Monthly Archives: August 2022

Synovial Sarcoma.

I didn’t even want to think about it. I decided that I wasn’t going to google it, I wasn’t going to listen to any of the dire predictions, I was just going to pray and wait and bide my time. A CT scan of Ellie’s abdomen and chest as well as an MRI of her leg were scheduled promptly, and we all waited anxiously for the results. The first report was encouraging; there was nothing suspicious in the chest and abdomen. The MRI of the leg? Not so much. “The MRI showed another spot that they need to get out along with tissue around the last tumor and possibly part of some muscles and a tendon. They said that there shouldn’t be any long term effects except possibly a numb spot on the inside of her calf. They’ll send everything out for testing and see where the numbers (cancer markers) are at to see if next steps are needed or just doing scans every several months.” Surgery was scheduled for Thursday, August 4th.

We got that text on Tuesday, the 2nd. Two days before the scheduled surgery. That night I got a call from Raph. Regina was having a miscarriage. Regina and Raph, longing to be parents since shortly after their marriage, had battled infertility and when they were told that the chances of ever having a biological child were slim to none they went the route of adoption through foster care. They were unaware that Regina was pregnant, but when I thought about the timing and the implications and the emotions that my brave, resourceful daughter in law was dealing with, it seriously felt like a bad dream. They asked some questions, took advice and called the doctor in the morning (which was now less than 24 hours until Ellie’s scheduled surgery) and after close questioning and considering symptoms, it was deemed that it would be okay to wait – at least until after the surgery.

I got awake the next morning to a missed call from Raph at about 1:40 AM (I don’t take my cell phone into the bedroom at night) and then a text at 1:45 saying that they were at the ER with Regina who was having severe abdominal pain that would not subside. The wait time was 5-7 hours, and they needed to leave to take Ellie for her surgery at 7:00. I read the note and heard the desperation in his words and thought my heart would break But wait! There was another text, sent an hour later, that said, “We are back home. She’s feeling better. Please don’t call or text before 8:00.”

I thought it would never be eight o’clock! But eventually it rolled around and I was able to at least quiet my heart that Regina was feeling some better, the surgery for Ellie was going off as planned and everyone should be getting back to somewhat normal, but I was so uneasy. How would they ever manage. Regina wasn’t supposed to lift anything, and at that point we didn’t know if Ellie was going to be able to walk. If things went the way the previous surgery went, there would be nights when she would wake up and be restless. Regina would not be able to rest and recuperate like she should, and if Ellie couldn’t walk???

This Mama/Grammy needed to think.

I decided to check on airline fares into the Akron-Canton airport just 15 minutes from Raph and Regina’s house. Aha! I could get a one-way ticket for under $200! Armed with that information, I asked Certain Man what he thought I should do. He was 100% supportive. “I think you should go for it if Raph and Regina think it would help!” He said. And that was the general consensus of every single one of Raph’s siblings and their spouses! They all said that I should go.

I called Raph. “I won’t be much good at carrying Ellie around,” I said, “but she has big strong brothers that can do that if it’s necessary. I can cook, wash dishes, do laundry, take care of the kids, let the dog in and out , help pick up. I can be there so Regina can rest, and I will be happy to come if you need me.” He said that he would talk to Regina and let me know, but he thought that it might be helpful. He called back, and before I knew it, I had a one-way ticket for Saturday, August 6th, for a flight from Philadelphia to Akron-Canton via Washington, DC..

It was a bit strange, but very exciting to me how all the pieces came together in spite of what seemed like incredible opposition. I had this calm assurance that I was supposed to go to Raph & Gina’s, though and it did not waver through crazy traffic all the way to the airport (including reports of 3 accidents between us and the airport in the last 20 miles). Certain Man maneuvered his way through the most trying of situations and still got me to the airport a full hour before my departure time. I boarded and departed and landed in Washington, DC, according to schedule. That’s where things got a little hairy. I was supposed to have a 3 hour layover, (which really didn’t bother me at all) but the flight, scheduled to go out at 7:48 got delayed and delayed until I wondered if I was going to even get out of there at all that night. When it got delayed a third time time, the ticket agent, a beautiful black gal with an accent, in response to my question, “Could it be delayed even further?” Said, “Eet eess a distinct pooseebilitee.  But I don’t found oot before you do. We get the same informa-see-un that you do!” So I went back to my book and waiting until, finally around 9:45, the little jet left Washington, bound for Akron-Canton where Raph picked me up around 11:10 and brought me safely home to their home in Canton. The boys were still up and I was welcomed grandly and enthusiastically.

I could write a book about the week with my beloved Canton Yutzys. I pretty much did what I had said I would do: Cooked. (grocery shopped, too) Did laundry. Took care of kids. Let the dog in and out. Helped to pick up. I did other things besides. I tried to interest the boys in weeding. They are more inclined to mow. I baked bread and made cinnamon rolls, cooked some old favorites of Raph’s and loaded the dishwasher and unloaded it. There was nothing that I had to do, but what a joy it was to do it and the Grace of God was incredibly real to me through the minutes and hours and days. Raph and Regina were so appreciative and affirming and easy to be with! The children are some of my favorite people, Ellie was doing far better than expected, and the week sped by.

On Tuesday, I was reading Ellie her nap or bedtime story. It was “The Little Engine That Could” and I was as always, putting heart and soul into it. And then we came to this page:

Well, there was a paragraph on this page that called for “bellowing!” And being the good Grammy that I am I bellowed. Except that the bellow got strangely broken in the middle. Something really strange caught in my throat. Oh, dear. I coughed, adjusted the volume and finished the story, and got Ellie settled into her bed. But the funny little tickle continued.

At the beginning of the week, Regina had some doctor appointments. She hadn’t been experiencing the excruciating pain, but she was still wasn’t feeling at all well, and sometimes I would see her face awash with an almost indiscernible look. I saw weariness, discomfort and grief mixed with a faraway look that concerned me so much. There were things I could not do – the boys needed to do school shopping and Ellie’s incision (a long, ugly thing) needed tending. Regina handled things expertly, resting often, but by the middle of the week, a procedure was scheduled for Friday morning. This was where Raph and I began to have some discussions about when I was going to go home. I had scheduled a return flight for Saturday morning, but I kinda felt like I should stay longer, and he said he would be happy if I did. I was getting anxious to be home and Certain Man’s birthday was on Sunday. On Thursday Raph, Gina and I sat down and discussed things. Regina’s family was standing at the ready to help in any way that they could. Her sister, Marilyn, was already planning to spend Saturday with her with the option of Sunday if needed. Her Mom, Saloma, was also ready to help out the next week if needed. I didn’t want to leave them in the lurch, but it sounded like they might be okay. Besides . . .

“There is one more thing,” I said. “I’m out of my prescription meds as of Saturday . . .” I was going to say that I could call Certain Man and the people at home and have them send them, but before I could say anything else, my Eldest Son said, very decisively, “Then you are going home on Saturday! That settles it!” And so, with great joy and even a freedom of spirit, I made my plans.

There was one thing, though. That tickle in my throat had continued. I could mostly forget it, but every now and then it would remind me that something was amiss. Then I started sounding like I had a frog in my throat. I had forgotten all about the “bellowing incident” and I kept trying to think what in the world was wrong with me. As is the custom with little children, they like the same book read over and over again, so I was reading that book to Ellie again and came to the bellowing page and was suddenly reminded of what had happened the last time. I was so relieved!!! I finally knew what was wrong with my voice. I was careful not to bellow a bit! And I told my sisters that night that I had finally found out what was wrong with my voice. It was actually funny to me at that point.

Friday morning. Raph and Regina were leaving early for her procedure. I had had a restless night with a bad tickle and some more coughing. I came down in the early morning hours before they left and said, “Do you have any home Covid tests? You know, with leaving tomorrow, I’m wondering if I shouldn’t at least check. I’m sure it isn’t, but in the off case that it is, I guess I shouldn’t fly.” They had one. Regina got it for me and they headed out to the hospital. I didn’t feel like taking it. I didn’t feel like doing anything. I felt grumpy and tired and old. Finally I bestirred myself and did the nasal swab, twirled it in the solution and dropped the mandated drops onto the test strip. I didn’t want to watch, but I couldn’t help seeing that the positive strip turned up before the liquid even reached the test point.

“Oh, no! Maybe that’s why you aren’t supposed to check it for 15 minutes,” I thought. “Maybe I have the strips mixed up and this first one is the control strip. Maybe, maybe, maybe . . .” There was no such maybe. The control strip colored up while the positive only got brighter and brighter. I willed myself not to keep checking it but the enormity of the fix I was in, and the weight of knowing that I had exposed this already vulnerable household to Covid, kept drawing me back to that little white strip sitting on a small ledge beside “my” chair.

It’s funny how things come into your mind at a time like this, but this verse from James kept running through my head, paraphrasing itself as it scrambled about.

James 4:13, NIV: Now listen, you who say, ‘Today or tomorrow we will go to Canton, Ohio, and spend a week there, thinking you are being such a big help! Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’

Well, I knew it was the Lord’s will for me to be there. I had prayed about it, and I was pretty certain He wanted me to go home after a week. But it was pretty plain He didn’t. It’s funny, looking back. I didn’t feel like God was punishing me or even scolding me. I almost felt like He was smiling, and telling me, “Daughter, your work in Ohio isn’t done yet. There are special days ahead. You will be glad that you had five extra days. Hold on, my child. It’s all good!”

And it truly was. The only one of the family who got Covid was little Ellie, and she only had one day of feeling bad. I masked up some, and the boys kept their distance, but when Ellie tested positive two days after me, I stopped worrying. I knew that anyone who was going to get it was truly going to get it from our little fireball. As it turned out, I was very grateful for the extra days. But the rest of the story is for another segment. Stay tuned!

I see that it has been over six weeks since I’ve updated this blog. Actually 45 days. There have been many days when I thought that I had to get on here and write everything that has been happening in our lives as a family, and in my life in particular, but there honestly never seemed to be time. There actually doesn’t seem to be time now, but it’s high time I let those of you who have been praying for our family have at least a little glimpse into our lives, and to give grateful praise for the promises that will never fail us. (The rest of you can listen in.) Because of the length of it, I’m going to write it in segments.

After writing that last blog, Deborah developed an infection on one side that has continued to give her trouble. For awhile, it looked like it was going to clear up with antibiotics and extra care. We were even given permission to take her to Ohio for the Yutzy reunion over the weekend of July 31st. Deborah was especially wanting to go because it was the weekend that we were also having her Aunt Lena’s memorial service. It was a lovely time! Deborah traveled out late and came back early and even though it was a stretch for her, she did well! She came back feeling pretty well, and when she saw the doctor that week, she was given permission to take her own showers and comb her own hair! We thought we were on a good track towards recovery. We were wrong.

Every time it looked like things were finally settling down, about the time that she finished a course of antibiotics, and we got hopeful, the next thing you know, here would come the swelling, increased pain, lots of drainage and the incision would start macerating and the stitches would come loose, creating more and more anxiety with each day. Last week her surgeon decided that more surgery was in order, and plans are for her to go back in and have that done this week on Friday, August 26th

Looking back, it would seem that we had enough to think about without adding a single thing to our emotional plates. Our daughter in law, Jessica, dealt with a major flare-up of her stomach disorder shortly before Deborah’s surgery, and that was on our minds as well, and even though it seemed like it was beginning to settle down, there was the ongoing concern for the residual pain left from the earlier damage. Into the middle of this, another issue raised its ugly head.

Our Ohio granddaughter, Ellie, had been dealing with sudden pain in her right leg for some time. She would suddenly stop almost mid-step and cry out and then sob while someone rubbed it for a bit, and then she would go back to being herself. She often walked with a limp, though, and even though it had been checked repeatedly, it was not thought to be anything serious. The hard part was that it would seem to disappear for a time, and then come back for a spell, and then quiet down again. This spring, it came back and seemed to intensify. There were numerous tests done, and it was decided that the lump that had been deemed a cyst needed to be checked out more thoroughly since it seemed that the pain was originating from that cyst. It was so small that the surgeon said that it would be just as invasive to do a biopsy as it would be to remove it and so he did just that. Following the surgery he said that it was a lipoma – nothing to worry about, they would send it to the lab, but he was sure that it was just a lipoma. The aftermath of that surgery was difficult. Ellie was in a lot of pain, and she couldn’t sleep. There was an exhausted, miserable little girl, and equally exhausted parents. A few days later the hospital called and said that they were unable to identify the lump, that they were going to send it to the Mayo Clinic to have it analyzed. They reassured Raph and Regina that they felt it was benign.

That weekend, the three grandsons came to Delaware for a week. What a week it was! This Grammy didn’t know if she was going or coming! Deborah, usually my right hand person when it comes to doing things with the grandsons, was not only incapacitated, she needed my help! Charis had just spent a week with Bontrager cousins and was rather peopled out, and it wasn’t feasible to have Christina help if Charis wasn’t here. There were various activities planned for the week for which Charis joined me and the boys, but Daniel was working and it was a very full week at First State Inspections so he was gone a LOT! Oh, we did things, alright:
I took them swimming in a neighbors beautiful inground pool. Twice or three times.
I took them to the Rehoboth Children’s Theater production of “Puss in Boots.” They were unimpressed. I loved it.
I took them to Bob Evans for lunch. They were keyed up. And I’m not used to the dinner topics of a girl and three boys ages 10. 11. 12 & 13. The Restaurant was short handed, and the wait did not wear well on the restless natives.
I took them to Chuckie Cheeses. They liked it. I didn’t. At least not much.
And then on Thursday, Certain Man took off work and took the three boys and me to Sight and Sound to see “David” and it was a grand time. On the way home, CM stopped and the boys and he played a couple of rounds of miniature golf (and I might have sat in the car with the A/C on and slept).
Friday was a bit of a catch up day for me. The rest of the family was coming in for the weekend and there was food to prepare and stuff to catch up, so I didn’t plan anything major for the boys. So they ran the golf cart and were on the computers and did young men kinds of things until their Uncle Rob and Auntie Rachel came and took over the entertaining until I got supper on.

Somewhere through that afternoon, we had a text from Raph:
“Is there anyway that we can get everyone together tonight? We have something we want to discuss with the family.”

And thus began another saga in the life of our family. Our four-year-old granddaughter, Elise Evelyn, had received a diagnosis on the “cyst, tumor, lipoma, benign (but unknown)” area in her right leg that had been excised the week before.

It was a Synovial Sarcoma.

https://youtu.be/IziBz0d5yOk