You Guys are Great!!!

I guess it was pretty obvious by my last couple of blogs that I had hit a rough spot. I was just feeling so helpless, frustrated and overwhelmed..not to mention so lonely without Pat at home. I prayed for God just to carry me for a short while, because I really was stumbling. And guess what...I'm back. Thanks to God and all our wonderful friends and family. Just reading all the blogs and e-mails we receive, I can't help but perk right back up. You people don't realize how strong you keep us. The prayers, the well wishes, the gifts at my doorstep, and the people closest to me that allow me an occassional breakdown.....thank you, thank you. Pat of course barely batted an eye, he just keeps on keeping on. He is the true "Rock". The Dr. is now trying to switch him to a different trial, of course waiting on paperwork. His infection has subsided, his white count is coming back down and he is ready to fight on. Let's pray that this medication will start soon and get us to transplant. One of the gifts of this website is our ability to reach so many people. Tomorrow, Dave B.'s sister, Marianne will be undergoing surgery for breast cancer. Please include her and her doctors in your prayers. She is such a strong person and so positive, I have all the faith in her complete recovery. Thanks again to all of you, count your blessings and continue to "pay it forward." (thanks, Teri.)
xoxo,
Jules

Another Monday

Happy Monday to all our loyal bloggers. I wish I had great news to deliver, but so far Pat's counts have not shown any response to this treatment. To say we are frustrated would be an understatement. Maybe it just needs more time or a stronger dose, I really don't know. I'm sure the Dr's are just as frustrated. Pat is such a great patient, the nurses all love him, he is so easy to take care of. I received St Theresa's prayer today...perfect timing. I am right where I should be, doing exactly what I am supposed to, waiting faithfully. I will take a deep breath and pray for the answers to come, when the time is right. Sending out prayer requests for Pat's white count to come down and of course for the leukemia to .....GO AWAY!
Love and blessings to you all.
xoxo,
Julie

"Please just go away"

"Please just go away." I don't know how many times I repeat that phrase every day in reference to leukemia. I wake up hoping every morning that today will be the day we hear that the leukemia has been wiped out. I am starting to get angry and I don't want to go there. I don't want to step out of my positive energy, but somedays are harder than others. I watch Pat battle and battle this hideous disease and some times I feel like he's a hamster on one of those spinning wheels. This round of chemo will end about 6pm tonight. Please take a moment and pray extra hard around that time...let's send a mega prayer to God, I know he'll hear us and take care of us. Hopefully Pat will get to come home early next week and spend a few days at home before his next round of chemo. Have a great weekend, and many thanks for all your prayers.
Love,
Jules

A Special Day

Twenty four years ago today I walked into the El Torito in Laguna Hills and saw the cutest guy sitting in the bar with a group of friends. I quickly pointed him out to my friend and wasted no time introducing myself to him and inviting him to a party. He reluctantly agreed, of course I didn't give him much choice because I was sitting on his lap. As we were about to head off to the party I think he was having second thoughts and tried hiding out in the bathroom. Silly boy, he didn't realize yet who he was dealing with. I camped myself right outside the men's restroom and waited patiently for him to exit. Well, the rest as they say is history. I reminded Pat today that it was our first meeting "anniversary", and told him I am so glad I walked into that El Torito and he replied "me too." Now with Pat's chemo started, he and I along with our children and all our family and friends wait patiently for the leukemia to exit. And wait we will as long as it takes...be it days, weeks or months. Silly leukemia, it doesn't realize who it's dealing with. Keep praying. Love and good health to you all.
xoxo,
Jules

Short But Sweet

Well friends and family, Pat is back in the "slammer". We went in for what we though would be a quick appointment this morning and were told that Pat needed to be admitted. He picked up some "bug", thus the reason for the fever yesterday. Pat didn't even bat an eye, he just said.."I'll do my time." So we spent the bulk of the day in ETC (an emergency type room) getting IV antibiotics and waiting for them to clean our room on the 5th floor. Chemo was pushed back until tomorrow because of this freaking infection. This afternoon the Dr said she didn't expect him to be out for long anyway, she just didn't tell us that! His immune system is just too vulnerable. Before knowing he was going to be admitted, Pat wanted lasagne for dinner, instead he had tapioca pudding, an orange and gatorade. He hates hospital food, can't say I blame him. I feel like I hardly blinked and I'm at home once again without my best friend..one of his best friends (Dewey) however has his head on my lap. I am so thankful for Pat's will and determination, my love and admiration for him has such a richness that I've never known until now. I believe that is one of cancer's "gifts". I do need to thank everyone for all their inspirational blogs, my Mom made me cry but they were happy tears. To every person who has donated platelets, you're awesome, they are pumping through Pat's veins everyday!!!! Good night I am exhausted and feeling just a little lonely, but tomorrow is another day and I will pull myself up by the boot straps and march on. Please pray for Pat and his healing.
xoxo,
Jules

A Day In the life of The Smiths

I should know by now that we don't get throught a day unchallenged. When Pat woke up this morning I took his temperature like the good nurse that I am and it was 100.9. Anything over 100.5 requires us to call the hospital. So, we did, and of course they said bring him in. Well by the time we got there his fever had subsided, thank goodness, but he needed platelets. Our plan for the day was for Pat to attend Brock's soccer game at LMU at 2:00pm....WE MADE IT!!!!! What a gift it was for Pat to be able to see Brock play. At the end of the game the whole team came to the fence and Brock presented Pat with a LMU jersey autographed by the entire team. Needless to say I was a blubbering baby and Pat was truly touched. A moment to cherish. Pat was also able to see Chloe looking all dolled up for her homecoming dance last night, she was thrilled to have him here,...we have pictures of both of these memories and we will share them with you all on the website later this week. I don't think I've taken a deep breath all week, I am so nervous about making a mistake with Pat's meds or not being able to take care of him in the same capacity as the City of Hope nurses. I am driving him crazy, asking every 5 minutes if he is okay. Tomorrow we start the next round of chemo....please pray for it's success and for Pat to continue to battle like the warrior he is. And I know you all pray for the kids and myself and at this time we really need it, I'm starting to see cracks in our armor. This is a very tough battle, it's time to bring out the big guns. Our love and prayers to all of you.
xoxo,
Jules

Happy to be Home

I can't tell you all how wonderful it is to have Pat back at home. His dogs have not left his side! I think this will be the medicine of all. I did have a momentary break down yesterday when I went to the pharmacy to pick up his meds. They handed me 22 different prescriptions! The pharmacist said that was a new record, what a record to break. Chloe and I spent the evening organizing all his medication into one large weekly pill dispenser, we've got it wired. We were back at City of Hope today for platelets and some hydration, but tomorrow we have the whole day off. I do have to ask, and only because I know I can....I need all our prayer warriors to get busy. Pat's leukemia has not responded yet to this new treatment. Dr. Zain said it may take more than one treatment and she is not yet overly concerned. Maybe I am expecting too much, but I just want my husband to get better....all the way better. I did find peace in my Aunt Mary's blog which said God is seldom early, but he is never late in answering our prayers. I know in the depth of my soul Pat will be cured, and that I must remain faithful and patient.....sometimes it's just so freaking hard. Waking up next to Pat was a gift, for that I am thankful. Good night to all our loved ones and be thankful for your gifts.
Love.
Jules
P.S. Aunt Marcie, you are so welcome for the gift. Thank you for all your prayers and inspiration.

We're Outta Here!!!!!

Last night when my parents picked us up from the airport, I told them I would be praying for some good news today. Well we got it. Pat is going to come home tomorrow for hopefully a couple of weeks and continue his chemo treatment as an outpatient. He is so happy. We still will need to return every other day for blood and platelets...but who cares? Pat will get to sleep at home, eat at home, watch TV at home, hang with his kids and see his four legged kids. With his immune system still so vulnerable we have to ask that he have no visitors yet and no food brought over. His diet will be very limited and the manner his food is prepared is very strict. You know I'd love to have you all cook, but it's just not safe at this time. Chloe and I had such a great weekend, unfortunately LMU didn't fare so well, but it was still great to see Brock. I used to think Chloe was just being a great sport accompanying me on these trips until duh....I caught on, what 17 year-old girl wouldn't want to spend the weekend with 17 hot looking soccer players? To everyone who took time out of their busy lives this weekend to spend time with Pat, a huge THANK YOU!!! Pat said more than once that all his visitors helped make the weekend go by much quicker. It made it so much easier for me also, knowing he was well taken care of. Thanks to Brady for holding down the fort at home and hanging out with Pat. Today I ask for your prayers that Pat's transition to home goes smoothly, that his bone pain subsides, and last but not least REMISSION!!!!! Your prayers along with his never ending strength and will to survive have gotten us this far, we couldn't have done it without each and every one of you. The response to our call for platelet donors continues to amaze us, Pat is very touched by the outpouring of support. Tomorrow night I'll sleep a little more soundly knowing Pat is right where he should be...at home.
Love and appreciation to all those who love and protect our family.
xoxo,
Jules

All's Good

As we move into the weekend Pat is doing well. He has not had many side effects other than some bone pain, which the Dr says is good, because that means the chemo is attacking his bone marrow. Chloe and I are headed to Spokane tonight to cheer on Brock. LMU will be playing Gonzaga tomorrow, then we go to Portland on Saturday to take on University of Portland. To everyone who will be holding down the fort for me while I'm gone a huge THANK YOU!!!! I do have to make it very clear to anyone that would like to visit, if you have even the slightest sniffle please wait until you are better. Pat's counts are extremely low right now because of the chemo, he has no immune system. A cold that you or I can fight off is life threatening for Pat. I will also ask that visitors please feel free to nag Pat about doing his breather, he'll know I'm behind it....but I don't care. He has to do it to keep his lungs clear and avoid pneumonia. The response to platelet donation has been amazing, you guys are awesome! Well it looks like Chloe and I have talked Pat into a walk so I'd better sign off before he changes his mind. A great weekend to all our friends and family, we love you all. Keep on praying!!!!!
xoxo,
Jules

We're On our Way

Last night at 6:00pm Pat started his chemo.....Yeah!!! It will run continuously for 4 days. So far he feels fine, no side effects. He worked out in the group exercise class today and plans on going again tomorrow. I had the opportunity on Sunday night to attend a wedding on Pat's hospital floor. A 19 year old female patient was married in the waiting room on the 5th floor. She looked beautiful in her wedding dress and we all lined up in our mask and gloves and cheered her as she walked down the "aisle" from her hospital room to the waiting room. Just another example of the determination of cancer patients not to allow their disease to control every aspect of their lives. A big THANK YOU to everyone who has signed up to donate or has already donated platelets. I realize it is a big time committment, we are so appreciative. Thanks Dad for getting the info out to all the AHAB employees and for AHAB's offer of transportation. Let us all direct our prayers for Pat to continue his treatment with no side effects and for this chemo to do it's job and knock this leukemia out!! God bless you all.
Love,
Jules

Super Sunday

Pat is feeling great today, relaxing and getting ready to tackle leukemia head on tomorrow. Thank you so much for the wonderful response to donating platelets, I knew we could count on all our amazing friends and family. I have such a positve feeling about Pat's recovery, he has shown such resiliance. As we all know cancer is mean and nasty and has once again reared it's ugly head in another member of our extended family. Dave B.'s (pat's brother in-law) sister Marianne, has been diagnosed with breast cancer. She will very soon be having surgery, followed by chemo. Please include her in your prayers for recovery. She along with Pat will prevail by remaining positve and leaning on all those who love and care for them for support. I'll end with some Happy Birthday wishes to Becky, Erin, Beau, Gavin and Nolan! Make it a great day....and here's to a week of wellness and lots of leukemia butt kicking.
xoxo,
Jules

A Way to Help

You have all been so generous with your prayers and good thoughts, for this we are so thankful. Many of you have asked if there is anything you can do to ease our struggle and an oppurtunity has arisen. The Blood Donor Center phoned me today and asked if any friends or family members would be willing to donate platelets for Pat because he is needing transfusions daily. It is not necessary to have the same blood type as Pat in order to donate. If you are interested the phone # for the Donor Center is 626-301-8386. You need to make an apointment and let them know you are donating for Patrick Smith. Pat is feeling fine and is doing his best to be patient while waiting for his treatment to begin. Thank goodness for playoff baseball!!! I guess all we are waiting for is the okey dokey from the insurance to forge ahead. All your blogs are so uplifting and help to keep Pat's eye on the prize. We are such a blessed family to have so many people who love and care for us. Our prayer tonight is for the treatment not only to begin but to be a success, and for Pat's never-ending strength. Love and a good night to you all.
xoxo,
Jules

It's Never Simple

Are you all ready for this?? The trial Pat was supposed to begin has been put on hold due to an amendment in the way it is written. It has nothing to do with Pat it is all political. The people who write these trials obviously don't treat patients. But to backtrack a little....this morning all Pat was told by the nurse was that the chemo had been put on hold, no explanation. Pat and I sat in his room until 4:30pm, in complete silence so anxious and secretly fearing the worse. I don't think either of us took one deep breath the entire day. When the Dr came in she explained about the cancelled trial and told us there is another one that she feels will work just as well. She said we can start as soon as Thursday, and that the cancelled trial should open back up in two weeks if we need it. If you're confused, you are not alone. All I keep repeating to myself is "live by faith, not by sight." Surely our guardian angel (aka Barte) is looking after her son...mothers never stop protecting their children. Other than that everything's great!! The Dr is pleased with Pat's counts, she said he is quite stable, more than I can say for myself. After all that news I fell into Pat's arms and cried, I told him I was so scared. He told me not to worry, he's not going anywhere, he has too much to do. That's my guy, no quit, staying positive and keeping me strong. So there it is...our ride continues. Let's all keep praying, it's the best medicine of all.
Love,
Jules

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

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

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

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

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

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

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