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.
Saturday, April 18, 2015
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.
--------------------------------------
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
---------------------------------------
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.
--------------------------------------
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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