Please continue to pray for sweet Callie! Here is an update from her caring bridges page updated last night.
June 28th
Callie had another good day today. She was able to have more awake time where she was peaceful today. She watched some of movie. She enjoyed her mommy blowing bubbles. She tried to pop several of them. She took a wagon ride for 10 minutes and she loved it! She has not had to be on oxygen in over 24 hours and she is maintaining good oxygen levels. She is still struggling with getting aggravated and being scared. Courtney asks specifically that you pray for peace.
Dr. Donahue visited Callie today and did find some fluid building up in Callie's head around her incision. He said he would check it again in the morning. If it is not better, they will have to put Callie under tomorrow to have a procedure to drain the fluid. He said this is a fairly routine procedure, but please pray that Callie's body will remove the fluid on it's own so she doesn't have to have this done. Callie's swallow test is also scheduled for tomorrow. However, if they have to tap Callie to drain the fluid the test will be moved to Thursday. Please continue to pray for this swallow test to be successful. Callie is so thirsty and hungry, but they will not give her any fluids or food unless she passes this test.
Today was an extremely hard day for Phil and Courtney as they met with Callie's team of doctors to discuss the near future for Callie. Here are some of the important facts from the meeting. There will be more details on tomorrow's post. Phil and Courtney have another meeting tomorrow to discuss more details.
Callie has Stage 3 Anaplastic Ependymoma brain cancer. This is the most aggressive form of this type of cancer. It looks like Callie will undergo radiation. The type of radiation has not been determined, but what we do know is it will be 5 days a week for 6 weeks. She will be under anesthesia for 3 hours a day while they do the radiation. Cooks only does one form of radiation. So, based on what is decided tomorrow, they may be moving Callie to Houston or Oklahoma City to receive the other form of radiation. The radiation will be very hard on Callie. There are many side effects and numerous risks with the radiation. These will be discussed tomorrow.
There is also a possibility for Callie to be a part of a clinical trial. This will involve 4 months of chemo after her radiation treatment is complete. This will also have many risks and side effects as well. This too will be discussed further in the meeting tomorrow.
The doctors said there are 4 criteria that they look at to determine the chances of survival with this type of cancer. 1) The child is over 10 years old. 2) The cancer is in stage 2. 3) The location of the cancer. The Posterior Fossa, where Callie's tumor was located, is the worst location. 4) 100% removal of the tumor. As you can see, Callie only meets one of the four criteria. Fortunately, the fact that 100% of Callie's tumor was removed is the most important criteria they look at. The doctors said there is a 40-45% chance that the cancer will return, and if it does it will be fatal. It usually returns in the first 2-3 years. If it doesn't, Callie will have to be monitored until she is 30 years old.
All of this information is extremely difficult to take in, but this is what the future will hold at this time. Courtney wanted me to let you know that all this could change if Callie's spinal tap is positive for cancer in her spine. If that happens, everything will be reevaluated. The doctors believe it is highly unlikely that the cancer did move to the spine, but it is a possibility. Please pray for this test. It will take place in about 10 days.
Please pray for Phil and Courtney to have wisdom as they begin to make these decisions for Callie. Tomorrow will be another difficult day as they look at the facts about radiation/chemo and what it will mean for Callie.
Finally, I want to share with you a cute little story about Carson. Courtney shared this with me, and I just had to share it.
Carson has not said anything about Callie since he went to visit her a few days ago. Well, a friend took Carson to the store to use his "debit card" I told you about in an earlier post. Here is the conversation Carson had with the cashier.
Carson: "Do you take debit cards?"
Cashier: "Yes."
Carson: "Will you take my Star Wars debit card? I got it at the hospital."
Cashier: "The hospital?"
Carson: "Yeah. My sister is in the hospital and she if very sick. They had to cut her brain open."
Cashier: "Well, I hope she gets better."
Carson: "She will! The doctors will make her all better!"
Oh the faith of a little child! HE will make her all better! We serve an Awesome God who is the Great Physician! He has and will continue to do miracles for Callie. It is hard to hear what the doctors say, but we know who is in control. My God is so Big, so Strong, and so Mighty! There's Nothing my God cannot do for Callie!
Please keep praying for this precious little girl, her family and the doctors.