This picture is of Gracie in the recovery room after her EUA and subtenon carboplatin injections. Her eye is red and swollen, but we were expecting this. Little did we know how bad it would get, we weren't expecting that.
This picture was taken in the cancer clinic immediately prior to being transfered to the cancer inpatient unit. Her eyelids are obviously swollen, but not badly enough that it is right shut yet. It allows you to see that her eyeball itself is swollen. It kind of looks like a plastic bag bulging with fluid between her two swollen eyelids.
This picture is more of a closeup to show the fluid filled sclera (white part of the eye). It's bulging with fluid and is causing Gracie significant pain. She requires IV morphine every 2 hours to remain comfortable. I'm not sure she's ever fully comfortable but at least with the morphine she's not screaming in pain.
Gracie, Stephanie and I left home Wednesday night to come to Houston. Gracie needed to be at the hospital at 6AM Thursday for her scheduled EUA and carboplatin injections. The procedure took much longer than it should have. Dr. P came and spoke with us about 2 hours after the procedure was suppose to start. She explained that they had not received sufficient carboplatin. Gracie required subtenon injections of 2ml of carboplatin. We were surprised to learn that there would be an incision on the outside of the eye (through the conjunctiva). Apparently this is what subtenon injections mean. The drug is then injected under the outside layer of the eye. So basically the carboplatin is contained within the eye but not directly into the interior of the eye. We knew that it is never good to stick anything into the eye's interior for fear of the cancer spreading. Anyway, Gracie needed one stitch in her eye and Dr. P explained there may be a little bit of pain and some swelling and redness in the eye. She also gave us great news that the two tumors in Gracie's left eye had noticeable shrinkage from one month ago. Dr. P had used laser treatment on those tumors and was pleased with the progress being made there. Dr. P told us that there seemed to be few changes to the right eye (the bad eye) except that the vitrial seeds (the tumors floating in the eye) had been positioned differently during this exam and allowed her to get a better look at all of the tumors. She was pleased to report that some of the tumors were not as big on that eye as she had originally thought. Usually with the amount of vitrial seeding seen in Gracie there is at least one very large tumor on the eye. Gracie's tumors were not as big as expected however there were even more vitrial seeds then had originally been thought. So I guess that is good news (smaller tumors) and bad news (more vitrial seeds, which are hard to kill but less likely to spread). Dr. P told us that she still felt like Gracie has a 50% chance of saving her right eye.
So, after Gracie woke up, we could tell she was in a lot of pain. She had no desire to be there and just wanted to go home. They gave her some morphine in the recovery room and that helped with the pain. Eventually we left and Gracie was quite perky for lunch (which she insisted needed to be a sandwich and NOT a McDonald's hamburger). She even enjoyed drawing lions and suns in the waiting room of the cancer clinic for a time. Then she started getting fussy again and complained about her eye hurting. There were no available beds in the cancer unit but they found us a treatment room where we tried to pass time using the computer and caring for Gracie. She was in a lot of pain in her eye and there was a lot of swelling in the eye. Morphine seemed to be the biggest help in getting Gracie to calm down and rest.
Finally there was an opening on the cancer unit at 5 or 6PM. So we moved into a room with a real bed and TV. We found that the IV cancer treatments could be started at any time after the EUA, so they prepared Gracie for her treatments. This included lots of fluids and anti-nausea drugs (in addition to pain medication). As the night progressed her right eye continued to swell. We became more and more concerned with it. None of the nurses or residents that stopped by seemed to know anything about what to do or why it would do that. Several calls to Dr. P and others indicated that this was not an unheard of occurrence. Eventually though Gracie could hardly close her eye. The eye was bulging so much that it was coming out from under her eyelid even though her eye was closed. The on-call ophthalmologist was called in and explained that the swelling was not due to infection and just a reaction. It would likely go down over the next few days. We were to watch for swelling such that the eye could not be forced open or was hard to the touch. I tried to take some pictures of the eye but I am not sure that they do justice to what it looks like. This was pretty scary for Stephanie and I. It was also very painful for Gracie. We are happy to hear that it is not a serious problem but it is still hard to see her in such pain. The thing that I keep hoping is that this is an indication that the drugs is working and killing those visceral seeds. Since her eye does not seem to like the drugs, I hope that the cancer likes them even less.
Finally around 11:30PM, everything was ready for the chemotherapy. She received a carboplatin infusion for 1 hour, then a vincristine push (only took 3 or 4 minutes), then etoposide for another hour before 2 hours of additional fluids. I tried to stay up with her and monitor any changes to her condition. I kept dosing off but Gracie did really well. Everything went fine. She needed to use the bathroom quite often because of all the fluids that were going into her. It is always clear when she needs more morphine because she will point to her eye and tell you, "I don't like this" or "I want this better." One time she was crying and said, "I just want to get outta here."
I agreed with her but know that all of this will eventually help her. It is hard to see her in pain but I take comfort in knowing that she will soon be better. The cancer will soon be gone!
Thank you all for your prayers and love. We continue to be overwhelmed by the support we receive from family and friends.
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5 comments:
Gracie,
You are such a brave little girl! We praise God that your tumors are responding to the chemotherapy, this is GREAT news! You give my mommy and daddy strength and comfort. Sorry that you were in pain yesterday, I love morphine too!
xoxox
baby Noah
): I have been trying to get the crying face icon to paste onto this comment. But apparently I do not have the technology or know how. We cry for Grace when she is hurting and rejoice in the good news and pray that good news will continue to come. We are grateful for each day.
Dad (Smith)
Hey guys - so sorry to hear that Gracie is in so much pain, but so happy to hear the other news about the tumors. We keep praying for you all.
Love,
Lins
Dear James, Stephanie & Gracie,
WE think about you & pray for you all the time. I remember a year & half ago at a picnic at Rick & Sandra's house. I played ball with Gracie & helped her on the slippery slide. A couple of days later I was really stiff. (I had taken a fall in Airdrie a week or two before). Someone suggested I was of an age to give up playing ball. Now I am fairly well, but poor Gracie!
LOve, Jackie
We're so sorry that Gracie has been in pain, and we're so sorry for her parents who have had to witness her pain. We're grateful that you all have the courage to do these difficult things which will help Gracie be well. We love and pray for all of you, and we cry with you too.
Love, Mardi & Travis
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