So we arrived Tues night to our home called "New Day". It is provided at a reasonable price by a non-profit and so great! WE pay less a day than the Jill House which is basically the Ronald McDonald house in the area but we have our own space vs a shared kitchen and living quarters so works out well for a family of 4. The Jill House is $70 a night and ours is $40 so a no brainer.. It has a full kitchen with all appliances, washer and dryer, 3 br and even a jet tub in the master! We had a few groceries we brought as I had planned on not having time to go to the store the first night. So glad I did that!
We gave the boys a quick bath and put to bed. Erik and I had a few seconds to ourselves to basically unpack and get to bed. Both of us nervous about next day and what it all would entail but prayer allowed both of us to sleep. Wine helped too :)
We had Elan's first appt. at 9:30 AM and he isn't allowed to eat or drink 8 hrs beforehand so we let him sleep as long as possible. We woke Finn up and fed him without Elan seeing. We then all drove to the Proton Beam Center which is about 15 minutes from the house.
We arrived and Finn played in the playroom which had Lego's so we were set! Elan, Erik and I met with Dr. Buchsbaum. He is one of the other doctors at the center and met with him as Dr. Douglas is on vacation this week. He was quite kind and is the doctor who cured the one AT/RT girl who had it spread to her spinal column. . This is basically as bad as it gets (Elan doesn't have it there). She is cancer free 4 years out. Dr. B is on the polar opposite of how he speaks than Dr. Douglas and the side effects. The side effects of radiation - even though using Proton Beam is 1/3 the toxicity of regular Photon beam is still very unknown esp with Elan's age. So basically we know it will land somewhere in the middle. The side effects are tolerable to us for sure. The basic ones are:
IQ lowered between 5 and 20 IQ points - he will be able to learn to read etc but things will take longer for him to comprehend - basically same as Erik and me :)
Hearing loss in right ear (side cancer is at)
signifigant height difference (where Doctors differ) if he was going to be 6 ft without the treatment as adult somewhere from 4 inches off to 1 1/2 ft off
Thyroid
Pituitary
Possible fertility loss
cataracts in later life
10% chance of other cancers until 5 and 5% life time chance.
All of these things pale in comparison to regular radiation side effects!
So to continue the day....
Dr. B was a bit crazy but really put Finn at ease. He was kind of all over the place but to give him some credit he was the only doctor there and had his pager going off so had to multitask. He has 2 kids himself both with serious health issues so can relate to what we are going through which is truly an odd comfort to us. One was at the neurologist at the time of our conversation.
Finn went in and out of the treatment area during Elan's first treatment and even was allowed to see Elan on the treatment table - pretty cool! We get to go in and put him on the table and hold him while the anesethologist puts him out every treatment. By Finn seeing it all really makes everything not so scary to him and allows him to be comfortable about the whole process. Here are a few photos of what it looks like.
I want to clarify things... AT/RT is awful but there are several kids out there cancer free 3 or more years out so there is hope for Elan. It is very, very aggressive and low prognosis with Elan having about 10% chance of becoming cancer free. This however is much better than what Presbyterian gave us of 0% when we turned down the standard protocol. If you have ever been around clinical trials or case studies everything is subjective. Presbyterian is really a great hospital and did a great job for us but they can only help us so much and deal with every type of pediatric cancer. The proton beam center has seen the majority of AT/RT kids as they are one of 3 places that specialize in treating pediatric cases. There are really only 2 published trials on AT/RT - one with 22 kids which is the Dana Farber protocol from Mass General and another retrospective of around 40 kids out of St. Jude. These are very, very poor sample sizes and don't give a great picture. The doctors here see AT/RT a lot and have had several cancer free outcomes so they are giving us hope based on evidence. Dr. B even chatted with us about the Dana Farber Protocol and the politics behind some of it. He honestly believes that by us doing the radiation first we have a better shot at cure. They put chemo first because of political reasons... as is often the case with science unfortunately! In this you have to remember are kids who didn't get the cancer caught early, kids who literally die on the operating table, kids who die from high dose chemo side effects (shutting down of organs, infections from immune system being so low etc). So basically there really is hope for our kiddo! The best thing we can do for him at this point is to create a positive environment, healthy food and vitamins plus this treatment. Oh and Thomas the Train too :). We are looking for a plan after this too but will be based on the MRI after treatment. WE are also going to meet with Dr. Guo in Chicago this weekend.
So to give you an idea of how the first day works - walk into building and then met with doctor to sign consent forms. Then take Elan into big room you see in photos above and put him under anestigia. Then they put a web mask on him so he doesn't move and line him completely up. They also lay him in a molding cast. These two things are what they made when we went up a week ago. THey put tabs on him as well so the beam is precisely where it needs to be. Then they robotically move the cycoloton around and put in metal plates so as to have the beam go directly to the locations they want it to. This first day they have a physicist on hand to look at all of it and put the plates into place for him. She was so sweet - our age and masters from Vanderbilt - of course I had to ask, right? There is a team of about 10 people in the room dedicated to Elan during the treatment - so much like the movies! The first day took about 2 hrs since they did a dry run to line it all up and then did the treatment. It should take only an hour going forward.
So Elan did FANTASTIC on the first day! I nursed him right away and he did great as always. Erik started to feed him and he pumped 4 tubes (8 oz) into him of his food pretty quickly. I picked him up to get ready to leave and he threw it all up - and it went everywhere! Poor baby! The doctor and everyone else said very unlikely from radiation since so soon after and esp since we filled him up so fast. Just slow it down!
So Elan was so great that we stopped at the local grocery store on the way home to load up on fresh fruits and veggies. Fun place called the Bloomingfoods a local co-op. We did find another place we will go to from now on that is also local and has organic since we are only staying 6 weeks and the coop is $90... still fun.
So we arrived home and had this waiting at the door! From Erik's friend at work - John Kopko and family! 50 roses! So unexpected and lovely! Thanks so much!
So Erik and I really wanted to meet the friends here in town so we headed to the congregation Bible Study - even though almost 45 minutes late. Everyone was so sweet. They have had several other people come through for the Proton Center but not a baby Elan's age. Everyone offered help and support which was so loving. One of the brothers is a medical doctor teaching at the university to 1st and 2nd year med students and so really knowledgeable of what we are going through. Another one does business with Dr. B so chatted with us about that. Small town for sure! We then headed to Krogers to get a few more basic things we couldn't get at Bloomingfoods... a cute photo
We gave the boys a quick bath and put to bed. Erik and I had a few seconds to ourselves to basically unpack and get to bed. Both of us nervous about next day and what it all would entail but prayer allowed both of us to sleep. Wine helped too :)
We had Elan's first appt. at 9:30 AM and he isn't allowed to eat or drink 8 hrs beforehand so we let him sleep as long as possible. We woke Finn up and fed him without Elan seeing. We then all drove to the Proton Beam Center which is about 15 minutes from the house.
We arrived and Finn played in the playroom which had Lego's so we were set! Elan, Erik and I met with Dr. Buchsbaum. He is one of the other doctors at the center and met with him as Dr. Douglas is on vacation this week. He was quite kind and is the doctor who cured the one AT/RT girl who had it spread to her spinal column. . This is basically as bad as it gets (Elan doesn't have it there). She is cancer free 4 years out. Dr. B is on the polar opposite of how he speaks than Dr. Douglas and the side effects. The side effects of radiation - even though using Proton Beam is 1/3 the toxicity of regular Photon beam is still very unknown esp with Elan's age. So basically we know it will land somewhere in the middle. The side effects are tolerable to us for sure. The basic ones are:
IQ lowered between 5 and 20 IQ points - he will be able to learn to read etc but things will take longer for him to comprehend - basically same as Erik and me :)
Hearing loss in right ear (side cancer is at)
signifigant height difference (where Doctors differ) if he was going to be 6 ft without the treatment as adult somewhere from 4 inches off to 1 1/2 ft off
Thyroid
Pituitary
Possible fertility loss
cataracts in later life
10% chance of other cancers until 5 and 5% life time chance.
All of these things pale in comparison to regular radiation side effects!
So to continue the day....
Dr. B was a bit crazy but really put Finn at ease. He was kind of all over the place but to give him some credit he was the only doctor there and had his pager going off so had to multitask. He has 2 kids himself both with serious health issues so can relate to what we are going through which is truly an odd comfort to us. One was at the neurologist at the time of our conversation.
Finn went in and out of the treatment area during Elan's first treatment and even was allowed to see Elan on the treatment table - pretty cool! We get to go in and put him on the table and hold him while the anesethologist puts him out every treatment. By Finn seeing it all really makes everything not so scary to him and allows him to be comfortable about the whole process. Here are a few photos of what it looks like.
This is only the treatment area but we hope to see the whole cyclotron during the monthly tours given. They are only done once a month since the whole system has to be shut down as it is radioactive when up. We were able to watch everything on the monitors too. Pretty cool! The Proton Beam Center came out of the Physics dept. at Indiana University and it is the first one in the nation. It was the testing one for NASA so basically anything that has gone into space has gone through this center. It is rather funny to be going into the Physics lab as a patient instead of for chatting with the professors.
I want to clarify things... AT/RT is awful but there are several kids out there cancer free 3 or more years out so there is hope for Elan. It is very, very aggressive and low prognosis with Elan having about 10% chance of becoming cancer free. This however is much better than what Presbyterian gave us of 0% when we turned down the standard protocol. If you have ever been around clinical trials or case studies everything is subjective. Presbyterian is really a great hospital and did a great job for us but they can only help us so much and deal with every type of pediatric cancer. The proton beam center has seen the majority of AT/RT kids as they are one of 3 places that specialize in treating pediatric cases. There are really only 2 published trials on AT/RT - one with 22 kids which is the Dana Farber protocol from Mass General and another retrospective of around 40 kids out of St. Jude. These are very, very poor sample sizes and don't give a great picture. The doctors here see AT/RT a lot and have had several cancer free outcomes so they are giving us hope based on evidence. Dr. B even chatted with us about the Dana Farber Protocol and the politics behind some of it. He honestly believes that by us doing the radiation first we have a better shot at cure. They put chemo first because of political reasons... as is often the case with science unfortunately! In this you have to remember are kids who didn't get the cancer caught early, kids who literally die on the operating table, kids who die from high dose chemo side effects (shutting down of organs, infections from immune system being so low etc). So basically there really is hope for our kiddo! The best thing we can do for him at this point is to create a positive environment, healthy food and vitamins plus this treatment. Oh and Thomas the Train too :). We are looking for a plan after this too but will be based on the MRI after treatment. WE are also going to meet with Dr. Guo in Chicago this weekend.
So to give you an idea of how the first day works - walk into building and then met with doctor to sign consent forms. Then take Elan into big room you see in photos above and put him under anestigia. Then they put a web mask on him so he doesn't move and line him completely up. They also lay him in a molding cast. These two things are what they made when we went up a week ago. THey put tabs on him as well so the beam is precisely where it needs to be. Then they robotically move the cycoloton around and put in metal plates so as to have the beam go directly to the locations they want it to. This first day they have a physicist on hand to look at all of it and put the plates into place for him. She was so sweet - our age and masters from Vanderbilt - of course I had to ask, right? There is a team of about 10 people in the room dedicated to Elan during the treatment - so much like the movies! The first day took about 2 hrs since they did a dry run to line it all up and then did the treatment. It should take only an hour going forward.
So Elan did FANTASTIC on the first day! I nursed him right away and he did great as always. Erik started to feed him and he pumped 4 tubes (8 oz) into him of his food pretty quickly. I picked him up to get ready to leave and he threw it all up - and it went everywhere! Poor baby! The doctor and everyone else said very unlikely from radiation since so soon after and esp since we filled him up so fast. Just slow it down!
So Elan was so great that we stopped at the local grocery store on the way home to load up on fresh fruits and veggies. Fun place called the Bloomingfoods a local co-op. We did find another place we will go to from now on that is also local and has organic since we are only staying 6 weeks and the coop is $90... still fun.
So we arrived home and had this waiting at the door! From Erik's friend at work - John Kopko and family! 50 roses! So unexpected and lovely! Thanks so much!
Elan and Finn I miss u guys so much.
ReplyDeleteWow! Im so glad you are blogging! This is such a great way to get the details Ive been wanting! Im really glad the friends there are so supportive. Stay as close to them as much as you are able. Love you guys!
ReplyDeleteHello Miller family. Note from the Banks family sending our love to yours!! Wishing you the best. Miss you all
ReplyDeleteNoni and Charles