I am sorry it has been so long since I have updated you. I wanted to post something fun, with lots of cute pictures. Unfortunately, it has been a rough week. Abby's head is hurting her again and she is having a lot of leg pain.
One side effect of chemo can be bone death. The chemo can cut off the blood supply to your bones and the area of bone basically dies (avascular necrosis). It is not good. Obviously. Because of Abby's pattern of leg pain, her doctors have ordered an MRI. So tomorrow Abby will be go under general anesthetic for an MRI.
The other possible cause of the leg pain is is nerve damage from the Vincristine. That is harder to diagnose but preferred to avascular necrosis........... I guess.
From Abby's point of view, hugs hurt again and "kids playing like kids" causes her a lot of pain. Because of her age, she doesn't understand that normal jostling that occurs when kids play doesn't hurt other kids, so she gets her feelings hurt when she thinks other kids are being mean to her.
Abby's doctor wants to try to get her off continuous morphine and only use it for breakthrough pain. It would be wonderful if we can do this but inconsistent use of narcotics maybe causing rebound headaches.
So is her intracranial pressure up??? I don't have a clue. I don't have a clue. Her headaches could be from her pressure going up again or rebound headaches from the narcotics or it could be a normal migraine. She has had a headache for 6 days straight. She is tired of hurting and I am tired of watching my baby hurt.
For now her doctors are asking us to give her her pain medicine as much as she needs it. Praise God!
A few nights ago Abby's doctor instructed us to go to ER. Between headaches and dehydration she needed to be seen by a physician. It took forever. We were there from 5 pm to 3 AM. They gave her a bag of IV fluids, which she needed but the rest was a complete waste of time. I have many friends who have lost their children. By remembering them I was able to "suck it up" and enjoy some one on one time with Abby. It is getting tougher to have a good attitude as we sit and wait and wait and wait. The sad truth of the matter is Abby handled the day much better than I did. Sad huh?
Two huge praises are that Abby is beginning to adjust to the medications for her pressure and her breathing is much better. Abby's energy level is beginning to improve. We have hope that she will learn to tolerate them much better. After 3 months of struggling, Abby's breathing is finally better. No snoring. No labored breathing.Now both of us are getting some much needed rest. Praise God.
So there are about a million things I could ask you to pray for but the main thing on my heart is a birthday party for Abby. Abby wants to have a birthday party with some of her friends. I would love to do that for her but I want her to be able to enjoy it. WIth Abby tired and hurting, it wouldn't be a bit of fun. I am praying for a window of pain free time, where we can do something special for her AND for a few flexible friends who could join us at a moments notice. Would you pray too?
We'll try to get some fun stuff and photos up in the coming days.