We took a quick trip to the infusion center today to check on Johnny's previously critical Calcium level. Good news! Perfectly Normal. Thank you, Lord! The Aredia did its job and drew the calcium back into the bones where it belongs!
While we were waiting for the results, they loaded him with a litre of fluids . . . Never hurts! He told the nurse that his only complaint was that his stomach was hurting a little bit. So, while the fluids went in, they gave him anti-nausea meds through the port as well.
The tummy troubles continue to plague him. There is such a fragile balance between his fluid levels and constipation as they both relate to amounts and types of medicine he is taking. Before you know it, it has been four or five days since he has had a good poop. Arrghh! So, we are walking a tight rope with his fluid levels (although labs today showed he wasn't dehydrated) and still have to deal with the poopin' issue. He has stayed very quiet all day as we've been working on getting things moving along in the GI tract.
Johnny will have a CT of his chest, abdomen, and pelvis on Thursday. This will determine if there has been any advancement of the disease, if things have stabilized, or if he has been the recipient of the miracle for which I have prayed for months. Even if the scans look bad, I don't plan on stopping my Miracle Prayer any time soon. Have you ever met anyone more Miracle Worthy? Me, either.
In other Brawley news: Jake is sporting a mouth full of metal! He got his braces today and has quite the sore mouth tonight. He was not happy that I made his appointment for 8 a.m. I don't think he has seen 8 a.m. since school let out. However, since he was so tired he actually SLEPT through getting his braces on. The orthodontist said that was a first! He came home and slept most of the day away and is now raring to go. He'll be up all night, no doubt.
Many thanks to all of those who contiune to pray for and provide for my family. There is so much good in this world.
Tuesday, July 27, 2010
Saturday, July 24, 2010
Monster Hiccups and More
Weird dreams, strange pains, jumbled emotions, and confusion have been the calling cards of this past week. You’d think I was talking about Johnny, but all of those things pertain to both of us now.
I’m already over this whole broken ankle/foot gig. Seriously, this is absolutely the most annoyed I have ever been with my physical self. I think I am a lot better at being a care-giver than care-receiver. But I won’t complain because there are a whole lot of people taking really good care of me and the boys. Just frustrating, you know?
On Thursday we took a little jaunt to the Emergency Room because Johnny was SERIOUSLY dehydrated and talkin’ crazy. It was very scary for him and the rest of us. In his confusion, he thought we were talking about it being time for him to die. He even made the boys come say good-bye to him. It was the most difficult on the boys because they thought it must be imminent since he was saying good-bye. And, although very tough on me to watch him, I was pretty sure that it wasn’t yet time. He ended up receiving three litres of fluids and once again, he was back (or at least close) to his right mind. While we were there, they did a chest x-ray and a CT of the brain just to check on things. Both were clear. Thank the Good Lord.
Once we were home and settled down a little bit, we explained the confusion component of dehydration to the boys and that we may have more episodes like this in the future. It has to be hard on their heads and hearts to process this all; I know it is on mine.
Since the trip to ER, Johnny has been drinking fluids around the clock. He remembers the confusion enough that he has found new focus in maintaining his fragile fluid balance.
Hiccups have become an annoyance for him daily, too. Because the liver sits right below the diaphragm, and an irritated diaphragm causes hiccups, it was inevitable. It wouldn’t be bad if they were normal little “excuse me” types of hiccups. These are the Monster Grand-Daddy of All Hiccups. He sleeps mostly on his back now (ever since surgery) and when he is totally relaxed and his mouth and oral structures are too, a hiccup erupts like a prehistoric dog bark. The first time he did it, I actually shot out of bed. I had NO idea what had just happened. I thought it was a lot more than a hiccup. They are so loud they actually wake Johnny up. We have discovered that if he drinks something right after he starts, it minimizes the duration, and if he rolls on his left side they are less frequent and less severe.
We will go to the infusion center for lab draws on Tuesday to check primarily on his calcium level, but the rest of the values as well -- like his electrolytes. I go to the doctor on Wednesday to check on my ankle/foot. Jake gets his braces on Tuesday. Quinn remains doctor appointment free for this week. He wins the prize.
SIDE NOTE: Thanks to the Class of ‘85 for calling in a toast tonight during the class reunion. We really wish we could have been there. It meant a lot that you guys were thinking of us. See you at the next one.
ADDITIONAL SIDE NOTE: To our families -- we love you all so much. Thanks for the non-stop care.
I’m already over this whole broken ankle/foot gig. Seriously, this is absolutely the most annoyed I have ever been with my physical self. I think I am a lot better at being a care-giver than care-receiver. But I won’t complain because there are a whole lot of people taking really good care of me and the boys. Just frustrating, you know?
On Thursday we took a little jaunt to the Emergency Room because Johnny was SERIOUSLY dehydrated and talkin’ crazy. It was very scary for him and the rest of us. In his confusion, he thought we were talking about it being time for him to die. He even made the boys come say good-bye to him. It was the most difficult on the boys because they thought it must be imminent since he was saying good-bye. And, although very tough on me to watch him, I was pretty sure that it wasn’t yet time. He ended up receiving three litres of fluids and once again, he was back (or at least close) to his right mind. While we were there, they did a chest x-ray and a CT of the brain just to check on things. Both were clear. Thank the Good Lord.
Once we were home and settled down a little bit, we explained the confusion component of dehydration to the boys and that we may have more episodes like this in the future. It has to be hard on their heads and hearts to process this all; I know it is on mine.
Since the trip to ER, Johnny has been drinking fluids around the clock. He remembers the confusion enough that he has found new focus in maintaining his fragile fluid balance.
Hiccups have become an annoyance for him daily, too. Because the liver sits right below the diaphragm, and an irritated diaphragm causes hiccups, it was inevitable. It wouldn’t be bad if they were normal little “excuse me” types of hiccups. These are the Monster Grand-Daddy of All Hiccups. He sleeps mostly on his back now (ever since surgery) and when he is totally relaxed and his mouth and oral structures are too, a hiccup erupts like a prehistoric dog bark. The first time he did it, I actually shot out of bed. I had NO idea what had just happened. I thought it was a lot more than a hiccup. They are so loud they actually wake Johnny up. We have discovered that if he drinks something right after he starts, it minimizes the duration, and if he rolls on his left side they are less frequent and less severe.
We will go to the infusion center for lab draws on Tuesday to check primarily on his calcium level, but the rest of the values as well -- like his electrolytes. I go to the doctor on Wednesday to check on my ankle/foot. Jake gets his braces on Tuesday. Quinn remains doctor appointment free for this week. He wins the prize.
SIDE NOTE: Thanks to the Class of ‘85 for calling in a toast tonight during the class reunion. We really wish we could have been there. It meant a lot that you guys were thinking of us. See you at the next one.
ADDITIONAL SIDE NOTE: To our families -- we love you all so much. Thanks for the non-stop care.
Tuesday, July 20, 2010
Overwhelmed
My current mental state is "OVERWHELMED". Can you imagine?
This will be short tonight, because my angry left ankle is telling me it is pill time, and I never argue with an angry ankle.
To all that attended the Birthday Bash. . . . umm . . . . Whoa. I felt like I was in a Vortex of humans and loved each minute of it. Waiting for the official count from tomorrow's closing meeting, but it looks like around 900 people attended the party. That's right: NINE ZERO ZERO. Amazing. What an amazing display of love for the most amazing man I have ever had the privilege of knowing.
Thanks to every single person that made it possible and I know there are so many of you that I am afraid to name names for fear of missing someone. I love you all.
With my ankle and foot now unusable, we have had to slow way down at our house. Not a bad thing.
If you aren't aware, the Thursday before Relay for Life I fell down two steps walking out to the garage and pretty much wrecked my left ankle (comminuted displaced fractures of both the tibia and fibula) and broke the 5th metatarsal in my right foot. I had surgery to fix the ankle on the Wednesday before the Birthday Bash and was the lucky recipient of 3 plates, 11 pins, and 2 screws. Both are non-weight bearing injuries, so I am wheelchair bound. I do have permission from the doctor to use a walker with my cantilever boot on my right foot so that I can hobble to the bathroom and back to bed to elevate, elevate, elevate.
Breaking both legs really wasn't in my plans for fun things to do this summer, but lets look at the silver lining in all of this, shall we? My right foot requires 4-6 weeks of non-weight bearing. My left ankle requires 4-6 months of non-weight bearing. This means I cannot work. Do we see where this is heading? I am on disability until my ankle heals which means I STAY HOME! Staying home with my Toad is a gift. Every single minute I get to spend with him is a gift. I wouldn't say that breaking my legs was how I would have gone about this -- I was thinking a lottery win would suffice -- but I'll take it. The only reason this is working at all is because of our families. They have had to work non-stop to keep us going. I love them all! Quinn has really stepped up to the plate and has been an incredible help to us. He's growing so quickly and takes this very seriously. He checks on us every night before bed for filled water glasses, snacks, etc. I am so incredibly proud of him. Jakey plays things off with humor (I have no idea where he gets that!). He also keeps himself uber busy so that he doesn't really have time to think about it. That's ok, too. When he is home, he is very attentive as well. He's just harder to nail down.
Johnny had chemo yesterday and was super dehydrated. They gave him a total of 2 additional litres of fluids. It is amazing to me to see him change color before my eyes when he receives fluids. Most of his labs have remained stable, but his calcium level was critical. We had to go back today to receive an additional infusion that will pull the calcium back into the bones where it belongs (Bonus!) and out of the blood where it becomes a toxin. Some of his bizarre behavior, especially while sleeping and dreaming may have been because of his calcium level. This is something we will most likely check every week now. We don't want to chase our tail with this. . . too hard to catch it once it gets away.
He was also near-critically constipated from the pain meds and dehydration. He was given an oral medicine that looked like something the Grinch whipped up. It worked, fortunately, and now that we have a hydrated Toad with working plumbing and a week to relax, I think we will see some pretty good improvement over the next week or so. My goal is to get 5 pounds back on him by his next chemo (today's weight: 170.6). We have some great plans in the work to make that happen.
Speaking of eating, Lori Brawley is acting as our Meal Coordinator again. If you would like to help with meals, please contact her and she will set you up with an available date. I cannot tell you how much of a blessing this is to us, especially now that I can't stand! (Not that my cooking is remarkable to begin with!)
My sister, Angie, has been helping out with the cleaning and dusting and such (along with a couple of friends) and I've had a lot of people ask if they could help. If you are interested in participating on the Cleaning Crew, please contact Angie.
Both Angie and Lori can be reached by Facebook, but the rest of the information I will post on the side-bar at the right.
Thanks for taking care of me and my family. I love being a part of a community where this just happens; it isn't expected or taken for granted. It just happens. I am so proud to be from Niles.
This will be short tonight, because my angry left ankle is telling me it is pill time, and I never argue with an angry ankle.
To all that attended the Birthday Bash. . . . umm . . . . Whoa. I felt like I was in a Vortex of humans and loved each minute of it. Waiting for the official count from tomorrow's closing meeting, but it looks like around 900 people attended the party. That's right: NINE ZERO ZERO. Amazing. What an amazing display of love for the most amazing man I have ever had the privilege of knowing.
Thanks to every single person that made it possible and I know there are so many of you that I am afraid to name names for fear of missing someone. I love you all.
With my ankle and foot now unusable, we have had to slow way down at our house. Not a bad thing.
If you aren't aware, the Thursday before Relay for Life I fell down two steps walking out to the garage and pretty much wrecked my left ankle (comminuted displaced fractures of both the tibia and fibula) and broke the 5th metatarsal in my right foot. I had surgery to fix the ankle on the Wednesday before the Birthday Bash and was the lucky recipient of 3 plates, 11 pins, and 2 screws. Both are non-weight bearing injuries, so I am wheelchair bound. I do have permission from the doctor to use a walker with my cantilever boot on my right foot so that I can hobble to the bathroom and back to bed to elevate, elevate, elevate.
Breaking both legs really wasn't in my plans for fun things to do this summer, but lets look at the silver lining in all of this, shall we? My right foot requires 4-6 weeks of non-weight bearing. My left ankle requires 4-6 months of non-weight bearing. This means I cannot work. Do we see where this is heading? I am on disability until my ankle heals which means I STAY HOME! Staying home with my Toad is a gift. Every single minute I get to spend with him is a gift. I wouldn't say that breaking my legs was how I would have gone about this -- I was thinking a lottery win would suffice -- but I'll take it. The only reason this is working at all is because of our families. They have had to work non-stop to keep us going. I love them all! Quinn has really stepped up to the plate and has been an incredible help to us. He's growing so quickly and takes this very seriously. He checks on us every night before bed for filled water glasses, snacks, etc. I am so incredibly proud of him. Jakey plays things off with humor (I have no idea where he gets that!). He also keeps himself uber busy so that he doesn't really have time to think about it. That's ok, too. When he is home, he is very attentive as well. He's just harder to nail down.
Johnny had chemo yesterday and was super dehydrated. They gave him a total of 2 additional litres of fluids. It is amazing to me to see him change color before my eyes when he receives fluids. Most of his labs have remained stable, but his calcium level was critical. We had to go back today to receive an additional infusion that will pull the calcium back into the bones where it belongs (Bonus!) and out of the blood where it becomes a toxin. Some of his bizarre behavior, especially while sleeping and dreaming may have been because of his calcium level. This is something we will most likely check every week now. We don't want to chase our tail with this. . . too hard to catch it once it gets away.
He was also near-critically constipated from the pain meds and dehydration. He was given an oral medicine that looked like something the Grinch whipped up. It worked, fortunately, and now that we have a hydrated Toad with working plumbing and a week to relax, I think we will see some pretty good improvement over the next week or so. My goal is to get 5 pounds back on him by his next chemo (today's weight: 170.6). We have some great plans in the work to make that happen.
Speaking of eating, Lori Brawley is acting as our Meal Coordinator again. If you would like to help with meals, please contact her and she will set you up with an available date. I cannot tell you how much of a blessing this is to us, especially now that I can't stand! (Not that my cooking is remarkable to begin with!)
My sister, Angie, has been helping out with the cleaning and dusting and such (along with a couple of friends) and I've had a lot of people ask if they could help. If you are interested in participating on the Cleaning Crew, please contact Angie.
Both Angie and Lori can be reached by Facebook, but the rest of the information I will post on the side-bar at the right.
Thanks for taking care of me and my family. I love being a part of a community where this just happens; it isn't expected or taken for granted. It just happens. I am so proud to be from Niles.
Tuesday, July 6, 2010
Back to Reality
Seriously, I should have my blogger status revoked! I can’t believe how much time has passed since I last blogged.
I can tell you, we have been BUSY!
In a nutshell, this is what we’ve been up to:
Getaway weekend in Chicago
I can tell you, we have been BUSY!
In a nutshell, this is what we’ve been up to:
Getaway weekend in Chicago
- Blue Man Group
- Ate at Rosebud (Italian)
- Went to museums/aquarium
- Ate at Smoque (from Diners, Drive-Ins, and Dives)
- Watched Cubs beat the White Sox
- 1 House
- 1 Bird
- 2 Dogs
- 23 People of all ages, shapes and sizes
- 1,000,000 memories
Cincinnati Reds Game
- Quick trip to Jeff and Bernice Johnson’s house (Love you guys!)
- Quinn dropped off with Cincinnati Reds at 12:30
- Watched Reds batting practice ON THE FIELD!
- Watched Quinn in the outfield with the Reds players shagging balls during hitting practice
- Watched Quinn CATCH a fly ball to the outfield!
- Enjoyed an exciting Reds vs. Phillies game in great seats
- Watched Quinn work his butt off as Bat Boy for the entire game
- Picked Quinn up at 10:30 pm after a FULL day with the team
- Became a life-long Cincinnati Reds fan
Trip to Boyne Highlands with the DeCraene Family
- Hang out by the pool and in the shade
- Enjoyed the gorgeous weather
- Ate lots of good food in the Slope Side Lounge
- Watched the Young Americans perform in the Dinner Theatre
- Enjoyed spending a little time with Bill, Robyn, and Lizzie (Love you guys!)
- Watched the most amazing 4th of July parade in Harbor Springs.
- Enjoyed being together with my entire family (Love you guys, too!)
- Made another 1,000,000 memories
And today it is back to the unavoidable realm of chemotherapy. Ugh.
To be perfectly honest, the last two and a half weeks have taken their toll on Johnny. It was so important to him to be able to participate in all of our activities that he really pushed himself to his limit and beyond. There were many times that he needed to sit and rest and be an observer, rather than a participant. His activity level has decreased based on his lack of muscle volume/strength.
He has lost another 9 pounds.
From the lack of muscles and the increase in activity, he has had some pretty excruciating nights. Mostly from spasm. We have discussed pain control options with Dr. Ansari and are trying several new things, including a Duragesic patch and a Lidocaine patch. Both are for pain management. We also discussed Medical Marijuana, and Dr. Ansari is a proponent of that and wrote us a prescription.
At times he is having difficulty breathing. We mostly attribute it to the muscle spasms and the involvement of the diaphragm. After chemo today we went to St. Joe Med Center for a chest x-ray just to make sure there isn’t anything else going on. We will get those results tomorrow. I am nervous about the results of the x-ray knowing that there was mediastinal lymph node involvement two months ago. Could it have spread to the lungs already? I pray so hard that isn’t the case.
He is scheduled for another session of chemo on the 19th and we will discuss further treatments and the next CT scan. His labs weren’t really that horrible considering how exhausted he is. His Alk Phos continues to climb, but his other liver labs remain steady and in the normal range. Blood counts are OK, but his white count is back in the 6-7 range and that needs to come up a little bit to make me comfortable.
I have grounded Johnny for the next 5 days. He will stay in bed and close to the house so he has enough energy for the Relay for Life coming up this weekend. We hope that you will come join us, even if it is just to socialize! GO HERE for more information on the Relay. We can use walkers around the clock. If you are interested in walking call Angie (684-7402) and schedule a time slot. Bring friends with you -- the more, the merrier, right?
The following weekend is the giant Toad Birthday Bash/Benefit. It sounds like it will be an amazing party and I know there are a ton of people working to make it the best party ever! If you would like to help Ginger make some food, she said to give her a call (269-683-9001).
Thanks for sticking with us for an entire year. We feel the love and support surrounding us always.
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