"A Sketch of Jim (Partial)": Conclusion

This is the fourth and final installment in my grandmother's account of my father's childhood with hemophilia. I started transcribing her story back in 2008, but for some reason, I never finished this project. 

From the archives: 
A Treasure Unearthed
Part 1
Part 2
Part 3

Finally, finally, finally, here is the rest of Granny's written recollection. Jim, my father, has just survived a horrific head injury, which necessitated a trip to San Antonio for dangerous surgery...

After five days we went home but were told he was a true hemophiliac. He told us the history of the mother being the carrier, etc., and that the odds were against us. Most lived to be 7 years old, some 13 years of age, but they were experimenting and new things in the medical field accomplished all the time. We asked him about sending Jim to school as we knew we would be faced with the problem in a couple of years. He said to treat him as a normal child as much as posible and of course send him to school. He said unless we did, he would have a mental problem and perhaps I would, too. We had many restless days and finally came time to remove the bandages. They had used an elastic adhesive (elastoplast) and had not shaved his head, so it had to be cut loose with a razor blade. Finally all was removed and the would apparently was healed. Then our family doctor told me that Jim was a true hemophiliac and that he could never participate in any athletic games with other children, that he should never ride a tricycle or bicycle as other boys would do, or play football, baseball, or any such.

I had always dreamed of the day when I would have a boy that could run, play, have blue jeans with the knees worn out and dirty, and now I would have a son who could never do these things, so I must find something else. We would all love him with all that was within us. Our daughters were very dear and understanding. Our older daughter graduated from high school the year before Jim started to school and she then went to work as a bookkeeper and was able to help us and we shall always be indebted to her as she went beyond her responsibility to help us. Our younger daughter also worked on weekends and contributed to us as we were constantly drained of finances, but we were happy and firm believers in prayer and faith in God. Too many incidents happened that I cannot remember: bleeding from bladder, running and falling on floor, bruised and swollen areas on shins and elbows, all requiring blood.

When he was 7 years old, he started to school and had a few minor injuries, but the last day of school, someone ran into him and knocked out a loose front tooth. Days in the hospital followed with 10 transfusions to stop the bleeding. When he was in the fourth or fifth grade, he stumbled over a wire at school and hurt his left knee. Of course, it swelled and was very painful and the usual treatment. Because of pain his leg became bent at about a 45-degree angle. The doctor put him in traction for six weeks to straighten it, but with no success. So he said, "Mrs. McCoy, he will just have to be that way." But I told him it would be straight again if I had to do it myself some way. He then sent us to an orthopedic doctor in Corpus Christi. He put it in a cast from hip to ankle. Each week we made a trip to Corpus 90 miles and the doctor would cut a wedge out of the cast over the cap of the knee then press on it with his hands until Jimmie could not take it anymore. Then he would recast it. The next week the same, and finally after one year, his leg was straight, but he had to wear a long leg brace from hip through heel of his shoe. He was told he was always to wear this, but in seven years, he started driving the car and soon was able to walk without the brace. Needless, he had many painful experiences, but more determination and enthusiasm than any average person—one who loved life and one that was loved by the whole city.

His junior year in high school he had a backlash or jerk of head at school, and that night he became confused and finally had convulsions—bit his tongue, etc.—then went into a coma. He had hemorrhaged in his head behind his right ear plus the severe bleeding of the mouth from tongue. More blood, plasma, and then we were told of "antihemophiliac plasma" and it worked great on him. He spent three weeks in hospital but returned to school. He was the state treasurer of the library club and was later inducted into Honor Society. He graduated from high school and was Cum Laude. He has a God-given talent to sing and had been a member of a quartet for several years even before high school. He won several first place medals for solos as well as a quartet and also the music award at graduation. He also sang and directed the song "You'll Never Walk Alone," and many tears of joy were shed when he walked across to receive his diploma.

Then came college. He got a music scholarship to Southwest (Texas State) University in San Marcos, and after two years married a most wonderful, godly, sympathetic and patient girl. He went on and graduated with her companionship and care through other painful injuries.

That's where Granny's journal ends. Not long before my mother died, I found an old legal pad that appears to be the beginning of my father's memoirs. While his account is also unfinished, it does describe some of his experiences in adulthood. Stay tuned...

"A Sketch of Jim (Partial)": Part 3

I started transcribing my grandmother's account of my father's hemophilia waaaaay back in 2008. Back then, I was working from a color copy of Granny's steno pad. Recently, my uncle sent me the original notebook, which reminded me that I never finished typing up her priceless recollection of my father's health challenges.

So here, after a four-year intermission, is part 3 in my grandmother's words:

Then when he cut some teeth, he had to have small amounts of blood transfusions, and luckily my husband was able to give them. Often he ran into a door and would have a huge bruise (or internal bleeding) and required blood, then one day he fell and bumped his forehead and both eyes turned blue. He looked like a raccoon. We laughed and he laughed and then more blood—but as soon as the problem was over, he played and was an extremely happy child. Our daughters both sang and he especially liked them to sing to him, and of course, they delighted in that. They so loved him that one day I spanked him and they thought I would bruise him, that they sulked all day and would hardly speak to me. But I realized he must be punished or he would become a child that no one would love, so I spanked him in the God-given place and never did it bruise him.

My husband worked as a bookkeeper and we were having a hospital bill about every two months, so besides our baby having problems, we were told the house we rented was sold and we would have to move. As the war was in full force and two Army bases here, it was almost impossible so we moved to an upstairs apartment. Then one day I went up the outside stairs and Jim came running behind. He was four years old and just tall enough to hit his head on the corner of the banisters to the staircase and knocked a small hole in the crown of his head. I grabbed him and ran upstairs and applied cold compresses to his head and it stopped bleeding as far as I could tell, and when bedtime came, I put him to bed thinking all was well. About 2 a.m. I awoke for some unknown reason. I turned the light on and looked at Jim and he was bloody from his head to waist and as pale as the sheets. My husband jumped and called the doctor, and there was no answer. He was out of town. Horrors! What would we do? No one else knew his problem, and we were frantic. At every heartbeat the blood would spurt. Unless you have been told that a doctor would not see your baby who was bleeding to death because he was a hemophiliac, then you can't imagine the emptiness we felt that night. For months I had nightmares of this experience. My husband called the hospital. We were told to bring him over and a new doctor, whom we had never met, would see our baby. This doctor who had just moved to Victoria came and put a pressure bandage on the wound, then in an hour or so he had to be called back and change it again and he came each time it was necessary. In the morning my husband gave blood, my husband's sister, who also was the same type, gave blood, a postman gave blood, and my brother came 200 miles and gave blood, and then we could find no more. At that time we did not have blood banks, and it was difficult to get Type O RH negative blood. We were using plasma, but his RBC was so low, so after five days the doctor said he was sending us to a specialist in S.A. (San Antonio). Of course, with all the expenses, our resources were depleted. The doctor said everything was arranged to go on rapidly and they would be waiting for us there. I shall always remember and highly esteem this doctor for doing so many wonderful deeds for us, as he never failed to come each time he was called, day or night.

We arrived in S.A. and were met at the entrance there. My husband was taken off to give more blood, and my brother and I were left with the baby in his room while they prepared for surgery. They came and gave the boy a shot and he was crying and my brother was holding him and he had a convulsion. I had never seen anyone have a convulsion. I was frightened and knew he must be dead, but then he opened his eyes and I knew he was all right or at least alive. Then a nurse came in and took him away to the operating room. The doctor said, "Hold on, I will." I was overcome with grief, anxiety and fatigue. Then my husband walked in. He and my brother were horrid sights. Their shirts were bloody from shoulder to waist from handling the boy. Then we all wept and prayed as never before. A nurse came in, gave me a shot and put me to bed in the room. She did not say a word, just patted me on the back and held my hand for over an hour. We had called a minister whom we knew in S.A. to come, and soon after he came, the nurse left. Then after what seemed an eternity, the door opened and there was the doctor holding our boy, whose head was completely bandaged. He was awake and holding out his hands for us to take him, but the doctor said he must lie down in bed. He told us about the surgery-packing, etc. Again, I have nothing but praise for another doctor who had done so much for us and had never seen us before. He said, "I don't know about your finances, but it doesn't matter as you need a private duty nurse tonight" as he needed constant professional care. After three days and nights with only winks of sleep, I went to bed next to our baby's bed, and I did sleep spasmodically. My husband and brother went to a hotel nearby. The next morning, the bandages still were snowy white. It was a beautiful sight to behold. The sun was shining in, and it was the dawn of a new day.

To be continued...

The story of the journal is here in this post from 2008. Back in those ’08 archives, you'll also find Part 1 and Part 2. In February 2013, I finally posted the conclusion.

"A Sketch of Jim (Partial)": Part 2

My grandmother's account of my father's health continues. At the end of Part 1, my dad's doctor had just informed the family that their baby might be a "bleeder." In this part, Granny describes an accident eerily similar to Ryan's accident two days ago but with far worse consequences. What a difference 65 years can make! I can't imagine a world without pediatric hematologists, blood banks and clotting factor.

Continued from Part 1

He began to overcome this, though, and was soon running around in the house, cast and all. Then all went well except for several bruises that were minor until he was about 18 months old. I had gone shopping and left him with my girls and a sister-in-law. When I returned, they ran out to tell me the baby (Jim) had fallen and hurt his mouth. When I examined him, I found he had knocked one of his front teeth loose. Still not understanding our problem, we treated him as any other mother would their child, but by the next morning, he would not play and was pale as could be, and then he started vomiting blood. I took him immediately to the doctor, and as soon as he saw him, he called my husband and told him to meet us at the hospital. We went there and they typed and crossmatched the blood of my husband, me, and our son. Fortunately the father and son were of the same type blood and were compatible.

Our doctor worked for what seemed like hours and had difficulty giving the blood as our baby was pale and weak but still had fight in him. Finally the doctor left and in a few minutes returned and finally completed the blood transfusion. Then our son went to sleep. Later the doctor returned and told us to keep him real quiet. Then he said, "I left a while ago and went in a little room and prayed that I would get the blood in him." Then he said there would be many more such episodes.

He was my son, I had brought him into the world, and with help of so many who were so interested in him, that surely I could be strong, too. He was a pretty and very sweet and lovable baby. My husband's family lived here in the same city, and of course were very attentive and helpful. Our neighbors all were interested and at the church we attended, everyone was thoughtful, helpful and offered assistance, even gave of their blood.

To be continued...

Edited to add the other "Sketch of Jim" entries:

A Treasure Unearthed

Part 1

Part 3

Conclusion

What we didn't know.

We knew we were heading to our small group meeting tonight. We didn't know we'd be going from there to the ER at Cook.

At 7:30 I picked up Ryan from his youth activity at the church building and headed back to our regular small group's meeting spot down the street. The kids played hide-and-seek while we watched the Cowboys in all their high-def glory. Then Katie interrupted.

"Ryan's bleeding."

We knew we should head downstairs immediately. We didn't know just how much blood I'd find in that bathroom sink once I got there.

It took a while to get the full account, but in their intense game, Ryan had jumped from a fence to a stone wall. He tripped off the wall and fell onto the ground below—a drop of about 4 feet.

By the time he and six kids made it back inside the house, it was obvious he needed medical attention. He had a cut above his lip and a scratch across his nose, his lip was cut and bloody, and a tooth was way loose. Add to that the fact that today was not a "factor day," and we knew we'd be checking with the hematologist on call. (He infuses clotting factor every other day, so his last dose had been yesterday morning. His factor level decreases over the 48 hours between infusions, so it was pretty low when he fell.) And his glasses? Toast!

We knew we're beyond blessed to live so close to Cook Children's. We didn't know that an ER trip could go so well.

The hematologist (who's not Ryan's regular specialist) felt we should get a CT just to be on the safe side. He had informed the ER that we were on our way, so Ryan was in the waiting room for less than 2 minutes. Of course, Ryan was a trooper as his vitals were taken and as people kept asking what had happened. He was so brave as they started his IV even though his face HURT, especially that loose tooth. And when it was time for the CT scan, he handled it calmly and with maturity (even as Mom and Dad stood there stylin' in our neon '80s splattered radiation shields).

The news was all good: CT looked normal, the nose cut was really just a scratch, and the cut above his lip could be closed with glue instead of stitches. That tooth was still a bother, and since Ryan was pumped full of factor, the ER doctor suggested we go ahead and pull it—which he did. Every step of the way, we were impressed with the staff's professionalism, courtesy and efficiency. Unbelievable.

We knew Ryan's a cool kid. We didn't know he could be so funny under pressure.

Ryan was obviously uncomfortable, but he handled the situation as well as anybody could've. As we walked to the treatment area, he noticed how much the scene resembled the set of Scrubs. A few times he had gauze in his mouth, so he communicated by "writing" on the bedsheet. He maintained composure as the doctor pulled his tooth, quickly reminding us that the tooth fairy pays $2 these days.

A couple of times Brett lightened the mood with silly comments, but Ryan had the line of the night. When Brett was singing his favorite movie song (in a ridiculous voice, of course), Ryan said, "Please! I'm in enough pain already!"

We knew we have awesome friends. We didn't know how blazingly fast they could be to respond to our needs.

Our friends the Ws quickly volunteered to keep Katie there at their house so Brett and I could both take Ryan to Cook. When we returned to pick Katie up, she was cozy as could be in borrowed PJs! It meant the world to us that we could both go with Ryan to the hospital and know Katie was in excellent hands.

I'd never really used Facebook as a prayer hotline, but that's what it became! Within seconds of posting a status update as we drove to the hospital, we heard from folks who were praying at that very minute. Awesome.

We thank God for protecting Ryan and for sending us the people who helped us get through this crazy night!

So here's Ryan after we got home:

And that tooth?

Ka-CHING!!!

"A Sketch of Jim (Partial)": Part 1.

Granny begins my dad's story with his birth in 1942:

We were a happy couple with two girls who were anxiously awaiting the new addition to our family. On Sunday afternoon we were blessed with a little boy, and we were especially happy since we had the two little girls age 11 and 7 years.

When our baby was 3 days old, our doctor said he would circumcise him as we had wished. Then that night after my husband left the hospital for home, my doctor came in and said he needed a little blood for my baby. I became very much alarmed and had the nurse call my husband to return. After he was there a while, the doctor came in and closed the door and told my husband and me that he had spent the afternoon there with our boy and now needed blood as he was bleeding. He thought he would be all right now.

In five days we returned home and that afternoon, my husband took the baby back to the hospital because of more bleeding. That was the beginning of many anxious trials, however we were not told then of the seriousness of the problem or what to expect. Being a baby in the house after several years, he was never alone and at every cry was instantly tended to, but despite this, he was a good baby.

When he was a year old he began to walk, and one day one of his legs, I forget which, began to swell, especially in the knee joint. Our doctor made tests, X-rays and found nothing wrong, so he put his leg in a cast from thigh to foot, and then in about six weeks, he removed it. On the way home, he was standing in the car seat and suddenly bent his leg and started screaming. I returned to the doctor and he recast it, except this time we noticed he became very pale and at times somewhat more listless. Then the doctor told us he thought he was a bleeder...

Edited to add the other "Sketch of Jim" entries:

A Treasure Unearthed

Part 2

Part 3

Conclusion

A treasure unearthed.

My mom visited my aunt and uncle over the weekend. She expected to have a nice visit; what she didn't expect was this:

My aunt found one of my grandmother's notepads when going through Granny's stuff recently. In this particular notebook, Granny had written an account of my father's health, from the first inklings that something was wrong to his hemophilia diagnosis to his injuries and hospital stays. Neither my mom nor I ever knew this journal existed. We were floored to read my grandmother's 16-page account of my father's childhood. Details we'd forgotten, stories we'd never heard: all in there, all told in Granny's unmistakable voice.

My aunt gave my mom two crystal clear copies, so I now have one in my possession. I read my copy right after Mom gave it to me at lunch Sunday. Of course, I cried like a baby. Although I'd never really thought about it, I shared a bond with my grandmother; she and I both had sons with hemophilia. But more than ever, I realize how very blessed we are that medical advances have made hemophilia so much easier to live with. She raised my dad in a world without hematologists, blood banks or 911. Her strength and resolve in the face of great trials are palpable in these pages.

Even if the subject matter hadn't been so dear, this journal would still be priceless. How wonderful it is to see her handwriting again! How awesome to discover her thought process, to notice the words she crossed out and rewrote! So add to that the fact that she documented these physical trials my father endured, and this account is off-the-charts FANTASTIC! I'm so thankful my aunt found this, and I'm beyond thankful that Granny wrote it in the first place.

And that, my friends, is WHY WE BLOG. Sure, sometimes I skip over the painful stuff, and yes, there are certain subjects that will never hit the web. And while I try to document the special events, surely there's some value to the everyday occurrences, too, the mundane details that in total make up our lives.

In the next few days, I'll share some excerpts from "A Sketch of Jim (Partial)." I want to give Ryan and Katie a chance to finish reading it. The kids were pretty young when Granny died, but they definitely remember her. I have a hunch that thanks to this legacy, they'll have a much better picture of what an amazing woman their great-grandmother was.

Edited to add the journal entries:

Part 1

Part 2
Part 3

Conclusion

Got a minute?

Do you know your lifetime insurance cap—you know, the maximum amount your insurance company will pay before it drops your coverage? Many people don't even know what their caps are because they're unlikely to reach them. For most, a $1 million cap seems pretty far off, but for people with chronic conditions like hemophilia, that cap could be reached within their lifetimes. Some kids reach them even before adulthood.

I'm blessed to have medical insurance with no lifetime cap—a rare commodity! It's a good thing I like my job because financially, it would be hard to justify leaving my district simply because we don't have a lifetime cap! However, there are many others who must live in fear of hitting their caps and losing their coverage. They have to make treatment decisions and career choices with that looming roadblock in mind. And that's where the Health Insurance Coverage Protection Act comes in—and you, if you so choose!

Congress is considering bills to adjust the minimum lifetime cap to adjust for inflation. Medical costs have risen exponentially, so the minimum cap (first set by many insurance companies in the '70s) would be raised to $10 million.

Read more about the bill here.

The National Hemophilia Foundation has set up an easy way to send your U.S. senators and your representative an email to let them know you support this bill. It only takes a minute, but the cumulative impact of these emails could make this happen.

Write your senators.

Write your representative.

(You may want to modify the email text if you or a family member does not have hemophilia. You can always change it to "my friend" because you know a family affected by that bleeding disorder! And yes, personal calls and letters are more effective than mass emails, but we'll take what we can get!)

Questions about hemophilia? Click here.

I don't blog about hemophilia much because I've been asked not to, and for the last four years, we've been blessed to live without the worst complications of that chronic bleeding disorder. We try to minimize its presence in our lives as much as possible, keeping it in the background. But it's always there, and we can never forget that for many families, complications and financial issues keep hemophilia in the forefront of their lives. For their sakes more than ours, please take a minute to click on those links and lend a hand. Thanks.

And while you're at it, please pray for a cure.

I feel the need...

...the need for SPEED!

Today we attended our local hemophilia association's annual meeting. For the last several years, the meeting's been at Hurricane Harbor or at a Rangers game, and usually on the same day as the children's musical performance. That scheduling conflict has kept us from attending lately, but this year we were glad to have the date free. This year's meeting was at Texas Motor Speedway! We're not NASCAR people, but we were still glad to check out the behemoth that's just up the interstate from us.

We spent most of our afternoon at the Speedway Club, which overlooks the track:After our arrival, the kids enjoyed gathering freebies from the vendors. Several drug companies and home health care agencies were there with pens, candy, educational materials and toys. The kids really raked in the goodies!
Then they were off to the children's program downstairs. They talked about hemophilia and spent most of their time making their own race cars. Meanwhile, back in the meeting, we heard what the local chapter was up to and learned how to be better advocates for hemophilia patients. Brett and I also attended a break-out session about infusions and heard from other parents about how venous access is working in their homes. It's always good to share stories with other parents since it's so rare for us to talk to anybody who's familiar with this world of factor, syringes and butterfly needles.

After four hours of being separated from the kids, we were all reunited for the fajita dinner. After the meal, we got to see the kids' race cars:

The kids also got their first good look at the track below us:
At long last, that part of our day was over! We stopped for a quick self-portrait in the marble on our way out before heading to the track.
Then we were off to the races (or the pace cars, at least):

WOW, was that cool! We made two laps around the oval at 100 mph, stopping once to feel the steep bank of the first turn. It was over before we could blink, but it was an awesome experience!

In the news.

A friend sent me this link because it's about her friend's grandson. It's yet another reminder of how blessed we are that Ryan "just" has hemophilia--and that we knew his diagnosis before he was born.

USA Today article

(The hemophilia Q&A sidebar is pretty informative, too.)

We'll be praying for Lance's full recovery!

The Ryan White Story.

Tonight, Ryan and I watched the TV movie about the kid who gave Ryan his name. My old VHS tape of The Ryan White Story, recorded from the 1990 broadcast while I was still living in Austin, isn't in the best shape. The sound is a little garbled at times, and the picture isn't exactly HD. But the story? Wow.

Four months before our Ryan was born, we learned of his hemophilia. Soon after that, B and I decided that our son should carry the names of two heroes with that blood disorder. For years we've told Ryan the story. My dad's first name is Ryan's middle name, and there's not enough bandwidth in all the internet for me to explain what Daddy meant (and still means) to me. But I can try to explain why we chose to name our son after Ryan White, and from time to time, I need to retell his story.

Ryan White was a kid with hemophilia, which means his frequent bleeds required frequent factor infusions. (Sound familiar?) Then, in the mid-'80s, the factor that stopped his bleeds gave him HIV, thanks to the tainted blood products used to create clotting factor in those days. (Our factor now is recombinant, so it's infinitely safer. It isn't derived from human blood.) That's when Ryan's story becomes almost super-human. Watching the movie again tonight, I was reminded of just how much Ryan had to face. Already overwhelmed with the devastating diagnosis, Ryan, his mom, Jeanne, and his sister, Andrea, had to deal with thinly veiled fear and, in some cases, outright hatred from their neighbors. When the school district barred him from attending school, he fought the system and the townspeople's discrimination. And he won.

Ryan and his family eventually ended up in another Indiana community, one that welcomed them to their town and supported Ryan's wish to go to school. Ryan's fighting spirit drew the attention of many famous people, and he was invited to speak before Congress and countless AIDS organizations. By the time he died at 18, he had done more than almost anyone to educate the public about AIDS and how it is--and isn't--transmitted. And he had shown so many people the honorable and graceful way to face adversity.

So tonight, for the first time, my Ryan watched the famous Ryan's story on TV. Parts of the movie are tough to watch because the White family endured some devastating events, but through it all, Ryan is portrayed as a caring, gentle boy. My Ryan couldn't help but notice this. "He's just so sweet," he said.

And there it is. There's the resemblance. I can see that my Ryan is not just a namesake. In his thin frame he carries more strength than many grown men. Even when he's dealt the most unfair hand, he continues to put others first. Anyone who's met him knows how sweet he is, but beneath that gentle personality is a fighter who is TOUGH.

Just like Ryan White.

OKC is OK.

This week R spent five days at Camp Impact on the Oklahoma Christian University campus in Edmond. Because the camp director wanted a parent to oversee R's factor infusions, K and I spent a few days in Oklahoma, too. R left the church building right after second service Sunday, and K and I hit 35 Monday right after lunch. Our first stop was at the camp to deliver a friend's left-behind backpack. It was strange to see all these kids from church out of their usual environment, but it was so good to see R and his buddies having a good time.

After that, K and I checked into our hotel in Oklahoma City and then went to Cracker Barrel for supper. K enjoyed the IQ tester at our table...

as well as the giant lollipop she bought from the Cracker Barrel store.

After dinner we headed back to our hotel and swam in the indoor pool (TOO COLD!) and soaked in the hot tub (JUST RIGHT!).

Tuesday morning we woke up early to head back to Edmond for the factor infusion. Of course, R's an infusing pro so that was easy. After we walked R from the nursing station back to the dining hall to join his fellow campers, K and I had the rest of the day free to sightsee.

Our first stop was the Oklahoma City National Memorial. It was remarkably moving. It was so moving that I'm going to give that part of our trip its own entry later. Just WOW.

After that we found a mall with a Build-a-Bear Workshop in it. K has had a giftcard and I've had discount cards for that place since her birthday party at our Fort Worth BABW last October, so I figured this "just the girls" trip was the perfect time to redeem them. So may I introduce Dirk Noweisski (my creation) and Kesey (K's):

After a quick pit stop at our hotel, we again hit the streets of OKC, this time to see Bricktown. Bricktown is the old warehouse district that's been renovated to include a bunch of restaurants and the big draw, a canal a la the San Antonio Riverwalk. Of course, we had to ride a canal boat!

Our boat captain told about the history of Bricktown and about the sales tax OKC citizens had voted on to pay for improvements all over the city. He also pointed out the corporate headquarters of probably the best Cherry Diet Coke and Cheddar Pepper provider in the world:

The Sonic building is right there along the canal. Before the day was up, K and I ate supper at the nearby Sonic cafe--one of the indoor Sonics where customers order from their booths by picking up a phone. Fun stuff!

Farther along the canal we saw the first of what will eventually be several statues to depict the great Oklahoma land rush.

The statues were impressive and all, but I couldn't stop thinking about how the sooners got their name. They were basically land thieves! They started staking their claims sooner than they were supposed to! Gotta love that.

Along the canal are several restaurants, including Toby Keith's I Love This Bar and Grill, a movie theatre, and Bass Pro Shops. The area is also home to the Bricktown Ballpark where the Oklahoma Redhawks play.

The Redhawks are a triple-A minor league baseball team affiliated with the Rangers. K was up for a game, so we headed to the ticket booth. Turns out Tuesdays are two-fer days at the park, and with a Coke can, we could get two-for-one admission. A quick trip to a convenience store and 75 cents later, we had our Coke can and could buy two prime seats for $11. Not bad! We ended up being between home plate and the home dugout to watch the Redhawks take on the Round Rock Express.

The free thundersticks they were giving out helped K get in the mood:

The two-for-one soft drinks were a nice surprise, too. Four bucks got us two big drinks in the souvenir cups. What a deal! We both got into the game and were--believe it or not--disappointed when Oklahoma lost 2-1. (That may be the ONLY time you'll ever hear me say that!) I've always heard that minor league clubs try to generate excitement at their games, and now I know it's true! Every half-inning had some kind of crazy race or silly stunt. It made for a great evening, even if we were surrounded by a jillion fans in OU T-shirts and hats.

After the game, K wanted one more boat ride, so we hit the canal for a third time. The captain of our second cruise had suggested we take advantage of our all-day wristbands and come back after dark, and we were glad we did!

The lights were pretty, and we got to hear what a third captain had to say about the canal and OKC. By the time our ride was finished, it was getting late. We quickly drove past the memorial again just to see the chairs lit up, but then it was time for bed.

Wednesday morning at camp was a repeat of Tuesday, but this time, we had to say goodbye to R. Of course, knowing we'd see him back home the next afternoon made for a pretty easy farewell! Anyway, we did factor again, and again, he did a great job. (Notice K's "delight" at this part of our trip!)

After the infusion, K and I loaded up and headed home. We ate lunch in Ardmore at Mazzio's Pizza, which brought back memories of many a Friday night in Tyler after the high school football games. We were thrilled to get home before 2 that afternoon to see B/Daddy and give him a great big hug!

I have to admit that I was surprised by all the fun things we found to do in OKC. That OU paperclip symbol sure seemed to be everywhere, and one radio station played Boomer Sooner for no apparent reason. But beyond that, OKC has plenty to offer! We had several other places we would've loved to visit if we'd just had a little more time.

The next day R was home, too, so we celebrated the reunion of our Fantastic Four!

A lovely Saturday already

I woke up first, around 7, grabbed a Diet Coke, slipped on my sandals, found my book (Where or When, Anita Shreve), and headed outside. After feeding our hungry kitties, I meandered to the swing to read.

B, R and K ended up going to find garage sales and donuts. They just made it back home. The garage sale run was a bust, but they did find some good grub at Got Donut (my favorite donut store name--and not a bad donut!). We just finished eating, and already it's a lovely Saturday. And it's not even 9 yet!

B made the comment that a morning without factor just seems so free, so open. A Saturday morning without factor seems downright decadent.

Whew

Our hemophilia nurse called and said we were exactly right to treat the "bleed" the way we did. Since R's arm seems fine now, we wonder if it ever was a bleed! In any case, we're relieved that for now, at least, we're still doing factor every other day.

Another reason that's good news: R is really stressing out over every infusion. He gets everything set up, but when it's time to stick, he starts to panic. Sometimes he'll put the needle right up to his skin, just millimeters from it, and have to back up and start over. For Wednesday's infusion, he got a bubble (lost the vein, which means the factor goes under the skin instead of into the bloodstream). This led to a big meltdown. He gets so frustrated sometimes, and we can't blame him! We start our positive talk (how wonderful it is to have factor, how we know he can get through his), and eventually he dries his eyes and is good to go. As soon as he gets a good stick, R's mood brightens completely. The sun is shining, the birds are singing, and all is right with the world.

All infusions aren't quite so dramatic. On some days, like today, he hits the vein in one stick, the factor goes in smoothly, and the whole process is no more stressful than brushing teeth. (But don't get me starting about how R and K feel about brushing their teeth!)

School's Out!

Memorial Day 2006. We made it to summer! Because we're hosting some of our family for a cook-out today, we get up early to start cleaning the house. Then R_Dub, our 9-year-old, comes in the kitchen, holding his right arm at a funny angle.

"My arm hurts."

B_Dub and I take a look, and yep, it looks like a bleed. The bicep's swollen. It's not huge; it's not hot. It is swollen, though, and since our h/o nurse told us to be wary of any changes, I call the hospital. Because of the holiday, our hematologist isn't on call. The doctor who does speak to us tells us to go ahead with today's scheduled infusion and call the clinic in the morning. Gee, thanks. Why didn't I think to treat a bleed with factor? Ugh. We'd been told to notify them if we had any problems, but when I do, I feel stupid.

So R gets his factor and spends the rest of the day swimming, eating, playing with cousins, performing for grandparents. His arm isn't bugging him, and except for the time when K_Dub, his 8-year-old sister, socks him in the pool, the bleed is forgotten for the day. But tomorrow looms, and I'll have to call and follow up on this scary development.

The blasted inhibitor that turned our lives upside down in October of 2004 returned this March. This time around we aggressively attacked it with high doses of factor 8, and the level (which was never too terribly high) returned to zero within a few weeks. Part of our aggressive attack was to do infusions daily instead of every other day, but we were told that would be for just one month. After 10 weeks of the daily routine, we FINALLY got the go-ahead to drop back down to every other day. Just in time for summer, we thought.

We've been on our every-other-day routine for a week and a half, and R gets a bleed.

So what? Why does this matter? Why get bummed about an added 20 minutes of procedure on alternating days? We are so very grateful to have factor in the first place. Our kid is in great health, active as he wants to be. Still, the thought of returning to daily factor haunts me. The best I can figure, it boils down to this:

• Having a day off from factor helps to ward off the drudgery of the routine.
• To get the super-high dose of factor, R has to get four boxes' worth of factor. Each box is 2"x2"x1". When we have a month's supply of factor in our house, about a third of our fridge is consumed by those boxes.
• When R goes to camp later in June, I may have to be there every morning to oversee his infusions (as opposed to two mornings in the middle of the week). It wouldn't be such a big deal if K had a place to be that week. I can't bear the thought of leaving her here with B (who'll be working from home) while big brother's having fun with all of his church friends.
• When we take our big vacation in July, we're looking at transporting gobs of factor, which has to stay refrigerated. I've already been trying to wrap my head around those logistics, and now we may have to double the amount of factor we'll have with us.

So maybe everything's fine. Maybe the swollen arm is nothing. Or maybe we just need to give up the hope that we can go one day in a row without factor.