Dad Talk 4 Years After ALL Leukemia Diagnosis
I have started this post half a dozen times in the past 4 years. I have let life get in the way of finishing. Seeing as how July 1, 2006 is the day Adeliane was diagnosed with ALL Leukemia, maybe I should put this down and finish. Hold on as this has been a long journey and is still not completely over.
Mason Bowne and Adelaine had been sick in May with cold/fevery stuff. The boys were able to overcome their sickness in a couple days. Adelaine kept getting worse.
Angela took Adelaine to our Pediatrician and he gave her some prescriptions and they went to Angela’s cousing Emily’s wedding in Mississippi. I had a work project that kept me at home.
Adelaine never quite got better. In fact she kept having more problems.
Her neck started hurting.
Her private area started hurting.
Her stomach started hurting.
She had little to no energy.
When Angela got back she took Adelaine back in to the Dr and he gave her medicine for a urinary tract infection.
I took Adelaine in again on Friday June 30 to have her urine checked out. Our Pediatrician was leaving in a couple hours to go on his first family vacation since he had started at the practice. He has four kids as well and 2 of them went to elementary school with Mason at the time.
That night, Adelaine got progressively worse, to the point Angela decided to take her into the ER at around 2 am. I had stayed up late that night with Adelaine and the boys were big enough that when they got up that Saturday morning they turned on the cartoons and sat and watched while daddy slept in.
Around 8:30 the boys came in my room and said that Miss Barb was at the door. That seemed weird to me. So I went to the door and she told me to get dressed and go to the hospital. She and Angela had been trying to call me but the ringer was off in our bedroom.
I made it to the hospital in about 15 minutes as we live pretty close. I asked at the front desk where to go as I had never been there before. The front desk staff directed me to a room on 2 South West and off I went. I actually beat them to the room.
Angela was teary eyed and exhausted. She wasn’t sure what it was, but she knew it was bad. I was still half asleep, but I assured her everything would be alright. Our good friend from church Scott Graubard showed up right after me and we all started talking.
If you don’t know Scott, you are missing out on a special person. He has seen and done some amazing things in his life. He got wounded in Gulf War 1 and he makes it funny story. You have to meet Scott at some time in your life. Add him to your Bucket List.
So Scott is cracking jokes trying to liven up the atmosphere when we see a lady from church, Becky, going into the room next door with a machine. She looks at us in total bewilderment and says. “What are you doing here?”
We still didn’t realize where we were.
But she did.
A minute later the Dr and a nurse came in and closed the door. They were both very quiet and somber.
The Dr went right to it with, “ We have done lots of test and we are 99% sure your daughter has Leukemia.” I didn’t even know what that was. I thought it was some sort of bad virus or something.
She then proceeds to babble on about this type of cancer – there it was, Leukemia is cancer – has a 97% cure rate based on when she was diagnosed if we start treatment right away. She then told us we had the option to put here on an experimental treatment path, but that was our choice. She said she would give us a couple minutes and then come back to find out what we wanted to do about her treatment, but that they needed to start right away.
I have a big Jay Leno chin. It hit the floor.
Tears welled up in my eyes.
Scott breathed heavily, said a prayer for us and then excused himself from the room.
I tried to get up out of my chair and go to the bed that Angela was sharing with Adelaine. I couldn’t move. My mouth was open so big I am surprised to this day that it didn’t come unhinged.
Some of the details are fuzzy, but I do remember that I didn’t want to use my baby as a test subject so I recommended that we stick with the traditional treatment path.
Scott came back in with the Dr and we told her we wanted the traditional path. She looked almost disappointed in that, but my ability to read expressions was all out of whack at the moment so it could have been gas.
The Dr walked out and Becky opened the door and came out of the room next door. She poke her head in and asked, “is everything alright?” I said, “not really, Adelaine has cancer. Will you please pray for her.”
She has a normal chin. It hit the floor.
Later she told us she had a feeling because we were in the childrens cancer wing. Well duh! I guess that’s why all the kids in the rooms we went past looked deathly ill and were bald. I am a genius at times and an idiot at other times. I really wish the genius happened more often.
That night, Angela sat in my lap and put her hands on either side of my face and looked directly into my eyes.
She said, “ No matter what, we can’t let this hurt us. We have to stay together.”
We then talked about what would be best for our 2 year old baby princess. Then we prayed it together.
“Dear God, rather than have Adelaine suffer through horrible treatments and then die, please take her right away.”
That is a tough one.
Our Christian faith allows us peace in death. There is no suffering in Heaven. No sickness. No pain. No grief. Plus, God is a Just God, babies get in free.
Did I really want Adelaine to die? Of course not.
Parents are supposed to outlive their children by 20+ years. I truly would rather my children go to Heaven forever than have a short horrible tortuous life filled with pain and suffering here on earth.
Our lives went through some pretty low lows after that.
Adelaine was in the hospital for a minimum of 7 days every month.
90 days to the day before she got sick, I started working at a huge company 4 miles from the house. I had 4 weeks of vacation the day I started. Pretty good health insurance and some great bosses that came to visit us in the hospital and bent the rules on the hours for me. God worked that one out.
I had a house rehab that I was finishing up (that had taken WAY too long) and the investor I was partnered with brought in another crew to finish the job. That was right as the market was started to level off. Looking back, it was a great time to step back from real estate. Again, a God thing.
Adelaine did not do well on the treatments. She wouldn’t hold still for them to jam a huge needle in her spine, so after the first 2 spinal pulls, they started putting her under for spinals.
The chemotherapy wrecked havoc on our 2 year old daughters body. There were many days she couldn’t even get out of bed. Including, the day we put up the Christmas decorations. Angela asked her if she wanted to help, but she said no I need to lay down I don’t feel good. Do you know any other 2 year old that would volunteer to go to bed rather than put up Christmas decorations?
She spent 15 days of Feb 2007 in the hospital. That is more time in the hospital than out.
In March 2007 a good friend of mine from the real estate business kept calling me to try out this juice stuff because he thinks it would help her. We had many people give us all kinds of advice and we had always smiled and nodded and said we will think about it.
My friend Fred Boisvert set up a meeting with us and he drove down from his house 1 hour away and brought the juice. Now remember I work 4 miles away. I blew him off. I had a meeting that I “couldn’t” miss. Luckily my wife as home. Oh yeah, I forgot to tell her he was coming.
He went through the juice info with her and she called me up and told her to apologize, but I wasn’t going to be able to make it.
We stuck the 2 bottles he gave us in the back of the fridge and they sat there a couple days.
Fred called everyday to check on us and see if we had given her any juice yet. No. Not yet. We still need to check it out.
At this time the only way Adelaine would take her chemo is if it was crushed up and mixed in some juice in a small Dixie cup with a little straw. The poison tasted so bad to her.
One night, I went to give her the chemo and I had forgotten to get more juice that day. I reached back towards Fred’s Magic Juice and grabbed the pitcher of Kool-aid right next to it.
Angela asked if I gave her the medicine and I said yes. She knew we were out of juice, so she asked what I mixed it with. I knew I was busted so I said “Red Koolaid”
Remember the time she sat in my lap and said we cant let this end our marriage. I don’t think she meant to include KoolAid in that statement.
Sooooooo. The next night, I decided I would shut both Fred and Angela up. We had juice, but I was going to some a little money by using Fred’s Magic Juice to mix with her chemo. It tasted far better than the grape juice I had brought home that day and it was free.
I told Angela that we should use up Fred’s Magic Juice cuz it was free and to get him off our back. So we both mixed her chemo with the Fred’s.
3 days later, I realized that Adelaine had had 3 good days in a row. A good day at that time was she could actually get herself out of bed and play.
That night when I went to mix her chemo it hit me like a truckload of broken up bricks. We started giving her Fred’s Magic Juice 3 days before!
It was not a coincidence. It can not be proven scientifically. It did however happen at the exact same time. When Adelaine started drinking an ounce or so of this juice, is when here health turned a corner.
It was not a placebo effect as she was 2 and didn’t know any different.
I did it to shut a good friend up.
But, there is no denying her health turned the corner the day she started drinking MonaVie.
Sure, she still got sick and ended up in the hospital at times. We were giving her medicine that had a warning label that this product may cause death.
This is also the time when our lifestyle changed to a healthier lifestyle. Not all at once, but little things at a time. Now we eat a mostly vegetarian diet about half of which is raw food. That is a long way from where we were in 2007.
During Adelaine’s illness we did some really cool stuff. Children with cancer in the Tampa Bay area have some AMAZING resources. However, we got hit really hard financially.
When you add a critically ill child to financial problems you get a rough marriage. There were lots of really bad moments in our marriage, but somehow God got us through. In fact, Saturday July 2, 2010 is our 11 year anniversary.
Yes, Adelaine was diagnosed 1 day before our 7th anniversary. Our anniversary every year will come with bated breath. You see the treatment she was on for 2 ½ years greatly increases the chance for cancer later in life.
Every time she has a cold, a fever, a sore throat she sneezes, she has a bruise, etc, Angela gets worried that it could be back. I have to lie to her and tell her I think it is alright. That is what a cancer dad is supposed to do.
Cancer dads have it pretty bad. I know lots of them so I feel that I am an expert of sorts.
Cancer dads are lucky because they get to go to work while mom has to stay home and worry all day. Well, cancer dads worry, too. Plus they have to worry about work. Plus they have to worry about missing so much work.
Cancer moms give their all to the sick child, often times leaving little to nothing left for cancer dad when he gets home. Yes, guys are always wired for … ummmm … “Man Needs” but when mom has had to drag a sick kid to chemo treatments and got puked on while trying to figure out how to pay all these bills, she isn’t necessarily feeling the same way.
As a man we are supposed to protect your family. When your child has cancer, there is little a father can actually do. It is quit emasculating.
I do have an answer on how a man can be empowered. Do everything in your power to reduce your families risk of cancer. Yes, the treatments have come a long way and children can live a long healthy life. The treatment is HELL ON EARTH and you do not want to have to go there.
Make sure you encourage your wife to get the kids 60+ minutes of exercise everyday. Try eating healthy. I was surprised when I found out vegetables actually taste amazing and they are cheaper than meat!
That’s right. Vegetables are healthy they save money and they taste great!
Some people are not capable of changing their entire life all at once. I am actually raising my hand at this statement. It is hard to type like this so I am putting it back down now.
Make a list of 10 healthy changes you can make in your families life and do just 1 of them today.
In a week or a month, make an additional healthy change. Not only will you reduce your families risk for diseases and health issues INCLUDING cancer, you and your family will be healthier and have more energy.
Do your homework about health and nutrition. Do not take big business or governments word about your health, seek out people that are actually in good health and listen to them. One of our favorite resources is Mercola.com. He has a newsletter that you need to sign up for. His website is one of our go to places for answers on healthy living.
No. I am not a tree hugger. I am a right winged Christian capitalist pig. I have seen that good nutrition is much better for your body than the frozen fast food garbage that we are trying to force our bodies to live on.
Oh yeah. Have a great 4th of July. God Bless America.
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