Here are some pictures from her parents Caringbridge page:
May 3, 2012
Meet Zoey
Zoey was diagnosed with Neuroblastoma last August. Miraculous she did not need surgery or chemotherapy for her form of neuroblastoma. It even shrunk some on its own. Her parents would just fly here and check in with the doctors and do scans. My understanding is that on a recent trip to check-in, a last minute call was made to remove her tumor which was located in her neck. Since having her surgery on April 24th, she has been in the PICU. She is having a difficult time breathing on her own and though she was extubated on Tuesday, it seems they had to re-intubate her over the past 24 hours. Her parents and grandparents keep up a Caringbridge page; if your interested, search zoeybrickley. She and her family need prayers right now to get sweet Zoey off of respiratory support!
Here are some pictures from her parents Caringbridge page:
Here are some pictures from her parents Caringbridge page:
May 2, 2012
May 2, 2012
**I apologize in advance because I know some posts are sounding negative or depressing lately. It's the environment. We've been cooped up in a hospital for too long a span of time all at once and it's taking it's toll.**
This afternoon we started our sixth and final round of chemo. I'm a little nervous because we are doing a different chemo cocktail than ever before so we aren't sure how he'll react. We are also giving it at 100% strength. Remember, "protocol" said we had to reduce his chemo strength to 50% because his counts were down for so long after the fourth round. Well, these doctors don't do reduced strength chemo. So back up we go, with two meds he has had before and a third new med. This is usually the round that would give him mucusitis, but the drug that causes that is the one we are replacing with the new med. The doctors here like to use this new med from time to time and George and I like the idea of keeping those pesky cancer cells on their toes. It's kind of like giving it the old one-two punch...but wait...here comes the third hit you weren't expecting so it knocks you off your feet. Pitiful metaphor, but whatever works.
Then there are our roomates...The child is upset a lot...a lot, a lot. On the one hand it's difficult to live with, but on the other hand it's sad. We know he's upset, but we have no idea what the phrases he says over and over mean. He seems to rotate through three or four phrases. I've caught his mother telling the nurses that he's in pain and that he starts panicking and complains he hurts all over. I also found out their Greek and they are from Athens. All in all the roommate thing is not easy. In the PICU, there is always noise so even when folks are sleeping you don't feel bad about making noise. In our current situation, if our roomies are sleeping, you could hear a pin drop. Thankfully, everything we should have to come here for after this should be out patient.
Thank you, thank you, thank you! I'm so over hospitals its ridiculous.
**I'm about to vent so feel free to skip over this part**
Everything is wearing on us, from the big stuff to the little stuff like the physical therapist telling us we should do out patient PT when we get home to help Clayton sit up good and keep his scoliosis from getting worse. Seriously? Where is captain obvious when you need him?
Dear Physical Therapist we saw today:
1. Clayton isn't "sitting up good" because he's been in bed for more than a week and he's being lazy.
2. This is what he does in the hospital; he lays down because he doesn't feel good and he's depressed. Take him home and he's a different child all together. When we tell you that, listen.
3. Don't speak to me about my child's scoliosis. We have a spectacular orthopedic surgeon who has a handle on things and your opinion is not needed and sure as hec isn't wanted.
4. We are here for cancer treatment and surgery. If it doesn't have to do with cancer or surgery recovery then it isn't your business, so buzz off.
5. George and I do not have time and will not ask off work for unnecessary PT. You are diluted if you think we would.
6. You don't know what your talking about and trying to act like you do is not an attractive quality.
7. You are welcome to "work" with my son while we are here. Beyond that, don't get pushy with me. It doesn't go over very well.
8. If there are any health concerns with my child, rest assured I am aware of them. But right now I am focused on the only one that is threatening his life...CANCER...not scoliosis. So don't try to sell me on $&@? that isn't important to his battle with cancer. I've got this, so BACK OFF!!!
**I think I'm done. Sorry about that**
On a bright note, we booked our flight to come home! Monday we will be home once again! (Unless God forbid something happens...) We obviously had expected to come home much sooner (us being naive), but in reality we can't come home until the surgeon discharges us. Since the surgeon was not going to be discharging us for a few days, we went ahead and started chemo while we're already here. Had it been another surgeon, I might have questioned making us stay this long, but when it is the best in the world you just shut up and do what he says. See, I'm not completely rebellious; there is a method to my rebellion. If I question a doctor's moves there is a good reason.
Random bits:
Zoey finally got extubated yesterday and she's working hard to stay that way right now. Keep her in your prayers.
Clayton has started growing back some of the hair he lost. He is growing it back on his head, arms and legs :)
(see below)
And here are pics of our room now...
This afternoon we started our sixth and final round of chemo. I'm a little nervous because we are doing a different chemo cocktail than ever before so we aren't sure how he'll react. We are also giving it at 100% strength. Remember, "protocol" said we had to reduce his chemo strength to 50% because his counts were down for so long after the fourth round. Well, these doctors don't do reduced strength chemo. So back up we go, with two meds he has had before and a third new med. This is usually the round that would give him mucusitis, but the drug that causes that is the one we are replacing with the new med. The doctors here like to use this new med from time to time and George and I like the idea of keeping those pesky cancer cells on their toes. It's kind of like giving it the old one-two punch...but wait...here comes the third hit you weren't expecting so it knocks you off your feet. Pitiful metaphor, but whatever works.
Then there are our roomates...The child is upset a lot...a lot, a lot. On the one hand it's difficult to live with, but on the other hand it's sad. We know he's upset, but we have no idea what the phrases he says over and over mean. He seems to rotate through three or four phrases. I've caught his mother telling the nurses that he's in pain and that he starts panicking and complains he hurts all over. I also found out their Greek and they are from Athens. All in all the roommate thing is not easy. In the PICU, there is always noise so even when folks are sleeping you don't feel bad about making noise. In our current situation, if our roomies are sleeping, you could hear a pin drop. Thankfully, everything we should have to come here for after this should be out patient.
Thank you, thank you, thank you! I'm so over hospitals its ridiculous.
**I'm about to vent so feel free to skip over this part**
Everything is wearing on us, from the big stuff to the little stuff like the physical therapist telling us we should do out patient PT when we get home to help Clayton sit up good and keep his scoliosis from getting worse. Seriously? Where is captain obvious when you need him?
Dear Physical Therapist we saw today:
1. Clayton isn't "sitting up good" because he's been in bed for more than a week and he's being lazy.
2. This is what he does in the hospital; he lays down because he doesn't feel good and he's depressed. Take him home and he's a different child all together. When we tell you that, listen.
3. Don't speak to me about my child's scoliosis. We have a spectacular orthopedic surgeon who has a handle on things and your opinion is not needed and sure as hec isn't wanted.
4. We are here for cancer treatment and surgery. If it doesn't have to do with cancer or surgery recovery then it isn't your business, so buzz off.
5. George and I do not have time and will not ask off work for unnecessary PT. You are diluted if you think we would.
6. You don't know what your talking about and trying to act like you do is not an attractive quality.
7. You are welcome to "work" with my son while we are here. Beyond that, don't get pushy with me. It doesn't go over very well.
8. If there are any health concerns with my child, rest assured I am aware of them. But right now I am focused on the only one that is threatening his life...CANCER...not scoliosis. So don't try to sell me on $&@? that isn't important to his battle with cancer. I've got this, so BACK OFF!!!
**I think I'm done. Sorry about that**
On a bright note, we booked our flight to come home! Monday we will be home once again! (Unless God forbid something happens...) We obviously had expected to come home much sooner (us being naive), but in reality we can't come home until the surgeon discharges us. Since the surgeon was not going to be discharging us for a few days, we went ahead and started chemo while we're already here. Had it been another surgeon, I might have questioned making us stay this long, but when it is the best in the world you just shut up and do what he says. See, I'm not completely rebellious; there is a method to my rebellion. If I question a doctor's moves there is a good reason.
Random bits:
Zoey finally got extubated yesterday and she's working hard to stay that way right now. Keep her in your prayers.
Clayton has started growing back some of the hair he lost. He is growing it back on his head, arms and legs :)
(see below)
And here are pics of our room now...
May 1, 2012
May 1, 2012
Sorry for the delayed post. Apparently the POU has a high turnover rate. We have now been moved to the PEDS regular in patient floor. Here, we are sharing a room with another family. The room itself is nice and we have a decent sized area behind our privacy curtain. The oddest thing about the situation, is that the family on the other side of the curtain is foreign and they speak their language...not English. I feel like I am listening to one of those language learning tapes that helps you learn common sayings, only there is never any translation. Not sure where they're from though.
Anyway on to what everyone is waiting on...the plan, the prognosis and the pathology.
I'll start with the pathology and the prognosis. I've said before, the tumor was originally the size of a grapefruit growing off his right adrenal gland, crossing his midline and wrapping around the vena cava and his renal arteries. He had minimal bone marrow involvement and also "highlighted" on scans with activity around some lymph nodes, a couple of vertebrate and his right femur. He had a very good response from chemo and the tumor shrunk nicely to a point where it was no longer interfering with his vena cava and to where his bone marrow was testing negative for cancer cells. As for the "highlighted" areas, we have not done that scan since diagnosis and will not do it again for about a month.
When Dr. La Quaglia resected his tumor, he also biopsied his liver (which often becomes diseased) and searched for any suspicious lymph nodes or other areas. The pathology report showed all lymph nodes removed were benign and that the liver biopsy was also benign. Awesome news! The main mass showed effects consistent with treatment and showed that the "surgical margin" was free of viable tumor. What that means is that the chemo had shrunk the tumor and what remained of it was dead around the outside where the surgeon made his cuts. All good stuff!
**If you prefer the short sweet version, skip down a ways**
There is no denying though that neuroblastoma is a VERY aggressive form of cancer. It is very treatable in children younger than 18 months who are diagnosed at stages 1, 2, 3 or 4s. However, stage 4 is trickier. Clayton was diagnosed at stage 4. Here are the statistics:
Stage 4 chance of survival- 30%
Stage 4 chance of relapse after successful treatment- 40%
Children of all stages who succumb to the disease within five years of diagnosis- 25%
There are children who beat this cancer and never have another problem. There are children who spend 5+ years fighting this cancer. There are children who have successful treatment, relapse within a few months and rapidly go down hill. There are children who have successful treatment, spend some time in remission and then relapse and go on to have various outcomes. This disease is tricky. It is aggressive. It is hard to predict. It is because we know all this, that I gave you such a long explanation about his prognosis.
What I can tell you is that the doctors are encouraged by Clayton's response to chemo, the pathology report and a particular characteristic of the tumor. They feel our long term prognosis is good. But they, like us, know that we still have a battle ahead. We have to stay on our toes.
The short and sweet version: Based on his response to chemo and the pathology findings, we're cautiously optimistic about is long term prognosis. :)
The plan from here is to start the sixth and FINAL round of chemo tomorrow, repeat all his scans and bone marrow tests in about a month and then start his first round of 3f8 on June 11. Given how good his pathology report was, it is even harder to imagine doing 3f8. But we know how necessary it is. In fact, our initial talk with the neuroblastoma doctor before surgery indicated that we should have been planning to do immunotherapy all along. The way it works, you have COG (Children's Oncology Group) which has 14.18 and then you have MSKCC which has 3f8. Both are forms of immunotherapy meant to do the same thing. While there is a lot of debate about the benefits, or lack there of, of doing a stem cell transplant, there is no debate about the importance of doing immunotherapy. The doctors here say that whether you do their immunotherapy or COG's that there is no question, that if your child has neuroblastoma then you should do immunotherapy as part of your initial treatment. Something that the doctors at USACW failed to mention to us. Not one single mention...ever.
That is where things are going forward.
More later...
P.S. Clayton no longer has anything hooked to him other then IV fluids running through his Hickman. Woot! Woot!
Anyway on to what everyone is waiting on...the plan, the prognosis and the pathology.
I'll start with the pathology and the prognosis. I've said before, the tumor was originally the size of a grapefruit growing off his right adrenal gland, crossing his midline and wrapping around the vena cava and his renal arteries. He had minimal bone marrow involvement and also "highlighted" on scans with activity around some lymph nodes, a couple of vertebrate and his right femur. He had a very good response from chemo and the tumor shrunk nicely to a point where it was no longer interfering with his vena cava and to where his bone marrow was testing negative for cancer cells. As for the "highlighted" areas, we have not done that scan since diagnosis and will not do it again for about a month.
When Dr. La Quaglia resected his tumor, he also biopsied his liver (which often becomes diseased) and searched for any suspicious lymph nodes or other areas. The pathology report showed all lymph nodes removed were benign and that the liver biopsy was also benign. Awesome news! The main mass showed effects consistent with treatment and showed that the "surgical margin" was free of viable tumor. What that means is that the chemo had shrunk the tumor and what remained of it was dead around the outside where the surgeon made his cuts. All good stuff!
**If you prefer the short sweet version, skip down a ways**
There is no denying though that neuroblastoma is a VERY aggressive form of cancer. It is very treatable in children younger than 18 months who are diagnosed at stages 1, 2, 3 or 4s. However, stage 4 is trickier. Clayton was diagnosed at stage 4. Here are the statistics:
Stage 4 chance of survival- 30%
Stage 4 chance of relapse after successful treatment- 40%
Children of all stages who succumb to the disease within five years of diagnosis- 25%
There are children who beat this cancer and never have another problem. There are children who spend 5+ years fighting this cancer. There are children who have successful treatment, relapse within a few months and rapidly go down hill. There are children who have successful treatment, spend some time in remission and then relapse and go on to have various outcomes. This disease is tricky. It is aggressive. It is hard to predict. It is because we know all this, that I gave you such a long explanation about his prognosis.
What I can tell you is that the doctors are encouraged by Clayton's response to chemo, the pathology report and a particular characteristic of the tumor. They feel our long term prognosis is good. But they, like us, know that we still have a battle ahead. We have to stay on our toes.
The short and sweet version: Based on his response to chemo and the pathology findings, we're cautiously optimistic about is long term prognosis. :)
The plan from here is to start the sixth and FINAL round of chemo tomorrow, repeat all his scans and bone marrow tests in about a month and then start his first round of 3f8 on June 11. Given how good his pathology report was, it is even harder to imagine doing 3f8. But we know how necessary it is. In fact, our initial talk with the neuroblastoma doctor before surgery indicated that we should have been planning to do immunotherapy all along. The way it works, you have COG (Children's Oncology Group) which has 14.18 and then you have MSKCC which has 3f8. Both are forms of immunotherapy meant to do the same thing. While there is a lot of debate about the benefits, or lack there of, of doing a stem cell transplant, there is no debate about the importance of doing immunotherapy. The doctors here say that whether you do their immunotherapy or COG's that there is no question, that if your child has neuroblastoma then you should do immunotherapy as part of your initial treatment. Something that the doctors at USACW failed to mention to us. Not one single mention...ever.
That is where things are going forward.
More later...
P.S. Clayton no longer has anything hooked to him other then IV fluids running through his Hickman. Woot! Woot!
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