funny too! He went back to sleep after he was cleaned up and then woke up around 8:30am. We were very excited when we woke up because we knew that we were going home later that day! We were originally scheduled to go home on Friday the 17th, but Jax was doing so well that we were able to go home 4 days early. We spent the morning lounging in our room. The nurse came in around 11am to give Jax his 3rd dose of chemo. It took about an hour for the chemo to be infused into Jaxsen's port. Immediately after the chemo infusion was complete, Jax took a nap. This was convenient, because the nurse needed to monitor Jax to see if he had any reactions to the treatment. We were told that as soon as Jax woke up we would be able to go home. Nick and I quickly packed everything up and then Nick took all of our bags down to the car. I talked to Mary, the social worker, during this time and she told me that she was so happy to see that Nick and I still held Jax up to certain behavioral expectations and she then complimented us on co-parenting so well. What a great feeling! As soon as Jax woke up, we called the nurse in to see if we were able to leave. She ended up giving him a flu shot, which Jax HATED. He got more upset over the flu shot than he did for any other procedure. We wanted to cheer Jax up, so we gave him the option of either going home or playing in the playroom. He chose the playroom, so we headed there for one last trip. After spending some time there, we headed back to our room to grab our jackets. We put Jaxsen's cape on him and then watched as he ran up and down the hallway of the Pediatric Oncology floor. The nurses thought he was so adorable (for good reason). We said our goodbyes and then made our way downstairs. We left the hospital around 6pm. We were so thankful for all of the wonderful nurses, doctors, and other staff members we met. Jax felt right at home during our stay and we know that the awesome members of Sinai made that possible!
