Many of you know in 2009, I lost my Mom to cancer. Mom fought hard to beat the cancer but unfortunately, God had other plans.
There were so many things Mom taught me during her battle with cancer but one thing she said that has resonated with me over and over is, “I Don’t Always Understand God. But I Trust Him.”
Today I’m asking for more prayers. Prayers for a family that is beyond devastated. Prayers for peace that passes all understanding.
Here is Katie Anne’s latest caring bridge journal entry:
GO BIG OR GO HOME
“There are certain days and/or events that remain transfixed in your mind forever because of either joyful or tragic endings. The day you met your future spouse, your wedding day, the birth of your children, the death of a loved one, all leave a lasting impression on you for the rest of your life. The day we discovered Bennett’s brain tumor is one of those days. I can still smell and feel that Central Baptist triage room as well as vividly recall every detail of that horrible day. I can still see the doctor’s lips moving but not hearing anything coming after the words – brain tumor. Billy and I just stood there in the middle of the ER holding each other and sobbing, crushed by two little words that would ultimately change our lives forever. January 15, was another one of those days. Let me begin where I last left you…”
“Round 2 of high dose chemotherapy was accompanied by despicable side effects. Just like the doctors had said, it was exponentially harder than the first round. Bennett didn’t get out of bed at all and some of the days barely even moved. She didn’t talk for ten days because of the mucositis and blisters that lined her mouth and esophagus. She vomited every day and would whimper in pain because she couldn’t scream. Her birthday arrived and although we set out to be happy there was an underlying sadness to the day. I snuck in early and decorated her room with an ocean theme, Nemo and all, which she loved and her cake was unbelievable. Feelings were obscure because of the innate urgency to treasure this birthday. We sang Happy Birthday and Bennett smiled ear to ear. She blew out the candles and everybody wished for the exact same thing. Naturally she asked for a piece of cake and as soon as I gave it to her she shoved it away and looked down. It was as if our reality had resumed in the face of a three year old who could not even look at a piece of her birthday cake. Days advanced and Christmas Day was hopefully anticipated as I filled our stockings and placed gifts in the hospital chair next to her bed. Not to be outdone, this revered day turned out to be the worst yet. Bennett woke up vomiting violently and threw up her NG tube. It had to be reinserted without anesthesia which terrified her. Add to that a dressing change, cap change, line change and fever. By evening, Bennett just looked at the pretty packages with no desire nor energy to receive them so they remained unopened.”
“Shortly after Christmas we received some news that altered the course of events. That mysterious cell detected in her first spinal tap was sent to St. Jude for a second opinion. It was identified as a tumor cell. This changed the game. Timeout was immediately called in order to reevaluate before proceeding with round 3 of chemo. Over the course of the next weeks Billy and I met with multiple doctors who presented us with several options regarding where our treatment would go next. Each option carried serious implications requiring difficult decisions. I need not go into detail but we ultimately all agreed to assess another MRI and spinal tap before choosing a treatment plan, thus delaying round 3. While awaiting the scheduled MRI, we were discharged from the hospital and came back to the RMH on New Year’s Eve. It was startling to see the effect that another round of high dose chemotherapy has had on our Bennett. Her movement is disjointed and she has difficulty running. She gets tired quickly because of the weeks spent in a hospital bed. She vomits every day and has had her NG tube replaced several more times. Even worse is her emotional stability linked to the drastic changes she has incurred over the past six months. Her safe haven is the RMH and she becomes upset at the thought of leaving. We tried to once and she went into a panic rage that sent us back immediately. No doubt this will take time. Still, her will is strong as ever and she seems determined to attempt everything this house has to offer.”
“And, that brings me to Thursday -the day my world forever changed. I have steadfastly prayed for a clear and precise decision for the treatment of Bennett. I have begged God to talk to me or show me a sign indicating what we should do. My biggest fear was to be asked to decide the type of treatment (or not) based upon ambiguous information that unfortunately is associated with this cancer type. God spoke and his message was clear. We met with our oncology doctors to discuss her MRI results from last Tuesday. The images showed that the tumor has doubled in size and there are also two additional tumors that were not present earlier. Here was our answer loud and clear. Bennett’s tumor type was nonresponsive to treatment. We went big. We threw the toughest, nastiest treatment at this beast and it laughed in our face. Therefore, we are stopping treatment immediately and coming home next week. We are going to get out of here, drive like the wind home and simply love on our little girl while she is still with us. I really don’t even know how I am writing or literally how I am even functioning day to day. Numb is the best word used to describe it and it still doesn’t even seem to equate. As we were talking with our doctors I couldn’t believe the things we were discussing. It was as if we were talking about someone other than Bennett. NOT MY BENNETT. I could not say the “d” word. I used phrases like “the end” or “gone” but I couldn’t and still can’t verbalize it. It is like I’m trying to trick myself into believing that this is all a very, very bad nightmare. Although I had tried to anticipate this scenario and how I would feel or react, there is nothing that can prepare you. Even though I know what is happening, I find myself still trying to dismiss it in my mind. She is here right now, so full of life, and it is hard for me to believe that she will leave us. We have no idea how long we get to love on her. That is the hardest part. The best estimate is 6 weeks to 6 months. My head hears this but my heart is not yet capable of embracing much less accepting this.”
“Terrified. That is the best way I can describe how I feel. I lay there at night and I am so scared that I start to tremble. What will the end look like? I had to ask that question and the answer is so scary that I can’t even go there in my mind. Will I ever really be happy again? I don’t know, I just don’t know. Will I be able to be a good Mommy to Juliet? I can only hope so because she is literally what is holding me together. But the biggest question I ask myself is, “Whatever am I going to do without my sweet Bennett?” There is no answer to that today. And so we once again appeal to our Heavenly Father. We need your prayers more than anything right now. I know a lot of people might question the power of prayer in these circumstances because our biggest prayer wasn’t answered. However, put yourself in my situation and you HAVE to believe. I have to believe that this is not Bennett’s home and that she is going to a place with no fear, no needles, no hospitals, no sadness period. She will run as fast as Clifford and jump as high as Curious George. And the real hope at the end of all of this is that we get to see her again at her very best. THAT assurance is what will take your faith to the next level.”
“We have been blessed with friends and even complete strangers who cared enough to send cards and come see us, relatives who rallied around us and caring doctors. The wonder of being thought of and prayed for will never leave us. We received over 3,000 Christmas cards and countless gifts. I cannot adequately express how after a very hard day I would come back to the RMH and be uplifted by reading every single one of your messages. It was very fitting that the Christmas season fell on the hardest part of our journey because it gave us the opportunity to receive hope, love and encouragement. Thank you for being with us in our darkest moments and for hearing the prayers I sometimes could not put into words. I now know what community means and how important it is. More importantly I have seen and felt God’s love through you. Thanks for loving on Bennett and my family. Pray, pray, pray for us in this final chapter. The stress is high and the emotions run deep. Day by day is how we are going to get through this. Every day is a gift. It was true before this happened to our family but only now do I truly realize it. Don’t ever try to do life alone but rely on family and friends and most of all on an awesome God. “The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge.” Psalms 18:2.”
So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most. Hebrews 4:16
I cannot begin to imagine what this family is going through. I pray for comfort and mercy for this family.
Heartbreaking….praying.
I don’t know how any mommy, any family can be expected to “handle?” this. Dear God, please…
I will piggy back onto Leslie, my sister’s, comment. Bennett and your family have touched me and brought back sadness and fears we lived through 14 years ago when we lost our Andrew to 85% curable cancer. Why could others be cured, but not Andrew? Is he paying for my sins and transgressions? These thoughts were constant as we brought him home on hospice. There is no real advice. I can give except that you must embrace each other and not judge other’s ways of grieving. We do not grieve the same and you must let each celebrate Bennett in his/her own way. You are grieving now. The realization that the future you had planned will not be. Take many pictures and video. Preserve her time when she is feeling good. Eventually they will be your refuge. It has taken me 12 years but I just watched them all. It will help to have those memories. I am praying for a miracle that only God will provide. It may not be the miracle we want, but it is there. Look hard. God bless you all.
I am so sorry. Praying for Bennett and her family.
Praying for this precious family!!
What is Bennett’s caringbridge name? I’d love to check on her daily.
I too have been praying for Bennett and her family. It breaks my heart to read this but there is comfort in knowing this precious child is in the loving Father’s hands and he will welcome her home in his perfect timing. I pray for strength, comfort, and peace for this precious family. May God’s love comfort you.
Praying for Bennett and her family.
Broken hearted and praying for this family that God will wrap his loving arms around them and give them the strength they need during this tragic time in their life.
Praying for this dear, beautiful little soul. My husband and I will remember to put her in our rosary chaplet every night.
Oh this saddens my heart!!!! I’ve been praying for sweet Bennett and will continue to do so. Bennett and her family have shown such amazing courage and faith.
My heart hurts. Praying so hard.
Praying for sweet Bennett, her precious mother and family, NOW!
I read with deep sorrow your beautifully worded story this morning. It has brought back tender memories of when I lost my sweet dad in 2006. He too was in unbelievable pain and through it all, when we were all questioning why God was letting him suffer , he just continued to remind us that “Even though I don’t know why this is happening I do know that God is good.” His faith sustained our family during that time when we were doubting. I am praying for all your family. …assured that God is indeed good. And if he does take your sweet angel I can tell you I know for sure there are gentle hands waiting to welcome her.
Your story has touched me deeply. I’m so sorry that Bennett has had such a rough life. I’m praying for comfort, peace, and healing. When the time does come (be it 6 months or 60 years) , The Lord will welcome His Angel home. Sending much love your way!!!
I am praying for this precious child and loving family. I have no words adequate enough to comfort or uplift. I only know that God is in control and pray that His will be done. Hoping you will find comfort knowing that so many care about this child of God.
Thanks for sharing about that sweet little girl, praying for her and her family. Karen S.
Praying for them!
My heart is broken for this family. Praying for them daily, and will continue to pray for a miracle. I have a 5 1/2 year old daughter…my only surviving child. A parent’s worse nightmare is for them to be sick and you cannot make it better. God bless and protect this sweet family.
Thank you, Cyndi, for sharing……praying and trusting God to meet every need for little Bennett and her precious family in the days ahead.
My eyes are overflowing with tears and the lump in my throat is the size of a grapefruit. God bless her parents for the gut wrenching but faith filled and unselfish decision they made for the rest of Bennett’s days. I cannot imagine the pain they must be going through. God bless that sweet baby girl. She is finished with her days of suffering from those horrendous treatments. No matter what, we know our God is a good and merciful God and that He is preparing a special place for that sweet angel and that in His goodness He will see Bennett’s through with His great love and compassion. My prayers for Bennett and her family are unceasing.
When my mother-in-law received her diagnosis and was told she had 3 months to live, I questioned God. She looked at me and said, “Judy, you know that God’s ways are not man’s ways.” Pure, unadulterated faith saw her through.
The tears of life can be devastating. Thoughts and prayers for the family.
As I read about Bennett, it brought back vivid memories of April 7, 2005 – the day I lost my daughter after 15 years of treatment for brain tumors. She had NF2 and the tumors were non-malignant. But, sadly, it makes no difference – any tumor in the brain is deadly. I pray for this family and know exactly what they are experiencing. You never get over the death of your child. . .it just becomes a part of who you are. God is working within this family and lovely little Bennett. Trust in the Lord always. Give my love to them.
continuing to pray for Bennett and her family
It is a privilege to pray for Bennett and her family.
Our prayers are with Sweet Bennett and her family. Trust in God he will always make things clearer. Love her and squeeze her every day you have her here on earth, knowing you will see her perfect in heaven one day. Blessings for Juliet too. I am sure it is hard on her as well. God Bless.
My heart aches for this family. Many prayers for Bennett and her family.
Praying with tears for this family. Psalm 23 assures us He will walk through the valley of death with us. I pray Bennett’s family will feel Him like never before.
Many heart sick prayers for this family. We lost our 14 year old son to an accident in 2006. It gets easier over time. You suddenly find yourself so doggone GRATEFUL for what you had, more gratitude than anger or sadness. I pray that you can experience true joy in the time you still have.
Prayers for sweet Bennett and her family.
I lost my sister to a brain tumor. It was beyond difficult, especially for my parents. I feel so sad for these parents, Bennett’s sister as well as little Bennett. May God hold them and comfort them and may their time together be filled with times of smiles and laughter. Bod bless.
No words to be said, except that I will continually lift up this family in prayer! God be with sweet little Bennett & her family. I am the “Nana” of a 3 yr. old and am so thankful for her good health.
Oh my heart is breaking for this family. Even when Bennett is cradled in Jesus’ arms, mom and dad will miss her terribly. What would any of us do without the knowledge that one day all of their family will be together with Jesus. Until then we pray for their strength and unending love for our Lord. They have my prayers.
Many prayers for this precious girl and her family!
My thoughts and prayers go out to this family,so heartbreaking. I lost a son almost 3 years ago ,and it is the hardest thing in the world.
I am just heart-broken for little Bennett and her precious family. There are many things we’ll never understand this side of life yet I know God is sovereign and works all things together for His purposes and glory. I’m reminded of the wisdom of a dear Bible teacher who once said: “When I don’t understand God’s hand, trust His heart.” I’m thanking God for the outpouring and wonderful support system this family has had. I will continue to pray for Bennett and her family during these last days that they are precious and healing for each of them. Prayer is such a gift, we can be complete strangers living hundreds of miles apart yet be joined together next to the heart of our Almighty God. Hugs to Bennett and her family and friends.
thx for the update Cyndi. Praying Jesus will give them all they need during this very difficult time.
God Bless them all at this incredibly painful time! They are all in my prayers!
having lost so many family members to this ugly killer, I am continuing to pray for this family. just as with other tragedies they will never be the same and expectations to be will be most disappointing. not having heard of Bennett and her family I was sort of thinking things were improving. God bless them all with strength and wisdom.
My thoughts and prayers go out to and for this family. I have lost a 3 year old son, many years ago. Father, I pray You will wrap Your arms of love and comfort around this family, give them the strength they need for each moment as only You can. In Jesus name. Amen
The song that has carried me through my most difficult times is “Held” by Natalie Grant:
“Two months is too little, they let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays is appalling.
Who told us we’d be rescued?
What has changed and
Why should we be saved from nightmares?
We’re asking why this happens to us
Who have died to live, it’s unfair.
This is what it means to be held
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held.”
I will be lifting up this precious child and all who love and care for her in my prayers.
Praying for sweet little Bennett and her family. Unfortunately our family knows the heartbreak of losing a child. May God hold them all at this most difficult passage. May the feel the peace of God’s love surround them. May they lean on God’s strength in life’s darkest moment.
There are no words. My heart aches for this family but is uplifted by its strength. I will pray for peace for them and for all of us.
After reading this and being a mother myself I said to myself ” how does she have such strength and peace” and I realized she doesn’t I just heard Jesus speak through her. So she is going through one of the darkest moments and she is ministering to others by being ” Jesus in skin”. The ” footsteps” poem comes to mind right now. I can definately see Jesus carrying them. Thank you for sharing this story.
So very sorry for this family. I can’t even imagine the hurt and pain. Through the reading, I know you have deep faith. Please remember Jesus is right beside you to comfort.
Will pray for peace for the family. This is the good of the internet…where the prayer chain expands.
This is so difficult to hear. Praying for peace and comfort for this family and much joy in the memories they will be making. My thought and prayers are with them!
I can’t even imagine what this mother is going through right now and will go through the rest of her life….praying for Gods comfort now and in the times ahead for her and the family!! Praying for sweet Bennett!!
Cyndi, I am praying for this precious family. My heart goes out to them. God draw them near, carry them, love them, strengthen them, heal them, in Jesus Holy Name.
Oh so heartbreaking! What a precious family! Can you share an address so we may reach out to them? Oh dear Jesus, Great Physician surround them with your love and peace that passes all understanding!
Cyndi,
I am without words. Praying that Bennett and her sweet family feel the love of our Heavenly Father during this most difficult time.
Have prayed for Bennett before and will definitely continue to hold her whole family in prayer still. Cancer is such a scourge in this world, but with faith we know this world and its trials are temporary…God bless us all.
I have no words of my own – just prayers for this little one and her family. This Scripture comes to mind: I Corinthians 15:19, 57- If in Christ we have hope in this life only, we are of all people most to be pitied…. But thanks be to God who gives us the victory through our lord Jesus Christ.
Oh Cyndi, my heart is breaking for this family. Sometimes we just can’t understand why. Praying for this family and sweet, presious Bennett.
A pain no one should ever have to experience…heartfelt sorrow for this family. Will definitely send prayers.
“Heavenly Father, our Creator…while we completely trust in your word and your plan for all of us, we are human. We struggle with the ‘why’ of situations like this. Please keep us focused on our journey back to you, and surround us with your angels and saints and your love for us until we are all home again with you. Bless Bennett and her family, especially her dear momma. We ask this in Jesus’ name. Amen”
Praying for this family
Praying for sweet little Bennett and her family!
Praying for Bennett!
Wow Cyndi, I’m lost for words!! I will pray for sweet Bennett and her family!!
Trusting the Holy Spirit to intercede with groans that words cannot express (Rom. 8:26). My heart is aching at this family’s pain. Praying for all of them! Thank you, Cyndi, for giving us the opportunity to lift them up in prayer.
Wow Cyndi, I’m with words!!! Praying for sweet Bennett and her family!!!
I am joining you in prayer for this sweet family.
i can hardly read this, let alone live it. We have a Bennett and it hurts my heart to think…….
Praying today as if this were my Bennett.
My throat is constricted and my eyes are blurry, my heart is pounding and my hands are trembling. I am banging on heaven’s door for this dear mom! Praying that she keep her feet firmly on the Rock as she watches the tornado approach.
My heart deeply aches for this momma. I cannot even imagine her pain. Prayers for peace, comfort, and sweet days ahead with Bennett.
There are no words, Cyndi… praying God will comfort and sustain them in the days and weeks ahead and that moments of joy will overshadow the enormous pain. Thank you for sharing, I will be praying daily for them.
BLessings,
xo Heidi
I admire her strength, courage, and faith in the midst of unspeakable heartache. Prayers for Bennett and her family.
Praying for Bennett, for her family but as a mom….praying for her mom.
Oh my gosh…..so heartbreaking!! …..thoughts and prayers going up for sweet Bennett and her family…..