When Miles leaves the facility after surgery or chemotherapy, he recalibrates and sets out. During those transitions we are lightened and freefall back into life's reasonable stuff. Before long, we're into homework and football games and plenty of carousing. We are present with these things and relish the distraction from active treatment and recovery.
So, that must explain the dearth of blogging--vacation from osteosarcoma travails. Besides, you have all been busy anyway--not just with your own jobs and families and plans, but lending time, talk, labor, love, and funds.
This movement to share with Miles, The Jimmy Fund, and so forth, is a humbling show, and takes our voice away. Thank you. Your generosity is life reaffirming. We are lucky to have you during this engagement, and always. Here are some new pics of people walking miles for Miles. If you have more shots, send them our way!
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Medically speaking, here's the deal:
Miles had his second lung surgery yesterday--a left sided thoracotomy to remove a few remaining suspects. All out--three. No complications. Tweaking pain control regimen as necessary.
Miles is alert and sharp since shedding the anesthesia yesterday afternoon. He's working on deep breaths to support his lungs and ribcage. He is planning on being up in a chair this afternoon, and home by Saturday. Meanwhile, he is reconnecting with his Children's Hospital peeps and brightening the lives of some new ones.
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Up Next:
Mike is finishing Miles' leg!
Tuesday, September 29, 2015
Sunday, August 23, 2015
Radio, Chair, and The Week in Pictures
Sunday, August 23
Post-op Day 2
If you missed Miles' radio interview on WEEI's Dale & Holley Show, here's the link:
http://media.weei.com/a/108421025/d-h-miles-goldberg-12-madbury-nh-with-his-parents-matt-and-jen-and-brother-louis.htm
The patient:
More mobile from the get-go this morning. Quick to sit up and plan the day.
After breakfast, he washed up and scooted from bed to chair for the first time.
Pain well controlled. This afternoon, the surgical team will turn off the suction in Miles' chest tube, and see how things hold. If all looks good, he'll have it pulled out at the bedside tomorrow morning.
Post-op Day 2
If you missed Miles' radio interview on WEEI's Dale & Holley Show, here's the link:
http://media.weei.com/a/108421025/d-h-miles-goldberg-12-madbury-nh-with-his-parents-matt-and-jen-and-brother-louis.htm
The patient:
More mobile from the get-go this morning. Quick to sit up and plan the day.
After breakfast, he washed up and scooted from bed to chair for the first time.
Pain well controlled. This afternoon, the surgical team will turn off the suction in Miles' chest tube, and see how things hold. If all looks good, he'll have it pulled out at the bedside tomorrow morning.
Saturday, August 22, 2015
Chapter 6
August 22
Saturday morning, post-op day 1:
Situation Excellent! Miles is comfortable and chatty.
Miles' operation went as well as possible. Dr. Weldon inspected Miles' entire right lung, and identified five nodules to remove. All were evicted and escorted to pathology. Miles only lost an estimated 3% of his right lung volume. He says his pain never got above a "two" overnight--the epidural pain catheter in his upper back is working very well. A number of wires and tubes dip and rise from his bed, but not as many as with the rotationplasty. The chest tube is expected to be pulled after 2-3 days. Meanwhile, Miles is practicing deep breaths, working to expand his temporarily traumatized rib cage.
Breakfast is on the way. "Miles Strong" photo collage on the door. His favorite nurse, Vanya, is on the case. Great view of Boston from the tenth floor.
More later.
Tuesday, August 18, 2015
Summer Sessions
August 18
Miles continues to amaze. His chemotherapy is double-edged: challenging, in that he is relegated to six-day stretches of IV meds and hydration; but bearable, because of the longish stretches in between treatments, and fewer side effects on the new regimen--mostly intermittent fatigue. Miles has approached his new normal with grace and positive energy. He has enjoyed long summer days with friends and family: swimming, cheering on his friends at the baseball field, tackling his new role as football coach (many thanks to Coach Burd and the ORYA football family), catching some movies, and even finding some room for reading. He is poised to start seventh grade in just a few weeks.
The stretch ahead: between now and school, he will accomplish much.
This Wednesday: Miles is on-the-air! (see below).
This Thursday: he meets his prosthetist to be fitted for his first prosthetic leg. This is so exciting for us. This is progress. Since leg designs will have to accommodate Miles' plans for baseball, football, snowboarding, hockey, and yes, surfing, the prosthetist will have his work cut out for him, so to speak. More on that later.
This Friday: Miles checks back into the surgical unit at Children's Hospital for the first of two open thoracotomies (lung surgeries) to address the suspected metastatic disease on his lungs. Friday, Dr. Weldon addresses his right lung in a procedure expected to take four to six hours. He'll explore every centimeter, excising any suspicious spots. Miles will be in the hospital for the better part of next week. We will be sure to update everyone on his progress.
Miles hopes to attend the first day of school with his classmates on September 2, before returning to Dana-Farber for chemotherapy the very next day. We expect the second thoracotomy later this fall.
Miles recognizes this is a long process, but he has chosen patience and positivity as mantras, and his family and friends are following his lead.
Through this marathon, many people have asked if Miles plans to become a physician someday. While he is seriously considering that career path, he is taking a page from mom’s professional playbook in the meantime, having a go at fundraising for Dana-Farber during this week's Jimmy Fund Telethon:
Miles has
agreed to share his story on WEEI's Dale & Holley program, this Wednesday,
August 19, during the 2 o'clock hour. Please tune in if you can.
You can catch the interview on 93.7 FM in the Boston area, or streaming
live at www.weei.com
He'll be at Fenway Park all day Wednesday, starting with the interview, and sticking around for the Red Sox game that evening.
For more information on how the Jimmy Fund supports cancer patients and their families, please visit www.jimmyfund.org
Sunday, August 2, 2015
Chapter 5
August 2
Miles is good on crutches. Fast bugger. Developing crutch parkour. So there's really no moping about mobility, even when he's on the IV leash. Miles might say the hardest part is having to pee so frequently for six days straight, day and night.
That's his new chemotherapy regimen: a six-hour infusion daily for 5 days in a row with continuous IV fluids. Each cycle is three weeks apart. He's toward the end of cycle two now.
Here's the logistical deal:
Meanwhile, he's definitely getting stronger, eating lots, and gaining some weight. He's still mentally sharp. He visited the one-day "Get Live" Football Camp, where brother Louis was ripping it up last Sunday, and got to chill for a while with Devin McCourty, who was helping out for the day.
Mark your calendars for Wednesday August 19. Miles was invited to participate in the Jimmy Fund Telethon that day. We suspect a charming interview, which might be broadcast during the Red Sox game that follows! Stay tuned for more info on that one.
This all came about after WEEI Radio Hosts "Dale and Holley" visited the Jimmy Fund Clinic a few weeks ago and happened upon Miles. They spent some time chatting and recording. They were touched enough by his story to speak about him on air that afternoon: Miles got a great shout out.
Big thanks to the Ronald McDonald House of Boston, who hosted us with great accommodations these last five days. Louis enjoyed his trip down too, and got to attend the Red Sox win over the Rays Friday night with Dad, thanks to Mom's gift of great seats.
Miles is good on crutches. Fast bugger. Developing crutch parkour. So there's really no moping about mobility, even when he's on the IV leash. Miles might say the hardest part is having to pee so frequently for six days straight, day and night.
That's his new chemotherapy regimen: a six-hour infusion daily for 5 days in a row with continuous IV fluids. Each cycle is three weeks apart. He's toward the end of cycle two now.
Here's the logistical deal:
- Six weeks since surgery: healing very well. No real pain. A little hypersensitive to the touch. Practicing joint motion.
- Round one of chemotherapy not as effective as hoped: leg mass grew and a couple tiny spots appeared in lungs. So meds changed: now solely Etopiside and Ifosfamide, which he's tolerating very well, with hardly any nausea. Does make him tired.
- Imaging in a couple weeks. Then meet with thoracic surgeon.
- Surgery to get lung spots, end of August. May do as two separate procedures.
- Several more rounds of chemo, likely till early November.
Meanwhile, he's definitely getting stronger, eating lots, and gaining some weight. He's still mentally sharp. He visited the one-day "Get Live" Football Camp, where brother Louis was ripping it up last Sunday, and got to chill for a while with Devin McCourty, who was helping out for the day.
Mark your calendars for Wednesday August 19. Miles was invited to participate in the Jimmy Fund Telethon that day. We suspect a charming interview, which might be broadcast during the Red Sox game that follows! Stay tuned for more info on that one.
This all came about after WEEI Radio Hosts "Dale and Holley" visited the Jimmy Fund Clinic a few weeks ago and happened upon Miles. They spent some time chatting and recording. They were touched enough by his story to speak about him on air that afternoon: Miles got a great shout out.
Big thanks to the Ronald McDonald House of Boston, who hosted us with great accommodations these last five days. Louis enjoyed his trip down too, and got to attend the Red Sox win over the Rays Friday night with Dad, thanks to Mom's gift of great seats.
Thursday, June 25, 2015
Heading Home
Miles is leaving the hospital today, a day ahead of schedule, six days after his rotationplasty.
He is getting around well on crutches, and has a wheelchair for longer jaunts.
He's got his PT regimen down well. Pain-free. Great appetite.
At the time of this post, we are leaving room 10212.
Amazing staff. Unique life-affirming experience. Onward.
He is getting around well on crutches, and has a wheelchair for longer jaunts.
He's got his PT regimen down well. Pain-free. Great appetite.
At the time of this post, we are leaving room 10212.
Amazing staff. Unique life-affirming experience. Onward.
Sunday, June 21, 2015
Chapter 4
[see June 20th morning post if you missed it...]
Miles has a plan, and he's sticking to it. Post-op day one was not like waking from a dream--he's having a full in-body experience. In control, negotiating the turns, adapting.
Biding his time through cycles one and two of chemotherapy, Miles rarely complained. He feels the difficulty, and when it escalates he will let you in to understand it if you listen. Miles is learning control and presence. He is teaching the same. We are thankful.
--------------------------------------------------------
Miles had a rotationplasty.
Why? Because it eliminates the primary tumor, stands up well to athletic activity, allows neuromuscular control over the joint, and has a relatively low rate of complications and revisions.
What is it? If you want a visual and realize the images can be shocking at first, click on the "rotationplasty" link above. Otherwise, understand it is 'a limb-sparing medical procedure performed when a patient's leg is amputated at the knee. The ankle joint is then rotated 180 degrees and is attached to the femur, becoming a new knee joint. This allows patients to have two fully functional feet, as opposed to losing one leg completely to amputation' [Wikipedia].
So, Miles' right foot & ankle have moved North. But it's his to keep. He feels it; he moves it. And it's got a new job to do: be a knee. Confused? Miles doesn't seem to be. We dare say this aligns with Miles' uniqueness. In fact, keeping pace with his positivity, we are comfortable identifying the "silver linings" in this new storm cloud. Above all is the emergence of Miles' pragmatism and strength. Along side are the fantastic conversations and bonds he is forging, both directly and among his family, friends, peers, and medical staff. What an opportunity as a parent to get to know Miles. A challenge like this squeezes out deep humors...serious, philosophical, heart-warming, thought provoking, funny, charming, articulate, and confident. This is an opportunity to learn and bond. We're seizing it.
-------------------------------------------------------
Now a salute to you. And you know who you are! You are mentors, family, friends, teammates, classmates, and colleagues. You are cooks who deliver us meals, parents who assist and transport our children, pals who pick up those items we overlooked, confidants who let us vent, dear ones who lift us with your words, professionals who promote awareness and raise funds, baseballers who shave heads, coworkers who paint toes, friends who send entertainment, and even a nine-year-old who unabashedly sells countless customized candies whatever it takes because supporting his bud Miles is elementary (#KeaneSweisz)!
Sincere thanks.
Miles has a plan, and he's sticking to it. Post-op day one was not like waking from a dream--he's having a full in-body experience. In control, negotiating the turns, adapting.
Biding his time through cycles one and two of chemotherapy, Miles rarely complained. He feels the difficulty, and when it escalates he will let you in to understand it if you listen. Miles is learning control and presence. He is teaching the same. We are thankful.
--------------------------------------------------------
Miles had a rotationplasty.
Why? Because it eliminates the primary tumor, stands up well to athletic activity, allows neuromuscular control over the joint, and has a relatively low rate of complications and revisions.
What is it? If you want a visual and realize the images can be shocking at first, click on the "rotationplasty" link above. Otherwise, understand it is 'a limb-sparing medical procedure performed when a patient's leg is amputated at the knee. The ankle joint is then rotated 180 degrees and is attached to the femur, becoming a new knee joint. This allows patients to have two fully functional feet, as opposed to losing one leg completely to amputation' [Wikipedia].
So, Miles' right foot & ankle have moved North. But it's his to keep. He feels it; he moves it. And it's got a new job to do: be a knee. Confused? Miles doesn't seem to be. We dare say this aligns with Miles' uniqueness. In fact, keeping pace with his positivity, we are comfortable identifying the "silver linings" in this new storm cloud. Above all is the emergence of Miles' pragmatism and strength. Along side are the fantastic conversations and bonds he is forging, both directly and among his family, friends, peers, and medical staff. What an opportunity as a parent to get to know Miles. A challenge like this squeezes out deep humors...serious, philosophical, heart-warming, thought provoking, funny, charming, articulate, and confident. This is an opportunity to learn and bond. We're seizing it.
-------------------------------------------------------
Now a salute to you. And you know who you are! You are mentors, family, friends, teammates, classmates, and colleagues. You are cooks who deliver us meals, parents who assist and transport our children, pals who pick up those items we overlooked, confidants who let us vent, dear ones who lift us with your words, professionals who promote awareness and raise funds, baseballers who shave heads, coworkers who paint toes, friends who send entertainment, and even a nine-year-old who unabashedly sells countless customized candies whatever it takes because supporting his bud Miles is elementary (#KeaneSweisz)!
Sincere thanks.
Saturday, June 20, 2015
Leg Up
Miles is awake, alert, and engaged after successful surgery! Mom and Dad could not be prouder.
Brief update this morning, with much more to follow:
Miles went under anesthesia yesterday (Friday) morning around 8:00am.
His Surgeon, Dr. Anderson, successfully freed up the vital nerve and artery by 2:00pm. After brief conference with Mom and Dad, she went back to work, and completed the rotationplasty. Miles made it to recovery by 5:30, and eventually up to a spacious tenth floor room around 10:00pm.
His pain is controlled and his quips are plenty. Drinking water, chomping ice.
Mom and Dad are very relieved, and dripping thanks to you family and friends who have graciously given so much to ease this process
Brief update this morning, with much more to follow:
Miles went under anesthesia yesterday (Friday) morning around 8:00am.
His Surgeon, Dr. Anderson, successfully freed up the vital nerve and artery by 2:00pm. After brief conference with Mom and Dad, she went back to work, and completed the rotationplasty. Miles made it to recovery by 5:30, and eventually up to a spacious tenth floor room around 10:00pm.
His pain is controlled and his quips are plenty. Drinking water, chomping ice.
Mom and Dad are very relieved, and dripping thanks to you family and friends who have graciously given so much to ease this process
 |
| Pink Piggies |
Friday, May 15, 2015
Knee Deep
May 15.
Miles started his second five-week chemotherapy cycle yesterday--a planned 48 hour stint at Children's Hospital. He's moving through it with a sense of style and experience. As usual, he is charming the staff. There are a lot of smiles, and a sense of appreciation for each other as new paths cross. His leg pain is well controlled and his nausea is minimal. If you are taking his food order though, be ready to switch on-the-fly, because peach yogurt can turn into filet-o-fish can turn into strawberries can turn into Szechuan beef very quickly.
Miles is doing his best to mix things up, despite the gravity of his bed and IV pump. His goals:
Miles started his second five-week chemotherapy cycle yesterday--a planned 48 hour stint at Children's Hospital. He's moving through it with a sense of style and experience. As usual, he is charming the staff. There are a lot of smiles, and a sense of appreciation for each other as new paths cross. His leg pain is well controlled and his nausea is minimal. If you are taking his food order though, be ready to switch on-the-fly, because peach yogurt can turn into filet-o-fish can turn into strawberries can turn into Szechuan beef very quickly.
Miles is doing his best to mix things up, despite the gravity of his bed and IV pump. His goals:
No TV recently, but plenty of chit-chat and a streak of Master Chef episodes on his iPhone.
Ginger ale is typically his beverage of choice. Water and hot tea follow. He is responsible about keeping room items in order, since space constraints can turn bathrooming into a steeplechase. You might expect a lot of complaining throughout this confining, fatiguing, poisonous ordeal, but it's rare. Miles is agreeable (sometimes with bargaining) nearly all the time to reminders and suggestions. Occasionally, he crescendos "wait wait wait," or "no no no," or "what are you thinking!" but you can see him downshift from Hulk to David Banner within seconds. He is working hard, and stopping to smell flowers along the way.
-----------------------------
So, opening day for Oyster River baseball. Where to begin. Overwhelming appreciation for the community's support of Miles and family. Pete, Mike, Butch, ORHS, parents, family and friends: thank you. Creative, heartfelt, well-spoken, generous, and uniting. Miles will always remember the how the scene of 2015's first pitch boosted him through the game of his life.
------------------------------
Next topic: Rotationplasty
Friday, May 1, 2015
Chapter 3
May 1st -- one month in.
Life is different. We are forced to think in new ways about familiar and unfamiliar happenings. Sometimes this is difficult. Sometimes it is strangely fun. It is true that big challenges flush out hidden talents, ideas, and emotions. Being with Miles has always been fun and thought-provoking. But he's pulled out some pretty slick concepts lately. A lot of you have remarked how resilient kids are to adversity, compared to adults. True that.
And just when you think the positivity and lack of wallow equate to denial, the earnest vulnerable boy comes out. So, I think Miles has balance. He will need it, literally and figuratively.
--------------------------------------------------
Miles had two-and-a-half weeks between chemotherapy treatments, regaining his spunk.
He's completed plenty of schoolwork, hung out with friends, visited with family, been to baseball practice, battled it out with Louis (totally unfair, considering the crutches), went to a Red Sox game with Mom and brother, and has generally just been doing his thing.
As the typical treatment scheme for osteosarcoma is Chemo--Surgery--Chemo, we met with the surgical team last Thursday to discuss options. A heaviness accompanied us to this monumental day. The choices are clear, and we are leaning toward a repair that both eliminates the primary tumor and allows a solid return to athletics. Miles has been talking about it. He says if he could skip the chemo, and just get on with the surgery and rehab, he would. We know though, that "cure" is paramount, and this requires a parade of systemic medicines scavenging the far corners of his insides to eliminate stray cancer cells. So, on we march.
--------------------------------------------------
This is week 4 of treatment--inpatient IV methotrexate and two-to-three days of IV fluid flush. This began yesterday, so we anticipate being home Sunday. This same treatment is slated for next week, but Miles is planning to do the IV hydration part (two-to-three days) at home, with a backpack-based pump. A welcome set-up, we think.
Miles' blood counts have held strong--no anemia, platelets good--and his intermittent nausea and pain are controlled with medication adjustments.
We learned from Dr. Rodriguez-Galindo (Miles' primary oncologist) that Manny Pacquiao (boxing Floyd Mayweather tomorrow night) has a foundation that serves children in his home country of The Philippines--scholarships, clothing, etc. The topic came up, as Miles is considering streaming the fight tomorrow night. Not typically a primary interest of his, but hey, we'll exploit any applicable metaphor these days.
Life is different. We are forced to think in new ways about familiar and unfamiliar happenings. Sometimes this is difficult. Sometimes it is strangely fun. It is true that big challenges flush out hidden talents, ideas, and emotions. Being with Miles has always been fun and thought-provoking. But he's pulled out some pretty slick concepts lately. A lot of you have remarked how resilient kids are to adversity, compared to adults. True that.
And just when you think the positivity and lack of wallow equate to denial, the earnest vulnerable boy comes out. So, I think Miles has balance. He will need it, literally and figuratively.
--------------------------------------------------
Miles had two-and-a-half weeks between chemotherapy treatments, regaining his spunk.
He's completed plenty of schoolwork, hung out with friends, visited with family, been to baseball practice, battled it out with Louis (totally unfair, considering the crutches), went to a Red Sox game with Mom and brother, and has generally just been doing his thing.
As the typical treatment scheme for osteosarcoma is Chemo--Surgery--Chemo, we met with the surgical team last Thursday to discuss options. A heaviness accompanied us to this monumental day. The choices are clear, and we are leaning toward a repair that both eliminates the primary tumor and allows a solid return to athletics. Miles has been talking about it. He says if he could skip the chemo, and just get on with the surgery and rehab, he would. We know though, that "cure" is paramount, and this requires a parade of systemic medicines scavenging the far corners of his insides to eliminate stray cancer cells. So, on we march.
--------------------------------------------------
This is week 4 of treatment--inpatient IV methotrexate and two-to-three days of IV fluid flush. This began yesterday, so we anticipate being home Sunday. This same treatment is slated for next week, but Miles is planning to do the IV hydration part (two-to-three days) at home, with a backpack-based pump. A welcome set-up, we think.
Miles' blood counts have held strong--no anemia, platelets good--and his intermittent nausea and pain are controlled with medication adjustments.
We learned from Dr. Rodriguez-Galindo (Miles' primary oncologist) that Manny Pacquiao (boxing Floyd Mayweather tomorrow night) has a foundation that serves children in his home country of The Philippines--scholarships, clothing, etc. The topic came up, as Miles is considering streaming the fight tomorrow night. Not typically a primary interest of his, but hey, we'll exploit any applicable metaphor these days.
Saturday, April 18, 2015
Back to School
Miles made it home late last Saturday night, but not before methodically consuming that Big Mac and its little fry friends.
The next couple days were sedate, but low on nausea, both thanks to some very effective medication. Miles says he was very happy to be back at school (couple hours Monday, half a day on Tuesday, and all day Friday), reconnecting with his friends and teachers.
Wednesday, he joined his Phillies buds at baseball practice. Coach Butch has welcomed him to attend practices and games whenever he can. We look forward to him motivating his team in new ways this year, since he won't be staring down pitchers from the left side of the plate.
Hair (he still has it): see pic
------------------------------------
Thursday was Clinic Day at Dana Farber. Blood counts are holding well, and treatment remains on schedule. Miles' tank got topped off with a bag of IV saline, and we backed off on the nausea meds...the kid's darn perky now!
So week 3 of cycle 1 is coming up. No planned chemotherapy this week--we expect that down at Children's Hospital for a few days each of weeks 4 and 5. Meanwhile, Miles is going with the flow. He and his parents want to thank you all for your encouragement, camaraderie, and assistance with this experience. It means everything.
The next couple days were sedate, but low on nausea, both thanks to some very effective medication. Miles says he was very happy to be back at school (couple hours Monday, half a day on Tuesday, and all day Friday), reconnecting with his friends and teachers.
Wednesday, he joined his Phillies buds at baseball practice. Coach Butch has welcomed him to attend practices and games whenever he can. We look forward to him motivating his team in new ways this year, since he won't be staring down pitchers from the left side of the plate.
Hair (he still has it): see pic
------------------------------------
Thursday was Clinic Day at Dana Farber. Blood counts are holding well, and treatment remains on schedule. Miles' tank got topped off with a bag of IV saline, and we backed off on the nausea meds...the kid's darn perky now!
So week 3 of cycle 1 is coming up. No planned chemotherapy this week--we expect that down at Children's Hospital for a few days each of weeks 4 and 5. Meanwhile, Miles is going with the flow. He and his parents want to thank you all for your encouragement, camaraderie, and assistance with this experience. It means everything.
Saturday, April 11, 2015
Discharge Day (with a little luck)
Miles is ready to head home after three days at Boston Children's Hospital.
He's taken in two courses of chemotherapy and peed enough to fill up a kiddie pool.
Medications in hand, port in place, IV fluids disconnected, and he is excited for a Big Mac on the way home.
------------------------------
Had a few nice visitors in the last couple days, including from Coach Pete who surprised him, and brought a nice surprise Miles may tell you about. Thanks Pete!
------------------------------
More tomorrow.
He's taken in two courses of chemotherapy and peed enough to fill up a kiddie pool.
Medications in hand, port in place, IV fluids disconnected, and he is excited for a Big Mac on the way home.
------------------------------
Had a few nice visitors in the last couple days, including from Coach Pete who surprised him, and brought a nice surprise Miles may tell you about. Thanks Pete!
------------------------------
More tomorrow.
Friday, April 10, 2015
Chapter 2
Much movement in the last three days.
First: the voluminous outpouring of supportive communications and deeds from friends and family. We are all touched and lifted by your help.
Miles really appreciates all the texts and postings. Please know that if his response is delayed, he is simply taking a healthy rest. So feel free to text again, and he will get back to you!
Second: Inpatient activity.
Miles had his port-a-cath placed Wednesday. This makes blood draws and med/fluid infusions much easier for him (less needles and peripheral IVs).
After some additional baseline testing Thursday morning, he received plenty of pre-treatment fluid hydration. Chemotherapy started a little past schedule, around 10pm Thursday night. Overall, he slept well (and he doesn't remember his one strange period of loopiness). He felt sick for the first time this morning. The oncology team has fine-tuned his anti-nausea medication, and he is resting now, feeling modestly better.
--------------------------------------------
Next:
Friday brings more IV hydration, followed by a repeat of the same 2 chemotherapy agents he got last night (adriamycin and cisplatin). These end overnight, and will be followed by more IV hydration. The biggest side effect at this stage is nausea, so the team is focusing extra effort there.
If the current plan sticks, Miles will return home sometime tomorrow (Saturday).
The visiting nurse will be out in the next couple of days to assess the handsome patient, administer some additional medication, and possibly draw some blood. He has an outpatient clinic visit at the Jimmy Fund Clinic (Dana Farber) Thursday with his medical oncology team.
--------------------------------------------
More stuff:
Louis is in the house! Came to visit for the day Friday. A little hesitant at first, but now doesn't want to leave...we're sure it's in part to be with big brother, and not just all the cool stuff to do.
BTW, this warrants a shout out to Louis' bud Soren, who not long ago logged some extended time at Children's Hospital beating down Lymphoma! Louis learned a lot from that experience, and we're thinking that experience will help him approach Miles' challenge with a leg up. Thanks Coopers! We love you.
First: the voluminous outpouring of supportive communications and deeds from friends and family. We are all touched and lifted by your help.
Miles really appreciates all the texts and postings. Please know that if his response is delayed, he is simply taking a healthy rest. So feel free to text again, and he will get back to you!
Second: Inpatient activity.
Miles had his port-a-cath placed Wednesday. This makes blood draws and med/fluid infusions much easier for him (less needles and peripheral IVs).
After some additional baseline testing Thursday morning, he received plenty of pre-treatment fluid hydration. Chemotherapy started a little past schedule, around 10pm Thursday night. Overall, he slept well (and he doesn't remember his one strange period of loopiness). He felt sick for the first time this morning. The oncology team has fine-tuned his anti-nausea medication, and he is resting now, feeling modestly better.
--------------------------------------------
Next:
Friday brings more IV hydration, followed by a repeat of the same 2 chemotherapy agents he got last night (adriamycin and cisplatin). These end overnight, and will be followed by more IV hydration. The biggest side effect at this stage is nausea, so the team is focusing extra effort there.
If the current plan sticks, Miles will return home sometime tomorrow (Saturday).
The visiting nurse will be out in the next couple of days to assess the handsome patient, administer some additional medication, and possibly draw some blood. He has an outpatient clinic visit at the Jimmy Fund Clinic (Dana Farber) Thursday with his medical oncology team.
--------------------------------------------
More stuff:
Louis is in the house! Came to visit for the day Friday. A little hesitant at first, but now doesn't want to leave...we're sure it's in part to be with big brother, and not just all the cool stuff to do.
BTW, this warrants a shout out to Louis' bud Soren, who not long ago logged some extended time at Children's Hospital beating down Lymphoma! Louis learned a lot from that experience, and we're thinking that experience will help him approach Miles' challenge with a leg up. Thanks Coopers! We love you.
Tuesday, April 7, 2015
Miles' friend Alden suspected an April Fools joke when he got Miles' text April 1.
But it is true: that day an x-ray of his right knee revealed an unexpected bone tumor.
Thanks to the caring and dedication of Dr. Webb and the team at Boston Children's Hospital, the workup quickly ensued. Here's the data synopsis:
MRI: malignant appearing tumor in upper shin
CT Chest: no sign of spread to lungs
Bone Scan: no sign of spread to other bones
Labs: just fine so far
Biopsy: confirms Osteosarcoma
---------------------------------------
This is bone cancer--not common--and it tends to spread.
Minor victories, which we will cheer: lungs and other bones look clear, which means no detectable dissemination. This improves the prognosis, and as his oncology team said Monday:
"We are going to treat for cure."
Treatment plan: ten weeks of chemotherapy, followed by surgery to remove all tumor at the site, followed by four-to-five months of more chemotherapy.
We have confidence in his medical team. The coordination and positivity of the Children's Hospital staff has been exemplary.
---------------------------------------
Miles has been amazingly and inspiringly positive. He is expected to be hospitalized for three-to-four days for the first infusion. He will visit with his team at least weekly and undergo additional infusions until his surgery in June.
Miles has mild pain intermittently, which is well managed. He is fully involved with the planning, asks excellent questions, and shows valuable self-empowerment.
He was able to attend school Tuesday this week, and will continue to participate academically as much as possible, both in-person and remotely.
Baseball and Football seasons will be different experiences this year, and Miles is working to stay involved in alternative ways.
We love him so much, and are so proud of his healthy willingness to challenge this threat and make it part of his history.
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To our friends and family who have shared so many kind words and deeds: thank you dearly. We are deeply appreciative to have so much love and good energy around us.
Please share your comments and support. We will keep you updated.
But it is true: that day an x-ray of his right knee revealed an unexpected bone tumor.
Thanks to the caring and dedication of Dr. Webb and the team at Boston Children's Hospital, the workup quickly ensued. Here's the data synopsis:
MRI: malignant appearing tumor in upper shin
CT Chest: no sign of spread to lungs
Bone Scan: no sign of spread to other bones
Labs: just fine so far
Biopsy: confirms Osteosarcoma
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This is bone cancer--not common--and it tends to spread.
Minor victories, which we will cheer: lungs and other bones look clear, which means no detectable dissemination. This improves the prognosis, and as his oncology team said Monday:
"We are going to treat for cure."
Treatment plan: ten weeks of chemotherapy, followed by surgery to remove all tumor at the site, followed by four-to-five months of more chemotherapy.
We have confidence in his medical team. The coordination and positivity of the Children's Hospital staff has been exemplary.
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Miles has been amazingly and inspiringly positive. He is expected to be hospitalized for three-to-four days for the first infusion. He will visit with his team at least weekly and undergo additional infusions until his surgery in June.
Miles has mild pain intermittently, which is well managed. He is fully involved with the planning, asks excellent questions, and shows valuable self-empowerment.
He was able to attend school Tuesday this week, and will continue to participate academically as much as possible, both in-person and remotely.
Baseball and Football seasons will be different experiences this year, and Miles is working to stay involved in alternative ways.
We love him so much, and are so proud of his healthy willingness to challenge this threat and make it part of his history.
--------------------------------------
To our friends and family who have shared so many kind words and deeds: thank you dearly. We are deeply appreciative to have so much love and good energy around us.
Please share your comments and support. We will keep you updated.
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