Do you know what it's like to feel instant panic when your child has a fever...a new bruise...seems a little pale...has a crappy appetite for a few days? Have you ever looked at your sleeping son or daughter and been crushed by an overwhelming feeling of thankfulness that he/she is alive and here with you? Do you ever feel guilty that your child gets to run and play when other people's babies have been taken Home too soon?
This has been our world since December 18, 2010. 15 months have gone by, but nomatter how much time passes, we are never far enough away from that day, that moment that changed everything. Everett is doing great, and as far as we know, he is still in remission, but underneath all the amazing days, there is an undercurrent of fear and guilt. Because of cancer, we are different, our lives are changed. In many ways we are changed for the better. We appreciate each other more. We live our life focused on the truly important things in life. Our faith has been tested and we have not wavered because we know that God is in charge. Despite the "hidden blessings" that came along with cancer, we HATE cancer. We wish for a world where no other family has to fight this battle, where no more children are lost to this terrible disease.
John and I ran 6 miles yesterday, almost half of the half marathon distance of 13 miles. We worked outside all weekend and I was tired and sore. 6 miles felt like 20. I wanted to quit, but I could see Everett's face, and the faces of so many other cancer kids, the whole time. Everett cannot quit, nomatter how much it hurts or how terrible he feels, so I ran. And on May 6, 11 other amazing people will be running the Pittsburgh half marathon alongside us. Everett's Cancer Crusaders are proud to be raising money for 2 amazing organizations (Alex's Lemonade Stand Foundation and Genres Kids with Cancer Fund) that are dedicated to stomping out pediatric cancer and to helping families like ours as they fight a battle noone ever wants to fight. There are no words to adequately express how grateful we are for everyone who has offered to help with the upcoming bake sale, for all of the donations that have already been made, and for our awesome friends who are running 13 miles on May 6 in honor of our heroes, Everett, Ella, Maggie, Matty, Matt and so many other amazing kids.
One final note--Everett is having his 3rd post consolidation bone marrow aspiration tomorrow. As always, we are praying for a complication free procedure and no signs of APL.
Mom
Monday, March 19, 2012
Friday, December 23, 2011
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.
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.
Monday, December 19, 2011
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
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
Thursday, November 10, 2011
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?
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?
Tuesday, October 18, 2011
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
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
Monday, September 12, 2011
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
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
Tuesday, September 6, 2011
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."
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."
Subscribe to:
Comments (Atom)