Between radiation, kids, E3 and just plain ole life, we're a little tired. I've been a slacker about posting any updates and I apologize.
E. got his PICC line re-inserted on Monday and is ready to begin Round #2 of chemotherapy tomorrow. As you may recall, tomorrow is a doozy of a day . . . radiation, doctor appointments and then the LONG Cisplatin IV Infusion. He'll also get his pump back, for his four days of 5-FU treatments.
As for how is E. doing . . . he is doing surprisingly well. The biggest side effect so far has been fatigue. He tires easily and doesn't have much energy. An afternoon nap is always appreciated (but hey, who doesn't appreciate an afternoon nap?). He has had some nausea, but no actual vomitting. His tummy is very gassy and the frequent belching causes some discomfort. There have also been episodes of short intense periods of pain, but he indicates they are still manageable. Having said all that, he is not bed-ridden, he still up and about each day and he still has a great attitude (and a sense of humor that keeps up both frequently in stitches). His doctors seem surprised he is responding so well given the intense course of radiation and rounds of chemotherapy. We're cautiously optimistic that things will continue so positively.
The support of family and friends has been overwhelming. The folks at E.'s work have rallied around him like family . . . cards, phone calls, gift cards, donations and meals. We are so thankful for all that our friends, from both near and far, have done for us. It is comforting and reassuring to know that not only are people thinking, praying and caring for us, but also for our children. It means a lot. I also can't tell you how nice it is to not to have to worry about dinner . . . knowing that we will all have something good to eat each evening. We are surrounded by good and kind people. Thank you.
Each and every day as we look in awe and wonder at E3, we are reminded that miracles really do happen. He is an amazing little fellow (with some really bad hair days!) who has us all wrapped around his little finger. I will post more photos soon so you can see for yourself just how cute he really is.
S.
Tuesday, March 31, 2009
Thursday, March 19, 2009
UCDavis
We met with the team at UCDavis . . . Dr. C., the thoracic surgeon, Dr. E., the resident doctor, and RN C., the oncology nurse.
Long story short . . . surgery is "off the table."
For Stage IV Esophageal Cancer, the risk of surgery does not outweigh the benefits. The recommendation is for definitive chemotherapy and radiation, which means the MAX dose of everything. (*****Edited to add: If E. does receive the MAX dose of radiation, then the possibility of surgery is eliminated.****)
Approximately four to six weeks after E. finishes with his 28 radiation treatments and his 2 rounds of chemotherapy, he will be rescanned and restaged. While the likelihood is not great, we are hoping and praying that he'll have responded enough to treatment to be restaged to Stage III, in which case he would be a possible candidate for surgery after all.
This latest news hits hard.
S.
Long story short . . . surgery is "off the table."
For Stage IV Esophageal Cancer, the risk of surgery does not outweigh the benefits. The recommendation is for definitive chemotherapy and radiation, which means the MAX dose of everything. (*****Edited to add: If E. does receive the MAX dose of radiation, then the possibility of surgery is eliminated.****)
Approximately four to six weeks after E. finishes with his 28 radiation treatments and his 2 rounds of chemotherapy, he will be rescanned and restaged. While the likelihood is not great, we are hoping and praying that he'll have responded enough to treatment to be restaged to Stage III, in which case he would be a possible candidate for surgery after all.
This latest news hits hard.
S.
Tuesday, March 17, 2009
Good days and . . .
E. says, "There's gonna be good days. And there's gonna be bad days."
Today was a bad day.
Today was a bad day.
Monday, March 16, 2009
1/4 the way done with radiation
I know we're overdue with an update. To re-cap the last week . . .
E. finished up with his second chemotherapy medication (the 5-FU given by IV pump for four days) on Sunday, March 8, 2009. Yup, that was the day that Peanut was born. And we're both thankful that I didn't pull out his IV in the midst of labor . . . since I'm told I got a little violent during the big event. Oops.
The couple of days in the hospital for Peanut's birth made us both very tired. As you know, the hospital is no place to get any rest. It took a bit to "bounce back" from the weekend, and for E. in his weakened state, "bouncing back" was even more difficult. He has been even more tired than usual and has been napping frequently. Thankfully, I think he is almost there, as today he seemed to have more energy and just looked a little more rested.
E. continues to receive radiation daily (although we both enjoyed the weekend off) and he's 1/4 of the way done. He's reported some immediate side effects from the radation. One day, he was light-headed and disoriented after radation and on another day, he said he felt like his hair was tingling. Today, he said he felt some hotness on his back. He did have several days of sore ears and a sore throat. It is difficult to know if his symptoms are a side effect of the chemotherapy and/or radiation, or if they are the result of a virus. The ears seem to feel better now, but his throat continues to bother him. The doctor indicated it was probably a yeast infection caused by the medication and as you may remember, it is highly probable that his entire digestive tract (from entrance to exit) will be affected with sores. For now, E. is gargling with salt water, but the doctor can also prescribe a mouthwash if need be.
On Friday and Saturday, E. had some severe abdominal cramping. It is very difficult to watch him in pain. I called the doctor who gladly prescribed some pain medication, but of course, E. didn't want to get it filled. At least we have the prescription now in case E. does decide he wants it. E. now thinks that he may have had a touch of a stomach virus, which is entirely possible. Again, it is hard to know what is a virus and what is a side effect. E.'s weight continues to be a concern. Despite his best efforts and force feeding himself, E.'s weight continues to drop. He's lost about 10 lbs. since beginning treatment. He sees both of his oncologists weekly to monitor his weight, as well as how he is responding to treatment.
On Wednesday, we have a consultation appointment with a thoracic surgeon at UCDavis. E. initially thought it would be a waste of time since we were told he wasn't a candidate for surgery and that wouldn't change unless there was a marked improvement after the chemotherapy and radiation. I, on the other hand, thought a consultation would definitely be worth our time as the surgeon may have a different opinion. Even if the surgeon agreed that the possibility of surgery would be determined after the completion of treatment, I thought that it would be helpful to already have E.'s files at UCDavis and have him be an established patient, thereby hopefully speeding up the process. And you know what? E. said I was right! (Mark that one down in history.)
E3 continues to bring us smiles every day. He is surrounded by love and showered with attention. As much as a little guy can be spoiled in one week, he is! Everywhere we go, we are told that he looks exactly like his daddy. And he does! I keep teasing E. that he's a big gene hog and I was simply the incubator for his "mini-me." I finally consoled myself that E3 had my long fingers, but that little bubble was burst when E.'s cousins and sister informed me that long fingers were a family trait. So much for that. As much as I tease him, I am thrilled that E3 shares such a resemblance with his handsome daddy. I love watching the two of them together.
E. finished up with his second chemotherapy medication (the 5-FU given by IV pump for four days) on Sunday, March 8, 2009. Yup, that was the day that Peanut was born. And we're both thankful that I didn't pull out his IV in the midst of labor . . . since I'm told I got a little violent during the big event. Oops.
The couple of days in the hospital for Peanut's birth made us both very tired. As you know, the hospital is no place to get any rest. It took a bit to "bounce back" from the weekend, and for E. in his weakened state, "bouncing back" was even more difficult. He has been even more tired than usual and has been napping frequently. Thankfully, I think he is almost there, as today he seemed to have more energy and just looked a little more rested.
E. continues to receive radiation daily (although we both enjoyed the weekend off) and he's 1/4 of the way done. He's reported some immediate side effects from the radation. One day, he was light-headed and disoriented after radation and on another day, he said he felt like his hair was tingling. Today, he said he felt some hotness on his back. He did have several days of sore ears and a sore throat. It is difficult to know if his symptoms are a side effect of the chemotherapy and/or radiation, or if they are the result of a virus. The ears seem to feel better now, but his throat continues to bother him. The doctor indicated it was probably a yeast infection caused by the medication and as you may remember, it is highly probable that his entire digestive tract (from entrance to exit) will be affected with sores. For now, E. is gargling with salt water, but the doctor can also prescribe a mouthwash if need be.
On Friday and Saturday, E. had some severe abdominal cramping. It is very difficult to watch him in pain. I called the doctor who gladly prescribed some pain medication, but of course, E. didn't want to get it filled. At least we have the prescription now in case E. does decide he wants it. E. now thinks that he may have had a touch of a stomach virus, which is entirely possible. Again, it is hard to know what is a virus and what is a side effect. E.'s weight continues to be a concern. Despite his best efforts and force feeding himself, E.'s weight continues to drop. He's lost about 10 lbs. since beginning treatment. He sees both of his oncologists weekly to monitor his weight, as well as how he is responding to treatment.
On Wednesday, we have a consultation appointment with a thoracic surgeon at UCDavis. E. initially thought it would be a waste of time since we were told he wasn't a candidate for surgery and that wouldn't change unless there was a marked improvement after the chemotherapy and radiation. I, on the other hand, thought a consultation would definitely be worth our time as the surgeon may have a different opinion. Even if the surgeon agreed that the possibility of surgery would be determined after the completion of treatment, I thought that it would be helpful to already have E.'s files at UCDavis and have him be an established patient, thereby hopefully speeding up the process. And you know what? E. said I was right! (Mark that one down in history.)
E3 continues to bring us smiles every day. He is surrounded by love and showered with attention. As much as a little guy can be spoiled in one week, he is! Everywhere we go, we are told that he looks exactly like his daddy. And he does! I keep teasing E. that he's a big gene hog and I was simply the incubator for his "mini-me." I finally consoled myself that E3 had my long fingers, but that little bubble was burst when E.'s cousins and sister informed me that long fingers were a family trait. So much for that. As much as I tease him, I am thrilled that E3 shares such a resemblance with his handsome daddy. I love watching the two of them together.
S.
Tuesday, March 10, 2009
Introducing EWH III
Our precious miracle arrived three weeks early, but was still perfect in every way.
EWH III (also known as E3 or Little E, or the infamous Peanut) made his arrival on Sunday, March 8, 2009 at 12:43 pm. He weighed in at 6 pounds 5 ounces and was 20 1/4 inches long.
He looks exactly like his daddy! And is just as loved!
Thursday, March 5, 2009
Treatment Day #1 over
Once again, flexibility was key. Unfortunately, our frustration almost got the best of us. I was gruff and confrontational, ready to burst into tears. E. was silently fuming and muttering profanities, ready to throttle the next person who screwed up. What a team we were.
Here's what happened . . . a couple of days ago, we received a phone call to confirm E.'s chemotherapy appointment at noon although we had it on the calendar for 11:00. The timing of the chemotherapy was important because radiation was scheduled at 2:30...and we were told chemotherapy would take three hours. Needless to say, if chemotherapy didn't start until noon, it would overlap with the radiation appointment and something would have to give. The radiation appointment could not be moved due to their full schedule, so next I attempted to reschedule the chemotherapy appointment . . . the only other time available was at 10:00 am. That would have been fine, BUT we had a doctor appointment with the oncologist at 10:00 am. So, the next reasonable course of action would be to reschedule the doctor's appointment, which is what I attempted to do. It was then that I learned that E. supposedly was not on the calendar for any office visit and did not need to see the doctor prior to chemotherapy and radiation. Fine by us, one less thing to worry about. Everything was settled then, right? Wrong!
We arrived at chemotherapy at 10:00 am only to discover that there were no orders for E.'s chemotherapy. A quick call to the doctor's office would clear this up, right? Wrong again! Turns out, the doctor won't let you begin chemotherapy without seeing you first. And we were supposed to know that how? The doctor's office said we could just reschedule our chemotherapy for 11:00 am, but what they didn't understand is that the infusion center had a full schedule and the 11:00 am appointments were filled, as were the noon appointments now. Then they actually suggested that E. could begin chemotherapy on a different day then. Since a visit to the doctor's office was clearly a necessity, we dashed across town to meet with Dr. B. (This is not the first time we've had major miscommunication or total lack of communication from this office and both E. and I were ready to "voice" our concerns.)
Dr. B. met with us and offered obligatory apologies. He listened to E.'s heart, pounded on his back and chest a few times and declared him ready to begin chemotherapy. We had to see the doctor for THAT?!? He assured us that things would be smooth sailing from here on out. He explained the process to get the 5-FU pump through the home health service today (even though we were supposed to have received this information last week and I made no less than four phone calls seeking this information, only to be told each time that someone would be calling us back). He shipped us out the door and once again assured us that the orders would be faxed to the infusion center and would be waiting for our arrival.
Ha! We drove quicker than the fax. Still no orders. Several calls from the infusion nurses and 45 minutes later, the faxed orders finally arrived. The orders then had to be sent to the in-house pharmacy so that the IV bags could be prepared. Our ray of sunshine in this very cloudy day was "Tami S." . . . the awesome infusion nurse who worked her butt off for us and made sure everything in her control went off without a hitch. Unfortunately, she also had to be the bearer of bad news. Remember how we were told that the Cisplatin chemotherapy would take about 3 hours? Wrong again. She informed us that it would be a minimum of six hours. SIX hours! First, E. would receive approximately 2 hours of pre-hydration fluid (since chemotherapy is extremely hard on the kidneys, proper hydration is extremely important). That would be followed by about 45 minutes of "pre-meds" (steroids and nausea medication) and then he would receive the actual chemotherapy of Cisplatin for about an hour and a half. Finally, he would receive another 2 hours of post-hydration fluid. Yikes. Obviously, the perfectly timed out schedule was once again in shambles.
Thanks to the quick thinking of Angel Nurse Tami, E. received his 2 hours of pre-hydration fluid and then she quickly sent us to the other building for his radiation (we also received E.'s schedule for radiation . . . every morning, Monday through Friday, until April 10th . . . a total of 28 radiation treatments). As soon as we returned, the IV's were resumed and he was able to receive the rest of his treatment. E. watched a little tv, I worked on thank you notes and we played many, many hands of cards. The home health service arrived at about 6:00 pm and brought the pump and accessories. We received the necessary instructions and when he was eventually done with his Cisplatin, the 5-FU pump was then connected. I think it was well after 7:00 pm by the time we finally left the hospital.
E. said he was hungry for chicken pot pie and I knew we couldn't miss the opportunity to get some food into him when he essentially had an appetite. So, off to Marie Callendar's we went. And he actually ate! He even followed it up with part of a slice of sugar-free Razzleberry pie! A trip to the pharmacy yielded four prescriptions for anti-nausea medications and we finally got home about 9:30 pm. I'm sorry I didn't update everyone last night, but we were both wiped out. E. was in good spirits all day and had a great attitude (once we got things rolling, that is).
He didn't sleep great, but the PICC line, IV and 5-FU pump make things a little uncomfortable for him. He's a side sleeper, but has had to resort to sleeping on his back, which he definitely doesn't like. Hydration remains super important and he is attempting to drink as much as he can. Of course, this means lots of trips to the bathroom . . . day and night. He awoke this morning and said he felt okay, but a "little nauseous." We ran into town for his daily radiation treatment (we were in and out, and he was completed radiated in 15 to 20 minutes . . . I kid you not). Since then, he has spent the day dozing for the most part. He opens his eyes to watch a few minutes of tv but is asleep again in mere moments. He undoubtedly needs all the rest he can get.
So, if any of you are still confused about the treatment protocol (which, keep in mind, can change at any given moment), here's how it will work . . .
* Cisplatin . . . LONG chemotherapy/infusion days . . . Day #1 (March 4th) and Day #29 (April 1st)
* 5-FU . . . 24 hour drip via pump . . . Days #1-#5 (March 4th-March 8th) and Days #29-#33 (April 1st-April 5th)
* Radiation . . . quick 15-20 minute morning appointments . . . daily, Monday through Friday, until April 10th (a total of 28 radiation treatments)
Oh, and we finally did speak to an oncologist at UCDavis. He indicated that this treatment regimen was the traditional treatment for esophageal cancer, although UCDavis typically uses something different now (based on their own research). He recommended that we continue with the treatment as planned since it has already begun. He would also confer with a surgeon at UCDavis and review E.'s case with him . . . to see if the surgeon has any further recommendations about possible surgery, in the near or distant future.
Many, many thanks for the blog comments, texts, phone calls, e-mails, prayers, thoughts and warm wishes. As stoic as E. sometimes seems, I know it touches his heart as it does mine. And as for the help with the boys (babysitting, transporting, etc.) and the delicious meals . . . thank you doesn't seem like enough. The kindess of family, friends, and complete strangers continues to amaze me.
S.
Here's what happened . . . a couple of days ago, we received a phone call to confirm E.'s chemotherapy appointment at noon although we had it on the calendar for 11:00. The timing of the chemotherapy was important because radiation was scheduled at 2:30...and we were told chemotherapy would take three hours. Needless to say, if chemotherapy didn't start until noon, it would overlap with the radiation appointment and something would have to give. The radiation appointment could not be moved due to their full schedule, so next I attempted to reschedule the chemotherapy appointment . . . the only other time available was at 10:00 am. That would have been fine, BUT we had a doctor appointment with the oncologist at 10:00 am. So, the next reasonable course of action would be to reschedule the doctor's appointment, which is what I attempted to do. It was then that I learned that E. supposedly was not on the calendar for any office visit and did not need to see the doctor prior to chemotherapy and radiation. Fine by us, one less thing to worry about. Everything was settled then, right? Wrong!
We arrived at chemotherapy at 10:00 am only to discover that there were no orders for E.'s chemotherapy. A quick call to the doctor's office would clear this up, right? Wrong again! Turns out, the doctor won't let you begin chemotherapy without seeing you first. And we were supposed to know that how? The doctor's office said we could just reschedule our chemotherapy for 11:00 am, but what they didn't understand is that the infusion center had a full schedule and the 11:00 am appointments were filled, as were the noon appointments now. Then they actually suggested that E. could begin chemotherapy on a different day then. Since a visit to the doctor's office was clearly a necessity, we dashed across town to meet with Dr. B. (This is not the first time we've had major miscommunication or total lack of communication from this office and both E. and I were ready to "voice" our concerns.)
Dr. B. met with us and offered obligatory apologies. He listened to E.'s heart, pounded on his back and chest a few times and declared him ready to begin chemotherapy. We had to see the doctor for THAT?!? He assured us that things would be smooth sailing from here on out. He explained the process to get the 5-FU pump through the home health service today (even though we were supposed to have received this information last week and I made no less than four phone calls seeking this information, only to be told each time that someone would be calling us back). He shipped us out the door and once again assured us that the orders would be faxed to the infusion center and would be waiting for our arrival.
Ha! We drove quicker than the fax. Still no orders. Several calls from the infusion nurses and 45 minutes later, the faxed orders finally arrived. The orders then had to be sent to the in-house pharmacy so that the IV bags could be prepared. Our ray of sunshine in this very cloudy day was "Tami S." . . . the awesome infusion nurse who worked her butt off for us and made sure everything in her control went off without a hitch. Unfortunately, she also had to be the bearer of bad news. Remember how we were told that the Cisplatin chemotherapy would take about 3 hours? Wrong again. She informed us that it would be a minimum of six hours. SIX hours! First, E. would receive approximately 2 hours of pre-hydration fluid (since chemotherapy is extremely hard on the kidneys, proper hydration is extremely important). That would be followed by about 45 minutes of "pre-meds" (steroids and nausea medication) and then he would receive the actual chemotherapy of Cisplatin for about an hour and a half. Finally, he would receive another 2 hours of post-hydration fluid. Yikes. Obviously, the perfectly timed out schedule was once again in shambles.
Thanks to the quick thinking of Angel Nurse Tami, E. received his 2 hours of pre-hydration fluid and then she quickly sent us to the other building for his radiation (we also received E.'s schedule for radiation . . . every morning, Monday through Friday, until April 10th . . . a total of 28 radiation treatments). As soon as we returned, the IV's were resumed and he was able to receive the rest of his treatment. E. watched a little tv, I worked on thank you notes and we played many, many hands of cards. The home health service arrived at about 6:00 pm and brought the pump and accessories. We received the necessary instructions and when he was eventually done with his Cisplatin, the 5-FU pump was then connected. I think it was well after 7:00 pm by the time we finally left the hospital.
E. said he was hungry for chicken pot pie and I knew we couldn't miss the opportunity to get some food into him when he essentially had an appetite. So, off to Marie Callendar's we went. And he actually ate! He even followed it up with part of a slice of sugar-free Razzleberry pie! A trip to the pharmacy yielded four prescriptions for anti-nausea medications and we finally got home about 9:30 pm. I'm sorry I didn't update everyone last night, but we were both wiped out. E. was in good spirits all day and had a great attitude (once we got things rolling, that is).
He didn't sleep great, but the PICC line, IV and 5-FU pump make things a little uncomfortable for him. He's a side sleeper, but has had to resort to sleeping on his back, which he definitely doesn't like. Hydration remains super important and he is attempting to drink as much as he can. Of course, this means lots of trips to the bathroom . . . day and night. He awoke this morning and said he felt okay, but a "little nauseous." We ran into town for his daily radiation treatment (we were in and out, and he was completed radiated in 15 to 20 minutes . . . I kid you not). Since then, he has spent the day dozing for the most part. He opens his eyes to watch a few minutes of tv but is asleep again in mere moments. He undoubtedly needs all the rest he can get.
So, if any of you are still confused about the treatment protocol (which, keep in mind, can change at any given moment), here's how it will work . . .
* Cisplatin . . . LONG chemotherapy/infusion days . . . Day #1 (March 4th) and Day #29 (April 1st)
* 5-FU . . . 24 hour drip via pump . . . Days #1-#5 (March 4th-March 8th) and Days #29-#33 (April 1st-April 5th)
* Radiation . . . quick 15-20 minute morning appointments . . . daily, Monday through Friday, until April 10th (a total of 28 radiation treatments)
Oh, and we finally did speak to an oncologist at UCDavis. He indicated that this treatment regimen was the traditional treatment for esophageal cancer, although UCDavis typically uses something different now (based on their own research). He recommended that we continue with the treatment as planned since it has already begun. He would also confer with a surgeon at UCDavis and review E.'s case with him . . . to see if the surgeon has any further recommendations about possible surgery, in the near or distant future.
Many, many thanks for the blog comments, texts, phone calls, e-mails, prayers, thoughts and warm wishes. As stoic as E. sometimes seems, I know it touches his heart as it does mine. And as for the help with the boys (babysitting, transporting, etc.) and the delicious meals . . . thank you doesn't seem like enough. The kindess of family, friends, and complete strangers continues to amaze me.
S.
Tuesday, March 3, 2009
PICC line
First tattooed and now PICCed.
As previously mentioned, a PICC line is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then slid into the vein until the tip sits in a large vein just above the heart. At the end of the tube outside the body there is a special cap, to which a drip line or syringe can be attached. Sometimes there is a clamp to keep the tube closed when it is not in use.
The tube is threaded through the vein, up around the shoulder until the end is near to the heart.
The end of the tube usually comes out just below the bend of the elbow , but in E.'s case, higher up on the bicep.
The PICC line can be used to give treatments such as chemotherapy, antibiotics and intravenous fluids and feeding. It can also be used to take samples of blood for testing. You can go home with the PICC in and it can be left in for weeks or months. This makes it possible for you to have your treatment without having to have needles frequently inserted into your veins. (PICC info from www.macmillan.org)
.
.
.
Tattoos? Check.
PICC? Check.
.
.
.
Time to kick some ass.
S.
Monday, March 2, 2009
Tattooed
Earl officially received his first tattoo today. The tattoo process didn't quite have the appearance of a professional tattoo artist in a tattoo parlor, but rather a more primitive look of a convict in a prison yard. No fancy tattoo tools here . . . just a bottle of ink and a needle. And while he did get 3 dots, they weren't exactly in the infamous "Mi Vida Loca"/"My Crazy Life" style . . . one dot is on his right side, one dot is on his left side and one dot is in the middle of his chest.
He is now ready for radiation.
He is now ready for radiation.
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