Epilogue

Today marks one month since my heart broke and a large piece of it traveled with my Toad to heaven.

The boys and I are doing as well as could possibly be expected.  We talk to each other a lot, cry together a lot, and even cling to each other when we need to. 

Obviously, the three of us haven't gone a single second without thinking, missing and loving Johnny.  I still expect him to come home, there is so much I have to tell him . . . but, I know.

School has started and with that comes the comfort of a schedule that needs to be followed.  I am still off work with my ankle/foot fractures, and appreciate this time that I've been given to be the mom my kids need right now.  I've pledged to love them as much as both me and Johnny combined.

I'm doing quite a bit of soul searching where returning to work is concerned.  No plans as to what capacity or how much I plan on working when I go back, but I know that there are drastic changes that I have to make due to the nature of my job and the need to be home for my boys.  I am praying daily for guidance.

I can't even begin to use the words "Thank You" again, because it isn't enough.  Every need has been met and that makes moving forward so much easier to tackle.  Every one of you have made that possible.  I love you all.

This will be the last post for The Fighting Toad.  Since it was started to chronicle Johnny's cancer journey, his death was the final chapter.  Thank you for staying with us on the journey and please keep our family, our entire family, in your prayers for a very long time. 

I have been asked if I plan to continue writing and the answer is:  I don't know.  Maybe once my head is clearer and I have everything settled I'll start a new blog. . . maybe.  I'll let you all know.

Here are a few things that Johnny lived by that I'd like to leave you with:

• Surround yourself with good people.
• Do the right thing, even if you are the only one doing it.
• Be a good friend.
• Follow the rules.
• Love completely and say it at every opportunity.

May God continue to bless us all.

So long for now, my Toad Prince

Where to start. . .

When I wrote last I knew we were getting close to the end.  I had NO idea we were that close.

In my last post I had failed to mention that when we got home on Wednesday from the hospital, Johnny and I laid down to take a nap.  When I woke up, he wasn't in bed.  As a matter of fact, he wasn't even in the house.  I heard him outside yelling at the dogs to get in the house.  I rolled my chair out to the kitchen and found him standing in the garage trying to get Soleil to cooperate and get in the house. 

"What are you doing out here?"  I screamed at him.

He told me he had taken a walk back into the woods to see how in shape he was for bear hunting.  He came in the house and was walking around so strongly on his own.  It had been months since he had been able to walk with a solid/strong gait. 

"Wow, Look at You!" 

"I know, I feel great."

"Well, DON'T YOU EVER DO THAT AGAIN!!!  YOU ARE BARE-FOOTED AND WHAT IF YOU WOULD HAVE FALLEN DOWN!"

"I made sure I stayed where you could see me if I was laying on the ground."

That's my Toad.

Thursday came around and I was surprised that he was showing some signs of muscle weakening and the start of the familiar confusion I had come to really hate.  He was still conversational, and when Jim and Molly picked up the boys to go to Cedar Point, the boys kissed and hugged their dad.  Johnny told them to go and have the best time EVER.  They both left with, "I love you, Dad." being their last words as they walked out the door.

Thursday continued with the confusion worsening.  By Friday, he was mostly sleeping and didn't do any talking.  He would respond to me, but most of his responses were either hard to get out or not appropriate.

The hospice nurse came on Friday afternoon and did an assessment.  When she was done asking him/me questions, she asked me to come into the kitchen so we could talk.

"I have just met you, so I don't know how much you want to know."

Hello, it's me, so of course I said, "Everything."

She said, "He is progressing even faster than I think you realize."

"So, the 2-3 months that Dr. Ansari said is probably pretty optimistic?"

"Making it to the end of this month is probably pretty optimistic."

Long Silence.   Those little twinkly lights started to show up in my vision.  Deep Breaths, Deep Breaths.

We continued to talk about comfort measures and made sure that we had everything in the house to make this possible.  I asked about food and fluids.  Her response was that it wasn't really necessary any more.  He would soon lose his ability to swallow, and there was really no point in forcing him, which would only lead to having the food/fluids go into his lungs.

She said that soon he would lose bodily functions and may begin to get agitated easily.  She gave me instructions for every scenario she could think of.  She also made sure I had the Hospice number in strategic places around the house. 

Wow, that was a lot to absorb.  I've always considered myself a realist, but I thought she was talking about things that I had days to weeks to prepare for.

At bedtime Friday night, I told him everything the nurse had to tell me.  He was pretty lucid at the time, and I think he understood most of it.  I cried on his shoulder for a long time while he rubbed my shoulder.  I said, "I'm losing you and there isn't any thing I can do."  He said, "I'm ok.  You'll be ok."  I asked him again if he was scared and he replied, "Never."

I spent the rest of the night telling him how much I loved him and how happy he made my life.  I told him some of my favorite stories of "us".  He squeezed my hand and said, for the last time, "I love you, Babe."

He woke up Saturday and was basically in the recliner all day.  He went back to bed about 4 in the after noon and started moaning and was starting to lose consciousness, intermittently.  A build up of secretions had started which was making him sound like a motor boat with a weak engine.  As the evening progressed, so did the secretions.  By late evening I called Hospice for some direction on how to handle this level of fluid.  They told me what to do and I did it.  For about 10 seconds it seemed be better.  Over the course of the next two hours I called twice more.  I really found it hard to believe that I was struggling with this so much.  I felt like I was letting him down.

At about 1 a.m. Jimmy came over (to pick up kids from Bryanna's campfire next door) and just stopped in to see how Johnny was doing.  Having him with me was a gift from God.  I am so glad that I wasn't alone with all that was going on.  He helped me try to get Johnny comfortable by sitting up, laying down, whatever.  Nothing would stop his agitation.  I called Hospice again while Jimmy was here and just asked if someone would come out and check him.  At this point Jimmy and I both thought he sounded like he was drowning.

Within the next couple minutes, Johnny's agitation subsided, he became still, and took two very deep breaths and then stopped breathing altogether.  Jimmy and I looked at each other, and the only thing I could think to say was, "Oh, no, Jimmy."

And then his 13 month struggle had ended.  While my heart broke, I thanked God for his mercy in not having Johnny linger and struggle.

It is my belief that when Johnny took his walk in the woods, that was his "sudden burst of energy" that the terminally ill seem to get.  I also think this was his turning point for deciding that he wouldn't be strong enough to bear hunt. 

I miss him each minute with everything I have.  I loved him and he loved me.  That isn't something that death takes away. 

My eyelids are no longer cooperating, so I am closing for now. There is so much in my heart that I still have to share.

Quickly, here are the arrangements:

Visitation:
Thursday, 2-8 pm at Halbritter on Main St, Niles
We are encouraging people to wear their Fighting Toad shirts if they have them.  It's what Johnny will be wearing!

Funeral:
Friday, 2 pm at the Hope Community Church, Lake Street, Niles

Luncheon to follow:
Niles High School Cafeteria, 17th and Eagle St, Niles

Memorial Contributions can be made to the Brian Parker Memorial Foundation.
A college fund has been established at 5/3 bank for Quinn and Jake.

God Bless us all.

Not enough time . . .

Our hospice nurse, Deb, stopped yesterday to do a complete check on Johnny.  She was very thorough and asked many, many questions.  I liked her instantly.  I think in Hospice training they must have a class on speaking calmly and quietly, but with confidence. 

After her review of Johnny we went to the kitchen and she said, "I don't know you yet, so I don't know how much you want to know."  I do know me, so of course I said, "Everything.  And I want it straight."

"He is moving along very quickly."

Long silence followed.

"So you think the 2-3 months Dr. Ansari mentioned was generous?"

"I think making it to the end of the month may be generous."

While she was here, Johnny was still able to talk a bit and answer questions although I had to fill in the blanks of his confusion.  In just one day's time, he is unresponsive, incontinent, and moans pretty much non-stop.  I don't believe he is in pain, but I do give him his medications as directed by Hospice so that I know he isn't suffering.  At times he is agitated, but that is usually only for a few minutes at a time.  His wakeful periods are minimal.

The boys came home today from Cedar Point with Uncle Jimmy (not a Boo) and Aunt Molly.  When they left on Thursday, Johnny was still able to have a decent conversation.  They were devastated to walk in and see him in this condition. 

We took time for the four of us to lay together in our bed and talk about what Dad is going through and how long it could possibly take for him to pass.  As I have mentioned before, I feel like their childhood's have been ripped away from them.  It was in their beautiful eyes and on their sad little faces today.

Quinn asked if it was wrong to want him to die soon.  I told him that is was my shared prayer that if we can't keep him, then we would like God to be merciful and bring him home as quickly as possible.  Jake wants him to be cremated (which is Johnny's wish as well) because he doesn't want him stuck in the ground. 

Tonight I had to call Hospice to get direction for Johnny's uncontrolled secretions.  His cough isn't strong enough to manage them and he was having a hard time breathing and was doing a lot of coughing in response.  I gave the medicine that they provided and have noticed that over the past hour or so, he no longer sounds like a motor-boat trying to start up.  His moaning is nearly constant, so I just try to whisper to him or rub his back.  I don't think it helps him at all, but it helps me.

I'm trying to stay strong by meditating.  Ok, not the "hippie" type of meditation or the Ashram kind, just closing my eyes and trying to find the calmest spot I can find and stay there for as long as possible.  I only allow pleasant thought and beautiful images there, and I always hold Johnny's hand while I'm doing it.  I truly feel him calm along with me.  I don't have a mantra or anything, but just sitting still and being calm and quiet has a very positive effect on me.  I plan on continuing to do this even after Johnny has passed.

Do I have a feeling at all on how long I think it will be?  No, not yet.  I know that he has already gone 3 days without any food/hydration.  I just can't see him going on much longer, and truly it is too hard to watch my Johnny not actually be here while he is laying in our bed.  I already miss him so much.

Dear God, please bring him home to you quickly.

Major Decisions

Five days in the hospital . . . Let me just say, “WOW”. 

As I’ve been talking a lot about lately, Johnny’s fluid balance got the best of us once again which landed him  in the ER with an admission to the Oncology floor.   

Last Saturday was Matt Brawley’s (and Mrs. Brooke Brawley) wedding. Johnny was adamant that he was going to that wedding. He wouldn’t take no for an answer, and to tell you the truth I didn’t try really hard to say no.   

He complained all morning about excruciating stomach pain across the middle of his abdomen. I knew he was terribly dehydrated, too. After Matt and Brooke’s beautiful wedding, I brought Johnny home and before he even got back into bed, he said, “I need to go to the hospital.”    

I knew it was bad if he was telling me. 

In the ER, they started him on fluids and drew labs, etc. We knew from the last abdomen CT that he had an inflamed pancreas and now we had reached full blown pancreatitis. Don’t ever wish pancreatitis on your worst enemy. It is terribly painful, and treated mostly with “gut rest” or in other words no eating or drinking.  

Over the course of his admission, we reviewed his medications and pain management and have made several changes where that’s concerned. Improvements have all been working nicely.   

Chemotherapy was scheduled for Monday morning, but since he was inpatient, we obviously didn’t go. Instead, Dr. Ansari came to us. We had a long heart-to-heart. Dr. Ansari explained to us that we can see on the CT that Johnny’s belly is fully affected by cancer now -- lymph nodes are getting even more involved, there is inflammation of the entire mesenteric area and his pancreas is terribly inflamed (although not yet invaded by cancer). There are now mutliple nodules in the lower lobe of his right lung and the chest lymph nodes are increasing in size and number.    

We are losing the fight.   

The difficult decision to stop all chemotherapy was made. Dr. Ansari said he didn’t want to go back to the infusion center to tell the girls, because they all have fallen in love with Johnny. Who could blame them? 

I asked if we were still on track with the time frame he had initially told us in May, which was about 6 months. He said at this point it looks like 2-3 months, but Johnny is a strong-spirited guy and didn’t commit to a definite number.   

Johnny told him that he wanted to go home and Dr. Ansari agreed and said that as soon as the pancreatitis had calmed down we could go. When that time came, he said that instead of having Johnny come back to the ER every time he needs fluids, he wanted us to go home with Hospice Care.    

Hospice? Oh my God, that is for people who are dying. And my Johnny needs Hospice Care? How did that happen so soon?    

We have met most of his Hospice Team, and if you’ve ever heard anyone talk of Hospice and how amazing the people are, they are right. Every encounter we have had so far has been incredible. Johnny’s comfort is the number one concern. They told me, “We are your 911 from now on. You call us day or night when you have a need. We are here for you, Johnny and the boys.” It is very calming to know I can keep Johnny here  and they will come to him if he has another crisis.   

Johnny is feeling much better, but still sleeps most of the time. When he wakes, he is usually talkative and jokes around. When he is listening to conversation, his eyes are closed, but he stays involved in the conversation. 

Please pray really hard for the boys right now. They understand that our time is short and it is becoming so much more difficult knowing that saying a final goodbye is creeping closer daily. Quinn is wearing his emotions on his sleeve and tries so hard to be brave and strong. The two of us had a good talk/cry together last night and I know that eventually we will all be fine again. I love that he loves his dad so much and we talked about how lucky he is to have a dad that has been involved in his life from day one. His uncles will all foster his love of hunting and fishing and he is such an “old soul” that I know I will be able to lean on him on days when I feel I can’t stand on my own.   

Jake tries to stay involved with his friends as much as possible and still manages to keep himself involved with Johnny, although to a less physical degree than Quinn. Jake’s network of friends and “other mothers” will make this situation more tolerable for him. I’ll also be able to lean on Jake and his humor when I am having bad days.   

Together the three of us are invincible.   

Lately I have been reading a lot and working on finding peace and understanding. I know I am a strong woman and will eventually (with my boys) be ok. I refuse to ask, Why me? Or Why Johnny? That just doesn’t make anyone feel any better.     

I will spend the rest of Johnny’s days making it my duty and my honor to help him feel the best he possibly can.   

We still love to have visitors, but I know you will all understand when I say that I have to limit the number of visitors per day/week. If you are interested in stopping by, please just give us a jingle first and we can determine if it is a good time or not. I know you will understand if it just isn’t a good day, and we will try again later. Also, please understand that sometimes we don’t answer the phone (We do not have caller ID, so we aren’t screening, I swear!). We may both be sleeping, talking, or just not in a position to carry on a conversation. Leave a message, or try another time. We want your calls! Promise!   

Thanks to everyone who have asked about my legs. This I can tell you: One broken ankle sucks, add to that a broken foot and it is downright cruel. I am please with the answer to my prayers to stay home with Johnny, but struggle with how badly my physical body has let me down. Nighttime is the worst because by then the cam boots feel like I am wearing my dad’s snowmobile boots with lead weights in them. They are heavy, hot, and annoying. Especially when the Velcro sticks together and I can’t get my legs apart in the middle of the night. I’m telling you, someone should put a secret camera in my room if they want to win AFV’s $100,000 grand prize!    

My multitude of thanks continues to everyone providing comfort for my family. Whether it is food, prayer, visits, whatever . . . Thank you so much.

Good Calcium, Bad Tummy

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. 

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.

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. 

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

• 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

Week in the Upper Peninsula with the Brawley Family

• 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.

Heading North

Tomorrow we are heading to the Upper Peninsula with Johnny's whole family.  John, Ginger, Jim, Molly, Andrew (and Kait, I think), Joshua, Dan, Aida, Skyler, Willow, Talon, Pooh, Melissa, Zack, Zoe, and of course, Johnny, me, Quinn and Jake:  all together enjoying our quirky family and guaranteed to return home with a million stories to tell.  This will be a week to remember for us all.

Two big events are heading our way very soon.  Relay for Life (July 10-11) at Niles High School and the Toad Brawley Birthday Bash/Benefit on July 17th.

I will take the week up north to get my thoughts organized and then will post full details on both events as soon as we return.

We are looking to have an enormous team for Relay for Life with a bunch of people walking the track in Johnny's honor for the duration of the event.  Even if you can only come to walk for one lap, please consider joining us.  It would mean a lot to us!  We need walkers as much as we do team members.  Anyone interested in walking can either message me, FB msg, or email me with the time you are available to walk and I will sign you  up.

The details that I do know are: 
Opening ceremony:  Saturday, July 10th at 12:00 noon.
Survivor ceremony:  Saturday, July 10th at 6:00 pm.
Luminaria ceremony:  Saturday, July 10th at 10 pm.
Closing ceremony:  Sunday, July 11th at 8 am.

If you are interested in joining the team or making a donation, please go HERE and scroll down until you find our team name:  The Fighting Toad.  You can click on the team name for donations or "join team" to be added.  We would love to see everyone there.

We plan on having birthday cake for Johnny at the Relay for Life on Saturday, July 10th at about 8:00 pm. 

Speaking of Johnny's Birthday!!!

Some AMAZING friends are planning a pretty big party/benefit the following weekend (Saturday, July 17th) to celebrate Johnny's 44th birthday.  EVERYONE IS INVITED!!!   This is so huge, there is a planning committee and sub-committees.  Crazy!  This is a great opportunity for everyone to celebrate with Johnny and it promises to be one amazing night.  This is a family party, so kids are definitely welcome.  The party is from 4 pm - 10 pm at Roger and Shea Kulwicki's home (1409 Barron Lake Road, Niles) and will have great food, great friends and great fun.  Please please please join us!

Until we return from the Upper, please continue to pray for us all.  This trip will be very bittersweet for our entire family.

Also, our friend, Tom, is battling valiantly with cancer and really needs prayers for comfort.  We keep his whole family in our prayers as well.  Their son, Liam, and Quinn played on the same travel baseball team a few years ago, and our families have a lot of really great memories together.  Tom, aka Lars, was our team mascot and could wear a Viking helmet proudly!  Tara, I pray for you guys every time you are brought to my head and heart which is pretty much constantly.

340 Days Ago

My first blog entry was 340 days ago.  It wasn't a happy blog to start, but I felt an overwhelming need to keep our friends and family as up-to-date as possible with the diagnosis and treatment of Johnny's cancer.  I never thought there would be a more difficult day in my life after that, but I was wrong.

The worst day came a week ago yesterday, Sunday, June 6th, 2010, when we had to tell Quinn and Jake that Johnny was now considered "terminal".

We have been completely honest with the boys from diagnosis until now.  They have know the ups and down of the whole process.  We actually found out at the last chemo session that we were in "salvage" mode.  Trying to keep the lymph nodes in check for as long as possible.  On his last scan I explained that there are many lymph nodes involved in both the upper abdomen and chest.  As of now, nothing has shown up in the lungs, and we hope that it stays that way.

We decided to wait until the boys were completely done with school to tell them.  I feel like the moment we told them is the official end of their childhood.  They've been robbed.  They will be robbed even further.

We sat down on Sunday night after Johnny wouldn't let me stall any longer.  We had the boys sit in the living room with us, and Johnny started talking.  His monologue was absolutely beautiful and part of me wishes I would have recorded it so I could remember his loving words to our boys forever.  He first talked about what the doctor had told us, that nothing was working and there wasn't much left to try.  We still have the "experimental" option out there, but we haven't committed to that.  He then talked about how much he loves them and gave specific examples to each of them of things that he loves:  Quinn's old soul and love of the outdoors,  Jake's humor and compassionate soul for animals.  He told them that he knows we will do fine because all three of us are strong together and individually, so when one of us doesn't feel strong, the other two will carry the load for a while.  He told them both of his wishes for them in the future and his desire for them to follow their hearts and do exactly what they want to do for a career.  He wants to make sure there are no missed opportunities in their lives just because he isn't around.

Johnny talked about the potential for a miracle.  "If God chooses to spare my life on Earth, it is because I have work left to do here.  If He chooses to take me, then I have work to do in Heaven."  The calmness and reassurance in his voice was so soothing.  It is hard to explain, but a real calmness surrounded the boys and me.

I wish I could say I was strong and stoic during the whole thing, but I sobbed like a baby.  I'll never forget Quinn's piercing look into my eyes asking the question, "Is this THE TALK?"  I simply and silently nodded as Johnny continued.  I had always promised Quinn that when the doctor said he was terminal, we would have "the talk" as a family.  To see him look at his dad with the knowledge that we had limited time left was soul-wrenching.  Jake basically had the "I-told-you-so" thing going.  If you remember from the beginning, Jake thought that cancer automatically equalled dying.  I'm so sad for him that as his mommy I couldn't prove him wrong and make everything all better.  As the boys would say, "Epic Fail!"

The last thing we talked about with them was Quality vs. Quantity.  We obviously want him around as long as possible, but at what cost.  Johnny told them that he would much rather feel good for 6 months and quit chemotherapy, than to feel awful for 9 months and continue chemotherapy.  Fortunately, they are both at an age that they could comprehend this concept.  As hard as it is to say out loud, I completely agree.  It is an easy concept to buy into on the days that he is stuck in bed feeling terrible.  Not so easy to buy into on the days that he is up and on the move, looking and feeling fine.

As Johnny's wife and Quinn and Jake's mom, I feel like I'm on a roller coaster.  I want to be strong for them, and feel like I do a good job most of the time.  Other times, I am a puddle and just can hold things together.  I let the boys see me cry, because I want them to know it is fine to open the floodgates and let it out.  I just try really hard to not make it a daily occurrence. 

I know we have kept this news from the majority of you for a little while, and I hope you'll forgive us.  Johnny was very specific in telling certain people in a certain order and timeframe before I put it on the blog.  That is probably why I haven't blogged in two weeks.  I couldn't think of anything else to say.

Now that I have that out of my system, I'll be blogging a bit more regularly.  I promise.

And to let you know, Johnny's lab values all rebounded this week at chemo.  His WBCs are back up to 7.  I forgot to ask for a copy of his labs before we left today, but I know that everything came back up that was low last time.  Hemoglobin was 11-ish, Platelets were 155.  Better.

He received the same chemo as last time, and was again sent home without the 46-hour infusion.  Dr. Ansari believes that there is really no use in compromising his overall health for the little (if any) benefit the 5-FU was providing.  It is the other two drugs (Avastin and Oxilaplatin) that help with the lymph nodes.

Please continue to pray for us all.  Johnny especially, Quinn and Jake, too.  Throw me in there at the end if you have a second or two extra.  My boys are the most important right now if you have a specific prayer order you follow.

We will be fine, I promise.  As Johnny continually tells us, he has the easy job. . . it's those of us who will be left behind missing him terribly that have the hard job.

Prayers Still Required

The great thing about holidays falling on a Monday is that you get an extra day off before heading back in for chemo! 

We had an excellent Memorial Day Weekend, celebrating with friends from all over!  Jimmy Jordan and his boys were here from Atlanta and the Johnson Family came all the way up from Southern Ohio to say hi.  Not to mention getting to watch Quinn march in his final parade of Jr. High Band and spending Monday with my family, including my favorite uncle, Jeff.  Johnny even went carp shooting with Pooh and suffered only minor injuries.

Overall the switch from the CPT-11/FUDR protocol back to the Folfox protocol with 5-FU has been a piece of cake.  The CPT-11 protocol made him sick for 13.5 out of the 14 day cycle.  It was horrible and he looked and felt terrible.  He even told me that he thought he looked bad when he saw a picture of himself. 

Today was the second cycle back on the Folfox/5-FU protocol and things went relatively well.  Relatively.  We have some issues with Johnny's blood counts.  Everything is creeping into the crapper with his CBC (Complete Blood Count for the non-medicals out there).  We aren't at the critical stage that would require transfusion yet, but we need to see a turnaround pretty soon.

As a matter of FYI, here are his current CBC values with normal ranges in parentheses:

• WBC  2.71   (4.0-11.0)
• RBC  3.76    (3.9-5.9)
• HEMOGLOBIN   11.4   (13-17.3)
• HEMATOCRIT   33.8   (39-53)
• PLATELETS   115   (130-470)

In other lab news, his liver labs and others look pretty good:

• GLUCOSE   97  (64-105)
• BUN   10   (8-23)
• CREATININE   0.66   (0.70-1.5)  A little low.
• SODIUM   139   (134-145)
• POTASSIUM   3.5   (3.6-5.2)  A little low.
• ALK PHOS  139   (38-137)  Liver lab  --  just a tad high, nothing to worry about.
• SGOT   25   (0-40)   Liver lab  --  Yeah!
• SGPT   24   (8-45)   Liver lab --  Yeah!

Because of his low blood counts, they didn't hook Johnny up to the 46-hour pump that he normally just LOVES to carry around.  I feel bad that he isn't getting the full amount of chemo, but also hope that this means he gets to have another couple of good weeks before the next round.  It should give his labs time to rebound a little bit.  That is our hope, anyway.

We are sooooo looking forward to Friday and the kids being out of school.  It makes it so much easier when we aren't dealing with school issues right along with everything else.  I need a break, and I know the boys do, too.

We have quite a few things in the works for this summer, and I'll fill in the details with all of that later.  Just wanted to check in with you and let you know that things are going fine here on Harrah Road (ok, not perfect, but fine nonetheless).

By the way, I am sooooooo very far behind on writing my thank you notes.  Please know that I am working on them and I owe many, many, many people a thank you! 

Please continue the prayers . . .

Busy Busy Busy

We are still here, folks.

Spring sports and end of the year school activities have been running us ragged! 

Johnny has done very well being back on the original protocol.  This one is SOOOOO much more tolerable for him, and the amount of nausea/vomiting/diarrhea has been minimal.  He has had a very good appetite again, which makes me happy.  I'm hoping he can put a little weight on now.

Johnny has a couple of friends coming in from out of town for this weekend's Bass Fishing Extravaganza.  It should be a weekend filled with fun, fishing and friendship.  I'm happy for Johnny that he will be feeling at his peak for this weekend.  He really needs this!

I'll report back after chemo on Tuesday, and until then please keep praying for his lymph nodes to respond to this good 'ol chemo. 

Please join us on our Relay for Life team, too.  In the next couple weeks I'll have the details for Johnny's birthday celebration at the Relay and will pass on all the pertinent information then.  JOIN TEAM TOAD HERE!

Back to the old stuff

The news from Dr. Ansari wasn't the best.  He indeed verified that the cancer has spread to the upper abdominal lymph nodes and the the mediastinal (chest) lymph nodes as well.  Also, the tumors in the liver have worsened even since surgery.

This very obviously means that the chemo isn't doing a thing to help, just making Johnny miserable.  Dr. Ansari decided that since the original protocol (Folfox with Avastin and 5-FU pump) actually cured the lymph nodes along with the colon cancer, we may as well revisit that in the hopes of at least controlling the spread of the cancer to the lungs and beyond.

He will have four cycles of this protocol and then we will make more decisions.  If it looks like there is some improvement, then we will stay with it for a while longer.  If that still isn't doing the trick, then we are looking at experimental drugs.  He mentioned a study that Johnny qualifies for, and we are willing to try whatever it takes.

We are trying to remain hopeful and positive, but the reality of the situation is that we are running pretty low on options.

I felt so bad for Johnny when he realized that going back to the old protocol meant coming home on the stupid grunting pump.  He was also reminded of the cold intolerance that comes right along with it, too.

Please pray, my friends.  We really, really, really need the chemo to start doing something to help.  I can't think of anyone more miracle-worthy than my Johnny.  I still believe it can happen.

Hoping and Praying

Johnny has had some really good days this past week and some really bad nights.  I feel bad that I haven't blogged much, but with the boys in spring sports things have been really busy.  To be perfectly honest, I'm also having a lot of trouble organizing my thoughts enough so that I would make a lick of sense.

Tomorrow is a big day.  We meet with Dr. Ansari and find out what direction we will be heading.  As we see it, we will either continue with things as they are for a while longer and see what happens, try a new protocol of chemotherapy, or try some new form of experimental drugs. 

Thanks for all the cards, calls, Facebook messages, visits, and meals.  I continue to be overwhelmed by the support our community has provided.  We are surrounded by so much goodness.

Please send up your most powerful prayers tonight and tomorrow.  Again, we are facing the unknown and that is always the hardest part.

I will update as soon as I am able tomorrow and will also add information about the Relay for Life.  If you aren't already aware, it is July 10 and 11 at the Niles High School track.  We are looking forward to having a great team and a GIANT birthday party for Johnny.

Clearing out the fog

There have been so many things rolling around in my head over the last week. I feel like I left everyone hanging with the dreadful news that the cancer has spread. I’d really like to clear up a few things that I may have left a little foggy.

We are still on schedule for chemo next Monday. However, we don’t know for sure if Johnny will still receive the CPT-11/FUDR protocols. If Dr. Ansari has reviewed everything and has decided that he believes the lymph node involvement to be a new finding, then the old protocols stop.

If he feels the lymph node involvement was there prior to starting up chemo again, then we will most likely stick with these protocols for a while longer and continue to watch the liver/lymph nodes. Avastin and Oxaliplatin may be restarted if he feels they will help the lymph nodes. Johnny received Avastin at the last session.

If it is determined that the chemo is doing nothing to help Johnny, then we start seeking experimental options. There are some amazing studies showing great promise. Every successful chemotherapy agent has had its start as a study drug. It may be just what we are looking for.

Please know one thing: We are not giving up. Neither one of us would ever give up on each other or our boys. Ever.

I have been questioning my focus quite a bit. Obviously when you get such soul-shaking news you start to think. Of things. Not always pleasant things. Scary things. Sad things. Things that you dare not say out loud for fear that they might come true. Things that you never thought you would be facing in all of your life. Things that absolutely can’t come true.

I have decided that my focus cannot center around the “what if” scenario and all the scary things that have crept into my mind. My focus must center on the fact that we still have hope. We still have options. I still have Johnny. I will not let him go easily, I can tell you that.

My faith in God and the power of prayer is just as strong as ever. Again, though, I feel like it has taken the back burner to my fears. I had a nice long conversation with the Great Healer the other night and I apologized for not thinking He could do His job. Of course He can. And I can’t think of anyone more worthy of healing than my Johnny. If this is a test of faith, then I certainly want to pass!

I have a whole lot of other things that have been cluttering my mind, and I will probably be unloading them on the blog over the next several days. It helps to get them out of my head and “on paper” -- so to speak.

Thanks to EVERYONE for the calls and visits. We love them!

Also, to the Niles Sluggers’ families: You Guys Are Amazing! Thanks for adopting us and feeding us for the last 10 days. It seems like just when things get rough for us, someone is there to help us through. The meals came at just the right time, a time when I just couldn’t even wrap my head around preparing meals and Johnny was too sick to take it on himself. Thank you, thank you, thank you.

Being part of the Niles Community is a huge blessing. I don’t know how we will ever be able to pay it all back. I’ll spend the rest of my life trying.

And now, I just ask for the prayers to continue.

Devastation

Sorry, I won't be able to post much right now.

News from the CT is bad.  Liver is worsening, despite both regimens of chemo.  Cancer has traveled outside the liver to the mediastinal lymph nodes (lower chest) and in the upper abdomen.

Dr. Ansari is giving Johnny his regular chemo regimen today, and adding Avastin.  He will evaluate our options and give us an updated plan in two weeks.  We may be looking at experimental options next.  Radiation isn't an option.  Additional surgery isn't an option. 

Heaven help us.  Please.

Looking for Improvements Tomorrow

Quick update tonight to get everyone praying in the right direction.

The weekend was relatively uneventful. Johnny felt good sometimes and borderline yucky at other times.

Since last Monday, he has only had one day of vomiting, and on and off diarrhea on a few other days. We consider that success.

I am contributing the success of the past week to three things:

1. Johnny's body has finally healed properly from the surgery back in February.  That was a whopper of a surgery and I don't think the amount of time it takes to recover from a surgery of that magnitude should be discounted.  He is physically stronger now that we are about 10 weeks post-op and I think the stronger his body becomes, the better he is equipped to handle what chemo keeps throwing at him.
2. The anti-anxiety meds that Dr. Ansari started him on a few weeks ago are definitely helping with the "anticipation nausea".  Also, I think it is improving his overall outlook in general.  He seems much more engaged over the last week when talking and being talked to.  I think he will continue to feel better as the levels of the medication peak and are maintained . . . we will know for sure next Sunday night before the next cycle.
3. The Sancuso patch is to this protocol of chemo what the Emend was to the last one.  I think it is relatively obvious when you go from 9 days of vomiting in the last round to only 1 day this time.  There doesn't seem to be any adverse side effects from it either.  Thankfully.

Tomorrow he has a CT scan at 9:15.  I am scared to death/super excited.  Minute by minute I alternate between tears and fear of the sneaky "What Ifs" that creep in and then I think that it will all be great news and the "peppercorn" lesions will all be gone in addition to some shrinkage of the big tumors.  The problem is, I just don't know.  Not knowing is so much harder.

I have a plan for both scenarios.  If it is good news, you'll hear me no matter where you are.  If it isn't the best news, then we move forward with what we are doing and assume that the stubborn tumors just don't know when to quit.  We are prepared to find out that he hasn't been cured, we are just looking for a little improvement . . . any improvement at all would be nice. 

If you don't have anything going on at around 9:15-9:30 tomorrow, we sure would appreciate a collective prayer from everyone.

Made it to Thursday!

Ok, I will give the Sancuso Patch two thumbs up.

Johnny did get a bit sick today, but only after talking to a nurse from the infusion center about the Sancuso patch! I feel like that qualifies as "anticipatory nausea". And I will say that his color looks infinitely better than what it normally does during this point of chemo week. He has the nasty firerhea, too, but hopefully the Imodium protocol will take care of that . . . it usually does.

He ate a nearly normal amount of food today, and did a great job at getting fluids down. I preach and preach and preach fluids!

Hoping and praying for a calm and restful night for Johnny. I'd love it if you would joing me in this prayer.

Be Vewy Vewy Quiet

Ssshhhh. I'm typing this as quietly as I can. Please read it silently, too, or just move your mouth if you must. I don't want Johnny's body to hear me. I just may jinx him if it does.

The patch is working.

No, really.

No vomiting yet. At all. As in none. OK, maybe a bit of the ol' firerhea, but even that hasn't been intolerable.

Johnny (and I) slept through the night even. That never happens on a chemo Tuesday!

He even ate dinner with us at the table tonight. My "World Famous Harrah Road Spaghetti".

I am just about to put my Toad in bed for the night, but I wanted to make sure I shared the good news with everyone. Please continue to pray for this Sancuso patch to continue with its magic. I know it will help his body feel so much stronger, and I believe it will help keep his lab values headed in the right direction.

I'm just so happy I could cry. Better get a glass of wine to celebrate instead. I'll just do it vewy, vewy quietly.

Round 4: This one is all Toad's #5

If you'll recall, Dr. Ansari started Johnny on an a new medicine to help with the "Anticipatory Nausea" after the rough start to the last round of chemo. It was mostly successful.

Johnny had a GREAT day yesterday (Sunday) . . . He looked good, he sounded good, he even moved around like himself (well, almost). I could tell the new medicines were kicking in. No nausea or vomiting last night in anticipation of today at all. No vomiting today until he actually had the port accessed. We talked this over with the good Dr. and it was decided to go ahead and double the happy pills and to maintain the overall use of Ativan for daily nausea/anxiety.

Dr. Ansari continues to be concerned with the overall amount of nausea that Johnny is experiencing immediately post-chemo. We tried the HABR cream and that only gave minor relief overall, and certainly not worth it's cost when others (covered by insurance) do the job as well. So, we nixed that one. This week we are trying the Sancuso Patch. It is a 5-day patch that is basically a Zofran-class anti-emetic. (We like Zofran.) Fingers crossed everyone. Also, instead of Pepcid OTC, he switched Johnny to the more powerful Protonix (a proton pump inhibitor, for you medical types out there). I think that will also help with the nausea, since it will cut down significantly on the amount of acid reflux he experiences. We are really hoping these are successful. Dr. Ansari would like him to stop losing weight (he dropped another 6 pounds this cycle) and I would like him to take the weight I have gained. If only I could donate to him.

Over the last several days we've talked about how much we would like to know if the chemo is working. We thought it would be about the first of June before a scan was done, but Dr. Ansari wants to know as much as we do evidently, so next Tuesday Johnny is having a CT scan. I am nervous and excited at the same time. I just pray that it shows some improvement, any improvement at all.

We were really happy today with his lab results. His liver enzymes came down a good deal, and his CBC levels went back up to the normal range. Last cycle I thought for sure we were looking at an impending transfusion. He has steered away from that for now. Whew.

Really, the only "bad" thing that happened today was that they tried to give him Phenergan for nausea before starting the chemo agent and it ended up making the neuropathy in his feet go crazy . . . think restless leg syndrome gone wild. He absolutely could not stop moving his feet and legs. It was pitiful to watch. Finally, after a couple injections of Ativan, he settled down and was able to fall asleep. Deep sleep. It was hard to wake him up for the filling of the pump. He basically dozed through that whole procedure.

So, now he is back home and in his own bed. He just asked for the remaining left-over Pete's Patio pizza and a Gatorade. That makes me happy.

Oh, and before I go, I want EVERYONE to mark their calendars for July 9-10. That is the date for the American Cancer Society's Relay for Life here in Niles, and we want everyone to be on Team Toad. This is the first time we have had a team in the event and we want to show them how we roll. Coincidentally, July 9th is Johnny's birthday, so you know we will have a birthday bash for him there. Also, it marks one year since his diagnosis. We would like everyone to celebrate along with us in his victory over colon cancer and his impending victory over liver cancer! We need team members to collect donations, walk the track, and hang out with us at Toad Central! More details soon . . . just mark your calendars and lace up your walking shoes!

Out of Bed

Finally!

I couldn't stand it any longer. Yesterday I hooked Johnny up via his port to a liter of fluids. He was terribly dehydrated and I gave him the ultimatum: I hook him up or we go to the hospital and they hook him up. I won.

It was definitely a Catch-22. His body needed the fluids so badly, but it ended up causing a raging case of firerhea. He was up most of the night, while we tried to catch that runaway train with Immodium. We caught up at about 6 in the morning. At some point in the night, my headache that started at work geared up into a full-fledged migraine. Great.

I slept in for a while after Johnny was finally settled and my head eventually felt better. Geez, you'd think there was a little bit of stress in my life or something. . .

Late in the day, Johnny started feeling a bit better and tried eating and drinking a little something. We will call it partial success. He did feel good enough to sit in the car in the outfield to watch Quinn's scrimmage baseball game. It was nice to see our baseball friends. . . and to be outdoors.

So, at least my Toad finally got out of bed and out of the house for a little while today. Just that little bit exhausted him and he has settled back in for the night.

I'm settled in, too. Right next to him. My favorite place to be.

Long Week, Sunny Weekend

It has been a very long week at our house. Johnny has been sick every single day since last Sunday. By sick, I mean some level of nausea/vomiting/diarrhea. He hasn't been out of bed since Tuesday, but things are looking up.

When he woke up this morning, I could tell he was feeling better and he even said he was. Although his body is just tired from the exhaustion of being sick for a week, he looks much better. He managed to eat and drink a little bit today without any yucks.

Since the sun is supposed to be out tomorrow, we are hoping to get outside for a bit and enjoy it. Of course, the Master's is on, so our time outdoors will be determined by tee off.

Thanks for the continued notes and cards and messages via Facebook. We love that even on the bad days we NEVER feel alone in all of this.

Keep praying that the HAI pump is doing its bizness and kickin' cancer booty, or liver as the case may be.

Taking the good with the bad

Long day at the infusion center yesterday, with a lot accomplished.

Johnny is having a really hard time anticipating Chemo Monday’s. It has gotten to the point that by Sunday night, his head has taken over and he is vomiting at the mere thought of chemo the next day. By the time we arrive at the infusion center and have his port accessed, he is a sick mess. We have talked a lot about this and he said he thought his body was just really getting tired of chemo. I told him I thought his body was probably just fine, that it is his mind/head/heart that is tired of chemo.

Our discussion with the doctor initially centered around Johnny’s liver labs. They are not good. As a matter of fact, they are getting worse. We had talked about this before our appointment and had decided that we didn’t care what the labs were at this point, we wanted to start using the HAI pump. We told this to Dr. Ansari, and he agreed. We know Johnny has liver cancer; we know it is aggressive; we know that we need to get in there and do whatever we can to address this mess. We told Dr. House in Indy that we wanted to be as aggressive as possible in response to the cancer. Since the liver enzymes have failed to go down, we thought it was time to fill the pump anyway and see what happens. We didn’t really feel like there was any reason not to, and certainly no other real options at this point.

We also talked about Johnny’s issues with chemo anticipation. It has become a pretty serious issue. So much so that Sunday night I slipped Johnny some of my anti-anxiety medicine just so he could get some sleep. I asked him in the morning if he was able to sleep, and after he said yes, I confessed. I know how well it works for me, so I was very happy that it provided some relief for him, too. Johnny has started on yet another medicine to help with the mental issues that go along with this chemo/cancer crap. I am actually taking the same thing, so I know it will help him. Better living through chemistry, right?

Then our discussion turned to nausea control. It has been a difficult thing to manage, and so random. We have yet to determine a pattern to his good days/bad days. This was a good lesson for us, because it seems that if you ask enough questions, there is always a pretty good solution. There is a cream called HABR that the Mar-Main Pharmacy in South Bend makes (also available at Merrill Rx in Mishawaka). It contains Haldol, Ativan, Benadryl, and Reglan. Yumm-o. Good stuff if you are severely nauseated. It is applied to the back of the knee, wrist, or elbow. They recommend the back of the knee so the patient can’t smell the stuff, even though it isn’t too bad. No sense in adding to the nausea. They also said that instead of using the Ativan prn (which means “as needed”) he should basically be using it around the clock. Ativan is an anxiolytic (anti-anxiety) with the added bonus of helping with nausea. Two for the price of one!

Once he was hooked up and receiving fluids (yes, I asked for a least a liter and a half) they gave him his regular anti-nausea med (Aloxi). Once they started infusing the CPT-11, the Aloxi wasn’t enough and they added IV Ativan. Good stuff. The vomiting stopped and he was asleep in about 60 seconds, no kidding. He slept through the remainder of the chemo (more or less) and woke for the official Filling of the Pump. There was really nothing new with that, because he has had it emptied and filled the last three times with heparinized saline solution. We were so happy when the FUDR was pushed in to the pump knowing that there is something infusing each and every one of those @#$%^ !@# tumors with toxic chemicals. Take that! I visualize that Musonex little green monster guy commercials when I think about it. If only it were that simple.

Last thing on the agenda before heading out the door was his monthly Sandostatin shot in the booty. He hates needles so much, and this one is a doozy. Plus, it is like pushing maple syrup into his butt, because the liquid is so thick. Poor thing, it really does hurt. I checked out the butt-smokin’ hot booty myself this morning, and it has a little bruise. I kissed it and made it all better. (Ask Quinn - - - I totally grossed him out!)

With all the added meds to our arsenal, last night wasn’t too bad. He had restless feet (from the neuropathy) but once they settled down, he had a decent night. Today (without jinxing it) has been decent, too. He was up for a good portion of the mid-morning, but has been asleep since about 2 p.m. and will probably stay in bed for the night. I keep loading him up on the meds, hoping that it will keep the vomiting away.

Johnny is a strong guy and will keep fighting this nastiness as long as he needs to. It is so hard to have the “what if” conversations, but we know that it would be really irresponsible to not talk about potential outcomes. We are both intelligent enough to know that it is better to plan for the worst and hope for the best. With that in mind, we have had some very serious conversations lately. Sometimes he initiates the conversations, sometimes it is me. More often than not, we both end up crying. Keeping in mind, always and no matter what: we will never give up. Even though it is so hard to talk about some of the issues we are facing, we can usually come up with solutions (even if they might only be temporary) if we talk them out. That is my point here: talk. The worst thing would be for each of us to carry our burdens in silent, not including the other. I worry about him as much as he worries about me. Talking makes it real, but it also makes it seem so much more tolerable when you have shared it with the one person you love more than life itself.

Neither of us can see the future or predict the outcome to all of this, but I can tell you one thing: I will love him forever.

Pumpin' #4

Short post due to exhaustion . . . will fill in the gaps tomorrow.

Here is the nutshell of today:

Lots of nausea/vomiting
Lots of IV Ativan
Lots of IV fluids
Lots of hours spend at the infusion center (9 1/2 to be exact!)
Lots of excitement as the Hepatic Artery Infusion pump was FILLED!

Bottom line: Cancer, your time is up. We are sending in the big guns and you should probably pack up and leave. Consider your eviction notice served.

Long post tomorrow to full of all the information your looking for!

Happy Easter

Hope everyone found all their Easter eggs while the sun was shining today! We had a beautiful day with lots of family and lots of friends.

Tomorrow is back to chemo. The anticipation is so difficult for Johnny. Just thinking about it makes him physically ill. That is tough to watch. We are going to talk to Dr. Ansari about that tomorrow. I hate that the anticipation ruins what could be a decent day otherwise.

Hopefully (and the main focus of our prayers tonight) is that the alkaline phosphatase will come down and we will finally be able to use the HAI pump. His level last week was 321. It has to be 180 or lower to fill the pump. If it isn't going to come down to the 180 mark, then at least we would like to see progression in the right direction.

One of our friends, Susan, wrote a poem for Johnny and I'd like to share it with all of you. And to you, Sue: Thank you so much! :)

There is a quiet man named Toad who has a heart made of pure gold,
and his character stands out in every way.
He does love to be outside; in a tree stand he might hide.
But, now his story must be told . . .
A loving husband and a friend to his Pam he's always been,
and to his sons and examples that is rare.
In this town they call their home, they'll not find themselves alone,
for we know that they are the perfect pair.
Now that challenge comes his way, Toad shows each passing day
that there is no mountain he can't climb.
As wee see him fight the fight through a hell that's dark as night
we know that he'll pass the test of time.

Same Ol', Same 'Ol

Really, nothing new to report.

Johnny has good days/bad days.  Good hours/bad hours.  It is just up and down with no real pattern.

Sometimes he eats and all is well.  Sometimes he eats and it all makes a return appearance.  We haven't been able to figure out any certain foods that cause him to be sick.

For the most part when Johnny feels good, he gets out of bed and gets moving.  He even took a field trip to Bowne today to say hi to all of his co-workers and friends (thanks, Larry!).  When he feels puny, he stays in bed and waits for the yucks to pass.

Hopefully the next week will be a good.  Looks like the weather might be good, so I'll get him out on the deck for some high dose sun therapy.

Totally off subject here, but if your team has not made it to the final four in the NCAA tourney, could you do me a favor and cheer for Duke?  I know, weird request, but if they win the tournament I have a chance to win 2nd place in our pool at work.  Yeah!  I have already planned on what I will buy with the winnings:  A 3-piece bistro set for the deck off our bedroom.  See, isn't that totally worth cheering for Duke? 

Enjoy the sunshine this week!

Super Day -- Well, mostly

I have to say I was really nervous about last night with Johnny being so sick at the infusion center.  But, after only about 8 hours, he quit vomiting!  He didn't sleep very well, but never had to get up because he was getting sick.  I really thought today would bring a bit more yuck, but NOPE!

Johnny ate really well today and so far (fingers crossed) has kept everything down.  He even walked outside for a little bit and went to the grocery store with me.  Are you ready for this?  He even made dinner tonight!


Wait . . . I spoke too soon.  Literally, as I was typing the previous paragraph, he walked into the bathroom and  . . . well, you know. 

He came out smiling, and said it was the PopTart he just ate, and that he feels fine.  We are still discovering what he can and can't eat after his gallbladder removal.  We aren't sure if it is the dairy or the high sugar content that bothers him, or if it is the chemo doing it.  Who knows.

Anyway, he did have a really good day so lets just go with that.

And now, back to the show . . . #3

Chemo again . . . Gah! Why does the time go so fast when you really want it to slow down and vice versa? Another of the great mysteries of the universe.

First, I have to tell you about the amazing weekend we had at the Korner Kottage Bed and Breakfast in Sutton’s Bay, Michigan. We were the guests of Jim and Linda Munro, owners and former Niles residents. Staying at the Korner Kottage was like going to your favorite relatives’ house and relaxing for the whole weekend. The kind of relative that means it when they say they want you to come visit and relax. The kind of relative that will have breakfast ready for you when you wake up, and a gourmet breakfast at that -- with the most awesome coffee machine on the planet. The kind of relative that is there for you if you need anything at all (like winery suggestions) but will let you do your own thing and sleep all day if that is what you choose to do. The kind of relative that has the best dog in the world (shout out to Nestle Quik!) that is sweet and friendly, but not over-the-top. The kind of relative that has all the really cool little details in every single room, and heaven-scented bed linens.  (We stayed in the Paris Room.) Yeah, it was just like that. Comfortable, warm, inviting, relaxing, amazing. And to top all that off, Sutton’s Bay is the sweetest little village. There are some great shops along the Main Street and a couple great restaurants, too. I can’t even tell you how many wineries there are in that area, but I know I counted at least 20 in the Leelanau Peninsula. We walked through town a couple times and ate at Gusto’s, an Italian restaurant within walking distance of the Kottage. (Think Pete’s Patio away from home) We also discovered a deli that had the absolute most spectacular smoked whitefish spread ever. Ever. Really.

If you have never had the pleasure of staying at a B&B, as we had not, put it on your MUST DO list. I think this may have just started a new hobby for us. It was so much more comfortable than any hotel we have ever stayed in and was so much more relaxing and enjoyable. The difference is in all the little details that a hotel just can’t provide. Really, if you are looking for a wonderful weekender for any occasion at all, call Linda and Jim. Seriously, call them. I’ll wait right here for you to get back to the blog.

Linda, we really missed seeing you, but Jim did an amazing job! We will definitely be back -- and sooner rather than later, I hope!

After our weekend away, it was really hard to think about starting up chemo again. Johnny had gained so much strength over the last week, that I didn’t want to see it drained away by the chemo, but we knew it had to be done and how important it really is.

His liver enzymes didn’t come down, but they didn’t go up, either. I think we have crested the summit and the labs will hopefully come down next time. They were 209, 298, 320 and today 321. I think we will start to see them come down, maybe not to where they need to be yet by next time but trending that direction. They have to be below 180 for them to fill the pump.

He did receive the systemic (port) chemo today and that was pretty rough. He was sick before we even left for home. He has been up and down since coming home, varying from sound asleep, vomiting, or singing old Alamo songs about Davy Crockett. I know, weird.

We had wonderful visits today at the infusion center. They have renamed the bed area that Johnny has been in the last three times as the Toad Lounge. My friend, Farid Jalinous (Dr. J), stopped in for a while, then Jeff Brawley and Tammy stopped in. Then a great surprise, Johnny’s chemo buddy from his first protocol, Carol, stopped in. She had her infusion with us in the Toad Lounge. It was so nice to see her and catch up with her; the last time we saw her was December 21st. I told Johnny just this morning that I had to email her because it had been a while, and I was thinking about her -- and there she was! Wonderful! Even my sister, Carla (HAPPY BIRTHDAY, BOOMER!), stopped in before we left. She works in that building for a pediatrician group.

So the day, although yucky for Johnny, went by very quickly. Ginger did manage to accomplish a good amount of crocheting, and I got some Kindling done. We asked for additional fluids again today, especially with him being sick so quickly. They were happy to give it to him. All of the nurses there are fabulous.

He is now in the tub and will go straight to bed when he is out. We have all of our “supplies” ready for the nighttime. Hopefully, his tummy will calm down and he will have it out of his system before going to sleep, rather than while he is trying to sleep. I hope, I hope, I hope.

Praying for a good night’s sleep, and liver enzymes that come down to an appropriate level. And for so much more.

HEY!  I just check on some of the comments from previous posts:  Dr. Yancey is that YOU that commented?  Oh, my gosh. . . how are you?  Are you eating properly?  Is anyone providing you with late evening snacks?  Are you taking care of all your minions?  We were so happy to see that you were checking on Johnny.  Incision is gorgeous!  And yes, there were 53 staples, to be exact.  Looks perfect!  Hope you are being appreciated appropriately by all the people you are helping. . . we certainly appreciated everything you did for us.  Take good care!

Temporary Interruption

We now interrupt cancer for an entire weekend!

The Fighting Toad and the Mrs. will be together and ALONE for the entire weekend.  Please don't come looking for us, we are hiding.

I'm so excited!

Maybe a little better?

OK, before you all start hollering about how long it has been since I last posted, I just want you to know that I am trying to protect you all from the redundancy of day-to-day life here at Chemo Central.

When I say that each day consists of nausea, vomiting, diarrhea &/or constipation, sleeping, and a freezing Toad, I am not kidding.  Just scramble up the order in which these events occur and you could have any given day, any given hour.

I will say that yesterday and today both have shown improvements.  Johnny has been much more wakeful than he has been in quite a while.  His color is a bit better -- still on the pale side, but pinking up.

Right now, I am wondering about his blood counts (especially the Hemoglobin and Hematocrit  --  components of the Red Blood Cells).  He has been super cold over the past few days and just can't warm up.  When I got home from work yesterday, I was getting dinner on the table and seriously thought I was having a "Waking Hours Hot Flash".  That would have been a new one to me.  Most of my "flashes" have been of the nocturnal variety.  Johnny was laying on the couch all snuggled up in sweats, a hoodie, and a fuzzy blanket. 

"I am roasting to death!" I tell Johnny.  "Did you turn up the heat, or something?"

"I might have," he admits from under the blanket.

Yeah, maybe.  I looked at the thermostat and it was almost 80 degrees in the house.  I am not kidding!  And here I thought my peri-menopausal crap had kicked into overdrive.  What relief.  And, I turned the thermostat back down to 68 degrees.

Progress is slow, but sure.  I hate that it is already Tuesday of Week 2 and Week 1 looms dark on the next horizon. 

The good news is we are getting away for the weekend  --  ALONE!  Our 22nd anniversary is on the 26th and we have been gifted a weekend at the Korner Kottage Bed and Breakfast in Sutton's Bay, Michigan.  We decided that this weekend would be the best since we are as far away from chemo as we can get.  How lucky are we?!?!  I have never been to a B&B before, and I am completely stoked to have Johnny all to myself for the whole weekend.  Thanks so very much to Linda and Jim Munro for this incredibly special gift.  It couldn't come at a more important time for us.

On a completely different note, please go to HERE and vote for the cute little redhead (#2565).  He is my nephew, Griffin -- Carla's little guy.  (This is a Cute Baby Contest that a radio station is putting on.)  Please vote once a day until March 29th!  I want him to win sooooo bad!!!   Thanks, I knew I could count on all my blog friends!  By the way, Carla is NOT happy with the picture that they posted.  They took the pictures at a Family Show at Century Center.  I guess they took several pictures and posted the ONE that he isn't smiling in.  No matter, he is still cute as a freakin' bug . . . so, VOTE!

Thanks for checking in on us.  It really does mean a lot.

Not Quite Perfected

What should I say about Round Two?  -- (keep it clean, this is a family show) --

My hope was that we had learned enough from Round One that we could conquer Round Two (R2) straight out of the starting gates.  Evidently, we didn't get everything right.

From the last post you know that R2 caused us to spend 8 1/2 hours at the infusion center.  Even though we couldn't fill the HAI pump, I still felt pretty confident that the extra hydration they gave Johnny was going to go a long way to improving things this week.  I also thought that the Sandostatin shot was going to be the blessing that Emend was with Protocol One (P1); it did start off that way, actually.

Tuesday and Wednesday were pretty similar to last round.  Nausea and vomiting started off late Tuesday night and continued through Wednesday night.  The Sandostatin shot kept the firerhea at bay, but also caused some slight constipation.  Obviously we needed to give him a little something for the constipation, so I went really slowly with the Colace. 

Fast forward to Thursday evening:  The vomiting has stopped (for the most part) but the firerhea has started.  We just can't seem to find a happy medium with the diarrhea/constipation.  Talk about frustrating.

I will most likely take Johnny in tomorrow for IV hydration.  He is starting to look a little green around the gills, and I don't want to put it off until Monday.  Waiting til Monday last time was a really bad idea.

So, if I could just ask for a few more prayers, I would really appreciate anything you could send up on Johnny's behalf.  This has been so much harder than we expected.

Long Day in the Land of Chemo #2

I think Dr. Ansari jinxed us with the first protocol of chemo.  He told Johnny he was "thriving" on it, but I'd now like him to eat those words.

Let me give you the run-down of yesterday in the infusion center.  It was a very, very, very long day.

Johnny's appointment was at 8:45.  We arrived and like every other time, he had his port accessed, labs drawn, and our visit with Dr. Ansari. 

Dr. Ansari was happy to see Johnny feeling significantly better than the last time we were in there.  Johnny's weight was steady, so no more weight loss was good. After discussing the seriousness of the diarrhea and vomiting from the first round, Dr. Ansari said that he would add a once a month injection called Sandostatin to combat the severe diarrhea.  Hopefully this will be as effective as the Emend was from the first protocol.

Then off to the infusion room.  Johnny was still feeling a little run-down and not himself, so he chose to lay in a room with a bed again.  I actually like it back there, so I didn't mind at all.  The only thing that bothers me is that he isn't being social in one of the only venues available to him during the week.  Maybe next week he will feel like being out among the people.

Before they started the anti-nausea med (Aloxi) I asked the nurse if they could hang extra fluids.  Normally when they run a piggyback med, they hang it with a 500 mL bag of fluids.  I asked if we could go with a full liter, possibly more.  I told them I was anticipating the dehydration that we went through before, and it made sense to me to get as much in to him as we could before it started coming out.  The nurse thought it was a great idea, so they ended up giving him a total of 1.5 liters with the Aloxi, Decadron, and CPT-11. 

We waited and waited for the liver function lab results.  When they finally came back, boo hiss.  His alkaline phosphatase was still too elevated.  As a matter of fact, it has gone up.  The SGOT/SGPT has basically remained the same, but within the range allowable for the HAI pump chemo to get started.  We have no idea why the alk phos is going up, but it makes me mad.  Really, really mad. 

To be perfectly honest, it also made me scared and while Johnny lay in the bed receiving the remainder of the fluids, I started to cry.  Fear and frustration are a terrible combination for me.  Always means tears. 

Johnny is always the voice of reason.  He reminded me that the original plan was 6-8 weeks after the pump placement was when they would start the HAI chemo.  So, technically we are only at 4 weeks post-op.  I know, I get that.  I just wanted it to start without any more issues.  Maybe we shouldn't have even looked at the labs yet. . . I don't know.

I plan on calling Dr. House to find out if there is something we should be doing/not doing to get the alk phos down. 

After the infusions were finished, we went through the emptying and re-filling of the HAI pump.  Johnny was still nervous with the procedure, but it was done and over in a couple minutes.  I can tell that it will continue to get easier and easier each time we go.  Several people were in attendace for yesterday's performance, because they want to get as many people trained as possible.  They, too, are anticipating seeing an increase in the number of HAI pumps with Dr. House being in such close proximity to South Bend. 

Finally, with everything else complete (I still haven't figured out why it took allllllll daaaaaayyy looooonngg.) Johnny got the shot in his butt for the Sandostatin.  We were out the door just after 5 p.m.

So, all of that was yesterday.  Last night Johnny had a little vomiting but not too bad.  He didn't sleep well, but didn't need to get out of bed much.  All day today he has been quiet and has had the on-again/off-again tummy ache.  No firerhea as of yet.  Vomiting has started back up late this evening, so I am starting to get a little nervous for the remainder of the night.  Praying hard that everything eases up and he will be able to get some sleep.  . . .sigh . . .

Please pray for a decent night for Johnny and that he doesn't get dehydrated.  Also pray that the liver enzymes cooperate with us and will be within an acceptable range for the next round.  We have decided to not even check next Monday; we will just wait the two weeks until his next scheduled systemic infusion.

Thanks to Amberg's for a wonderful dinner last night!

What We've Learned

Ok, that's it.  I am never going to admit that Johnny had a good day again.  Just when you think it is safe to go back in the water. . .

Last night was a doozy.  Seems there is this little thing called "rebound constipation".  Yeah.

Johnny's tummy started to feel tight again last night before bed, and he was just really uncomfortable.  We talked about the last time he had had any action "down there" . . . and I don't mean in the Biblical sense.  Potty action, you know?  It was on Wicked Wednesday, an entire week ago. 

In the meantime he had been significantly sick and dehydrated, but still thought that was a pretty long time to go without a poo.  I gave him some of the Magic Elixir at about 11 p.m. and waited to see if anything would happen.  He took a soak in the tub to try and relax, thinking that would help.  He took his p.m. meds in the hope that it would help him get to sleep, and hopefully in the morning something would be "moving". 

My poor Toad tossed and turned in the bed for the entire night.  He was doing figure-8s like a championship ice skater.  That would go on for about 30 minutes and he would get up and try to go again.  Back to bed, figure-8s, back to the bathroom.  Seriously, for the entire night.  While he was trying to find a comfortable position, I would lay still as a board so that in case he got into a good spot, I wouldn't ruin it for him by changing my position.  When he would fall asleep for a few minutes at a time, he would moan  --  it was pitiful and my heart broke for him.  I gave him some good old Sennokot around 2 and another batch of Magic Elixir at 3:30-ish.  At almost 5 this morning he has some minimal "success" and we both felt that he had probably turned the corner.

It was really scary from about 2 to 5, though.  I figured it was probably a bowel obstruction caused by surgical adhesions that had already started to form.  Probably wrapped tightly around the catheter connecting the HAI pump to the liver, too.  At one point I said, "Do I need to take you to the hospital?"  He didn't think we had gotten to that point yet, but I was completely serious.  He promised he would let me if he thought things weren't going to work out from the potty end -- so to speak.  Again, this is where a little knowledge can go a long way towards driving you insane, especially when it is the middle of the night.

Happily, things started to "move", and how.  I took the boys to school and when I came back, Johnny was comfortably sleeping in bed, exhausted.  I joined him and we both ended up sleeping until almost noon!  Obviously, he has been tired today, but overall much, much better than last night. 

And just think, in 4 days we get to start this cycle all over again!  I promise you, I have learned sooooo much in the last two weeks, and it is my solemn oath that I will do a better job with his next cycle.  Here the plans according to what we have experienced with Round One:

1. Hydrate, hydrate, hydrate all weekend long prior to chemo.  He won't argue the point with me this time, I'll bet.
2. Start anti-nausea, anti-emetics before arriving at chemo.  (Emend the wonder drug is contra-indicated with this chemo protocol, dang it.)
3. Start CPT-11 Imodium protocol at first sign of "tight" feeling in his belly.
4. If he has significant vomiting &/or firerhea this time, I won't even hesitate to take him in for hydration first thing in the morning.  I'm not playing the "wait and see" game this time!
5. As soon as vomiting/firerhea stops, wait a day and start Sennokot to avoid "rebound constipation". 
6. Push fluids.  Fluids are our friend.
7. Pray even harder.

The worst thing about this has been not knowing what to expect.  Now that we have an idea, we both feel much better able to get a handle on things sooner rather than later.  That is comforting.

What really makes Johnny feel good is the visits and phone calls.  He is such a social butterfly that being basically trapped in these four walls is very difficult for him.  Please continue to pop over for a chat or to ring him up on the phone.  If he has to cut the visit short because he isn't feeling well, then that is what he will do, but please don't NOT come over because you don't think you should.  He loves the company.  (Thanks for the visits today, Jeff and Dave!)

We will just relax and hang out over the weekend, anticipating Round Two.  I think the next round is ours.

Sunny Day

When the sun shines, everything just feels so much better, don't you agree?

After receiving fluids, steroids, etc., on Monday, Johnny has had a couple of pretty good days. Yesterday he ventured to Wal-Mart with me again (DON'T EVEN GET ME STARTED!) but that was pretty much it for activity.  Napped most of the day, otherwise.

Today he slept late but then got up for several hours, and even made his famous "Jake Steaks" for dinner.  The sparkle was back in his eyes a bit and he was even quite the tease today, which tells me he is feeling much better.  He is now sleeping on the couch, and in an hour or so will get up, grab something to drink and head to bed.  Nights are pretty early around here, which is actually quite nice.  I like a quiet house in the evening.

My greatest hope is that his liver is recovering and will be in good order for Monday (which gets here so fast!) and we will finally be able to put the HAI pump to work.

Since we are laying low today, not much to report.  Just wanted to let you all know that he is doing so much better and we appreciate the prayers. 

Much love to all.