Thursday, March 28, 2013
Thursday, March 28, 2013
I got a call Tuesday afternoon that Collins glasses were ready, so we went and picked them up. He was excited to get them, and said, "Now I look like you and Daddy and Neya!" A little later however, he was crying, "I don't want to wear them! I don't like them!" He's slowly getting used to them. I think he looks extremely adorable in them!
Friday, March 22, 2013
Friday, March 22, 2013
Collin and I flew down to Houston Monday for the follow-up appointment with Dr. Edmond Tuesday afternoon. As usual, Collin was a great traveler, and the trip went smoothly. The appointment Tuesday was a bit long once you factor in time spent waiting, but overall it went very well.
Dr. Edmond said the condition of the surface of Collin's right eye has improved about 90% with the frequency of the lubricating drops, but she feels it is still a bit dry which is why he holds it closed with his finger so much. At first she didn't feel the patching was helping, but she had been thinking we had been doing it for a longer time. When I reminded her that we had only been patching since January (after Collin's eyes had healed following the surgery in December), and told her that I've noticed a difference in how he sees out of the right eye when the left eye is patched now versus when we first started in January, she said to continue patching for two hours a day. Collin is very near sighted in his right eye, so she gave us a prescription for glasses, which will help with a few things. First, glasses will help protect his good eye, which will be reassuring once he is in school. Second, the right lense will help a bit with the near sightedness in the right eye, which will help him see even better when the left eye is patched. Third, we can use an eye patch that will fit over the eyeglass frames instead of the patches that stick to Collin's face; when he's on the Accutane and his skin is very dry, the patch either pulls off skin, or doesn't stick if there is moisturizer on his face. And fourth, since Collin's eyes are very sensitive to sunlight and he wears sunglasses outside, she said we might be able to find glasses that come with clip on sunglasses. So the plan is to get Collin his glasses, and keep using the lubricating drops and eye patch for the next few months. When we are back in Houston over the summer for his one-year post-radiation follow-up appointments with MD Anderson, Dr. Edmond will check his vision again. Then while we're there, she wants Collin to have the surgery to put the small gold weight in his right eyelid to help that eye close a bit more so Collin might be more comfortable.
After the appointment, we stopped in to visit our friend Hannah, who we met last summer at MD Anderson Proton Center. She is also fighting medulloblastoma, and has been getting her chemo at MD Anderson Cancer Center. It was really nice to see her and her parents, even if it was a quick visit!
Wednesday we had a relaxing day with my parents, and bright and early Thursday morning, Collin and I flew home. Our flight left at 7:30 am, so we were up by 3:30-4:00 am (central time). I chose that flight because it got us back to BWI early enough that Bill had time to pick us up and get us back home before it was time to pick Neya up from school, but it turned out to be too early for Collin. He started crying about ten minutes before we boarded the plane. Once we were on the plane, he went to sleep for a little while, but when he woke up, he was very unhappy. He dozed once or twice more, but when he wasn't dozing, he was whining or crying or throwing a tantrum. Needless to say, it made for a stressful flight. It was pretty out of character for him, so I think he was tired and had just had enough. When we finally got home, he was happier, and when he saw Neya after she got home, he was VERY happy!
Today Collin and I went and picked out his glasses. He looks very cute in the frames we chose, and we were able to get clip-on sunglasses that fit the frames perfectly. Collin was excited to pick out the frames; he said "Now I wear glasses like mommy, and daddy, and Neya!" I hope he still feels excited when they're ready to be picked up in about a week and he realizes he has to wear them all the time!
Dr. Edmond said the condition of the surface of Collin's right eye has improved about 90% with the frequency of the lubricating drops, but she feels it is still a bit dry which is why he holds it closed with his finger so much. At first she didn't feel the patching was helping, but she had been thinking we had been doing it for a longer time. When I reminded her that we had only been patching since January (after Collin's eyes had healed following the surgery in December), and told her that I've noticed a difference in how he sees out of the right eye when the left eye is patched now versus when we first started in January, she said to continue patching for two hours a day. Collin is very near sighted in his right eye, so she gave us a prescription for glasses, which will help with a few things. First, glasses will help protect his good eye, which will be reassuring once he is in school. Second, the right lense will help a bit with the near sightedness in the right eye, which will help him see even better when the left eye is patched. Third, we can use an eye patch that will fit over the eyeglass frames instead of the patches that stick to Collin's face; when he's on the Accutane and his skin is very dry, the patch either pulls off skin, or doesn't stick if there is moisturizer on his face. And fourth, since Collin's eyes are very sensitive to sunlight and he wears sunglasses outside, she said we might be able to find glasses that come with clip on sunglasses. So the plan is to get Collin his glasses, and keep using the lubricating drops and eye patch for the next few months. When we are back in Houston over the summer for his one-year post-radiation follow-up appointments with MD Anderson, Dr. Edmond will check his vision again. Then while we're there, she wants Collin to have the surgery to put the small gold weight in his right eyelid to help that eye close a bit more so Collin might be more comfortable.
After the appointment, we stopped in to visit our friend Hannah, who we met last summer at MD Anderson Proton Center. She is also fighting medulloblastoma, and has been getting her chemo at MD Anderson Cancer Center. It was really nice to see her and her parents, even if it was a quick visit!
Wednesday we had a relaxing day with my parents, and bright and early Thursday morning, Collin and I flew home. Our flight left at 7:30 am, so we were up by 3:30-4:00 am (central time). I chose that flight because it got us back to BWI early enough that Bill had time to pick us up and get us back home before it was time to pick Neya up from school, but it turned out to be too early for Collin. He started crying about ten minutes before we boarded the plane. Once we were on the plane, he went to sleep for a little while, but when he woke up, he was very unhappy. He dozed once or twice more, but when he wasn't dozing, he was whining or crying or throwing a tantrum. Needless to say, it made for a stressful flight. It was pretty out of character for him, so I think he was tired and had just had enough. When we finally got home, he was happier, and when he saw Neya after she got home, he was VERY happy!
Today Collin and I went and picked out his glasses. He looks very cute in the frames we chose, and we were able to get clip-on sunglasses that fit the frames perfectly. Collin was excited to pick out the frames; he said "Now I wear glasses like mommy, and daddy, and Neya!" I hope he still feels excited when they're ready to be picked up in about a week and he realizes he has to wear them all the time!
Thursday, March 14, 2013
Thursday, March 14, 2013
It seems I am WAY overdue for an update!! Basically, things have been going along smoothly since my last post. Collin is well...healthy and happy. He has resumed his therapies, so we are at Hershey three days a week (four when he has clinic, every other week). He had a six to seven month break from his therapies, starting last summer when we went to Houston for radiation, until the beginning of this year when the worst of the radiation fatigue was behind us. I didn't think the time off caused him to lose any abilities, and it seems he continued to move forward even with the break. It has been exciting to watch him resume therapy and to see what he can do now that he wasn't able to do seven months ago!
The end of January brought some snow our way, and Collin decided he wanted to go out and play in it for a few minutes. It was only his second time ever playing in the snow. He played for about 15 minutes; he didn't last long because he minds the cold, but he said he had fun while he was outside!
The first Saturday in February, we spent a day with our THON organization at Penn State Altoona. They held a carnival with games and activities, and as always, we had a blast with the students. It also made us very excited to spend THON weekend with them on February 15-17. Our Altoona group broke the fundraising record for the Penn State Commonwealth campuses by raising over $100k for the Four Diamonds Fund...$105,570.01 to be exact! And the grand total raised for the Four Diamonds Fund by Penn State's Dance MaraTHON for the 2012-2013 school year was over $12 million!!! AMAZING!!!
Collin continues with his maintenance chemo two weeks a month. He's also (unhappily) wearing his eye patch for two hours every day. Collin and I will be flying to Houston for a few days next week for a check-up with Dr. Edmond, the pediatric ophthalmologist at Texas Children's Hospital who did his eye surgery in December. And we're already only a few weeks away from Collin's next MRI at Hershey, scheduled for April 8. In the meantime, we're just trying to be present and enjoy each day we have together!
The end of January brought some snow our way, and Collin decided he wanted to go out and play in it for a few minutes. It was only his second time ever playing in the snow. He played for about 15 minutes; he didn't last long because he minds the cold, but he said he had fun while he was outside!
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| January, 2013 |
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| Collin pie-ing Daddy in the face at the family carnival |
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| Our 6 awesome dancers and us THON weekend 2013 |
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| Water gun battles are a favorite activity at THON, so Collin decided to give it a try. He was NOT a fan of getting wet! |
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| There are many things to see at THON...Collin isn't familiar with Star Wars or Storm Troopers yet; he thought it was "exciting to see robots, Mom!!" |
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| THON 2013...FTK |
Saturday, January 12, 2013
Friday, January 11, 2013
Yesterday, we got to clinic bright and early for the fasting labwork ordered by the endocrinologist. Then we hung around until it was time for the MRI. First Collin asked me if we HAD to get his pictures taken (that's how I explain the MRI to him), and then he told me he didn't WANT to get his pictures taken. Then he kept making sure Bill and I would be there with him when he went to sleep and when he woke up. When it was finally time for anesthesia, Collin was calm and cooperative. In some ways it's easier now that he's older, because I can explain things to him in simple terms so he understands and knows what to expect. Of course he can also more easily tell me he doesn't want to do something, which is hard when there's not a choice.
The MRI went smoothly, and Collin came out of anesthesia fairly quickly and easily. While we were waiting for him to wake up, Dr. Comito came to tell us that although not all of the images were read yet (an MRI of the brain and spine is made up of literally hundreds of pictures, so it takes time to get them and read them), the images of his brain looked good. We breathed a HUGE sigh of relief! Ironically, while Collin was in MRI, we got a call from the endocrinologist saying all of his labwork came back normal, so he doesn't need to start on oral hydrocortisone yet! For now we'll just keep monitoring him.
This morning Collin had his speech therapy evaluation. Collin grew tired fairly quickly and needed encouragement to finish the hour-long session. His speech therapist could see some improvement, but there is still a lot to work on. She will see him once a week, and will initially see him for 45 minutes due to his fatigue.
After speech therapy, we went home for lunch, and Collin took a little nap. Then we went back to Hershey for his neuro-oncology clinic appointment. We met with two of the other oncologists and the neurosurgeon, who reviewed the MRI report with us. There is no evidence of active disease. The areas where the relapses were do not enhance (show up brightly), and there is decreased blood flow to those areas as well (tumors need a blood supply to grow). The neurosurgeon mentioned how Collin seems to have this "life force" in him because he keeps managing to "bounce back" from every setback he's ever had, and how the person least affected by everything he's been through is Collin himself. Tonight, I'm just so incredibly grateful...for another three months to live "normally" and watch Collin continue to move forward, for the amazing doctors, nurses, and therapists who take such wonderful care of him, and the constant love and support from our family, friends, and so many others around us. We are blessed.
The MRI went smoothly, and Collin came out of anesthesia fairly quickly and easily. While we were waiting for him to wake up, Dr. Comito came to tell us that although not all of the images were read yet (an MRI of the brain and spine is made up of literally hundreds of pictures, so it takes time to get them and read them), the images of his brain looked good. We breathed a HUGE sigh of relief! Ironically, while Collin was in MRI, we got a call from the endocrinologist saying all of his labwork came back normal, so he doesn't need to start on oral hydrocortisone yet! For now we'll just keep monitoring him.
This morning Collin had his speech therapy evaluation. Collin grew tired fairly quickly and needed encouragement to finish the hour-long session. His speech therapist could see some improvement, but there is still a lot to work on. She will see him once a week, and will initially see him for 45 minutes due to his fatigue.
After speech therapy, we went home for lunch, and Collin took a little nap. Then we went back to Hershey for his neuro-oncology clinic appointment. We met with two of the other oncologists and the neurosurgeon, who reviewed the MRI report with us. There is no evidence of active disease. The areas where the relapses were do not enhance (show up brightly), and there is decreased blood flow to those areas as well (tumors need a blood supply to grow). The neurosurgeon mentioned how Collin seems to have this "life force" in him because he keeps managing to "bounce back" from every setback he's ever had, and how the person least affected by everything he's been through is Collin himself. Tonight, I'm just so incredibly grateful...for another three months to live "normally" and watch Collin continue to move forward, for the amazing doctors, nurses, and therapists who take such wonderful care of him, and the constant love and support from our family, friends, and so many others around us. We are blessed.
Wednesday, January 9, 2013
Wednesday, January 9, 2013
Collin has had two of his three therapy evals so far this week. Monday we saw his physical therapist. She will see him once a week to work on strengthening and balance; some things we need to work on at home include having him stand and walk on his knees, and catch and kick a ball without losing his balance. Today we had occupational therapy. He will also be getting OT once a week, to also work on strengthening and coordination. We will see his speech therapist Friday. I've also been working on patching Collin's left eye, and got him up to an hour yesterday. Our goal is two hours a day.
Today we saw a pediatric endocrinologist due to the low Cortisol level found last week. Collin has hypopituitarism; basically the radiation has damaged his pituitary gland, which in turn is not controling the thyroid and adrenal glands properly. Cortisol is produced by the adrenal glands, and controls blood pressure and blood sugar, helps the immune system, and is released as part of the body's response to stress. When Collin has anesthesia tomorrow for his MRI, he will receive a "stress dose" of hydrocortisone to prevent an adrenal crisis, which can be life threatening. The endocrinologist ordered fasting bloodwork to be done early tomorrow morning before his MRI; she is checking his thyroid, cortisol levels, etc. She suspects the labwork to show he has hypothyroidism as well. If this is the case, he will need to take medication three times a day...for the rest of his life. A few years down the road, he will also need daily injections of growth hormone. None of this really comes as a surprise; I knew this was likely because of the radiation. I'm just a bit surprised that it has shown up so soon, but Collin's oncologist said this is not uncommon.
The morning after Christmas, Neya woke up at 2 am with severe ear pain, so the next day I took her to our pediatrician. As I suspected, she had an ear infection. While we were there, I mentioned that Neya has complained to me a few times about a rapid heartbeat and pain in her chest. So, the doctor ordered bloodwork and an EKG. Yesterday we met with the pediatrician to discuss the results. All of her bloodwork was fine. Her EKG showed a normal sinus rhythm, but also showed a "mild right ventricular conduction delay". Our pediatrician doesn't think it's anything serious, but since it's not something he would have expected, he has referred Neya to a pediatric cardiologist for a cardiac workup. Her appointment will be next Tuesday.
Tomorrow will be a long, stressful day. We'll be at clinic at 8 am for labwork, and the MRI is scheduled for 11. Hopefully we will be able to get a preliminary read tomorrow. My anxiety over scan results has reached a new level now that Collin has had radiation. Before, I always knew that we still had radiation to try, which was some reassurance. It was his best chance at a "cure". Now that we've done radiation, I know there is not a lot left to try if he relapses again. It's a terrifying thought. There is nothing in the world I want more than to see my sweet boy grow up.
Today we saw a pediatric endocrinologist due to the low Cortisol level found last week. Collin has hypopituitarism; basically the radiation has damaged his pituitary gland, which in turn is not controling the thyroid and adrenal glands properly. Cortisol is produced by the adrenal glands, and controls blood pressure and blood sugar, helps the immune system, and is released as part of the body's response to stress. When Collin has anesthesia tomorrow for his MRI, he will receive a "stress dose" of hydrocortisone to prevent an adrenal crisis, which can be life threatening. The endocrinologist ordered fasting bloodwork to be done early tomorrow morning before his MRI; she is checking his thyroid, cortisol levels, etc. She suspects the labwork to show he has hypothyroidism as well. If this is the case, he will need to take medication three times a day...for the rest of his life. A few years down the road, he will also need daily injections of growth hormone. None of this really comes as a surprise; I knew this was likely because of the radiation. I'm just a bit surprised that it has shown up so soon, but Collin's oncologist said this is not uncommon.
The morning after Christmas, Neya woke up at 2 am with severe ear pain, so the next day I took her to our pediatrician. As I suspected, she had an ear infection. While we were there, I mentioned that Neya has complained to me a few times about a rapid heartbeat and pain in her chest. So, the doctor ordered bloodwork and an EKG. Yesterday we met with the pediatrician to discuss the results. All of her bloodwork was fine. Her EKG showed a normal sinus rhythm, but also showed a "mild right ventricular conduction delay". Our pediatrician doesn't think it's anything serious, but since it's not something he would have expected, he has referred Neya to a pediatric cardiologist for a cardiac workup. Her appointment will be next Tuesday.
Tomorrow will be a long, stressful day. We'll be at clinic at 8 am for labwork, and the MRI is scheduled for 11. Hopefully we will be able to get a preliminary read tomorrow. My anxiety over scan results has reached a new level now that Collin has had radiation. Before, I always knew that we still had radiation to try, which was some reassurance. It was his best chance at a "cure". Now that we've done radiation, I know there is not a lot left to try if he relapses again. It's a terrifying thought. There is nothing in the world I want more than to see my sweet boy grow up.
Tuesday, January 1, 2013
Tuesday, January 1, 2013
First, as I said on Collin's facebook page last evening, I want to wish you all a Happy New Year, full of the things that are most important: FAMILY, TRUE FRIENDS, and GOOD HEALTH!!! It would also be wonderful if 2013 could bring much needed CURES for our kids!!!
Once again, I can't believe it's been nearly a month since my last update! Highlights of the last month include Collin's fourth birthday, visits and birthday wishes from our THON family, a visit with Santa, a great Christmas spent with family and friends, and a quiet New Year's Eve at home.
During our follow-up with Dr. Edmond three days after the eye surgery, she was very pleased with how much straighter Collin's right eye looked. His eyes have healed very nicely, and starting this month, we will resume patching to strengthen the weak right eye. When we see Dr. Edmond again in mid-March, she will see if the vision in the right eye has improved, and whether she needs to make any further adjustments. Our trip to and from Houston went smoothly; Collin has proven to be a pretty laid-back little traveler.
Collin turned four on December 18th. He was very excited to open cards and gifts, and for us to sing "Happy Birthday" to him! That week we had some visits from some of our THON kids as well, and were surprised when they stopped by to decorate our house for Christmas!
The weeks before Christmas brought some unexpected and incredible deliveries! If you follow Collin's facebook page, you know that we were searching for the Penn State Mr. Potato Head. Well, in an effort to locate one, a friend of ours contacted Hasbro, who referred her to Promotional Partners Worldwide. A wonderful gentleman at PPW Toys searched high and low, and found what is apparently the original prototype of the Penn State Mr. Potato Head. He sent this elusive Mr. Potato Head to Collin, along with a few other things he knew Collin would enjoy. Then, about a week or so later, a huge delivery came from Hasbro Toys, who had also become aware of Collin's love for Mr. Potato Head. They also included things for Neya for being such a great big sister! I cannot thank PPW Toys and Hasbro enough for their kindness and generosity!!!
Collin was very excited for Christmas, and had a chance to visit with Santa on December 16 when he came through our neighborhood with the West Hanover Fire Department. On Christmas Eve, he kept asking if he'd be able to see Santa when he came, and was pretty disappointed when I told him that Santa would only come if he was asleep, or he'd never get all of his deliveries made. Of course Collin had a lot of fun opening gifts on Christmas Day!
This afternoon we had a visit from our friends the Guardian Knights, who delivered a few more Christmas gifts. They brought motorcycle vests to Collin and Neya, with their new "road names" on them. They also brought a one-of-a-kind Guardian Knight Mr. Potato head to add to Collin's collection!
Tonight Collin finished his second course of maintenance chemo; this course has gone as smoothly as the first with no nausea or drop in blood counts. Although his fatigue isn't as extreme as it was after the radiation, Collin still tires easily and needs to take rests throughout the day, especially from mid-morning/early afternoon on. He also asks to go to bed between 6:00-7:00 every evening. I mentioned this to his oncologist, and she had us come into clinic early yesterday morning to check his cortisol level with his bloodwork. As it turns out, his level was extremely low (normal is between 1.7 and 22.7; Collin's was below .2). I've done some online research, and it seems this could be a potentially life-threatening condition if it continued undetected. Thankfully we've caught it, and we may be consulting with an endocrinologist very soon to further investigate and treat the issue.
With the first full week of 2013 (starting Jan. 7), our schedule will go back to being extremely busy! For starters, Collin's therapies will begin again. It has been five months since Collin has had therapy, and I am eager for his therapists to see how much progress he's made since they saw him in July. He has a PT eval Monday morning, an OT eval Wednesday morning, and a ST eval Friday morning. On Thursday of that week (Jan. 10) he has his next MRI. Then the next day, after his speech therapy eval, we have an appointment with his oncologist and neurosurgeon to review the MRI results. It's hard to believe that scan time is upon us again already. Although I try to ignore the fear that is always lurking in my soul and not let it get the best of me, scan time tends to bring it to the surface where it threatens to take over, because I know all too well how things can change in a heartbeat. We'll either hear "all clear" and be handed another three months of "normal" life, or we'll get unwanted news that will push us back into the pit of despair where we will desperately claw our way out to the next treatment option to try, if there are any options left. Please, please let the MRI be clear!!!
Once again, I can't believe it's been nearly a month since my last update! Highlights of the last month include Collin's fourth birthday, visits and birthday wishes from our THON family, a visit with Santa, a great Christmas spent with family and friends, and a quiet New Year's Eve at home.
During our follow-up with Dr. Edmond three days after the eye surgery, she was very pleased with how much straighter Collin's right eye looked. His eyes have healed very nicely, and starting this month, we will resume patching to strengthen the weak right eye. When we see Dr. Edmond again in mid-March, she will see if the vision in the right eye has improved, and whether she needs to make any further adjustments. Our trip to and from Houston went smoothly; Collin has proven to be a pretty laid-back little traveler.
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| This was taken today-hair is growing in and eyes are looking straighter! |
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| 12-18-12...Opening birthday gifts |
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| Surprise Christmas decorations... |
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| ...courtesy of our Altoona THON family |
The weeks before Christmas brought some unexpected and incredible deliveries! If you follow Collin's facebook page, you know that we were searching for the Penn State Mr. Potato Head. Well, in an effort to locate one, a friend of ours contacted Hasbro, who referred her to Promotional Partners Worldwide. A wonderful gentleman at PPW Toys searched high and low, and found what is apparently the original prototype of the Penn State Mr. Potato Head. He sent this elusive Mr. Potato Head to Collin, along with a few other things he knew Collin would enjoy. Then, about a week or so later, a huge delivery came from Hasbro Toys, who had also become aware of Collin's love for Mr. Potato Head. They also included things for Neya for being such a great big sister! I cannot thank PPW Toys and Hasbro enough for their kindness and generosity!!!
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| Special delivery from PPW Toys |
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| Plush MPH and Toy Story 3 Operation |
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| Toy Story 3 MPH set |
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| Some great MPH t-shirts |
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| The Hasbro delivery was so big, Neya and Collin could fit in the box with room to spare! |
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| 12-16-12...Neya & Santa |
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| 12-16-12...Collin & Santa |
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| 12-25-12...opening Christmas presents |
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| "Tater Tot" |
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| Guardian Knight Mr. Potato Head |
Tonight Collin finished his second course of maintenance chemo; this course has gone as smoothly as the first with no nausea or drop in blood counts. Although his fatigue isn't as extreme as it was after the radiation, Collin still tires easily and needs to take rests throughout the day, especially from mid-morning/early afternoon on. He also asks to go to bed between 6:00-7:00 every evening. I mentioned this to his oncologist, and she had us come into clinic early yesterday morning to check his cortisol level with his bloodwork. As it turns out, his level was extremely low (normal is between 1.7 and 22.7; Collin's was below .2). I've done some online research, and it seems this could be a potentially life-threatening condition if it continued undetected. Thankfully we've caught it, and we may be consulting with an endocrinologist very soon to further investigate and treat the issue.
With the first full week of 2013 (starting Jan. 7), our schedule will go back to being extremely busy! For starters, Collin's therapies will begin again. It has been five months since Collin has had therapy, and I am eager for his therapists to see how much progress he's made since they saw him in July. He has a PT eval Monday morning, an OT eval Wednesday morning, and a ST eval Friday morning. On Thursday of that week (Jan. 10) he has his next MRI. Then the next day, after his speech therapy eval, we have an appointment with his oncologist and neurosurgeon to review the MRI results. It's hard to believe that scan time is upon us again already. Although I try to ignore the fear that is always lurking in my soul and not let it get the best of me, scan time tends to bring it to the surface where it threatens to take over, because I know all too well how things can change in a heartbeat. We'll either hear "all clear" and be handed another three months of "normal" life, or we'll get unwanted news that will push us back into the pit of despair where we will desperately claw our way out to the next treatment option to try, if there are any options left. Please, please let the MRI be clear!!!
Tuesday, December 4, 2012
Tuesday, December 4, 2012
Collin's first round of maintenance medication, which was given for two weeks in November, went well. It didn't make him sick to his stomach, and his blood counts weren't hit hard like they could have been. The biggest side effect was the dry skin from the Accutane. His second round was postponed for the eye surgery that was scheduled for the beginning of this month. Collin and I flew to Houston on Thursday November 30, the surgery took place yesterday, and we will fly back home to Harrisburg on Saturday December 8. Overall, yesterday's surgery went well; it just didn't go quite as planned.
Just to review some background...In 2010 as a result of either his brain surgery or hydrocephalus, some of the nerves that control Collin's eyes and facial muscles were damaged, which caused the right side of his face to be paralyzed and his eyes to turn in (looking crossed). Back in 2011, Collin had the first surgery to try to straighten his eyes. At that time, the ophthalmologist (Dr. Weinstein) tightened the muscles on the outside of each of the eyeballs, and injected botox into the inner muscles of each eyeball to help those muscles relax so the outer muscles could more easily pull the eyes outward. There was an immediate change in Collin's eyes, but over time they turned back in, although not as far as they originally were. Dr. Weinstein then recommended a second procedure, where he would loosen the same inside muscles that he had injected the botox into, to help the eyes turn out again. He also recommended a third procedure where he would move the muscles from the top and bottom of the eyes, which move the eyes up and down, to the outside of the eyeballs, to further help the weak outer muscles pull the eyes outward.
Before proceding with a second and third surgery, we took Collin back to the opthalmologist (Dr. Frankel) who found the pressure on his optic nerve which lead to the brain tumor diagnosis in 2010, to get a second opinion. He didn't feel the second procedure would benefit Collin at all, but did agree with the third recommended procedure. However, he said we would need to find a skilled surgeon to do the procedure. Then Collin relapsed, and scheduling more eye surgery was put on hold.
So over this past summer, while we were in Houston for Collin's proton radiation, we saw an ophthalmologist (Dr. Edmond) who also agreed that the third procedure would be best way to go. Furthermore, she had done the procedure many times before, so we felt comfortable having her do the surgery. She also wanted to do something to lessen the vertical nystagmus, or bobbing up and down of the eyes, that is also a result of the nerve damage. That is how we ended up back in Houston this week for Collin's eye surgery.
We left the house yesterday at 4:30 am to be at Texas Children's Hospital by 6:00 am for the 7:30 surgery. Before the surgery, he was given a pair of TCH pajamas to put on for the surgery, and then take home. He was so excited about this, and he couldn't wait to "tell Neya and Daddy about my new jammies!" I left Collin asleep in the operating room around 7:45, and he was finished around 9:45. Dr. Edmond's plan was to move half of the muscles from the top and bottom of the right eye to the outer edge of the eye to pull it outward, and then tighten the remaining muscle below each eye to lessen the vertical bobbing. During the surgery however, she found that the inner muscle of the right eye was extremely tight, tighter than she has ever seen before. This happened because the outer muscle of the eye was so weak that it just couldn't counteract the inner muscle. So, she ended up loosening the inner muscle, which enabled the eye to straighten pretty well right away; then she tigtened the muscles below each eye. She didn't move any muscles to the outside of the right eye as originally planned, because she didn't want him to go from looking at his nose to looking at his ear. If any further adjustments need to be made, they can be done at a future date.
Collin woke from anesthesia fairly quickly and calmly, but was very drowsy due to a dose of morphine. We stayed by his side and let him sleep for a few hours in recovery before taking him home. He held onto my hand for the whole time, and would periodically ask, "Are you still here with me, Mom?" Once we got him home, he rested on the couch, and ate soup and crackers, which thankfully he kept down.
Collin's eyes were swollen closed after the surgery. This morning his right eye, which is more swollen than the left eye since it had more done to it, was stuck closed. It took me quite some time this morning to clean it up so that it could open. Poor Collin just cried the whole time, because he is understandably anxious when anyone touches his eyes. He is on some Tylenol with Codeine for pain, and antibiotic eye drops to prevent infection. Today I've also applied some cool compresses to help any discomfort and reduce swelling. As the day has gone on, his right eye has opened some more, and from what I can see, his eye looks more centered. The vertical nystagmus in the left eye does seem greatly improved. We will follow-up with Dr. Edmond Thursday. As usual, Collin has been a brave trooper, and is in good spirits.
Just to review some background...In 2010 as a result of either his brain surgery or hydrocephalus, some of the nerves that control Collin's eyes and facial muscles were damaged, which caused the right side of his face to be paralyzed and his eyes to turn in (looking crossed). Back in 2011, Collin had the first surgery to try to straighten his eyes. At that time, the ophthalmologist (Dr. Weinstein) tightened the muscles on the outside of each of the eyeballs, and injected botox into the inner muscles of each eyeball to help those muscles relax so the outer muscles could more easily pull the eyes outward. There was an immediate change in Collin's eyes, but over time they turned back in, although not as far as they originally were. Dr. Weinstein then recommended a second procedure, where he would loosen the same inside muscles that he had injected the botox into, to help the eyes turn out again. He also recommended a third procedure where he would move the muscles from the top and bottom of the eyes, which move the eyes up and down, to the outside of the eyeballs, to further help the weak outer muscles pull the eyes outward.
Before proceding with a second and third surgery, we took Collin back to the opthalmologist (Dr. Frankel) who found the pressure on his optic nerve which lead to the brain tumor diagnosis in 2010, to get a second opinion. He didn't feel the second procedure would benefit Collin at all, but did agree with the third recommended procedure. However, he said we would need to find a skilled surgeon to do the procedure. Then Collin relapsed, and scheduling more eye surgery was put on hold.
So over this past summer, while we were in Houston for Collin's proton radiation, we saw an ophthalmologist (Dr. Edmond) who also agreed that the third procedure would be best way to go. Furthermore, she had done the procedure many times before, so we felt comfortable having her do the surgery. She also wanted to do something to lessen the vertical nystagmus, or bobbing up and down of the eyes, that is also a result of the nerve damage. That is how we ended up back in Houston this week for Collin's eye surgery.
We left the house yesterday at 4:30 am to be at Texas Children's Hospital by 6:00 am for the 7:30 surgery. Before the surgery, he was given a pair of TCH pajamas to put on for the surgery, and then take home. He was so excited about this, and he couldn't wait to "tell Neya and Daddy about my new jammies!" I left Collin asleep in the operating room around 7:45, and he was finished around 9:45. Dr. Edmond's plan was to move half of the muscles from the top and bottom of the right eye to the outer edge of the eye to pull it outward, and then tighten the remaining muscle below each eye to lessen the vertical bobbing. During the surgery however, she found that the inner muscle of the right eye was extremely tight, tighter than she has ever seen before. This happened because the outer muscle of the eye was so weak that it just couldn't counteract the inner muscle. So, she ended up loosening the inner muscle, which enabled the eye to straighten pretty well right away; then she tigtened the muscles below each eye. She didn't move any muscles to the outside of the right eye as originally planned, because she didn't want him to go from looking at his nose to looking at his ear. If any further adjustments need to be made, they can be done at a future date.
Collin woke from anesthesia fairly quickly and calmly, but was very drowsy due to a dose of morphine. We stayed by his side and let him sleep for a few hours in recovery before taking him home. He held onto my hand for the whole time, and would periodically ask, "Are you still here with me, Mom?" Once we got him home, he rested on the couch, and ate soup and crackers, which thankfully he kept down.
Collin's eyes were swollen closed after the surgery. This morning his right eye, which is more swollen than the left eye since it had more done to it, was stuck closed. It took me quite some time this morning to clean it up so that it could open. Poor Collin just cried the whole time, because he is understandably anxious when anyone touches his eyes. He is on some Tylenol with Codeine for pain, and antibiotic eye drops to prevent infection. Today I've also applied some cool compresses to help any discomfort and reduce swelling. As the day has gone on, his right eye has opened some more, and from what I can see, his eye looks more centered. The vertical nystagmus in the left eye does seem greatly improved. We will follow-up with Dr. Edmond Thursday. As usual, Collin has been a brave trooper, and is in good spirits.
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