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.