Haven wasn't happy that it wasn't pink and cool - so she and Kris are going out this weekend to get fabric and pink things to make it cool.
Today we spent the day at Johns Hopkins. We arrived at Oncology at 7am to ensure we were there in time to get the medicine and take her blood tests. We didn't know how much blood they were taking and Haven wasn't allowed to eat until after her CT Scan. This was the first of 3 rounds of blood withdrawl. LOTS and LOTS of tubes. She had to have her blood taken every 30 minutes.
This is Haven finishing up the 3rd round in the play room. By 9:15 we headed down to CT and sat until 11:30 before we got in. Keep in mind Haven had a lot of blood taken in the early morning and couldn't eat or drink anything. She was beginning to look very bad, pale and weak. Then they loaded her up with 6 syringes of contrast for the CT Scan of the head, neck, and abdomen.
We finished CT about 11:50 and headed straight for lunch. Haven ate and drank like crazy. Then it was immediately back to Oncology to talk with Haven's doctor and Child Life.
We reviewed everything about the procedure which I will put up here once I again review all the paperwork and books we received.
Child Life is extremely helpful and it's great to have them there. Not only do the play with the kids in the playroom and their rooms but Kris and I have had a really hard time trying to figure out how to talk to Haven about this. Kim from Child Life sat down with Haven and us to discuss the surgery and putting in the Hickman line. It was so cute. She had a book on the Hickman line that is written for kids. She went through everything with Haven so she would understand and Haven was very happy to know all of it.
I received a book on Bone Marrow Transplants in Children.
Now it was 2:30 and Haven was looking horrible. She had huge dark circles around her eyes, her speach was slurring, and she was wobbly while walking. We were pretty worried and even had her eat some candy - which she never has. Hoping that would put some sugar back in to her system. We got her in the wheel chair and headed to the car. Not even 30 seconds in the car and she was asleep. She was very worn out at home and laid on the couch for a few hours drinking fluids and eating. She is back to normal now and partying.
This is our last weekend home for a very long time so tonight we are partying and watching Haven TV. Tomorrow she will fix up her wheel chair and possibly see a movie. Then Sunday is Father's Day so she and Kris will spend the day together (not like they won't have many of those days coming up).
Thank you to everyone that keeps up on Haven. Thank you to everyone sending her gifts. Workbooks and coloring books are her favorite and she has a few to take to the hospital with her.