So that you understand what you are reading… Over the past twenty years I have written more than 180,000 words about the experience from the day of our daughter Rhea’s diagnosis with leukemia (April 18, 1996) until her death (December 26, 1996). I would write, put it down, pick it up, and then I would write some more. I finally finished the chronological narrative in early January of this year. Unless one has lost a child to death, I don’t think the average person would understand the obsessive desire to make sure that she or he is never forgotten. My intention for writing all those words was so that I would remember. It’s not to publish but only share to help myself remember, to process or maybe to benefit someone else.
This is a first. I’m going to share some from toward the end, but that’s always been my way…being ass-backwards. Twenty-six days from now will be the twentieth anniversary of Rhea’s death. Today, December 1 was a significant day twenty years ago. I am dropping you right into my writing. This is Chapter 22…It will include my introduction to this chapter (written May 10, 2012), Rhea’s actual writing from her journal and Mike’s postings to an email group that we kept updated during her bone marrow transplant. Sorry if it’s confusing and not visually organized well, but I wanted to share it.
May 10, 2012
For the past few weeks/months of this latest push to write this memoir, I have done more dictation of Mike’s updates and much less of my own personal writing. As I dictated the updates, there seemed to be enough detail given in Mike’s postings that I really didn’t feel the need to add to it, or what I would add wouldn’t substantially have given any deeper insight into what was happening with Rhea or with me. However, as I moved into recording the December updates, I realized that there was so much more happening personally and medically each day with Rhea than Mike could ever know or relate to “The Group.” Mike and I tried to talk multiple times each day through the BMT, but there were limits as to the time I could spend on the phone and things were happening too quickly, changing back and forth, so that I might tell him one thing at 9:00 and by 11:30 all of it had been reversed. I am not faulting Mike’s information gathering and sharing on the posts, but just saying that he was limited by the fact that I had to prioritize what I needed to tell him when we did have a moment to talk.
By the time we got to Sunday December 1, 1996, Rhea had endured more medical intervention than anyone should ever have to just to live. The previous week, as recorded in her journal and I journaled, as well, she was stabbed, suctioned, stabbed again, scanned, scolded and steroid-ed to with-in an inch of her sanity. To top it off, she was all but imprisoned with me for two months in a small hospital room. She was a wonderful, uncomplaining, patient. I started to say “patient patient,” but I was afraid it would be too confusing, but she truly did display an almost unnatural patience with all that was done to her, around her and for her. Rhea was a strong independent young woman, and the constant drip-torture of her loss of control, dignity, appearance and health had pushed her almost to the point of no return. I know that both of us wondered what we would be like if we survived the BMT.
It is ironic, after all the time she and I spent together and how much we love/loved each other, that she would write a private post about how hard the experience/steroids/and time together was on our relationship at that moment in the BMT. Her focus was on people, relationships and not so much on herself. And the sad irony of it was that her hands were so shaky and her mind disorganized enough, so that she left out the words that would later absolve me from feeling guilty about not being a perfect mother/care-giver. Now…after all these years…I still need those words, the missing ones. I could cry. At the time it happened, God gave me an almost saint-like understanding/empathy for what she was going through. Each day I reached down and God put in my imaginary bag of resources an almost endless supply of patience, medical understanding and ability to communicate with each and every one that came into contact with Rhea. Please don’t think I’m being boastful. I truly know it was God’s gift to me. I was meant to be her care-giver, and I believe that from the beginning of time God knew Rhea’s full life-story (and mine), and He knew I would be called on to do this with her and for her. I was and am truly blessed. But there were times…. There were times when too much happened too fast, when someone else was having a bad day and dumped it on us, when the others I love and care for needed a piece of me, too. I can rationally understand those facts, yet it still hurts that Rhea wasn’t able to finish her journal post that you’ll see below. Between the steroids and turning a page in her writing, she leaves out some words. Oh…I would have loved to have seen and received her forgiveness and understanding in her own written words, but that is one more wound I carry that God will need to give me grace to bear. It was extraordinary times, and she was and is an extraordinary person. I know she loved me and appreciated the care she received. There was never any doubt, but I still wish……
From Rhea’s Journal (her handwriting was shakier than the previous post):
December 1, 1996 (Sunday morning)
It’s been a pretty good day today. Except that there is a big heavy storm over mine and mom’s heads. We’ve spend so much time together, two straight months. And they have had their share of me. I have too much to say and not good enough penmanship, so I’ll just keep practicing later.
Dear Father God,
Thank You for today. It was beautiful and tranquil, and peaceful all of the time. Thank you for the reassurance through other people (family and friends) and for your reassurance that everything will work out some way. God’s got his own perfect timing – which I do trust – but it is very scary. Father, I have been really impatient with a lot of people, but not so as (much as? Words left out) with my mom. (She changes pens and the ink goes from black to blue.) I think she is one of … (next page…words left out? Blue ink) care partners I’ve ever had.
I’ve got to go,
Me-Each Friday Mike would drive to Nashville, and each Sunday he would drive back to Knoxville again. It was almost pitiful how happy he was to get to Nashville on Friday evenings, and each weekend as we moved deeper and deeper into the BMT, and more and more became complicated with Rhea’s health and her treatment, it was increasingly difficult to include him in the practical care-giving responsibly once he got there. Each of us had our roles. Mike’s main role was three hours away as the bread-winner in Knoxville, taking care of insurance, paying the household bills, maintaining the house, watching over Jeff (a junior in high school), being friend/father to live-at-home twenty-one-year-old college junior Heather, and writing daily updates for all who wanted to know how Rhea was doing (and keeping that responsibility of phone calls and emails off of me). On top of that, he worked in a high pressure executive job as Chief Financial Officer for a thriving food service company. He also had the torture of knowing his beloved middle daughter was being cured/killed each and every day, and he had no way of knowing immediately what was going on, having to wait for me to have a moment to fill him in. It was an impossible situation. So, by the time he got to Nashville on Fridays, he was ready to jump in and help. How do I say this? It wasn’t his role. I was exhausted, and could have really used the help, but once I “spoke the language” of being the on-site care-giver, I didn’t have the energy or time (with things happening so quickly) to fill Mike in or train him so he could be “me.” I needed help, that was for sure, but the help I needed was one more of presence and emotional/practical assistance so I could continue to be Rhea’s care-giver. Someone once told me during the BMT that the patient’s care-giver needed a care-giver for them, as well. Oh, that would have been wonderful! And poor Mike, I could never have done his responsibilities in Knoxville and kept things running as smoothly as he did. It was his calling, his gift. He was indeed a miracle worker at home.
But, as I was saying, with each passing week the stress built so that by the time we stirred the whole family and sometime visitors into the pot of Rhea’s BMT time in Nashville it had occasions of extreme tension and strained Mike and my communication skills. Rhea dumped on me, and Mike and I dumped on each other. We were exhausted, and there was no easy solution to how we could take a personal break. I am not sure that anyone who has never done care-giving or been responsible for a terminally ill person would understand what I’m trying to say. Using logic won’t really explain it…or fix it. It is tiring, emotional work. Weeks in a hospital hours away from home messes with your mind. Many times I asked myself how people who don’t have a faith in a higher power could ever do it. I’m sure they do, but I could never have done it without a close, personal faith in Jesus Christ. I think that’s part of why I was ultimately so mad at Him (NOT God…I was afraid and too respectful of God, but mad at Jesus) after Rhea died. It was and is okay. We (I) got over it. God was big enough to take my anger and to love me anyway, because he knew how bad I was hurting and loved me unconditionally. Thank God…and thank you, Jesus.
On with the story…. Mike’s post from December 1, 1996…
96-12-1 Day +51 11:04am (Sunday)
Dr. Wolff just came through with a new group of residents. On the surface, they seem pretty nice. Dr. Wolff was really kind this morning.
Rhea’s temperature is a little elevated this morning (100.2 last night, 99.8 this morning). Dr. Wolff said that with the gastrointestinal tract so affected by the GVHD, little “bugs” can get in there and cause bacterial infection. They have her on at least two antibiotics but said they would be watching her closely. They are not pushing her to eat right now – they still want her gut to rest a little.
Her weight is still about the same. Blood pressure is still good. Liver function is still good. The rash is a little better on her arms and legs. The rash on her stomach and back is still rough in the sense of sunburn healing. Dr. Wolff did say she will probably have some permanent pigmentation damage from the GVHD. We will see and we will pray.
Overall, Dr. Wolff was very pleased. He said things are looking much better and about all they are doing for her right now is watching. WBC was 3800, platelets 15, and packed cell volume 24 Dr. Wolff explained the ATGAM will “eat” through blood products and can decrease her white counts. He said this drug is sometimes used on patients with aplastic anemia, and they have to get worse to get better. (I think that means there counts have to go down before they go back up.) Rhea will be receiving more platelets today and more red blood.
Though blood and related products are covered by insurance, I would like to encourage any of you they can (and I know many have already), to give red blood or platelets whenever possible. If you give to MEDIC please be sure to tell them it is to be credited to Rhea. If any of you plan to be in Nashville during normal business hours, and want to give either, please let us know and will try to set up a time at the Red Cross office nearby for you to give.
We are still looking at getting out of the hospital maybe late this coming week (Friday or Saturday), depending on how things go. Dr. Wolff said they could give TPN outside the hospital if need be to get her out.
Heather and I are going to leave Nashville at around noon to try and get back to Knoxville early. We feel certain we will fight traffic and weather the whole way back.
I asked Rhea if she wanted to say anything, and she said yes: (see the following)…
“I’m sorry I have been distant in my phone calls and talking to people in general. I know it seems like I’m not here sometimes. But I’m feeling better and the steroids are coming down – I’m a little more clearheaded. Hopefully, soon I can do some responding from my own head, mouth and fingers. Thanks for being so understanding. Thanks also for all the prayers…
Really, all of the above is straight from the horse’s (not really a horse but Rhea’s) mouth.
Trudy, Heather, and I all got a good night’s sleep.
Rhea didn’t go to bed until 2:00am. She got up again this morning at 5:00 or 6:00 and rode her stationary bike. She is pretty bright-eyed this morning.
Well, enough for now. Please, in your quiet time, thank God for all that he has done and is doing.
12-1-2016 (Me again) It’s hard to believe that this all happened twenty years ago. It seems so fresh in my memory, and she (Rhea) still feels so close. Blessings, Trudy