We have been busy. We have had some major blessings! Lighthouse Invited us to join them on a Cancer Family Retreat, just for families with children fighting cancer, on a beach in FLORIDA! I have to say that it was beyond what I expected, it was more than I could have asked for it was peaceful, and I learned so much. Blake enjoyed it, Carson enjoyed it, we all loved it. Brant didn't go with us, instead my mom went.
From day one I have said that this journey was given to Carson and our family for a reason, reasons we don't understand, but that God has put this path before us and that we are to learn, grow, and become at peace with the journey, not today, tomorrow, or maybe even this life time, but at some point we will. "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7 "But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” Matthew 19:26
These were two scriptures that were reminded to me while we were on the beach, and did so much healing while we were there. I have said before that I have prayed more in 2 years that I ever did in my life, I find myself praying in the car, praying while sitting there, and just asking for the strength and courage for not just myself but for Carson and our family.
We drove from Atlanta Georgia to Panama City Beach, Fl. On the way down we stopped at a gas station and they had a simple chain link fence with a sign saying "WILD GATORS" and YES they were behind the old, fence, in a pond.
Our Condo over looked the Beach.... It was so peaceful.
This is Hannah she was so sweet and was very good with the boys. :)
All the moms went to get our toes done! :) it was fun and exciting to talk to them.
After a long drawn out mess; the
verdict is; that in order to do surgery Carson would need to not have Chemo for
6+ months the risk of infection is WAY too high; they would want a normal child
to have a very high immune system to do a surgery like this; it is one that
requires them to break the chest bone; and be-build the airway that is weak and
narrow. So the risk is too much for him at this time; but we are going to be
doing some more testing to find better ways to help him breath, and not get
sick so often. The doctors have really never faced a child who has cancer plus
Bronchial Malisia. So he is a “odd” case, and I hate, despise, and want to
strangle doctors when they say he is “odd” I want normal I want my child to be
NORMAL not to be the “odd” case that they don’t know what to do. We had a very
long week. We started with a PFN (Pulmonary Function Test), Then Pre-school
graduation, The next day we had an MRI to find out about leg pain; there is
some blood flow restriction in his lower calves; so we will be working with
doctors to make sure we are being proactive. He then had Chemo. Yesterday we
met with the Pulmonary Doctor to get the results of his PFN; he takes twice as
long to empty his lungs as a kids his age would, we are going to work with the
Pulm doctor to try to avoid surgery and try all options even out of the box
ones. We were really hoping the medication he was given at CHOP would have
helped much more than it did, so now we in un-charted water .He is very excited
about our upcoming trip to Light House Retreat. It sounds amazing, and I hope
it is all we are expecting as we embark on this journey, a nice vacation and
relaxation will do us great.
Pulm test He did great even though it required him to breath 20+ TIMES into a machine. The results told us that a normal child his age would empty their lungs in 6 seconds and it takes carson 12-14 to do so. :( not the best but we already knew this.
GRADUATION
As a mom with a child with cancer; we celebrate everything! I have too often been hit square in the face with when I attend services for my friends children that it could be me in those shoes; so again it reminds me that we have to LIVE we have to make the most of everything; because it could be taken, I pray it won't but it could be.
MRI- He sat still for just over an hour for this test! He did amazing! The doctors and nurses were worried he would have trouble sitting still for as long as he did but to our surprise he did awesome and did it with out problem..
waiting for chemo
Chemo
I love his selfies!!!
T-bone part of the Mascot Miracles Foundation is the boys fav.
You know my son so much better than I do. You know his sickness and the burden he carries. You also know his heart. Lord, I ask you to be with my son now.
Lord, let your will be done in my son’s life. Lord, I pray for my son just as your Word tells me to pray, for healing. I believe you hear this earnest prayer from my heart and that it is powerful because of your promise.
I have faith in you, Lord, to heal my son, but I also trust in the plan you have for his life. Lord, I don't always understand your ways. I don't know why my son has and had to suffer, but I trust you. I ask that you look with mercy and grace toward my son. Nourish his spirit and soul in this time of suffering and comfort him with your presence; and let the angels sing to him softly. Let my son know you are there with him through this difficulty. Give him strength. As may you, through this difficulty. I say these things in the name of Jesus Christ Amen
I’m not sure who first coined that phrase, but its truth becomes clearer to me everyday. And nowhere is that truth more evident than in mothers of children with a serious illness.
Throughout my years of working at this hospital, I’ve had the privilege of knowing dozens of moms who find themselves within these walls fighting for the lives and wellbeing of their beloved children. We look at them and say things like, “I could never do what you do,” and “I don’t know how you manage it all.”
But the truth is, they don’t know how they manage to keep it together, either; it’s just that they don’t have a choice. They fight because their children need them to fight. They keep going because if they don’t, who will? They learn to put their own needs and wants aside because they value the life of their child much more than their own.
When children come face to face with the Goliaths of disease — cancer, heart defects, cystic fibrosis, brain injuries and many more — it’s their mothers who gather the stones that this small child will use to fight the fearsome foe. We often revere the doctors who take care of these little ones, and it’s true, they are heroes. They make the stones so that we have weapons with which to go into battle. But often, there is a forgotten hero: the mother who gathers each and every stone, places it into tiny hands, and stands by while her baby takes his best shot.
Mothers who take care of children with serious diseases don’t have the same luxuries that the rest of us have. Every parent carries the nagging fears: What if something happens to my child? Will I be able to give my child all the things they need to help them live a happy, healthy life? How can I help them realize their full potential? And perhaps it all comes back to this question: Am I enough? Am I enough to give my child what she needs?
But, for mothers whose children are healthy, we can put those fears on the back burner. We don’t often have to look that scary monster in the eye and face the reality. We can hide our heads under the covers and pretend that as long as we can’t see the monster, he can’t come and get us. For mothers who are battling a child’s illness, that’s a luxury they cannot afford.
They are forced to face the monster head on, and their monsters look like this:
Explaining to a child why they must face yet another surgery that will bring incredible pain.
Holding frail little hands as they vomit and lose their hair and cry from the pain and frustration of chemo and explaining why the medicine seems so much worse than the disease.
Navigating the fine line between protecting the health of your medically fragile child and allowing them freedom to experience the joys of childhood.
Grieving the loss of the child you envisioned yours would be and coming to accept the reality of the one you have.
Cradling your baby in your arms as his worn-out body takes in his last breath.
Managing the guilt that you carry for so much of your time and energy being focused on your sick child, knowing that your well children need you, too.
Talking to your child about the reality of death, knowing that you would trade places with them in a second if you could. But instead, you’re faced with the heart-wrenching task of letting them go on before you.
These are just some of the burdens that the mothers of sick children carry. They carry them around every single day, and the weight is heavier than you and I can possibly know. What is astonishing, though, about this thing called motherhood is that somehow, someway there is still incredible joy. Their pain is deep, but their joy runs deep, too.
They are faced with the harsh, unfair realities so they’ve been forced to clarify what is truly important to them. They know that the most precious parts of their lives may not be around forever, so they’ll appreciate every moment. Their child’s illness has given them a higher calling, a purpose in life that is beyond any desire they’ve ever had. They know exactly what they’re fighting for.
For the rest of us who look at these mothers and think, “I don’t know how she does it,” know this: It’s not their abilities that are superhuman, it’s their love. It is this intense love for their child that pushes them out of bed every morning and forces them to keep going, no matter what odds are stacked against them.
On this Mother’s Day, look around at the mothers who are fighting for the lives and well-being of their children. Let them know you recognize that you can’t possibly understand what it’s like to walk in their shoes, but you know enough to appreciate every single step they take. Share in their hopes, their joys, their triumphs and their disappointments. Listen and learn: Their hard-won wisdom will take you far.
But most of all, love them. Love them well because they have loved others well.
2 years, 2 years, 2 years. Two years ago seems so long ago. Yet the emotions of it are at the surface. The emotions are so real, so hard, so just there. I am not sure if it is because Carson has been sick and that is is kind of what started the journey 2 years ago. I remember the ENT telling me about his open heart surgery and saying he hasn't ever seen this. Dr. Fluchel telling me this ins't cancer. If anything it was a-plastic anemia. I will never forget the look on his face, the way he hung his head as he walked in. I will never forget holding my son's hand as they told me it was cancer, I will never forget the world spinning, and just wishing I was going to wake up and it was all just a awful dream. But it wasn't. He had me call my husband; and then left since we wanted to wait till Brant could be there to talk all of the details out. I then called my mom, and told her; she asked me if she should leave work, the shock was so much. Then called my mother in law and said to hurry down to the hospital. That hour of waiting for everyone to arrive standing by the window; looking at my son; wishing I could just escape. I didn't realize the full effect of what was about to happen, the changes we would make with in our family; and the pain, and illness my son would endure!
This was him heading to surgery the day after he was diagnosed! I was scared; I held him so tight that day. He made me laugh wearing the glasses. It reminded me of the Movie Big Daddy. :)
This is him now! still fighting; still sick sometimes. But he fights with a smile, he fights with everything, and even makes us laugh along the way.
Cancer I hate that you have taken so much from our family! I hate that mother's day is now a sad day for me. But know that while you may get our family down, and you may take some of the best things in life away; you will not win, and we will come out on top, stronger!
While we were stuck in PCMC that first week Carson watched Cars OVER and OVER and OVER again, I was so sick of that movie, but it made him feel better, at night I would wake up to "Life is a highway" every time it was played. We had the DVD on contentious play-back because if he woke up he wanted to watch it. I guess it was a sign, I heard the song today, and burst in to tears, I have heard it a 1,000 times since and never has it been so emotional, but listening to it just brings back pain, but also after listening to it, the little lyrics are true. Life is a Highway, and believe us cancer Carson will do it his way!
"Life Is A Highway"
Whooo umm yeah...
Life's like a road that you travel on
When there's one day here and the next day gone
Sometimes you bend, sometimes you stand
Sometimes you turn your back to the wind
There's a world outside ev'ry darkened door
Where blues won't haunt you anymore
Where brave are free and lovers soar
Come ride with me to the distant shore
We won't hesitate
To break down the garden gate
There's not much time left today
[Chorus:]
Life is a highway
I wanna ride it all night long
If you're going my way
I wanna drive it all night long
Through all these cities and all these towns
It's in my blood and it's all around
I love you now like I loved you then
This is the road and these are the hands
From Mozambique to those Memphis nights
The Khyber Pass to Vancouver's lights
Knock me down get back up again
You're in my blood
I'm not a lonely man
There's no load I can't hold
Road so rough this I know
I'll be there when the light comes in
Just tell 'em we're survivors
[Chorus]
Gimme gimme gimme gimme yeah
[Chorus]
There was a distance between you and I (between you and I)
A misunderstanding once
But now we look it in the eye
Ooooo...Yeah!
There ain't no load that I can't hold
Road so rough this I know
I'll be there when the light comes in
Just tell 'em we're survivors
[Chorus: (x3)]
Life is a highway
I wanna ride it all night long
If you're going my way
I wanna drive it all night long
Gimme gimme gimme gimme yeah
I am not sure why this mother's day was as hard for me as it was. Some of it I am sure has to do with the fact, that Carson has had a cough for weeks, and ENT doesn't know what to do; this is how it all started, this is how we began the whirl wind, his airway seems to be the first sign of many things. I will talk to ENT tomorrow and see when they will be scoping him since they need to see what/how much damage has been done, and if there is something we can do, at least to get him to stop coughing. I don't think I will ever forget sitting in the ER and Dr. Mier coming in and explaining the compared to open heart surgery to me because he was having so much trouble breathing; but also the Dr. wasn't sure what the answer was. I feel like we have one foot back in that boat; no doctor seems to know "why" or they tell me " he isn't text book". I long for normal, what normal I am not sure but a simple normal would work for now. I am glad today(mother's day) is over so I can hopefully pick up my pieces and move forward; continue to fight, and not let Cancer take anything more.
After our amazing weekend in Vegas; on our way home Carson got sick. When he gets sick, it goes from cold, to seriousness in nothing it seems. So we went to visit our second favorite doctor Dr. Smith. He looked at Carson and said "We are going to need labs" from there he said what do your normally do when he is this sick. I sometimes wonder why I pay doctors; if they don't know Carson's whole story, with play by play action like Dr. Corry and his Oncologist then they always seem to turn to me and ask what is "normal" for him. We got some antibiotics, and cough medicine prescriptions and then headed to AF hospital for blood and fluids. We love IV therapy at AF, they are beyond amazing. Carson is one of the very few Peds patients they have, so they all love all over him, and treat him with extra special care, all while giving me adult conversation (big plus). IV therapy couldn't do the fluids, but were amazing at getting us up to the Peds ward to do it. Summer a nurse that we used to know well when Carson was little was there. I was happy to see her there; she helped me through many hard times, and many nights I was lost when Carson was sick as a baby(before leukemia), plus she is a pro at getting IV's in! While we were there Carson spiked a fever; fever in our world equals IV antibiotics, there is always a chance that fever could be the start of a blood infection; so for us that means we want to be super pro active and get the meds started ASAP. We spent a little over 4 hours there.
This kid has a "look" of I don't feel good. It breaks my heart.
Blake often times doesn't get to visit us at the hospital, but since AF is super close to our home, I left dad to take care of Carson, while I ran to get meds filled and Blake from Grandma's. He was so happy to come visit. He asked lots of questions. We went over the rules in the car, and while walking in and waiting for our dinner from the famous pink shop, he told me the rules about 20 times. Be quiet, listen to mommy, and no running, people are sick! When we were walking up to the Peds floor Carson spotted the dogs they have in the pictures, any time he doesn't feel good, he wants an animal. There were two of them so he asked to buy one for his brother. Even when he doesn't feel good he still thinks of others. Blake only stayed for a few minutes, and then dad took him home. But at least he got to experience the mysterious hospital.
The next day we followed up with Dr. Corry. There was no one in the waiting room so we got to sit in the "normal" part for the first time in years.
Yesterday, we went to get his hair cut; I was thinking a normal little boy's cut. NOPE... he had them shave it, he didn't want hair. So we shaved it! Then when I got home Blake wanted his like Carson's .So I shaved his.
Coming up on July 12 we have our Brain Wave happening. Please if you are able to join us we would love to have you on Team Tuff Boy! The details are in the poster and also on Tuff Boy's Facebook page.
Also we are SO blessed to be able to attend this retreat for families this year. It is only for Cancer families; it is on the beach in Florida; and I can not tell you how much my heart can't wait to go. To have a time with other families facing the same thing we have, and to talk about it; and learn; and hopefully find better ways to cope with it all; I can't wait! June can not get here soon enough.
May 10th is coming fast. I see my other cancer mom friends doing celebrations, doing blood drives, and such. I on the other hand am breaking. I am so angry, mad, and sad all at the same time. 2 years we have been fighting.
Carson has been fighting hard, he has gone through the most awful things you can imagine; he stays brave, he stays strong most of the time, when he breaks it makes it 100 times harder for us, because he is such an amazing inspiring boy. He shows cancer who is boss, he chooses to be happy, he chooses to play, and be a 5 year old the best he can. He has sick moments, but never for a full day because he refuses to allow cancer to take an inch more than what it has to take. He can throw up and still want to play trucks while laying in bed; I know many adults on chemo who can't even lift their heads out of bed. He amazes me with each passing day.
I as his mom on the other hand; have last 2 years, I am pretty proud of myself, I feel like for the most part I have stayed strong, and have fought with a positive attitude. But 2 years is a long time to stay strong. It is way too long to not break. I am so mad at cancer, the time it takes out of our lives, the things it has done to my family; there are family members who I love who no longer speak to us for reason I don't understand. I have lost friends along the way (yes I have gained amazing new ones) but I miss my "old" life I guess you could say. I hate that cancer has changed everything in my my families daily life. I hate that my kids think it is "normal" to take pills, I hate, HATE that my 3 year old Blake wants to take medicine like his brother, but how do you explain to him that his brother is sick; but a sick you don't see. I hate that Carson's moods change so often that I can't keep up with how to help him. I put on the smile, sometimes it is an act, actin like I am happy, and that is "okay". But Cancer has robbed my family. I can't help but think of the way life would be if cancer wasn't here. I would still be working, talking to adults daily, making a living for my family; we would have to choose what bills to pay, what is "appropriate" to buy, and the things we should wait on. It has been 2 years since I bought myself dare I say underwear, or even a new outfit that wasn't on the clearance rack, or saved gift money from family to buy it. We used to be able to go to the park, and play, and not have to worry. When we could plan family vacations, that didn't revolve around chemo, or steroids, or if there is a risk. Brant and I love to cruise, we have went on two; not now. For one, where do you pull that money, not pay the house payment? and 2- the doctors say the risk of being on a ship with a possible illness is too high and we would have to travel with the risk of life flight-ing our child off the ship; and carry IV antibiotics.
I wish at this point with a 5 and 3 year old I wouldn't have to carry a diaper bag, that includes zofran, extra changes of clothes, wipes, and extra hand sanitize. I miss being a normal mom.
I also feel so alone, though there are plenty of people around me, they don't get it. The ones who do (other cancer moms) I can't burden them with my struggles because they are fighting their own battles. Then there is the guilt, of my friends that their children are loosing their battles; there aren't any more options for their child. I can't imagine being in their shoes; then I get angry at myself for even thinking my life is hard, I get mad for thinking how bad things suck; because at least I still have my child. then the tables turn again, and I think at what cost I have my child, chemo is destroying his ability to walk; I know he can live a happy life with out being able to walk, and most of the time it is temporary.
My husband is in the fight with me as well; but we can't have a normal conversation that doesn't involve at some point type of cancer talk, weather it be medication, doctors, or an up coming appointment. It isn't fair to him, he lost his dad to cancer, I am sure we share the same fear; though I feel awful for him he already lost his dad, he has so many struggles with that; his dad passed when he was 15; he didn't get to learn the things dads teach their sons. We are so scared, struggling to make it through some moments. The amount of "work" it takes to keep up on everything that goes with "cancer". I don't think others understand. They see a small glimpse of it, but they don't get the full picture that my family does. The constant fear of germs, the constant cleaning, the wondering the worrying. The burden that goes along with cancer is so heavy.
The song by Rascal flatts "sarabeth" says "...Cause the doctor just told her the news
Between the red cells and white, something's not right...Six chances in ten, it won't come back again With the therapy we're gonna try It's just been approved, it's the strongest there is
And I think we caught it in time..."
The doctors give you this hope and the hope is what I hold on to. We pray it is the working that the cancer won't return.
I keep hoping I can find a silver lining in this storm; I pray I find love, and peace. I am by no means a very religous person; I believe in god, I believe that the plan is set before we enter this world. He gives us tests, and gives us these trials for reasons we don't understand, and we may never understand in this life time. But I can't help but ask why, be angry, and sad. This song for me right now is a go to, it reminds me it is okay, to feel, and that one day; I will.
