We left Logan at 6:03 am this morning
We arrived with enough time to play.
Erin is quite the dancer
Watching the fish in the fish tank.
Time for the CT scan. This was an ordeal. We tried to do it without sedation because we were told she couldn't be sedated for the CT scan since she was later being sedated for her bone marrow aspirate. After 2 hours and 15 minutes of waiting we ended up getting an okay from the anesthesiologist that she could have a mild sedative Versed to calm her during the CT scan and still be able to be sedated later for the bone marrow aspirate.
CT scan results were clear.
She was being tested for a possible fungal infection. It does look though that one of her chemo drugs ARA-C could possibly be giving her some bronchial issues. I'll go into that later if it comes up again during our stay - right now we're not concerned about it, but after this round of chemo we'll know more about if it's caused her issues.
"The Big O"
That's what we call the CT scanner.
We were rushed to the Hematology Clinic by 10:00 am (an hour late) and they whisked us in and out of here so that we could make it to the RTU (Rapid Transit Unit) for the bone marrow aspirate and spinal tap appointment at 10:30 am.
Here Erin is wearing a hat
that she choose off of the hat tree in the clinic.
It was a treat to run into Amanda, a facebook friend.
We are part of a group that is made up of moms in Utah that have cancer fighting kids.
Her daughter Amelia who has ALL (Leukemia) was also getting ready for a spinal tap.
Erin did really well with her sedation.
When she woke up she immediately wanted the orange Popsicle we had promised her.
It is so hard to have a 2 year old fast all morning.
Her spinal tap fluid is clear. They drew it out, looked at it under a microscope and found no sign of leukemia cells. Since day one we have not found leukemia cells in her spinal fluid. After they took the spinal fluid they shot a dose of her chemotherapy drug ARA-C into her spinal fluid. Her chemotherapy treatments are normally strong, but they are not strong enough to work in her spinal fluid, so that is why they did a direct shot into her spinal fluid. She also had a dose of Zofran given while she was asleep so that the ARA-C wouldn't make her nauseous.
The bone marrow results will come on Monday/Tuesday. Last time she had 0% Leukemia cells in her bone marrow. She had 80%-90% Leukemia cells in her bone marrow when she was diagnosed. This means that she is in remission for her Leukemia, but we still finish out all the treatments so that it hopefully will not come back.
She was a basket case by the time we go her situated in her room in ICS (room #4414). She was so tired and cranky and hungry, but I couldn't do anything to make her happy. I decided that now was the time to get her dressing changed on her central line since she was already crying and flailing. Below is a picture of her central line (Broviac) and it's two lines. She wasn't happy that I took this picture, but I wanted a picture of it for her to see when she grows older and doesn't remember it.
I ended up just getting her to sleep before we could feed her because she was just so worn out. I napped beside her for 15 minutes and then I went to the car and brought up 2 wagon fulls of the stuff we brought (toys, books, clothes, etc.)
She woke up at 2:45 pm and I was informed that she needed to go downstairs to get an EKG. The EKG is to monitor her heart while she does these intense chemotherapy treatments. The EKG results came back normal, that is such a relief. She got to ride in a wheelchair to Cardiology. Prince Charming and Cinderella came along (in her hands).
After the EKG we spent a few minutes watching the carnival set near the south entrance to Primary Children's.
It is so cool! A must see!
We got upstairs and I had a good 30 minute chat with Dr. Barnett. I just think so highly of him! I will give the details of our chat in another post. Erin watched a Strawberry Shortcake movie 3 times and we ordered dinner (cheese pizza, french fries, & fruit snacks).
We started our day 13 hours ago and we're finally getting a chance to sit and breath. Erin is being filled up with fluids in preparation to starting her first dose of chemotherapy. We have a wonderful nurse (Marie) and techs (Tommy & Ana) today and they have taken good care of us. Coming back to ICS was like coming back home. It's comforting knowing that we know so many of the nurses and techs so well (I had to tease nurse Joyce that they are serving salmon tomorrow and I hoped she would come in our room to smell it). It is like a home here for us. I am thankful that it feels like a home away from home, even though it is a hospital.
We are in good hands. Thanks for checking in on us!