Oncology Follow-Up/CT Scan & Minor Surgery

On Tuesday Raylee had a follow-up appointment with oncology. These are not quick in-and-out doctor appointments like check ups, they last hours. First she has a CT scan which means she must drink about 24 ounces of contrast. This is a lot for her and any child at once. The last CT scan took Raylee hours to drink the contrast. Having her drink it is stressful as well because it expires in 3 hours so if the CT scan is not finished within 3 hours of drinking the contrast you have to start over. The contrast was a sinch this time! All because of that NG tube going in her nose to her belly. I injected most of it and she drank a cup full. An hour has to go by from when you start drinking the contrast, so this time when it was an hour she had the 24 ounces of contrast inside her. Also having this much fluid at once would normally kill Raylee's bladder and give her agonizing pain but this time around she has the catheder. So these extra tubes were used to her advantage and for a brief moment I was happy they were there. After the CT scan in Medical Imaging we go to the oncology clinic.

The CT Scan came back showing NO signs of abnormal tissues, NO signs of cancer NO signs of abnormal limph noids. This is such a relief. We weren't able to see the actual CT scan and we want to really bad to really believe the tumor is gone. The computer system that sends the CT images from the radiology department to oncology was down but Raylee's oncologist said we could see it another day this week (we have 2 other appointments this week on different days). Every time we have an oncology appointment they take urine samples. This is kinda hard because Raylee is in diapers. We were potty training her prior to her diagnosis but she struggled. When she as diagnosed we decided to wait for potty training and then we understood why Raylee had such a difficult time with it. To collect urine from a child who wears diapers the nurse places cotton balls inside the diaper. This means you have to wait and wait for them to pee enough into stupid cotton balls. This time however since Raylee has a catheder this was quite simple. Anyway I always wondered why they collect urine. It is because Neuroblastoma cells create a chemical that can be traced in the urine. Raylee still had this chemical in hers. It isn't something to be alarmed about-her oncologist said it often takes months for this chemical to leave the body after the cancer is removed. During all her follow-up appointments they will check the urine for this chemical. The oncologist also said it can take at least 3 months from the last Chemotherapy treatment for the bone marrow to be back to normal. Our next step in Raylee's recovery is to have the Broviac removed and an appointment with urology to find out what's going on with Raylee's bladder. I tried to schedule an appointment with urology and they turned me away saying general surgery could take care of her. I explained to them we were referred to them by Raylee's oncologist not her surgeon and they still wouldn't schedule an appointment and the individual became really rude to me on the phone. This was really frustrating but her oncologist took care of it. She called them and chewed them out. She wasn't happy and I don't know what she said to them but she said they will call you with an appointment and if it isn't within two day let me know and I will call them again and chew them out again. I love her oncologist-she doesn't mess around or put up with anything that doesn't go her way! Sure enough urology called with an appointment and this time they were super nice to me. Raylee can have the NG tube removed because she is eating and drinking really well on her own. The nurse came in to remove it and Raylee freaked out! She does not want it out! She screamed and cried and it was decided it would be removed on Wednesday when the Broviac is removed because Raylee will be sedated. One appointment down for this week two more to go.

Surgery.......................

On Wednesday Raylee had the Broviac or central line removed. This is the tube that goes into her chest to her heart. Since she isn't receiving any more Chemo she no longer needs this line. It is a quick minor surgery to remove the line. For a child, it is a surgical procedure because the line goes to the heart it could be life threatening if the patient moves during removal. This meant Raylee was sedated once again. This is the 7th time (and possibly not the last) sedation she has had since 5/24/11. The surgery was quick and perfect because the surgeon who removed the tumor also removed the Broviac. We were happy when told Dr. B was going to be Raylee's surgeon again. We really like him. When Raylee woke from the surgery she had a difficult time coming out of the anesthesia. She was like a demon child who was possessed; screaming, kicking, trying to run away, making loud awful screams, hitting, you name it and she was doing it. One of the hospital staff felt so bad for Raylee she gave Raylee a stuffed animal and Raylee through it at her while screaming at the top of her lungs. Then she wanted the stuffed animal so the lady handed it to her and Raylee hugged it and loved it for about 10 seconds and through it all her again as hard ad she could! It was quite embarrassing but what do you do? My child is tired of nurses, the hospital, medicines, and people in her face trying to make her feel better. She is only 3 and can't express her anger, fear, and anxiety well so now she screams and hits. She is very good at screaming! This was a really bad day and felt like hell. I do not wish for anyone's child to go through what Raylee did today; or for any parents either. I was pretty sure Jerry and I were both going to have a nervous breakdown by the end of the day. We had to force her in her car seat because she didn't want to leave and she screaed all the way home. I am sure if you were in the car next to us you probably could hear her. I decided I need a pair of ear plugs because they are stil ringing. Two appointments down for the week, one more to go.....it feels like this week will never end :(

To make matters worse Raylee isn't sleeping well. She falls asleep around 2 am, moans and groans in her sleep, wakes up crying a lot, and will not sleep in her bed. She would rather sleep on the floor. I feel bad for her and lack the patience needed to cope with all this.....it's either lack of coping or lack of sleep. We kinda think she is having withdrawals from all those damn narcotics she was on for pain....glad we are done with those and that they are long gone. I hated having those meds around.

To make even more matters worse, Jorja almost burnt our kitchen down the other day. She was using the microwave to cook Mac 'n Cheese and forgot to add water. Black smoke went everywhere pouring out of the microwave and she is saying 'mom, mom' in a way that didn't reflect an emergency was taking place nor did she stop the microwave. I was in another room saying 'what?' She says, 'ummmmm I need help with the microwave.' By this time I could smell the smoke and ran into the kitchen and opened the microwave door. Our kitchen still smells of smoke. It is a blessing the noodles did not catch fire, the microwave didn't catch fire, or our house. The noodles were black and almost a dust. The little microwaveable container the Mac 'n Cheese comes in was disintegrated. Jorja can no longer use the microwave by herself and she had a tough lesson on how to call for help :) We do not need to experience our house on fire, especially not now.