After quite a rough time, Everett is doing MUCH better. His last fever was Sunday at 7am and since that time he has gotten progressively better. His heart rate has returned to normal. The fluid around his lungs has cleared so he is breathing much better and has been able to go without oxygen support since Monday morning. He has been eating a little bit at each meal so they have discontinued his TPN (iv nutrition) and fluids during the day. And he is allowed to be off the ECG and respiratory monitors during the day as well, so he can be up and about, and has even been to the playroom a few times in the past 2 days.
The doctors continue to be amazed by our little fighter. They expected him to get worse before he got better and seemed genuinely surprised and very happy to see him doing so well so soon. For John and I the 5 days Everett was sick were terrible and scary, and his recovery could not come fast enough, so we are beyond relieved to see him out of bed and smiling again. I'm not sure that either of us could have handled seeing our baby get much worse, so his rapid improvement has been a gift from God. And the best news we've gotten in weeks -- if Everett continues to improve as he has in the past few days, the doctors say he can go HOME Friday! No word yet on how long of a break we'll get, but we're hoping for at least a few weeks.
Before Everett was diagnosed with leukemia, there were times in life that I felt alone. In the past 6 months I've realized that I am NEVER alone. God has sent our family an army of angels to support us, emotionally and financially, and to help us fight this battle. There aren't enough "thank you's" in the world to adequately express how grateful our family is for this continued support, but I will say thank you anyway...many many thanks to all our friends and family who have been there for us in the past 6 months of treatment, and the last week especially.
Love to you all,
Val
Tuesday, June 21, 2011
Saturday, June 18, 2011
Rough Week/Weekend for Everett
Avery and I came straight to Childrens as soon as I got home from work last night. I knew Everett was sick and having a rough week but I have to admit I wasn't prepared for how sick he looks and a practically bald head. Avery spent a short time with his brother and then he and dad headed to Ronald McDonald house for the night. I stayed with Everett and was hoping for a quiet night...this was not to be. Everett ran a fever off and on all night, and with his fevers comes elevated heart rate, increased breaths per minute, trouble oxygenating, and vomiting. I managed to get a few hours of sleep, but overall we had a tough night.
I was happy to see the doctors this morning so I could pump them for information. Here is what they had to say: 1) Everett had an infection in his blood as the result of a deteriorating broviac line; 2) this bacteria was identified as alpha hemolytic strep and while his blood is now clear of the bacteria (the antibiotics did their job) the bacteria causes a severe immune reaction that can last for days after the bacteria is gone; 3) this reaction is causing all of his current issues, most importantly the fluid buildup around his lungs that is causing him to have some difficulties breathing; 4) his bone marrow is starting to recover and his white count was 1700 (ANC around 400) this morning - this is good news and bad as it means his body is recovering and his immune system is beginning to build up again BUT it also means that the immune reaction that has already started due to the bacteria in his blood, and which is the source of all his discomfort, could get worse before it gets better; 5) the plan is to continue treating his symptoms (reduce fever, oxygen support, eliminate nausea, eliminate fluid buildup around lungs) as we wait out the reaction; 6) Dr. Tersak warned us that we could end up in the PICU if he gets much worse than he is now, but she feels he is doing as well as can be expected given the circumstances.
This afternoon Avery headed back to stay with Grammy Miller and Bugga (he has way too much energy to be cooped up in Everett's room all weekend) and I will stay here today and tomorrow to help dad with a very sick kid. Until now we have been so fortunate with no real side effects or complications to speak of. I had hoped that we would be the lucky ones who made it through this ordeal unscathed, but I realize that was just wishful thinking. Right now I would settle for some improvement in Everett's symptoms and some relief to his discomfort and maybe soon that we could all be HOME, together.
Thanks to all our friends and family for your continued prayers and support. When we are too weak to do this by ourselves, we lean on you and GOD to get us through. I can't speak for John, but I have been leaning on all of you a lot this week. Much love, Val
Everett's Shaved Head:
![]()
I was happy to see the doctors this morning so I could pump them for information. Here is what they had to say: 1) Everett had an infection in his blood as the result of a deteriorating broviac line; 2) this bacteria was identified as alpha hemolytic strep and while his blood is now clear of the bacteria (the antibiotics did their job) the bacteria causes a severe immune reaction that can last for days after the bacteria is gone; 3) this reaction is causing all of his current issues, most importantly the fluid buildup around his lungs that is causing him to have some difficulties breathing; 4) his bone marrow is starting to recover and his white count was 1700 (ANC around 400) this morning - this is good news and bad as it means his body is recovering and his immune system is beginning to build up again BUT it also means that the immune reaction that has already started due to the bacteria in his blood, and which is the source of all his discomfort, could get worse before it gets better; 5) the plan is to continue treating his symptoms (reduce fever, oxygen support, eliminate nausea, eliminate fluid buildup around lungs) as we wait out the reaction; 6) Dr. Tersak warned us that we could end up in the PICU if he gets much worse than he is now, but she feels he is doing as well as can be expected given the circumstances.
This afternoon Avery headed back to stay with Grammy Miller and Bugga (he has way too much energy to be cooped up in Everett's room all weekend) and I will stay here today and tomorrow to help dad with a very sick kid. Until now we have been so fortunate with no real side effects or complications to speak of. I had hoped that we would be the lucky ones who made it through this ordeal unscathed, but I realize that was just wishful thinking. Right now I would settle for some improvement in Everett's symptoms and some relief to his discomfort and maybe soon that we could all be HOME, together.
Thanks to all our friends and family for your continued prayers and support. When we are too weak to do this by ourselves, we lean on you and GOD to get us through. I can't speak for John, but I have been leaning on all of you a lot this week. Much love, Val
Everett's Shaved Head:
Sunday, June 12, 2011
Consolidation 2 - Day 13
Everett has been doing great this week, spending every day playing in the playroom and running around the halls of 9B making new friends. Given the choice between kids his own age and older kids, he always picks the older kids to follow around and play with...especially when those older kids happen to be girls:) He has made at least 3 girlfriends this week, and not one of them was younger than 5!
This morning Everett had to get platelets and later today he will be getting blood as well. The chemo has wiped his platelets and red cells out. Without transfusions of platelets and blood, he is at risk for bruising, bleeding, and extreme fatigue, and even a minor fall could result in internal bleeding. We have already noticed new bruises and petechiae (tiny pinpoint bruises), so it's a relief to know that the transfusion will help boost his platelet count a bit until his bone marrow recovers and begins producing them again.
In addition to low platelets and RBC's, Everett's white cells are also extremely low (also the result of the chemo doing its job). As a result, he is at risk for infection and even the common cold could land him in the Pediatric Intensive Care Unit. This means we have to be extra vigilant to avoid germs and whenever we leave the safety of 9B, Everett has to wear a mask, something he isn't usually thrilled about, but is willing to do as long as he "can go too".
With all the risks associated with Everett's low blood counts, it's funny to think that this drop in counts is what we hope and wait for. The chemo does its job by killing rapidly dividing cells. We pray every day that the chemo will kill any lingering leukemia, and at the same time it is killing healthy cells as well. When we see his counts dropping, we know the chemo is doing its job, and soon his counts will start to recover and we can go home.
After 13 days inpatient, Everett's blood counts are close to bottoming out, so now the wait for counts to recover begins. We need his counts to consistently rise before they will let him go home. Everett and I have been here for almost 2 weeks, with a few visits from dad and brother so we are extremely anxious to get Everett home so we can resume some sort of "normal" life. I'm heading home today to be with Avery, and John will stay here at the hospital with Everett until the doctors give him the green light to go home. Please say a prayer tonight that Everett's counts will start to climb so John and Everett can be home in time for Father's Day.
Much Love,
Val
This morning Everett had to get platelets and later today he will be getting blood as well. The chemo has wiped his platelets and red cells out. Without transfusions of platelets and blood, he is at risk for bruising, bleeding, and extreme fatigue, and even a minor fall could result in internal bleeding. We have already noticed new bruises and petechiae (tiny pinpoint bruises), so it's a relief to know that the transfusion will help boost his platelet count a bit until his bone marrow recovers and begins producing them again.
In addition to low platelets and RBC's, Everett's white cells are also extremely low (also the result of the chemo doing its job). As a result, he is at risk for infection and even the common cold could land him in the Pediatric Intensive Care Unit. This means we have to be extra vigilant to avoid germs and whenever we leave the safety of 9B, Everett has to wear a mask, something he isn't usually thrilled about, but is willing to do as long as he "can go too".
With all the risks associated with Everett's low blood counts, it's funny to think that this drop in counts is what we hope and wait for. The chemo does its job by killing rapidly dividing cells. We pray every day that the chemo will kill any lingering leukemia, and at the same time it is killing healthy cells as well. When we see his counts dropping, we know the chemo is doing its job, and soon his counts will start to recover and we can go home.
After 13 days inpatient, Everett's blood counts are close to bottoming out, so now the wait for counts to recover begins. We need his counts to consistently rise before they will let him go home. Everett and I have been here for almost 2 weeks, with a few visits from dad and brother so we are extremely anxious to get Everett home so we can resume some sort of "normal" life. I'm heading home today to be with Avery, and John will stay here at the hospital with Everett until the doctors give him the green light to go home. Please say a prayer tonight that Everett's counts will start to climb so John and Everett can be home in time for Father's Day.
Much Love,
Val
Thursday, June 9, 2011
Avery
I was tucking my 'other' child into bed this evening and I realized how unrepresented he has been through his brother's battle with cancer. I've approached the better half of a six pack tonight but I still remain cognizant of how special Everett's older brother is. (Avery if you read this later in life, know that drinking, although frowned upon until you're of age, induces emotions not ordinarily seen in Van Dyke men).
We are going on the 174th day of the worst 174 days of our lives. Without digging through medical bills, blogs, and Facebook posts, I would estimate that 120-130 of those days were spent in Children's hospital by Val and me, or both, leaving Avery with his grandparents and babysitters (much love to Megan). Of these days, more than not were spent with one parent and a few weeks with no parents. I don't know if Avery knows what we're going through (I myself, as a child, had to grow up probably a little sooner than I would have liked) or if it's a helping hand from God but, to use a usually misplaced phase, he is 2, going on 12.
I asked Avery tonight, as I do every night, "it's time for bed, are you ready?" "Yes," he says, "I'm ready." He grabs his white knitted blanket, one of two he's had since he was born (Everett isn't nearly as attached to the one that was meant for him), and approaches the steps waiting for me to come. "Ok, let's go upstairs and read a story" He hands me his blanket, walks up the steps, one hand clinging to the hand rail, then asks for his blanket, which he proceeds to put in "brotter's bed." (I have since stopped asking which bed he wants to sleep in, because when brother is not around, he always keeps it occupied until his return). He proceeds to the reading room (more of a hallway with a recliner and ottoman from when they were infants), stands on the chair, and pulls the string on the light. "Which book do you want to read tonight?" More times than not, it's the Bible (children's version we received from Pastor Tom). He sits down on my lap and flips through and picks a section where I should start. I read 2 or 3 stories and I tell him "All done, let's turn the light off." He stands up and pulls the string again. "I want to brush my teeth," he says (as if we've ever missed a nighttime brushing) and he gallops into the bathroom. He waits patiently by the sink for Dad to get his toothbrush ready for him, I brush, he brushes, and then drinks some water. He scampers to his room, I pick him up, and he reaches up to turn his night light on. "Daddy loves you," I say. "I love you Daddy, I love you Mommy, I love you Brotter," he says as he lies down in Everett's bed. I close the door and don't hear a sound until 7:30 the next morning.
This his how every night has been for the last 6 months for Avery and I. I haven't studied the night time habits of any other 2 year olds to know how exceptional he may or may not be, but he knows his routine, he does it without any fuss, and as incredibly hard as each day continues to be, he makes it easier on me. He may be only 2 years old, but he's had to go through this as much as we have and in some respects it's harder on him than it is on his younger brother.
If you would ask him today, "Where's Mommy?" He would say, without any hesitation, "At the hospital, with brotter, I see them this weekend."
We are going on the 174th day of the worst 174 days of our lives. Without digging through medical bills, blogs, and Facebook posts, I would estimate that 120-130 of those days were spent in Children's hospital by Val and me, or both, leaving Avery with his grandparents and babysitters (much love to Megan). Of these days, more than not were spent with one parent and a few weeks with no parents. I don't know if Avery knows what we're going through (I myself, as a child, had to grow up probably a little sooner than I would have liked) or if it's a helping hand from God but, to use a usually misplaced phase, he is 2, going on 12.
I asked Avery tonight, as I do every night, "it's time for bed, are you ready?" "Yes," he says, "I'm ready." He grabs his white knitted blanket, one of two he's had since he was born (Everett isn't nearly as attached to the one that was meant for him), and approaches the steps waiting for me to come. "Ok, let's go upstairs and read a story" He hands me his blanket, walks up the steps, one hand clinging to the hand rail, then asks for his blanket, which he proceeds to put in "brotter's bed." (I have since stopped asking which bed he wants to sleep in, because when brother is not around, he always keeps it occupied until his return). He proceeds to the reading room (more of a hallway with a recliner and ottoman from when they were infants), stands on the chair, and pulls the string on the light. "Which book do you want to read tonight?" More times than not, it's the Bible (children's version we received from Pastor Tom). He sits down on my lap and flips through and picks a section where I should start. I read 2 or 3 stories and I tell him "All done, let's turn the light off." He stands up and pulls the string again. "I want to brush my teeth," he says (as if we've ever missed a nighttime brushing) and he gallops into the bathroom. He waits patiently by the sink for Dad to get his toothbrush ready for him, I brush, he brushes, and then drinks some water. He scampers to his room, I pick him up, and he reaches up to turn his night light on. "Daddy loves you," I say. "I love you Daddy, I love you Mommy, I love you Brotter," he says as he lies down in Everett's bed. I close the door and don't hear a sound until 7:30 the next morning.
This his how every night has been for the last 6 months for Avery and I. I haven't studied the night time habits of any other 2 year olds to know how exceptional he may or may not be, but he knows his routine, he does it without any fuss, and as incredibly hard as each day continues to be, he makes it easier on me. He may be only 2 years old, but he's had to go through this as much as we have and in some respects it's harder on him than it is on his younger brother.
If you would ask him today, "Where's Mommy?" He would say, without any hesitation, "At the hospital, with brotter, I see them this weekend."
Monday, June 6, 2011
Updated Address for Everett and Ecards
Everett Van Dyke
Room 922, Unit 9B
Children’s Hospital of Pittsburgh of UPMC
One Children's Hospital Drive
4401 Penn Ave.
Pittsburgh, PA 15224
We'll be there this week and probably all of next as well. Send Everett some e-cards, he loves getting e-cards delivered to his room!
https://ecards.upmc.com/default.asp
Room 922, Unit 9B
Children’s Hospital of Pittsburgh of UPMC
One Children's Hospital Drive
4401 Penn Ave.
Pittsburgh, PA 15224
We'll be there this week and probably all of next as well. Send Everett some e-cards, he loves getting e-cards delivered to his room!
https://ecards.upmc.com/default.asp
Sunday, June 5, 2011
Done with Chemo for this Round
Everett made it through another round of treatment, Consolidation 2, with flying colors. He got 6 doses of Ara-c by IV, 2 doses of Mitoxantrone also by IV, and a dose of Ara-C by intrathecal injection (this is just a fancy way of saying they gave him a shot into his spinal fluid). Everett spiked a fever of 102 on Thursday after his nap and was feeling pretty lethargic and out of sorts for most of the afternoon/evening. Fever is a common side effect of the Ara-c, and after some tylenol and steroids, his fever was gone and he was his usual playful self. He also had 2 episodes of nausea and vomiting this week, but these also passed quickly and minutes later he was back in the playroom. His only complaint now is a very itchy head, which the doctors are treating with benadryl. Today Everett got disconnected from his IV's, which means he isn't tethered to an IV pole and can run free. He is loving his freedom and mom is happy not to have to chase after him with his IV pole in tow:)
I see kids here every day who look so sick. They've lost their hair. Their little faces are pale and their eyes are sunken. They are skinny and you can tell they feel terrible. Then I look at Everett, and I know he is a miracle already. He's smiling and happy. He's enjoying every minute of every day. He has made it through 3 rounds of treatment almost completely side-effect free. If that isn't a gift from God, I don't know what is.
The very best part of week 1 of this round was a visit from daddy and Avery, and from Grammy Connie and Great Grammy. Everett and Avery had a great time playing and got to meet Biscuit the dog (pics to follow). Both boys were exhausted after a busy day playing and when I put Avery in Grammy's car for the ride home, he looked ready to pass out. Everett was soon to follow and was asleep before 7. Most nights here I'm lucky to get that kid to bed by 10, so I know he had a great day!
Daddy just left for another week at home with Avery, working and taking care of things in OC. It was HARD to watch him leave and both Everett and I were in tears. I can tell he misses his dad and brother because he asks where they are and what they are doing many times each day and I miss John and Avery so much it hurts sometimes. Cancer sucks. Everything about it is the worst. I hate it. And I hate the time is has stolen from our family. For all our family and friends who read this blog--hug your wives, your husbands, your kids...appreciate the gift of time with them, just being a family. Don't waste any more time worrying about the things in life that seem so important but really aren't in the grand scheme of things. Life is precious and you never know when it will change forever.
Val
I see kids here every day who look so sick. They've lost their hair. Their little faces are pale and their eyes are sunken. They are skinny and you can tell they feel terrible. Then I look at Everett, and I know he is a miracle already. He's smiling and happy. He's enjoying every minute of every day. He has made it through 3 rounds of treatment almost completely side-effect free. If that isn't a gift from God, I don't know what is.
The very best part of week 1 of this round was a visit from daddy and Avery, and from Grammy Connie and Great Grammy. Everett and Avery had a great time playing and got to meet Biscuit the dog (pics to follow). Both boys were exhausted after a busy day playing and when I put Avery in Grammy's car for the ride home, he looked ready to pass out. Everett was soon to follow and was asleep before 7. Most nights here I'm lucky to get that kid to bed by 10, so I know he had a great day!
Daddy just left for another week at home with Avery, working and taking care of things in OC. It was HARD to watch him leave and both Everett and I were in tears. I can tell he misses his dad and brother because he asks where they are and what they are doing many times each day and I miss John and Avery so much it hurts sometimes. Cancer sucks. Everything about it is the worst. I hate it. And I hate the time is has stolen from our family. For all our family and friends who read this blog--hug your wives, your husbands, your kids...appreciate the gift of time with them, just being a family. Don't waste any more time worrying about the things in life that seem so important but really aren't in the grand scheme of things. Life is precious and you never know when it will change forever.
Val
Wednesday, June 1, 2011
Progress, Trepidation, and Hope
We have completed day 2 of Consolidation 2. Everett has had his Cytarabine (ARAC IT) injected into his spinal fluid today, had 3 doses of his high dose Cytarabline (HD ARAC), and more Tretinoin (ATRA) as he had before. He is also receiving 24 hour Zofran to keep him from experiencing any nausea as well as IV fluids. I stayed with Val and Everett for the first two days in case there were any signs of complication or adverse reaction to the new chemo drugs. So far we have no events to report. He will be starting MitoXANTRONE on Friday. He received his ARAC IT injected into his spinal fluid and woke up about 20-30 minutes afterwards and was back in the playroom. The Ketamine (sedative) is an amazing and humorous drug. It almost immediately made him giggle uncontrollably before knocking him out. Watching him become conscious was also amusing as his brain slowly regained the ability to communicate with his vocal cords. Saying 'Daddy' took about 3 seconds.
Here is Everett celebrating kicking Cancer's ass (check out his sock/slippers):
We got the biggest room in the joint. (Apparently when they heard Everett was coming, they set this one aside just for him)
Everett has taught himself how to properly eat an Oreo (by twisting the top off first, not sure where he learned that):
We have been amazingly fortunate to be where we're at. Dr. Friedling (Erika) said it was nothing short of amazing to see his molecular results showing no translocation of his chromosones (which produces leukemic cells).
We continued to be dismayed by some of the stories we hear from other parents in 9B in Children's. Babies relapsing, teenagers going through multiple rounds of surgeries, little girls so weak and frail from treatments that their ribs stick out of their chest. We've heard of families being torn apart by Cancer and parents who can't bare to see their children in these conditions and therefore have stopped visiting.
I keep waiting for it to get easy, like one day I'll get so use to the routine that I won't feel guilty as I felt today 'leaving' my wife and son behind or not wish I could be the one staying there with Everett and letting Val lead the more 'normal' lifestyle back in Oil City. No matter how strong you are or can be you don't ever stop worrying about what might lie ahead. I just keep trying to convince myself that Everett is too special a child not to have a chance to live his life. I just hope that God is on the same page.
Please continue to pray for our little guy, we can't wait to see what kind of man he becomes.
Here is Everett celebrating kicking Cancer's ass (check out his sock/slippers):
We got the biggest room in the joint. (Apparently when they heard Everett was coming, they set this one aside just for him)
Everett has taught himself how to properly eat an Oreo (by twisting the top off first, not sure where he learned that):
We have been amazingly fortunate to be where we're at. Dr. Friedling (Erika) said it was nothing short of amazing to see his molecular results showing no translocation of his chromosones (which produces leukemic cells).
We continued to be dismayed by some of the stories we hear from other parents in 9B in Children's. Babies relapsing, teenagers going through multiple rounds of surgeries, little girls so weak and frail from treatments that their ribs stick out of their chest. We've heard of families being torn apart by Cancer and parents who can't bare to see their children in these conditions and therefore have stopped visiting.
I keep waiting for it to get easy, like one day I'll get so use to the routine that I won't feel guilty as I felt today 'leaving' my wife and son behind or not wish I could be the one staying there with Everett and letting Val lead the more 'normal' lifestyle back in Oil City. No matter how strong you are or can be you don't ever stop worrying about what might lie ahead. I just keep trying to convince myself that Everett is too special a child not to have a chance to live his life. I just hope that God is on the same page.
Please continue to pray for our little guy, we can't wait to see what kind of man he becomes.
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