Wednesday, November 14, 2012

The End of an Era

It's an exciting day. Well, I guess yesterday was an exciting day but I was too busy celebrating to post a  blog. Gracie had her very last EUA yesterday....EVER! She has gone under anesthesia more times than  I can count and hopefully yesterday was her last time in a very very long time. She will continue to have her eye examined by a pediatric ophthalmologist, but from now on they can all be in clinic! We celebrated last night by having a pizza party. Gracie was allowed to pick whatever she wanted for supper and that's what she picked. Really I feel like a day like that deserved to be celebrated by a trip to Disney World or something, but this is what we were able to do for the time being. Of course the EUA went well and there was nothing out of the ordinary to be found on the exam. I love having healthy kids!!

The previous sentence leads me to another thought. A few weeks ago, on a Sunday morning, Gracie came into our room complaining that her right (prosthetic) eye hurt. It was red and puffy, so I took the prosthesis out to clean it. The eye socket was an angry red. I assumed she had an eye infection so started her on antibiotic drops. That evening things still weren't any better, in fact they were worse. I was concerned that the drops were just too old (although they were still two years before the expiry date, they had been open for a few months) so I decided to call her new pediatric ophtalmologist in the morning if things didn't improve. Monday morning the eye looked worse so I called Dr. E. She got us into the office in an hours time where we underwent a thorough exam. Opthalmologist appointments are never quick because after the initial asssessment they always put in dilating drops to check out the retina in the remaining eye. It takes 45-60 minutes for the eye to fully dilate. And the drops sting! At the end of the exam she changed the drops and added an additional steroid drop as well. She assumed it was being caused by irritation by the prosthesis and we should make an appointment to get the eye polished ASAP. I didn't really buy the prosthesis theory, nor did James, nor did the ocularist when I called and made an appointment to polish the eye. Tuesday the eye still wasn't better. Wednesday I finally decided to call Dr. Gombos our ocular oncologist in Houston. It took several hours to get a hold  of him but when I explained the scenario he said he was concerned about the pain Gracie was experiencing, especially since it was worse with movement. He figured the infection was too deep to treat with topical antibiotics and she'd need at least oral antibiotics. He mentioned she'd need an MRI to determine the extent of the infection and to rule out neoplasm (new tumors), although rare we had to rule it out given Gracie's medical history. He also warned me that it would be easy for a radiologist who wasn't used to seeing images of an ocular implant to give a false positive diagnosis for neoplasms given that they are vascularized, porous implants. Good to know. Keep in mind most doctors never, or rarely deal with prosthetic eyes. Dr. Gombos is an ultra specialized specialist. This is what he does and people fly from all over the country to see him because of his expertise. It's sure nice to have him to consult with! He mentioned that he would be more than happy to consult with the physicians who were caring for Grace here.

So we knew after that phone call that Grace needed to get into the ER and get some systemic antibiotics. We also needed an MRI done. But it was late afternoon and James had a night class to teach. He ended up taking her with him to his night class and have her sit in the room across the hall from his class so he could keep an eye on her as he was lecturing. She loved it! She kept saying how cool it was to see her daddy working. The class was 3 hours long! After the class they went to the ER. They didn't have to wait, they were taken right back. We were just expecting a prescription for antibiotics and then get sent home. But the doctors were quite concerned so they admitted her to the hospital and the MRI was scheduled for the next day. As soon as I could get the kids to school and the other kids in the care of my friend I joined them at the hospital. They gave Gracie some ativan before the MRI, she said she loved the "daydreams" she had while they did the MRI. This is surely why ativan is not available over the counter. They had started her on IV vancomycin and ceftriaxone. Her eye still looked incredibly swollen. The rest of the day was just hanging out in the hospital. If you've spent time in them you know what I mean. I swear hospitals suck your brain cells out of your head.

Friday was waiting...waiting...waiting. She was looking better and we were hoping we could be discharged. Then the pediatricians came on their rounds. They asked if they could speak to us in another room. Just so you know, that's never a good sign. But Dr. Gombos had warned me about false positives around the implant from the MRI, so I wasn't worried. They got James and I in the little room and explained that Grace had a "sizeable" infection around the implant. It was orbital cellulitis. Then they asked us if we considered her a healthy child. She's the picture of health. They continued to explain that the MRI showed a mass near her brainstem between the 4th ventricle and cerebellum. Okay, this is nowhere near the implant. All the sudden I was worried, the implant wasn't playing a factor at all. Gracie has very high odds of developing a second primary tumor due to her genetic deletion. We discussed it being artifact on the MRI. The doctors hoped that this was the case, but the radiologist said it was unlikely. The mass resembled rhabdomyosarcoma. And the world stopped turning. My first reaction was to laugh, mostly in reply to James' comment "This was the first time I've actually been here for a diagnosis".  And that's the truth. He wasn't there when Gracie was diagnosed with retinoblastoma, he wasn't there when they told me they thought our son had muscular dystrophy (he doesn't and he's a healthy and active little boy now). He's always been doing other good things to take care of us, he's far from a dead beat dad, but he just didn't happen to be there at those exact times.  My brain then went into overdrive as I started thinking of all the things that we'd need to do if we needed to undergo cancer treatment again. The pediatricians talked to us for awhile about what we needed to do in the next couple of days and then left us in the little room so we could talk. When they left I finally cried. I love my husband. If we were going to do this again I was so glad he was going to be by my side, just like he always is.

We needed to repeat the MRI before they did a biopsy, just to rule out artifact. We met with the neurosurgeon. The pediatric neurosurgeon was on vacation until that Tuesday (this is all on Friday still). Remember we live in a small city, there is only one pediatric neurosurgeon. Actually in a city this size I'm surprised there is one at all. Since we couldn't do the biopsy until Tuesday the repeat MRI was scheduled for Monday morning, this time it would be done under general anesthesia. We met with the oncologist, he wanted to rule out that the tumor had metastasized so we were going to get an MRI of the brain and spine this time. Grace was very concerned about missing our church's trunk or treat (although there was snow on the ground so it was more like a classroom or treat), so we were given passes from the hospital. We could leave in between rounds of antibiotics so long as we were back each time her meds were due. I'm so glad she could go to the trunk or treat with our family and have a great time. My heart was heavy but I put on my happy face the best as I could. I actually think I did a pretty good job of it too.  Friday night I did pretty good emotionally. As the weekend progressed, I digressed. By Saturday James called to have his mother come stay with us since it was too much for me to take care of my other kids and deal with Grace in the hospital too. I started reading about rhabdomyosarcoma to get to know the enemy, but when I read the 70% survival rate I closed the book. I didn't want to know more until I knew for sure I needed to know more. I talked to my angel sister several times. A figurative angel, not a literal one. Just to be clear. She suggested we have a family fast. So all of mine and James' siblings as well as a couple of close friends from Texas joined in a fast that Sunday.

Monday morning my stomach was in knots. Gracie was fasting since she was going under general anesthesia, and James and I have a policy of never eating if she can't eat. I wouldn't have been able to eat anyway. It seemed like forever before they came to our room to get us for the MRI. James had somehow managed to teach his morning classes before the MRI, I would have never been able to have been rational enough to have done that. As soon as his classes were done he joined us. Shortly thereafter it was time for her to go downstairs for the MRI. The anesthesiologist came and talked to us before they took Gracie. She mentioned that she had read the chart, then said "I'm a mother. I'm going to have the radiologist come and talk to you as soon as we're done in there." I love that woman!! Gracie had no idea how serious things were. We had decided not to tell our kids what was going on until we knew for sure ourselves. All she knew is that we needed another picture of her brain.  The MRI would take about an hour.  I've learned through experience that peace doesn't always mean that there won't be any problems, it just means that everything will be okay. As long as we have the Lord on our side, as long as families are forever, everything will be okay. But it can still be hard, and painful. Sometimes you pray for a miracle, and the miracle that happens is that you can find the strength to accept the Lord's will. Truly, that's as big as a miracle as any other. That's the miracle we had when Gracie was diagnosed with RB, that's the miracle we had when we decided to remove Gracie's eye. What a blessing that miracle has been in our lives. But on that day, on October 29 we got another miracle. The radiologist came into the room to talk to us and told us he looked hard, he got great pictures, but he could find absolutely no mass or anything out of the ordinary where they had found the mass, or any other place. It was decided that what had been seen on the previous MRI was just artifact! To quote James' sister when she heard the news "Tears of joy. Prayers of gratitude!" To say we were elated was an understatement. I felt like I was walking on clouds. We've had the diagnosis go the other way too many times. My heart was truly overflowing with gratitude.

All that was left was to determine the long term plan to treat Gracie's orbital cellulitis. Well we had to come back to the hospital on Tuesday to see the infectious disease doctors. They determined that she could be stepped down to oral antibiotics and she was discharged for good from the hospital that afternoon.

Wednesday morning, after missing 7 days of school Grace was back in school and we were back to our regular routine. As I said, I LOVE having healthy kids!!! 

You can't really see how red her eye is, but this gives an idea of how swollen the eye became. If only you could have seen how swollen the socket was too. We had her sleep one night with the eye out, just in case it was the prosthesis, and when I woke her in the morning her socket was so puffy it looked like she had an eye in it. It's supposed to look sunken when empty.  Poor kid. She was in so much pain I kept her on ibuprofen round the clock. It helped the pain and inflammation, but masked the fever. Oops. 

 In the hospital on IV antibiotics. Her body was exhausted as it tried to fight off this huge infection happening in her head. It was likely caused by a sinus rupturing into the space around the implant. We didn't even realize she had a sinus infection. She just had a little tiny bit of a runny nose. 

 Starting to feel much better! Still in the hospital though

Discharged in time to spend Halloween with her family at home! Looking and feeling infinitely better. 

Sunday, August 26, 2012

Another EUA...or two.

I made this post several months ago for our family blog and kept meaning to post it on here. Well, now that James has posted on this blog about Gracie's 4 year diagnosis day anniversary it inspired me to paste this post here too.

In January (2012) Gracie went for another EUA, it was also time for her new baby brother's EUA as well as time to draw his blood so they could do his genetic testing. Due to a last minute meeting James had, I had to take the kids by myself to Houston. I was quite concerned about taking care of both of the kids by myself in the recovery room but things actually worked out quite well. We made it back to Austin in record time, which I guess can be expected when you leave at 4am, but both kids got two thumbs up with their retinas and the baby's tests did come back negative for Gracie's RB1 mutation. Thankfully, she's one of a kind in that regard. 

 Here's a very hungry baby in pre-op. He was required to go without food for 4 hours prior to anesthesia. They have no idea how big of a sacrifice this was for our little porker. He'd never done that before and I don't think he's ever done it since. He was two months old for all of this.

 In the recovery room. He's still asleep, hence the oxygen.

 We're pretty used to seeing our little Gracie like this. Thankfully she comes out of anesthesia very well. We've lost count of how many times she's been under it. I think it's something like 25 when you consider EUA's, MRI's and surgeries. 

Sleepily sipping her apple juice that she drinks after every EUA. 

He may look really ticked off, and he may well be, but thankfully he stayed quiet for long enough for me to help Gracie as she came out of anesthesia. He was awfully tired in this picture still, although thankfully his tummy was now full as I nursed him as soon as he was alert enough to eat. That made him a much happier little man.

Of course on our way out of town we stopped by IHOP. You simply can't have an EUA without IHOP after:) 

Diagnosis Day (four years out)

I will post a picture or two later, but just wanted to mention that today is the day we celebrate Gracie's diagnosis day.  We had blizzards on the way home from an amazing vacation with family at the lake.  Gracie loved to be on the water.  She loved being on the tube or watersled behind the boat, creating sandcastles, playing in the water, and all the other fun things you do at the lake.  It is amazing to watch our little girl grow so big.  She was only two years old when she was diagnosed and now she will be starting grade one.
In the last few months we have moved away from Texas and to a new home.  We miss our good friends and the people that loved and supported us during Gracie's treatment.  We saw the very best of many, many people.  Now that we are among new friends that, for the most part, know nothing of Gracie's experiences it is interesting to watch her interact with them and see her share things in her own way.  Even some of our good friends know nothing of Gracie's prosthetic.  I feel like it is Gracie's choice to share what she wants with others.  She is not shy about it though.  If the topic of eyes comes up she will proudly speak about her fake eye and the amazing things you can do with it.  She thinks it is funny to touch her eye for people to demonstrate that it is fake and doesn't hurt to poke it.  I heard her and her brother in the back seat of the car today playing a game of "Poke your eye." I think they were trying to see who could poke the hardest before stopping.  Stephanie and I were not encouraging it but I thought it rather funny and Gracie certainly had the upper hand.

Well, we have been blessed beyond measure.  We thank all of you that have supported Gracie and our family.  Today we celebrate the freedom that Gracie's diagnosis gave us, as it afforded us the opportunity to see our little girl loving life cancer free.

Friday, July 29, 2011

Gracie Pics

Gracie has been doing marvelously. She is always her cheerful self and has loved participating in swim team throughout the first half of the summer. Just the other day, Stephanie took pictures of the kids at a nearby park. These are a few pictures from that photo shoot.

I am grateful for Gracie's health and happiness. She is such a joy and blessing in our lives. I have been blessed by the prayers and faith of many friends and family. I was reminded of all the miracles we have seen as I watched Gracie tell a friend of mine how she needs to protect her real eye with glasses because if she had two fake eyes she would not be able to see. There was no sadness or worry in her voice, she was smiling the whole time and just wanted to explain the facts. This friend has a 15 month old son, Chase, that was recently diagnosed with severe Hypertrophic Obstructive Cardiomyopathy. It is a disease of the heart that is not common in children but can cause sudden cardiac death. They are going through many of the same emotions that we did in our journey with retinoblastoma. I admire their faith and positive outlook through their current struggle. From experience I know that even though you try to have hope and exercise faith, some days are still hard when you don't know what the future holds for your child. My family and I are praying for Chase and his family and hoping for the very best.

You can read more about Chase and his condition here-

Wednesday, July 27, 2011

Rolling down the Highway

Gracie's last EUA was on May 20, 2011. I took her myself as Stephanie was not feeling well. All is well and she enjoyed her time seeing all her friends at the Children's Hospital. On the way back, Gracie was rather quiet in the backseat. When I plugged my phone into the computer I found out why. I have made a quick movie out of Gracie's picture-taking. I deleted about 40 pictures even before deciding to make this movie. I didn't include the 3 and a half minute video she made in the car either as I was getting sick watching the world spin around and around. Gracie is so crazy. Enjoy!

Sunday, January 23, 2011

Gracie's gingerbread man

We made gingerbread houses over the Christmas break. Gracie was insistent that she make a gingerbread girl by herself. So she made this girl with a green fake eye. I thought it was pretty funny. (Try to ignore that Gracie's hair was never done the day we took the pictures. It was Christmas break you know.)

Sunday, December 12, 2010

Trip to Bethlehem

Yesterday, we went to Burnet, TX where they have a really elaborate nativity display. It is really about a full city block that models what Bethlehem may have looked like 2000+ years ago. They have Roman soldiers, blacksmith shops, live donkey and camels, little homes, inns, beggars, merchants, etc. This year we went with our friends, Noah and Elizabeth. We had a great time together despite having to wait 1.5 hours to get in to see the village. It was a good thing that Gracie wore her rain coat as it protected her clothes from the hot chocolate she spilt down her front.

Today Gracie was playing hide-and-seek with her sisters and was counting with only one eye covered. Her sisters were going to get after her for cheating but then realized she couldn't see out of the uncovered eye anyway. She was just being really efficient by only covering one eye.

Also today, a the speaker in our church meeting talked about gratitude. He was listing off many of the things that we forget to be grateful for and asked us to consider some of them today. One of the things he said was, "Do you ever express gratitude for eyeballs?" Stephanie and I exchanged knowing looks and I suppressed laughing. We have certainly learned to be grateful for eyeballs, and we express it on an almost daily basis.

We are sure grateful for all of the prayers and support that we have received and continue to receive! We hope you all have a very merry Christmas.

Thursday, December 9, 2010

Crazy Christmas Photo Shoot

We were taking pictures in front on the Christmas tree tonight and I told them that we needed a crazy picture. I thought Gracie looking pretty hilarious in these photos!

Friday, December 3, 2010

Favourite Gracie Quote

Said as I was cleaning her eye which had fallen out - "If you had two fake eyes it would be really hard to see."

Thursday, December 2, 2010

Another EUA and all is well

On November 12 Gracie went for another EUA. The picture above is Gracie with Dr. G., right before her EUA. She was excited to get a picture with him and told everyone that spoke with her that she would like a picture with Dr. G. Something that once was so pivotal in our life is now almost a non event. In fact, since we had a hard time finding someone to take care of our other children I stayed home and James went by himself with Gracie. Two years ago that would have never happened. But we're no longer worried about new tumor growth. Gracie is now 5 years old. By now many practitioners would say that Gracie no longer needs EUA's but can just do office visits. However, Dr. G. is a very thorough, some would say over cautious, doctor (which we LOVE) and he does them until the age of 7. As of this visit however Gracie is only required to do EUA's every 6 month! So she has a grand total of 4 EUA's left and then she never has to do another one again. Dr. G kind of laid out a road map of what we need to do with Gracie in the future. So it's EUA's as mentioned. 2 more MRI's at intervals of 6 months. After she's turned 7 she'll still need to have dilated eye exams done every year, but any ophthalmologist will be able to do them, it won't require a RB specialist. In fact they won't even really be screening for RB any more they'll be looking for complications caused by all the treatments in her left eye such as cataracts and glaucoma. She'll also require annual check ups with her oncologist and followup for any unusual symptoms.

He also recommended that when she's old enough to start menstruating that we take her to a geneticist to discuss her genetic mutation and the complications that this can have with her own children. He suggested puberty as the ideal time because she'd be old enough to understand a bit more and because she'd be fertile then. I really liked that idea because I've been wondering when the best time would be to tell her about her genetics. Gracie, like many girls, likes to talk about that future "someday" when she gets married and the children she'll have. Families are important to our family, children are important to us. She knows that and she dreams about having a family of her own someday. You can't exactly tell a 5 year old that having children is kind of complicated for her. She's too young to understand, and she's too young to have that kind of a burden even if she did. But I don't exactly want to spring it on her right before she gets married either. I thought Dr. G's suggestion was simply the best timing possible, I think.

To be entirely clear. Gracie will have no complications (that we know of) conceiving a child, but her children do have a 50% chance of inheriting her genetic mutation on her RB1 gene meaning that they have a 50% chance of developing retinoblastoma and all the other health risks Gracie has. As a result some people decide to adopt children, others decide to do preimplantation genetic screening of embryo's, and others decide that they just want to have children the old fashioned way despite the risk. We will support Gracie 100% in whatever decision she makes when it comes time for that, but she needs to have all the knowledge required to make her decision.

Hopefully in 20 years this will all be solved and they'll know how to fix the deletion she has. But if they haven't, truthfully the further out we get from this ordeal the more I hope that she'll just put things in God's hands and have a baby. I look at her and see how strong and beautiful she is and think how very insignificant of a role cancer has played in her life. It's ancient history, just a distant memory. The only thing it has done is make her stronger and more beautiful. The only decision that would make me truly sad would be for her not to have children, because then she'd miss out on some of the greatest joy that life has to offer. It would be sad for me to see her consciously choose to miss out on that. But Gracie is a smart and vibrant girl who is filled with faith and a love of her Saviour and I know that she will make the best decision for her when the time comes. But we have years and years till we have to worry about that and I'm just going to spend the time loving my little girl and listening to all the big dreams that she has. What a wonderful world this is with her in it.