100 Days

I have struggled to find a way to update this blog about the past 100 days.  As I sit here thinking of all of the twists and turns in the past few months I am amazed by many things.  But how do you convey to those around you, that are your support how grateful you are and amazed that you are still alive and yet can in the same sentence tremble at the current situation and prospects of a life so uncertain. 

I guess the way I have come to is this; there are two stories of this tale.  I cant help but feel so victorious and blessed to be alive.  The past 100 days of transplantyness have given many brutal attempts at beating me.  I had no idea what gvh would feel like, and it has proven to be something, while continually shifting is continually a struggle.  A pulmonary embolism that had every potential to end everything, but didn’t.  Drug induced Diabetes, from all of the medications and daily injections of all sorts of things, has been a new twist.  But I will say the most intense has been this steroid withdrawal.  Somewhere between excessive swelling and the fact that even walking has become a painful thing is a difficult transition.  I have always had a respect for those who have chronic pain but until now did not quite understand what it really meant. 

However then I look back a bit further and realize some things.   The chemo radiation combo I had just before the transplant is the most aggressive prescribed.  When I look at what my body has been through I am amazed and so grateful to still be here.  To still have such love from those around me and to have a life that while I generally feel worse than I ever have, continues to be a great life is amazing to me.

So as I look forward to the next years of rehab and introduction of these new cells, there is both power and trepidation.  I cant believe how strong the body can be and I pray that with time I will again regain some of the strength I once had.  I will say I do tremble as I think of the next stages of further steroid withdrawal and medication changes though.  The acute GVH has transitioned to a chronic GVH and will be treated now and maybe forever.  And for the next long while I will still be immune-suppressed and vulnerable. 

But I guess it comes down to this.  While I have never experienced the intensity that I do now, and it is a more difficult and a more painful climb, it still is the same climb.  As I look back I have seen many paths like this.  200 days in the hospital, chemo, relapse, operations, its all the same struggle.  But I want all those that read this to know of the importance and power that those who stand by in support are.  In the beginning I found I could do more alone, and now find it is through the strength of others that I function.  From small steps daily to the hours spent dealing with a tormented stomach it’s the knowledge that its not just me fighting that keeps me in it. 

                Anyway it had been some time since I have updated, thanks for the love, the prayers and the support.  Below is a link to the Chad Hickey Foundation.  Jared Vawter and other Co Founders are in the process of creating something to not only help me but to come to the aid of other Leukemia Patients in Need.  Please check it out and see the progression.  And as always Have Heart, C is Still For Chad

http://www.chadhickeyfoundation.org/

The Outside-

hello friends-
i hope you can forgive my latency in this post.  Friday will mark just about a month from my hospital release.  it has taken me to about now to get things in order and catch my breath if you will.
I wish even as I write that I could convey the awful fear that I wrestled with about transplant.  With the odds, the guaranteed factors and the bleak outlook given by the actual guidelines of the treatment I could not really go a day without several tearfilled moments of trepidation.  I share this so that I might explain the events of the past 6 weeks and while in so many lights while this could all seem so tragic, or painful, the real beauty is how how I am still here, how I feel and what I have experienced.
I think of these beautiful moments in my life and now have a very powerful grouping of new events that I can add to the list.  I remember walking with a sort of resolute peace into the hospitlal to begin this.  Accompanied by my brother one of my best friends, and the father of one of my heroes I could not have gone into battle with a better escort.  With the prayers and messages from so many the thoughts and love of all of those I know, I could not have been In this predicament with more support and honest caring behind me.
And with all of this support and faith the time i spent in transplant was nothing short of a stream of miracles.  i will say that in the thick of it, mucositus, abdominal pain and the general onslaught of transplant reactions were close to as bad as i had thought they would be.  the biggest reactions were a complete frying of my adrenal glands and a severe case of mucositus (sloughage of the lining of the gi tract).  my sisters stem cells took very quickly and with ferocity.  this is a very postive thing but for the time being has left me with an acute case of Graft vs. Host disease in my stomach.
now you can see all of these things and take it either way.  for myself i emerged after 6 weeks from an ordeal that i have feared for 3 years would not allow me to function again.  that through it i would dimenish in more ways than i could manage.   and yet today just 7 weeks out, i am making progress.  i can feel the love and the miracle it is that i am not only still here, but feeling for at least a few hours a day like me.  the gvh is painful and difficult, the thoughts of the pain in the hospital can be a hard rememberance, but the feeling i get when i can sit with my wife, friends, or just feel the breeze roll through our apt is worth every moment spent to get here.
so the next while-  tuesdays and fridays i spend the day at the hospital clinic.  i get blood draws to check all the levels in my system.  im on about 25 pills a day and some iv magnesium at home and over the next few months the GvH will be the target of treatment.  from that point the immunosuppressants will be tapered and we will see just what the immune system will do in my body.(this is the Chronic GVH stage).  until then anna and i spend our time enjoying what we can.  from art, to building new projects, to visiting with friends, we are blessed to be able to enjoy many things.  at some point we will be able to have more contact, but i am still very immunosuppressed so visitors are welcome (just be healthy).  and when we can, we will spend more time in fresno.
this time has given me so many glipses at life, i cannot express the gratitude that we both have for the abundance of love, and energy spent in our behalf.  to have walked and continuing down this path i had assumed it would be a darker and a more fearful place.  it is nothing less than the hand of god that has kept us from this and i am grateful in every step for it.  thank you again for your love and support-
have heart-
c is still for chad

Ki and Hugs and a game of scrabble!

Jeff and Chad

Erin and I ( ported and ready to go)

Last Day in the Hospital

6 weeks indoors... First Stop- The Ocean

first week out (last month)

Jeff and Anna about to RIDE

A NOTE FROM CHAD

Im grateful that anna would put together al of the things that have been going on for the past few weeks.  While I like to write I have found my thinking is not as clear in the past bit than I like.  It has been an interesting experience to require such huge doses of morphine to simply stop the aching and pause the tears.  The mucositus has been well probably the most acutely painful thing I have ever experienced.  The pain meds have been pretty good at covering but it never ceases to amaze me what those moments, minutes, and hours between the pain increasing and the dose increase orders being written, really can be.  The tongue is in a more manageable place but I can tell my gi track and stomach are in the beginning of a very long path.  Other than that I have spent the past 6 days now asleep around 20 hours a day.  It is a crazy thing to actually ache from the fatigue.  I know with my counts rising I will soon have more consciousness and defiantly look forward to that.

                Each day I try to get a little out of bed time.  yesterday I walked a few laps and did a few steps on the set of therapy stairs they have here.  I have to say the walking even just a lap or two around the floor is much more taxing than normal chadwalking it is much more reminiscent of trail running, or the energy required for a mile run per lap.  Crazy that in just a few weeks what the body struggles with.  On the other hand I am grafting (taking in a new cell system)  I have to say that it does feel like that is more taxing than I had even thought were possible. 

                Its an interesting thing to finally be at the bottom of that trench I kept running next to for so long.  The view is not quite what I expected, its quieter here than i thought it  would be.  Its like that deep silence that comes when you lat at the bottom of a pool.  Its as if you start believing that the outside world is not tangible like this new found place is that of solitude, though its not.  I am grateful that here in this place I have such friends that pray my safe retrieval.  I am eternally grateful that I have a wife that sits here with me with eyes that still shine with the knowledge of what I will be after this, and not swayed by the day to day or the numbers that will be. 

                I guess this is about as good as it could have been to go off of the path of normalcy or of life, and drop into this transplant.  I couldn’t imagine a softer fall, though it has been great and in no way easy.  I am constantly reminded while I am here at the Mercy that is had for me in being able to survive it in this fashion.  I think of the families that have prayed there sons, daughters, brothers and sisters through this great fight.  It is a beautiful thing to feel that energy here, that we are in this fight together, that all of those prayers do not go in vain.   I can feel a great weight that comes from being blessed and allowed to live through this.  I have watched so many suffer greater pains in this battle  and in their goodness find that their path was not to be finished here.  Each day that I find myself suffering I count myself lucky that at least I am still able to fight and that I am just so grateful for all those that continue to choose to fight with me. 

                So for the next few weeks I will work each day to walk so that I can keep my lungs clear and my gi track healthy and moving.  Other than that I will rest and pray with all of you that my body takes well to the new cells that are taking root within me.  Don’t worry if your wondering if things are hard, they are.  If you r wondering if everyday for a moment I will shake with all of my being in this fight, be assured, I will.  But also know this, I am still here, I am still fighting.  This I believe is not my time, and if it were there were plenty of ways I could have been done before.  This is rather a great time to fight, a great time to learn to live again, and wonderful time to count the blessings that are still being poured out.  Please know of my gratitude, thank you for the calls, texts and messages, they still have such power with me.    And as always : Have Heart  C is Still for Chad not Cancer

REACTIONS

It wasn’t too long after the transplant that the effects of everything started to set in. The reactions of fatigue and pain, nausea, and mucositis began to set in. chads insatiable appetite subsided and his ability to eat, disappeared. His mouth began to get sore and then his tongue began to swell, sores formed and the inside of his GI tract was experiencing the same things. The only visible portion we had was the tongue , but the pain ran through and so chad was placed on a morphine pump so he would receive a certain amount each hour, along with the freedom to use a certain amount every ten minutes. This amount was increased each day as the pain increased. He spent most of his time in a transitory state of being in pain, and drugged and tired, but unable because of all the meds he was on, I felt so bad for him. He constantly suctioned saliva from his mouth because of the pain of swallowing, he was placed on iv  food and told to just take as much morphine as he needed to be comfortable. Some days that was possible, but nights that was especially hard because he would wake in pain, so he experienced many sleepless nights , that in the last three days has started to make up. Because his counts were so low he had blood transfusions to increase his hematocrrit levels and platelet transfusions to increase his platelet counts. Anyone that knows anything about chads medical history knows that that means lots of Benadryl to avoid platelet reactions, lots of steroids to do the same things which in turn equals a more drugged chad, but one that can breath. He had a couple of minor reactions, but the nurses did a great job of keeping them under control and watching closely so nothing got out of hand. When he had trouble breathing after they gave his breathing treatments which cleared things up. Because it is hard to get out of bed, chad has been meeting with physical therapy to keep him moving and mobile. He has had a few fevers, but were able to be kept under control. In the last couple of days chads counts have began to come up on their own, everything is increasing which means healing. His mucositis is subsiding, his body is healing, morphine is decreasing and sleep is increasing. In the midst of all the platelets and Benadryl and morphine chad was unable to sleep at all for a good four days or so, so I think his body is experiencing withdrawal from less opiates and has realized that he has just been hit by a few trucks and should probably heal from it. And the great miracle is that it is. He is engrafting, erins cells are reproducing and beginning to heal chads body. It is such a miracle to watch this happen. It is the beginning of a very long road, but we are on the right one. Chad has done great, he is strong, and positive and the thing I love the most is his ability to share happiness with those around him that are going through the same thing. We had many visits this past week from fellow patients that are young adults as well and to see how they impact each others lives is amazing. As sucky as all of this is, it brings people together, makes people throw themselves on their knees, and lets you see aside of people a side you would never see otherwise. It makes you appreciate life, and love moments, it makes you slow down and see the importance of a single touch, the power of a hug, and the huge change simple words can mean.  And for me it makes me realize how un nurturing I am, but is teaching me rather quickly what it really means to love and nurture.  It makes me laugh some days to see how well god knows me and others and He gives us different experiences that teach us how to become more like Him. I will try harder to keep you more posted and up to date…sorry. Chad is sleeping, like he has been for the last 3 days and off IV food, but still not in taking very much a cup of jello or two, so that is the next step, he needs to be able to eat, move, drink, and take pills by mouth before we get out of the hospital, but it is all just the beginning, but we are grateful that it has gone so well.  That is easy for me to say not being the one that has gone through the excruciating pain, and discomfort of all of this, but our gratitude comes from the huge reality of how bad it could have been. We are keeping our fingers crossed that the blessings keep coming and the next year of this continues to go better than it can be. Thanks for your prayers and love, we love you all. Happy Fourth, we slept through it! 

BEGINNINGS OF SKIN SLUFFIGE....IN THE REAR OF THE MOUTH, A SMALL GLIMPSE OF WHAT IS GOING ON IN THE WHOLE GI TRACT.

GOTTA LOVE PAIN MEDS!

MUCOSITIS = IV FOOD FOR AT LEAST A WEEK, STILL ON IT.

TRANSPLANT

Erin came and did amazing, she was able to come up and see us on Sunday and then early Monday morning she had a port placed in her neck where a few hours later they removed her stem cells and then saved till the next day for the transplant. She did amazing, and we were told by the docs that she had robust cells, so we were all quite happy about that. The next day chad was again pre medded with Benadryl and received his transplant. He laid in bed, sleeping while the hung her cells and allowed them to slowly transfuse in. it seemed just like a blood transfusion. To anyone that has ever experience d or seen one , it is pretty anticlimactic, but knowing that this was going to save his life, made the experience different, he slept, I watched and was grateful for the blessings of medicine and people that dedicate their lives to finding treatments, I was and am grateful for all those that sent love and prayers on this day and all others and I was grateful that this experience potentially gave my husband a longer life on earth to spend with me. 

JEFF CAME AND VISITED US, WE LOVE HIM! 

I LOVE HIM!

AFTER ERIN CAME AND DONATED HER MARROW.

CHAD AND ERINS MATCHING PORTS.

NEXT DAY ERIN CAME TO VISIT IN A COOLER...OKAY NOT REALLY JUST HER CELLS. THANKS AGAIN!

THE PRODUCT OF BENADRYL.

DURING THE INFUSION.

ALL THE NURSES CAME IN AND SANG HAPPY BIRTHDAY TO CHAD ON HIS NEW BIRTHDAY, WE LOVE ALL OF THEM!

HAPPY BIRTHDAY CHAD!!! HIS VERY OWN CAKE!

RADIATION

Sorry about the lack of Blog updates in the last most important parts of all of this, I blame that on myself sorry. It seemed like I just kept putting it off and finding other things to fill my time with, journaling and recording what is going on seems to, like always in my life,  seems to be consistently placed on the back burner. So sorry to keep you all in the dark because of it, but we will fill you in. So we checked in on the 14^th of June and started it all. I think in the past blogs we got to Day 2 well a lot has happened since then. Chad had a week of full body radiation that he handled in all witnesses eyes incredibly well. He was nauseas and handled it by eating French fries and mcdoubles. Not like the most of us would do it, but we all know he doesn’t do things like the most of us and that is why we love him so much. So I made countless run to McDonalds, met some friends there each time, in fact one day met a couple from Germany and was able to practice a bit while we waited in line for 15 minutes, brought me some joy. Here are some pics of the radiation. It was morning and evenings for a week. Then after that was all over, chad received an incredibly large dose of chemotherapy, that is meant to be the next big gun they bring out to zap this thing. That again he handled amazing, he was drugged most of the day on Benadryl and when he was awake he ate mac and cheese and chili to curb the nausea. The nurse couldn’t believe it and just looked on in worry and disgust, I think mostly because she would rather pick up regurgitated crackers than mac and cheese and chili, but he kept it down and all onlookers were again in amazement at his ability to handle such a task. The dose lasted four hours and the nurse was in about every 15 minutes to check his vitals for possible problems, but he did great. He then had two days where he got to rest if you can even call it that, it was two days where they didn’t do anything else to his body. 

YUM MC DONALDS!!! CAN GET YOU THROUGH ANYTHING!

LOVE CAN GET YOU THROUGH ANYTHING!

ARM BAND....CAN THEY GET HIM THROUGH THIS?

YES!!, USED TO HOLD LEAD PLATES IN PLACE TO BLOCK CHADS LUNGS.

HARNESS USED TO HOLD CHAD IF HE FALLS OR PASSES OUT DURING RADIATION.

STANDS HERE MORNING AND NIGHT FOR 5 DAYS 20 MINUTES EACH TIME....

WHILE THIS RADIATION GUN IS USED TO ADMINISTER THE RADIATION.

Let It Begin

I thought today it appropriate to give some words of what has been going on and try and relate to you my gratitude for the steadfastness of a no less than remarkable team.

                A little over two months ago the words came “relapse, 50 percent count, transplant”, and so on and so forth.  As I think about the days that unfolded after those first few phone calls there are obviously moments where it would be impossible to not remember the attached feelings of sobriety, dread, initial fear and as to the meaning of the timing of all things. 

                However these are not the feelings that I find myself talking with Anna about, sharing with the nurses or docs or with you, because while they were a part of the process they were not and are not the defining moments of my path.  Rather I have thought about the way in which each of you have held me through this.  That as I have come to you with my experience, you in return give back to me beauty.  From words, prayers, stem cells, or just physically holding me while I have shaken in pain,  you have been there in any way that you could to support.  I cannot say there has ever been a time when I have ever felt such love from so many and I have to say in it I can only sit here today and give thanks to an all loving God who knew and knows what it is exactly that I and each of us need. 

So what will happen next.

                The past eight weeks have been riddled with days and weeks of chemo, reactions, and planning.  Since April I have been on a path of remission preparation, and finding a match.  I have to say for as grueling  as chemo can be this trip has been really just better travelled.  Better company, much better life circumstances, a stronger team and a more confident patient.  Remission was reached by may, my sister has been found to be a perfect match and all of the spinal fluid has been clear.  All of the prep, the work and the foundation has been set, and We are here. 

                                 This week has been the final destruction of my bone marrow via 13 doses of full body irradiation.  This is the first of 3 methods to create a successful transplant.  In just a few minutes I will begin my premeds for the largest dose of chemo given at one time.  it is the dose that generally takes a couple of weeks to fully administer but it will be given in a 4hr shot to make the greatest impact on my system.  By Monday I will not have an immune system, the marrow to recreate one properly, and then we will head into transplant on Tuesday.  The process on Tuesday is another transfusion and I fear the hardest is on my sister Erin, who will have to have a port placed and various other injections to boost her cells.  While she will be the first to tell you this is not the biggest deal or that of course she would do it, I pray she knows that in being my chance for a survival, I am more grateful than she will ever know.

                So once all three steps have been performed, it is as they say where the odyssey begins.  Every case, and patient are different but for all a year commitment for rehab is the minimum time frame needed.  I could sit here and tell you of all the reactions, other diseases, and possibilities of what may come but it would only I fear dishearten.  What I have figured out is this.  For the past few years my body has not been able to do this whole survival thing on its own.  While for the next season my body will be under the greatest attack of all, I have the chance to not just continue living but to live with more hope more love and more knowledge than ever before. 

                And so we are here.  I am sure I have riddled this blog with so many prefaces, and explanations but now is the time.  I thank each of you again for your consistency, I pray to continue to have it as my companion.  I thank God for the miracle of marriage, for the Love He has for me and the life He has given me to fight for.  I pray for Anna, am renewed by her love, and am so grateful for her choice to be share in this with me.  And to all of you that carry me, I pray that you are able to find the peace that I have.  I pray in even in this I may remain as steadfast as the loyal here.  

Thank you for everything, and as always: Have Heart, C is Still for Chad Not Cancer!

-C

    

PRETREATMENT

Pretreatment
Starting in the next few days I will have “profound fatigue” from radiation which will leave me in bed fighting for the energy to move. Quickly following will be the day of chemo, one of my last ones I pray. It is enough that it requies several large doses of fluids and both 100 mg iv of benedryl and a few doses of hydrocortozone, just to keep my body from the many side effects. Then two days later I will have the transplant which should be the easiest procedure of all a wonderful transfusion from Erins healthy bone marrow. From there I will enter a few week period that will be undoubtedly the most difficult my body will ever experience. The pretreatment of that particular chemo dose (around 1 week or 2 in one session) and the radiation it creates a regimen that will be the most aggressive thing I will ever go through. For a couple of weeks will most likely find myself on IV food as well as a morphine or higher, drug pump. The cell death and sloughing of all GI and Mouth cells along with the other side effects will leave me in a very vulnerable place to say the least. After a few more weeks of dealing with the major organ meshing issues with all of the treatment I will be sent home to be on house arrest and in critical care under the 24 hour care of a nurse and team that I will check in a couple to several days a week. This will last for a year or more. The severity of reactions depends on the Graft Vs Host GVH, the radiation related issues, and the response to that much chemo. The odds and numbers have all been discussed and while we all wish for a golden cure at this point I am grateful that though the survival is a steep climb with not much Intel for ease or success, I have gratitude in my heart for the faith I have and the faith of a loving support system. I am also grateful that instead of another guaranteed expiration date without treatment, I am headed for the possibility of some good years, managing whatever may come. It has also given me just that much more understanding of a purity in love. While Anna has always known the odds, and the fight that could be, taking on this battle with me is really one of the greatest signs of love I have ever experienced. I am so grateful for and to her for her diligence and courage. And to all of you who are here for the fight I give you my gratitude and love. There is nothing easy about the path we are continuing. The fact that you are here even reading is a sign of not only my reasons for fighting but a sign that Love exists and is powerful. Thank you always, please pray with me in this next bit as it surely will be the most dangerous time of my life. And always have heart C is still for Chad, - love

DAY 2

Day 2 (6.15.2010)
So I thought I would give anna a break on day 2 from writing but am so grateful for her really great ability to share our life and love. Um so day 2 consisted of two doses of full body total body irradiation (TBI). So a little more about this process, if you were wondering, its pretty intense I have to say but it has a great team that manages the floor and are great about helping in all they can. So the idea with TBI is to destroy ALL of the bone marrow in my body. For this there is a procedure of standing in a metal cage like apparatus. It has all these hooks and chains like a torture chamber but is less sketchy when they wheel out the tv and ipod player. Anyway so I stand in my skivvies and put on a chest harness which allows lead blocks in the shape of the top half of my lungs to hang on my front in back. They then turn on the machine and from across the room I have a diamond shape of radiation shot through me. The dose they are giving of TBI is the most radiation given in any treatment of anything and is a very small percentage of the radiation done here, around 1percent. So far the reactions have been uncontrolled nausea which as of today has been a wee bit more manageable and I even put down a fair amount of Mcdonalds! ( I know sounds gross but if you haven’t had food or water in 2 plus days, youd be stoked too)! During the doses you stand in the cage and don’t feel any pain but at different times will be overcome with nausea and or complete fatigue which means you can fall etc. something about standing for 40 minutes in front of a machine which will do enough damage to cause literally months in bed and be a part of a 30 year shaving of life expectancy seems to really take effect.
But I have to say with all of this I have really been so happy. I mean I know what is coming next week, the largest dose of chemo ever, and a transplant will with this become the most treacherous thing I will ever encounter, but I feel so blessed I spend less time scared than I do smiling at my wife and wonderful health care team. Granted the nausea and ups and downs can take it out of me but I have found beautiful moments of clarity between the dry heaves and find such joy in knowing that I have such a loving and nurturning wife by my side. Interestingly enough when I took my ring off for the first dose, I did not get the soap all the way off in a section around my finger. Well turns out really anything on your skin does react, so I have a permanent skin spot I guess which feels like my ring is always on, its nice in some ways because I cant wear it, but have to remember to scrub EVERYTHING!
Also I wanted to express my thanks for all of the outpouring of support for the wedding, the move, stem cells, the cancer fight, and just the love shared daily. I have said it so much before but will reiterate the truth in the fact that the love IS what this about and the thoughts, messages and visits do make the days where anything sounds like a better option just that more do able. Thank you always and know of my hearts deepest gratitude, and also of that of my lovely Annas’ gratitude for the wonderful support even though so many do not even know her well. I pray we may be as graceful-

DAY 1

Day 1  (6.14.2010)

Well today we checked into the hospital for the beginning of this new adventure. We awoke early and exhausted from a packed last weekend in Fresno which was a great escape from san fran and everything there. We hung out with our friends, got some things in order and had our last little trip before all of this begins. We swam, I learned to ride a dirt bike (something I have never done) and I think I have found a new found love…don’t tell my parents.  We just played and spent time with good people, went to church and were able to give a little thanks for the incredible things everyone has been doing for us that no verbal thanks can ever do justice for. Thanks to you all again and to everyone that is praying, thinking, supporting, just being there. Thank you! we drove back on Sunday night and talked a lot about what would be happening the next day. We both slept well and arose early, packed and headed to clinic for an appointment. They wanted to make sure everything was good to go and well it was. Chad was full of energy like he usually is, we met  an amazing woman that is post transplant, she was beaming with life, head covered in a hat and dark skin in many places she was one of the most beautiful woman I have ever seen. She talked to us about the beauty of going through this and the strength she and her husband have found in it. Yet another angel sent from god. We talked and laughed and she spoke of how she was inspired by chads positive attitude, she had seen him in the hospital right after his relapse while she was inpatient after transplant. She reassured me like I already know that I married a great man. We finished that appointment and headed to admission, gotta love paper work and overfilled waiting areas, then we headed to radiation where chad was tattooed with purple sharpie marker, unfortanely not the real one he would have liked to get, but he now has his lungs outlined on his chest. It looks like you could play operation. Chad can describe what that experience was like, I was sitting in the waiting room reading the little prince in german and watching all the people come in and out that for one reason or another are being radiated in there brain, throat, or leg. After that, chad was well still bouncing off the walls with more excitement and energy than any other person. It was funny the radiologist came to get me from the waiting room and said, are you mrs. Hickey. With a huge smile. I said yes and she said I hope you know your husband is a sweetheart. She was all smiles and looked like she had just had the funnest time ever. She laughed as she walked away and turned around and continued to complement chad on how happy and positive he was. It made me smile. After radiation we went and checked into our room. That sounds like we checked into some sweet, well it has a bed, mini fridge, shower, toilet and foldout chair bed. Sound pretty suitish to me and it has a great view of san fran so you cant complain too much. i ran down to get bags and when I came up couldn’t find chad until I heard him and a group of nurses laughing hysterically in the hall way. We laughed and caught up with all of them from all of our lives the last few weeks. Then we went to get his port in (a surgically placed iv in the right side of his chest that can be left in for months at a time. ) works great for transplant so you don’t have to be stuck so many times which chad is looking forward too. HE HATES NEEDLES! So he went in, I tried to write to catch up on the past month or so, so you all can be filled in, it will be done shortly.  You know marriage, engagement, pre treatment, past hospital visits, ambulance rides on our honeymoon…lots of fun stuff. It is all to come. But anyway chad went in, full of energy and came out high as a kite with a 3 pronged port sticking out of his chest. He was high for a bit until he hit his bed and was out for hours, when he awoke he was nauseous and in pain from his port, and headaches from the pain meds. He tried to eat which he was looking forward too since well seven oclock am when he had to stop eating but found soon after that it didn’t want to stay in his stomach. Gotta love cancer and everything that comes along. Day 1 and throwing up already. Poor guy. So pumped with zofran and Tylenol chad is sleeping again, he is a trooper. I love him so much. 

31 BLOCKS DOWN

So we finally found a place to live. So I never realized how much I appreciated being able to move home to my parents house between semesters or how much I loved the simplicy of student housing at BYU. I was woken up quite quickly to reality and my gratitude of the fact that on a mission there was always an apartment waiting to be moved into. Well I was hit quite hard in the face as my craiglist master husband and I searched and searched the city of san fransisco trying to find a place to live. Apparently two unemployed people that haven’t had a job in a few years don’t look too hot on paper. We prayed and prayed about it, called on everything we could find, visited open houses with floods of people waiting at the door. It was quite the situation but like God always does he sent us an angel to make everything okay. Chad had posted a link on craiglist stating that we were looking for a place to live and after we were both ready to live in a van down by the river we received an email from a woman that told us we could come and look at what she had to offer. Chad was in the hospital and so I headed over alone to take a look at the place. The woman answered the door and showed me around, told me about the place she was renting out for the exact amount we were looking for, showed me a beautiful part of her house,

She asked me to tell her about me and as I told her what was going on and about transplant and chad and about me and him and everything, I felt like I just poured out my heart, she told me about her, about her close friends that she had helped care for as they went through chemo  and her dear friend that is awaiting a transplant and her good friend that is a transplant survivor. I told her I need to talk it over with chad, but that I would call her that night. As I left she hugged me, gave me her phone number, with a promise attached that if I needed anything I could call her and that in the meantime I was more than welcome to spend the night so I didn’t have to sleep in the hospital. I left in pure awe at the hand of the Lord I am so grateful for. Chad and I had had many conversations prior about how we were just waiting for the right thing to come and well just like the Lord always does, it came, like it always does after more waiting and working than any of us like to do, but he kept his promise and he made it work and not only that, he didn’t just give us a cardboard box but a home  with an amazing landlord, furnished, beautiful view, everything we needed. God sent us another  angel, this time she was thirty three blocks down.

(video posted in videos..enjoy...oh yeah i got my hair cut too...oops)

MARRIAGE IS WHAT BRINGS US TOGETHER TODAY

The day the dream came true. Yes to any of you that are still wondering if chad ever stopped throwing up or ever was able to get out of the hospital, he did. In fact he got out in time for us to get our marriage liscence the day before, not even the morning of. He got released on Thursday and drove to fresno and got to the county clerks office at 4:15. We thought they closed at 4:30 but apparently they finish at 4:00, after a few nice words, a very concerned look of a bride to be and a guy that should have still probably been in a hospital bed. We left with smiles on our faces and a signed $49 piece of paper that allowed us to fulfill our wish. (don’t get me wrong I always thought when wishes were granted that it all happened at the snap of a finger and poof! It was done) that didn’t happen for us, but it was even better. The people we loved pulled together and planned an amazing party for us, we got to go to the most beautiful place in the world and get married for not just time but for eternity (and no that most beautiful place is not fresno…sorry guys, but the temple.) the ceremony was amazing we got to be surrounded by  some of the people we love and I got to kiss the man I love in a place I have always dreamed of kissing him in, no not a dark car or the top of a mountain, but in the house of God, after we promised to be true to one another and support one another in this life and in the eternities. He looked liked shredder with his mask but I never have been happier.   If you want to see pictures check  www.kilean.blogspot.com

ENGAGEMENT

This free scrapbooking design created with Smilebox

WE'RE ENGAGED

Engagement

So we have decided to tie the knot! Yep it’s true. (I’m writing this after the fact, but will write it as though my name is still Anna Puzey.) I am really really bad at this but I will attempt to tell you about how Chad proposed, which time you may ask. Probably the 765^th, if you would like to know how he asked other times, I will let you know, but we consider this the “real” one…whatever that means. When I first met Chad I did something for him that actually as unselfish as it seems was also a huge thing for me as well. I have a bucket list, well actually more than one, but one of things that is listed on it is to fold a thousand paper cranes. I had waited and waited and multiple times attempted to accomplish this and well, it never worked. I met Chad the beginning of October 2007 and a few weeks later he got diagnosed. As soon as I found out I made the decision that this was the time that I would do that and so I started to fold. And fold and fold. I sat in class and in church and pretty much everywhere and folded. And about 2 and a half months later I finally finished. I sent them to Chad for Christmas with if you know the story of Sadako , along with the attached wish.

Time passed and I never knew what he wished for. But I found out this week. I found out that during all of this fight against cancer, Chad never wished that it would go away…at least not with this wish. But that instead he had help onto it. Chad gave me a box which inside had a silver folded paper crane. One that he had apparently been holding onto for a long time. It was the one that held the wish. He gave it to me and told me that his wish was to be with me forever, that it didn’t matter how hard we had to fight, it didn’t matter what life brought us or how hard it was that his wish was and always had been to be with me. To his I am sure disappointment I didn’t cry but my heart burned and leaped as I knew that that had been my wish from the beginning as well and it didn’t matter how un ideal the situation was we both got what we wanted and both of our wishes had come true.

Another Good Note

                I watched the video again this morning of the good news and feel that my expression is not the best representation of how I really feel about everything.  I love that when I write I can put the nausea away, I can sit and focus and allow my heart to be without the ever presence of the physical things that would threaten to change it. 

                At any rate, it is a sobering thing to know what is to come with the transplant.  There is no shortage of reason to be anything less than afraid.  However with this, today I have every ounce of courage a man could have.  Just three weeks ago I checked in for an induction phase of chemo.  Sure enough it has been nothing more than life threatening and challenging on all kinds of levels, but I am still here.  Not only that but the momentum of surviving yet another section of this story and coming out with more than I started, gives me even more strength. 

                This next time will be a time of rejoicing.  I still have several doses of chemo for my brain and my cells.  I will be doing them here at the hospital and from clinic.  Today however the docs came in and told me though I will still need to be monitored closely, but that I am able to leave the hospital.  Er visits and clinic visits will be on a day to day and as needed basis, but know this.  3 weeks ago I came to the hospital with the unknown of treatment ahead.  I came with a body full of cancer, again and I did it with the strength of all of you, the presence of angels and the hope of a good woman.  Today I come out of the hospital nearly 20 pounds lighter, without hair, and with a different cellular count.  But today I COME OUT CANCER FREE AGAIN, holding the hand of a Great woman, and with the un doubtable continued knowledge that God has a plan and we are all a part of it.  May we all be so blessed as I am this day.  I pray in gratitude, I give my thanks to each of you and I look forward to the miracles to come, even at the great cost of faith for each of us. 

As always Have Heart-

                C is still for Chad-

what has been going on-

              An update on the day to day here in week 2.5 which is a little more busy than expected.  The following is a list of the medical issues and complications.  Then there is a little bit on how I am doing- 

5 day period:

A typical reaction to counts dropping-  2 days in bed with the inability to sit or stand…. Inconclusive battery of tests.  Have recovered for the most part-

Normal neutrepenic nasty feeling …  sick daily, but definitely manageable.

The sinus infection has caused some reactions, a cough that has kept me well aware of the necessity of narcotics  

Your run of the mill Throat and Mouth sores.

Hair-  …. Gone (I know its been gone for years )

Vincristine reaction-  morphine 3x daily for GI pain

Multiple fevers from neutrepenia.

4 or 5 chest x-rays

Several Ct scans

Platelets dropped to 11-  reds 23- (many transfusions-)

Anaphylactic reaction to a platelet transfusion. (could scare you all with the details, I am grateful for a  competent team and blessings from heaven.  2 hours of fighting for air- never more aware of the fragility of life-)

Bone Marrow Biopsy -  2 holes  1 bent needle…. And a large sample.  (Team Did a Great Job)

                   So all of that has its place, but what I have experienced this week has far more weight than the bits of drama.  This week had plenty of reasons to be down, frustrated, scared, and well,  just not thrilled about any of the prognosis.  However I have to say this week was a great week.  You have to understand though some of these things were new and difficult, I am not unaware of the existence of these particular setbacks.  With this said, I spent plenty of this time dealing with the realistic side effects which can be grim, but we all must so that we can feel the power of what is really occurring in and around us-

This week I had the sobering opportunity to experience many events that either move you forward or make you question all.  My heart has grown and in the weakest moments when even laying still seemed an impossible task I found the support I have fill in the darkest places and settle my soul.  There are moments daily when, while I know why and what I am doing, it remains a challenge to harness the necessary courage to take the next step.  It is no different for anyone in a situation that challenges their ability and threatens all that they know.  However, I have found myself in these moments of seeming terror with a new resource of strength.  I find that when I am at my lowest it is the time when I call upon the strength of each of you.  Every note, call, message, and prayer are what I go to when I am scared.  I have messages from so many of you that while I may not respond to, have that power to lighten the load, and allow me to move forward.  The gratitude I have is immense.  I hear these comments of how inspiring my experience is and cant help but feel as though the inspiration is really found in the outpouring of love from all of you.  I watch patients here handle far greater disease with far greater composure and pray for such strength.  Until then and continually, I am grateful for the belief, the faith, the dedication and for you joining me in this great journey.

                I will post later the results of the Bone Marrow Biopsy.  We have come a long way in just a few weeks and I look forward to the victories and news to come.  I know that in this there will be many weeks like this, challenging ones.  I am grateful I can share the low points and the high.  I am grateful that with everything that is going on, Cancer has its place, and for each of us we have the ability to let cancer or whatever it is that besets us, to only be what it is, and Nothing more.  I am grateful that Anna has helped me keep this focus, and continues to be a great link to peace.  May we all be so blessed, I pray each of you can feel of the greatness that is being poured down from heaven-  I will post a video update soon-   C is Still For Chad-

-Wed

the taste of chemo and the sting of procedure.

The initial wave of anything always takes you by force.  It seems though even when you know what you are up against the things that you have defeated once before often are just as difficult to manage time and again. 

Today I can feel the chemo beginning to take effect.  My mouth is forming a layer of dying cells and the flavors of a few nights of chemo are beginning to really create an aftertaste of just sweet chemoliciousness. 

However the most noticeable change I feel is the physical depression that accompanies so much cell death.  There is something about the destruction of so much in your body that leaves you in so many ways just spent.  In a few days my white blood cells and red blood cells will no longer exist.  Neutrapenia is the goal of these doses, and we are on schedule for the fallout. 

Other than that the biggest thing on the docket today is the lumbar puncture (LP).  This will be a procedure in which a long needle will be placed through my inter-vertebral space in order to gain access to my spinal canal.  From this they will aspirate a selection of the Cerebral Spinal Fluid (CSF).  In its place Methotrexate will be inserted so that it can fight any potential cancer in the brain fluid.  Once labs come back from the sample it will be determined how many doses of this treatment I will need. 

You will have to forgive me for my lack of zeal this morning.  The Lp’s are of all the procedures in the hospital, the most dreaded for several reasons.  It will take some adjustment to this new found physical state to really feel quite settled I think.  At any rate there is goodness abounding.  I am so grateful for the excellent care I am receiving from everyone here.  I also take solace in knowing that the most difficult of the procedures and other complications in life will get taken care of in a 24 hour period.  Granted I will have several of these but this one will be behind me and us quite soon. 

Also I am excited for the return of my love.  She is just days away from joining me in this battle and not a moment too soon.  Pray for her safety if you will, and also for the condition of her heart.  Those that know her know of her beautiful soul and ability to care.  However with this the burden will be something new to manage.  I am so grateful to her and for her and know she can rise to the task. 

Alright, well I am beginning to dose off but wanted to get this off.  I hope whatever it is you are working on today, you will find confidence in and the strength to overcome even the smallest of things that beset you. 

Take care and Have Heart- c

To my friends and family, the doctors and staff who will treat and the onlookers who will only know this great story from afar I would like to say a few words.
In every life there are moments of great crisis. Moments that cause us to shake from our very souls and reach deep within that we might find a way to persevere. For 1000 days I have spent time trying to complete just such a feat. How do you continue when your kidneys fail? How do you have strength to continue a regiment when it is unknown whether or not in its completion you will be healed. How do you keep focus as the fellow fighters around you are called into the next life to continue their greatness. And how is it that in the greatest moment of darkness that we continue onward.
I have struggled with this as each of you have and will in your own lives for some time. And while there have been days of great seeming danger, of almost certain end and of a definite excuse to throw it all in I have this to say. I have faith in Jesus Christ. I am very conscious of an All knowing, All Loving and ALL Powerful God that is not only aware of my struggle and yours but is wanting for nothing but Greatness for each of us. We each must come to a place within that we can trust. From this moment onward in my treatment there is no option for anything less than complete confidence in His plan, in His great wisdom and in His Great Love and Compassion. I am so grateful for all of the blessings that he has seen to give to me. Throughout every day of this journey I have seen the Savior in his great warmth around me. He has given me so much that while there will be days that I will shake with pain, that I will not understand from the great darkness that chemo affords hwo I can even think to press forward, I know he will carry me.
For all who read this and wish to be a part of this journey I say Have Faith. Listen to his Love and Fear not for Our God is Great. All of you must know there is no Loss in this. There is no day no tear, no drop of blood, no dose of chemo, not the tiniest of feeling that He did not already suffer for each of us. I would wish this great battle upon no one but am greatly Honored to fight with those who are currently entrenched in battle. I am honored to share in the same great diagnosis of my fallen and one day Risen comrade Donny Querin. I pray in this war that I may demonstrate just a fraction of the GREAT FAITH AND DEVOTION HE CARRIED AND BECOME EVEN A GLIMPSE OF THE MAGNIFICENT WARRIOR HE WAS AND IS.
And I say to all of you who still fight, who will join me in this great eve when there is nothing we hold onto but faith, I say pray. I say thank God that He has given us His son, that he has given us Love. We do not go into this alone and there will be no moment too great; that His love will not be sufficient. If you have things that keep you from feeling this, you have not time to wait. In this moment of great calling there is the choice to be made. If you will join me I want you to know that in my camp to be a part YOU must believe, you Must have faith and you must trust.
Each of us must have struggle, this is my great cross to bear. Do not have sorrow for me but joy. Know that even through the tears that fall now, I know that I will only be blessed in this great endeavor. And I want also to say how grateful I am to each of you, for each of you and for the example you are to me in your own ways. I have made it here through this 1000 days not by my own strength but by the faith and help of those of you around me. You have prayed for me, held me and guided me through. And so I ask again in this great hour of preparation. As I go into battle forget me not. Forget not the fallen that have gone before and stay with me as I fight. There will be great need for support for not just myself but I pray you will keep in mind those so near and dear to me. Please keep my family in your prayers. There will be great weight carried by them in so many ways. Financially the burden will be great, and so will the emotional support required. And to my friends – thank you, whether you held me through the last great battle or in prep for this one, you are a part of my soul. I love each of you and know that even in this difficult moment, I am a blessed man. Have faith.
And I want to give a special thanks to my beloved, my beautiful Anna, who even now is serving our Great Lord in Germany. I am honored that she would love me and be prepared to join me through this. Please keep her in your prayers, and hearts as in the next few weeks she returns to california. The next few years will be most taxing on her. We will need help financially and emotionally as she will be my full time caretaker through this battle. The bills will be thousands of dollars monthly and our full time occupation will be the survival of me. It is hard to ask for help knowing that I will never be able to give back what is given. But with this I know that we cannot survive without the support of each of you. And I also know that I will never be able to thank you for whatever sacrifice you can afford but know this. Every dollar given will ease the pressure and help. Every tear, hour of prayer, phone call, time spent talking with me, will be used by me to survive. I will not be able to give thanks but know that my fighting is my gratitude that as I lay in the shadow of death the love given will be my fuel.
And in case you really are joining this battle for the first time there is something you must know. My name is Chad and I am a SURVIVOR. Depression has not stopped me. A broken back did not slow me down. A father leaving did not dishearten. 3 years of chemotherapy did not kill me. And the hundreds of thousands of dollars in bills has only left me begging the question. Is all you got? 3 years ago I stared this journey. Cancer has not knocked Once, it has not Knocked Twice, it has knocked Three times and in this I have this to say.
Cancer Know your place. Know that My God is great. Know that I will Win I will NEVER SURRENDER, and my body may wither it may be ravished, BUT MY SOUL WILL CONTINUE TO SHINE. My name is Chad Hickey I am the Son of a King. Have Heart and know :
C is STILL for Chad Not Cancer.


TO DONATE

CLICK PAYPAL BELOW, (you dont have to have an account to use it)

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Please make checks payable to
Margo Thompson
2353 trotter way
Walnut Creek Ca
94596.
Thank you from the bottom of my heart.

Bittersweet Victory

3 years ago I started out on a journey to complete this regiment. Today I am done. After thousands of pills and IV's and Obstacles, I am done. I am afraid however the beauty of this moment is overshadowed by new information. This morning for my last day of chemo I underwent a bone marrow biopsy. My platelets have been very low the past few weeks and I had been concerned. Today at roughly 2pm I was re diagnosed with Leukemia. There is a 50% blast count in my bone marrow and treatment ironically will need to start immediately.
I want to say something for the record. I am grateful to be alive. I have stood and fought with great warriors and friends through these storms. This next battle will be nothing short of horrific but I find peace in knowing that Angels do surround me. I am grateful for the love and support and know much more will be needed for the next chapter in this great tale of adventure.
I also want to publicly thank the doctors and staff at UCSF for the amazing to date treatment, and for what will come next. Further more I want to thank my roommates from the past few years, my friends, my beautiful family and the mentors and loved ones who have guided me through this darkness.
I have no doubt of the tears that will flow and that currently are. I am grateful for your heartfelt prayers and comments. I also wanted to let you all know that after nearly 3 years of treatment, a second cancer and all of the complications between I am confident in two things.
The Lord Loves Me
And
C is STILL for Chad Not Cancer.

Have Hope- Chad

If you are in Fresno tomorrow (fri) there is a Celebration at Maroo (bullard and west) cause while this all sucks, we still need to revel in the first victory-

And to my Tri Team- On Saturday and at Wildflower, Know I am grateful for your struggle, for your service and for your love. GO TEAM!