Another Angel

We cried today, tears of immeasurable sadness, as our community stood beside Chad and Jessica McNellie as they said goodbye to their precious Ella, and while we cried, all the angels in heaven cried too, tears of joy, as God welcomed another angel Home.

My heart is broken for this amazing family. I have felt the gut-wrenching fear that a parent feels when faced with the possibility of a future without their child, and I can only imagine the grief and emptiness Ella's family must feel now that every parent's worst nightmare has become reality. No parent should have to travel the path Chad and Jess are facing, and I feel helpless knowing that all we can do is stand beside them as their world is forever changed.

Ella was a beautiful girl, with the most amazing smile I have ever seen, and an unbreakable spirit. She fought cancer, a terrifying adversary for most adults, with a courage beyond her years, and no matter how hard cancer fought back, she never gave up. In 7 short years, Ella taught us lessons that we will never forget about what is truly important in life, and we are all changed because she was here.

For the past few months it has been my fervent prayer that God would work a miracle and cure Ella's cancer. Selfishly, I prayed that he would do this here on earth, so that we could continue basking in the incredible light that was "Ella", but He had other plans. As we stood next to Ella's family and friends today, I realized that while it might not be the miracle I had been asking for, God DID work a miracle...Ella's cancer is no more. Her pain is gone. That beautiful little girl is enveloped in God's loving arms and she will never again know what it is to suffer. Because of Ella, hundreds of people, many complete strangers, will never be the same. Her story and her incredible spirit have made them better. Our human minds cannot understand why God chose to call her Home so young, but I rejoice knowing that Ella is finally free of the burden of cancer and she has an eternity in heaven to make up for all the things cancer took from her here on earth.

Christmas is just around the corner. For most of us, it is a time of wonder and happiness. As you attend church, open presents, and enjoy Christmas dinner with family and friends, take a moment to remember the McNellies and others who are struggling with their own loss. Pray that God will ease their burdens and bring them comfort, carrying them when they are too weak to go on.

Scars...A Year Later

As of yesterday it has been one year since Everett's diagnosis with Leukemia. As you all know it's been a very scary, up and down, year with several life threatening infections, many tears, and far too many sleepless nights. It seems odd to me how this will be the boys first 'real' Christmas since we spent last year's Christmas in the hospital and the year before they had just turned 1.

When your child is diagnosed with cancer, you become part of the community, for better or for worse. We have met so many children and as selfish as we try to be in focusing on our Christmas and how we spend it together as a family, there is a huge part of us who remembers our extended family. We think about Lily who lost her life before her second birthday. We think about 7 year old Ella who is currently under Hospice care. We think about Maggie who is undergoing chemo and radiation treatments. We think about Matt, Matty, Mose, Gilly, and the many others who have had it far worse than we have. I admit sometimes I try not to think it because as painful as it was before Everett was diagnosed it hurts ten times more now. I don't know where we would be right now if we weren't one of the lucky ones. As grateful as we are we never escape these feelings of guilt of being one of the blessed survivors...

We still discuss how much of his experience Everett will remember and what his feelings will be of the hospital. Ironically enough, visiting the hospital is one of his favorite activities still, even with the blood draws through a needle in his arm. For the next 2+ years it will be a 'fun' trip to the hospital to see our saviors, Mindy, Stacey, Dr. Tersak, and Dr. Friedling.

Both he and his brother have been through so much already and still have visible scars from the NICU from their central lines and nasal cannulas. Everett has scars from a PIC line as well as insertion points for his Broviac line in his chest. Even if he doesn't have many memories from spending the better part of his second year of life in the hospital and birth in the NICU, he will always have the scars to remind him and us of what we've been through.

We will take the rest of this year and enjoy it as a family but we plan to use Everett's cancer as a motivation for serving meals to families at Ronald McDonald house, starting a charity in his name, and being a shoulder for those who have it worse than us.

Take some time this holiday season and be grateful that you have the ones you love, remember the ones you've lost, and pray for those suffering, especially the children and their families. We escaped what could have been a horrifically painful Christmas with nothing but a few scars, but we are the blessed ones.

"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed." 1 Peter 4:12–13

Giving Thanks

As we fast approach Thanksgiving and the one year anniversary of Everett's diagnosis, I want to take a minute to give thanks. The past year has been the most difficult time of our lives. We spent much of it apart, watching the doctors pump Everett's body full of poisons, helpless to do anything but pray for God to protect and heal him, and to give us the strength to get through to the other side. It would have been easy to get lost in the struggles and fear, and to lose sight of the blessings all around us, but every day we witnessed a miracle, some small, some huge, and they reminded us that even in our darkest moments, there is so much to be thankful for.

Below is an abbreviated list of the things I am most thankful for:

1. Our two incredible children - From the moment I knew they existed, I loved them, and I have thanked God every day for letting me be their mom. Hearing the words, "Everett has leukemia", brought a fear into my soul that only another parent who has heard those words can understand. Words cannot express the gratitude I feel a year later, knowing that Everett is cancer free, and that he and his brother are happy, healthy little boys, who have been virtually untouched by all that cancer brought into our lives.

2. My wonderful husband - John has been my rock for the 5 years we have been married. I didn't think I could possibly love him more, but cancer changed that too. Marriages come crashing down in the halls of 9B-the Children's Hematology/Oncology floor. The stress of having a child with cancer takes it's toll, and families are torn apart. But somehow our marriage has weathered the storm, and we have becomes stronger. I could not have gotten through the past year without John beside me, and I am so grateful to have him as my partner in life.

3. Our amazing family and friends - It's true that you find out who your real friends are when things get hard. They are the ones who are right there beside you, nomatter how bad it gets. John and I have been blessed with more friends than we ever knew we had, as well as a family that has been there for us over the past year, supporting us through it all. What a blessing you have all been during an extremely difficult time.

4. Our jobs - They provide for our family and allow us to be there for Everett's treatments and clinic visits. This has been huge for us in the past year. We know moms/dads that have had to quit working so they could be there for their child's treatments, and we have seen children whose parents could not be there at all because they could not afford to be out of work. John and I were lucky enough to have jobs and bosses who were flexible, and we were both able to keep working AND be there for Everett's treatments.

5. Megan - When Everett was diagnosed, we had to pull the boys out of daycare. We had only been back in Oil City for 2 months at that point and we had no idea who to ask to watch the boys, or who we could trust to handle Everett's special situation. Then we found Megan. The boys love her, and it is obvious that she loves them right back. I hate that I have to leave them everyday to go to work, but knowing they are safe in Megan's care makes it so much easier.

6. Children's Hospital of Pittsburgh and the amazing doctors and nurses who work there - They saved Everett's life and for that I am eternally grateful.

Our God is so good. He is there with us, everyday, walking with us, carrying us when we can't go on alone, providing us with everything we need, if we only ask. He has blessed our family over and over again. Everything on my list, I owe to Him.

What are you thankful for?

Calling all Prayer Warriors

It has been a while since our last blog update, mainly because we have been too busy to post since Everett was discharged from his final round of inpatient chemo, but also because there has not been much to report. Everett continues to do well and started maintenance treatments 2 weeks ago. I was worried about my 3 year old taking pills every day, but he surprised me again, and takes them right down without resisting at all. These cancer kids are so fierce! They face challenges and battles head on every day, when most adults would run screaming the other way.

One cancer kid in particular, Ella McNellie, is as fierce as they come. At just 20 months old, she was diagnosed with rhabdomyosarcoma, a cancer of the soft tissue, connective tissue, and bone. More than 5 years later, she is still fighting this beast, and has endured 8 rounds of chemo, 3 rounds of radiation and 8 surgeries, all with a courage and bravery that I wish I too possessed, and more often than not, with a smile on her face. Ella, like so many of the cancer kids we have been blessed to have met in the past 10 months, is a fighter and an inspiration to those around her. She has endured more than any child should ever have to, and through it all she has never given up. We could all learn a lesson from this amazing little girl!

Ella and her family need our prayers. This morning during her 8th surgery to remove a tumor, surgeons discovered that the tumor had spread to spots that could not be removed due to their proximity to vital organs and blood supply. This is devastating news to a family that has been through so much, and the family does not know yet what, if any, options they have left.

Please lift this family up in prayer. We ask for prayers for Ella's complete healing, and strength for her parents and siblings who have been fighting the fight right alongside her for 5 years. We also ask for prayers for the doctors and nurses who will be caring for Ella and making decisions about what further treatment options are available, that they will be guided by God's hand to know what is best for Ella.

Many of you follow this blog via facebook and post your comments there. We ask that you post all comments regarding this particular blog post directly on the blog so that Ella's family will be able to read them and draw strength from them. Here is a picture of Ella:

Val

Another Blood Infection

Avery and I spent the weekend with Everett, daddy, and Grammy Van Dyke. Everett has been running a fever since Friday night and his little body is using every ounce of energy it has to fight an alpha strep infection of the blood. This is no small thing when you have no immune system, and the last time Everett had this infection the doctors warned us that many kiddos end up in the Pediatric Intensive Care Unit, and some need a ventilator to help them breathe due to the fluid that can build up around the lungs. So far Everett is doing better than anyone expected and despite feeling pretty crappy, he played with Avery most of the weekend. We are praying constantly that the antibiotics will work to help fight off the infection, and that Everett's bone marrow will recover and start making the infection fighting white blood cells that he needs to kick alpha strep's butt so he can come home.

As usual, Sunday night came too fast and it was time for mommy and Avery to go home. Leaving is always hard, but leaving a very sick Everett was heart wrenching. I can still hear Everett crying "I want my mommy", and Avery saying he "wants daddy and brother to come home too" with tears streaming down his little cheeks. I keep telling myself that, God willing, this is the last time our family will have to spend weeks apart. I remind myself daily that the hard part is almost over. But my heart breaks into a million pieces every time John and I have to tell the boys that Everett has to stay in the hospital and one of us has to go home with Avery. We've had to say goodbye so many times in the past nine months that I've lost track of the number, and it never gets easier.

On the day that Everett was diagnosed, the doctor told us that "the next 8-12 months would be hard and to remember that fighting cancer is not a sprint, it's a marathon". "Hard" was a pretty big understatement, but as we get closer and closer to the end of this marathon, I am so grateful to God for giving John and I the strength to get up and face each day, nomatter how difficult. Cancer doesn't ask you if you're up for the battle ahead. One sentence changes everything, and whether you're ready or not, the choice is made for you. We have been fully relying on God to get us through this time and as always, he has been answering our prayers daily. God is good!

Mommy

The Chosen Mothers by Erma Bombeck

The Chosen Mothers
By Erma Bombeck

Most women become a mother by accident, some by choice, and a few by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in giant ledger.....

"Armstrong, Beth, son, patron saint Matthew";
Forrest, Marjorie, daughter,patron saint Cecilia";
Rutledge, Carrie, twins, patron saint Greard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one, God? She is so happy." "Exactly," smiles God," Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.” “I watched her today," said God. "She has that feeling of self independence that is so rare and necessary in a mother. You see, the child I’m going to give her has its own world. She has to make it live in her world and that’s not going to be easy." "But Lord, I don’t think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can’t separate herself from the child occasionally, she'll never survive. Yes, here is the women I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see.....Ignorance, cruelty, prejudice...and allow her to rise above them." "And what about her patron saint" asks the angel, his pen poised in mid air. God smiles and says...."A mirror will suffice."

Consolidation 4

     Everett finished his last round of inpatient chemo last Friday night (8/26) with no issues and now we are waiting (and waiting) for his blood counts to drop to zero and then to begin to recover so we can break out of this place for the last time.  This round went as smoothly as all the others, with only a few episodes of nausea and vomiting.  We have hit a minor bump in the road in the past 24 hours as Everett has been drinking a TON of fluids, but has not been peeing much at all.  The doctors gave him lasix last night and that seemed to flush the fluids out of his little body for a short time at least.  However, today we are back to dry diapers.  The doctors don't seem super concerned, but as the "crazy mom", I am getting more and more nervous as the hours go by.  I probably shouldn't have read that very long list of possible chemo side effects after all:(

     We met 3 families this week, 2 with boys (ages 2 and 14) who were diagnosed with leukemia just this week and 1 with a little boy who was diagnosed a month ago with stage 4, high risk neuroblastoma.  Everything I read about pediatric cancer says how "rare" it is, but it doesn't seem so rare as we walk the halls of 9B.  The rooms are full of cancer kids.  For some, this place is old hat, but too many are just starting their journey.  Everett and I have been doing our part to help the new kids acclimate to the oncology floor.  He is loving all the new friends he has here and it makes me beyond happy to see him having so much fun.

     John and Avery will be here tomorrow to celebrate the boys' 3rd birthday.  We have a party planned in our hopsital room with party hats, noise makers, and a Curious George cake big enough to feed the entire floor.  It's not how I imagined we would be celebrating their birthday a year ago, but we make the best of the cards we have been dealt.  I'll be sure to post pics of the festivities.  Much love to all of our prayer warriors!

Mom

   

8 months

     We are almost 8 months into our battle with cancer, which is just crazy to me.  It feels like it was only yesterday that I was a newcomer to this fight, having just been told that my baby has leukemia.  And at the same time, the past 8 months have felt like an eternity. 

     Since December 18th, 2010, Everett has had 16 doses of chemo, 50 doses of arsenic, 172 doses of ATRA, 14+ days of IV antibiotics for a potentially deadly blood infection, 4 bone marrow aspirations, 2 lumbar punctures, 33+ bandage changes, and has spent 124 days in the hospital.  Through all of it, Everett has been a ray of light to everyone around him.  He wakes up happy everyday and spends his time laughing and playing nomatter what life hands him.  Doctors, nurses, and other patients come by his room to see him, because "Everett brightens even the worst day".  To say that Everett is special doesn't even come close to describing the kind of child that Everett is, and every night, when I tuck him into bed, I thank God for allowing me to be his mom and for giving us all another day with him.
     We can't forget Avery in all of this.  What an amazing little guy he is too.  While he hasn't had to endure the medications and the procedures that his brother has, his life has been turned upside down for the past 8 months as well.  He has spent 21 weeks minus his twin and one (and at times, both) of his parents.  Weekends are exciting because he gets to "go to the hospital to see brother", but Sundays come too fast and it's time to go home again, usually without brother.  I keep expecting to see the effects of all this turmoil in Avery's behavior, but so far he is the same happy little boy that he was before cancer came into our life.  It is my hope that when all of this is finally over, I can look at the boys and say that they have been untouched by the experience of cancer, and if they are changed by it, that it is only for the better.

    Since Everett was discharged following Consolidation 3, we have had 2 wonderful weeks as a family and we plan to enjoy the next week as much as possible before we are scheduled to return for Everett's final round of inpatient chemo on August 16th.  We can almost see the light at the end of a very long, dark tunnel.  We are nowhere near done with cancer, as Everett will still have to undergo chemo at home for the next 2 and half years, and will have regular blood work and bone marrow aspirations to monitor for any signs of a relapse, but our time inpatient at Childrens for intensive chemo will soon be a thing of the past.  What a relief it will be to feel like our life is our own again, no longer dictated by cancer and the chemo schedule.

     Much love and many thanks to everyone who has supported us emotionally and financially over the past 8 months.  Your prayers and generosity have always come just when we needed it most. 

Here are some pictures that were taken of Everett and Mommy (when he still had hair):

Consolidation 3

     After a very brief break from treatment, Everett and I are back at Childrens for Consolidation 3.  He was admitted Tuesday afternoon and has already received 2 of his 3 doses of chemo (Idarubacin) for this round.  So far so good.  Everett has been running the halls, playing in the playroom, making new friends, and searching for bugs in the healing garden (a wonderful outdoor garden area on the 6th floor).  He gets so much attention here that I think he LIKES being here.

     As for mom, I am desperate for a "normal" life.  Before Everett was diagnosed, I might have told you our life was boring.  Now, I would give anything for our boring life.   The one before all this, when we took for granted that our children were healthy and we assumed that when we weren't at work, we would be spending our time TOGETHER, as a family.  One day changed so much, and I often find myself wishing we could just go back.  I wish Avery and Everett didn't know what it's like to spend their days and nights apart.  I wish that Everett didn't have to be afraid once a week when it's time to change his bandage because he knows that "it's going to hurt".  I wish that I didn't have to meet all these families who are walking the same terrible path that we are.  Mostly, I wish that I didn't have to feel the constant fear that I carry with me day after day.  I wish I could forget all about cancer, and that we could spend our summer like everyone else...splashing in the pool, running through the sprinklers, vacationing at the beach. 

     No matter how much I want it all to stop, we can't go back in life.  We can only keep pressing forward.  For now that means doctors appointments, inpatient stays, chemo, bone marrow biopsies and lumbar punctures, and far too much time away from each other.  Everett is such a fighter and every day he shows me what true courage is.  It's my job as his mom to be there beside him, fighting too, so that someday soon we can get back to our ordinary, boring life.  Although I'm not sure our life will ever be ordinary again:)

Val

Doing MUCH Better

     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

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:



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

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."

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

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

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.



Bone Marrow Aspiration No. 3

     John and I took Everett to Childrens yesterday (May 24) for his 3rd of countless bone marrow aspirations.  Everett wasn't allowed to eat after midnight Monday and couldn't have anything to drink after 10 am yesterday morning, which might not have been so bad except his appointment wasn't until 1:30.  I'm sure Everett must have been starving and thirsty, but he's such a trooper...he only asked me for something to eat once, and after I explained that he had to go to the hospital for a test and that he couldn't eat or drink until Mindy (his favorite nurse) said it was okay, he never asked again.  I was expecting tears and pleading from him for snacks and milk, but as usual, he just did what we asked him to do, without even a little bit of fighting on his part. 

     The bone marrow aspiration went well and took less than 15 minutes from start to finish.  John and I were allowed to stay in the room with Everett while the doctors and nurses did the procedure.  I told myself before they started that I would NOT get upset, that if Everett could go through the procedure without tears, so could I.  I probably would have been okay, but when the doctor started to insert the needle to collect the bone marrow, Everett lifted his whole body up toward the doctor, and the very thought that maybe he was aware of what was going on and could feel pain, sent me over the edge.  The doctor said they would give him a little break and they gave him more sedative to be sure he was under, and the rest of the procedure was smooth sailing.

     It took quite awhile for Everett to wake up from the sedation and when he did wake up he was feeling pretty nauseous.  The nurse gave him some zofran to help settle his belly, but that didn't seem to do the trick.  They gave him ativan as a second try, and that seemed to work, so they let us leave the hospital around 5:30.  We were going to grab dinner (since John and I hadn't eaten all day either) and then head home, but never even made it into the restaurant before Everett got sick again.  We decided to grab drive through and get Everett home ASAP.  We were almost home when Everett started saying he didn't feel good.  We got him home and he seemed okay, until he threw up all over himself and the kitchen floor.  Thankfully, that was his last episode and he slept soundly all night.

     We hope to have the results of the bone marrow aspiration this Friday, and we are saying our prayers that Everett is still in remission. The doctors are hopeful and said that they expect nothing but good news.  When your child has leukemia, the hope for continued negative bone marrow tests is one of the things that keeps you going.  It's the reason you allow doctors to pump poisons into your child.  It's the thing you hold on to when you don't feel strong enough. 

Val 

2 week break!

     Since our last post Everett has completed his second round of Consolidation 1 (2-3 hour arsenic infusion 5 days/week for 5 weeks).  He did AMAZING as usual, and aside from the week we spent battling a GI bug, the past 5 weeks of treatment have been uneventful. 

     We are so excited to be together as a family for longer than just the weekend and found out last week that this break from treatment will be 2 weeks, which is a week longer than we expected.  When I say it, 2 weeks doesn't sound like that long, but after 2, 5-week rounds of treatment, where we only spent friday through sunday nights together, 2 weeks as a family sounds like an eternity.  Finding out your child has cancer changes everything in your life, and for me, one of the hardest changes to deal with has been having to spend so much time away from my husband and my boys.  Thank God for our breaks, where we just get to be a regular family.

     We will be taking Everett to Childrens next Tuesday (May 24) for a bone marrow biopsy to see whether our little fighter is still in remission.  We ask for prayers that the leukemia is still gone and that he sails through the biopsy with no complications. 

     Everett will then be admitted for Consolidation 2 on Tuesday, May 31, and will remain hospitalized throughout his treatment and until his blood counts begin to recover and he has enough of an immune system to safely come home.  This next round of treatment means ATRA twice a day for 14 days, a lumbar puncture to check for leukemia in the central nervous system, a dose of chemo given directly into his spinal column, 2, 3-hour IV infusions of a very high dose of chemo on days 1-4, and a short infusion of another type of chemo on day 4.  Consolidation 2 has the potential to be pretty rough, so please say a prayer that God will carry Everett through his treatments, protecting him from the worst of the side effects.
 
     We would like to thank our amazing friends and family for their continued support.  Without all of you, I know we couldn't get through this.  In particular, John and I want to say a special thank you to our Rondald McDonald House sponsor (you know who you are).  This person has been amazing, paying for our entire Ronald McDonald House stay since Everett's initial diagnosis.  There are no words to fully express what a gift this has been for our family.  Having a sick child means a lot of time spent away from work (unpaid) and countless additional expenses every month from medical bills (even with great insurance and medical assistance) to the cost of weekly trips to Pittsburgh for treatment.  But thanks to the generosity of one person, one of our major expenses (housing while Everett is at Childrens) has been taken care of, so that we don't have to stress or worry about how to pay for it.  Thank you, thank you, thank you. 

Val

Rough Week

It's been awhile since our last update, which generally means that all is well.  Everett is almost done with his 3rd of 5 weeks of Consolidation 1b, and was doing great as usual...until Monday morning when he woke up with a fever.  He and I were headed to Childrens for week 3 of arsenic treatment, and hadn't even made it out the door before he threw up all over the kitchen floor.  With the average kid, a fever and vomiting isn't cause for concern, but with Everett every fever could mean being admitted as an inpatient, so I was more than a little worried.  I got him to the clinic as fast as I could and his nurse and doctor agreed that our little guy was not himself.  After a quick exam and blood cultures, the doctor diagnosed an ear infection and started fluids and antibiotics.  We were all hoping that Everett would be feeling a lot better Tuesday morning.  He did pretty well Monday night though he had very little energy and just wanted to cuddle, but unfortunately, things got worse Tuesday morning with more vomiting and severe diarrhea.  The doctors think he has a GI virus in addition to the ear infection, and have been giving him lots of IV fluids when we are in the clinic for his arsenic.  Today was a little better, no vomiting at least.  I'm saying my prayers that he wakes up tomorrow feeling a lot better. 

Seeing Everett so sick this week has been tough on me, mostly because there is nothing I can do to make him feel better.  But it also reminds me just how lucky we have been this far in his treatment.  All of the meds that are used to treat Everett's leukemia are poisons and come with a laundry list of potential side effects.  So far he has sailed through all of it side-effect-free.  What a blessing and gift from our amazing God. 

Much love,
Val

On to Consolidation 1b

I think I was remiss in my last post in saying we were 'finished' with Consolidation 1.   Technically, Consolidation 1 has 2 - 5 week outpatient treatments and as of today we have started part 2 of Consolidation 1.  (It will be the middle of May before Consolidation 1 is complete)  The process is the same as before:  Val and I are taking turns each week being at the Ronald McDonald house while Everett gets his Arsenic every day for 5 weeks and ATRA for the first 2 weeks.  The parent not in Pittsburgh gets to enjoy some one-on-one time with Avery Caker.

We know what to expect this round and we don't have the fears we had the first go-round.  We try to take it a day at a time but we know once this round is over we'll be back inpatient with high doses of Cytarabine and Mitoxantrone, including injection into Everett's spinal cord.  Knowing that his treatments will most likely consume the whole summer and will leave him frequently with a poor immune system we are struggling coming up with ideas for him to enjoy the nice weather and doing the things a 'normal kid' can do.  Dad is doing his best this week to gate in our deck and maybe next weekend we'll get a sandbox for the boys to play in.

For now we wear our "My Son is my Hero" shirts proudly and know that we're blessed to have Everett with us.  Like new parents, we still check to make sure Everett is breathing every night before we go to bed.

Below are some pictures from the Children's Museum in Erie where Avery and Everett had an amazing time last weekend.

Much love to all those who have and continued to support us.  Your thoughts, blessings, and prayers get us through each day when we need that little boost.  One day, hopefully soon, Everett will thank all of you personally.  God bless.

Finished with Consolidation 1

Well we've made it through a month of Induction, waited 3 more weeks to start Consolidation, and made it through 5 weeks of Consolidation 1a.  It's hard to believe that we've been through 3 months of treatments already.  Everett's ANC was 1500 this week (the highest I can remember it being).  We are getting a three week 'break' (he will still need his medication and changes of his bandages where his broviac line is) as a family. 

After this, Consolidation 1b starts and is 5 more weeks just like this round.  After another 2 week break, Consolidation 2 starts, which is only 2 weeks long, we'll have another 2 week break, and Consolidation 3 will start yet another 2 week treatment.  Unfortunately Consolidation 2 and 3 will be inpatient and may last longer than 2 weeks as we will have to wait for his ANC to reach a certain level again before he can come home.  At least with Consolidation 1 we're outpatient so we never stay overnight in the hospital.  Being back in the hospital will be tough for all of us.  I hope he can have an enjoyable Spring and his counts recover quickly.

Everett has inspired us in many ways.  Over the last week alone, Val and I have given blood (my first time), got typed for bone marrow donation, and have made donations to charity.  We encourage everyone to give blood, to get typed for bone marrow, and find a good charity.  We have met so many families that have gotten life saving bone marrow transplants.  We know that some day they will call and our bone marrow will be used to directly save a life.  There is also a chance that Everett could need bone marrow during one of his later treatments so how could we ask for something that we're not willing to give?  If you would like more information on the bone marrow registry or would like to join, click here:  http://www.marrow.org/JOIN/. 

As for Avery, he has been struggling as of late.  He seems to have had enough with the constant changes with mom and dad leaving every week.  Last week he had 3 different people help watch him.  Watching him break down every time one of us has to leave, and even sometimes when I go upstairs to work, really breaks our hearts.  This week after I told him Megan would be watching him and I had to go to work, he didn't say a word or make a noise, but the tears just started rolling down his face.  It's like he was trying to be tough for me but just couldn't hold it in (very much like dad).

We ask that you continue to pray for Everett, our strength, and for Avery as well.  Mom and Dad are going out tonight to try and have some alone time.  Love you all.

Week 4, almost done

Week 4 of 5 will be finished tomorrow morning.  Then Daddy, Everett, and Gramma will be heading to Oil City for the weekend.  Everett had another great, event-free, week this week and we're very happy about that.  Today someone from the National Pediatric Oncology Group stopped by and gave Everett a forehead tattoo that I thought we'd share with everyone.

She also took his picture (better than mine) and said it would be presented at an oncology conference.  Everett's doctor also said he'd be a good candidate for a Children's Oncology Telethon this fall.  We might have to consider that one.

Thanks for all the continued support.  Much love from Everett and all of us.  God bless.

Consolidation 1 Week 3

Last week was mom's week to take Everett to Children's for his arsenic treatments.  It was another uneventful week, which is just the way we like it.  Most days we were at the clinic by 9:30, hooked up to his arsenic IV and EKG monitor and running by 10:00 and back at Ronald McDonald house by 12:30 or 1:00.  Everett hasn't had a single side effect from the arsenic so far and we pray that his last 2 weeks (and his second round of arsenic) are the same. 

Each day that I spend with Everett at the clinic, where they pump his little body full of poison in hopes of killing every last leukemia cell, I am amazed by how brave and strong he is, and I am shocked that a 2 year old will sit in one spot for 2 and a half hours playing quietly simply because mommmy told him he had to so he could get the medicine that will make him all better.  Whatever the nurses and doctors ask of him, he willingly complies, and even asks "can I help you?".

Everett is doing great, smiling and laughing, playing and just being himself.  Every day at the clinic, he runs to greet his nurse and has a way of making everyone's day a little bit brighter.  So far he seems unfazed by the turn his life has taken, and we are working hard every day to make sure that he and Avery have as "normal" of a life as possible.  For now normal happens to include weekly trips to the hospital.

As for me, I feel privileged to be able to take this journey with Everett.  With every fiber of my being, I hate that he has to fight cancer, but I am so proud to be his mom and every day I am inspired by him.  Each day is a struggle to hang on, and some days I don't feel strong enough, but I will for him and for Avery...because they deserve everything in life and it is our job as parents to do everything we can to give it to them. 

Our Clinic Champ

Well Everett and I braved the ice storm last Sunday night to make it to Pittsburgh for his 8:30 AM appointment.  We enjoyed watching cars turn sideways in the middle of the highway any many off to the side of the road with their flashers on.  Good news is we made it without a single slip.

I wanted to give everyone an idea of how things work at the clinic.  You check in and they quickly get you into a numbered room that is about 10' by 8' wide with a bed, many machines, and two seats.  Since Everett's treatment calls for him being monitored by ECG for the entire time, he cannot move more than a 6' radius for approximately 3 hours (now you all know why we're so proud of him).  He is simply amazing for a 2.5 year old.  He will sit quietly in his chair and play with a toy, color, or watch TV. One of the nurses asks him to dance every morning and he obliges.  He can get down and move a little bit but he never tries to get away or throws a fit.  I really don't know how he does it.  I get very anxious when our time is almost up.

Everett is on a bunch of medications now and trying to keep track of the dosing schedule requires a calendar.

• Tretinoin (ATRA, which requires mixing with soybean oil for oral dosing)
• Sulfamethoxazole (Bactrim)
• Ondansetron (Zofran)
• Clotrimazole (For what we believe to be ringworm)

I found a sign where one side said Dirty and one said Clean.  Guess which side I made Everett hold while I took his picture?

Here's another one with all his wires and tubes attached:

It seems like each week grows a little harder on all of us.  Leaving becomes more and more difficult and Avery wasn't happy at all with us on Sunday but we will get through.

Love you all!

Quick Update

Just wanted to let everyone know that Everett's Arsenic treatment is going well this week.  Not a single incident to report.  Everett and Mommy are still at Ronald McDonald but since he's doing so well, Mom is going to take him to the Children's Museum in Pittsburgh (just don't tell Avery)!  They should be headed home around lunch time Friday.

That's all for now.  If anything happens we'll keep you updated.  Thank you for your support and God Bless.

Heading Back

Mom and Everett are heading back to Pittsburgh this morning.  On Friday Dr. Tersak (Erika) called to let us know that his ANC levels are over 1,000.  We were very excited to hear this and eager to get him back to his treatments.  This will be the start of a 5 week treatment, called Consolidation I.  It will be Monday through Friday and will be outpatient provided there are no complications.  Meaning if all goes well, Mom and Everett should be able to be home Friday afternoon for the weekend.

The treatment will be his Arsenic Trioxide given via IV over the course of 2 hours in the clinic and he will get his ATRA every day orally for 2 weeks.  After the first 5 weeks is over, there's a 2 week break, and Consolidation II starts.  Mom will be doing the first, third, and fifth weeks, dad the second and fourth. 

Despite waiting and wanting the treatment begin it was very difficult for me to watch them leave today.  I had planned to be there for the first day of treatment 2 weeks ago but since it was pushed back 2 weeks and he has already had his broviac line and bone marrow test I figured mom could handle it.

Happy Valentine's Day honey I wish I could be with you and Everett today.

UGH...

Well, Everett and Mommy are headed back from Pittsburgh.  Looks like his ANC levels are still only 700 (looking for 1000+) and his treatment won't start for at least another week.  This is very frustrating as it will push his treatments back a few weeks and it's another week we have to pay for our Ronald McDonald house.  The doctors don't seem concerned with this and if he isn't over 1,000 in two weeks, his treatment will start regardless.  A visiting nurse will be by on Friday to get blood samples so we won't unnecessarily drive to Pittsburgh again to turn around and come home.

I guess if we have to have bumps these aren't too bad but every time we emotionally prepare for this round to start, we're sent home.  Hopefully it's just one more week...

REMISSION!!!

We got the very best news that parents' of a child with leukemia could get today...Everett is in remission after only one round of treatment!  The doctor called this afternoon to give us the news--she said there was no trace of leukemia in his bone marrow biopsy.  We are relieved and so thankful to our amazing God.  We know that this is just one of his many miracles.  We want to say a special thank you to everyone who has been praying for Everett.  Our prayers have been answered. 

Everett will continue with his treatment schedule as planned to ensure that his leukemia stays in remission and to reduce the risk of relapse.  The good news is that we know that the medicines are working as they should, and we don't have to live with the constant fear that maybe his cancer won't respond to treatment.

Everett and I will be heading back to Childrens Monday morning for his first round of arsenic (if all goes as planned anyway).  We are hopeful that this round of treatment will go as smoothly as his first and will continue to keep everyone posted on his progress.  

We ask that you keep our family and Everett in your prayers.  He has a long way to go until he is considered "cured" and as we have found out, anything can happen. 

Sent home...

This will be lengthy, so get a coffee and get comfortable.

We got packed up and headed down to CHP to start round #1 of his consolidation treatments Sunday night.  We were unable to get a room at the Ronald McDonald house so we were forced to stay about 2 miles away at the 'Family House' at an increased rate.  It was about 8:00PM and we were heading out to use our Olive Garden gift certificates, when Everett ran out the door to push the elevator buttons.  Unfortunately, on the other wall was an open fire alarm pull right at his height, just begging to be pulled.  He was about 2 steps in front of me and I even started the 'Noooo' but it was too late.  So we walked down the steps and told everyone who the guilty party was.  Everett enjoyed the lights and sirens, and later the firetruck but wasn't happy when he thought he had done something wrong.

We had to get up the next morning at 4:30 to be in the clinic at 5:30.  Everett did well on very limited sleep and was swept away around 7:30 and seemed to be ok with everything that was going on.  He successfully had his Broviac line put in his chest and had his bone marrow aspirate performed.  I think he has a very high pain tolerance, because unless he touched his insertion point or kneeled on his tubes, he didn't complain of any pain.  He was dead tired and we finally got him to sleep around 3:00PM.  Everett's line looks like the one below, only his goes down to his thighs.

Broviac Line

Having two wires, one blue, one red, hanging out the bottom of his shirt, creates an issue for a curious young boy, including attempts to chew on them.  (Mom did a great job today replacing his dressings and installed a 'bone' to shorten the lines and keep him from playing with them).

During his nap, the doctor came in and told us that his ANC levels (610) were too low to start his Arsenic treatment this week.  So we packed up and headed back home very disappointed.

It was about 7:00 so we decided to stop and have some dinner.  We had taken 2 cars and when Val pulled into the restaurant, Everett threw up about 20 pretzels worth on himself and his car seat.  We later came to the agreement that his anesthesia and morphine might have upset his stomach.  So we got him cleaned up, ate dinner, and drove the hour and a half home.  The anxiety of the situation made for an expedited and uneasy dinner.

We were both hoping to make the blood drive last night, but we didn't get home to close to 9:00.  We heard there was a great turnout and the boy's daycare even held a fundraiser and had an envelope to give us.  This will be very helpful as we will be checked into the Ronald McDonald House for 10 out of the next 12-13 weeks.

So, we're all back at home, Val is watching the boys today and Dad is working.  We changed his dressing, which is a process and sometimes painful for Everett but he hung in there like a champ.

Everett's Article from the Local Newspaper

Here is the article that was published by the Derrick today.  I'm surprised at how much coverage the blood drive received.  It was on the back page of the first section of the newspaper.  Not the way I thought my kids would make the paper but I'm so grateful that the blood drive is getting so much attention.  (Click on the image to read it)

Inspiring Quote from a Mother of a Child with Leukemia

I came across a blog by the mother and father of a 19 year old boy who was diagnosed with leukemia (AML) at 16.  After 8 months in remission, he relapsed and had to have a bone marrow transplant.  He endured excruciating pain, nausea, vomiting, fevers, countless viruses, graft vs. host disease...but almost a year after his transplant he is still fighting and leukemia-free. 


 I am inspired by this boy and his parents who have been through so much and yet continue to stay strong and to hold on tightly to their faith in God.  I only hope that we can be as strong  for Everett and for each other.  Everett has done so well in his first month after diagnosis, but each day is still hard, and I worry that if a time comes that his health deteriorates or the side effects of treatment are severe I'll falter in my strength and resolve.


This is a quote written by the mother of the teenager with AML:

          "I praise God for He is still holding me in His arms and carrying me through so many days that my human body would rather cry out in agony at the pain I carry in my heart for having to watch my child be so sick when he did nothing in his short life to deserve it.

 I praise Him for continuing to give me just one more day with my son.

I praise Him for pushing me, testing me, and making me stronger when I want to collapse in a heap on the floor and never get up again , because it would be so easy.

But he pries my heart open many times daily and reminds me that He has never left, and that if I ever feel abandoned, it is because it is I who have left Him.

I pray that each time I feel weak, each time I am angry, each time I am tempted to doubt, that He will squeeze me harder until I accept His loving embrace.

I pray I will seek His guidance in the Word He has given me and that it becomes emblazoned on my soul for me to live out. "

I cried when I read this...tears of sadness over what this family has had to endure, and tears of hope and inspiration at this mother's continued faith and love for God and at God's continuing presence in all our lives, bringing us strength when we need it most. 

First Clinic Visit

Everett went for his first clinic visit (of many to come) today.  They ran blood work and said his platelet and red blood cell count are great.  His white count is low, but this is to be expected after chemo.  No crowds and no sick people for us for quite a while:)  They also removed his PICC line so he will be wire free for a week or so.  As usual, Everett did great and his doctors and nurse were impressed at how brave he is:)

We are scheduled to return to Childrens on Monday, January 31st for a bone marrow biopsy and to place a new line called a broviac line, which will be used to give him his arsenic (and later chemo) and any blood products or other meds he may need as well as to draw blood.  This will also be Day 1 of Consolidation 1 treatment, which will last for 33 days.  Everett will get IV arsenic Monday through Friday and will have the weekends off.  He will get ATRA on Days 1-14 only.

Everett's doctors said that he did so well during his first round of treatments (Induction) that they plan to do his Consolidation 1 treatments in the clinic (instead of admitting him) and he will be allowed to go "home" to  Ronald McDonald house each day.  Even better, as long as his blood counts permit, he will be allowed to come home to Oil City on the weekends.  This is pretty exciting for us after being cooped up in the hospital for 4 weeks.  Ronald McDonald house may not be home, but at least it's not a hospital room.  These days even small victories like this seem huge.

Hoping for a quiet week and a half before Everett and I return to Childrens for round 2...

Val

Monday Morning Update, Blood Drive Info, and Thank Yous

Well Everett was back to his old self this weekend.  Last night he slept through the night for the first time in a long time.  We had an E.R. checkup on Saturday and we were told he looked great.  Today Carrie and Joy are watching him and his brother before they have to fly back to Philly.  Wednesday he is taking a trip to get his PICC line removed from his arm and to have another check up.

We wanted to reach out to all friends and family in the Oil City area.  Everett is having a sponsored blood drive at Trinity United Methodist Church, 2 Center Street, Oil City Jan 31st from 1:00PM to 7:00PM.  See the picture below for more information.

For all those who are not in the Oil City area, we ask that you give blood as well.  Everett has needed many blood products and will continue to in the coming months.  In addition to giving blood, another way to help, is to get typed for bone marrow.  There are many people, including kids, waiting for life saving bone marrow.  There are many great stories out there of lives saved by bone marrow donations.  (Although we hope not, Everett may need bone marrow)

We wanted to give a couple of special thank yous.  First to the friend who sent all the meals from Omaha steaks.  We've had 3 meals already and everything was fantastic and easy to make.  Great idea and Dad loves the steaks.  Second, to a donation from 'Sarah,' although we have never met you, we can't thank you enough for your donation.  It's very encouraging when people who have lost someone to cancer, dedicate their lives to helping those who are dealing with it.  We continue to be amazed by all the unexpected generousity.

That's all for now, thank the Lord is has been a quiet weekend and start to the week.  Love to you all.

E.R. Scare

Everett was pretty lethargic yesterday and had a rough night (waking up 6-7 times by my count) and slept with us half of the night.  This morning his temperature went up to 101.7, which is an automatic ER trip for Leukemia patients.

They ran his blood and took xrays and saw he had a touch of pneumonia.  Again something that isn't too bad unless you're immune compromised.  The Dr. told me that Children's Hospital might want him back but was waiting to hear from them before he ordered an ambulance.  This was a low point for me.  After 4 weeks and we finally have a break only to be sent back...

After the doctor came back he said to talk to the Dr down in Children's and she said if it was ok with us, they would give him an IV antibiotic and a prescription for more antibiotics for a few days.  After talking to Val, I told them, if they're comfortable with it, so are we.  Turns out his ANC count is well over 2,000 (which is considered completely healthy, ironically enough) and his white count is very good as well.  Along with the pneumonia just being a 'spot' they said he should be fine.  His ER doctor was great and even had a 10 year old who had leukemia when he was 2, who he says is full of 'piss and vinegar.'  Small world.

So we're home.  He fell asleep on the way home and could use a long nap.  We'll be keeping a close eye on him and taking him back to the Hospital tomorrow for a follow up.  Continue praying for his pneumonia to subside and him to be running around like he was earlier this week.

COMING HOME!

Great news -- Everett's ANC is up from 360 to over 900 today and the doctors plan to discharge him in the morning!  I learned how to mix and draw up his ATRA today so we can give him that twice a day at home.  Thanks to years at GSK in Safety Pharm this is old hat for me.  And we are all set up with a visiting nurse who will come to the house to do his bloodwork and take care of his PICC line.  Everett will get to be home for almost 2 weeks and will return to CHP on January 26 to start his first round (of 5 total) of Consolidation treatment.  John and I are so excited at the idea of all four of us being home for a couple of weeks.  It's just what we need to face another month of treatment:)  Everett has just started asking to go home with dad and Avery too, so I think he needs some time at home as much as mom and dad do. 

Issues with posting comments

I've had multiple people say they've had problems posting to the blog.  I was having similar issues.  What I did was sign in to my Google account first (in another Internet browser window or tab) and then post.  This should work with other IDs (Yahoo, AOL, Live, etc) as well.  If you're still having problems, let me know.  Posting as 'Anonymous' should always work, but leave us your name so we know who you are!

We might have some good news coming, but I'll let Val fill you in sometime today ;)

mom's turn

We are into my second day alone at the hospital with Everett.  So far he and I are doing pretty well.  We spend most of his awake time in the playroom, which is fine with me.  It keeps him happy and keeps me from having to chase him around the hallways:)  How a kid with leukemia can have so much energy is beyond me, but I am and will be eternally grateful for his smiling face and his incessant mantra of "wanna play with me mom?!?"

Yesterday Everett's counts were up a bit and we were optimistic that they would continue climbing but today his numbers are down and he needed another platelet transfusion. The doctors say this is normal as his bone marrow recovers, but it's disappointing nonetheless.  John and I are trying to stay focused on what matters most - that Everett does well with his treatments and beats this thing, but in the short term it's hard not to want him home so we can be together as a family. 

It's crazy to me when I stop for a second and realize that 4 weeks ago at this time our life was just like everyone else's, and our biggest concern was getting our Christmas shopping done, cards in the mail, and presents wrapped.  Now we face each day wondering what his blood counts will be and how his little body will react to treatments, and we pray non-stop that God will give us a miracle and cure our precious Everett.  Every day is hard and I wonder sometimes how a family does this day after day for years at a time.  But then I look around me at the other families in CHP and I KNOW that we can do it because we aren't alone and so many other families have gone before us...if they can do it, so can we.

I know that John has said it before but I want to say it myself - thanks to everyone who has sent us cards, emails, FB messages, posted on this blog, and sent packages to Everett.  Every single word of encouragement and hope gets read and read again.  John and I are so grateful and humbled by the outpouring of love and support that our family has received in the past 3 weeks.  There are no words to describe the world we live in now, and we know that we couldn't get through this without all of you giving us the strength that some days we don't feel we have.  Please keep posting, emailing, FB'ing, etc.  It brightens our day.

Daddy is home, Mommy's turn

Daddy, Gramma, and Avery are back in Oil City tonight.  Val is going to stick it out with Everett all by herself.  If anyone can do it she can.  Daddy misses Everett already and this will be his first night without him since his diagnosis.  It will be difficult to work this week knowing him and mommy are stuck in the hospital.

Everett's Absolute neutrophil count (ANC) was up to 350 today from 220 the previous day.  The ANC determines the body's effectiveness in fighting infection.  The doctor's look for a level that is greater than 500 before he can go home.  Our hope is that it will be sometime this week or weekend.  Otherwise, Everett continues to do very well.  It is amazing how many people we have met and how many stories we have heard.  Everett has made so many friends along the way.

Tuesday will be day 21 of 30 for his treatment.  If he goes home this week, we may have him home for close to 2 weeks before he would have to return to the hospital.  My goal is to have the family back together for as long a time as possible and maybe even have our Christmas this weekend.  Avery asks about his brother all the time, up to the time I put him to bed.  It's hard to know what to tell him but I just say that 'Mommy and Everett are in the hospital, brother is sick' and leave it at that.  He knows that his brother and mom are missing but isn't sure why.  He has been a champ in his own right and this helps Dad cope.  Dad is also grateful that Grammy can be here so that he isn't alone after Avery goes to sleep.

Val will take over the blog for the week.  We miss you champ and we love you!