We are home!

Gracie did extremely well today. In the morning the swelling in her eye looked the same as last night. Gracie rested much of the morning. Then several volunteers showed up on the unit to do crafts with all of the kids. We told them that Gracie probably did not want to go but would ask her. As soon as Gracie heard that they were doing crafts she said, "Sure" and starting climbing out of bed. She went into the playroom and did not do any crafts but enjoyed her time with her mom. I stayed in the room because a doctor was suppose to come and tell us we could go. Right at 11AM Stephanie and Gracie came back but the doctor had not come. Stephanie went to heat up our lunch and while she was gone a doctor came in and talked to me, looked at Gracie and said he had no problem with us leaving. He just had to confirm with someone else and then we could go. So I packed everything up, we had lunch. Gracie started being quite perky and wanted to eat her breakfast and lunch. She was really talkative and pleasant as long as you did not touch her port. So then we waited and waited. They kept telling us they were waiting on a signature. So just after 3PM we finally left. The trip home was fairly uneventful except that Gracie's eye was getting noticeably less swollen! She was pain free and she could see from her right eye more and more. By the time she got home she was so excited to see her sisters and run around. It was great to see our little Gracie back to normal. Her eye is still very swollen and even more red, but looks much better than this morning.
She seems happy to be back in her home and in her bed. We are so thankful for her health and her resilience. We are especially grateful to see her without pain and back to her cheerful self!

Day 2- Round 2

Gracie's pain seems to be subsiding somewhat. She is still not herself and needs pain medication fairly regularly. Her right eye bothers her and she has a hard time opening it (but can open it if she works at it). She has learned to hate her eye drops as we need to pin her down and force her eyes open to give them. I know they are helping so we keep at it but it is not fun to see her hurt. It is always nice to see her being so pleasant with the nurses and doctors though. She explains to them how her eye hurts and also lets them know how to check her blood pressure and temperature.
Chemotherapy was started at about 9PM last night. Gracie slept through much of it. At 11PM she was disturbed and became quite perky. She wanted to watch movies and talk to everyone in sight. By midnight she was asleep again and slept quite well the rest of the night. They had finished the infusions prior to midnight and were just giving fluids. She had 1 hour of carboplatin and 1 hour of etoposide last night. After the etoposide they require 2 hours of fluid infusions. She remains attached to the infusion pump for the entire time she is admitted and so has a little bit of fluid being infused when not being given any drugs.
One of Dr. P's residents came and spoke with us yesterday. She confirmed that while Gracie's eye has swollen more than usually they are not terribly concerned about it as the swelling will subside and her eye will be fine. She also said that she thought the pain was largely due to the stitch on Gracie's eye. Apparently one stitch on the eye ball can be quite painful. The resident also mentioned that the swelling may get worse for a couple of days and may last for a week or so. We hope that the pain goes away much sooner than that.
All of Gracie's doctors and nurses have been excellent. We have truly been blessed. We continue to pray for Gracie's health and speedy recovery. We are grateful that the chemotherapy has been effective on reducing the tumors in Gracie's left eye and continue to pray that the drugs will effectively treat all of her cancer so that she can keep her right eye.
Thank you all for your concern and love. You continue to give us strength and hope.

Some Thoughts

Yesterday as I was waiting for Gracie during her EUA I was watching several different sets of parents who were also waiting for their children. Many of them had grandparents and other support people there. They were obviously very concerned and worried for their children. As time passed we watched their doctor come and update them all on how the procedure went. They all actually had the same doctor. Apparently their children were all getting tubes put in their ears. It's obviously a very short process because we saw at least 5 families come and go. It made me think about our nature as humans, about how our troubles seem so huge until something else comes along and makes you realize how very fortunate you are. If one of my children were to go under anesthesia and get tubes in their ears six months ago I would have stressed about my poor child. And now here I was, waiting to see how my daughter's cancer was responding to chemotherapy. Gracie's problems are so severe compared to getting tubes in ears, but looking at the contrast in severity between these families and my own I couldn't help but think how blessed we are as Gracie's condition could be so much worse. There are so many other conditions so much worse than retinoblastoma.

This thought was reinforced last night. I was in the hallway talking to our RN when another mom walked by. Our nurse (Vida) asked how her daughter was doing, and that mother hesitated before she answered. Vida clarified and asked if her daughter was comfortable. To that the mother answered yes. I walked away at this point but as I did I could hear the rest of their conversation. This mother was telling Vida that her daughter was a fighter. She was told two nights ago that her daugher wouldn't make it through the night and here she was still. As I walked into my room I felt so much sorrow for this other family and so grateful for all the blessings that we have. Our room is right across from the elevators and late last night our door was open and I saw this mother and her husband waiting for the elevator. Their arms were full of all of their daughters belongings. My heart broke and I wished I could do or say something to help this family. I just prayed for them. We are so truly blessed. I'm so grateful that Gracie is doing as well as she is and that it's only retinoblastoma that we're dealing with.

Thank you for being so supportive of us all. Not only our friends and family but also those who know our family. The hospitals where my mother works have been doing so much for her to enable her to spend so much time with us and that has been invaluable for us. We've been able to spend our time taking care of Grace and not worry about who was taking care of our other three children. We've known they were in good hands as they LOVE spending time with grandma. So thank you for the support you've given us, our parents, our siblings, and our children. My parents awoke this morning to a lawn full of get well signs and things for Gracie from a seminary class from church. That was so fun for all of our kids who've seen it so far and we look forward to showing it to Gracie. She's loved all the cards and gifts that she's been getting in the mail also. We appreciate all the moral support you all give us. It helps more than you could know.

Stephanie

Round 2- Day 1

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.

Gracie's new hat

Gracie's aunt sent her a few hats. They are pretty cute and Gracie thought it was comfortable enough to sleep in!

Retinoblasts

Gracie is doing wonderfully and now when her sisters tell her they get to go to school she enthusiastically tells them, "I get to go to the doctors!" We are looking forward to round two starting a week from today.
Our new friend Noah is going to start his chemotherapy treatments tomorrow. While we have never met Noah and his family we are excited for them to begin their treatments. It is good to be started on the path to being cancer-free. We admire their family's faith and courage throughout the past week.

Now for the original purpose of this post. Some have asked us why retinoblastoma is a childhood cancer and why it does not affect adults. I often wondered this myself and came across the answer in a book called "Childhood Cancer: A Parent's Guide to Solid Tumor Cancers" by Honna Janes Hodder & Nancy Keene. The Candlelighters (A childhood cancer foundation) sent it to us a week ago. It talks about how immature retinal cells are called retinoblasts. These cells grow in the fetus and early years of a child's life into the rods and cones found on the retina (rods and cones detect light and send signals to brain so that we can all see). Once the retinoblasts have formed mature rods and cones they lose the ability to multiply. It was in the division and multiplication that the mutations had occurred to start the tumors, so without this function there is little risk of a tumor growing.
I found a good explanation on the website for the Children's Hospital of Philadelphia (http://www.chop.edu/consumer/jsp/division/generic.jsp?id=78814). I will paste it below.

What is retinoblastoma?
Retinoblastoma is a rare cancer originating in the part of the eye called the retina. The retina is a thin layer of nerve tissue that coats the back of the eye and enables the eye to see. Most cases involve only one eye (unilateral), but both eyes may be involved (bilateral). If retinoblastoma spreads, it can spread to the lymph nodes, bones or the bone marrow. Rarely, it can involve the central nervous system (CNS).

Retinoblastoma is a malignant tumor composed of retinoblasts (immature baby cells) in the retina. These cells form the nerve tissues (rods and cones) at the back of the eye. Their job is to form images. The images are then transmitted by the optic nerve to the area of the brain responsible for sight.

Retinoblasts develop from a single cell during the early development of an infant in the womb. During gestation and early life, these cells are able to divide and multiply. This is the process that helps make enough cells to populate the retina. As children age, their cells undergo a process called differentiation and become mature rods and cones. The cells are no longer able to divide and multiply, which is why retinoblastoma occurs very rarely after the age of 5 years. Children may be born with retinoblastoma, but the disease is rarely diagnosed at birth.

We do not know what causes retinoblasts to turn into cancer cells but we do know that it in order for retinoblastoma to develop there must be a change or mutation in both copies (one from each parent) of a gene called RB1. What precisely triggers this change or mutation is not known.

Most children who begin treatment before the retinoblastoma has spread beyond the eye are cured. A major goal of treatment in children with retinoblastoma is preserving vision.

Great strides have been made in treating retinoblastoma in recent years; many children retain their vision and more than 95 percent of children with retinoblastoma can be cured.

Labs (They're SOOOOOO Frustrating!)

I'm getting frustrated to the supreme with labs all over the area. It seems that STAT orders are quite easy to misplace, and even have a tendency to disappear into thin air. Go figure. We still haven't found last Thursday's blood counts. So yesterday Gracie had to get her blood drawn again. The actual draw went quite well, but then they neglected to process it as stat. So today we finally got her counts. The platelets are 210 so she doesn't need to get her blood drawn again until we go to Houston for chemo!!! It's a good thing her counts weren't low because if she needs a transfusion we kind of need to know about it right away and not 2 days later - hence the STAT order. You'd think that labs would be more careful with such things because if her counts were critical that would be a fairly serious liable on the labs part. Wouldn't you say? (No we're not the suing type, but it's still has potentially serious legal consequences for the lab - I thought in the USA they were ultra cautious about such things for just that reason) Legal issues aside that could have very VERY serious medical complications for our little Grace, which is really my primary concern. However, no pokes for a week and a half, that's pretty exciting news. Of course that was only after we went for our flu shots this afternoon. Grace and all of her close contacts are highly encouraged to get the flu vaccine. Of course it has to be the dead vaccine so that meant shots for the whole family and not just the nasal spray. Our 1 year old son isn't able to get most of his 1 year vaccines as they are live and none of Gracie's close contacts are allowed to have any live vaccines for the next who knows how long. That's saying something if little miss hard core pro immunizations isn't vaccinating her own kids. Never say never, eh.

We've been thrilled to welcome my mom back today. And this time she even brought my dad along!! This was actually their vacation that they had planned since May, or somewhere thereabouts. It's been planned since long before we knew Gracie had cancer, it just happens to coincide with round 2. Lots of things just seem to "happen" to work out in our favour.

We got a couple of letters in the mail for Gracie today. One was from Georgia and another was from California. I'm not sure if I know them personally or not (they may be relatives of James' that I'm just not familiar with) but we really appreciate them. They're very cute cards. Also we got our first contact from the Make A Wish foundation. Yes, Gracie gets to make a Wish and we're all pretty excited about it. And what does she want for her wish...why to go to Walt Disney World of course. It's the most popular Wish granted. 5000 kids are sent to Disney by the Make A Wish foundation a year. We don't know any of the details yet we just got a letter telling us they'd meet with us and do their best to grant her wish. It kind of scared me when they first said that Gracie qualified for it as you have to have a life threatening illness to qualify. It drove the idea home for me of how serious this situation is. But now that I've gotten used to the idea I'm glad she gets something good out of all of this. Gracie is thrilled.

Stephanie

Our new friend, Noah

Yesterday, I received an e-mail from a family that, last Tuesday, received the news that their 4 month old son, Noah, was diagnosed with Bilateral Retinoblastoma. They found this blog after their diagnosis and sent me an e-mail to tell us of their situation. These next couple days are going to be huge for them as Noah will have an EUA and MRI to find the extent of the tumors. We pray for Noah and his family, especially over these next couple days. It is nice to know that this blog has been of some measure of service to another family.
May God bless and comfort Noah and his family, as He has so abundantly blessed us.

Where is Gracie's blood?

So I probably should have posted on Friday when the blood went missing but I guess since we still do not have blood counts today is OK. We went down to the lab on Thursday for Gracie to have her blood work done. The order is for results to be given to the oncologist STAT because it determines if could effect Gracie's treatment plan. So the oncologist expects the results that afternoon as soon as they are available. We also get the results from our doctor to know if there is anything that we have to do different. The lab is 30 minutes away and causes Gracie quite a bit of discomfort (no lab seems to want to do finger pricks as the Houston medical team suggests, so all blood is drawn from a vein in her arm).
Anyway, on late Friday morning Stephanie has not heard from anyone about the blood counts so she calls the Nurse Practitioner in Houston. They tell us that they have not seen the results but will track them down. A few minutes later they call back to say that the labs will not release any information and Stephanie will have to track it down. So Stephanie calls the lab where it was drawn and they assure her that the blood has been sent away. Stephanie calls the lab that processes the blood and at first they do not know where it is. Then they find the blood but no mention of a STAT order is with it so they had not rushed it. They say they will but neither us nor the medical team in Houston has the results as of today (Sunday). So we really do not know if her levels are high enough that we do not need blood work tomorrow or if we should be concerned about other problems.
It is obvious that her platelet counts are lower than usual as she bruises very easily. She loves to run and play with her sisters (and her dad), so ends up falling or crashing often. So her legs and arms have lots of bruises. Hopefully tomorrow will be a "free" day and we will not need to go to the lab again.
We are finding that Gracie is losing more and more hair when it is brushed. You cannot tell from looking at her but it is obvious when you are brushing that more is coming out. The bulk of her hair loss is likely to happen after her second round of chemotherapy. It is sad to think of her losing her hair but it is good to see that the drugs are doing their job. So we will just keep cheering the chemo on and praying for it to win the fight against her cancer!
As always, the love and concern of our many friends has been incredible. We wish you all the very choicest blessings.

Normal is Great!

The last three days have been crazy and full, but normal crazy and full. It has been nice to feel a little normalcy again! So I just thought I would leave a quick post to say that things are going well. Gracie is feeling great, she no longer needs her daily shots (until after the next round of chemo on Oct 9-11)!! Gracie even got outside to play at the park with some friends today and loved it.
As always, we appreciate all of your love and support!