Monday, April 14, 2008

ADAM...Part 4

And, this was the beginning of our quest to help Adam. And, a long term relationship with Children's Hospital. We began meeting with a series of Doctors...pediatricians, oncologists, surgeons, counselors, hematologists. I am so blessed that I had some medical we were not flying completely blind. And, I acquired much more knowledge than I ever wanted.

The oncologists came into Adam's care as soon as he was out of ICU. And, this was a whole world I knew nothing about. They were following protocol from the Children's Hospital of Philadelphia. Their research at that time indicated that removing the tumor was the only course of action in this type of cancer. Thus we began many long years of testing and waiting to see if the cancer returned. Many more 24=hour urine was not unusual to see a big carton of acid and urine in our refrigerator!
Blood work and x-rays of course...but the most horrendous and terrifying and hated was the bone marrow aspiration. The first one they did on him numbed me to the core. But for Adam, it was pure torture. I think they give some sedation now, but at the time...nothing. The first one they did, they laid him on his stomach, and proceeded to clean off a space at the base of his spine. Then they brought out the needle. Oh. My. Sweet. Lord. It was the biggest needle I had ever seen...big enough for the top to screw off and remove the core...leaving it hollow in the middle. Then the Dr. pressed the needle to his spine and leaned into it so as to push it into the center of his spine where the marrow was. This is nothing like a spinal tap where they go into the spaces between the bones...this was directly into the center of the bone. This was bad enough, but then they aspirated the marrow...and my baby screamed from a place that no one should ever have to go. And then it was over. He was clawing to get to me and I was so weak, I though I would pass out. The only bone marrow aspirations I had ever seen were done in surgery on a sedated patient. Never did I see anything like this in nursing school. I am shaking just typing this now...that horror will stay with me for ever. Don, being the good dad , wanted to be there for Adam and take some of the pressure off of me, said he would go with him for one of them. I told him no, that he really just should not, but he insisted. They picked him up off the floor after it was over and he never offered again. I would never have let any one else go, it was too gruesome. I later learned after doing some research on this procedure, that because there is such a vacuum in our bodies, when the marrow is aspirated through the needle, it feels as if everything inside of you is being sucked out through that tiny opening. Horrendous. brought GOOD NEWS! There was no evidence of cancer cells in the marrow! This was wonderful. We stayed in the hospital for about 2 weeks. I held up well, and was able to do everything that I needed to do for Adam. At this time in my life, I was suffering excruciating cluster migraine headaches that would sometimes last for 2-3 days. But, I did not have one the whole time we were there. We knew we were going home the next day, and that morning, I woke up with a severe migraine. I was in so much pain, I could not even walk...or even see straight. Don came to take us home, and I put Adam in the front seat with him. The Dr. gave me something to take, and I lay down in the backseat, and drifted in and out for the 4 hour trip home. I was not much better when I got home, and spent the next 2 days unable to get up. But, isn't it amazing that I never had one while I was in the hospital? This is when family and friends took over and helped get us through these difficult days.
We began a routine of visits back to Children's. At first weekly, then every 2 weeks, then monthly for a year, then every 2 months for another year. The next year found us going every 3 months, then every 6 months. And at over half of them they had to do another bone marrow aspiration. Can you imagine the horror of a little boy having to ride 4 hour in a car, knowing when he got there he was going to be tortured with this procedure? It mattered not how we tried to spin it, or help him forget it, or make promises for afterward. For the day before and the trip up, that was the only thing he focused on. We tried to not even let him know we were going until it was time to go, but he always could tell. My saint of a Mom would read, and sing, and hold, and tell stories, and tickle, and blow bubbles, and stand on her head....anything to keep him occupied as I drove. I could not have done it without her. God knew this and made it possible for her to be able to go with me and help me through this. She suffered as I suffered. And together, we tried to get Adam through this ordeal.
At the time Children's was not the big, nice facility it is now. It was a small, old building, with old equipment, that never looked clean. I'm sure it was, but it didn't feel clean, you know? I hated to go into the clinics where all the children were. Most of the parents were poor, and on welfare, and their children were always very dirty looking, as well as so sickly. The parents seemed so weary of it if they could hardly go another step. Usually they had another 4 or 5 children in addition to the one with cancer. The waiting rooms were such depressing places. All the toys were broken, and the books were colored in or had the pages torn out as if no one had tried to control the children at all. It burdened my heart so. My Missions group at my church gathered books and toys several times and I would just take them with us and leave them there when we left. I still remember one little girl grabbing a book and running to her mother and saying,"Look, Mama, it's a new one and it's got all it's words still inside!". That little girl died about a year later. Now, Children's is a beautiful facility, with all the latest equipment to treat little ones. We used to be bused over to UAB of St Vincents. I am so happy for the children that came after us.
One of the changes I tried to make during my years staying there, was to increase their awareness of the out of town patient and family. When I would stay for weeks at a time, I had no where to take a bath, we could not use the patients bath, no where to keep my clothes, no where to wash our clothes, no way to leave Adam and go to the store for supplies, etc. I met with hospital officials several times, and voiced my dissatisfaction from the point of view of a parent from out of town. I am happy to say that now there are rooms just for parent to shower, washers and dryers just for parents, sitters to stay if you need to leave, and lockers to store things you need to keep with you. Much improvement.
Adam was closely watched for 10 years. He had some precancerous cells come up on the kidney, they were removed, and never came back. He then had some to come up on the back of his neck...they were removed, never to return. All the surgery did much damage to his pancreas and he has had to have major surgery on it twice. But, he is well, he is happy, he is alive, he is married, he is a photographer, he is a Sunday school teacher, he is a Christian, he LOVES THE LORD, he is my boy...and I love him!


DebraK from ~the Bunnies Bungalow~ said...

Hi Tonya, this post really touched my heart. God has worked his wondrous ways & your son is well today! It is amazing what we all endure in our lives & it can be so hard on us as mothers.

There is a place near here for families of sick kids to stay......I was thinking of volunteering there.
Hugs, DebraK

Lynne said...

What an amazing story. I can't imagine how the bone marrow aspiration must have hurt.

You have been through so much with all of your children. God has given you the strength to work through all of the ordeals. I truly admire you.

justabeachkat said...

Oh sweet friend, this post made me tear up and it gave me chills. I can not even imagine the horror of having to go through this. As a parent, it's hard to watch our children hurt in any way, physical or otherwise. We would much rather it be us than them. I remember when I was going through everything with my cancer, I kept thinking "At least it's me and not one of my girls...Thank you Lord". Thank you for sharing this story and touching our hearts. God was with you then and he's with you now.

(I'm still praying for a miracle for Alex!)

Cherdecor said...

That was hard for me to read! I kept wanting to walk away, but I wanted to know how it turned out as well. God certainly gave you and your family grace to go through that!

When you talked about the uncleanly looking rooms, it reminded me of what Myla's family (the little baby girl I blog about) is saying about the ICU rooms. The family had to go to another floor to shower and it was a public place. I cannot understand why if it is such a great hospital, why is it not up to date? It is in Indianapolis, Indiana. The mother, brother, and grandmother stay with Myla 24-7 and has since October. They have been home for a week but returned today. They are going through a terrific trial also.

Thank you for posting about your boys. It was very interesting and God honoring.

It is such a blessing to see that your son is so well and Loves the Lord! Blessings to you!

LivingTheLife said...

Oh! Tonja...this story has me crying and I shudder to think what it must have been like for you and Adam during those bone marrow aspirtations. I know they are brutal...I still can't understand WHY they don't give them an epidural or twilight sleep or something to alleviate having to go through all that pain.

I know all about the hospital facilities lacking room for parents...I have a few horror stories of my own from all the times we spent at the childrens hospital here with our daughter...who as you know has a pancreatic disease...and now is a photographer...I bet she and Adam could have some rather lengthy conversations.

You are truly an amazing have handled these issues with such grace and love for the Lord...and what a true blessing for all of you to have your mom there with you...I know it had to hurt her to see both of you in such pain! I know some of the pain you have carried...but isn't it uplifting to know that we do not carry these burdens alone.

Blessings to you and your family...



Tina said...

Hi Tonya..I found your site through "T"..Living The Life. That son of your's is so amazing! I just spent ...hours at his site! I've got to go get dinner on the table!! OH My! Tell Adam he is fabulous! I loved everything..all the photos and the music! And your post was so sweet, I'm so happy that Adam is well and living the life our Lord planed for him...

Musicaljean said...

Once again, your story leaves me almost speechless. You and your sons are such an amazing testimony to God's grace. Thank you so much for sharing this.

And yes indeed, I am still crying out to God for Alex.

Jennifer said...

I can't even begin to comprehend how horrible that must have been to sit with him during that awful test. You are one strong woman and one wonderful mom! I have a feeling your boys already know that.

nancygrayce said...

God bless your heart! Mothers have to be strong and it's miraculous that God made us that way! I think He gave you a little extra!

windycorner said...

Thank you for sharing this story, Tonja. For people who work in hospitals and see people at their lowest, it's good to find out about outcomes like this. I worked in Radiation Therapy, ER, ICU, and nursery at different times in my career. It was always so nice when patients would come back to thank us and we could see them healthy and whole.

He Knows My Name said...

the documentation of your journey has had me on the edge of my seat and this one flowing in tears. i am just shell shocked at the trauma you all went through. what does a child much less an adult do with the memories of the horrors of the pain?

i visited his beautiful website some time ago. it is just georgeous. what talent. if lived in your area i would give him some business.

thank you for telling this story. and many blessings to you tonja. ~janel

Anonymous said...

God has entrusted you with a precious story that points others to Him. Your grace in writing it allows others to glean from the wisdom you obtained while walking through the fire. God has found you worthy of such a beautiful calling, to walk through this storm not once, not twice, but three times-the storm of watching your child suffer. That they might not be alone, but to have you to hold them. As unbearable as it is to see them suffer yet, to show them Christ. God placed them in your precious arms, it was planned long ago....He found you worthy of a very special calling-He knew you to be trustworthy to point those precious boys to Him and to show them a glimpse of His heart. You make my heart smile and my eyes cry!

DeSeRt RoSe said...

A very heart-touching story, I cried my eyes out and I'm stil sniffling.
I thank God for his mercy on you and your Adam, I have a friend who lost her 8 year old boy to cancer in the brain (don't know what its called) after doing so many operations and treatments only to leave this wolrd a couple of months ago. I'm happy for you and your son. God bless you :)

Anonymous said...

I knew all of this, but it took me actually reading about it to really get a feel for what all you guys went through. I'm so glad God has healed Adam. What a handsome young man with a bright future ... and trusting the One who holds it! God will use his story to touch many lives ... of course, He already has, I'm sure. The stories of all your boys has glorified the Father ... and you are a blessing!

Donna Skipper