|Posted by sheri.roddy on July 10, 2015 at 7:00 PM||comments (1)|
I wish I wish with all my might ......
Eighteen (+) months since that day of uber uncertainty. Those months have been filled with super highs, deep ditch lows, but most of all tons of welcomed hum drum "just goin' through life" kind of days. We had a beautiful one year transplant anniversary party with 140 of our closest friends and family, a handful of college tours, cheer competitions, birthdays, anniversary's & a "Gotcha Day" celebration AT HOME. We've enjoyed quiet nights on our deck, long walks, mornings at the gym, Zumba classes, gigging with the band, Girl Scout Gold Award projects, AP tests, SAT's, ACT's, driving lessons, junior prom, lots and lots (and lots) of golf, good times with friends, a bunch of date nights for me & Joe, new additions to the family and a phenomenal family wedding. Normal, normal, normal! Did I mention normal?
During this time Chris and Joe continue to feel good and receive thumbs up reports from the peeps in Boston. Aside from regular annual physicals, Joe's time with nephrology is complete. Chris still goes for monthly labs and bi-monthly check ups. Yes, in Boston. A small price to pay for this new and beautiful life.
While we've been busy basking in the goodness of life our friends at Make-A-Wish have been busy preparing to fulfill Chris's wish. I truly believe that Chris chose this specific wish as much for him as for Joe. Tomorrow morning we are headed to the 2015 Major League Baseball All Star festivities. They have 4 incredible VIP days waiting in Cincinnati for the entire Roddy family! The only thing we've done for this trip is pack! Every ride, flight, accommodation, meal and activity has been planned and paid for. It's an exciting time.
Here's a little fun fact: And I apologize for bringing up old war stories. But last year on MLB All Star game day Chris and I had just returned from the vacation from hell. We set out for Cape Cod on July 5th and returned to Glen Rock on July 16th - game day. 99.9% of the trip was spent in the hospital and not the picturesque Cape we had planned for. We are NOT planning a repeat of last year!!!! I repeat! NO REPEATS!!!! However, Chris, Joe and Juliana are all on antibiotics as I type for upper respiratory/sinus stuff. And that's all I'm putting out there about that ...
This crazy blog helps me to remember the details of this journey of ours. That is exactly the reason for blogging this upcoming week. I want the 4 of us to be able to reflect back on this amazing gift that Make-Wish has in store for us. So stay tuned, my dear friends. I hope my typing fingers can keep up with the itinerary they have planned for us ...
|Posted by sheri.roddy on December 29, 2014 at 8:25 AM||comments (2)|
What a difference a year makes!
Last year at this time my dining room was packed with suitcases, duffle bags, blankets, sheets and pillows. The coolers were crammed with enough drinks and picking food to last a few days, shopping bags were loaded with electronics and their chargers, and a VERY special tote was carefully set aside as the final item to be put in the car - it held Chris's medications and medical supplies (not a small tote either). The future of my little family was down right frightening.
On January 1st the four of us piled into our Honda Odyssey and headed north to Boston, Massachusetts. Ready or not ... we were off! Fun fact you may or may not know about me -- I am a control freak and I'm ALWAYS the driver! We set out around noon on New Years Day and I managed to drive about 25 miles until the unimaginable happened. I pulled over and let Joe take the wheel.
We weren't 100% certain about anything when we piled into the car that day. We weren't positive that our housing situation would work out or how long we'd even be in Boston. The medical end of our journey was definitely far too much to comprehend. Words like dialysis, nephrectomy and transplant didn't make any sense to me. Over the years I read a lot about them but now it was my 13-year-old sons turn to face these horrible things head on. And it was up to me to guide him through it. It would be up to me to understand the terminology, learn about new medications and all of this while I cared for the two most important men in my life as they healed from a surgery I knew very little bit about. Combine those big bad things while living in an undetermined location for an undetermined amount of time while the most important girl in my life bounced back and forth between New Jersey and Boston. Whoa!!!! It was a lot! A REAL LOT!
Now it's confession time ... on this very morning last year (and for several days leading up to that dreaded day) my blood pressure was through the roof. In all honesty, I should have gotten myself to an emergency room with numbers like that, but it wasn't my turn. I was dealing with a very sick little boy that needed medical attention. His kidneys had completely failed and it was "go time" for him. Something we had anticipated for a long time but somehow it crept up on us. I needed to work out my own issues, and I'll be damned, it was worked out in a way I never expected.
The drive on that frigid New Year's Day was one of the most pivotal and miraculous experiences I've ever encountered. We pulled out of the driveway and my heart was beating through my chest. I white knuckled it up the Garden State Parkway and over the Tappan Zee Bridge. I could tell that my blood pressure was not where it should be. No, there wasn't traffic or nutty Jersey drivers on the road that day causing this. It was simply the anticipation of what we were about to enter in to. On numerous occasions that morning I had to remind myself to breathe. Once we entered the Merritt Parkway I thought my brain would explode right through the top of my head. I pulled over at the first rest stop and Joe and I exchanged seats without saying a word. He knew I was in rough shape. As I walked by Joe near the hood of our Honda Odyssey there was a song that entered my mind at that very moment -- "Jesus Take The Wheel" by Carrie Underwood. I knew that my thoughts and fears were only going to go away if I passed them along to a greater power. Within a half hour of sitting in pure silence in that front passenger seat I began to feel a sense of calm come over me. I've never felt anything like it before!!!! My conversation with God in that mini-van last year was intense. Seriously intense! I silently begged and pleaded for Him to watch over us. He obviously knew that the only way we would get through this was if I were in a better frame of mind. Thank God --- LITERALLY --- thank God! As I prayed I began to be able to breathe once again without the forceful deep sighs, the headache subsided, my racing heart slowed down and it was clear that Jesus had taken the wheel. My prayers were answered in a HUGE way. Right there on the Merritt Parkway, where I least expected it but when I needed it most. He delivered! I was finally, FINALLY, able to come to terms with the fact that we were headed to the "help" part of Chris's story. I needed to pass the baton onto God - the very one that would guide the hands and minds of the doctors and nurses that would heal my little boy. It was truly a life changing car ride!
The rest of this story has already been written and my guess is that most of you are fully aware of the happily ever after ending in this wild and crazy tale. The first half of 2014 was scary and unpredictable and the middle had its ups and downs. But this family will end 2014 on a high note. A VERY high note! Chris and Joe have never felt better. Our family is living a happy and normal life that we've never really known before. Sure, there are medications to take, certain precautions that need to be adhered to, and follow up appointments that still require a good amount of prayers beforehand. But isn't that "normal"? I'm sure a lot of you reading this take medication, have medical appointments and bow your head asking for a little help and guidance from God every now and again. If you happen to be asking Him for these things, can I recommend something? Don’t forget to thank Him when your happily ever after ending comes to fruition.
I end this post with a note of thanks (of course to God!), but to everyone that has provided my family with love, support, prayer and an enormous amount of encouragement throughout 2014. It was YOU! You, that guided me and gave me the strength to get through each and every one of the last 365 days.
May all of YOUR hopes and dreams come true in 2015 ...
|Posted by sheri.roddy on October 21, 2014 at 8:35 AM||comments (2)|
It's been a long long time since my last post. Happy to report that a NORMAL life has gotten in the way of blogging.
Back in August Chris and Joe had follow up appointments in Boston and they both did great! Joe was told he will need to see his nephrologist in a year. Chris had been struggling to keep his white count at a safe level but lately his numbers appear to be right where the doctors want them. Last week Chris and I were in Boston again for yet another follow up and this time they ran some more tests to check his bladder as well as the "hook ups". This is where they connected Joe's vessels to Chris's. This was ALL done through an hour and a half ultrasound and everything was perfect. Modern medicine continues to amaze me!
While we were up north for the boys check ups back in August we spent a few days in Rockport, Massachusetts. As I mentioned in my previous post, that's where Joe and I were the day Juliana was born in South Korea. We had a magnificent couple of days being a healthy family of four. It's literally been years since I could type those words. Chris had boundless energy that weekend.
Our trip began with a hike out at Halibut Point State Park which is a spot on this earth that God must have spent a little extra time on. It was breathtaking! A short hike through a wooded area lead to a stunning granite quarry and eventually to one of the prettiest shorelines I've ever seen. There were miles and miles of enormous flat rocks to climb with incredible tide pools wedged in between. It was neat to see the fishing and lobster boats hard at work just off the coast but nothing compared to watching my little family unit have the most fun we've had in years. I never would have guessed that Joe and I could recreate yet another magical weekend 16 years later in the exact same location. On our first trip to Rockport we were a young couple dreaming of having children. This trip was like the fairy tale ending of that dream we had in 1998.
It was an action packed weekend of long walks, hiking, mini golf, fabulous meals on the water, go-carting, a tour of the Salem Witch Museum, and overall fun! In past years we always needed to set aside some down time for Chris to rest. Not this trip! We started out about 9:00 a.m. everyday and ended around 11:00 p.m.. It was great!
After reading the Rockport Events Calendar online we decided to go to the fireworks display on Saturday night, August 9 (the day after Juliana's birthday). Joe & I had a plan and it worked out perfectly. We ventured down through the quaint town and headed toward the water of the seaside village where crowds gathered to wait for the fireworks to begin. We staked our territory on a large flat rock built for 4, watched the beautiful full moon rise over the water, listened to some local musicians and anxiously awaited the show. Timing was impeccable ... Joe and I looked at each other & knew that this was the moment to present Juliana with another birthday gift. We had already given her some things she had asked for (clothes, simple silver hoop earrings etc.). But these next gifts were the ones we were most excited about. I handed her a bag & told her we waited 16 years to give these to her. She was shocked when she opened the 4 journals I had written while we were waiting for her to come home from Korea. These were written directly TO HER and I felt that she was now mature enough to read through them and understand the journey we took to bring her home (and I'm not just referring to the travel end of it). Next was an amethyst ring Joe & I purchased from a jeweler while we were in Korea picking Juliana up. We purposely held onto it until her 16th birthday. Again, timing was impeccable! After the year we just encountered it was an absolute thrill to give her these special gifts and celebrate JULIANA OK SOO for an entire weekend! I will remember and cherish that weekend forever!!!! I know she loved and appreciated these gifts because it took her all of 15 seconds to take pictures of her new bling and forward them on to her friends. We scored big that night!
After a flawless weekend we toured Boston College with Juliana on that Monday, and on Tuesday 8/12 Chris & Joe had their thumbs up medical appointment appointments.
The remainder of our summer was quiet and uneventful. Chris continues to grow and adjust to this new life. He has WAY more energy, is definitely more focused, seems much more responsible and the change in him is obvious to everyone around him. Joe and I are still in awe. He is doing well in school, walks home and hangs out with his buddies almost daily, wakes up when he's supposed to for school, eats like a champ (I have the food bill to prove it) and seems genuinely happy. Since transplant Chris has grown a solid 4 inches and has gained a healthy 30 pounds.
Thanks to Joe and his idea to get Chris into a sport a little less taxing than baseball, he now has a new love ... golf. He's had a few lessons, practices at a local driving range, as well as in our garage into a net that Joe rigged up, and had even played a few real rounds of golf with Joe. I think driving the golf cart may be the highlight of these golf outings.
Life is certainly sweeter and we are all thoroughly enjoying this high. Joe has been playing a little more music and golf these days, Juliana is once again having a blast on the Glen Rock Cheerleading team as a "flyer" (yikes!), and has fully embraced the insane work load that comes with being a junior in high school. I have been busy babysitting, getting back into the swing of carting kids to and from school activities, and trying to lend a hand at church as often as possible. Recently our church hosted homeless families (which we've done for the past 4 years) and it was nice to be able to get involved again and make a difference.
This coming Sunday we will be walking in Central Park to support the Kidney and Urology Foundation in honor of Chris AND Joe! If you or someone you know is interested in joining us please let me know. It's an uplifting and inspirational day and something we look forward to every year. What a great feeling it will be on Sunday morning to walk in "celebration" in place of "hope".
|Posted by sheri.roddy on August 2, 2014 at 9:55 AM||comments (3)|
Doing our best to lay low lately. Chris looks good and feels good but his white count is struggling for the umpteenth time since transplant. The slightest brush with a semi sick person could mean another trip to the "H" word. He will repeat labs AGAIN on Monday. What else is new? I bet I type those words in every single post. Poor pin cushion of a kid.
On a happy note, in less than a week Juliana will turn 16. Sweet 16 is pretty accurate! She is undeniably one of the best things that's EVER happened to me and as her I mother I can attest to the fact that indeed she is a VERY sweet kid. Juliana's happy demeanor has kept our family perfectly balanced throughout these years of ups and downs.
It was 16 years ago this month that Joe and I ventured to unchartered territory on the recommendation of our social worker from the adoption agency. We spent a long weekend in a beautiful sea coast village in the northeast section of Massachusetts. A small town called Rockport. On the Saturday evening of our trip we had a wonderful champagne and lobster dinner in a fancy restaurant on the water (Joe & I didn't "do" fancy back then. We were scrambling to pay bills each month but this particular night was set aside as our "special" night out). We sat for hours enjoying the food and amazing atmosphere as we watched the biggest full moon rise from the horizon. We strolled on the beach that night for what seemed like hours. It was a night of perfection!
A little more than 3 months after the ultimate New England get away I was home from work not feeling well. I had been traveling a lot around that time and I think the schedule and airplane germs were finally catching up to me. I was lounging out on my couch (in the Hawthorne house) watching Oprah when the phone rang. It was our social worker from Holt International Adoption Agency. I remember that afternoon as if were yesterday. The voice on the other end of the phone blurted out, "it's a girl". There was a baby girl on this planet and she was all ours. Kim Ok Soo (who would later become Juliana Ok Soo Roddy) was born in South Korea on August 8th and she weighed 6 pounds 8 ounces. There would be forms to fill out, papers to sign and some more waiting to do, but SHE WAS OURS!!!!!! IT WAS A GIRL! I was a mom, Joe was a dad and this little precious girl had no idea the family that anxiously awaited her arrival: aunts, uncles, cousins, grandparents and great-grandparents! It was the overwhelmingly awesome news we had all waited such a long time for. There was no social media to turn to in 1998 so I found myself attached to the telephone for hours after that call from Janet the social worker. Joe of course was first, followed by my dad, sisters and grandparents. There was one call after another the night of November 18th. I was never so happy!
When Joe returned home from work that evening we just looked at each other in disbelief. Up until this point it was paper work, hopes and dreams. Now it was a reality. OUR DAUGHTER! I loved those words (and still do).
For the months leading up to this joyous day I kept a daily journal. These were written directly to Juliana. I wanted her to know how desperately we wanted her in our lives and it was important for me to tell her every last detail of our journey to bring her "home". Joe reminded me of my journals and we quickly thumbed through to see where we were on Saturday, August 8th 1998. It is with no mistake that God put us in one of the most beautiful seaside towns eating lobster, sipping champagne, and strolling alongside the crashing waves witnessing one of the largest moons shimmer over the ocean. Unbeknownst to us, that evening we were celebrating the birth of our very own daughter.
These are the stories they make movies out of. Gods plan and our very own non-fiction story. Amen to that!
We have a few things up our sleeves for the birthday celebration next week but given our track record I'm reluctant to share our plans just yet. There is a certain redhead we will need full cooperation from in order for these "plans" to come to fruition.
To be continued .....
|Posted by sheri.roddy on July 27, 2014 at 12:20 AM||comments (1)|
There are many nights I lay my head on my pillow and hear the sing songy voice of Ellen DeGeneres (aka Dory) "just keep swimming, just keep swimming" . I am ready to declare mercy and admit that there are days of late that I don't want to keep swimming! I want this complicated and unfair life of my sons to go away.
It's summertime and this little town of Glen Rock is swarming with kids on their bikes and skate boards. The pool is loaded with water logged kids begging their parents or friends to watch their next tricky move underwater. I love the awesome pictures on Facebook of friends kids at camp or on vacation, but quite frankly I am down right jealous. This year especially I am super tuned into these kids who are out and about living their simple, fun, sometimes over indulged, but happy, and more importantly, healthy lives. Watching them makes me wish that Chris could have that carefree, come home when it's dinner time kind of life. There are days I look at my handsome redhead and think of him as a 14 year old human clock. Everything is so timed: the medication, the doctor appointments, the bi-weekly lab draws. Damn kidney disease ruins everything! And it's just not fair!
Somehow whining in writing is somewhat therapeutic for me. But I'll stop now. I sincerely apologize that you weren't sent a formal invitation to my pity party. This has all been a little tough to take this summer. We really were looking forward to a relaxing, rejuvenating and recharging week away earlier this month and I just hate that it didn't happen for us. Was it silly for me to think that a few days of relocating to a spot with sand and salt water would make the past few months more palatable? The situation just frustrates the day lights out of me!!!!! (Yes, that was a 5 exclamation mark sentence!). And there's another.
Okay, so here is the latest and greatest in the medical life of Chris:
We received word last Friday (7/17) that the final results from Chris's tests for Lyme Disease came back negative. Apparently the first test was a false positive. This is a good news/bad news deal. Good it's not Lyme, but bad we STILL don't know what's causing these fevers. We never know if or when these fevers will reoccur. His mouth is much much better and he is back to gaining weight. However, since my last post he's had 2 lab draws and it appears his white count is dropping. We've adjust medication dosages once again, he will have labs repeated on Tuesday the 29th and we will take it from there. I've spent 14 years asking God for higher numbers, lower numbers, stable numbers. No wonder why this kids levels are all over the map; God can't keep up with my requests!
So here's the deal --- anything written in this post up to this point was composed earlier this week. This was during a time that I felt like our little family unit was stuck in the torture chamber of life. Since then, things are looking up and you'll notice that my alter ego has now taken over this iPad mini and she is ready to face life with a more positive outlook.
Although Chris's numbers indicate a low white count he definitely looks better and better with each passing day. I've said it before, and I'll say it again, "THANKS BE TO GOD!"
Yesterday Chris said he was feeling really good so I made a last minute decision to take the kids to the Jersey shore for the day. The 3 of us had a wonderful time! It was just such a treat for me to engage in silly uninterrupted conversation with my teenagers. I've got some pretty awesome kids and I just love being around them. They are funny, smart and I'm blessed beyond measure with these two characters. It is absolutely, positively no mistake that Juliana and Chris were the "meant to be" brother and sister. We hit a TON of traffic and the beach was mobbed, but it just didn't matter. We were healthy and together!
Joe got home a little early from work and the 4 of us headed over to 51 (my childhood house which is now Debbie & Tom's home in Rochelle Park). We had some pizza and watched fireworks from her backyard. It was a beautiful beautiful night and a flawless way to end the week!
|Posted by sheri.roddy on July 15, 2014 at 8:05 PM||comments (1)|
We still do not have the full results from the Lyme disease tests but they expect to have them in the next day or two. However, they felt comfortable discharging Chris today. Because Chris has been afebrile for 48+ hours, his white count (ANC) is up, he has been eating small amounts on his own, and the swelling on his face has gone down significantly, we were set free around 1:00 this afternoon.
But why would you think it would be that easy? Surely you jest!
I called the rental car place all set to have them deliver our wheels to the hospital and it turned out they would not allow me to rent a car with a debit card. Not even with a major credit card over the phone provided by Joe. I needed to physically HAND them the card and it HAD to be in my name. That was a bit of a problem because I haven't had a credit card in my name in 15 years. Our major credit card is in Joe's name and was safely tucked away in his wallet in NYC. Didn't do me much good in Boston. Guess I know what's on my "to do list" this week.
After desperate phone calls to every rental car dealer within a 20 mile radius of Boston I finally landed a car with Avis. Who, by the way, DOES accept debit cards.
Chris and I hailed a cab from the hospital and somehow hitched a ride wiith the chattiest driver in the northeast. Neither one of us were in the mood to hear the history of Boston, Mass. However, we responded with a lot of "ah-huh's" and "isn't that interesting" to the gentleman that was beyond proud to be a Bostonian. In all honesty, we just wanted to get our car and get home! I guess I should be thankful that he got us to the Avis center in downtown Boston in one piece. We retrieved our car without incident and the ride home was pretty uneventful. There were only one or two down pours along the way. I fully expected a lot worse given the forecast and emergency alerts I received on my phone.
Chris has resumed position in the throne playing XBox with his friends and seems to be feeling much better. He will stay on Augmentin until the powers that be figure out what the heck happened to this kid this time around. Jeesh! It truly never ends!!! I'll take him for repeat labs locally on Friday and he will need to go into NYC for a follow up with his nephrologist at Columbia next week.
This evening I will enjoy a little MLB All Star game from the comfort of my very own couch with my all time favorite libation in hand.
Again, I want to sincerely thank all of you for the strength you give me with each and every rough patch we hit.
|Posted by sheri.roddy on July 14, 2014 at 9:40 PM||comments (2)|
Chris's night nurse just came in and said that the preliminary test results came back and he tested positive for Lyme disease. What the heck?!?! I'm more than anxious to speak to the doctors in the morning now. This new information has me rather befuddled.
Today was definitely a much better day. Chris continues to remain fever free and he only had one dose of Oxycodone today. He is still on IV antibiotics, his mouth sore is still painful, but his cheek looks less swollen to me tonight. He ate a few bites of yogurt, mashed potato and macaroni and cheese today. However, it is not enough to constitute a meal or meals. I've got a lot of food pushing to do with this kid once again. He is down 8 pounds in 5 days --- not good.
At this point I have absolutely no clue what's next. If Chris DOES have Lyme disease I'm curious to know if the routine treatment of months of antibiotics is an option for Chris. So many questions! Headed to my window seat of a bed now. My head is spinning with questions. I hope I can turn it off.
|Posted by sheri.roddy on July 13, 2014 at 6:40 PM||comments (3)|
FUN FACT OF THE DAY: You can be seen by a dentist/oral surgeon on a Sunday in Boston Children's Hospital!
This morning Chris woke up in severe pain. The abscessed canker sore is getting worse. Unfortunately, there is not a lot they can do for it other than attempt to manage his pain and wait. And wait. And wait. We are waiting for his white count to go up so that the cells will finally draw their swords and begin to battle this big bad infection. This is sort of like watching paint dry, quite frankly.
For now, Chris remains on an IV antibiotic and Oxycodone. The concern this morning was that his face was still extremely swollen and his tooth was now hurting. They took him down to the oral surgeon and took some X-rays. It was determined that his teeth were fine and the infection did not spread into the jawbone or surrounding area. There is a dental laser treatment for canker sores but Chris's sore is so severe and deep into the tissue they didn't feel it would work for him.
Aside from watching my son suffer through this horrific mouth pain it kills me to hear him say he's hungry but can't eat. He forced himself to eat a tiny Dixie cup of chocolate ice cream. That's been the most amount of food he's eaten in three days. I'm back to worrying about his weight although the doctors are more concerned with his fluid intake at the moment. It's a fight to get him to meet his 2.5ml fluid minimum. Without that amount of fluid every day he will have one unhappy kidney and Lord knows we can't have that!
Chris has been fever free all day for the first time in over a week. I hope I'm not going to eat those typed words.
Tomorrow the hospital will once again come to life. The weekends around here are like a ghost town. Aside from the lack of food selection in the cafeteria on Saturdays and Sundays, I kind of enjoy the empty hallways, quicker elevators and serene garden experience.
There were no labs drawn today and there's nothing earth shattering to report. Chris and I are once again having a little quality time together --- compliments of the side effects of kidney disease and post transplant crappiness.
|Posted by sheri.roddy on July 12, 2014 at 11:20 PM||comments (3)|
WHAT I DID ON MY SUMMER VACATION
By: Sheri Roddy
Saturday morning, July 5th the plan was to wake up at 4:00 a.m., finish loading the car and be on the road by 5:00. I headed to the basement to get the last minute things from the dryer and noticed we had a flood. Apparently, someone had left the hot water in the sink running overnight in our first floor half bath (??? I know! What the heck?). Joe and I sopped up, vacuumed up and threw the fan on. We noticed that it was coming from the main sewer pipe. Given the time (5 a.m.) and day of week (Saturday), we opted to turn all the water to the house off, leave a fan drying and go on vacation. After all, it's been a VERY trying year and it was now OUR time to disappear from reality for a few well deserved days. We felt felt good with our decision to deal with this minor inconvenience upon our return from vacation.
It was now time to wake the cherubs so that they could climb in the car and fall back asleep for our 4+ hour car ride to the Cape. Juliana was up and about making sure that her earphones were packed and that the electronics she couldn't live a moment without were charged and ready for a week away. Chris is (and always has been) quite a bit slower in the getting ready department. His eyes tell you things like, "why do we have to leave so early?, this is stupid!, I wish Juliana wasn't so darn happy in the morning!, if you ask me to do one more thing, Mom, I might very well lose my mind!" Yup! Teenagers. They're quite something. And I have to constantly remind myself that I was 100 times worse than Juliana and Chris are.
While 3 out of the 4 of us were scurrying about trying to get out the door before the Saturday morning vacation traffic got too bad, I noticed Chris sitting at the kitchen table slouched over. When I asked if he was alright he said he didn't feel well. Alrighty then ... let the games begin, I thought. I took his temperature and it was a mild 99.1 - in our book that's pretty normal. So, in the car we went. Both kids were asleep within seconds of hitting the highway. This allowed Joe and I time to listen to "our" music and talk about the upcoming week of R&R we were about to encounter. The sky was blue, the traffic was non-existent, the coffee was made to perfection and life was good! So good that I had almost forgot about the morning flood.
It was about 2 hours into the ride and Chris woke up thirsty. As I glanced back I noticed he was wearing his fever eyes. ALL moms know the "fever eyes". I grabbed the thermometer from my bag (because every mom has a thermometer, medication list and blood pressure cuff in their bag at all times). Sure as heck it was over 103. Joe and I had to make a split minute decision whether or not we were going to veer left and go right to Boston or get off the exit for 495 and hit the Cape. We opted to head to the Cape and call Boston once we unloaded. Our cottage was tiny but perfect. It had everything our little family of 4 could possibly need and a view of the water to boot.
The renal fellow on call returned my call within seconds of me leaving her a message. Her suggestion was that we head to Cape Cod Hospital and have labs drawn and get Chris seen by a doctor. She called ahead with the orders and when we got there around 2:00 they were more than ready for us. It was quite obvious that the staff from this quaint seaside community hospital doesn't hear words like "pediatric transplant patient" too often. They were efficient, kind and accommodating. Chris was put in a fish bowl - actually it's an isolation room so that he doesn't catch any big bad hospital germs. Something told me that it was too late but we appreciated the special treatment and extra elbow room for my family of 4.
These transplant perks really are quite nice once in a while. While I'm on the topic of "perks", Joe received an interesting phone call while we were sitting in the fish bowl. It was Dan from the promotions department of the Red Sox. Joe's cousin was kind enough to give us Red Sox tickets for the Monday, July 7th game at 7:00. Joe thought it would be fun to call ahead and see if there was anything "special" they could do for Chris while we were at the game. Dan told Joe that the Red Sox would be happy to give all 4 of us a private tour of Fenway before the game. We were instructed to be at Gate D at 4:30 on Monday. We were all really excited but Joe was pretty over the top with the success of his master plan.
The four of us passed the time by reading, telling jokes and trying to divert Chris's attention away from the fact that he now had another hospital visit under his belt. We waited for Chris to have ultrasounds, X-rays and once again witnessed the misfortune of him getting an IV. They always stink! But he never complains. As time passed he was getting more and more anxious to get out of there. Around 7:30 the attending came in and told us that he had spoken to Boston Children's Hospital and they wanted him admitted up there because his white count was dangerously low. Numbers as low as they were put Chris at risk for rejection so time was of the essence. You could hear the disappointment as all 4 of us let out huge sighs of disbelief and frustration. But, we all knew what was best so we headed back to the cottage and packed a hospital bag fully aware of what this bag should consist of. It's a crying shame that we have this down to a science.
We all drove up to Boston together since we only had one car. Joe insisted on staying with Chris this time around. It was a 2+ hour car ride from Cape Cod to Boston. We pulled into the circular driveway at Children's and I had to say goodbye to both Joe and Chris. Fortunately they were ready for him so they walked right up to his home away from home on 10 South (the transplant unit). It wasn't an easy goodbye for me but I knew that Chris was in extremely capable hands. Juliana (my little rock) and I drove right back to the Cape and made great time since it was now 11:00 p.m. and there weren't as many cars on the road.
On Sunday Chris had lots of labs and was seen by numerous departments here at the hospital. When a kid has a fever of unknown origin (especially after transplant) they call in all the troops: nephrology, rheumatology, hematology & infectious disease. They immediately started giving Chris the Neupogen injections to help bring his white count up. He was fever free a good part of Sunday right on through to Monday. The doctors determined that Chris picked up another virus and his count was slowly coming back up. They were pleased with his progress and felt that we caught this one nice and early.
Every doctor and nurse involved with Chris's care was totally aware that we were on vacation and that we had these amazing plans at Fenway for that night. Joe made that well known! By late morning they agreed that he could be discharged so Juliana and I hopped in the car and headed back to Boston to meet up with the boys. When we got here they were still waiting on a few things. The clock was ticking and so was Joe's heart rate - only a lot faster than the clock. He was so anxious for this amazing opportunity to see one of the greatest ballparks in America. The paperwork was signed, they gave us our instructions (which consisted of giving Chris the daily Neupogen injections ourselves) and we had 25 minutes to walk 1 mile to Fenway with a kid that was JUST released from the hospital. I'm talking IV out one minute and on the streets of Boston the next.
Of course there was a glitch. We had one dose of Chris's medication that had to be kept refrigerated and a few needles to inject the medication. We didn't think bringing needles into Fenway was a really bright idea so now we were in the lobby trying to come up with a solution. Juliana & I ran into the CVS in the hospital lobby and grabbed a plastic cosmetic bag while Joe and Chris waited for a woman from the ER to come back with some ice for us. Once we safely packed the goods away Joe ran up to the 6th floor of the parking garage to put it in our car. The kids and I kept walking and Joe caught up with us several blocks away. We hoofed it the entire way but managed to make it to Gate D on Yawkey Way by our 4:30 scheduled time. Whew!!!! This was the epitome of 'mad dash'!!!
We were greeted by one of this earths kindest individuals. His name was Gus and he would be our tour guide for the evening. He was what they call an ambassador. He was a retired teacher living his dream of working at Fenway Park. He brought us right down to the field where we stood directly behind the players from the Red Sox during their batting practice. He told the kids exactly where to stand so that their chances of getting a foul ball would be greater. Within 2 minutes one rolled right to Juliana's feet. He told us facts about the park and while he was speaking I could tell that someone was frantically trying to reach me. My purse was vibrating like crazy. I finally picked up my phone and it was the hospital with a few last minute instructions about Chris's med changes. This was one wacky day and my head was absolutely spinning. Was I completely out of my bird cage to have taken my son from a hospital right to a ball park?!?!? How incompetent of me! I wasn't even sure I was hearing all of the instructions properly because I kept loosing the nurses words with every crack of the bat. Stress? What stress?
Gus gave us ample time to watch the players up close and personal but now it was time for the tour. Fenway is a must see for any baseball fan. It's incredibly nostalgic and the die hard fans are a hoot to watch. When we finally made it up to the Green Monster there was a flash of lightening that looked like it came from a block away. We were quickly escorted inside where we continued our tour. While we were inside you could see the clouds getting blacker and swirling in a very odd way. It was at that point that I heard someone say the word "tornado". Yup! Of course there was a tornado watch around the area of Boston! Of course, because the Roddy's were here!!! You CANNOT make this stuff up! Everyone was asked to go to the lower level of Fenway until the storm passed. Thankfully we were not swept away to Oz and the game was only delayed about a half hour or so. When it was time to take our seats we were pleasantly surprised that they were 6th row, on the 3rd base line, very close to home plate. A foul ball could have been lethal. We were so close I thought they'd ask us to suit up and put on a glove. It was awesome!
We only stayed until the 6th inning. It was starting to rain a little and Chris looked like he was fading fast. We made reservations at the Yawkey Family Inn (family housing close to the hospital - the Ronald McDonald House type of place). We knew it would be too late to return to the Cape and more importantly, Juliana had planned a tour of Northeastern University for the next morning. We arrived at the Yawkey and it took us about 3 minutes to fall asleep. What a day!
The next morning Joe and Juliana were up early and headed out for Northeastern. I let Chris sleep in since we didn't need to check out until 11:00 and I needed to wait around for a UPS package. Chris's medication for the injections was being overnighted to the Yawkey. I went online to track the package and noticed that they had a wrong address. While I was trying to sort this out, Joe called me frantic. He had just realized that he left his sunglasses at the bagel store up the block from the Yawkey. They are not CVS sunglasses either so he had every reason to be upset. I put my UPS dilemma aside and ran down the block in hopes of retrieving the lost specs. Thankfully someone turned them in and my mission was accomplished.
Now back to the UPS issue. After a lengthy phone conversation with the woman from UPS she was sympathetic to our urgency and she called the driver who had the package on his truck. Apparently the Yawkey was not on his route but he agreed to have me meet him on his route and he would hand it over. Right before he hung up he told the dispatcher to give me his cell number. Chris was awake by now and I was rushing him like crazy so that we could check out, go to the hospital and get the car, go pick up Juliana & Joe at Northeastern and try and find Mr. UPS. It was nuts. I called this chap when I was on Beacon Street and he told me he would wait at #1889. I won't get into all of the details but 45 minutes of driving up and down Beacon Street looking for the big brown truck and he finally told me he had made a mistake and he was at #1589 Beacon. That's only one number off but 300 buildings away. A UPS driver that has trouble with his numbers? Really???
Anyway, we tracked him down, received the goods and headed back to the Cape to resume our family vacation. Before we could dive into any vacation-like activities we had business to take care of. Chris needed his injection and he had agreed to let Joe give it. Joe was given instructions at the hospital and said he felt comfortable giving it. We prepared everything and before I knew it the deed was done and all was good. I couldn't have been more proud of my Roddy boys. Joe for giving it and Chris for the trust he had in my brave husband.
Once we regrouped, the kids took off on the bikes to go mini golfing. Joe and I sat at the beach with a few cold ones rehashing the first few days of our vacation. When the kids came back Chris started to complain about a canker sore in his mouth. These sores are a VERY common side effect from one of his medications. I had some topical medicine to give him and Tylenol ready to roll if he needed it.
The next day (Wednesday) Joe and I went for a nice long walk on the beach, had breakfast at the local cafe and waited for the kids to get up. They were exhausted so I was glad they were getting the rest they needed. We all decided to go on a bike ride to Woods Hole. One we had talked about for months. It was a beautiful day and the bike path between Falmouth and Woods Hole is breath taking. Chris seemed pretty miserable all day. The sore seemed to be getting worse.
So our deal with Boston was that we would take Chris back to Cape Cod Hospital on Thursday morning for labs. Chris and I got up early and did just that. I contacted Boston while we were sitting in the waiting room to see if there was something we could do for this monster canker sore. They prescribed Magic Mouthwash (a combination of Lidocaine, liquid Benadryl and a Maalox type of thing). It's just a rinse but it was supposed to give him some relief. After we returned from labs I noticed that Chris was getting more agitated and he was once again getting "fever eyes". I took his temperature and it was almost 103. This meant only one thing ... time to head back to Boston.
I quickly cleaned up the cottage, packed what I could and got our hospital bag ready. Somehow I knew that Chris and I wouldn't be returning to the Cape. We drove up and this time I stayed with Chris, and Joe and Juliana returned to the cottage. Chris's temperature was almost 105 when we arrived at Children's and the pain from his mouth sore was excruciating. The nurse attempted to start an IV but his veins were collapsing. It looked like a massacre had just taken place in triage room #6. This kid is tough but everyone has a breaking point. We arrived at 9:00 and we were in the ER until 1:30. It was a super busy night for them so things did not go as smooth as they had earlier in the week. No fast pass this time!
Chris received IV antibiotics and fluids throughout the night and was given Tylenol for the fever and Oxycodone for the pain. The next morning (Friday) the team came in and they were extremely concerned with his low white count. Even though Chris had been receiving the Neupogen injections for 5 days his number continued to plummet. The sore in his mouth had now caused the entire right cheek to swell and the fever was still not under control despite the IV antibiotics. Again, the troops were called in and my enigma of a son was the topic of conversation amongst the medical professionals here on 10 south. The huge concern was that Chris would start to reject his new kidney. That was, and is, the reason for all of the prayer requests.
Chris is under the microscope this time around. I don't think they'll be letting him out until they know that his white count is COMPLETELY under control. This is not to say that this won't happen again. These side effects do and can happen to newly transplanted patients. Chris is just one of those people that IF it MIGHT happen, it will.
Joe and Juliana packed up the cottage early this morning and headed back to New Jersey. I asked them please not to come. Chris has been one angry kid and keeps threatening to get up and leave here. He told me on Thursday night that the doctors had until Saturday to figure it out and that he was going home and NOBODY was going to stop him. If Joe and Juliana showed up, the goodbye would have been a nightmare. Although I would have killed to see them today, it was best for all parties involved that they just head home. A few doctors and nurses spoke to Chris today and he is in a much better frame of mind. He is a smart kid and completely understands that he needs to be monitored very closely or he will risk losing his new kidney. Therefore, late this afternoon he upped his threat to Monday at 4:00 p.m.. Guess the doctors better get busy.
Yesterday I received a pleasant surprise from my friend Lorraine. She texted to let me know that she was in the neighborhood visiting a college with her son. She and Cole stopped by to see us and it was a great visit! We never get visitors up here so the diversion during such a tense time was more than welcomed.
Today consisted of a change in antibiotic, a few visits from various doctors trying to figure out why Chris is getting these fevers, and pushing fluids. His mouth is so sore he hasn't eaten in 3 days. We started off okay and the fever was gone until around 4:00 this afternoon. It was just back up over 102 again so it's a little frustrating. Nah! It's a lot frustrating!!!
I'm quite relieved that my IPad is finally out from the bottom of my bag and that my thoughts are documented. There is no question that this week has been awful. Blogging is very therapeutic for me. Typing my daily thoughts into this little tablet during a stressful time like this really helps me to move onto the next day and deal with the challenges with a much clearer head. May sound crazy, but it works for me.
We believe in the power of prayer and know that Chris will heal and we will get through this nightmare of a chapter. It's just a little scary going through it. Your prayers and support are sort of like when someone turns the light on to let you know that the nightmare will be over soon and everything will be okay. Thank you for that.
|Posted by sheri.roddy on June 15, 2014 at 2:30 PM||comments (1)|
11 days since the last blog. That went fast. I've been trying to hang on tight to the final days of having a middle schooler. In September I will be the proud mom of two high school students. Whoa Nelly! That's mind boggling how quickly that happened! Of course this last year has really been a blur, but honestly? College hunting next year? C'mon!!!
Last Sunday Chris was confirmed. It was a beautiful day and we were surrounded by a small number of friends and family. It was an easy decision to keep this celebration low key. Our lives seem to turn on a dime so simple and small was necessary. Chris was delighted with how his day turned out. When we arrived at church a handful of his friends from confirmation class were there to sit by his side - literally. They even came up to the altar during the laying on of hands and joined in as Chris was blessed and officially confirmed by Pastor Bassett. It was tough to hold back the tears as I witnessed how many Chris Roddy supporters he has. From the friends and family that filled the pews, to our church family that congratulated Chris with the sincerest of smiles on their faces and tears in their eyes. They ALL knew what a special day this was for Chris. They've been by our sides for 14 years and understand the road that he has traveled to get to this point in his life.
During the church service I was pleasantly surprised --- actually down right shocked, when my long time friend Kathy and her daughter Shannon greeted me during the sharing of peace. You see, Kathy and her daughter live in Texas. I had absolutely no idea that she was coming. She learned that the day was going to finally happen and she booked a flight and came to share in our joy. Who does this!?!?! I am so so blessed with great friends in this world. My other dear friend, Jill, was Chris's confirmation sponsor. She took this roll very seriously and for that I am thankful.
Another interesting surprise I received during the church service was after the gospel was read. I followed along and certainly remember hearing that particular reading but I didn't give it a second thought. Once we sat down, Juliana turned to me with a tear in her eye and said, "Mom, I read that at Grandma's funeral in December". Coincidence?!?! Once again, I don't think so. There was no doubt in my mind that my mother-in-law was with us. She and many other Chris Roddy angels filled that sanctuary on June 8th.
The day after we celebrated, Chris and I packed our suitcase once more and headed back to Boston. We arrived on Monday afternoon and had dinner with Joe's cousin and her husband. Our meetings with Pete and Cecilia are always the highlight of our visits up there. They are expecting their first baby in late July and we can't wait.
Chris's appointment on Tuesday was okay. His white count continues to be quite low despite the medication adjustment. We will repeat labs once more next Tuesday. Cross your fingers.
This Father's Day weekend is a pretty emotional one for me. I kept trying to come up with that more than perfect gift for the more than perfect father of my children. Here it is Father's Day and I'm empty handed. Joe is a simple guy and appears to be simply content with his special weekend of just hanging out with his family. He keeps saying how he doesn't need any "things" to make his day special. He went to the driving range two mornings in a row, I've cooked all his favorite meals and Juliana is preparing to make him his favorite homemade peanut butter ice cream for dessert. We've done a lot of lounging on the deck, swinging in the hammock and small talk about how thankful we are for the life we share together.
This coming week we are excited to attend Chris's 8th grade Graduation (actually they call it a "moving up ceremony"). Whatever it is, we are sincerely thankful that he will be able to participate in this ceremony. He's had some pretty interesting middle school years. We are all ready for his next chapter.