Collin and I kicked off our day with an inpromptu trip to the grocery store for a jello breakfast this morning. The poor kid was starving, but he was only allowed clear liquids and Jello until 10 am. Unfortunately I didn't think to make sure I had Jello in the fridge ahead of time, so after Neya left for school, away we went. After that, Collin was much happier. His MRI was scheduled for noon, and thankfully they were running right on schedule. Everything went very smoothly.
Collin's oncologist called this evening after Collin's neurosurgeon had a chance to review the scan. All of the tumors enhanced much brighter this time, so they were easier to see. There isn't much change, so they're considering him "stable." However, Dr. Comito wants to be a bit more aggressive than the maintenance therapy, so we are stopping that for now, and next Tuesday Collin will start on another oral chemo (Temodar) for five days. On Friday, June 8, he'll be admitted to the hospital for the weekend for a round of Cytoxan. He'll probably come home Sunday. It should be just like the round of chemo he did just before Thanksgiving. Then his counts will drop, we'll once again do the Neupogen injections at home, and he'll most likely be re-admitted to the hospital a week later with a neutropenic fever. Of course that weekend is Neya's dance recital, but my parents will be here for it, so it'll be nice to have the extra help.
Dr. Comito will send the MRI to MD Anderson on Monday, and Collin will have another MRI in about a month. Hopefully that will show a good response to the chemo, just as he had last December following the round of chemo in November. Then probably around mid July we will head to Houston, where we will spend the rest of the summer getting radiation.
While I'm happy today's scan was stable, I'm once again overwhelmed at the thought of what lies ahead of us these next few months. Just this morning I was thinking it's time to trim Collin's hair (at least around his ears), and now tonight I realize between the chemo and the radiation, he'll lose it once again. The upcoming hospitalizations will be short, and we'll be in familiar surroundings with our favorite caregivers, but it's still stressful and tiring. Then when I think about the (at least) seven weeks away from home, family, and friends, the trip we had hoped to make to the beach, the swim lessons and dance class I had signed Neya up for, Collin's therapies that will again be put on hold, and wonder what Collin will be like after we radiate his brain and spine, I feel...sad. How much more will cancer take from us?
Friday, June 1, 2012
Saturday, May 19, 2012
Strength of an Egg
I saw this a while back, and recently came across it again. It describes perfectly how I feel.
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.
Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
~By Juliet Freitag
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.
Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
~By Juliet Freitag
Friday, May 18, 2012
It's been a busy two weeks since we were told that Collin has four to five new tumors in his brain and he was restarted on the maintenance drug therapy. He is tolerating the medications very well, with no nausea or other side effects. He is a typical three-year-old...full of energy, always on the go, testing limits, and asking questions. You know that question that all pre-schoolers ask: "Why?" Collin has started asking it, often. Recently one evening, I called him over to take his medicine, and he said to me, "Why I take medicine?" I was totally taken aback. I said, "To make you healthy so you can live a long, happy life." He took the medicine, and as he walked away to go back to playing, he said "I feel good!" This week, he also asked me, "Why I go to speech therapy?" I said, "Well, you know how you get frustrated when we can't understand what you're trying to tell us? You go to speech therapy to help you learn to speak more clearly, so we can understand you better." Collin has enjoyed returning to his therapies, and this morning when he asked me if we were going to therapy and I told him that he didn't have any appointments today, he cried!
All three of his therapists notice improvement since they last saw him in February. His occupational therapist agrees that his right hand is stronger and that he is using it more; he still needs help with things like motor planning and ADLs. His physical therapist noticed improvement in his walking, but he still needs to work on things like balance, running, jumping, etc. His speech evaluation showed that he's where he should be for his age as far as what he understands, but because of his difficulty planning and coordinating the movements necessary for speech (apraxia), his ability to speak clearly enough to convey what he wants to say is below the level of a two-year-old. As his speech therapist said, we need to work on his speech more than we do his language. She also does not feel at this point, since it's been two years since his brain surgery, that he will regain any more movement on the right side of his face. I wasn't surprised by any of this, but it was still sad to hear.
Earlier this month, the wonderful Knights of Columbus in Lower Paxton Twp. held a roast beef dinner fundraiser for Collin. Once again, we were humbled by the support of everyone who worked hard to make the event happen, and those who came to show their support and have a delicious dinner! It is very difficult to find the words to express how much we appreciate the support of family, friends, and the community. We are truly grateful!!
This past week Collin was featured in an article in a local paper in conjunction with a Four Diamonds Fund fundraiser we are speaking at this coming Thursday. This will be our first time at the event, called Kuppy's Cruise In. With Neya's help, Collin will have to choose his favorite car or motorcycle. Then we will share Collin's story, talk about the Four Diamonds Fund, and present the winner with a plaque. It will be a fun evening!
The next two weeks leading up to the MRI on June 1 will be just as busy as the last two weeks, but that's probably a good thing. I'm trying hard not to think about the MRI, or my fears...
All three of his therapists notice improvement since they last saw him in February. His occupational therapist agrees that his right hand is stronger and that he is using it more; he still needs help with things like motor planning and ADLs. His physical therapist noticed improvement in his walking, but he still needs to work on things like balance, running, jumping, etc. His speech evaluation showed that he's where he should be for his age as far as what he understands, but because of his difficulty planning and coordinating the movements necessary for speech (apraxia), his ability to speak clearly enough to convey what he wants to say is below the level of a two-year-old. As his speech therapist said, we need to work on his speech more than we do his language. She also does not feel at this point, since it's been two years since his brain surgery, that he will regain any more movement on the right side of his face. I wasn't surprised by any of this, but it was still sad to hear.
Earlier this month, the wonderful Knights of Columbus in Lower Paxton Twp. held a roast beef dinner fundraiser for Collin. Once again, we were humbled by the support of everyone who worked hard to make the event happen, and those who came to show their support and have a delicious dinner! It is very difficult to find the words to express how much we appreciate the support of family, friends, and the community. We are truly grateful!!
This past week Collin was featured in an article in a local paper in conjunction with a Four Diamonds Fund fundraiser we are speaking at this coming Thursday. This will be our first time at the event, called Kuppy's Cruise In. With Neya's help, Collin will have to choose his favorite car or motorcycle. Then we will share Collin's story, talk about the Four Diamonds Fund, and present the winner with a plaque. It will be a fun evening!
The next two weeks leading up to the MRI on June 1 will be just as busy as the last two weeks, but that's probably a good thing. I'm trying hard not to think about the MRI, or my fears...
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| 5/10/12 - Neya & Collin |
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| 5/12/12 - Neya's First Communion |
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| "Haha cancer, you're not getting me down!" |
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| The label on one of Collin's meds...kind of an oxymoron, don'tcha think? |
Friday, May 4, 2012
Friday, May 4, 2012
Today we met with Collin's oncologist and neurosurgeon at Hershey to get their input on Tuesday's MRI results. I guess I expected them to talk about the chances that the suspicious area was inflammation versus tumor. There was no way in a million years I expected what we were told.
Collin's neurosurgeon reviewed the MRI from Tuesday, and compared it with MRIs from the last eight months. Not only is he certain that the area in question is recurrent tumor, he said there is a total of four to five tumors in different areas of Collin's brain. In previous MRIs, the areas that are now tumors were not yet big enough to see or be questionable. So it seems as though the 3F8 treatment wasn't effective, and now that Collin has been off the maintenance therapy that he did for six weeks before stopping it to do the 3F8 treatment, the tumors have had time to grow.
So, tonight Collin has gone back on the maintenance therapy. He will have another MRI on June 1. If that MRI shows improvement, he will continue on the maintenance therapy. If there is no improvement, or God forbid, the MRI is worse, Collin will go back on more intense chemo, like what he did last November. In the meantime, we will begin looking into cranio-spinal radiation.
Tonight, I am in shock. Terrified. Heartbroken. Angry. Disappointed. Nauseous. My heart is in my throat, and it's hard to breathe. I can't focus on anything. I look at Collin's sweet face, listen to his infectious giggle, and wonder how the hell I will survive if he's ever taken away from me.
Collin's neurosurgeon reviewed the MRI from Tuesday, and compared it with MRIs from the last eight months. Not only is he certain that the area in question is recurrent tumor, he said there is a total of four to five tumors in different areas of Collin's brain. In previous MRIs, the areas that are now tumors were not yet big enough to see or be questionable. So it seems as though the 3F8 treatment wasn't effective, and now that Collin has been off the maintenance therapy that he did for six weeks before stopping it to do the 3F8 treatment, the tumors have had time to grow.
So, tonight Collin has gone back on the maintenance therapy. He will have another MRI on June 1. If that MRI shows improvement, he will continue on the maintenance therapy. If there is no improvement, or God forbid, the MRI is worse, Collin will go back on more intense chemo, like what he did last November. In the meantime, we will begin looking into cranio-spinal radiation.
Tonight, I am in shock. Terrified. Heartbroken. Angry. Disappointed. Nauseous. My heart is in my throat, and it's hard to breathe. I can't focus on anything. I look at Collin's sweet face, listen to his infectious giggle, and wonder how the hell I will survive if he's ever taken away from me.
Tuesday, May 1, 2012
Tuesday, May 1, 2012
Collin had his MRI this morning, and we met with the doctor this afternoon to review the results. They weren't what we wanted to hear.
The doctor called the MRI "suspicious." It seems there is a new spot, in a new location, that wasn't there before. The problem is, the area doesn't enhance, which means it doesn't get brighter with the contrast dye. So, they're not sure if it is a new tumor, or if it is just some inflammation from the 3F8 treatment in March.
So, over the next few days and weeks, the doctors will be gathering the information that will help us decide what to do next. They sampled Collin's CSF through the ommaya reservoir to see whether there are tumor cells present in it, and will let us know the results tomorrow. If there is enough frozen tissue left from 2010, they will test it for the protein needed for a treatment similar to what he did in March, called 8H9. If his original tumor has the protein, we will move forward with the 8H9 treatment. If not, we may be looking at restarting the metronomic therapy he did before the 3F8 treatment, and then doing cranio spinal radiation sooner than we had hoped. Collin will have another MRI in 3 to 4 weeks to keep a close watch for any any further changes.
Needless to say, I'm scared to death, yet again. I just can't believe this is happening. I don't know how I'm supposed to function over the next few weeks, just waiting......
Sunday, April 29, 2012
Sunday, April 29, 2012
Just a quick update...Collin has been great over the last month. He is feeling well, loves to play, and is getting into everything, just like a typical three-year-old! He finds joy in even the smallest things; it's one of my favorite things about him, and it's a lesson we should all be reminded of. So is his ability to constantly pick himself up and keep going (literally and figuratively!) Every time he stumbles and falls, even if he sheds a few tears because the fall hurt, he gets back up and says, "I ok, I fine!" and keeps going. He's an amazing little guy.
Collin has been on a stronger antibiotic, Vancomycin, to get rid of the c-diff, which finally seems to be improving. He took the antibiotic four times a day (every six hours) for two weeks, then twice a day for a week. This week he will take it once a day every day, and then he will take it three times a week for four weeks. Then hopefully we will be finished dealing with this c-diff! Tomorrow we head back to Sloan Kettering in NY for Collin's post-treatment MRI on Tuesday. I have to believe this treatment worked to kill any lurking cancer cells, but I'd be lying if I said part of me isn't terrified. He's been off treatment for a month now, and he had only been off treatment for about two months before his relapse was found last October. Once cancer is in your life, you can never let your guard down; you always wonder if/when it will creep back in and turn your world upside down again. The fear is always lurking. Please say a prayer that Tuesday's MRI will be clear!
Collin has been on a stronger antibiotic, Vancomycin, to get rid of the c-diff, which finally seems to be improving. He took the antibiotic four times a day (every six hours) for two weeks, then twice a day for a week. This week he will take it once a day every day, and then he will take it three times a week for four weeks. Then hopefully we will be finished dealing with this c-diff! Tomorrow we head back to Sloan Kettering in NY for Collin's post-treatment MRI on Tuesday. I have to believe this treatment worked to kill any lurking cancer cells, but I'd be lying if I said part of me isn't terrified. He's been off treatment for a month now, and he had only been off treatment for about two months before his relapse was found last October. Once cancer is in your life, you can never let your guard down; you always wonder if/when it will creep back in and turn your world upside down again. The fear is always lurking. Please say a prayer that Tuesday's MRI will be clear!
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| 4/27/12 - Collin with his best bud (or should I say "best spud"?) at Tanger Outlets in Hershey. |
Tuesday, April 17, 2012
Tuesday, April 17, 2012
We've been home for a little over two weeks now, and I've managed to keep very busy. I scheduled Collin's therapies to start again in May, because I wanted to give myself and Collin a little break from constantly being on the go. I knew I had to get caught up on things around the house, and that would be easier to do it I wasn't constantly running to various appointments. During the four days every week that Collin and I were home between trips to NY in March, I was so physically, mentally, and emotionally burned out that I wasn't doing much around the house when I was home.
Then the need to get caught up turned suddenly turned into an overwhelming urge to spring clean and purge, and unfortunately it didn't pass. I think I want to feel like I have control over something in my life. The team at Sloan-Kettering requested Collin's follow-up MRI to be done on March 2, but the schedule isn't made far in advance and they won't let us know until almost the last minute when we have to be there, so I feel like I'm just waiting. I'd be lying if I said I wasn't worried; I try to have faith that the 3F8 treatment worked to kill off any remaining cancer cells in Collin's body, but the last time he was completely off treatment, the cancer returned in just under two months. That's one of the hard new realities since cancer entered our lives in 2010 - and recurred in 2011 - no matter how well Collin is doing, fear is always lurking. So, maybe I'm trying to channel my nervous energy into something useful, and trying to get things ready for whatever comes next. The silver lining is that I'm starting to feel like I have a new house. It's getting cleaner and more organized than it's been in quite a while!
Collin is feeling well and is enjoying being home. We're still dealing with diarrhea; he was tested again by our oncologist and was still positive for c-diff, so she put him on a stronger antibiotic for two weeks. His fingers were accidentally closed in the front door on Easter Sunday, but they were x-rayed the next day and thankfully weren't broken. His latest obsessions are Blue's Clues and Barney. He's been "helping" me spring clean. He loved hunting for Easter eggs, and plays with Neya every minute that he can. She doesn't get out of school until 3:45, but every day around 1:30 Collin starts asking if we can pick her up yet. When I tell him it's too early, he pleads with me. Then when we do finally pick her up, he tells her "I so excited see you!!" It's very cute.
Over the last few weeks, there have been too many kiddos who've earned their wings. It's truly heartbreaking. I yearn for the day when no parent has to watch their child suffer because of cancer, see their lives and the lives of their children permanently altered because of cancer, or mourn the loss of their innocent lives because of cancer. I yearn for better treatments. I yearn for a cure. I really hate cancer.
Then the need to get caught up turned suddenly turned into an overwhelming urge to spring clean and purge, and unfortunately it didn't pass. I think I want to feel like I have control over something in my life. The team at Sloan-Kettering requested Collin's follow-up MRI to be done on March 2, but the schedule isn't made far in advance and they won't let us know until almost the last minute when we have to be there, so I feel like I'm just waiting. I'd be lying if I said I wasn't worried; I try to have faith that the 3F8 treatment worked to kill off any remaining cancer cells in Collin's body, but the last time he was completely off treatment, the cancer returned in just under two months. That's one of the hard new realities since cancer entered our lives in 2010 - and recurred in 2011 - no matter how well Collin is doing, fear is always lurking. So, maybe I'm trying to channel my nervous energy into something useful, and trying to get things ready for whatever comes next. The silver lining is that I'm starting to feel like I have a new house. It's getting cleaner and more organized than it's been in quite a while!
Collin is feeling well and is enjoying being home. We're still dealing with diarrhea; he was tested again by our oncologist and was still positive for c-diff, so she put him on a stronger antibiotic for two weeks. His fingers were accidentally closed in the front door on Easter Sunday, but they were x-rayed the next day and thankfully weren't broken. His latest obsessions are Blue's Clues and Barney. He's been "helping" me spring clean. He loved hunting for Easter eggs, and plays with Neya every minute that he can. She doesn't get out of school until 3:45, but every day around 1:30 Collin starts asking if we can pick her up yet. When I tell him it's too early, he pleads with me. Then when we do finally pick her up, he tells her "I so excited see you!!" It's very cute.
Over the last few weeks, there have been too many kiddos who've earned their wings. It's truly heartbreaking. I yearn for the day when no parent has to watch their child suffer because of cancer, see their lives and the lives of their children permanently altered because of cancer, or mourn the loss of their innocent lives because of cancer. I yearn for better treatments. I yearn for a cure. I really hate cancer.
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