Sam began his chemotherapy yesterday. So far, he's been feeling ok - just a little tired and slightly nauseous. From what we've heard and read, this chemotherapy is much more tolerable than what he had 7 years ago. I'm sure as it builds up in his system, he will start feeling the effects a little more strongly. We had been waiting to hear back from the doctor about a blood test that will determine what some of his side effects will be, and unfortunately it came back that he has "the diarrhea gene". I don't think that you need me to explain what that might mean. So this chemo might be a little bit more uncomfortable than it would for people without that gene.
Yesterday's chemo was at the hospital, but today's was at home. It was very convenient. It will take some time to get used to having a stranger in our family room every day for 4 hours. We really liked this first nurse, so we are hoping that she will be here the majority of the time.
We did get some good news that Sam's bone marrow biopsy came back clear! We are so relieved. This was the last possible place that the cancer could have spread, so it is extremely good news that it hasn't.
Taylor has been really good about everything. She seems very interested in "Dada's special medicine" and asked a lot of questions. We think she may have a future in the medical field.
I had to write down one of my favorite verbal exchanges with Taylor. She said this to me on Sunday night on my way out:
Me: "Taylor, I'm going to book club"
Taylor: "I'm going to go to college some day!"
Me: "Oh you are? That's wonderful!"
Taylor: "And you will come with me, ok? And dada will come too. We will go to college together. Because I will miss you."
I just needed to write it down, so that I can refer to this in 16 years when she is kicking me out of her dorm room on move-in day!
Tuesday, June 26, 2012
Friday, June 22, 2012
The Game Plan
We had our consult with Dr. Rubin yesterday, and we received a ton of information, including what seems like a very aggressive game plan to attack these cancer cells. Sam will begin chemotherapy on Monday. His chemo cycles will be approximately 3-4 weeks, depending on how his immune system recovers each time. His cycles will consist of:
Week 1: 5 days of Temozolomide by mouth, 5 days of Irinotecan by IV
Week 2: 5 days of Irinotecan by IV
Week 3: Rest/Recover
It looks like he will have about 12 rounds of chemotherapy total. One thing that we are very happy about is that, aside from the first administration of the chemo, all of it will be able to be done at home with a home nurse. So this will minimize our LONG trips to the University of Chicago (yesterday took us 2 hours to get home!).
He will have some other drugs that he will be taking to combat some of the symptoms of chemo, plus some antibiotics to help prevent infections. After 2 rounds of chemo, he will get re-scanned to see how the tumor is responding. If, after 2 rounds, the tumor has shrunk significantly, he will have his surgery at that point. If not, they will check again after 4 rounds and possibly do the surgery then. The rest of the chemo will be "clean up" chemo, to get any lingering cells.
A recurrence of Ewing's (or any type of cancer really) is always more threatening than the first time around. So please pray that the chemotherapy does it's job and kills as many of these cancer cells as possible. Also, please pray that the side effects of chemotherapy are kept to a minimum. Last time, he had a terrible time with chemo, but these are new drugs so we don't really know what to expect.
Thank you again to everyone for your continued support. We will continue to keep you posted on how he is doing.
Wednesday, June 20, 2012
Updates
Sam Update:
Sam is out of surgery. He isn't home yet, but I spoke with him and he is feeling fine. He is a little sore from the bone marrow biopsy, but not too bad. They gave him a script for some painkillers, which he will be picking up on his way home! His port isn't in his chest this time, it is in his shoulder. I can't quite picture it! We will find out about the results of his bone marrow biopsy soon. Tomorrow, we will head back up to the University of Chicago to meet with his oncologist to discuss his treatment plan.
Baby Update:
Overall, the ultrasound went well today. The baby's kidneys are still dilated; they are actually slightly more dilated than before. The doctor took a long time looking at the baby's kidney function, bladder, and amniotic fluid level and determined that all are functioning fine. This means that the dilation is probably being caused by a blockage somewhere between the kidneys and the ureter. At this point, it probably won't clear up on it's own, and may require a minor surgery to fix after her birth. But overall, seeing that her kidneys and bladder were fine ruled out any truly serious issues, so we are comforted by that news. The cardiologist also said that her heart looked perfectly normal. The bright spots are still there, but they are not anything that seemed to concern him. He actually said that it is quite common (about 6% of pregnancies show bright spots) and didn't see a reason to have to check up on it again. So that was quite a relief.
They did find that the placenta looks low, and is possibly covering some of the cervical opening. If it doesn't move up on it's own, then we will be looking at a planned C-section. I was a little bummed about that news, but with our situation, having a planned date of delivery might actually be the best thing for our family!
The baby is measuring at 1 pound 11 ounces. She was kicking and moving around like crazy during the ultrasound. It was wonderful seeing her, and amazing that she is as active as her big sister was!
I just wanted to say thanks again to everyone for your thoughts, prayers, well-wishes, and offerings of help. We truly appreciate it, and are grateful to have such wonderful people in our lives. As we've witnessed before, these trying times really do show us the true nature of our friends and family. We are very blessed.
Sam is out of surgery. He isn't home yet, but I spoke with him and he is feeling fine. He is a little sore from the bone marrow biopsy, but not too bad. They gave him a script for some painkillers, which he will be picking up on his way home! His port isn't in his chest this time, it is in his shoulder. I can't quite picture it! We will find out about the results of his bone marrow biopsy soon. Tomorrow, we will head back up to the University of Chicago to meet with his oncologist to discuss his treatment plan.
Baby Update:
3-D pic!
Profile pic!
Overall, the ultrasound went well today. The baby's kidneys are still dilated; they are actually slightly more dilated than before. The doctor took a long time looking at the baby's kidney function, bladder, and amniotic fluid level and determined that all are functioning fine. This means that the dilation is probably being caused by a blockage somewhere between the kidneys and the ureter. At this point, it probably won't clear up on it's own, and may require a minor surgery to fix after her birth. But overall, seeing that her kidneys and bladder were fine ruled out any truly serious issues, so we are comforted by that news. The cardiologist also said that her heart looked perfectly normal. The bright spots are still there, but they are not anything that seemed to concern him. He actually said that it is quite common (about 6% of pregnancies show bright spots) and didn't see a reason to have to check up on it again. So that was quite a relief.
They did find that the placenta looks low, and is possibly covering some of the cervical opening. If it doesn't move up on it's own, then we will be looking at a planned C-section. I was a little bummed about that news, but with our situation, having a planned date of delivery might actually be the best thing for our family!
The baby is measuring at 1 pound 11 ounces. She was kicking and moving around like crazy during the ultrasound. It was wonderful seeing her, and amazing that she is as active as her big sister was!
I just wanted to say thanks again to everyone for your thoughts, prayers, well-wishes, and offerings of help. We truly appreciate it, and are grateful to have such wonderful people in our lives. As we've witnessed before, these trying times really do show us the true nature of our friends and family. We are very blessed.
Tuesday, June 19, 2012
The Waiting Game...
Sam Update:
We don't have a whole lot of new information about Sam - we've really just been waiting to get everything started. We both forgot how annoying it can be to wait around for phone calls, insurance pre-approvals, etc.!
Sam did have a CT scan of his chest today, which did come back completely clear. We are thrilled about that because Ewing's sarcoma often metastasizes to the lungs. They did check his lungs in his first round of scans a couple of weeks ago, but the CT gave a more full picture. So we are very grateful that everything looked good.
He will go in tomorrow to have surgery to put in his port. He will also get a bone marrow biopsy while he is under anesthesia.
Thursday, we will go in to meet with Sam's new oncologist, Dr. Rubin, to go over his treatment plan. As some of you know, Dr. Nachman, Sam's previous oncologist, passed away suddenly last summer. Dr. Rubin worked closely with Dr. Nachman, so we are completely confident that we will get the same level of care as last time. Dr. Nachman will be missed though - he and Sam were very close.
Baby Update:
While Sam is at his surgery tomorrow, Taylor and I will be taking a trip up to the high-risk OBGYN to get another ultrasound. This one will be accompanied by a pediatric cardiologist, who will look at the baby's heart to make sure everything looks fine. As I mentioned before, the baby has a mild pyelectasis, which is a dilation of her kidneys. She also has an echo cardio foci, which is a bright spot on her heart. Both of these things, we've been told, are very common and usually are nothing. But to be on the safe side, the cardiologist will make sure everything is ok. We are very excited to be seeing some new ultrasound pics of our little girl! I am currently 24 weeks and feeling great. The baby has been kicking like crazy.
Our Father's Day!
We had a wonderful Father's Day weekend. It was very relaxing - almost like our "calm before the storm". On Friday, we visited Oswego Prairie Fest, where Taylor enjoyed playing with the chickens and baby goats at the petting zoo. She also watched a gymnastics show. We knew it was time to go home when she had a meltdown because she couldn't go "do flips with the girls"!
On Saturday, Sam and Taylor had their first swim class of the season! Taylor had a blast. She loves being in the water. She was not a fan of being dunked under water, but surprisingly she didn't cry! She just kept saying "dada don't do that anymore!".
On Sunday, Taylor and I went to visit my dad for a little bit in the morning. On the way there, we stopped at the store to pick up my annual Father's Day gift for my dad (cashews). While we were standing in line, Taylor picked up a pack of blue tic-tacs and shouted "Oh, mama, Bapa will be so excited to have these!" so, of course, I had to buy them! When we got there, she handed them to Bapa and said "Here, I got you jelly beans! Let's try some!" I wish I could have gotten a picture of her face when she actually tried the "jelly beans"! The rest of the afternoon was spent relaxing outside with Taylor, and getting some ice cream at the Creamery, which was exactly what Sam wanted.
We don't have a whole lot of new information about Sam - we've really just been waiting to get everything started. We both forgot how annoying it can be to wait around for phone calls, insurance pre-approvals, etc.!
Sam did have a CT scan of his chest today, which did come back completely clear. We are thrilled about that because Ewing's sarcoma often metastasizes to the lungs. They did check his lungs in his first round of scans a couple of weeks ago, but the CT gave a more full picture. So we are very grateful that everything looked good.
He will go in tomorrow to have surgery to put in his port. He will also get a bone marrow biopsy while he is under anesthesia.
Thursday, we will go in to meet with Sam's new oncologist, Dr. Rubin, to go over his treatment plan. As some of you know, Dr. Nachman, Sam's previous oncologist, passed away suddenly last summer. Dr. Rubin worked closely with Dr. Nachman, so we are completely confident that we will get the same level of care as last time. Dr. Nachman will be missed though - he and Sam were very close.
Baby Update:
While Sam is at his surgery tomorrow, Taylor and I will be taking a trip up to the high-risk OBGYN to get another ultrasound. This one will be accompanied by a pediatric cardiologist, who will look at the baby's heart to make sure everything looks fine. As I mentioned before, the baby has a mild pyelectasis, which is a dilation of her kidneys. She also has an echo cardio foci, which is a bright spot on her heart. Both of these things, we've been told, are very common and usually are nothing. But to be on the safe side, the cardiologist will make sure everything is ok. We are very excited to be seeing some new ultrasound pics of our little girl! I am currently 24 weeks and feeling great. The baby has been kicking like crazy.
Our Father's Day!
We had a wonderful Father's Day weekend. It was very relaxing - almost like our "calm before the storm". On Friday, we visited Oswego Prairie Fest, where Taylor enjoyed playing with the chickens and baby goats at the petting zoo. She also watched a gymnastics show. We knew it was time to go home when she had a meltdown because she couldn't go "do flips with the girls"!
On Saturday, Sam and Taylor had their first swim class of the season! Taylor had a blast. She loves being in the water. She was not a fan of being dunked under water, but surprisingly she didn't cry! She just kept saying "dada don't do that anymore!".
On Sunday, Taylor and I went to visit my dad for a little bit in the morning. On the way there, we stopped at the store to pick up my annual Father's Day gift for my dad (cashews). While we were standing in line, Taylor picked up a pack of blue tic-tacs and shouted "Oh, mama, Bapa will be so excited to have these!" so, of course, I had to buy them! When we got there, she handed them to Bapa and said "Here, I got you jelly beans! Let's try some!" I wish I could have gotten a picture of her face when she actually tried the "jelly beans"! The rest of the afternoon was spent relaxing outside with Taylor, and getting some ice cream at the Creamery, which was exactly what Sam wanted.
Wednesday, June 13, 2012
A New Hurdle...
Hello friends and family,
Unfortunately, as many of you have already known, last week was Sam's 7 year check-up with his oncologist, and we received some surprising and upsetting news. His initial scans came back showing a small tumor near the site of his original tumor. After extensive testing, we received a phone call today with the news that the tumor is, in fact, Ewing's sarcoma once again.
Luckily, we caught it very early. It is a small tumor, is very operable, and hasn't been seen anywhere else in his body. He is also not in any kind of pain. This is all a complete contrast to what we experienced last time - the first time around, his tumor was very large, causing excruciating pain, and it's ability to be removed was questionable. We are feeling optimistic that this relapse will not be as challenging to overcome as it was the first time around.
We will find out tomorrow or Friday about his oncologist's recommended course of treatment, and will probably begin as early as possible, hopefully sometime next week. Most likely, this will involve chemotherapy followed by surgery.
Obviously, things are a made slightly more complicated this time around,
because of our daughter, and having a baby on the way. The goal is to
get Sam nice and healthy for our little girl's arrival in early
October.
Overall, we are stressed and worried but trying to remain positive knowing that we caught it early and it is treatable. Doctors are optimistic as well. Sam is very positive, and says that when this is all over, he is taking the kids and I to Hawaii for a victory vacation! We will be looking forward to that!
We will continue to update as often as we can on this blog, so please check back often. You can also become a "follower" of the blog, which I believe notifies you when a new update has been made.
To those of you who have sent us emails, text messages, or left a voicemail, thank you SO much for your support. We haven't had the opportunity to respond, but please know that your support and thoughtfulness is greatly appreciated.
Thank goodness for our wonderful daughter, who has been our source of comic relief for the week! Here are a couple of pictures that made us smile:
We thought she was upstairs napping... until we went up and found that she had moved her chair to the top of the stairs and was just hanging out!
Playing with playdough. Her favorite thing to do is to make a bunch of snakes, then make a bunch of pillows and blankets and put them to bed!
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