It is with much regret that I tell everyone that Jason is not doing well. He had a procedure Monday to remove an infected port-a-cath and afterwards has had issues with bowel obstruction again. What this means condensed...we are back to the beginning. Back to where the hospice journey began. Ive had a sickening feeling in my heart for about a week and I just feel like this might be the end of the road. Granted, we have been here before and God gave us the miracle of time. I can only hope and pray for that again. The only caveat to that prayer is who exactly I'm praying for and who it is benefitting. Jason has fought this battle arduously and with great optimism. Until recently he has been that way...now he is tired. He is tired of hurting and of having to rely so much on others for his daily care. It pains him to not be able to participate in life the way he's used to and he just wants to feel normal again. If love could fix him, he'd be fixed...we all know that. But God has other plans...don't ask me what they are because I haven't a clue. I only wish I could understand. So, this will be my prayer.
(It is easier for me to write this now because I don't know if I'll have it in me later. )
Please send your Holy Spirit down upon Jason and our family. Wrap him in your heavenly mercy and love. Comfort him with your fatherly warmth in both his waking and restful hours. Hold him in your arms and take away his pains, his frustrations, and all of his worries. Love him as only you can and let him feel the strength and power of that love.
Please give our family the strength to be strong for Jason through these days. Give us smiles to replace our tears and happy thoughts to replace the sad memories that cancer has left us with. May we always remember and be ever thankful for the time we have had together. Time no one said we would have, but were blessed with by your grace alone. We know that it is not from this physical world that we come, but from our true home in heaven. And that we will all be called home to you at some point in this journey of life. If it is time for Jason to come home, please greet him with open arms. Please allow his most beloved friends and family that have gone before him to show him the way and keep him in line! ;) We also know God that there is no sorrow, no pain, no time in your heavenly home. Jason will know he will see us all soon...as if no time has ever passed. However, those of us left behind will feel the pain of physical time. Please grant us the strength to remember his laugh, his touch, his courage, his loving nature, and give us the courage to go forth with life sharing the gifts Jason will leave with us all. Just as Jason wants us to. We thank you for keeping Jason with us this long and we are all blessed to have borrowed time. Please keep him with us as long as Jason wants and needs to be here. For this I pray with my most sincere heart.
This is my prayer tonight...it is written from my heart and it is how I feel I've prayed for a long while...I hope it will be yours as well.
Thank you for all the prayers thus far
Sorry it has taken a while for me to write any updates! Spring semester has started for me again and between taking care of the boys, homework, tests, and working out going back to work I've been pulled ten ways from Thursday! So...here goes.
Jason had a difficult recovery period after his most recent hospitalization. He was diagnosed with sepsis, which is an umbrella term for a very serious bloodstream infection that has created systemic effects, and became deathly ill. He was given aggressive iv fluids, blood, and antibiotics. After a week or so at home he started to improve little by little. Then this past week we all got sick with whatever this nasty bug is that's going around. Beckett had horrible fevers and respiratory problems, which Jason inevitably got. My body was able to fight through the respiratory stuff but unfortunately I got the stomach portion of that bug. It was not pretty for any of us! We pretty much quarantined our house, took baths in Lysol, and drank green tea and mucinex like it was goin' out of style! Jason is still somewhat sick, battling the chest congestion, but hopefully he will kick it soon! I made sure he was on antibiotics quickly and started him on breathing treatments, decongestants, etc right away so I'm hoping that helped. We shall see. He still battles pain on a daily basis with the pressure in his pelvic area being the worse. He had a nerve block performed on Christmas Day and it helped somewhat, but we may be looking at needing to do that again. Jason really doesn't want to do it because he says it hurt, but if it helps as much as it did the first time it's worth it. Jason understands that too and we will just have to see where this goes.
Now the serious, mushy stuff...
Jason and I have talked a lot about the past lately. Some of it is reminiscing on fun times while other times it's a deserperate inward attempt to mentally retrieve those days again. We look at pictures and Jason doesn't see 'Jason' anymore. He sees someone that is frail, thin, and has "tubes everywhere". He sees someone broken. We've spent a lot of time, usually at night after Beckett is asleep, talking about that. I listen to his frustrations, his tears, and I cry with him sometimes because I feel frustrated too. But then I remind Jason of what I see. I see my best friend. I see a kind, genuine hearted young man that loves me with a passion unparalled. I see a fierce young man who looked defeat in the eye and has refused to lose the game to cancer's rules. I see the person I love unconditionally. I see the person that, one day, I will have to love enough to let him go. And I pray every day for that day to be a long ways away. But at the end of the day I still see Jason...my Jason. Just the way I've loved him for all these years! Always have, always will!
And Jason usually apologizes to me, "I'm sorry you have to go through this. If you wouldn't have met me, you wouldn't have to deal with this.". And I understand that too but I would do again in a second. There have been so many good things that have come from this journey. Beckett being the biggest blessing of all! Any other choice or path I could've chosen would never have ended up with that little angel being in our lives. He has made some of our darkest moments brighter and has given me reasons to smile when I didn't feel as if I'd ever smile again. I wish I could have the same life, same people, just different circumstances. Cancer sucks...take that away! All I know is that God has a great plan in action here. I've struggled with that thought for a long time now...succumbing to God's plan and praying for that instead of my own plans. But it says so in our Lord's prayer, "thy will be done on Earth as it is in Heaven"...thy will, not my will. No matter how much I want to change it, my plan could never be better. Because God sees things we cannot and puts things in motion to bring us closer to Him. "The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs- heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him." Romans 8:16-17.
Keep praying! We feel it and we need it! Pray for better days of comfort specifically for Jason and days where he can spend some time with Beckett. Beckett really wants that. Breaks my heart to see him miss out on it. No kid should have to endure this kind of pain but Beckett is tough and he is doing ok. Just pray for my boys please! Thank you to everyone that has donated so far...it has made a huge difference in Jason's care.
Sorry it has taken so long to post additional updates. For those of you that are Facebook followers you know that Jason was admitted to the hospital over the holidays; both on Christmas Eve and then again on New Years Eve. Long story short...his confusion (which I repeatedly tried telling people) was a result of a kidney infection and not terminal restlessness as was previous thought. Since then he has had a long course of antibiotics and was given IV fluids and blood during his hospitalization and is doing much better now. He is no longer confused and aside from severe lymphedema (swelling of his legs caused by impaired lymph node reuptake of fluid) he is doing much better. Thank you to everyone for the prayers and for those that were able to make it to the hospital to see him. He has given us so many "near death" scares it's unreal, but Jason is a fighter and he is resilient. His doctor even said Jason was like "a cat" with all these scares it's like he has nine lives! It's humorous now because Jason is doing better but I fear the number as it gets closer to nine.
I was talking to a friend the other day and the subject of marriage and marital trials came up. Things like: How can you even bring yourself to do half the things you've done for Jason? How can you change his dressings and stick him with needles? Doesn't that just break you heart? Is it lonely to not have date nights? Stuff like that. I find it eye-opening of just how different my life has become when I talk to other "normal" people. The things I do everyday and hurdles we jump through have become our "normal" and we don't dwell on it too much anymore. It's just something we have to do, so we do it. And most of the time we try to do it with a smile on our face even if our hearts are breaking. And besides, what is "normal" anyways?! So my answer is simply another question, what wouldn't you do for someone you loved? What mountain wouldn't you try to move? For me there is nothing I wouldn't do and no mountain I wouldn't try to tackle to do what needs to be done for my family. There is a passion that exists in true love. Not simply true love defined as that between couples but within a family, and that could even be taken further because family means so many different things to different people. This passion is indescribable, unbelievable, and amazing. It's a love that is honest and fearless; understanding and whole; nonjudgemental and all encompassing. I think of it like this...I remember the day Beckett was born and when I first looked at him, held him in my arms, and looked into his beautiful blue eyes I thought, "My God, how have i EVER managed to live life without you until now? I've loved you forever and I just met you!". And honestly, I felt that same way about Jason when we first met. I never thought it possible the whole "love at first sight" thing but it does happen. Their is a passion, a chemistry that develops between people who are simply meant to find each other in this chaotic world. I am so lucky to know that kind of love. And my love for Jason has been mirrored with the same kind of love from him. He has made me a better, stronger, more confidant person and I owe him the love I give him every day. I only wish it could be forever.
It says in 1 John 4:18, "Perfect love drives out fear". How awesome is this statement of love?! I believe that there is no relationship that is perfect but love, and the concept of love, is inherently perfect. The love that exists between God and His children, between a husband and wife, parents and their children....that love, when expressed honestly, is simply perfect and it does drive out fear. Who do children run to when they are afraid? Who does a husband dying of cancer lean on in times of need and despair? Who do YOU go to when you are hurting and feel alone? No matter the label of the person or entity you lean on for comfort, it is undeniably the person you know who loves you and can drive out the fear because that is what love does best. It doesn't need to be spoken, only felt. I saw this beautiful adage the other day in relation to marriage and it said, "A 'perfect marriage' is just two imperfect people who refuse to give up one each other.". And AMEN I say to you all...this is the story of Jason and I...two imperfect people that REFUSE to give up on one another. Never have, never will.
God bless! And thank you to everyone that has donated to this site...it is has been helpful beyond words I could ever express on this page.
"Sometimes God lets you hit rock bottom so that you will discover that He is the rock at the bottom"
This quote couldn't be more true and I'm feeling it these days. Jason has gotten increasingly more confused over the last couple of days and the fatigue is markedly worse as well. The feeling of watching this happen and is one I simply can't describe. It's almost something you'd honestly have to live through to understand, and I would wish this on no one. In situations like this you pray so fervently for time and yet time can almost play cruel tricks on your heart. When we hope and pray for time we are hoping and praying for QUALITY time, which in our dreams is reminiscent talks, quiet evenings as a family, and possibly playing games with our son. However, time can show you an immense suffering that takes place within the person dying from cancer. This is where the crutch of time becomes a cross that bears great burden. It's funny how our prayers evolve and change over time as we realize the results of certain answered prayers. I still pray for time but my urgent prayers, the ones where I literally beg God, are all for comfort and days laden without confusion. And those prayers evolve daily....as most prayers do. God promised never to abandon us...ever. During times of sorrow and strife we need to remember that God is carrying us through the burdens and is there with us through it all. I struggle with this sometimes and then I'm reminded of the blessings God has blessed Jason and I with. Blessings such as our little boy, time together since his diagnosis, and all of the wonderful people we've met along this path. You see, sometimes we become so disheartened by the journey, we forget to revel in the miracles we encounter along the way. They are there, we just need to look harder. I know I need to!
Jason is still my best friend and the person I love completely and without reserve. Caring for him as his wife and his nurse is difficult beyond words. Yes I'm a nurse by occupation but it's different when you're doing these things to someone you love so deeply. The context of the "game" changes a bit. The medication giving, the dressing changes, the bathing, the emotional reassurances, the tending to for little things...everything tears me apart inside. But I have to do it because no one else can. The hospice nurse brought up Hospice House again today and I entertained the idea only if Jason became so confused that keeping him home posed a threat to his safety. I want him home and he wants to be home, as would most people in this situation. I took vows when I married Jason that truly meant something to me and those vows said "In sickness and in health, til death do us part". I promised, he promised. And lets just say...I'm not one to make empty promises.
God bless you all this holiday season and while I feel this next year poses some amazingly difficult challenges....I remain hopeful. We have to be...there is nothing to be found in despair or hopelessness other than ruin. After all...when we hit the bottom we need only to look up to begin to see the light again. I need to remember to keep looking up!
Well, the ostomy has stopped working yet again. Jason has become very weak over the last week and has hardly had any energy. This just takes it out of him and it seems like every time he becomes obstructed it's gets a little worse for him. More fatigue, more discomfort, more weakness. I literally hate it. I can't stand watching someone that I love so dearly suffer. If someone could feel their soul breaking, that's what it would feel like. I'm convinced of it at this point. I'm praying that the ostomy will work again soon and that we will get more time. That's what I pray for...always more time.
I think what is bothering me the most lately is how this has affected my son and his relationship with Jason. When I think of father-son relationships I think of baseball outings and being chased around the yard. I think of rough housing and learning about tools and how to "put stuff together". Unfortunately, Beckett was only 1 when Jason was diagnosed and has only known Jason to be sick. Jason has never had to the opportunity to be a 'full-on' dad, no matter how much he has wanted to. And now that Beckett is getting older and wanting to play more organized games he notices that his dad can't participate. He handles it very well and I'm proud of how sensitive my child is to the suffering he sees in this world. But my heart breaks for him too. I know the feeling of being a child with absentee parents and I never envisioned that for my child. In fact, I did everything in my power to prevent it. However, another plan is at work here. Beckett has seen suffering and has watched Jason go through procedure, has watched dressings be changed, and medicine given. It has shown him empathy and I am thankful for that. I think a lot of people in this world lack empathy for others and it shows. Teaching children about walking in someone else's shoes is important to develop character and a decency towards humanity. Beckett is a sensitive child and it is one of the most beautiful things about him. Jason bears the same quality and I see so much of Jason in Beckett. Compassion, love, sensitivity, and attitude! Beckett is God's miracle...plain and simple. Jason and Beckett both share an amazing wonder of the world and it is a quality that more people need.
My hope for myself and for those that read this post is this...don't lose the wonderment of the world and the smallest things in it. Appreciate every thing, every moment, every person you meet. Be open to lessons hard situations present. And as always, love each other with a passion that others can't help but notice.
I hope every one has a Happy Hoiidays and a very Merry Christmas! God bless!
Hello everyone! I wanted to extend a small update on Jason. The ostomy is working (for now) and Jason's procedure the other day went well and both nephrostomy tubes are in working order. However, we are still battling pain and discomfort daily. It is so hard to get him comfortable sometimes and that is extremely frustrating for the wife and nurse in me! I hate seeing him suffer and feeling defenseless against this dumb cancer! I pray to God every night for better days and for pain free days...they do come but are far and few between.
I actually ventured out of my house today, which is a rarity for me, and was captivated by the normalcy in which people walk around. It feels strange for me to be out of the house, it almost makes me feel guilty. I see other people walking around with their families and doing their Christmas shopping and I can't help but feel a slight pang of sadness. Sadness for an extreme "missing" of the normal everyday things people take for granted. Heck, even seeing someone wear normal clothes and makeup! Since we have very few outings we rock the no-makeup and sweats look well in my house! Not that there is anything wrong with that but it would be so nice to get dressed up and go on a nice date with Jason! We haven't been able to do that in so long. I miss that more than I can even explain. Jason rarely feels good enough to take a drive let alone go to dinner or elsewhere. I never thought I would crave normal so badly..just a chance to go back to the way things were. We have a new normal now and it is very complicated and stressful. Days consist of juggling a three year old's daily needs along with Jason's, which are complex. Medications, dressing changes, baths, and interplay between myself and nurses/doctors to get everything Jason needs at home. Sometimes I get sick of the UPS guy because all he ever brings is medical supplies! It becomes a depressing mantra...leave the TPN at the door, knock for the boxes of suction equipment, and ring the bell for medications. Almost every day this happens. However, I wouldn't trade it for anything "more normal". I love Jason with everything I have and everything I can give...every minute of every single day. There is nothing I wouldn't do for him and I will take care of him as long as I possibly can. He is my best friend and still, even through all this, can make me feel loved (even if he is bossy with me sometimes). So, here's to praying for more "normal"!
Thank you to everyone who has donated to this site. It is truly the only way I've been able to stay home to care for Jason. God bless!
Thanksgiving...Christmas....the holidays. Magical times of the year when people are reminded to reflect on what and who they are thankful for. However, as I watch this holiday season unfold I am forced to ask myself, "Why do we wait until the holidays to express a thankfulness we should show every day?". I've said it in previous posts and feel obligated to reiterate...be thankful everyday in every way! Be thankful for your family and friends. Be thankful for your successes both personally and professionally, but don't forget what matters most between the two. Be thankful for the opportunity to laugh and learn to laugh at yourself. Be thankful for your strife for it can bring about great change in the lives of not only yourself but others as well. Don't miss opportunities to be thankful and to tell others how thankful you are for them...
I was asked the other day why my family isn't decorating for Christmas this year. Why no tree? No stockings? No presents? Don't you want to spend your last Christmas together with all sorts of decorations put up? My answer was quite simply...no. It's not that we have hardened our hearts to the spirit of Christmas because that is most definitely not the case. In fact, it is quite the opposite. I thought about the conversation some and felt the best answer to this question is quoted in a beloved children's book. It goes something like this...
" And the Grinch, with his grinch-feet ice-cold in the snow,
Stood puzzling and puzzling: "How could it be so?
"It came without ribbons! It came without tags!
"It came without packages, boxes, or bags!"
And he puzzled three hours, till his puzzler was sore.
Then the Grinch throught of something he hadn't before!
"Maybe Christmas," he thought, "doesn't come from a store.
"Maybe Christmas...perhaps...means a little bit more!"
- Dr. Seuss in 'How the Grinch Stole Christmas'
I thought of this passage from a book I read to my son and thought the message was perfectly stated. Christmas doesn't come from a store and it doesn't come from the decorations that adorn your household. While those things are good and are a celebration of the magic associated with Christmas, they are quite simply 'things'. Don't get me wrong...I love Christmas trees and decorating our mantle with the stockings as much the next person. But this year those things deter away from the time we want to spend together. Same goes for the presents. I was also asked, "What do you want this Christmas?", and my answer? Well, what I want is an intangible. Something that most defnitely cannot be bought in a store. I want time. Time as a family to enjoy just that...being a family. That is, afterall, what Christmas, Thanksgiving, and the holidays are all about. Being together and reveling in the beauty and majesty of those we love. Love is such a precious gift to share with someone and to give to someone. It is the one thing that can be given without money and felt for eternity. It is the message that Jesus himself preached to the world...love one another. I still haven't given up on miracles either...I know they happen and I pray for one everyday. Jesus promised us that our prayers are not only heard, but answered. And since I'm in a quoting mood...I quote from Scripture Jesus' response to his disciples when they questioned him about the withering fig tree.
"Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea' and it will be done. If you believe, you will receive whatever you ask for in prayer."
I pray. I pray every day and all the time. I pray for strength, courage, and the ability to be compassionate to my husband during this time. And I pray at the end of each day for a miracle. But I also say 'thank you' too. For the day, the journey, my family, and for love. God bless and I hope you all have a great Thanksgiving among family and friends.
As we get closer to the holidays I feel like it's only natural to reflect on things we are thankful for. Most people are thankful for family and friends and are gearing up for Thanksgiving and Christmas. Some people even hope for that end of the year bonus and think about what they will do with it. Lights begin to be strung, decorations pulled out of storage, and turkeys are placed in deep freezers for those lucky enough to have them. However, for some the holidays ring a much different tune. The lights are not quite as bright, the turkey is a hassle, and the Christmas carols just bring the wrong kind of tears to your eyes. The hope that rings true in most carols has lost the glimmer of faint heartedness and has taken on a much more real meaning. It's when 'when Christmas comes' or 'what will we get the little one for Christmas this year', is replaced by 'will you be here for Christmas?' and 'how will I get through the holidays from here on out without you?'...that just changes the joy of the holidays. It just does. And while I'm not painting a dreary picture of what the holidays sound like to me, I'm being honest about the feelings in my household these days. It's hard to be excited about the details we relate to the holidays when someone you love is dying. You think about things a bit differently and focus energies on what matters most. Time. Time together.
We will not be having a big Thanksgiving feast or traveling anywhere for the holidays this year. Jason can not eat anything solid again and his colostomy has stopped working (again). We don't know if he will make it through these holidays. Only God knows that. What we do know is that the holidays aren't about the 'things' involved, it's about being with the ones you love. And the ones I love most live right under my roof. I may not get 40 more Christmas's with Jason, no matter how deeply I want them, but I may get this one, and that's what I'm praying for today. One last Christmas as a family...one last holiday together. I hope for many, many more but I am praying specifically for this one.
Jason and I talked about loss and impact today. What it would mean for this household to lose Jason. And the brass bones of it would be that it would literally shake this house at it's foundation. It would affect every routine, every minute of every single day. When you're young and have young children life is different. You are in the beginning phases of starting your life as a family. You have careers, dreams, hopes, and children to raise. You are at the bottom of the mountain climibing your way up, not yet at the precipice. And then something like this happens and that mountain starts to tremble and shake. Everything you hoped for, prayed for, and dreamed of is halted. Your dreams change and instead of wishing for a promotion you pray for a second chance. A second chance at living. A chance to be healthy and vibrant again. What Jason wouldn't give to be able to chase Beckett in the backyard or teach him how to throw a baseball?! The little things that are so monumental in our lives and the lives of our children are the things we want the most. When your health is stripped away there is nothing you wouldn't sacrifice to have it back. And we all take our health for granted too often. Just think of what a day in your household would be like if one parent were deathly ill? Or, for those whos children are grown, what life would be like if your spouse was dying? Who would you talk to in times of lonliness, sadness, or despair? How and what do you tell your children? These are things Jason and I deal with every day. It is the worst sort of reality check there is. Every day is a battle for us, both individually and as a family. I pray every day for peace for Jason and I still believe miracles can happen. I just pray God has one left for us....
Thank you to everyone that has donated to the youcaring site and/or via other means. You are the ONLY reason I have been able to use my fmla to take care of Jason at home 24/7. Due to this arduous journey we've been for over a year, I've long since lost my paid time off. Not to mention losing my mom just before that. So, for this enormous blessing to my family I thank you from the bottom of my heart! And it is the most sincere gratitude I can possibly give.
To end this long update I leave this wish to you all. My holiday wish to you is that you remember what matters most in life and that while your looking at holiday lights with your loved ones, remember to turn away from the beauty of the lights and gaze at your beautiful families. Don't count your presents under the tree, count your blessings as they lie in their beds. Stop looking inward and look outward. Make a New Year's resolution that is of the soul and not physical. Tell each other how much you love one another...every day is not enough. Hug each other tight and often! Listen to each other's stories and laugh as much as you can...while you can. God bless you all!
There are no words to express the sadness I feel as I watch Jason physically wither away from me. He has lost so much weight and has struggled through the hurdles each day brings. But he is a fighter and he refuses to give up easily. His struggles are things we so often take for granted...eating food, drinking water, and even going to the bathroom are challenges for him these days. He has tubes coming from practically every body part and has moments where I'm sure it would be easier to just give up. But he never does. He has never thrown in the towel and said, "Ok, I'm done with this.". Instead he has smiled at his company, tried to spend time with his family on good days, and gets through each day minute by minute. That's what we are all trying to do. Just take it minute by minute.
Maybe it's not too late to pray for miracles. In fact, if you would have seen Jason a week ago you would believe in miracles that he's still here today. So, keep praying for the miracle we all so desperately wish would be granted and pray for more good days than bad. Pray for peace for all of us. And always, always remember to keep your family as close to your heart as you can. Life is so precious and it is cut short all too often. Remember to laugh more, love more fiercely, and fight less. Hold your children tight and never say no when they ask you to play. The days of our lives that we wish would just "hurry up and be over" are precious too...just stop, breathe, and notice the good in every day you're blessed with.
As always, thank you to everyone that has prayed, donated, or sent well wishes our way. We appreciate every single one of you! God bless!
Hello everyone! Jason and I want to extend a huge thank you to everyone and anyone that helped get Jason home. Especially Congressman Cleaver for his act of kindness in helping...I will never be able to repay your kindness or thank you enough for your listening ear during a time of desperation. You are an angel and may God bless you!
Jason made it home late Sunday night and was greeted (rather excitedly) but our son Beckett. I have never seen a little boy more excited to see his daddy! His little eyes lit up when he saw Jason and he has been "helping" me take care of Jason everyday. While it breaks my heart that my sweet little boy will grow up without his amazing father, I am so glad that he has gotten this chance to spend some time with him too.
Jason has been hanging in there but has gotten very weak here in the last week. Things have progressed rather quickly and his doctor agreed that starting some TPN (IV nutrition) may buy us a little more time with our sweetheart Jason. So, right now Jason is in the hospital to receive a PEG tube and be started on IV nutrtion. It is my hope, and Jason's, to have him back home by Friday for Beckett's 3rd birthday. I know Jason will hold on for that...he is, afterall, just that kind of dad!
Keep praying for Jason. Keep praying for Beckett. And selfishly, please pray for me. I can't even imagine life without Jason and the more I try, the more my heart breaks. Jason is the best friend I've ever had and I believe he is truly my soulmate. There will never be anyone that will replace him in my heart. He is absolutely irreplaceable. We have spent every waking moment together for the last seven years and I know that life after this will be unbearable for a long while. So, with that said...love your family, hold each other, hug each other. Wait to take those "business calls" and play with your kids, don't play on your phone at dinner and talk with your spouse about each others day. Jason and I did these things and I'm so thankful we did. Take each moment and enjoy your time together. Love fiercely in all you do.
So as many of you know from Facebook, we got some terribly disheartening news today. Jason's bowel obstruction is too high and his cancer has advanced past the point of treatment. They recommended that the best option at this point would be to go home on Hospice and make Jason as comfortable as possible. Jason will need a PEG tube once we get back to Kansas City, IF we ever get back at this point, for decompression of his stomach. We are trying to arrange an air ambulance to take him home but the insurance is pending and I'm not sure if the hospital will voluntarily kep him for 72 hours until we can get approval. Otherwise the cost is 13000! Kind of unbelievable if you ask me. So I will be talking with doctors/social workers/nurses trying to work all this out so that Jas can go home.
As we are horribly disappointed by the news we are just going to try and enjoy what time we have left together as a family. Once we get home and Hospice care is setup I will determine what we can do about visiting. My house is obviously rather small and with the extra medical equipment around we won't be able to "house" a lot of people. Especially because Jason needs rest and Beckett does too so we will have to play it all by ear. We appreciate all the prayers, love, and support everyone has shown since this all began. Jason has fought so hard for so long and has done an amazing job! This is not his failure, this is just the way it is. He feels disappointed and saddened by the news. He doesn't want to talk about it so please don't ask him about it. Support is good, but if you have questions please relay them to me (Beth) and I will bear that burden.
And don't forget...God did not do this. God is NOT to blame. God has given us more time than anyone ever thought possible with his extensive cancer. God has granted us many good days and a little boy that only one year later we would never have been able to have. We have seen the blessings and that is important to remember now. Jason and I talked about this this morning. For whatever reason, one that I will NEVER understand in this lifetime, God has another adventure in store for Jason. And Jason is a pretty adventurous kinda' guy...none better actually! He told me that he is not scared of dying, but he is scared to leave people behind because we are the ones that will miss him. In heaven, God's love is so powerful that "missing someone" doesn't happen and the time is different so in a blink of an eye they are with you again. It is not goodbye, merely "see you soon!". Does that make it better? Absolutely not, but it is something we know to be true. It is what has helped us get through. So, hug your families, love each other more and sweat the small stuff less. Life is too short and you never know when you'll be called Home.
Hi everyone! As some of you may know from Facebook we did make it to Maryland. However, we have had a few major setbacks in getting started with the clinical trial. Our first day here Jason needed to be emergently admitted to the hospital due to a small bowel obstruction. After some scans and lab work, they determined that he needed a nasogastric tube to drain his stomach contents because he was not passing them through his colon anymore. Since then he has been running some low grade fevers, which they are checking into with blood cultures etc. The pain management doctors have been following as well and have ordered some pretty strong pain medications to help manage his pain. We are also going to be meeting with the surgeon this afternoon to determine a plan as to how to manage the small bowel obstruction. I'm a little nervous about that conversation.
Many people have asked about the governement shutdown and how it has affected us while we've been here. Well, most of the ancillary departments have either been completely shutdown or people are required to work in 4 hour increments. For example, there was a transporter available to take Jason to cat scan but I had to take him back to his room because they had to leave. Hundreds of cancer patients, adults and children alike, were turned away yesterday after a "cut off" time for all new clinical trials. Nobody can tell me how or why but Jason squeked his way in although until this acute issue is resolved everything is on hold. I blame God for that little "squeak". :) It is an absolute shame and embarassment to this great nation that we live in a country filled with freedoms and luxuries most people elsewhere in the world cannot even fathom where people at the end of their ropes are being turned away. Especially when we said, "Hey! You folks that have nowhere else to turn, come here! We want to help you!"..just to turn around and say to those same people that came from all over the WORLD, "Well, sorry, we don't believe our own people should have health insurance so you gotta' go. Even though the healthcare thing is a law already, too bad.".
Hello all! Sorry the update has taken so long as we have been very busy with coordinating a new "adventure" on this cancer journey. Jason's last PET scan was worse and the cancer has gotten more active and spread. Therefore, we will now be trying a clinical trial in Maryland this coming week. If he is for sure an eligible candidate, we will be flying out there every two weeks for four months and then monthly. We are hoping that this clinical trial will prove to be effective. We have never stopped hoping, never stopped praying, and never stopped believing in a God that has a perfect plan. Even if we don't understand the plan right now.
Thank you to everyone that has prayer for us, contributed to the fund in some way, or just had positive words of encouragement to offer.
Well, school is in session and we are still in the swing with chemo. Same regimen until the scan next month. Hopefully, the scan will show some progress in the right direction for once! That would be so amazing! I pray for that EVERY single day and I can only hope that someday a brilliant scientist finds a cure to end ALL cancer! No one should have to fight this fight...no one EVER! The stress that cancer places on a family is not only burdensome but terrifying. It's hard to live in the moment when you're scared things could change in a heartbeat...although we still try. We continue praying for positive changes in the upcoming scan and we hope you all are too! KU should be submitting information soon to get him in a clinical trial and while it is all the way in Washington D.C. we are still hopeful that he gets accepted for the trial. Jason has been feeling ok...although over time chemo definitely wears an individual out. Fatigue and pain are always a constant battle for Jason and it breaks my heart in a million pieces to watch it happen. It is one of the most helpless feelings in the world.
As a family we are a new adventure...potty training! Holy moly! Seriously, I think Beckett may be in diapers when he's 15 but I remain optimistic! He will pee for EVEYRONE but me! I've always been the lucky one like that! :) Beckett also started his first official year of preschool at Our Lady of Presentation Preschool in Lees Summit and the church has given him a small scholarship to make tuition more affordable for us considering the circumstances. That has truly been a blessing because faith can always help get you through and that is our hope for our son's education in a Catholic institution...to know that God has a bigger and better plan for all of us. Whether we understand it or not, that's another story! :) Mommy is back in school again too! Still trying to get my Masters degree to be an Acute Care Nurse Practitioner...can we juggle much more?!? Jason's biggest and most important job is trying to get better...one step at a time!
Thank you to everyone for all the prayers and well wishes! To everyone who has donated, prayed, or added my family to a prayer list...I thank you from the deepest part of my heart! It means the world to me to have your support and I know Jason feels the same.
Hey everyone! Sorry it has been so long since the last update...life is crazy busy as you might imagine! Beckett is starting his first official day of preschool on Monday and he's excited about that! Thankfully he has a few kids from his summer class in his regular classroom so he will have some familiarity there. It has been really neat watching him grow up and progress even through his short summer session of preschool...his words, comprehension, and conversational skills are truly amazing! We pray that Jason gets to see Beckett continue through several more years of school!
Jason is still on chemotherapy at KU and we will get another PET scan here in about a month to see if there has been any progress made. At the end of August they will also submit him for a clinical trial that is taking place in Washington D.C....we hope he gets accepted. It stinks that it's so far away but we are willing to try anything for more time together and HOPEFULLY a total cure! His spirits are good and he remains positive but I know it wears on him (as it would anyone). We are trying some alternative, homeopathic methods as well to help control pain so hopefully we will make some headway there.
We are so thankful to everyone for all the prayers, positive thoughts, and contributions to Team Bertschy! It has helped alleviate some of the stress associated with this ongoing, terrifying battle. The prayers can be felt from all angles...keep em comin!
Love and God bless!
Jason comes home tomorrow! Yeah...Beckett and I are SO excited to see him! It reminds me of when he was always off with baseball and how much I would miss him while he was away. I've always admired him for giving up that dream to make our own dreams together as a family. He is definitely the most selfess person I know...plus, he just happens to be an amazing friend, husband, and father! Can't wait to hear about his adventures and if this has given him some more hope.
Thank you to everyone for your continued support! You have all been so kind and amazing! I pray every single day and I will forever! Even though it is not always easy...I try to give everything to God and hope He can lead me in figuring it out.
Today is a day we can focus on goals and overcoming huge obstacles! Months ago Jason applied for an "adventure" with First Descents, a sponsored organization that provides an outdoor adventure to young cancer patients in active treatment. Jason was chosen from a list of applicants and was blessed with an opportunity to travel to Moab, Utah and do a rock climbing experience with fellow cancer patients experiencing many of the same obstacles. Jason is on his cancer trip in Moab, Utah, right now and has faced some challenging obstacles. From getting on the plane (long story...but after missing 2 flights he got there if that says anything) to overcoming his feelings of defeat while learning how to rock climb with an ostomy and some pretty intense neuropathy...he has had some challenges. But he called me today and was happy. He struggled the first time up but was able to get it done on round two! He feels the difference in his abilities and I know that's hard for him, but he did it! He overcame the fear, the uncertainty, and the pain of doing what others may think of as insignificant. Plus, he is with young individuals that are also fighting the good fight and battling this devil we know as cancer. I'm so proud of him and all he has accomplished while fighting this nastiness! He is a strong person and has an amazing will to live. That alone blows my mind daily! I'm asking that everyone continue to pray for not only Jason, but for others that are in the same place and fighting the same battle.
Thank you to everyone who has donated time, support, and/or prayers! We are always and forever grateful to you! God bless!
Hello! Sorry it's been so long since I've updated everyone but we've had some pretty busy days here lately! A lot of you know this already and have been involved at some point, but there have been a couple fundraising events set up in Jason's honor. One was an Arkansas Naturals baseball fundraiser which was to take placed this last Thursday. However, due to some confusion on behalf of Mother Nature (umm...snow in May!?), the game was cancelled. Amy Mize Koch, Linda Doeppke, and the Naturals were kind enough to pull off an amazing fundraiser! And even though the game was cancelled, the Naturals executive helping out was kind enough to re-offer the game invite and first pitch throwing to Jason again! We couldn't be more grateful! Although we were bummed the game was cancelled, Jason is excited to get the opportunity again. We are planning for a game sooner rather than later because he is feeling pretty good right now! Thank GOD!
We also have a spaghetti dinner fund raiser/silent auction coming up in June thanks to Linda! She has done an amazing job with this thing and we couldn't be more thrilled with her progress. If anyone is interested in the event, Linda has created a Team Bertschy facebook page with info. We have been absolutely blown away with the kindness, compassion, and support from EVERYONE that has been involved since this terrible nightmare began! It really amazes me how people can really come together in tragedy. We love you all and if I had more time I'd write a heartfelt note to EVERY SINGLE person that has contributed time, thoughts, prayers, whatever to my family! I honestly would. Unfortuntely, that wouldn't even be enough to express our gratitude.
We have to be thankful for the last month because Jason has actually been feeling pretty good. The colostomy, while a hard adjustment at first, has been a life saver for Jason. The horrible pain, pressure, and anxiety in that area of his body is pretty much gone. While the ostomy comes with it's own challenges (the maintenance, changing, and care of it), it's still better than the alternative. We are just hoping, praying, pleading with God that this new chemo cocktail will give us more headway than we've had.
Thank you for the prayers, the thoughts, the love! God bless!
Hi everyone! its Beth...jason has been trying post updates but I think I've caught him fallen asleep doing so more times than not. He gets so tired...God love him! First and foremost we want to thank everyone who has said prayers for Jason because right now, he is feeling pretty good and things are relatively smooth. So PRAISE GOD for that! And since we are living in the moment...we are so thankful for today and for being able to be together RIGHT now. we did find out that jason is going to have to have his nephrostomy tubes put back in to protect his kidneys. He is still making urine, but the chemo is very hard on the kidneys and since that's our only option for treatment right now we need to keep his kidneys as good as possible. So that's planned for next month...poor guy. He's taken it really well although we all wish things could start getting back to normal rather than more of the same.
Anyhow, thank you so unbelievably thankful to everyone who has prayed, donated, and/or put jason on a prayer list. We are doing our best to let God be in control and to do what is best for our family. So thank you so much more than words could ever say and God bless.
Today I'm reminded of the importance of family. Family comes in many forms...nuclear family, extended family, friends that are like family. No matter what form it comes in, family is THE most important thing in life. That sense of being together and loving one another is one that will hold a sinking ship afloat. As my family has battled cancer we have come to appreciate family more than ever. Unfortunately, when faced with the prospect of losing someone, that realization comes more forcefully than necessary. Jason scared me the other day because he said he would be lucky to make it to 45, to 35. It hurts my heart to think of what life would be without my best friend and the father of my only child. And I know it hurts him too. He worries about those he would leave behind. Although we try to not think about those things, it is something as adults and parents we MUST think about. We fight for every day together and we hope for better days. We will NEVER give up, especially not on each other.
Thank you to everyone who has donated to our family and to everyone who has added us to prayer lists. We are thankful and blessed to be surrounded by support. I wish I could send thank you notes to every single person and tell them individually how much I appreciate their support. However, for those of you who know me...you know what bad writers cramp I'd get! j/k (mild humor is good for the soul). So, this forum is as good as any...so WE THANK YOU! God bless always!
Hi! Just had an extra moment and thought I'd post an update for what's going on this week. Jason goes in for a procedure tomorrow morning to have his ureter stents replaced. We've done this about three or four times already so we're seasoned at these procedures. However, it doesn't mean they get any easier! We check in at 6 am and the procedure starts at 8 am. It typically doesn't take very long but they need to watch him in PACU afterwards for a little while so the medications wear off.
Yesterday, Jason wanted to try and get out of the house so we went to the pet store to let Beckett look at the fish. He enjoys looking at the "burdies" and the hamsters...no rodents for us though! Jason did ok but he got pretty worn out and looked kinda' pale by the time we were done. He wants so badly to participate in life and to spend time with Beckett but his fuse of energy is awfully short these days. We pray for good days and days when he may actually have energy to do fun things again. And not just do them, but truly ENJOY them again. Cancer makes me so mad because it takes a lot of pleasure out of things. A person's physical ability to enjoy life and daily activities is diminished simply because their bodies are fighting the ultimate battle and don't have much to spare in the way of energy. That's my daily soap box...done.
Anyways, we are hoping things go well tomorrow. Chemo again on Monday. Thank you to everyone who is praying for our family and has contributed to the fundraiser. We are beyond thankful to everyone and hope that we will have even more triumphant stories to tell in the future!
Hello everyone! I am posting this update for Jason because he's super tired from this week's new chemotherapy. He started the new regimen on Monday and so far, so good. Well, aside from the extreme fatigue, which has always been an issue with chemo for Jas. His new treatment is considered simliar to the Folfox therapy, which is an infusion of chemo that runs for 24 hours/day for three days at home and then he receives an additional two chemo drugs at the infusion center. It has been frustrating for him at times to have so many "contraptions" as he calls them to work with. The colostomy, the pain pump, and the iv tubing get him tangled up...espcially when he's trying to sleep! We make the best of it and I try to joke with him about it to keep his spirits up! Sometimes I'm successful, other times not so much. :) I have contacted MD Anderson Cancer Center to reach out for some answers and am anxiously awaiting their callback.
Again, thank you so much to everyone who has donated to our family and for anyone who has shared a positive thought or prayer for Jason! We are beyond thankful and humbled by everyone's support! And while I don't always embrace this quote (especially on the bad days), Jason and I always try to remember it!
"A strong sailor was never tested with the calmest waters."
So, these sailors continue treading the treacherous waters of what cancer brings and as us Irish joke say....we're gonna' give em' hell!
Much love and blessings,
A little update on the last couple of weeks. Jason was admitted to the hospital a few weeks ago with excrutiating and intractable pain. After several tests and workups he had surgery to have a permanent pain pump placed in his spine and then two days later another surgery for a bowel resection with colostomy placement. For those of you that do not know medical jargon it basically is resecting a portion of the large intestine and bringing it up outside the body. This dramatically helped with the pressure in his abdomen and the pain that he was experiencing trying to have bowel movements. Although it's difficult to see surgery as a blessing, it was! It really helped his pain level dramatically to have the colostomy. Although he has had some difficulty adjusting to the physical and mental aspects of this dramatic change, we both know it was necessary. After two weeks and two surgeries in the hospital, Jason was finally able to come home! He has had a rough recovery period and is still working on getting better. However, everyday seems to be a little better and we are both adjusting to this new "new normal". Jason's oncologist has consulted with the doctors at MD Anderson Cancer Center to concoct another chemo regimen for him, which starts tomorrow. That is a whole other blessing because the chemo regimen was almost not approved! Yikes! So...tomorrow is another uphill battle but we continue to fight the good fight! Much love and blessings to all!
Hello everyone! It's Beth...this is the first real chance I've had to put a brief update on the website. I just want to say that Jason and I are completely humbled and awed by the amazing show of support. It never ceases to amaze me how people can band together in times of great trials. We will always remain hopeful for full recovery and pray daily that this will someday get better. Every day is a blessing and when you're taking life one day at a time, that is sometimes hard to remember. Especially during the rough days! Although as time has gone on and this has become our "new normal" we cherish the time we're getting together and hope one day it will be time that is spent reminiscing about this "crappy pasttime" and hopefully, helping another family in our current position. I, personally, have learned to look for God in the darkest places through this. And you know...I've always found Him there! I'll share stories related to that soon...God is awesome and although I don't always understand His doings immediately doesn't mean that eventually it doesn't become clear. That being said...I've encouraged Jason to try to post as often as he can about his feelings, recovery, trials, etc so that updates are more current and everyone has active prayer offerings for Jason. As I'm sure you all understand, he has his good and bad days but when he is feeling spunky he'll post too! Much love and blessings to everyone who has even had a positive thought to send our way...we are beyond blessed and intensely appreciate the support!