I spent Friday on the phone and online, gathering information, researching options, and trying to educate myself on information and terminology that is difficult to understand, at least without a medical degree. I'm still trying to process and make sense of things. It has been daunting, overwhelming, tiring, and consuming. It's almost 3 am, and I've been reading about different kinds of radiation, anti-angiogenic agents, etc. I feel like I'm back in college, only the stakes are a million times higher.
Our oncologist called Friday morning to let us know that she had spoken to St. Judes. At this time they won't consider Collin for their Phase II trial because he is not yet three years old, and because he has not yet had radiation. (And as a side note, after reviewing the original tumor pathology, it is her hunch that Collin's tumor does not have the hedgehog pathway anyway). It seems so far that the general opinion is that radiation has the most potential to cure this, but our oncologist is hoping to be able to combine some other treatment with the radiation to enable Collin to have a lower dose of radiation. If he were to have the highest dose of radiation that would have the best likelihood of curing the disease, chances are good that he would never be able to live independently because of the cognitive deficits he would be left with. So the trick is to figure out what dose, and what kind of radiation to do that would have the best chance of attacking the cancer without leaving him debilitated. At this point, our oncologist's recommendation is to have a consult at Memorial Sloan Kettering. If Collin would qualify for their trial, perhaps combining a lower dose of IMRT or Proton Beam radiation along with or after administering intrathecal radioimmunotherapy (the radioactive iodine that would be injected directly into the ventricle in the brain) would have the desired effect of killing the cancer without such cognitively debilitating side effects. So, I spoke with MSK and provided them some basic info, and they will contact us to arrange a consultation after the insurance is worked out. It is possible that we could be headed there by the end of next week for a consultation.
After my first phone discussion with our oncologist Friday morning, I posted the information from that phone call on one of the online groups of parents of children with Medulloblastoma. Two parents called me to share their experiences with different kinds of treatment. These discussions were immensely helpful to me. I learned more information about different treatment options, and came up with some important questions to ask during consultations. I also sent email to a few other doctors to see if they'd consult with us.
I am quickly learning that dealing with relapse is in many ways harder than going through this the first time. As Collin's oncologist told me yesterday afternoon, after the initial diagnosis last year, she did the agonizing over what treatment would be best for Collin, and presented us with a plan. But for relapse, there are no proven protocols to follow. We must research the different trials and treatment options out there, see which ones Collin qualifies for, and make a decision based on the information and opinions we're given. Different treatment options work well for some, and not well for others. Different tumors respond differently. There is no rhyme or reason to it. In the end, you roll the dice and hope to God that the choices you make are the ones that will cure your child.
Saturday, October 29, 2011
Thursday, October 27, 2011
Thursday, October 27, 2011 Recurrence, Options
Collin has a small nodule in his right lateral ventricle. It is new, and because of how it enhanced on the MRI, they know it is leptomeningeal recurrence. Basically a cancer cell was able to hide from all the chemo, and now that the chemo isn't there to keep the little bastard in check, it has started to grow.
The good news is that there are many treatment options that Collin hasn't had yet, and new treatments have been developed even since his original diagnosis last year. His oncologist feels this can still be curable. She went over a few different options with us today, and over the next week or so some additional testing and consultation will be done to determine which option will be the best one to try next.
Collin will have another spinal tap Tuesday to check his CSF for cancer cells. Despite the coating of cancer cells on his spine at the original diagnosis, he has never had cancer cells in his CSF, so his oncologist doesn't expect to find any now. But the presence of any cancer cells could disqualify him from some trials, so we must check again. In the meantime, slides and samples of the original tumor tissue will be shared with Memorial Sloan Kettering and St. Jude's to determine whether Collin will qualify for either of those hospitals' Phase II trials that would be appropriate.
At Memorial Sloan Kettering in NYC, there is a Phase II study of radio-immunotherapy given for recurrent medulloblastoma. If Collin's tumor has the presence of GD2, a certain protein not found on normal cells, there is an antibody that is attached to radioactive iodine. The radioactive iodine is then given directly into the spinal fluid, and it binds to the tumor cell and kills it. This brings the radiation therapy to the tumor cell without exposing normal tissues to radiation.
At St. Jude's there is Phase II study of the Hedgehog antagonist GDC-0449 in recurrent medulloblastoma. The hedgehog signaling pathway gives cells information that they need to develop. A subgroup of medulloblastoma patients have activation of the hedgehog pathway. If Collin's original tumor has this type of pathway, the current tumor would not be removed (to enable evaluation of effect), and a medication would be given orally for up to 2 years to disrupt the pathway.
Positive points to each of these therapies are that although Collin would need to be seen at one of these two hospitals at least initially, we would not need to stay at either place for extended periods of time. Some of the treatment can be done at home under the supervision of a more local hospital, like Hershey or CHOP. Collin wouldn't have to endure the nasty side effects of chemo such as vomiting and hair loss. There are also other chemo drugs that can be added to the treatment and given at home.
Some of the other questions we are left with looking at either of these options include whether insurance will cover treatment out of state (at least in the case of Sloan Kettering), and transportation. We can take a train to NYC, and there may be some organizations that can provide some assistance with travel expenses. In the case of St. Jude's, they evidently will provide their own transport there the first time, and then after that there may be some assistance from other organizations such as the Four Diamonds Fund, Angel Flight, etc. for the flights needed to get there and back.
Radiation is an option, but at this point it seems best to try other treatments first to give Collin the chance to get a little older so that the side effects wouldn't necessarily be so permanently devastating to his cognitive and physical development. If I understand correctly, getting him to the age of five before giving brain and spine radiation would be ideal.
So in the next week, we will wait for results of the spinal tap and tissue testing. Once we have more information, Collin will have a mediport reinserted, as well as any other ports/shunts/etc. needed for whatever option seems to be best for him. I'm asking for prayers that we will make the best decisions possible for his care, and that we will be able to cure this completely so that this beast cannot return. All children deserve to grow up and have happy, productive lives. Collin has been dealt an unfair hand, but he has proven to be strong and tough, and we will get through this one day at a time because that is our only option. I cannot thank you enough for the love and support that you have all shown us once again. It is so very humbling, and I don't know how I'll ever be able to repay it.
The good news is that there are many treatment options that Collin hasn't had yet, and new treatments have been developed even since his original diagnosis last year. His oncologist feels this can still be curable. She went over a few different options with us today, and over the next week or so some additional testing and consultation will be done to determine which option will be the best one to try next.
Collin will have another spinal tap Tuesday to check his CSF for cancer cells. Despite the coating of cancer cells on his spine at the original diagnosis, he has never had cancer cells in his CSF, so his oncologist doesn't expect to find any now. But the presence of any cancer cells could disqualify him from some trials, so we must check again. In the meantime, slides and samples of the original tumor tissue will be shared with Memorial Sloan Kettering and St. Jude's to determine whether Collin will qualify for either of those hospitals' Phase II trials that would be appropriate.
At Memorial Sloan Kettering in NYC, there is a Phase II study of radio-immunotherapy given for recurrent medulloblastoma. If Collin's tumor has the presence of GD2, a certain protein not found on normal cells, there is an antibody that is attached to radioactive iodine. The radioactive iodine is then given directly into the spinal fluid, and it binds to the tumor cell and kills it. This brings the radiation therapy to the tumor cell without exposing normal tissues to radiation.
At St. Jude's there is Phase II study of the Hedgehog antagonist GDC-0449 in recurrent medulloblastoma. The hedgehog signaling pathway gives cells information that they need to develop. A subgroup of medulloblastoma patients have activation of the hedgehog pathway. If Collin's original tumor has this type of pathway, the current tumor would not be removed (to enable evaluation of effect), and a medication would be given orally for up to 2 years to disrupt the pathway.
Positive points to each of these therapies are that although Collin would need to be seen at one of these two hospitals at least initially, we would not need to stay at either place for extended periods of time. Some of the treatment can be done at home under the supervision of a more local hospital, like Hershey or CHOP. Collin wouldn't have to endure the nasty side effects of chemo such as vomiting and hair loss. There are also other chemo drugs that can be added to the treatment and given at home.
Some of the other questions we are left with looking at either of these options include whether insurance will cover treatment out of state (at least in the case of Sloan Kettering), and transportation. We can take a train to NYC, and there may be some organizations that can provide some assistance with travel expenses. In the case of St. Jude's, they evidently will provide their own transport there the first time, and then after that there may be some assistance from other organizations such as the Four Diamonds Fund, Angel Flight, etc. for the flights needed to get there and back.
Radiation is an option, but at this point it seems best to try other treatments first to give Collin the chance to get a little older so that the side effects wouldn't necessarily be so permanently devastating to his cognitive and physical development. If I understand correctly, getting him to the age of five before giving brain and spine radiation would be ideal.
So in the next week, we will wait for results of the spinal tap and tissue testing. Once we have more information, Collin will have a mediport reinserted, as well as any other ports/shunts/etc. needed for whatever option seems to be best for him. I'm asking for prayers that we will make the best decisions possible for his care, and that we will be able to cure this completely so that this beast cannot return. All children deserve to grow up and have happy, productive lives. Collin has been dealt an unfair hand, but he has proven to be strong and tough, and we will get through this one day at a time because that is our only option. I cannot thank you enough for the love and support that you have all shown us once again. It is so very humbling, and I don't know how I'll ever be able to repay it.
Wednesday, October 26, 2011
I should be asleep. Heaven knows I'm so exhausted I could sleep for days. But I can't get past the shock. I can hardly breathe let alone think or function well. I actually wasn't overly anxious this morning. I finally let myself think rationally: Collin is doing great! He looks good! He's making such great progress! I see it every day, and that's what everyone says when they see him. So how can this be? How can it be that I feel like we're right back at the beginning again, after all we've been through? Didn't that count for anything?
Unfortunately I know more than I did the first time around. I know what it's like to watch your kid puke his guts out and need a feeding tube or TPN to keep him from losing too much weight. To watch his beautiful soft hair and long eyelashes fall out because of the poison being pumped through his veins. To watch him endure high fevers because his immune system is shot. To be forced apart from my other child and my husband so that I can stay by my baby's side. To watch him fight to regain what this damned disease takes away. To live with the constant fear I was starting to let go of.
I have a million questions in my head tonight. What is this nodule? Will he need more surgery? More chemo? Radiation now that he's almost 3? What horrible side effects will he have to live with? How much more damage will his little body be forced to endure? Will we need to go to a different hospital, possibly in a different state, to get whatever treatment he will need? How will the four of us handle long periods of separation if we do have to travel for care? What will the cost be financially? What about all the things we were looking forward to: me finally finishing getting the house back to normal, our visit to Altoona, the THON Family Carnival, the fundraiser in November, Thanksgiving, Collin's 3rd birthday, Neya's 2nd grade Christmas concert at the state capitol building, Christmas, THON, Neya's First Holy Communion, her dance recital next June? Along with my peace of mind and my sanity, how much more will cancer take from us? And how will we survive it?
Unfortunately I know more than I did the first time around. I know what it's like to watch your kid puke his guts out and need a feeding tube or TPN to keep him from losing too much weight. To watch his beautiful soft hair and long eyelashes fall out because of the poison being pumped through his veins. To watch him endure high fevers because his immune system is shot. To be forced apart from my other child and my husband so that I can stay by my baby's side. To watch him fight to regain what this damned disease takes away. To live with the constant fear I was starting to let go of.
I have a million questions in my head tonight. What is this nodule? Will he need more surgery? More chemo? Radiation now that he's almost 3? What horrible side effects will he have to live with? How much more damage will his little body be forced to endure? Will we need to go to a different hospital, possibly in a different state, to get whatever treatment he will need? How will the four of us handle long periods of separation if we do have to travel for care? What will the cost be financially? What about all the things we were looking forward to: me finally finishing getting the house back to normal, our visit to Altoona, the THON Family Carnival, the fundraiser in November, Thanksgiving, Collin's 3rd birthday, Neya's 2nd grade Christmas concert at the state capitol building, Christmas, THON, Neya's First Holy Communion, her dance recital next June? Along with my peace of mind and my sanity, how much more will cancer take from us? And how will we survive it?
Wednesday, October 26, 2011
Collin had his MRI this morning. His oncologist called while I was picking Neya up from school, and spoke to Bill. As soon as I got home he had me call her back. The MRI showed a small nodule in one of his ventricles. His spine is clear. Bill and I will be meeting with her tomorrow at 10:00 am. Please pray for us! I am terrified!
Tuesday, October 25, 2011
Tuesday, October 25, 2011
As usual, I can't believe how much time has gone by since my last update! I've certainly been keeping busy. Unfortunately our basement flooded on September 7 due to the obscene amount of rain we got from tropical storm Lee, and our house has been in disarray ever since. Because of Collin, we absolutely couldn't chance having any mold grow, so we called a restoration company to come in and dry out the basement. They tore out the baseboard trim and carpeting, and had industrial strength fans and dehumidifiers running for four days. Thankfully the insulation and drywall dried completely, and didn't have to be removed. We moved the toys up out of the playroom when we realized our two sump pumps weren't keeping up with the water and flooding was inevitable, and everything else that was stored in the basement was in Rubbermaid storage bins, so we didn't lose any belonging. But everything had to be moved upstairs, so we had piles and piles of bins in the living room and garage. I decided it was time to go through every single bin before it could be moved back down to storage, and get rid of what we don't need anymore. So over the past few weeks, in between Collin's therapy appointments and other family activities, I have been working on going through everything and deciding what can be thrown away, donated, or re-packed and re-stored. This has of course led to me cleaning out and reorganizing other areas of the house too. It is not a job I had time for, but I decided it was life's way of pushing me to do a job that I wouldn't have done for another 5-10 years. In the past, I found myself too emotionally attached to things to let them go, but I have a different perspective after the last year and a half. It feels really good to simplify. The only part that I had trouble with was going through all of Collin's baby things. When I was sorting through his outgrown clothing, his babyhood felt farther away than Neya's, and I found myself sobbing as I went through his clothing. Every so often things just catch me off guard. I think most of the time I just plow through each day and keep my emotions under wraps because I know they could easily get the best of me. This probably isn't the healthiest way to handle things, and maybe it'll land me in counseling someday, but right now I just do what I have to to get through the day. Anyway, I am happy to say that I finally can see an end to the huge undertaking of getting the basement and the rest of the house back to normal. Last Tuesday the baseboard trim was replaced, Friday it was painted, and last weekend a Salvation Army truck came to collect the many things we donated. Today the carpeting is being replaced and we can start putting the playroom back together. I am so excited for it all to be done; I feel like our house will be more organized than it has been since we moved in almost eight years ago.
On September 23, Collin and I were on our way home from speech therapy when my phone rang. It was Caiden's mom Sam saying they were in the area and asking if they could stop by to see us. I was SO excited to see them outside the hospital! Caiden is doing very well, and it was nice to see him and Collin play like little boys should.
Some of our friends from the Guardian Knights Law Enforcement Motorcycle Club came to visit Collin in August, and gave us tickets to take Collin for a Day Out With Thomas. So on Saturday September 24th, we took Collin to the Strasburg Railroad to ride on Thomas the Train. He had a great time, and cried when it was time to get off the train.
On Sunday September 25, Bill, Neya, Collin and I walked in the Four Diamonds Fund 5K. Team Collin raised $711 for the Four Diamonds Fund. Some of the wonderful doctors, nurses, social workers, and child life specialists who mean so much to us were there as well. It was a beautiful day, and we had a lot of fun. I hope to take part in the event again next year. Thank you to everyone who made a donation!
Collin's physical therapist has been monitoring Collin's feet for the past few months. She has determined that he has planovalgus, which means his feet are flat, and they pronate (lean inward). It is not uncommon for children Collin's age, but since it isn't improving, she recommended that he wear orthotics in his shoes to give his arches more support. He was measured for the orthotics on October 5, and they should be ready any day now. It will be interesting to see whether the increased support helps his balance when he walks.
Last Friday, October 14, Collin's mediport was removed from his chest. Collin wasn't allowed to eat anything after midnight the night before, and we had to be at the hospital at 8:15 in the morning. Collin was cheerful and easy going for quite a while, but unfortunately we waited for almost three and a half hours before they were ready for him in the OR. By the time the anesthesiologist came to have me sign the consent form, Collin was bright red, sweaty, and screaming "Go home, go home!" He was hungry and so tired of waiting. Thankfully he calmed down as I carried him to the OR. I stayed with him until he was asleep, and then grabbed a quick lunch. I had barely finished eating when they called to say the surgery was done and I could go to the PACU to be with him when he woke up. It didn't take him too long to wake up, and thankfully he woke up calmly. Before long he was sitting up, looking around, and asking for his books. In recovery, the nurse brought him some graham crackers and apple juice, which he happily ate. He talked and played, and even put his arm around my back and patted my shoulder at one point, like he comforting me. He watched the nurse take the IV out of his foot without making a peep, and was ready to go. We got home around 3:30, and Collin seemed to feel fine. So fine in fact that he didn't want to let go of a Penn State garden gnome I had bought to put out in the front of the house; he wanted to play with it instead!
The first weekend of October was the first canning weekend for Penn State's Dance Marathon. We had the opportunity to visit some of the students who mean so much to us while they were canning, and despite the cold, drizzly weather, we had fun. Then on October 15, two of the girls from our Altoona THON family came down to meet us. We had a great time with them, and we are very excited to visit the Penn State Altoona campus in November. The students who are so dedicated to THON are nothing short of amazing, and we are blessed to have them beside us through this journey. They are making a huge difference to so many, and the world is a better place with them in it. <3
Thanks to one of the wonderful ladies that work where Collin goes for therapy, we are having a fundraiser on November 11 in Collin's honor. All proceeds will go to the Four Diamonds Fund. It will be a lot of fun, and we are very excited! If anyone local needs information or would like to purchase tickets, please let me know.
Tomorrow is Collin's next MRI. He finished his maintenance chemo in August, so this will be his first scan since being completely of chemo. Please send up prayers and positive thoughts that it will continue to show NED. We have to be at the hospital at 7:45 am. Our doctors are really good about not making us wait too long for results, so I am hoping to have at least preliminary results by tomorrow night. As soon as I know, I will share an update!
On September 23, Collin and I were on our way home from speech therapy when my phone rang. It was Caiden's mom Sam saying they were in the area and asking if they could stop by to see us. I was SO excited to see them outside the hospital! Caiden is doing very well, and it was nice to see him and Collin play like little boys should.
Some of our friends from the Guardian Knights Law Enforcement Motorcycle Club came to visit Collin in August, and gave us tickets to take Collin for a Day Out With Thomas. So on Saturday September 24th, we took Collin to the Strasburg Railroad to ride on Thomas the Train. He had a great time, and cried when it was time to get off the train.
On Sunday September 25, Bill, Neya, Collin and I walked in the Four Diamonds Fund 5K. Team Collin raised $711 for the Four Diamonds Fund. Some of the wonderful doctors, nurses, social workers, and child life specialists who mean so much to us were there as well. It was a beautiful day, and we had a lot of fun. I hope to take part in the event again next year. Thank you to everyone who made a donation!
Collin's physical therapist has been monitoring Collin's feet for the past few months. She has determined that he has planovalgus, which means his feet are flat, and they pronate (lean inward). It is not uncommon for children Collin's age, but since it isn't improving, she recommended that he wear orthotics in his shoes to give his arches more support. He was measured for the orthotics on October 5, and they should be ready any day now. It will be interesting to see whether the increased support helps his balance when he walks.
Last Friday, October 14, Collin's mediport was removed from his chest. Collin wasn't allowed to eat anything after midnight the night before, and we had to be at the hospital at 8:15 in the morning. Collin was cheerful and easy going for quite a while, but unfortunately we waited for almost three and a half hours before they were ready for him in the OR. By the time the anesthesiologist came to have me sign the consent form, Collin was bright red, sweaty, and screaming "Go home, go home!" He was hungry and so tired of waiting. Thankfully he calmed down as I carried him to the OR. I stayed with him until he was asleep, and then grabbed a quick lunch. I had barely finished eating when they called to say the surgery was done and I could go to the PACU to be with him when he woke up. It didn't take him too long to wake up, and thankfully he woke up calmly. Before long he was sitting up, looking around, and asking for his books. In recovery, the nurse brought him some graham crackers and apple juice, which he happily ate. He talked and played, and even put his arm around my back and patted my shoulder at one point, like he comforting me. He watched the nurse take the IV out of his foot without making a peep, and was ready to go. We got home around 3:30, and Collin seemed to feel fine. So fine in fact that he didn't want to let go of a Penn State garden gnome I had bought to put out in the front of the house; he wanted to play with it instead!
The first weekend of October was the first canning weekend for Penn State's Dance Marathon. We had the opportunity to visit some of the students who mean so much to us while they were canning, and despite the cold, drizzly weather, we had fun. Then on October 15, two of the girls from our Altoona THON family came down to meet us. We had a great time with them, and we are very excited to visit the Penn State Altoona campus in November. The students who are so dedicated to THON are nothing short of amazing, and we are blessed to have them beside us through this journey. They are making a huge difference to so many, and the world is a better place with them in it. <3
Thanks to one of the wonderful ladies that work where Collin goes for therapy, we are having a fundraiser on November 11 in Collin's honor. All proceeds will go to the Four Diamonds Fund. It will be a lot of fun, and we are very excited! If anyone local needs information or would like to purchase tickets, please let me know.
Tomorrow is Collin's next MRI. He finished his maintenance chemo in August, so this will be his first scan since being completely of chemo. Please send up prayers and positive thoughts that it will continue to show NED. We have to be at the hospital at 7:45 am. Our doctors are really good about not making us wait too long for results, so I am hoping to have at least preliminary results by tomorrow night. As soon as I know, I will share an update!
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