On our 8th wedding anniversary, 4/20/04, our third child, Samuel was diagnosed with High Risk Childhood Acute Lymphoblastic Leukemia. On Samuel's second birthday, April 21st, 2004, he received his first round of chemotherapy. At diagnosis, his white blood count was dangerously high at 265,000.(normal 5,000-15,000). His platelets were less than 6,000 (normal 75,000 to 300,000) and his Packed Red Blood cells were less than 8%. (normal 34-40%) The PICU doctors did not think he would survive the night.
But Samuel did live through the night only to be broadsided with
many lifethreatening and unheard of complications from chemotherapy. He has lost his entire colon, appendix and cecum on day 40 of the protocol. He had an ileostomy for 16 months which had to be revised once before it could be taken down. On day 50 of the protocol, he was diagnosed with hydrocephalus with an unknown origin in which he spent three months in a comatose state, endured 7 brain surgeries and, more than 10 less invasive surgeries to drain CSF fluid from various areas. Our Neuro Surgeons feared Samuel would have permanent brain damage because it took so long to relieve the pressure in his head.
In addition to these horrors, he was septic due to massive bacterial infections, MRSA and typhlitis, had both his lungs collapse after pneumonia, acities, hepatitis, hypertension, and anorexia, all in the first three months of cancer treatment. The odds of Samuel recovering from all of these problems at the same time seemed at times, insurmountable.
He is fed with a g-tube because his anorexia continues to some extent today and is on a very special diet due to the damage to his intestines.. His anus healed completely shut and his rectum collapsed due to damage from chemotherapy and had to be surgically rebuilt 12/3/06. To say this has been a living nightmare would be putting it mildly.
Yet Samuel is happy, healthy and amazes everyone with his resilience. He has no brain damage. As of February, 2006 we walked away from all conventional cancer treatment completing about a year of a three year protocol due to continued complications. Samuel relapsed 6/21/07 and the only conventional medical option was a bone marrow transplant. This would be a certain death sentence for Samuel given his complications. Samuel achieved a second remission 8/21/07 with diet, herbs, alternative cancer treatments, prayers and God's guidance. He relapsed again a month later. He achieved another clinical remission in January 2008 which lasted three months. Due to the severe damage to Samuel's GI tract, he lost his remission in April and entered the arms of the Father May 8, 2008. Oh, how we miss him! We are glad that his suffering on earth has ended and that he is in paradise and free of all the torments of earth.
Samuel's first picture, one of my favs. Born at home in the tub 4/21/02.
Mama Jen
Some of our favorite pictures, in the beginning
Samuel is part of a family of six.
He has two sisters and one brother.
ad Mark.
Samuel with Daniel and Kaysha
They were so thrilled with his arrival~!
Samuel sleeping, definitely one of my favs...
don't we all wish we could go back to serenity?
Samuel is always a willing participant in Mom and Me photo taking, LOL~!
Samuel in the first hemp pouch I ever made.
Peek-a-boo
You would think he would get tired of being stuffed in for photos, but he was always thrilled.
Snow Pooper
Christmas 2002, Samuel, Daniel and Kaysha
Christmas 2003. Daniel, Samuel and Kaysha
Samuel's last Christmas before diagnosis.
This photo was hanging up on his hospital bed in 2004 so that his doctors and nurses could see what their goal was, to make him healthy and get him back home.
This above picture was taken of Samuel and family on 7/24/04 finally reunited with his family.
We had just come home from the hospital after 11.5 weeks away from home. After his original diagnosis we were only home a week and he had to go back in. He was diagnosed with pneumonia, MRSA, then sepsis, ileuses, lung collapse and typhlitis. He lost his entire colon, and had a hydrocephalus with unknown origin. He was hospitalized from 5/4/2004-7/22/04. He had seven surgeries in seven weeks time but was able to come home 7/22/04 thanks to the great docs and staff at Children's of Seattle. Since then, we have been back in the hospital several more shorter stays due to nagging GI issues. To date, he has had over twenty surgeries. Samuel was given a VA shunt 9/7/04 which finally was able to drain properly and has given us no more problems. It will need to be revised every few years as he grows because it is draining into his heart. He ended up having his ileostomy revised in 2/05 and then taken down 8/12/05. His anus and rectum were reconstructed 12/06 to stop the collapsing issues and Samuel had three blissful months of pain free life until we found out his leukemia had relapsed 6/21/07. Samuel had no conventional medical options so we pursued alternative treatments and got Samuel into remission not once, but three times. Each time remission failed due to the damage to his gut which happened in the very first month of chemo in 2004. In the end, Samuel's GI tract had so much damage that he was not able to overcome it and hence, the leukemia was able to get the upper hand. Samuel's spirit was freed from the prison of his failing body 5/8/08. He now resides with the King of Kings, Jesus Christ. We miss his spirit so very much but we do not miss the suffering he endured. He has a brand new perfect body to match his beautiful spirit and I give the Lord a huge shout of praise for that!
With that said, please pray for the sick. Many many children suffer. Our eyes have certainly been opened to those who need prayers. Many children we came into contact with suffered without parents present at their side which sickens me to see. If you are able to volunteer at a children's hospital, you would be a blessing to so many kids who are alone and hurting. Befriending a mom or dad who is constantly alone is also a nice thing. We spent 11.5 weeks at a hospital with Samuel in 2004 and a lot of the time, I was alone. It is very very lonely. Most of the time I spend in the hospital these days I am also alone.
If you can donate new toys, books for videos to your children's hospital, please do so. We received many gifts that were donated by anonymous people right before surgeries, bad news, for Samuel's birthday, and these were very nice to see him get. For children who sit day in day out in the hospital for weeks or even months, a new toy always makes the day a bit brighter and relieves some of the boredom!
Never underestimate the power of a kind word. I keep going day to day living off the kindness of friends and even strangers who send me notes of encouragement and prayers. My e-mail is never too full for you to send me a note. Please e-mail me anytime. E-mail and snail mail notes are cherished. I often hear people say that they don't know what to say to me....that is okay. We don't know what to say sometimes either, honestly there is nothing to say. We just pray. Friendship, prayer and a little normalcy is always a good thing. Maybe you know someone else going through a similar situation, send them a note and let them know you are thinking of them, that helps a lot. Sending notes is a non-intrusive way to show you care. Don't feel discouraged if they cannot get right back to you.
THANK YOU and may God bless you and yours today.
Kiss your babies and enjoy them today as you never know what tomorrow will bring.
If you want to do something tangible to help us defray the cost of Samuel's medical care over the last four years, please consider making a small donation to Samuel's Medical Fund through the Paypal link below. In four years time, we have tapped out every known cash and credit resource and taken out a second on our home in order to be able to stay home and care for him. Being riddled in debt only adds insult to injury. No amount of money can cover a life and I would do it all again, I would continue doing it, if he had a fighting chance at a good life.
His spirit WAS willing, but his body was too weak.
The essence of Samuel, a very loving brother sleeping with his baby sister Anna, who was only days old at the time. I was afraid he might squish her but he was so gentle and careful. Just wanting to hold her hand and cuddle up.
It was so hard to see him in this, one of my favorite pictures.
Leukemia treatment had so traumatized him that he was fearful of any stranger and no longer wants to be loved on by his brother and sisters.
Thankfully, upon returning home, this all has changed.
In Your Own Words...
"God has not forgotten Samuel. He will heal him."
"Samuel is strong, and very special"
"I am not even religious and find myself praying for Samuel"
"God is good. He will heal Samuel and give all of you the strength you need."
"I wanted to let you know that, although it may feel like it sometimes, God has not forgotten you and neither have any of us who know your story. I hope that you are able, even for just a minute, when you are unable to pray or hope anymore that you can lean back on the prayers and hopes of all who love you and are thinking of you.
Don't give up."
Samuel and Dad, Easter 2004.
This is the last picture of him taken before
we found out he had Leukemia.
He had a great day at Nana and Papa's
hunting Easter Eggs. Every time
he would find one, he would exclaim
"ah ha!" He was so adorable that day.
Samuel in the first Woolly Dream I made, with a Samuel's Soaker inside of course, LOL! It is really sad to think that he can no longer use the diapering system created around his little bottom due to chemotherapy.
Samuel in the first AYN I made,
Just about to be naughty and stand up in
the rocking chair.....
When I am afraid, I will trust in you O God, Psalm 56:3
I have set the Lord always before me, because He is at my right hand, I will not be shaken
Psalm 16:8
Be merciful to me, Lord, but I am faint. O Lord, heal me, for my bones are in agony.
Psalm 6:2
Praise the Lord, O my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases....
Psalm 103: 2-3
Our Hope and Trust is in God.
Because you are my help, I sing in the shadow of your wings, My sould clings to you O Lord, your right hand upholds me.... Psalm 63: 7-8
Thanks be to God. he gives us the victory through our Lord, Jesus Christ....1 Corinthian 15:57
Let the morning bring me the word of your unfailing love. O Lord. For I have put up my trust in you. Show me the way I should go for to you, I lift up my soul....Psalm 143:8
Those who know your name with trust in you, for you, Lord, have never forsaken those who seek you...
Psalm 9:10
You are my refuge and my sheild, O Lord. I have put my hope in your word...Psalm 119:114
In the day of trouble, I will call to you, O GOd, for you will answer me. Psalm 86:7
He personally bore our sins in His [own] body on the tree [as on an altar and offered Himself on it], that we might die (cease to exist) to sin and live to righteousness. By His wounds you have been healed....1 Peter 2
7/26/04 To left, Samuel in his Amby Hammock. I mentioned that we needed two so that Anna and Samuel would not have to share one hammock and Amby Baby came through and sent us another. Thank you to Amby for your generosity to our family. Anna loves it too! This is his favorite way to eat these days.
