Posts
This post has absolutely nothing to do with updates on Keegan's health although his Oncologist is back from vacation today and I heard from him first thing this morning which made me feel GREAT!!!
Thing 1: Our online auction hosted by Crystal over at Biehl Adventures put together an online auction running from June 1st- June 8th online at This facebook page . There are TONS of different options Not just baby and not just womanly stuff!! I am pretty excited about it!
Thing 2: I have another order of T-shirts placed. If you have not had the chance to get one of the coolest T-shirts on the planet now would be your chance. Just message me the sizes you want shirts are $15 a piece and I will give you the paypal address or our mailing address to send the funds. This will reserve your shirt and I will mail as soon as they are done in production.
So that is all I have for right now, be sure to check out that auction and let me know if you need a shirt!
Love!
Tuesday, May 31, 2011
Saturday, May 28, 2011
Since the last post.....
Since I reported last Keegan has now started army crawling again which I believe is a good thing in light of the SPINAL surgery he just had a week and a half ago!! I think at this point he has just been through so much he bounces back that much quicker! He is a tough little fighter and I pray to the dear lord that he keeps on fighting the good fight.
On another note, I got quite frustrated with MSKCC and the lack of communication between them and Riley last week. I figured by now I would at least have an appointment and flight booked but still w.a.i.t.i.n.g and like a fellow medullo mom wrote me in an email the other day " But just say you are a crazy neurotic
cancer momma... (well all of us who are going through this are crazy and neurotic so it goes without saying).. and you want to know what you can do on your end to try and make this transition between institutions. This is an urgent matter..."
Well it doesn't help that Dr. Shih is out on vacay (which they should not be able to do by the way -just kidding!!!) But Jayne has kept in contact with me daily via email or calls and updates me on the status as to what is going on. As of the end of last week, Dr. Pradhan had talked with the docs at MSK and started to get things in order. Jayne started working on all the paperwork they would need on Kee as well as requesting the slides from pathology of both of his tumors, which I guess tend to take a little time. Jayne told me that Dr. K told Dr. Pradhan (you still with me here?) that she will try to call my this week to give me a heads up about NYC, so I am waiting very impatiently for that call. (My phone is with me EVERYWHERE I go so I don't miss that call!)
Tuesday Jayne is sending out all the paperwork overnight to NYC from Riley, Dr. Shih will be back on Wednesday and hopefully by the end of this coming week pathology will have our slides together and on the way to NYC.
Whew.....are you overwhelmed because good lord that is alot......We are doing okay for those of you wondering. Ry and I have talks at night where the darkness is my friend as I silently let tears fall for the what ifs. This is scary and emotional, I won't like. I read some research on a reputable website that once medullo recurred it is usually deadly, I pray that is not our case, Keegan has not even had a chance to really live his life at all!!!
With that said, he did have his first to Wal-Mart the other day. I diligently wiped down his cart with antibacterial stuff and put him in the buggy, he was happy as a lark! We traveled around the store collecting our groceries and other items and every time he saw people he just started to giggle-it was great-I have never seen a kid more excited about being out in public, it really made me feel like a normal momma for once.
So that is our updated, I would like to express my deepest sympathy and condolences to the families of Addison Jo who passed away from complications of neuroblastoma on May 27 at Kosair Hospital and to the Family of Katie Lynch a Junior at Roncalli in Indy who passed away from complications involving a stem cell transplant for her leukemia. Please include both families in your prayers this evening as they are facing the most terrible loss of all.
On my last NOTE: Crystal Biehl is still collecting sponsors/items for the online auction that will start June 1st for our benefit. If you are a consultant for any company (scentsy, thirty-one, tupperware, pampered chef, avon, Mary K, etc) or if you happen to be crafty and make things or have an etsy shop I am sure she would love to include you if you are willing to donate!
Thanks & Much Love!
On another note, I got quite frustrated with MSKCC and the lack of communication between them and Riley last week. I figured by now I would at least have an appointment and flight booked but still w.a.i.t.i.n.g and like a fellow medullo mom wrote me in an email the other day " But just say you are a crazy neurotic
cancer momma... (well all of us who are going through this are crazy and neurotic so it goes without saying).. and you want to know what you can do on your end to try and make this transition between institutions. This is an urgent matter..."
Well it doesn't help that Dr. Shih is out on vacay (which they should not be able to do by the way -just kidding!!!) But Jayne has kept in contact with me daily via email or calls and updates me on the status as to what is going on. As of the end of last week, Dr. Pradhan had talked with the docs at MSK and started to get things in order. Jayne started working on all the paperwork they would need on Kee as well as requesting the slides from pathology of both of his tumors, which I guess tend to take a little time. Jayne told me that Dr. K told Dr. Pradhan (you still with me here?) that she will try to call my this week to give me a heads up about NYC, so I am waiting very impatiently for that call. (My phone is with me EVERYWHERE I go so I don't miss that call!)
Tuesday Jayne is sending out all the paperwork overnight to NYC from Riley, Dr. Shih will be back on Wednesday and hopefully by the end of this coming week pathology will have our slides together and on the way to NYC.
Whew.....are you overwhelmed because good lord that is alot......We are doing okay for those of you wondering. Ry and I have talks at night where the darkness is my friend as I silently let tears fall for the what ifs. This is scary and emotional, I won't like. I read some research on a reputable website that once medullo recurred it is usually deadly, I pray that is not our case, Keegan has not even had a chance to really live his life at all!!!
With that said, he did have his first to Wal-Mart the other day. I diligently wiped down his cart with antibacterial stuff and put him in the buggy, he was happy as a lark! We traveled around the store collecting our groceries and other items and every time he saw people he just started to giggle-it was great-I have never seen a kid more excited about being out in public, it really made me feel like a normal momma for once.
So that is our updated, I would like to express my deepest sympathy and condolences to the families of Addison Jo who passed away from complications of neuroblastoma on May 27 at Kosair Hospital and to the Family of Katie Lynch a Junior at Roncalli in Indy who passed away from complications involving a stem cell transplant for her leukemia. Please include both families in your prayers this evening as they are facing the most terrible loss of all.
On my last NOTE: Crystal Biehl is still collecting sponsors/items for the online auction that will start June 1st for our benefit. If you are a consultant for any company (scentsy, thirty-one, tupperware, pampered chef, avon, Mary K, etc) or if you happen to be crafty and make things or have an etsy shop I am sure she would love to include you if you are willing to donate!
Thanks & Much Love!
Wednesday, May 25, 2011
The Buzz on Full Brain & Spine Radiation
Tuesday May 24th we went to see Dr. Douglas at the Proton Beam Institute in Bloomington Indiana. We knew going in that this would be a dismal appointment but felt this was a much needed step in our attempt to gain as much knowledge about our options as possible.
The clinic itself is wonderful. Its new, up to date, and generally you get a "homey" feeling. I even talked with a mom in the playroom whose little one was just diagnosed 4 weeks ago and just started focal radiation. They too see Dr. Shih and we were just chatting about cancer and Riley in general.
We got into our exam room and sat down with a doctor and a Resident. We discussed Keegan's past medical issues and current issues. We discussed things he is able and unable to do at this time and a general "look over" as to his current health concerns. They left, went out and looked at all Keegan's MRI's and scans and brought Dr. Douglas back to the room about 10 minutes later.
Dr. Douglas is a previous pediatrician, a previous Pediatric oncologist and now a pediatric radiologist. He seems to be a very brilliant man with lots of insight into medulloblastoma (he has been working with Pediatric cancer for 30 years).
Right off the top he warned us that doing full brain and spine radiation right now at this point in time will lower his IQ 30 points. That is ALOT and quite frankly, I was flabbergasted, but nonetheless we kept conversing. He said the longer we can wait on this full brain and spine radiation the better, just by getting him to 3 years old the difference in IQ effect is tremendous. Instead of 30 points it would only drop 20-25 pts. While that is still more than we would like, this is our best bet at beating this disease. Which I believe is still only 50/50.
So let me explain this IQ drop a little more. So what they are telling us is that he will be able to do what he can currently do at the time of the radiation. What will be a problem, will be gaining future knowledge, functioning, and life skills. So if we can get him to a walk, talking "average" toddler state before we have to radiate, he has a better chance at a more "normal" life.
This is the most severe side effect of this type of radiation, and the biggest factor as to what we decided to do. The doctor assures us that he won't loose his personality and when asked about his quality of life he couldn't really say because that is all Keegan would really know. He wouldn't remember the "before radiation" days. I don't know how I feel about this, yea its good he will not remember how he "used" to be, but not being able to really determine what kind of quality his life would be for however long is real tough.
Some other side effects of Proton Beam Radiation are inability for the spine to grow correctly thus having a shorter torso. I don't think its anything major per sei but I think its enough they need to tell you it can happen. Since we would be giving a large dose of radiation to the brain and primarily the original site of the tumor he would most likely need growth hormones for the rest of his life because the pituitary glad would be damaged due to the radiation.
Cataracts are another side effect to worry about although Dr. Douglas said children's lens transplants are done pretty routinely and are quite easy, as to make us feel better about childhood cataracts. Last but not least and I am sure there are many more side effects I am missing but secondary malignancies are always a possibility and that is about 2%-4%.
Dr. Douglas, like ourselves, is banking on Sloan Kettering to help buy some time. He kind of agreed with us on our plan of action so far and thinks radiation should be our last route. The regimen he would need is 6 weeks of chemo 5 days a week. Not a really easy small regimen.
We feel more comfortable knowing these facts now and what will happen if and when this road is chosen. Like mentioned in the last paragraph we are trying everything else first but if and when it comes to this I think we both feel more comfortable knowing he won't loose ground with skills, they will just be tougher to maintain.
The best thing we can do for ourselves at this point in time is to educate ourselves as much as possible before making any major decision and we are praying for guidance and peace in whatever decisions we choose.
The clinic itself is wonderful. Its new, up to date, and generally you get a "homey" feeling. I even talked with a mom in the playroom whose little one was just diagnosed 4 weeks ago and just started focal radiation. They too see Dr. Shih and we were just chatting about cancer and Riley in general.
We got into our exam room and sat down with a doctor and a Resident. We discussed Keegan's past medical issues and current issues. We discussed things he is able and unable to do at this time and a general "look over" as to his current health concerns. They left, went out and looked at all Keegan's MRI's and scans and brought Dr. Douglas back to the room about 10 minutes later.
Dr. Douglas is a previous pediatrician, a previous Pediatric oncologist and now a pediatric radiologist. He seems to be a very brilliant man with lots of insight into medulloblastoma (he has been working with Pediatric cancer for 30 years).
Right off the top he warned us that doing full brain and spine radiation right now at this point in time will lower his IQ 30 points. That is ALOT and quite frankly, I was flabbergasted, but nonetheless we kept conversing. He said the longer we can wait on this full brain and spine radiation the better, just by getting him to 3 years old the difference in IQ effect is tremendous. Instead of 30 points it would only drop 20-25 pts. While that is still more than we would like, this is our best bet at beating this disease. Which I believe is still only 50/50.
So let me explain this IQ drop a little more. So what they are telling us is that he will be able to do what he can currently do at the time of the radiation. What will be a problem, will be gaining future knowledge, functioning, and life skills. So if we can get him to a walk, talking "average" toddler state before we have to radiate, he has a better chance at a more "normal" life.
This is the most severe side effect of this type of radiation, and the biggest factor as to what we decided to do. The doctor assures us that he won't loose his personality and when asked about his quality of life he couldn't really say because that is all Keegan would really know. He wouldn't remember the "before radiation" days. I don't know how I feel about this, yea its good he will not remember how he "used" to be, but not being able to really determine what kind of quality his life would be for however long is real tough.
Some other side effects of Proton Beam Radiation are inability for the spine to grow correctly thus having a shorter torso. I don't think its anything major per sei but I think its enough they need to tell you it can happen. Since we would be giving a large dose of radiation to the brain and primarily the original site of the tumor he would most likely need growth hormones for the rest of his life because the pituitary glad would be damaged due to the radiation.
Cataracts are another side effect to worry about although Dr. Douglas said children's lens transplants are done pretty routinely and are quite easy, as to make us feel better about childhood cataracts. Last but not least and I am sure there are many more side effects I am missing but secondary malignancies are always a possibility and that is about 2%-4%.
Dr. Douglas, like ourselves, is banking on Sloan Kettering to help buy some time. He kind of agreed with us on our plan of action so far and thinks radiation should be our last route. The regimen he would need is 6 weeks of chemo 5 days a week. Not a really easy small regimen.
We feel more comfortable knowing these facts now and what will happen if and when this road is chosen. Like mentioned in the last paragraph we are trying everything else first but if and when it comes to this I think we both feel more comfortable knowing he won't loose ground with skills, they will just be tougher to maintain.
The best thing we can do for ourselves at this point in time is to educate ourselves as much as possible before making any major decision and we are praying for guidance and peace in whatever decisions we choose.
Monday, May 23, 2011
Hey Friends!!!
I know lots of people are out there praying for us and I appreciate it beyond words! Ryan and I are traveling with Keegan tonight to Bloomington to check out the Proton Beam Clinic once again but this time talk with the Pediatric Radiologist about full brain and spinal radiation. Implications, procedures and such. I am NOT looking forward to this but it needs to be done. I am still patiently {{actually not so patiently}} waiting on a call from either our oncologist or Sloan Kettering about getting up to NYC to be evaluated for their study, its so frustrating waiting on other people.
So that is the brief update on the medical front. A friend of mine Crystal over at Biehl Adventures is getting an online auction together over at facebook and the the address is Karing for Keegan Fundraiser . The Fundraiser wont actually start until June 1st and will run through the 8th. If you sell a product that you would like to donate, make a product you would like to donate, or even donate a Gift card or something to put up for auction we would greatly appreciate it. You can either email her at karingforkeegan@hotmail.com or fill out this form http://bit.ly/ioEIgt .
This fundraiser is to help with transportation costs to all these clinics and places we are going to help save our child's life. As many of you know I lost my job a year ago when he was diagnosed and are living on one income. Plane tickets to and from NYC aren't cheap and we aren't even sure it will be covered by insurance as of yet, but I want to save my child's life like I am sure most of you would. So would you consider helping? Please?
So that is the brief update on the medical front. A friend of mine Crystal over at Biehl Adventures is getting an online auction together over at facebook and the the address is Karing for Keegan Fundraiser . The Fundraiser wont actually start until June 1st and will run through the 8th. If you sell a product that you would like to donate, make a product you would like to donate, or even donate a Gift card or something to put up for auction we would greatly appreciate it. You can either email her at karingforkeegan@hotmail.com or fill out this form http://bit.ly/ioEIgt .
This fundraiser is to help with transportation costs to all these clinics and places we are going to help save our child's life. As many of you know I lost my job a year ago when he was diagnosed and are living on one income. Plane tickets to and from NYC aren't cheap and we aren't even sure it will be covered by insurance as of yet, but I want to save my child's life like I am sure most of you would. So would you consider helping? Please?
Thursday, May 19, 2011
Ethics, Morals and all that Stuff.....
As some of you may or may not know by now, the pathology that came back on the growth that was removed from Keegan's spine on Monday is Medulloblastoma (the same cancer removed from his brain a year ago). They also took a sample of Keegan's spinal fluid while they where in the spinal column, results came back yesterday that there are free roaming cancer cells in his spinal fluid. To say the least we feel defeated. We feel that God has let us down and don't really know where to turn next. God is the great and sovereign healer so why hasn't he healed MY baby? I just don't understand, and with all the people prayer across the country and even the world, why does this have to be him; us.
We do have decision that are going to be made. Even though I personally feel let down by God I am looking to him for strength and wisdom to help make these decisions that NO, I repeat NO parent should ever have to make. Even my worst enemy. Without going into too much detail I will sort of outline the decision we are presented with at this time.
We do have decision that are going to be made. Even though I personally feel let down by God I am looking to him for strength and wisdom to help make these decisions that NO, I repeat NO parent should ever have to make. Even my worst enemy. Without going into too much detail I will sort of outline the decision we are presented with at this time.
- Full brain and spinal radiation-while this is the only option to help fully irradiate any and all tumor cells floating in the spinal fluid, thus sterilizing it, it will severely effect his IQ and drop it many many points. Is this ethical or moral, I am still trying to figure that out. Do I take a child how is already special needs and compound that by 100x's with full brain and spine radiation to try to save his life? I don't really know, we are at a loss here.
- Another option is Messocentric Chemotherapy. This is a combination of chemo drugs given orally and in the comfort of our own home that work at destroying cancer cells by cutting off the blood supply to these nasty little things. Supposedly side effects are minimal but this by no means is a cure.
- Third option, is 3F8 at Memorial Sloan Kettering Cancer Center in NYC . Dr. Kim Kramer is working with another doctor on this radioimmunotherapy. As quoted from her page:
"In my research, I am investigating novel treatments to eliminate microscopic tumor cells in the central nervous system. These novel treatments include monoclonal antibodies attached to radioactive substances (radioimmunotherapy) that are administered directly into the cerebrospinal fluid. We remain one of the few programs in the world committed to the cure of cancers of the leptomeninges. "
While this sounds risky I am feeling in my heart it is the first and maybe the best way to restart this fight. It will probably take some money but if anyone has any novel ideas for fundraisers I would be down.
I am asking for prayers for guidance and peace for Ry and myself along with our doctors and nurses and we come to decisions that no parent should ever have to make.
Thanks for listening, if you have anything to contribute I ask you to please leave a comment, if you have nothing nice to say though; like momma says don't say anything at all, this is a very trying time for our family and we don't need negative or unproductive words from the peanut gallery.
Thanks so much and with much love!!!!
Saturday, May 14, 2011
A Year in a Life
A Year in a Life from Keegansmommy09 on Vimeo.
The video speaks for itself. Please Please Please pray with every ounce of your being that the new finding in Keegan's spine is just an odditity. Everyone who has ever met Keegan has fallen in love. He is our son and we are with him in this fight. Lets storm the gates of heaven with prayer that the cancer is gone and the finding is benign!
With Love!
The video speaks for itself. Please Please Please pray with every ounce of your being that the new finding in Keegan's spine is just an odditity. Everyone who has ever met Keegan has fallen in love. He is our son and we are with him in this fight. Lets storm the gates of heaven with prayer that the cancer is gone and the finding is benign!
With Love!
Friday, May 13, 2011
These are the kinda posts I hate....
We had our 1 year follow up MRI yesterday. I went in feeling strong and empowered with all the prayers out there for us. Our day was going okay until the nurse came in. If you are new to our story please go back to May & July last year, it will catch you up a little. So nurse J came in to check on Keegan. She examined him and then proceeded to tell us partial results from the MRI. His brain looks stable, good even (which made me very happy of coarse) the spots at the top of his spine and the sugar coating that was previously there is no longer (this is great!) I was about to be on cloud 9 when she threw in a doosie.
Keegan has an odd looking growth (that is what they are calling it right now) in the lumbar part of his spine. They are unsure of what it is, but they know for a fact it was not there 3 months ago. We got to talking about this spot and Dr. Shin pulled up the scans on the computer in our room. This "growth" is in the spinal column putting pressure on his spine and the sheath that surrounds and hold the spinal fluid. Dr. Shih says its not a cyst (doesn't look fluid filled) but it doesn't light up like his other cancer did either so they really have NO ideas.
The best remedy, get in there and get it out as soon as possible. His neurosurgeon Dr. Ackerman thinks this will be fairly easy and can do it with no problems. So she scheduled his surgery early Monday morning.
So we got this news. Didn't really know how to react just knew I wanted to get the heck outta dodge and get home and be with my entire family. So we loaded up, went to the hotel and got our stuff and headed out of town. We got as far as HALF WAY HOME when I got a call on my cell. I answer, its Dr. Shih he then puts Dr. Ackerman on the phone and she tells me that we are needed to be back in Indy as soon as we can get there. She needs to evaluate him before she can operate Monday. I bust a U on highway 41 and head back to Indy (an hour and a half out now). We get there and head up to the Oncology/Hematology clinic where they page Dr. Ackerman.
Dr. Ackerman shows up in clinic, by now its 5:30 pm and everyone is gone. She looks him over and goes on to tell us what she thinks this might be or what it couldn't be. She said and I quote "He is cute but I don't trust him especially what happened a year ago today." Anyway so she checked him out, told us what to watch for this weekend as far as physical condition but other than that we would see her Monday morning. They graciously gave us a gas card to get back home since they made us turn around and we headed home.
Honestly I am rather numb. I believe in my heart of hearts that this is NOT cancer. I didn't get the "oh crap" feeling when they were talking to us and I hold strong to my faith that this is just something random. I look at him and clinically he looks great. I am saddened that there was anything at all on the scan but very hopeful that this will all be nothing.
His surgery is scheduled for first on on Monday morning. We have to be there at 5:45 am and Dr. Ackerman said to expect to be in hospital for 4-5 days. So Sunday we pack, for another stay at Riley. We will be in the new tower so we are told and it's supposed to be NICE, not that this is any consolation for a sick child. Keegan has to lay completely flat for 24 hours and then he has to take it easy for a week.
Please find our page on facebook: Karing for Keegan on Facebook. I have set up an event to wear green and pray on Monday. It would mean the world to my family if you were behind us praying and petitioning the gates of heaven to make sure this is NOT recurrent disease!
If you would like to share this on your personal blog please feel free or would like to add our family (specifically Keegan) to any and all prayer lists I am okay with that. Please feel free to head to our facebook page and participate. If you questions or need to get ahold of me I am at chupp {dot} beth {at}gmail {dot} com.
Thanks for all the prayers and support and hear is to hoping this is an easy successful surgery and what they removed is nothing at all!
With Love,
Keegan has an odd looking growth (that is what they are calling it right now) in the lumbar part of his spine. They are unsure of what it is, but they know for a fact it was not there 3 months ago. We got to talking about this spot and Dr. Shin pulled up the scans on the computer in our room. This "growth" is in the spinal column putting pressure on his spine and the sheath that surrounds and hold the spinal fluid. Dr. Shih says its not a cyst (doesn't look fluid filled) but it doesn't light up like his other cancer did either so they really have NO ideas.
The best remedy, get in there and get it out as soon as possible. His neurosurgeon Dr. Ackerman thinks this will be fairly easy and can do it with no problems. So she scheduled his surgery early Monday morning.
So we got this news. Didn't really know how to react just knew I wanted to get the heck outta dodge and get home and be with my entire family. So we loaded up, went to the hotel and got our stuff and headed out of town. We got as far as HALF WAY HOME when I got a call on my cell. I answer, its Dr. Shih he then puts Dr. Ackerman on the phone and she tells me that we are needed to be back in Indy as soon as we can get there. She needs to evaluate him before she can operate Monday. I bust a U on highway 41 and head back to Indy (an hour and a half out now). We get there and head up to the Oncology/Hematology clinic where they page Dr. Ackerman.
Dr. Ackerman shows up in clinic, by now its 5:30 pm and everyone is gone. She looks him over and goes on to tell us what she thinks this might be or what it couldn't be. She said and I quote "He is cute but I don't trust him especially what happened a year ago today." Anyway so she checked him out, told us what to watch for this weekend as far as physical condition but other than that we would see her Monday morning. They graciously gave us a gas card to get back home since they made us turn around and we headed home.
Honestly I am rather numb. I believe in my heart of hearts that this is NOT cancer. I didn't get the "oh crap" feeling when they were talking to us and I hold strong to my faith that this is just something random. I look at him and clinically he looks great. I am saddened that there was anything at all on the scan but very hopeful that this will all be nothing.
His surgery is scheduled for first on on Monday morning. We have to be there at 5:45 am and Dr. Ackerman said to expect to be in hospital for 4-5 days. So Sunday we pack, for another stay at Riley. We will be in the new tower so we are told and it's supposed to be NICE, not that this is any consolation for a sick child. Keegan has to lay completely flat for 24 hours and then he has to take it easy for a week.
Please find our page on facebook: Karing for Keegan on Facebook. I have set up an event to wear green and pray on Monday. It would mean the world to my family if you were behind us praying and petitioning the gates of heaven to make sure this is NOT recurrent disease!
If you would like to share this on your personal blog please feel free or would like to add our family (specifically Keegan) to any and all prayer lists I am okay with that. Please feel free to head to our facebook page and participate. If you questions or need to get ahold of me I am at chupp {dot} beth {at}gmail {dot} com.
Thanks for all the prayers and support and hear is to hoping this is an easy successful surgery and what they removed is nothing at all!
With Love,
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