Saturday, September 29, 2007

Things Can Turn on a Dime

All I can say is wow....what a harrowing day we had yesterday. Things seemed to be going along fine, that was until they decided to give Pat an asthma inhaler. We found out the hard way that he has an adverse reaction to albuterol. Instead of it opening up his airways, it constricted them and sent him downhill quickly. He could barely breathe, they had to put him on oxygen, doctors and nurses were flying in and out of his room trying to stabilze him, to say I was freaking out would be an understatment. I stepped outside the room so Pat couldn't see me, had a good cry with his doctors, told them in no uncertain terms to NEVER give up on Pat and then splashed cold water on my face and went back in. The doctors agreed that Pat is tough and even dubbed him "the Energizer Bunny". Two hours later the "bad medicine" wore off, they removed him from the oxygen, his breathing returned to normal and my old Pat was back. Of course I knew he was back when he "jokingly" blamed me for his attack because I had made him get up and walk earler in the day. This ride is definitely a "white knuckler" and I look forward to the day when we can get off!!!! Once again please continue to pray for Pat's never ending strength and endurance, and for the wisdom of the doctors to heal him once and for all. All he looks forward to is coming home...I thinks he's earned it. Love and good health to all our friends and family.
Love,
Jules

Thursday, September 27, 2007

So Far So Good

We're still here with not much change, which is okay by us. Pat had a chest x-ray today and Dr O' Donnell said it looked better, definitely not worse...good news. I literally am counting minutes until Tuesday, knowing that every minute that passes and Pat stays strong is one minute closer to treatment. I see how fragile people are in this condition and I'm so thankful Pat has the heart and soul of a fighter. I know I've said it a hundred times but faith is such a strong ally, without it I would be lost. The faith that you all have in Pat amazes and comforts us more than you will ever know. The kids are doing well, they have stepped up to the plate in so many ways, I am so proud of them. I have started my own social circle here at City of Hope (I'm sure you are all shocked!), I go out of my way to meet new people and hear all their stories. My newest friend is Claire, her husband also has ALL. They live in Las Vegas and had to move their three teenage kids here and enroll them in school out here. As I have said before there may only be one person lying in the hospital bed but the whole family has the disease. I really helps to have a support group here at the hospital, it can get rather lonely. As we move towards the weekend let's pray for Pat's continued strength and positive outlook....one day or one minute at a time.
Love you guys,
Jules

Monday, September 24, 2007

Another Curveball

Well they just threw us another curveball. Apparently Pat was given a drug last week that needs a 14 day flush before they can start the clinical trial. That puts our start day at next Tuesday at the earliest. You'd think we'd be shocked or upset but surprisingly we both are relatively calm. We realize there is a reason for everything. Maybe this will give Pat's heart a chance to get even stronger or a multitude of positive changes. You truly learn to expect the unexpected and try to remain on an even keel. Believe me I'm not saying it's easy, it is definitely a learned process. I know we are being looked after by much higher powers and special angels. If it's true that patience is a virtue, than I believe Pat has patience to spare. He is my inspiration and everything in life that is real has been exposed behind the door of room 5135. Thank you for your continued prayers and support.
Love,
Jules

Sunday, September 23, 2007

Let's Go Get It!!!!

Okay we're ready and raring to go!!! Tomorrow Pat will start what we pray will be the last round of chemo before his transplant. In preparation he is at this moment chowing on a corn dog and enjoying a Nascar race. Mentally he is pumped up and wants to get on with it, physically he ain't looking too shabby either. He has started to nag me again about how clean my car is and about how things are going at home...Pat is back!!!! It is great to hear on the blog from people who have gone through similar situations, you do so much to keep our hopes strong, thank you. A special thank you to Brady and Chloe, who at this time have to deal with my roller coaster of emotions when I get home at night. Sometimes fatigue and lonliness tend to get a hold on me and they are a soft place to fall. Brock, because he is away at school isn't witness to all my highs and lows, lucky dog!!! Just kidding, I'm sure it's just as difficult to not be in the thick of things. I want to thank all the AHAB employees for keeping the ship upright and for all you prayers and kind words for Pat, I know it means the world to him...you are his home away from home. Family and friends let's get to praying that this is it, that this is the potion that pushes us forward! LET'S GO GET IT!!!!!!! Love and appreciation to you all.
xoxo,
Jules

Thursday, September 20, 2007

Marathon Man

Pat has now been patiently and courageously lying in his hospital bed for 9 weeks and I day. So, after the Dr explained that what his body is going through to fight the leukemia is like us running a marathon everyday I nicknamed him "Marathon Man". Thank God that today he is feeling well, eating much better and he's in great spirits. His regular Doctor is gone for 10 days so we have Dr O'Donnell which may be a blessing in disguise since she is one of the leading doctors in the country on ALL. Pat really likes her, and it looks like she moved the start of his treatment up to this Monday...that is great news, he is more than ready to get a move on as you could imagine. His heart is still only working at 42%, which is a direct result of the chemo and the stress his body is under. The cardiologist is working to get it up to 45%, which is where they'd lke it to be for the transplant. Your prayers are most definitely working, thank you so much. Gotta run, Pat is ready to start his laps!! A great day to all of you.
Love,
Jules

Tuesday, September 18, 2007

What we know today

Okay here's the news for Tuesday. It looks like we will be able to start the clinical trial one week from next Monday...so basically in two weeks. In the meantime the Dr has stumbled across a drug that she may be able to start tomorrow that has showed some promise in ALL patients. She needs to do a little more research to make sure it won't disrupt our ability to enter the clinical trial, more news on that tomorrow. The great news and the answer to our prayers is that we can receive treatment here. Of course we'd go to the moon if we had to, but I really prayed to keep us local. I didn't want to leave our children while we left for who knows how long, it was scary...Chloe needs her mommy!!!(I'm sure she'd beg to differ) More than that, I need my kids, they keep me focused on the prize....a healthy Pat!!! Here's what's on our prayer requests for today, Pat's strength, his heart to continue to get stronger, wisdom for all the Doctors treating Pat, and continued courage and faith for my children and I. Love, Hope and Faith to all our friends and family.
xoxo,
Jules

Saturday, September 15, 2007

Waiting Game

Day 59 and we are still waiting. It looks as though the clinical trial will be pushed back a bit due to complications with a patient already in the trial. Pat is looking and feeling better, the pneumonia seems to be improving. We literally are in a race...trying to keep Pat as healthy as possible until they can knock him back down with the next treatment. The concern is that the leukemia will continue to multiply before we can treat him. We are looking into the possibility of receiving treatment at another hospital and returning to City of Hope for the transplant. Dr. Zain said people travel all the time for treatment. Of course, Pat would rather not travel but he realizes we have to do whatever it takes to get him better and back with his family. He is a trooper, I truly don't know how he does it. I asked Pat what he has learned most from this experience and his response was "patience". He really enjoys hearing from all of you on the blogs. It's the highlight of his day. You never realize how much people care for you until times like these. Isn't that sad? I'm as guilty as the next of not letting people know how much they mean to me. I hope that is something I take away from this whole thing, the wisdom to take the time to make sure my friends and family know how much they are loved. I'll start right now!!! You, my dear friends and family have kept us afloat, your genuine concern for Pat is overwhelming. Thank you, thank you. Pray today for the leukemia to lie quietly and wait for us to beat it's butt. For Pat's strength, and for the Doctors to come up with a plan. Enoy your weekend. Much love.
xoxoxo,
Jules

Thursday, September 13, 2007

The Battle Continues

Well, unfortunately we've hit another bump in this seemingly never ending road. Pneumonia has reared it's ugly head again. We are waiting for his bronchoscopy results to see what strain of pneumonia it is so they can treat him with the correct antibiotic. We are planning a trip downstairs and to the outside today...yeah!!! I think it will do Pat good to feel the sun on his face and breathe some fresh air, he hasn't been outside in 57 days. Words cannot describe how proud I am of my husband, he refuses to give in to this disease. I am so often asked where do I get my strength from, of course family and friends have been amazing, but Pat is my rock. Every night before I leave I make him look me in the eye and we repeat the same thing,"we will get through this." Faith, faith and more faith.
Brock is in St. Louis for soccer and Brady and Becky have gone along to support him. I'm glad Brady is getting a break, he has been such a pillar of strength. So it's girls weekend for Chloe and I, we'll visit Pat and maybe sneak in a pedicure. I want to apologize to all of you who call and I haven't returned your calls. Please understand all my energy is focused on keeping Pat strong and my children's lives moving in a somewhat "normal" fashion. I'm not ignoring anyone, it's just so hard to repeat the days happenings over and over. That's why this blog is so great, I can reach all of you. To everyone out there praying for us, please pray for Pat to fight off this pneumonia and to stay mentally strong. We are so grateful to have such a circle of faith, hope and love around us. Until next time...love and good health to you all.
xoxo,
Jules

Monday, September 10, 2007

I'm Baaaack!

Well the big boss is back in town. I truly enjoyed my weekend in New Mexico with Chloe. It was just the shot in the arm I needed to get through the next few weeks. LMU went 1-1, but they beat New Mexico which was huge because they are highly ranked. Brock didn't play as much as he would have liked, but he realizes he's the "new kid on the block" and has to pay his dues. I really missed Pat, but I knew he was in great hands. Thanks to all his visitors, I really appreciate it and I know Pat was probably glad not to have me nagging him.Things seem to be okay right now. Pat has developed a little cough. The Dr. believes it's because he's using his lungs more and the cough is a result of them expanding. They did a chest cat scan today so we'll probably hear more tomorrow. My prayers continue to be for strength to get to the clinical trial. Keeping Pat strong is so important. The days seem to last forever for me, I can only imagine how never-ending they are for him. Pat's watching Monday Night Football right now and resting after his daily work-outs. Your on going prayers are so helpful, please pray for Pat to get over this cough and to have a relatively smooth 11 more days until his next treatment. Love and appreciation to all who have touched our lives and keep us in their thoughts.
xoxo,
Jules

Friday, September 7, 2007

Sister Day!

Today Pat gets the company of his 3 beautiful sisters! Jules you will be very happy to hear that your husband completed 3 laps around floor number 5 and he worked out with the physical therapist. What a day! He looks great and we are having a great time chatting and sipping our Coors Light. He only had one sip Jules...hope that's okay! We are putting the straws under our face masks! (haha) All jokes aside...everything is great in room 5135. Pat says Hello to everyone and good luck to Brock in New Mexico! GO LMU!!!

Love,
Cindy, Sandy, and Maribeth

Thursday, September 6, 2007

Staying Strong

Hi to all our wonderful friends and family. Glad you all enjoyed Pat's new picture...a special thanks to the Meany's for that cool hat. Things are actually pretty mellow right now. We are just "patiently" waiting to begin the clinical trial. They are treating Pat with IV antibiotics to make sure he stays infection free, and every couple days he gets blood and platelet transfusions. He works out 2 times a day with the physical therapist and takes 2 laps each day around the unit. Boredom has definitely set in, but sometimes no news is good news. Chloe and I will be flying to New Mexico in the morning to watch Brock play soccer. Brady and Pat's family will be holding down the fort. They'd better not let him slide on his walking, or there will be trouble when I get back! My faith grows stronger everyday that we will dig ourselves out of this. Faith is a wonderful thing. Keep on praying and blogging....you all are our lifeline. Have a great weekend and remember "there is always hope."
Love,
Jules

Monday, September 3, 2007

The Journey Continues

Hope everyone had a great and relaxing labor day weekend. Pat is hanging tough, feeling stronger everyday. Once the chemo leaves his system he is a different person. That chemo is some nasty stuff, it has no mercy, but you gotta do it. I just drove through the gates of our neighborhood for the 48th straight night without my husband. I miss him like crazy. Cancer is taking it's toll on all of us. Pat lies in the bed and fights it with every ounce of his being. At 99 Fairlane we fight it with all we can muster. Some days are just tougher than others. The love and support we get from family and friends is our safety net. Without it I can't imagine where we would be. The little things mean so much to me these days. Chloe holding my hand every morning when I pick up the phone at exactly 8 am to call Pat and see how his night was. All my children are showing so much concern not only for Pat but for my well being. They refuse to leave me at home alone not even for an hour. I am blessed with so much love.....thank you to everyone. We will beat this disease and be that much stronger after the battle. Cancer came knocking on the wrong door.
Love and good health to you all.
xoxoxo,
Jules