So sorry for the big break in updates! I have started a Facebook page that has updates every few days and accidentally forgot about this caring bridge! The page is called Katie's Fight!
The fourth round ended and Katie's numbers recovered well. She then began to get bad hip and leg pain. It got to a point after 3 days where she could not handle it and had to be taken into the hospital. They admitted her into the Bone Marrow Transplant Unit (BMT). There they began a very strong regiment of pain medicine around the clock. She still was shaking, crying, and occasionally screaming because the pain was so bad. They began running blood tests and scans of her body to see the cause. On the second day of being admitted they gave her a pain pump that she could push every 15 min as needed. This finally took a lot of the pain away, thankfully.
Seeing her in so much pain and not being able to do anything was the scariest thing I have ever seen. Because it was so hard, I had to have a few family friends come up to the hospital to be with me and her because I was so upset by seeing her in so much pain.
That same morning I noticed her stomach being distended, a lot. They did a bladder scan and noticed she was retaining fluid. They immediately put a catheter in to relieve her bladder and find the cause. The neurologist figured out it was the headache prevention medicine she started in January. The medicine was stopped and 4 days later they removed the catheter and she had full function of her bladder back!! (YAY)
All the tests they were doing for the leg pain were coming back negative. This was good and bad. Good because there was no sign of infection and bad because we still didn't know the cause of her pain. The doctor then decided to do a bone marrow biopsy to make sure the cancer had not spread to her bone marrow.
Waiting for these results was 2 very long emotional days of worry, nervousness, and hope for our family. The results came back negative, praise God! This was a huge weight taken off our families chests!
But... Still no answer on the leg pain. They finally ran an MRI of her lower legs and saw soft tissue swelling and bursitis in the joints. The neurologist came in and said by the looks of the MRI he was surprised to see her walking at all. She was able to walk a little and move on her own with little assistance. Her legs from her knees up began to swell a lot. We iced it around the clock to help.
The second week in the hospital Katie and I, Wende, were stuck in the hospital because of the snow Storm in Atlanta. We are thankful we were there and not at home in case something happened, BUT we were ready to bust out of there after 5 days in a tiny hospital room!!
She was able to eventually get off the pain pump and go home after 2 weeks in the hospital. They sent her home on strong pain medicines to help the continuous pain she was still experiencing. We never got a diagnosis or cause. To this day the doctors still say "we have never seen this, it's a mystery". She does physical therapy twice a week, which has been helping with the pain and swelling.
She is half way through her 5th and FINAL round of this regiment! This round has definitely been the toughest on her body. I now take her in everyday to clinic for antibiotics and lab checks. We went through a 6 day period where she needed either blood transfusions or platelets everyday.
She just got released from the hospital a few days ago from a planned admission for chemo. Her body tolerated it well for the most part. They did notice a small issue with her heart rate. They have stopped a few medicines that could be causing it, and have began regular EKG's to monitor it. Our family has a history of heart issues, so they are monitoring it closely. The cardiologists do not see anything alarming, but want to continually watch it.
The Goddard School of Roswell, where Katie and I taught for many years and where our niece Kinley attends school, made Katie their honorary hero for Pennies for Patients for the Leukemia and Lymphoma Society. This past Saturday they did a car wash to raise money for her medical bills. It was so inspiring to see all the people who are so generous and supportive! We love our Goddard family!!!!
Katie's last 2 days of chemo are the 27th and 28th of this month. She then will get a PET scan to see if she is in remission. This is the word we have waited so long to hear and are praying we hear it soon!!!
We want to congratulate Karl. He's a friend we met in clinic that also has ALL. We have enjoyed getting close to him and his wife, Lisa! Karl is now in maintenance, and can begin getting into a normal life and routine again! So proud of him!
Thank you for all your thoughts, prayers, and support. This has been a long journey and we are so excited we are getting closer to maintenance!