Happy New Year! I am so sorry to have left everyone hanging in suspense over what happened in the last 36 hours, especially since we have been at home for the past 24. Those of you shoot vacation videos will understand the dilemma: Should I take the shot for others to see what we’ve done, or should I live the moment and share the memory. There is no real option for us, and unfortunately our e-mail server has been down and so the e-mail synopsis has not been as easily distributed. (Lizy puts out a short email with a play-by-play while it is my job to add the color)
An hour after the last post, chemotherapy was restarted, as expected the annoying itchy rash returned, but Evan had been sedated and slept through the rash without any anxiety or itching. And 30 minutes later, the rash resolved itself. Chemo was kept running at 10 ml/hr through the night without incident. Evan woke on Tuesday morning wondering why he was in the hospital and when he could go home, ate a good breakfast and tried to patiently wait for the infusion to be complete. Starting at 9:00 am the dosing was increased 10 ml/hr until 2 pm when it was moved to 60 ml, and then to 100 ml/hr for the last hour of medicine 1.
In preparation for medicine 2 Evan began to develop hives, itching and anxiety again, at the same time as a pre-med was being administered. This was the same medicine which had been hung in premed the other 5 attempts at starting chemo, and the one med which had not been running during the day. Ah Hah! As we have again experienced the same reaction at home this evening when he took the medicine for some nausea onset, we believe that this will lead to a positive change moving forward. The second medication went in without trouble as Evan had been given an ant anxiety medication that sedated him for the evening which only became problematic when we had to move him from car to house when we got home. Today has been quiet and relaxed, a nice surprise of opening up two boxes of games and toys from Kids Wish Network.
We hope to be going to San Diego next week (Assuming blood counts are in line) to visit Legoland thanks to Kids Wish Network. It will mark a great way to start 2009.
A look back on this year is not easy, but upon closer inspection we can find some real nuggets of gold. The type of gold that you can’t buy or sell. The crafting of this gold that takes hours, days and weeks to work into wonders of strength and beauty. This gold is the color of friendships (far and wide) and family (near and distant). This gold is love, its source is Our Father in heaven. It is not all that He is; but it is His medium of choice for us to work in. And His example to model after is stunning, beautiful and timeless. And more important is the fact that all we have to do with this material is to acknowledge its source. His pleasure is in seeing us try, and like a parent watching a child finger paint He enjoys the look on our faces when we smile at doing something ‘pretty’ on our own..
This year we have received the gold of love in abundance, and we hope that through this writing and Evan‘s story; that you might take some of our gold and share it with those around you. And now we wish you many blessings for the coming 12 months, and we’ll be sure to post pictures of LEGO’s in abundance upon our return.
Wednesday, December 31, 2008
Monday, December 29, 2008
A Long Day's Night
Its 9:18 pm, Monday December 29, 2008 and as I write this I am sitting at Evan’s bedside in the Pediatric Intensive Care Unit (PICU) at UNC Hospital. In the past 10 minutes the night nurse and her assistant prepared the room for an overnight code. While this is just precautionary, it indicates in no uncertain terms the fine line between life and death that we are walking when it comes to Evan’s health. Today has been long, challenging and is not yet over.
This is the other shoe dropping. For the past 24 days Evan has lived an almost idyllic first round of chemotherapy. There were some initial side effects; mild nausea and some minor aches and pains to name them. Otherwise he made it to school 9 of 10 days, got his homework done, made it to his Pack Meeting, celebrated Christmas at home, and built LEGOs everyday thanks to some very generous friends and Santa. To top off the last day before his next course of chemotherapy he finished building the computer for his science fair project.
His blood counts dropped as expected and then began their recovery. The only downer was his hair falling out on Christmas Eve. Even that challenge had been lessened by pre-cutting his hair with an electric trimmer, and his friends (Jack, William, and Andy) shaving their heads, and his dad, Den Leader, and Assistant Pack Leader also providing follicle support.
And then there has been today. It started out relatively normal; a little sluggish out of bed, breakfast on the fly, mom and dad slugging coffee on the way to Chapel Hill. We were greeted with good news, while a tape measure is not an overly reliable measuring tool for medical purposes, the tumor has apparently responded well to the first treatment of the chemotherapy protocol. Evan took his premeds like a champ, and his blood values came back as strongly as the first day he had chemo. Then things started to happen out of the ordinary. An unfortunate initial reaction to a premed - vomiting. Then there was a 2nd reaction to his first start of chemo (Evan’s protocol calls for one drug of 572 ml to be administered over 3 hours, and a second over 1 hour. The first drug has been known to cause anaphylactic shock as an immediate side effect and so there is considerable premedication) This second reaction involved hives, vomiting and a very fast heart beat. After stopping infusion and restarting at a lower rate there were 2 additional reactions and the determination that the dosing would have to be much lower slower and that Evan would need to spend the night.
Since that determination, the chemical cocktail has been enhanced with a variety of anti-nauseals, anti-histamines, H2 blockers and anti-anxieties in an effort to start the medications in a manner that will not create a reaction. At the planned rate of infusion for attempt number 5 (it might be 6, I’ve lost count) it will be another 40 hours before the first medication is complete, that is before we get to medication #2. That would put discharge at 2 pm on New Years Eve. Happy New Year!
Thank you for the ongoing blessings of your prayers - Evan and family.
This is the other shoe dropping. For the past 24 days Evan has lived an almost idyllic first round of chemotherapy. There were some initial side effects; mild nausea and some minor aches and pains to name them. Otherwise he made it to school 9 of 10 days, got his homework done, made it to his Pack Meeting, celebrated Christmas at home, and built LEGOs everyday thanks to some very generous friends and Santa. To top off the last day before his next course of chemotherapy he finished building the computer for his science fair project.
His blood counts dropped as expected and then began their recovery. The only downer was his hair falling out on Christmas Eve. Even that challenge had been lessened by pre-cutting his hair with an electric trimmer, and his friends (Jack, William, and Andy) shaving their heads, and his dad, Den Leader, and Assistant Pack Leader also providing follicle support.And then there has been today. It started out relatively normal; a little sluggish out of bed, breakfast on the fly, mom and dad slugging coffee on the way to Chapel Hill. We were greeted with good news, while a tape measure is not an overly reliable measuring tool for medical purposes, the tumor has apparently responded well to the first treatment of the chemotherapy protocol. Evan took his premeds like a champ, and his blood values came back as strongly as the first day he had chemo. Then things started to happen out of the ordinary. An unfortunate initial reaction to a premed - vomiting. Then there was a 2nd reaction to his first start of chemo (Evan’s protocol calls for one drug of 572 ml to be administered over 3 hours, and a second over 1 hour. The first drug has been known to cause anaphylactic shock as an immediate side effect and so there is considerable premedication) This second reaction involved hives, vomiting and a very fast heart beat. After stopping infusion and restarting at a lower rate there were 2 additional reactions and the determination that the dosing would have to be much lower slower and that Evan would need to spend the night.
Since that determination, the chemical cocktail has been enhanced with a variety of anti-nauseals, anti-histamines, H2 blockers and anti-anxieties in an effort to start the medications in a manner that will not create a reaction. At the planned rate of infusion for attempt number 5 (it might be 6, I’ve lost count) it will be another 40 hours before the first medication is complete, that is before we get to medication #2. That would put discharge at 2 pm on New Years Eve. Happy New Year!
Thank you for the ongoing blessings of your prayers - Evan and family.
Monday, December 8, 2008
Hey, is the car cold or is it just me?
Over the past year this blog has chronicled the life of Evan Coleman as he has undertaken a battle with cancer. He is a bright (full of life and intelligent) young man with more courage in his little body than seems possible for his size. What has transpired over the past week and is ongoing as this is written might be termed the ’Transition’ from investigation to action. While surgeries before have had the stated objective of ending this war, no attempt has encompassed such a broad and sweeping attack, nor has his life been in more jeopardy than it is over the next couple of weeks. This entry has the potential to get away from a simple and clear explanation; and instead end up as a tiring emotional discourse. This unfortunately might best reflect the emotional and physical state of the Coleman home as it exists today. But instead we have assembled multiple perspectives to share clinical facts and raw emotions from both Evan and his parents.
THE CLINICAL:
On Monday 12-1-08, a one hour operation resulted in a port-a-cath central line being placed for easy chemotherapy administration and blood draws. The operation was successful and without complication or issue. Chemotherapy had been slated to begin Monday 12-1, then moved to Wednesday 12-3 and finally to Friday 12-5. The delays were directly related to making sure Evan’s care came first. The chemo cocktail is a rare combination in pediatrics and requires close attention, considerable premedication and access to a ‘crash’ cart (In ~20-30% of patients, there is an anaphylactic reaction requiring immediate emergency medical attention, the crash cart has all the necessary supplies for an emergency resuscitation.) For all the preparation the most anxiety came from the premedication. The high doses of premedication to avoid the worst side effects of the chemotherapy resulted in an anxiety driven case of cramping sensations. This was resolved with Ativan.
4 hours of Taxol and 1 hour of Carboplatin and Evan was on his way home. Heavy doses of anti-nausea medications for 24 hours, coupled with rest and relaxation have Evan back to a relative normal for today (Sunday). Next round of Chemo set for 12-29-08 based on blood counts to be taken 12-15 and 12-22.
EVAN’S PERSPECTIVE:
12-1-08: Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Well at least the nurses are nice, but Mom and Dad seem a little tense. Hey, there are some really cool things in the oper. . . . Dad, is that you? Am I done? And what was this for? What’s chemotherapy? No more IV’s, cool! Mom and Dad need to settle down, aren’t I the patient? Get over yourselves already. Oww! My chest hurts. Ahh. . . Tylenol, Ahh . . . Sleep
12/2/08 Tuesday - Pain, 12/3/08 Wednesday - Discomfort and port awareness, 12/4/08 Thursday - Anxiety, questions and when can they take off this gauze blob on my chest? 12/5/08 Friday. . .
Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Holy Toledo. . .they are going to poison me to kill a disease I don’t understand, what the . . . Are they insane? Nice try at the whole ‘comfort’ thing, Dad, Mom . . . Yeah, you guys go and talk to the doctor. . .Hey, nice lady, what are you doing with that port? Why am I on this bed in a separate room? Aren’t all the other kids walking around? Hey, something is not right. . . Something is really not right. . . Mom! . . . Dad! . . . My legs are cramping and I can’t stretch them out . . . Make it go away. . . DON’T TOUCH ME! . . . Now its in my arms and hands. . . MAKE IT GO AWAY . . . IT HURTS . . . DON’T TOUCH ME. . . . Yawn. . . . Sleeeeeeeep. Hey can I get my computer? Can I get some lunch? California Rolls please. When can we go home? The port access, gauze and nasty tegaderm are gone and I’m outta here.
12/6/08 Saturday - nice and easy, a little blasé, light nausea in the evening.
12/7/08 Sunday - nice breakfast, easy and light on the snacks, internet access and Nickelodeon. A shower - hot and sweet, a little nausea but basically back to . . . Hey my webkinz pets are still alive.
THE PARENTS VIEW:
Monday - Thursday 12-1 to 12-4 : When will this be over? Is this what it felt like for Abraham as he took Isaac up on the mountain? I would rather drink hemlock than have to do this. Where do I look for strength? Can you not cut me a little slack? Whoa! Wait up! A year of walking together, why are we taking separate paths now? Is this when personal interest overwhelms the need to serve others? That was ugly. Let us pray. We’ll need all the strength and connection we can get.
Friday 12-5: Off we go. He’s kinda tough to get up this morning, but maybe that’s best, we’re a little tense. Nice quite ride to the hospital and up to the pediatric oncology clinic. Infusion start in the ‘Code’ room.?.? Possible reaction. . . Dexamethasone . . . . Benadryl . . . Zoll Debibrillator . . . Crash Cart . . . ER Gurney . . . ANXIOUS . . . FEAR . . . EVAN WHAT’S WRONG? PRAY . . . PRAY . . . PRAY . . . ATIVAN . . . PRAY . . . PRAY . . . Sleep . . . Peace . . . Tension easing . . . Evan your back . . . California rolls, you bet . . . Let’s go home.
Saturday 12-6: Taking it easy, working together, friends with food and coffee. Managing nausea and fatigue, his and ours. Quiet movie night, Thanking God for our friends who have kept Morgan active and involved in her activities.
Sunday 12-7: Breakfast, writing, decorating the house, answering computer building questions, math homework, language homework, thinking about school. Reality of low blood counts and decreased immune system in 7 days setting in.
Sunday Evening and Monday Morning 12-7 to 12-8: First clear side effects challenges
To Thank you for your thoughts, prayers and love.
THE CLINICAL:
On Monday 12-1-08, a one hour operation resulted in a port-a-cath central line being placed for easy chemotherapy administration and blood draws. The operation was successful and without complication or issue. Chemotherapy had been slated to begin Monday 12-1, then moved to Wednesday 12-3 and finally to Friday 12-5. The delays were directly related to making sure Evan’s care came first. The chemo cocktail is a rare combination in pediatrics and requires close attention, considerable premedication and access to a ‘crash’ cart (In ~20-30% of patients, there is an anaphylactic reaction requiring immediate emergency medical attention, the crash cart has all the necessary supplies for an emergency resuscitation.) For all the preparation the most anxiety came from the premedication. The high doses of premedication to avoid the worst side effects of the chemotherapy resulted in an anxiety driven case of cramping sensations. This was resolved with Ativan.
4 hours of Taxol and 1 hour of Carboplatin and Evan was on his way home. Heavy doses of anti-nausea medications for 24 hours, coupled with rest and relaxation have Evan back to a relative normal for today (Sunday). Next round of Chemo set for 12-29-08 based on blood counts to be taken 12-15 and 12-22.
EVAN’S PERSPECTIVE:
12-1-08: Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Well at least the nurses are nice, but Mom and Dad seem a little tense. Hey, there are some really cool things in the oper. . . . Dad, is that you? Am I done? And what was this for? What’s chemotherapy? No more IV’s, cool! Mom and Dad need to settle down, aren’t I the patient? Get over yourselves already. Oww! My chest hurts. Ahh. . . Tylenol, Ahh . . . Sleep
12/2/08 Tuesday - Pain, 12/3/08 Wednesday - Discomfort and port awareness, 12/4/08 Thursday - Anxiety, questions and when can they take off this gauze blob on my chest? 12/5/08 Friday. . .
Here we go again. Can I not be allowed to sleep? Do I have to get in the car? Has anyone else realized its COLD in the car? Ahhh Sleep. . . . Uh Oh! The hospital . . . Wait . . . Are there any other options? Holy Toledo. . .they are going to poison me to kill a disease I don’t understand, what the . . . Are they insane? Nice try at the whole ‘comfort’ thing, Dad, Mom . . . Yeah, you guys go and talk to the doctor. . .Hey, nice lady, what are you doing with that port? Why am I on this bed in a separate room? Aren’t all the other kids walking around? Hey, something is not right. . . Something is really not right. . . Mom! . . . Dad! . . . My legs are cramping and I can’t stretch them out . . . Make it go away. . . DON’T TOUCH ME! . . . Now its in my arms and hands. . . MAKE IT GO AWAY . . . IT HURTS . . . DON’T TOUCH ME. . . . Yawn. . . . Sleeeeeeeep. Hey can I get my computer? Can I get some lunch? California Rolls please. When can we go home? The port access, gauze and nasty tegaderm are gone and I’m outta here.
12/6/08 Saturday - nice and easy, a little blasé, light nausea in the evening.
12/7/08 Sunday - nice breakfast, easy and light on the snacks, internet access and Nickelodeon. A shower - hot and sweet, a little nausea but basically back to . . . Hey my webkinz pets are still alive.
THE PARENTS VIEW:
Monday - Thursday 12-1 to 12-4 : When will this be over? Is this what it felt like for Abraham as he took Isaac up on the mountain? I would rather drink hemlock than have to do this. Where do I look for strength? Can you not cut me a little slack? Whoa! Wait up! A year of walking together, why are we taking separate paths now? Is this when personal interest overwhelms the need to serve others? That was ugly. Let us pray. We’ll need all the strength and connection we can get.
Friday 12-5: Off we go. He’s kinda tough to get up this morning, but maybe that’s best, we’re a little tense. Nice quite ride to the hospital and up to the pediatric oncology clinic. Infusion start in the ‘Code’ room.?.? Possible reaction. . . Dexamethasone . . . . Benadryl . . . Zoll Debibrillator . . . Crash Cart . . . ER Gurney . . . ANXIOUS . . . FEAR . . . EVAN WHAT’S WRONG? PRAY . . . PRAY . . . PRAY . . . ATIVAN . . . PRAY . . . PRAY . . . Sleep . . . Peace . . . Tension easing . . . Evan your back . . . California rolls, you bet . . . Let’s go home.
Saturday 12-6: Taking it easy, working together, friends with food and coffee. Managing nausea and fatigue, his and ours. Quiet movie night, Thanking God for our friends who have kept Morgan active and involved in her activities.
Sunday 12-7: Breakfast, writing, decorating the house, answering computer building questions, math homework, language homework, thinking about school. Reality of low blood counts and decreased immune system in 7 days setting in.
Sunday Evening and Monday Morning 12-7 to 12-8: First clear side effects challenges
To Thank you for your thoughts, prayers and love.
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