Our 2nd family miracle Part 1 (I’ve experienced 2 miracles – sharing in reverse order)
*Sometimes it is so hard to write about old memories and feelings. I enjoyed reading this blog post recently and it encouraged me to share this memory today – http://www.thechangeblog.com/writing-heals/
22 Years ago – On November 18, 1991, my life and my family’s would change in an instant. The moment the pediatrician said “I believe Jeremy has leukemia.” Something like that changes the universe and time seems to go very slowly. I called my sister Bren who lived nearby and she came and took us to her home. (Major kudos to Bren taking care of us) I think my mom was with Brandon or maybe I left Brandon with Bren. It’s all a blur. Richard steadied me as I almost passed out in Bren’s yard as we were walking in and waiting for Billy – my (then) husband to come and take us to the Medical College of Virginia, the best teaching hospital in the area.
I kept chanting leukemia is cancer, over and over as we drove to our unknown fate. We had to be admitted thru the pediatric ER and my husband stayed with Jeremy when they drew his blood. I couldn’t bear for them to stick him and I stood in the hallway sobbing – in fact I used to cry when the boys got their immunizations before this happened.
We were taken to the 7th floor of the main hospital. The walls were painted with all kinds of children’s artwork – famous book and TV characters, flowers etc. It warmed my heart a bit to see it. Then we were taken to a private room with a stainless steel crib and a few chairs. It was stark and sterile. Billy and I both stayed the night and slept on cots.
Day 2 – The bone marrow aspiration was performed to confirm their diagnosis. Jeremy slept through that procedure thanks to some great drug.
On day 3 – a group of student doctors came in and sang “Happy Birthday” to my son for his 2nd birthday. I cried. In fact, I cried for 3 days mourning the loss of his and our innocence. I was so thankful that Brandon was able to stay at our home with my mother during this time.
My husband and I sat while the doctor and chaplain came to see us. Dr. Russell was an amazing doctor that explained things so that we could understand them. The chaplain, Ken, was a sweetheart of a man who listened as we tried to find a reason for this tragedy. I remember hearing that there was a 75% survival rate. That horrified me! That just wasn’t good enough!
Decisions for Jeremy’s treatment had to be made, a port-a-cath was recommended so Jeremy wouldn’t have to get stuck a lot in his arms for IV’s (it looked like a bottle cap under his skin in the chest and it was attached to an artery inside). I remember the first time I saw the chemo bag on his IV pole, I was horrified by the ugly color.
I have to say my family outdid themselves in support for us. My family is AMAZING when life deals you a scare. My mom and Brenda kept Brandon, Judy brought a huge cooler with fruit, drinks, snacks. Deb would offer phone support. Members from the twins club that I belonged to came and offered their support. I lived in that room with Jeremy thanks to a pull out chair/twin bed. Billy went back to work but came on weekends.
We were in hospital for 10 days the first time. Then we went to the clinic weekly for chemo. Brandon went with us and both boys loved to play in the kid’s area. We made a lovely friend in Julia – a volunteer and Jackie would dress like the fairy godmother. There was another great person who came occasionally and she had a great flower outfit whose real name I can’t remember but we called her Daffy Dil. These three wonderful women made our visits bearable. Bren would often go with me and that was a blessing all the way around. I would become friends with other parents and children in various stages of different cancers. I was horrified to hear that little Andrea had brain cancer. Kevin and Melissa both had leukemia too and there were many others. Oh God.
I remember having to hold Jeremy’s body down on the floor as I forced liquid Prednisone into his little mouth. If you’ve ever taken Prednisone in pill form you know what a terrible taste it has! I found out I could mix it with a fruit flavoring from the drug store but it still was gross. Then Jeremy would have these horrible food cravings. His little 2 year old self would stand in front of our open refrigerator and cry because he didn’t know what he wanted to eat. My mom would make him her homemade mac and cheese and that helped so much!
One scare came after Christmas because Jeremy got sick with a fever. It was determined that his port-a-cath was infected and they would have to switch it. But they had to reschedule the surgery after giving him a drug that agitated him instead of sedating him. My darling boy screamed and cried for close to 3 hours while the drug worked its way out of his system! This would be another problem to deal with over the next few years!!
I forgot to mention that Jeremy had to be admitted every other week for 3 days – Wednesday to Saturday. My husband and I (ok it was me) came up with a plan that I would go thru the lovely admission process and stay with J. Wednesday thru Friday evening and then he would come after work on Friday night and deal with the lovely discharge process on Saturday afternoon.
Finally the words we had prayed to hear – Jeremy was in remission! Thanks be to God! Our weekly treatments could be cut back if I would do one little thing. Give Jeremy a weekly chemo injection. Me. Give Jeremy a shot. Weekly. I was determined to do it. I wasn’t as soft as I used to be. Furthermore, I wanted more normal in our lives. So I learned how and I did it in his thigh muscle– each week. Methotrexate was the drug. It was a bright yellow color! I had boxes of hyperdermic needles, syringes and the sharps box along with my chart on the fridge for his medication schedule. But I would do anything to stop going to clinic so often.
Jeremy didn’t lose his hair but he had dark circles under his eyes and was pale for a long time. Life went back to a pseudo normal with monthly visits to the clinic. We were invited to 2 American Cancer Society weekends at Mountain Lake, Virginia (where they filmed Dirty Dancing) and a church sponsored our family for a week’s vacation to Myrtle Beach, SC. We were blessed to have these family outings to feel like a “normal family.”
Part 2 tomorrow – Jeremy’s relapse and bone marrow transplant – we needed a hero!