December 30, 2008
"May it be a NEW YEAR"
Chase's cat scan revealed gall stones which we will hope will pass naturally. Obviously, this has been a very difficult time but the pain meds are being utilized to decrease the discomfort. In addition, Chase has the fever and infection which still has not been identified diagnostically.. However, antibiotic treatments are being administered. Chase will be transferred to OICU tomorrow, as soon as a bed is available. The hospital is packed and I personally can't visit until my cold has subsided. In the interum, Brett Mimm has been an angel and great friend. He has been by Chase's side throughout this ordeal and states he actually prefers his bed at CHOC vs. his home bed. Whatever the case may be, how comforting to know Chase has a buddy to laugh with, talk with and just 'be'. I plan on a quiet New Year's Eve with friends and family. I am praying for a better year, what with God's will, may you all enjoy the same....Happy New Year...xoxo,Kim
December 29, 2008
"Chase"
Chase was admitted to CHOC today for abdominal pain and a fever. He has had numerous tests done, received blood products and is getting a cat scan as I write. He refused any visits on the oncology unit today and stated a desire to be alone. I can't imagine what it was like to re-admit on the third floor oncology unit. I remain steadfastly supportive and in awe of my son, Chase, for the journey he has endured thus far. By the way, Jozie is miserable without the chaos in the house, all is quiet on the home front and the atmosphere is quite dismal compared to the joy of Christmas previously shared. Let's keep the faith and again, prayers so eagerly appreciated. xoxo,Kim
December 25, 2008
"Clearly"
It is with happiness in my heart, I wish all of you today, in the weee hours of the morning, MERRY CHRISTMAS and quietly surrender myself to the idea that this is a very significant holiday for my family. I have all my four boys with me and a loving dog, renamed 'JOZIE' ( 'Joe she' turned to JOZIE- boxer/Quickel).Notwithstanding the frequent pottying problems, Jozie has brought light and laughter into my home. We all can't wait to greet her, play with her and be comforted by her incessant wish to follow us individually and together where ever we shall go. Her genuine love of life has replicated ours....I watched Chase run around the cul de sac as his brothers prompted his endeavors, as well as witnessed Corey on his skateboard being run ragged by this very enthusiastic boxer....Not to mention her adoption, Jozie was born on 12-20-06, 17 years to the date of Chase's birthday. Once Chase met her, on his real birthday, he said he wanted her and left for the Morongo resort and casino with friends and Corey. I have been told some details and some omitted and the bottom line is that Chase has been quoted as having the best birthday of his life...That alone, is a miracle and hopefully, there are more around the corner. Again, as we celebrate today the birth of Christ, may we also remember all the miracles that touch our lives and give us faith renewed. xoxo,Kim
December 21, 2008
"A very special rescue (See Dec 20th posting to catch up)"
Kim, I don't think I'll ever be able to find the words to explain to you what a blessing it was for me to meet Chase today and to even play the slightest role in helping to make his last wish come true. It is obvious from the moment you meet Chase that he is an amazing, kind, very special young man. I have been doing rescue work for about 5 years now and I have never felt more honored to be part of the rescue community. It was nothing short of a privilege to meet you and your son today and from the moment I sent you off to rescue Diamond, I have been thanking God for this opportunity.
Kim, I can't begin to imagine what you are going through as Chase's mother, but I can tell you that I've spent hours on his web site tonight just reading about him and his journey, and what an amazing woman you are for bringing such an exceptional human being into this world; and for being so stoic through an experience that a mother hopes to never endure. I know in my heart that God has a very special purpose for Chase; a purpose that we cannot even possibly understand here on earth. I can tell you that if he managed to touch my life so significantly in the 10 minutes I spent with him, then he has most certainly changed the world with his beautiful spirit.
I would love nothing more than the chance to come by and see Diamond in her new home if that is something you would be comfortable with, so please let me know. In the meantime, if you could email me a picture of Chase and his new best friend, it would mean the world to me. I have sent Chase's web site to all my family and friends, and all my friends in the rescue community would like to post a thank you note to him for saving Diamond's life.
I just wanted to reach out and hug you and tell you how much I admire your strength today. I haven't stop thinking of you and Chase and I will tell you that today was a chapter in my life that I will never forget. Thank you. Thank you and Chase from the bottom of my heart for today...for the opportunity to meet him...for Chase's selflessness in wanting to save an animals' life....and for the chance to make even the smallest difference for him. I am so very lucky that God put you in my path.
Sincerely,
Sarah Ciscel, Volunteer
Boxer Rescue Los Angeles
December 20, 2008
"A Christmas Gift"
With Christmas around the corner, I thought I'd send you all some news from our home to yours on this beautiful day. Let's back up a bit and give some history. A few years ago, our family Labrador was diagnosed with cancer and we put her to sleep. Although her passing was peaceful, I promised myself, as did Dan, no more animals whatsoever...we already had the four boys to represent the 'wild' bunch. Anyway, during the last few months, what with Chase anticipating the move to live with Corey in Santa Barbara, another scheme unfolded....They have been fixated on getting a boxer puppy to raise.
I have held strong on,"No,no and no..." As a parent, I know the adrenal rush experience when you get that new pet, however, after time passes, who's lap rests with the overall responsibilities...good 'ole' mom...Hence the negativity in my response to this pet purchase gesture. A couple days ago, maybe after last week's results, I started opening my mind to the idea. Without admitting this to basically anyone, my friends Linda and Kathryn offered to check the internet for possibilities. Linda called with a one year old named 'Nate' currently at the MV Animal Shelter. Accompanied by my friend, Chris, we went and checked Nate out with the director, Brin. Brin knew of our special needs and introduced us to this rambunctious, sweet dog who was absolutely full of sure fire energy. Brin told us this dog was a gem in the rough but would require intense training, including potty training. I left relieved that perhaps I could be pet free. Brin referred us to Sara, a boxer rescue affiliate who promised to be at Lake Forest Petco today with 2 'middle' aged candidates. When we arrived, a senior boxer named 'Hunter' met us. Chase arrived and quickly indicated that he and his brother were looking for younger. We were given a newly released referral, a 2 year female boxer at the City Drive shelter. Chase, Kathryn and I fled to get first glimpses of this potential new pet. When we met 'Baby', the vote was unanimous...We'd found our boxer!! Quickly following, Chase left to go to Morongo with his older brother, Corey, and friends, since today is his 19th birthday, and what a great way to celebrate. Dan got the boys and friends two master suites!! Hunter, the older boxer, was adopted minutes later by a couple who also had an older boxer and get this, Baby's birthday is today as well!!!! With Chase away celebrating his birthday and a new dog in my house, I am feeling a bit of a reprieve from the doom and gloom. I lit a fire, the house is quiet and I have my warmest pj's on. I am finally allowing myself the opportunity to be filled with the miracle of Christmas and for today, appreciating what I have, instead of what may be to come. Word has it, there may be a dog party at my house brewing in the future and rest assured, the more the merrier. I'll keep you posted. Until then, my peace I leave with you. God bless each and everyone of you and Merry Christmas. I hope this lovely day warms your heart. xoxo,Kim
December 19, 2008
"Platelets"
We need blood, please follow the CHOC protocol and give blood and platelets, not only for Chase, but for any child/teenager and adult. Today, we were told, even the Red Cross had no blood to give and we are totally dependent currently on blood products. Call Maggi @ Blood and Donor Services @ CHOC Hospital at Orange to get the inside protocol. (714) 532-8339. Thanks for your support....xoxo,Kim
December 13, 2008
"28396 Via Nandina, Laguna Niguel, Ca 92677"
In January, Chase will receive another bone aspiration followed by his decision to get more stem cells and/or chemo. Until then, let's all enjoy the holidays and there will be a break from my blog. With love and blessings, xoxo Kim
P.S. If you need to contact me directly, please email me at This email address is being protected from spambots. You need JavaScript enabled to view it. (Please emergent only messages, no jokes, chain letters, etc.-just trying to lower the expectations for return responses.) Truly, I am trying to respect Chase's desire to stay out of the limelight and avoid any 'pity party'. Thanks for your understanding and prayers.
December 05, 2008
"Stand By Me"
Playing for Change: Song Around the World
November 30, 2008
"Slowing down time with gratitude"
Not withstanding Chase's current medical situation, I had the privilege of spending some real quality time with my four 'men'. Having to bare the incessant laundry demands coupled with their jarring and jabbing with each other....the time together was a mother's dream...The laughing, the companionship and basically just being together was extremely healing and monumental for a mother who is so thirsty for that connection. Chase continues to get blood products every three days, or so, and recently came down with a cold and missed picking up his prescription for four days, so his nagging cough had me very concerned. Since Friday, Chase has been on the antibiotics and we are hopeful, even with critically low counts, he will kick this infection soon. I have come to hear that the boys had a 'social gathering' without parental supervision and admittedly, I have mixed emotions.....On the one hand, I have maternal worries and yet, the fact that Chase and his brothers and friends were able to celebrate life together leaves me with a joy that I have not felt in a very long time. On another note, I babysat a kitty for the holiday weekend and this kitten, named, 'Baby', gave me a lot of happiness...that coupled with time spent with 'special' people (and you know who are) has left me ready for reflection upon the fact that life really should be taken one day at a time and the relationships we have are the most precious on the planet. I am so very grateful for all of you in my life. Today's sermon at church was about hope, prompting the first day of advent when we begin to celebrate the many gifts about to unfold. Tonight, I will sleep deeply with the thoughts of a hopeful tomorrow.....xoxo,Kim
November 20, 2008
"Thanksgiving"
I was just hoping on Thanksgiving that we could hold hands and say a prayer of gratitude. A prayer that would release our resentments, regrets and negativity.... instead this prayer will be of hope, optimism and sincere appreciation for all the gifts of life....like family, close friends, health, faith, our children growing and evolving, etc.... Beyond every prayer, we must bow our heads in humility to the center of everything, GOD, who gives us the will to live, survive and thrive....Have a wonderful holiday season and please love the ones you love abundantly...there are no limits on unconditional love...xoxo,KIM
November 19, 2008
"Chase's current status"
The bone marrow aspiration and biopsy came out ok, as per doctor's message. However, his counts still remain perpetually critically low and we await the day when he gets a substantial rise in these blood levels. Until then, there is no news to report and I want you all to know that your continued prayers are greatly appreciated. xoxo, Kim
Please check out the update on Pat Smith
November 18, 2008
"Update on Pat Smith : There are no words"
November 14, 2008
"Chase"
Chase went to the hospital for blood products this week Monday, Wednesday and Thursday. Yesterday, without my knowledge, he spent the day at CHOC getting a bone marrow aspiration to check for morphology and also a biopsy. I am sick of the hippa laws which disallow me to be informed and support Chase doing this all alone. Last night Chase went bowling, Cody is at a friend's house for the weekend, Corey is 5 miles from the Montecito fires and Kyle is hard at work. As a mother, I feel very helpless but remain in awe of Chase's strength. Will keep you posted as the test results unfold next week. Have a good weekend. xoxo, Kim
November 10, 2008
"Chase"
Chase continues to receive transfusions every three days. In between treatments, he socializes, sleeps a lot and functions as one like no other. Last night, Chase had a coed poker party and Grandma Sue supervised from afar the fun. I am thrilled that Chase has the will and stamina to keep his great attitude even within the midst of his blood staying so low with the counts and the reproduction not occurring as we had hoped. A stem cell transplant is imminent and maybe this time, we'll see some productive results. Until then, it's in God's hands....xoxo,Kim
October 28, 2008
"In God We Trust"
Without word from Mexico, the last five days have been somewhat blessed and yet left me filled with anxiety. I have never suffered from anxiety but found myself waking up in the middle of the night, with difficulty breathing and that anticipatory fear of the unknown....some of which was Chase directed and some influenced by other factors. I had, during the last week, felt the inevitable need to stay ultra 'busy' (and that of course, carries stories of their own)....Anyway, Chase returned home safely late last night. This morning, he got his blood drawn, then had to drive to San Diego to return a wrong bag taken and pick up Dan's original bag, then check himself into CHOC for a multitude of blood products. Although I expected his counts to be low, since during his trip he had to miss a transfusion, when the hospital called to say his counts were 'critically low', I panicked, hence then again, difficulty breathing. I am so very proud of his fortitude and diligence in doing all that he can and I cannot wait to listen to the stories of the fish caught. I will stay in the moment and relish all these days that sustain my family. xoxo, Kim
October 24, 2008
"To spend your days doing what you love"
When one twists a music box tightly, the song plays ooh so quickly and there is that resistance to slow it down yet there is an earnest desire to enjoy a slower pace and let the rhythm comfort rather than race one's soul...Yesterday, Chase flew with Dan to San Jose, Mexico, to fish for four days. He will go without blood transfusions and I am vehemently opposed, at this time, for this trip. However, Chase's doctors are behind him 100%.... Am I the only crazy person left on the planet????? I guess I will have to defer to 'the authorities' and relinquish my rights as a parent of a kid who just wants to fish......xoxo,Kim
October 16, 2008
"Last update for a bit"
As I write this, I am listening to a music box that is symbolically playing 'Over the Rainbow' and I am filled with tears because the lyrics represent so much of what I want to say. I am taking a break from the blog for a bit until I have news. Let's hope no news is good news and know that I hope everyone of our supporters will pray everyday and let the blog live through your words and actions and for now, that will be our testimony of the spirit of love, support and faith...Until then, I remain, as well as Chase, so very hopeful, grateful and eternally invested in living.....xoxo,Kim
October 14, 2008
"Update"
Chase received a stem cell transplant again today, as well as other blood products. He is so fortunate that due to your contribution of blood, he has had no problems lately getting his life renewed through your 'gifts.' In addition, I had a lengthy discussion with our lead doctor, Dr. Neudorf. I addressed my top three concerns: 1. Chase's counts are not coming up, even with frequent blood transfusions. 2. Chase wants to move asap to S.B. and the environment will be non-sterile with a tad too much partying thrown into the mix (i.e. although Chase will have his own room and bathroom, the house in Isla Vista, will be comprised of a bunch of 21 year old Seniors who are at the age to 'party' and basically do whatever they please) and 3. Chase's nutritional intake is very limited at this point and I so worry about his body's ability to fight...Dr. Neudorf reiterated the same concerns but wants Chase to live his dream, as do we all. He stated that Chase is far from out of the woods and will encourage and recommend a move in date to S.B. after Thanksgiving. God willing, today's stem cells will accelerate the blood reproduction and give him, for once, a favorable increased count so we can be more supportive of the move to Santa Barbara. In the meantime, Chase is taking every opportunity to live life to the fullest...When he needs to take a day off, he does, but other than that, fun with him is open ended.....Maybe he does take a bit after me, after all...God Bless you all and good night..xoxo
October 12, 2008
"'The lull'"
Chase continues to get blood products every Tuesday and Friday. Next Tuesday, Chase will get another stem cell transplant. Chase still has aspirations to move to Santa Barbara as soon as his counts appear to be improving. For now, we are at a standstill and maybe that's okay because I'd certainly rather have it this way then back to inpatient hospitalization. I hope this finds you and yours well and safe. After attending my cousin's daughter's wedding in Minnesota this last week, I relished the element of my dear family being reunited, and of course the awe of a beautiful bride, Christina, saying her vows with genuine commitment and devotion leaving the audience spellbound by her mere presence. Congratulations Mr. and Mrs. Edwards....xoxo,Kim
October 04, 2008
"Just a quickie"
Chase went in for plateletes Friday at Choc and then quickly came home to go to the Angels play off game with 2 friends (tickets compliments of DQ)so today he is laying low. I encourage any of you who are platelete donors to keep giving, as it is so very needed. I leave for Minnesota Wednesday for my cousin's daughter's wedding and it will be fun to be with my extended family, maybe even a reprieve from all the comings and goings these days. I pray that my next update will say that Chase's counts are going up and these constant transfusions have diminished...Please join me in that thought and prayer...xoxo,Kim
September 29, 2008
"Letting go"
Chase refused visits today. He received a stem cell transplant, 2 units of platelets and red cells all alone and in one day. He hasn't eaten much whatsoever but was discharged tonight from a 4 day stay at Choc. When he got home, Grandma Sue and I had prepared a steak , corn and biscuit dinner which he vehemently denied. At this point, I am just so grateful to have him, at 10 pm at night, home in his bed. Dan will take him fishing Wednesday for a full day and Thursday, he will get his blood drawn and probably go back in for transfusions. Cody was diagnosed with a serious case of staff infection and we have to isolate him from Chase for obvious reasons. The cure for breast cancer walk this last Sunday was very emotional given my mom's current survival, as well as one of my breastest friends, Christine. The stories that were told, the multitude of 500 survivors, the doves flying, and the memorials of those who have passed, such a day...I feel so very touched by everything these days...and so very grateful for those of us who have the will to challenge what life has dealt us...especially my Chase, who tenaciously represents the will to live and not only just survive, but to thrive. Even though he is grouchy tonight, I will give him the space to breathe, out of the confines of third floor oncology, where many others will never see the light of the day outside of the walls of Choc oncology. May these stem cells take and allow Chase to depart to Santa Barbara with the wind behind his sails......xoxo,Kim
September 26, 2008
"Chase"
Chase is being readmitted to the hospital today. Please no calls at this time. We will keep you posted. xoxo, Kim
September 25, 2008
"Optimism"
Today I am struggling. I want to be that person who emulates that the glass is half full as opposed to being half empty but I am ANGRY and perhaps a bit premenstrual, but the fact that Chase is in pain and suffering from this bout of shingles is really breaking my spirit. Next Tuesday, Chase will receive another stem cell transplant and that will leave us with 4 more bags of these 'super cells' and then we are done with that option. I am feeling extremely pessimistic and resentful and am using this as my safe place to vent. I think it's time to call it a night and end with a message to all, don't take anything for granted, say a prayer of gratitude every day, remember the blessings you have and for every negative thought, add three positive to the equation.. .Tonight, I am greatly challenged to practice what I preach but rest assured, I will be congruent with these affirmations...#1 I have four sons who are alive. #2 Chase is the biggest fighter on the planet. #3 I believe in God. xoxo,Kim
September 24, 2008
"Glad To Have Yesterday Over"
Monday was a full work day for me and as the day ended, I looked forward to attending the breast cancer fund raiser with my mom , and two of my closest friends. The event was very special, given my mom is a breast cancer survivor and my other best friend, Christine is also a breast cancer survivor. Anything to support the cure, right??? When I got home, Cody, my youngest son, said he had a large "bump' on his cheek which was hurting him and inflamed... immediately, I went to that scary place when Chase had the "bump" behind his ear six years ago, which grew and grew and later redefined life as he would know it. I have to admit, I panicked, we went to ER and barely made the Kid's Doctor clinic... They have taken a sample of the excretions and we will know tomorrow the results. In the meantime, yesterday, Chase broke out with shingles, a painful virus coupled with the need for additional blood transfusions. Then he got on the wrong train, he wanted to go to Santa Barbara and got to San Diego County and realized he had been ill-advised for the train choice. He refused a ride and instead went on a bus to S.B. to visit his brother, Corey. The pediatrician said Cody is very vulnerable to getting a staff infection and his left side is already infected, he can't surf and can't be around Chase due to infectious transference. Chase arrived safely to Santa Barbara, Cody's inflamed area is better after he started on 2 antibiotics, my nerves are a bit frazzled but I continue to be amazed...God has given me a strength I never knew was possible, a will to persevere...the outlandish belief that even after yesterday, life will get better. I pray every day for the health and longevity of my children and I do consider every day, especially during these precarious times, a true blessing. xoxo,Kim
September 21, 2008
"The gift of life"
Chase got a nasty cold on Thursday and I went into a paranoid state. This has been his 'first illness' post hospitalization so my fears were up. Friday, the counts were low and he drove himself to Choc, which actually offered some comfort to me to have his body checked out before receiving blood products. I was fully prepared that he would be admitted as an inpatient and when he came home later that day, I was amazed. Chase said, without a fever, he could stay home and with that I rested peacefully. Saturday, with the blood drive imminent, I got busy with the day.. Chase called at 11:45 (just 15 minutes prior to the event opening) and stated that he was sick and wouldn't be able to attend. I told him that there were several people looking forward to meeting him and he needed to go. When we hung up the phone, I got to my senses and thought Chase was right and shouldn't attend, his recent sickness and low counts would not support being in a public place with strangers, shaking hands, etc. so I quickly called him back too late. Corey, his older brother and friends with Chase, were already en route. Anyway, Chase went and met a lot of lovely people. There were 26 new bone marrow donors and 24 units of blood donated. Dr. Mogavero is a saint...He put together a wonderful opportunity for people to give their blood, families were there to actually visualize the importance of the gift of blood, and Dr. Frank provided an unbelievable day for help for many. I met the Barkers who, unfortunately, lost their son recently from this horrid disease. As we spoke, it took all my strength not to get down on my knees and ball not for a minute but for what feels like an eternity...Their strength, words of comfort and ability to give to our family, given their recent loss of their 14 year old is profound and I feel so blessed to meet them. May God Bless the Barker family and keep them tucked in your prayers. Thank you, Dr. Frank Mogavero for your wonderful opening at your new office...my personal plug...to everyone, if you need braces, go to Dr. Frank.. our personal "SAINT"...xoxo,Kim
September 17, 2008
"ANALYZE THIS"
I woke up this morning after the most vivid, horrid nightmare of my life. There was a party going on at my house and there were hundreds of people, all from so many sectors of my life, old acquaintances, neighbors from long past, current friends, colleagues, friends of my kids...really it was probably the hugest party I've ever put on and what was amazing was that everyone was so relaxed....I was sitting on a lounge chair, in this dream, and someone said to me Chase was crying...My first thought, was Chase doesn't cry so I leaned up to hug him from behind, and it appeared he was sitting on several people's laps.....when I went to hug him, he fell off the laps of these people and turned around to face me. His eyes were blood shot and he told me not to call the hospital...Then, I noticed, he was crying silently and his tears were falling down his face....He quietly said to me that the mouth sores were back....At that point in my nightmare, I ran to call 911 and as I did, I was screaming but no one heard me....Here's my dream interpretation....The unconscious lets our dreams release whatever is truly going on deep inside our souls. It is a healthy valve which allows us, as human beings, to purge whatever we may not be able to process or digest at the present day or time in our lives. At the end of my life, I truly hope to have everyone around me who has a funny story about us, or a connective memory to share and that in and of itself will be my perfect exit...I feel there are a few people in Chase's life who currently provide the kind of support that he needs, and therefore, the symbolism of the 'lap holding'...Chase wants so desperately to be independent and when I try to intervene, he relinquishes me from that responsibility, hence, the gesture in my dream that he falls off the laps when I try to comfort him. The mouth sores are the reminder of last year, when Chase got second time cancer and the doctor at Mission ignored the warning signs, meaning, that cancer/leukemia can first present with these sores....Obviously, I am now becoming obsessed with fear that Chase's counts are continuing to remain lower and lower and that his blood is just not reproducing.......Thank God my nightmare was just a bad dream...I woke up startled and thought to myself, get a hold of yourself, Kim, there is much to be grateful for.....Sweet dreams for all of us tonight and always.. keep the faith....xoxo
September 12, 2008
"Chasin' Dreams"
The crew caught and released a 200 pound marlin and saw over a dozen whales...A fishing excursion to be remembered. Chase will undoubtedly return to the hospital for blood products in the morning. Corey is leaving permanently tomorrow for Santa Barbara and Chase will follow when he is more stable health wise. The boys, aka "my men" have had some real bonding time and that is the very best a mother could ask for. I am filled with mixed emotions over the time passing, such great memories coupled with the set backs. May the recent stem cells jump start Chase's blood reproduction, and add in a mild graft vs. host disease and let life begin...With that the rest is history...xoxo,Kim
September 09, 2008
"Super cells may you deliver"
Just a quick update: Since the successful fishing trip last Thursday, Chase again, readmitted last Friday to the infusion clinic...He was on the way there, when the call came in that there weren't blood products available, so he returned home for a five hour wait until the Red Cross could transport platelets and red blood. Kyle flew in Friday as well, and I finally had my four boys all at home for the weekend. Certainly they all took their turns razzing me, but the simplicity of having all the beds filled with "my men" was a moment of pure bliss. Please don't take your family time for granted, it is so precious and as you know, anything can happen, there is no pause button in life and thank God for the time we have at this momentary second in time. I felt especially weepy as Sunday came, knowing everyone soon would be going separate ways.... We began the morning with chaos, deciding on our Christmas picture theme, finding an agreeable outfit for all and then capturing the perfect photo. Katherine and Daniel Sternfeld are our million dollar photographers, with their patience, talents and "calming" demeanor, we got the project completed...You'll have to wait for the results but I'll share the theme, "Home, Sweet Home." What a perfect sentiment for the miracle of this weekend, all the 'men' being safe and sound, snugly sleeping, with full bellies and plenty of love in their hearts...and for that, I remain eternally struck by appreciation and gratitude for this significant reprieve from all that has happened in the last 5 years. Kyle left Sunday, Cody beat me in ping pong 24-22, first time in our lives, Corey packed for the move to Santa Barbara, and Chase was wiped out and prepared for today...more blood products and a stem cell transplant, AGAIN....Thank God we have more stem cells available and until Chase is making his own blood these stem cell transplants are vital. As you know Dr. Frank Mogavero, is doing a special blood drive, including bone marrow testing at his new office in San Clemente on September 20, I plan on being there, and hopefully there will be a great turn out, not only for blood for Chase, but for all people needing 'the gift of life..' God Bless all of you, xoxo, Kim
September 05, 2008
"A Boatload of fish"
Corey and Chase went out on a full day charter yesterday and wound up catching over 100 pounds of fresh yellow fin tuna. They proudly reported their success and the abundance of their hard work was remarkable. Chase is planning on moving to Santa Barbara with Corey , his older brother, very soon and I find the whole plan ridiculous given Chase's current condition...but it is in the hands of God and the doctors. I will keep you all posted. For now, it's one day at a time... Great Grandma Mabey died Wednesday at the age of 96. Dan held her hand while reading,"The Five People You Meet In Heaven" and as she took her last breath, Dan was able to tell her to go peacefully and so she did. I am so grateful for the time I knew this very wise, spirited woman who appreciated a good laugh and the benefit of family. Mabel Richardson, you will truly be missed...xoxo,Kim
September 03, 2008
"Brothers"
I had decided to go to the beach for the last day before school starts. The call came in that Dan's grandmother, Mabey, was on her death bed in Florida and he couldn't fulfill his obligation to go fishing with Chase. So, we decided to appease Chase and go out on 'Chasin' Dreams' and Chase insisted we leave at 2:30 am, which we did. We got fresh bait and went full throttle to the kelp patties at 201. I have never been sick but ran into some sort of infection and had to lay low for 8 hours. I reminded the crew that under the circumstances, I couldn't be the life of the party but God willing, we would still catch fish....and that is what we did....Minus a few bites which broke the lines, Corey managed to keep a 25 pound yellowtail that Chase gaffed and last nights dinner was a hit!!!! My favorite moments yesterday: watching Chase instruct our crew on catching fish, his relentlessness on handing the pole back to the original fisherman who landed the fish, refusing to be the recipient of the final capture, listening to my two boys(aka men)struggling to catch the 'big one' and watching Corey's arm over Chase's shoulder, a testimony of their love for each other, the glory when Corey who swore he was our bad luck fisherman, finally landing this yellowtail...and the abundance of knowledge Chase exhibited for the entire duration of the fishing trip. Needless to say, we were out on the water until 7pm which made it a 17 hour tour...Chase went to the hospital yesterday to get lots of blood, platelets and red blood products. He is getting new blood every 2 to 3 days...I am going to request another stem cell transplant as I believe that his body is not making blood and hasn't for a very longtime. Chase remains at home in his bed and virtually awaits a day when the counts will show an incline and he will not have to go in to the hospital. Corey, on our trip accidentally passed over Chase's fish line and the hook hit Chase's finger, the blood began to flow and my paranoia ran high. Fortunately, the paper towel wrap secured the problem and Chase continued to fish. Life is an adventure and the times we are having are not the most cautious...but, for Chase, life is a blessing and one in which he has chosen to live to the absolute fullest....remember: "Judge not, lest you be judged" ...xoxo,Kim
August 27, 2008
"Jamala Bay road trip"
Last weekend came and went quickly for the nine of us, in eager anticipation of our road trip to Jamala Bay, about 60 miles north of Santa Barbara. It is a sleepy little piece of heaven, resting off the coastline and a perfect reprieve for our crew. Before we were set to leave, Chase arose early to get his labs drawn Monday morning. The six other kids were on standby as to our departure time, given Chase's lab results would dictate whether he would have to go to Choc to get blood. I said several prayers pleading for Chase to have a break but alas, the call came in and he drove himself, once again,
for blood. I knew Chase was mad and disappointed in this temporary delay in our leaving, but he did what he always does, takes the news in stride and does what he is called to do. When he arrived back from the hospital, we were all packed and ready to hit the road...Chase, Blake, Corey, Brett and Kendra, Cody, Brad, Dan, our RV Captain, and of course me....The mood was pure exhilaration and nothing was going to come between us all having a terrific time. Once we got to L.A., our first and thank God, only mishap occurred....the gallon jug of teriyaki sauce flew off the counter and hit the floor with a massive spill ensuing. All of us rallied like a team and managed to grab every towel, napkin, etc. and asked for Dan to pull over. The occupants of the RV were instructed out, while Kendra and I did a massive clean-up project. Everyone participated in the endeavor and believe it or not, within 25 minutes, we were ready to rock and roll. With the stench and mess gone, the renewal of spirits spread among our clan and before long, we laughed about our little fiasco and obviously within the scope of life, this is nothing and I truly mean NOTHING....to lose time over. We checked into our camp site a bit before 4pm and spent the night under the stars, making a huge bon fire, barbequing, making semores, laughing under the campfire while playing the A to Z game(that's a story for another day).. and reminiscing over old stories of the kids' in years past. I tried not to stare at Chase but I couldn't help being drawn to the normalcy of this trip...to be outdoors, free from captivity... the chemo, the endurance of so very much...what a moment...if I could have stopped time...I would have.. The next day was probably one of the most poignant ones in my life. All seven kids, ranging from ages 15 to 21, playing baseball on the beach...Chase pitching like a pro and their camaraderie infectious. Everyone but Chase hit the water, but Chase didn't seem excluded, he watched and vicariously enjoyed their surfing and boarding activities. Chase fished from the shore but eventually got tired and joined us on the beach for some "R and R." The kids slept in tents the first night and the second night, the majority opted for the RV. We returned this afternoon, Chase seems extremely tired, as we all are and he drove himself to get labs drawn. His counts are again, very low, so he will return tomorrow for more blood. I remain eternally grateful that he is at home but face the grave concern that his blood is just not rebounding...Give it more time and faith that he will start to rebuild without much more time lost. Can't wait to go back to Jamala Bay, a perfect setting for a getaway much needed for my family. With love and gratitude in my heart, xoxo,Kim
August 22, 2008
"Jackpot ahi"
The phone call came in last night around 6 pm. "Bring the cooler" Chase requested after a 24 hour excursion on the Seahorse. At the time, I was so thrilled that Chase had had a successful trip and was back safely but the real surprise came when Chase walked off the ship with over 50 pounds of fresh ahi. He stood so tall and proud that I couldn't help but feel on top of the world. Today Chase will await the blood test results to determine whether he will be back at Choc. Be assured, he'll be back on the water just as soon as he can. Have a great weekend. xoxo,Kim
August 20, 2008
"Letting Go"
I often talk about 'letting go with love' with my patients and I truly believe in that premise. However, with Chase, I find it extremely difficult to wrap my arms around this idea. Tonight, Chase left alone on an overnight fishing trip on the Seahorse out of Dana Point Harbor. The boat is sold out and Chase did not get permission from his doctor to go, but he is in charge of his destiny and made his own decision. In addition, Corey, his older brother has found a house to rent while finishing his last year at UCSB and has a room for Chase reserved. When I told Corey, I felt Chase was too fragile medically and we would discuss the move next Spring, all heck broke loose...Chase got infuriated that I interfered and Corey thought I was being hypersensitive and paranoid...I had to do an internal reality check and thought to myself, I have to stay rational when everything seems so crazy. Anyway, Chase's plan is to move to Santa Barbara with his older brother, Corey, in October and second semester, attend SBCC. I'm all over the long term plan but the imminent moving plans are ....to say the least, optimistic, at best at this juncture. Dealing with the insurance issues, Chase's biweekly needs for blood products, the financial pressures, the emotional highs and lows, really has made today a stressful day so probably a good time to say good night and God Bless..xoxo,Kim
"My Heart"
I really don't know where to begin, so I guess I will start with the positive....Being that Dan Quickel is out of town and with Chase's chronic wish to fish, Dan treated Chase to an expensive fish excursion with Dan Naughton being the substitute 'Captain.' The price of gas was absolutely off the charts. Chase was accompanied by his older brother, Corey, fresh from South Africa, and the comraderie was very special. The men left at 2:30 am and returned at 4:30 pm. Their phone availability was nil to none so I waited diligently for their stories...Come to find out, the tanks went empty so the foursome
had to head home, upon which they ran into a kelp bed which had an abundance of upcoming dorado....The adrenal running high, Chase rushed to the aft deck and threw his pole and immediately caught a Dorado (Mahi Mahi),within seconds the rest of Dorados fled the scene and the remaining crew got skunked....God was watching and must have had a decision in the candidates to land the one and only Mahi Mahi over a 14 hour trip...Thank God it was Chase...When the smelly, tired crew came home, Chase proceeded to clean his prize fish and invited his guests, Blake and Jerry who proceeded to eat profusely and devoured Chase's catch. Chase didn't really eat, but seemed to sit back and enjoy vicariously their enjoyment of his hard work. Within minutes, after dinner, his friends excused themselves, and I checked on Chase who was sound asleep in his bed. That was yesterday, and today is what may be more on the concerning side, Chase had his blood checked in the morning, his total counts are again, even after stem cell transplant, not replenishing themselves.....So again, Chase drove by himself, back to the hospital to admit to the infusion center to get platelets and red blood. He was there solo for eight hours. I am pulled by my want to let Chase be in charge of his care but fully disarmed by my ability to let go. I have never in my life felt so out of control of a situation of which I really have no say given that Chase is 18.... I rely on my faith and on Chase's internal strength to fight this beast and make the right decisions.. Chase asked me to make him a grilled ham and cheese sandwich today between lab tests and with the requirement to go to the hospital, I felt like I won the lottery. Aside from loving to cook for whomever, having Chase request food prior to infusion made my day. Any parent knows, ‘Food is love' and I definitely got my fix today. As far as the 'heart goes', I've been in a slump....I refuse to get in that dark place, but know times are precarious and that my heart is relying on the power of prayer and my gratitude for your support is abundant...xoxo,Kim
August 17, 2008
"Just a tad shy of Hohumville"
I've always fancied the story of 'Horton Hears A Who"....in fact, as a child, I read it over and over and over. I fantasized that deep inside our world, there is a very deeper one that is reaching out to be heard. Hence was born the term, 'Hohumville'.. It represents to me an eclectic group of people who have become comfortable being just that, 'normal human beings', doing typical day to day things, without drama, or mayhem...living life, maybe not to the fullest but at a level of peaceful acceptance. Today, I entered that zone. The kids, friends and family had lunch at Cafe GG...Afterward, I drove Cody around to get a new skateboard, did 5 loads of wash, cleaned up the mess from Corey's friends here last night, paid some bills, ordered pizza and watched a movie with the boys.The movie, 'Knocked Up' made me cry, remembering the births of my four boys....I started telling them stories and, in turn, they asked questions, which inevitably led to laughter. Finally, at the end of the movie, Corey had gone to bed and Chase thought my crying was ridiculous so he, too, hit the sack. I thought to myself...for this small portion of a second, I feel like a typical mom, weary from the day, but happy to be home on a Saturday night when the rest of the world may be busy, I'll take "Hohumville" for as long as I can milk it...xoxo Kim
August 15, 2008
"Return from Africa"
My 21 one year old son, Corey, returned from South Africa after being gone since January. I was a basket case all day in anticipation of that moment when he walked in the door with that big grin and wrapped his strong arms around me. I could've held him all day but released him from my grip and stared at the 'man' he has become. At 6'5", he has quite a presence and I feel that our family is so blessed to have him home safely. I prepared a traditional Mexican meal, as he has gone 8 months without one of his favorite foods. There were eight of us at the table, and the air was jovial. I made a toast to the safe return and promised a time soon to devour all his wonderous stories. After 20 minutes, Chase had to excuse himself to drive, on a late Friday, to the infusion center to get more platelets. Horrible timing, with his brother's recent homecoming. It would have happened earlier today, but the hospital was out of platelets. Another reminder that if you can donate any blood, do it and do it now. Tonight, Corey, Kendra and a few other friends will dance to music at Mozambique and revisit the 'South African' tones of this Laguna restaurant. Chase will rest at home, visualizing our family once again reunited (minus Kyle for now) and think about his next fishing excursion. I think tonight, I will sleep like a baby. My love to all of you...xoxo,Kim
August 12, 2008
"Rejuvenation Day"
Chase spent the weekend with Blake fishing, compliments of Steve and Tori DeGroote. Their hospitality and gracious invitation could not have come at a better time. Chase must have felt like he was set free as he broke the BMT diet and ventured out to dinner, lunch and went to the movies...all before setting out on a 48 hour fishing extravaganza. The fish were biting and lots of mahi-mahi caught. Chase ate fish aboard the 'Vintage' and liked it. He immediately threw it up partially for fear, he might get his stomach upset and didn't want to ruin this very special time on the water. Thank you, Degrootes, a gift truly, from heaven. Chase did labs yesterday and again the results are very low for counts. Fortunately, the oncologist decided to give him a night at home and he didn't have to admit to the infusion center until this morning. My dad and Skip were there on admission and when I followed up soon afterward, Chase was watching a movie and wanted quiet time so we went out for a bite to eat. God willing, when I returned, the doctors, nurses, lab personnel and other "VIPs" were entering Chase's room. He was on Benadryl and a bit drowsy. The container holding the stem cells was a look-a-like from 'Star Wars' R2D2....very high tech looking. The time was recorded and Chase got a new stem cell transplant. I was so excited, knowing this is his gift of life and he so desperately needs new blood since his counts are not recuperating on their own. Chase got extremely sick and the vomiting literally broke my heart. I hid my face behind the doctor as she administered these super cells and my tears were uncontrollable. Chase peeked over at me, gave me a glare, and in the midst of all that was happening, I really couldn't stop my emotions. I had prided myself from protecting Chase from my pain but luckily, he went back to laying down so I didn't have to keep my head up. Chase received a total of 360 minutes of blood products today, in addition to the stem cells. Tomorrow is a new day and I pray Chase will get to fish soon and begin a 'rejuvenation' path of recovery. Tonight, I am going to eat some freshly caught mahi-mahi from my son, who loves to fish. In the meantime, I will ask again for the prayers for those stem cells to hit his body with a vengeance, to eliminate any traces of leukemia and build Chase up to be the man he yearns to be....Passionately feeling a lot today, xoxo,Kim
August 08, 2008
"The aquarium of life"
Sometimes I repeat myself, and at my age, I will no longer apologize for that, but ask that if it is annoying, tell me. Anyway, Chase wanted an aquarium after he was first diagnosed with alveolar rhabdomyosarcoma way back in 2002, March. When we went and stopped at the fish store, Chase started picking the items he wanted. I happened to call his oncologist and the case manager who vehemently denied the purchase as part of the protocol to avoid any chance of bacteria and infection. Chase got grouchy and instead, we rented a bunch of fishing videos. Fast forward to March, 2007...Again, after diagnosis of acute myelogenous leukemia, Chase wanted an aquarium, which I refused since our last doctor's recommendation years ago, I knew it was not a healthy choice so being 17 at the time, I stood strong and told Chase, "NO." He again wasn't happy with this decision, but at some level, realized that with the upcoming months of hospitalizations and treatments, he would be absent from enjoying his 'tank.' That brings us up to March 1, 2008, when Chase came home, at age 18, with a 20 gallon tank and a multitude of fish which he proceeded to place by his bedside. I was at first upset by his younger aged adult decision to make this executive decision, especially without my approval, but relented by remembering the history of this wish by Chase beginning years ago. Six days later, my son Chase, was again diagnosed with AML. Talk about a heartache... let me tell you. Anyway, up until recently, I have been solely tending to this aquarium and I have come to love it. When Chase was in the hospital, I would sit in his bed...imagine he was there with me, and watch, mesmerized by the business, the entire world of activity going on underneath the water...it has made me feel connected with my son, Chase, without him ever needing to know my newest obsession, these fish....
Which leads me to the point of my story.....As I relinquished parental authority and as I said goodbye to Chase today, to allow him to set himself free and fish for a couple days, I felt a need to connect. My soul felt unsettled and ok, here goes those tears...I went to Chase's bed and wrapped my arms around his favorite pillow....I focused on the fish tank and there was a frenzy going on. Even the bottom catfish were peering out and surfacing for food so I secretly gave them an extra serving. Long after their extra dinner serving, all of the fish were busy, going up and down and all around....except for one......my favorite the needle nosed fish who has thrived in the tank...He remained at the surface with only this tiny flutter at the end of his body keeping him afloat...amongst the chaos, he kept his cool and then I lost mine. I named him 'Chase' because I needed some sort of a sign and God gave it to me tonight...Chase remains collected and calm in the midst of these crazy, scary times. He continues to rise to the top without a mere bit of hesitation in his day to day existence and tonight that is my story of the aquarium of life.. xoxo,Kim
"Rejuvenation"
Chase went within 15 minutes from getting his blood drawn to getting news he must go to Choc for platelets. The call came in and when I went to tell Chase he had to go, he laid his body on his bed and let his eyes roll back with utter disappointment. It is probably one of the few times Chase has not contained his dismay and let his frustration and disappointment show. I told him I was sorry for the needed re-visit to the hospital and went to my room shut and locked my door, midday, and balled. As he wouldn't let me accompany him to the transfusion visit, I returned to work with a sense of doom and gloom. I called the clinic and requested the case manager and oncologist call me immediately and couldn't stop apologizing to the receptionist, LuLu, for my incessant tears. I am fearful beyond belief and I am requesting an immediate stem cell transplant because I believe Chase's blood cells are not replenishing themselves whatsoever. We need help via more 'super cells.' Dr. Neudorf called and Chase is scheduled next Tuesday for another stem cell transplant. I am relieved and at the same time on the edge. Chase was invited by the Degroote family to go fishing tomorrow night for 2 days and I said, "Yes." Some might think this decision crazy, but I am not throwing caution to the wind. Rather, I am supporting the wishes of my 18 year old "hero" who so desperately wants to live life to the fullest. How many of us might do the same, given the circumstances???? Say a prayer for safety, health and great fishing and by Sunday night, I will again, hopefully have some great fish tales to share...God willing...xoxo,Kim
August 06, 2008
"Protected by faith"
Chase found my keys in his car cup holder. He had asked me to fill up his tank while he was at the hospital. Although I thought I had checked his car thoroughly, I never thought to check that area, oh well live and learn...Thanks to all of you who, 'walked me through' my anxiety yesterday. It symbolizes so much of what you have all given me, even at times when I've questioned Chase's survival. You've given me faith and support when I didn't feel I could do the walk and for that, I again express my gratitude. Chase caught mahi mahi with his dad today and fed many families. I think he felt prideful of his catch and obviously, thrilled to be out on the water FINALLY!!! Tomorrow, Chase will get blood counts in the A.M. and hopefully wind up at home rather than a hospital visit. We are checking into insurance options, including Cobra so hopefully, a positive resolution is imminent. I have a full belly and a warm heart tonight as Chase again, is my hero. Remember, "Nothing can touch a soul that is protected by faith." Amen..xoxo,Kim
August 05, 2008
"Standing tall"
Chase has been reclusive and I guess more or less, confining himself to the walls of his room. I am not complaining, but so grateful to have him home rather than on ICU. However, it saddens me that summer is quickly passing and his activity level has been very limited since home. Yesterday, Chase drove himself to CHOC for blood products. He was there for over 8 hours receiving both red blood and platelets. His doctor examined him and we will meet next Tuesday for a more thorough report. In the meantime, Dan is taking him fishing tomorrow (Wednesday) and Thursday, he will get his blood drawn again and probably get more blood products. I do have my fears that the transfusions are so frequent, i.e., every 2 to 3 days and then he goes back to low counts. I am going to inquire about more stem cells asap. On a different note, Chase is losing his insurance at the end of the month due to a lay off in Texas. We are extremely devastated by this horrific news and are on a speed check for options. Any of you who were Santa Barbara City college contacts, please phone me directly or email me. I need to get Chase enrolled via online classes for 12 units so he can even begin to be a candidate for health insurance continued coverage. He has not gone through matriculation, so I imagine he'll have to do the Math and English pre-testing. Any angels out there to help in this process would be so appreciated. I think Chase would welcome any time to get out with non-sick friends or family, and any diversion would be a treat. I know some of you may be reluctant given his medical condition but barring fatigue and exposure to others who may spread infection, he can participate in life and I say, bring it on....I lost my keys this morning and let it set off a day of frustration and agony but tonight as I sit to reflect, there are so many more places to put my energy and concerns. May we all stand tall for the hard stuff and let the trivial, in the big picture, subside. xoxo,Kim
August 02, 2008
"24 hours of bad karma"
I had lunch with my friend, George, and afterward bought a birthday gift for a dear friend from a boutique by the luncheon restaurant in Laguna Beach. By the time I got to my car, I had missed several messages from the hospital, indicating Chase needed to come back to CHOC for platelets...His counts were down to 5....I called Chase and he fought going a bit, in hopes to postpone it until the next day. When I told him his counts, he immediately shifted gears. I went to the bank and realized the boutique employee forgot to give me my debit card back and I went into a ballistic meltdown.Everything seemed to spiral. Today, Kathryn leased a new car and she came to the house to surprise us just as Chase was leaving to pick up Blake to play golf and Chase hit Kathryn's brand new car in our driveway. There is major damage to Kathryn's one hour new car and subsequently, damage to Chase's as well. I am feeling a tad under the weather as these events have knocked me down a bit. Fortunately, it's just about money and in the greater scheme of things I am so grateful everyone is safe...Chase appears very pale and sickly to me. I pray that he will get a rejuvenation from additional stem cells from the donor in the very near future. Happy August, enjoy the last month of summer...xoxo,Kim
July 30, 2008
"For whatever reason.."
I got in my car, after leaving El Cortez for the hundredth time on a Wednesday, to enjoy $1.29 tacos. When I left, besides being alone, I turned on the radio and two songs back to back rocked my world. I am horrible at remembering artists names or their lyrics, but here's what I want to be remembered tonight: "I hope life treats you well and I hope life treats you kind and that you have all that you have ever dreamed of...and I wish you joy and happiness but above all, I wish you love.....and I will always love you, will always love you...(To be repeated faithfully)...and the other song, "And a hero comes along....with the strength to carry your fears away, that a hero lies in you...It's a long road. See the truth, there will be a tomorrow and you know you will survive, for the hero lies in you....." Tomorrow, Chase will again get his labs drawn, Friday will be a day of blood replenishment...xoxo,Kim
July 29, 2008
"The earthquake"
As I sat in my office and the quake hit, I had one thought, "How will Chase do being alone at the house dealing with this new calamity?." My next knee jerk reaction was to worry and imagine the patients on Choc's oncology floor and other units who already are dealing with life and death issues, what a nightmare to add to their current plight. As the dust settled, Chase and I went to Choc for his weekly review. Although his counts are far from 'normal', they are rising slowly and he will be rechecked Thursday and have more blood transfusions on Friday. His pale coloring and fatigue, coupled with the low counts are surely concerning. Chase received 15 minutes of pentamidine (an antibiotic) through an aerosol nebulizer. He was covered in a plastic bubble while he inhaled the medicine and again, I found myself profoundly moved by the compliance to the protocol he has so taken in with such acceptance and resiliency. My heart wretched after Chase asked the doctor if he could go to the fair and Dr. Torno adamantly responded with a, "No, No and NO..' Later, on the way home, Chase commented that he felt if he took "Airborne", he would be fine to go. With my blood boiling out of fear and concern, I reminded him of all the sick people who might be out for fun and that we really weren't 'up' for a readmit because he most likely could get an infection from a stranger. The glumness set in and we drove home in silence. Chase's dinner, chicken fajitas, was reluctantly received, minimal ingestion, but knowingly, Chase chose not to sneak out, and go to the Orange County Fair.....Deep down, he knows how serious times are and there is no risk taken now, for Chase has this opportunity to thrive and we are not going to jeopardize that for a measly roller coaster ride, obviously we've already been on the ride of our life.....xoxo,Kim
July 27, 2008
"A little bit of heaven"
Chase had a successful time fishing, he continues to practice 'catch and release' so I didn't get the fresh fish dinner I had hoped for. That seems so minuscule in the scheme of things and I wouldn't trade any thing for the fact that Chase was back on the boat, smelling the ocean air and throwing his line into the very deep waters, forgetting about these last months of misery. Chase has spent time with Kelsey and Blake and a couple visits from other friends. More often, he rests in his bed, watching sports and just keeping life 'simple'. I heard him coughing and got freaked out which he assured me was nothing. Under his eyes, I noticed today, there are dark circles and his fatigue does have me a bit unsettled. Tomorrow, Chase will have his blood drawn and Tuesday, we will go to get a thorough clinic check up. Yesterday, early morning, I heard steps heavily moving down the stairs. It startled me in my sleep and I went to find Chase's room empty. I looked quickly out his window and discovered him leaving in his car. Wearily, I thought to myself, "He must be going fishing again..." Then, I got out of my sleepy state and remembered, it was Saturday, and Chase was driving himself back to the hospital to get blood products. I became again introspective and tearful over the continued highs and lows of this journey and I said to myself, one more time, what a soldier my son is. The house may be quiet tonight as I write but our home is back to being a place which is safe and serene and that, in and of itself, is a little bit of heaven...xoxo,Kim
July 23, 2008
"Let's talk about love and faith"
I just brought Chase a tray with steak, corn and 'crisps'. Kelsey is over and there is this abundance of adrenal circulating around the house. When Chase's discharge plans were delayed, he was, to say the least, 'restless.' Eventually, the Doctor came in with a big bear hug and set my son free. Okay, so here come the sobs, I personally have gone through the numbness, could this day ever come???, the anticipation all day to the exhilaration of this moment as I type away the best news I have been able to share in a very long time. Tomorrow, at the crack of dawn, Chase will leave with his best friend, Blake and his dad on our fishing boat called, 'Chasin Dreams.' They will be gone until Friday night and will follow the fish. I know they will come home with some great adventures to share. Please note, Chase is going with Doctor's approval and they have emergency protocol set up. Tonight, before my head hits the pillow, I will get down on my knees and say the most profoundly grateful words to God and all of you who continue to follow and support Chase's life.Maybe tonight you can do the same?????xoxo,Kim
p.s. Chase just threw up his dinner :(
July 22, 2008
"Don't miss a beat"
Chase resides still in room 301. Dr. Sender promised that if Chase can keep down a liter of water, without throwing up and/or blood , he will be released home tomorrow by noon. The house will be sterilized by professionals in the morning and I am planning to cook the best steak dinner on the planet...even if Chase only eats a bite, we will be kings at the table together. If God grants me this wish tonight, I pray to have Chase home, to revitalize our spirits within the confines of our home, to enjoy his sanctuary, his room, the security that the house he has lived in for 18 years is still his rock, and that the world around him is not filled with those who are inflicted and crying out in pain. I will relish the quietness of the night and the slow babbling from the waterfalls in our pool....To truly appreciate the simpleness and gratitude from having over five years of challenge. Tomorrow, a day so prayed for, may my next email be one of celebration...xoxo,Kim
"Getting permission"
After leaving Chase tonight, knowing we had an altercation, sent me to the bottom of the barrel. I finally let the floor, so to speak, drop from underneath my feet. I have cried incessantly since our visit and there seems to be little reprieve. Chase and I argued on his account balances at the bank and I felt non-appreciated for my efforts and criticized and of course being a woman, pms-ing as well....Quite not the best combination, I grabbed several of Chase's items in an overloaded box, which you'd be amazed I carried solo and cried my way to the car. I refused help from security, preferring to be a martyr and by the time I made it to the car, I let myself go and all the weight was lifted and dispersed within the confines of the parking structure. I sat in my car and could not control myself, I howled, cried and cursed this horrible disease called 'c'....My phone rang and the words from a special love were comforting but short lived. Chase texted me with an explanation that was minimal at best, and then called to clarify his 'banking' concerns. He then said he was "Sorry"..and that he loved me..My world is now in a state of equilibrium, my focus back to being centered.. the mayhem of my emotions will be to invite a state of dealing with 'TODAY"...As an update, Chase has been throwing up, including blood, his platelets are low even after replenishment and are not improving, and Chase is unable to eat food. The doctors have taken him off cold turkey cyclosporin which may push him into graft vs. leukemia fight and may be good. Chase will get the arm IV stint tomorrow as today surgery was too busy. I feel like my information to all of you is that, info only...Know that the emotions from my camp are difficult, as best be said. All I can say at this moment in time, if you have been prideful in an argument, whether it be huge or not, and you love that person, or rather even care, settle it... I can't stand that in our world, we let things fester and grow into an unnecessary cancer....xoxo,Kim
July 19, 2008
"A long day"
Chase's counts were so low and by the time he was wheeled down to surgery, the operating surgeon refused to do the removal of the broviac for fear of him bleeding profusely.His platelets were at 11 and the doctor's wish was for a bare minimum of 75...I silently thought to myself, how could he ever get to 75 with his counts circling at such a previous low level. Anyway, the doctor ordered more platelets and then a blood test. The results were 37 and again M.D. ordered more platelets, which as sad as could be ,were not available from the hospital due to a deficiency in blood products.( So again, I plug for more blood and platelets, bone marrow and stem cell donorship...it costs nothing and saves lives ....so why not????) Finally, Chase's counts went to 49 and the doctor agreed to do the surgery. I thought I would loose the vein in my neck when a 15 minute removal turned into an over one hour procedure....Chase's recovery seemed to be forever and by the time he was readmitted to room 301,oicu, he was asking for more pain meds. Chase is never one to make that request so my red flags are up. The doctor said the broviac was more difficult to remove and therefore three incisions were necessary and basically, all went well. The overall end result is that Chase has the broviac removed, it contained bacteria which could have killed. So here I am again setting a new date, the day the bugs 'died' and the day my son, Chase, has his life to seek...xoxo,Kim
July 18, 2008
"Support"
I'll never forget the night the 2 younger boys had finished baseball season and we were all waiting for the news who would make "All Stars", that prestigious group of young kids who would get kidnapped in the night and get to play with the 'elite.' Chase was probably eleven and Cody, his younger brother almost 9. Anyway, without their 'eighteen permission slips', I called the league president and left a message stating that my two younger boys were having a sleepover with several boys and if they both weren't being kidnapped to please let me know as I would separate the uninvited from the invited and spare feelings...just as a mother might do. Late that night, I got an anonymous call, Cody would be kidnapped and not Chase. My heart broke and I got out of bed to separate them....Unfortunately, all the boys were asleep in sleeping bags together on the living room floor... Quite a dilemma for a "protective mom"..I decided to wake up very early before the kidnapping and diffuse the situation. I overslept and heard the break in from the new coaches. I quickly ran downstairs as they greeted Cody who was so asleep, he knew nothing about what was occurring, but as he rose to leave with his new "team" and somewhere out of no where, a hand arose from a sleeping bag...it was Chase's hand giving Cody a high five and Chase told him "congratulations...." I know it sounds silly and even as I write this my computer is getting wet with my tears but honestly, it is a reminder of the way Chase silently gives so much to others and has had to sacrifice without really acknowledging his own losses. Maybe Chase doesn't look at life as 'losses,' maybe Chase looks at it all in perspective...one day at a time...three steps forward, one back and so on and so on.....Today, Kathryn and I are at the hospital before the sun rises. Chase is getting surgery to remove his broviac. He has two infections in his line and one is septic which is deadly. Chase will be in pain post surgery and his counts still very low. I know some of you want to visit, barring health issues, call me first to confirm it's okay but I honestly think the time you have with Chase now is imperative......xoxo,Kim
July 16, 2008
"Bipolar"
I have personally experienced, as well as my family, through Chase's cancers, the ups and downs. They reflect what's going on internally and externally....How true that is in life.....We have to invest in the positive, in a future unbeknownst to each of us and yet there is an earnest obsession to get to the end result so as to avoid the uncertainty that unfolds. So now, with Chase being back at CHOC OICU, the familiarity is not comforting, the infection showing no diminished state, Chase's counts lowered, and his call for pain meds has increased. I am called again to disregard my fears and rely on Chase, and of course, God and all of you supporters, to bring me to a state of renewed optimism. The LA Times article spelled out the pertinent points of this journey and it accomplished Chase's intent, with several already signing up for blood donations and/or bone marrow too. For that, I am eternally grateful. May we all say a prayer for all our children, whatever age they may, to live a life of longevity with an abundant amount of love surrounding their pure existence....and of course, let's add...a cure for cancer...xoxo,Kim
Click here for the LA Times story about Chase
July 14, 2008
"The people I know, to the ones I wish I could know,and everywhere in between..."
I guess I was ready for a huge cry tonight...My phone started ringing at my office, early this morning with the update that the article was out. I held my breath until 10 am when I rushed out to get the last 2 copies at the newspaper stand. I never realized that you put in your 2 coins and the distributor opens and you can take more papers. Wanting good karma and never being a stealer, I deposited my additional 2 coins, hoping the rest of the world has the same ethic. Understand that when you get as much unluckiness as my son Chase has received with three cancers, you start to get superstitious about choices that might create a bad vibe, karma or whatever you choose to call it. Moving on to a more emotional level, I really thought my tears had dried up and that I could live a day without being a basket case. Today, I am grateful I was distracted by the nature of my profession, I had to focus on others and their needs and traumas and I 'escaped'. Tonight, however, I got to read the profound reality of our world via the awesome descriptive piece by Seema and photos by Mark. The story was told and seeing it on the front page of the LA Times gave new meaning to reality. Even more moving, the unbelievable outpour of comments from a community, internationally at large... from so many who moved me too tears and gratitude for the goodness of people. I am so sad Chase is at the hospital tonight with a bad infection, low counts, pain in his stomach and the inability to eat... However, your words of encouragement from so many have come at such a time that I can't stop balling and saying gracious thanks. If you do nothing more today, accept my utmost thanks for your words of inspiration, your commonality in the fight, the hopes and spirit from such a diverse population who are all waiting, praying and hoping for a happy ending....xoxo,Kim
July 13, 2008
"Room change"
Last night Chase was moved to ICU room 301. It's a large corner room and I personally feel pleased over the more scrutinized attention he will receive on the unit. Again, Chase remains diligent in his attitude towards doing whatever it takes to get back out. His fish seem to circle with a sense of loneliness in their hearts, kind of like the rest of us. Chase's counts were alarmingly low when he was admitted. So in addition to the infection, the admission was pertinent for that reason as well. Reminder, the LA Times article should be out tomorrow. With love and hope, xoxo,Kim
July 12, 2008
"Room 327 Oncology"
Kyle and I were being couch potatoes and got hooked on Chase's show, 'Deadliest Catch' when the phone rang...Chase had just come downstairs to rent a movie together. When the doctor said Chase had to come in to the hospital, I felt totally unprepared. I must be in lala land because I truly thought we were moving forward without much of a glitch. The ER at St. Joseph's was packed so I had Kyle and Chase wait in the car, no need for any more infections to come Chase's way. When we got called, I ran out to get Chase and from there went the slowest process on earth. Finally, we got to room 327 and he is still awaiting the antibiotics. I was amazed to discover that Chase had silently gone through a slight fever 2 nights ago but it diminished so he never told me...However, yesterday when he was at the hospital for hours getting blood products, he requested a blood culture. Lo and behold the results were positive and that's why Chase was admitted. I kidded Chase that he will miss tomorrow the annual 'mooning' in San Juan and promised to do a double bum show to represent him properly. When Kyle and I finally left, I cried outwardly as I pushed that elevator down leaving once again, my son, Chase to face another day at CHOC. He wouldn't let us stay the night and as we drove home without him, there was a solemn silence which represented our deepest regret for the end of this day. It's after 2 am, Kyle is now sound asleep and I am left alone to feel the weight of this most recent set back. God willing, let's pray for Chase to return home asap!!!!! xoxo,Kim. Please no calls tomorrow as we will sleep in before returning to the hospital and of course, any news will be posted.
July 11, 2008
"So sad"
Just got the call...Chase has an infection and I am leaving with him tonight to be readmitted to the hospital, choc icu...My heart is broken...xoxo,Kim
**CHANGE:
LA Times article will be out on MONDAY instead of SATURDAY- **
July 10, 2008
"Fishing gone awry"
**CHANGE:
LA Times article will be out on MONDAY instead of SATURDAY- **
Don't get me wrong, having Chase home in his bed has been such a blessing but I am especially saddened that today has turned into another day at the hospital. Chase left this morning to get his labs and a couple extra tests at Mission Viejo CHOC which ended up initially being a cluster mess...still doable. I picked up Kyle, the eldest son, at the airport and we were eager to have a late afternoon barbeque. Chase left to fish with his best bud, Blake, when I got the call. Chase's low counts required several units of blood so he is at CHOC of Orange now for several hours getting blood products. By the way, thanks for our donors....the blood needs are still so necessary and almost daily needed. Chase redirects his prior plans and goes with the doctor's orders, puts his pole away and heads up to CHOC solo accepting his fate like a trooper. Tomorrow is a new day and there are still fish to be caught. Check out the LA Times this Saturday for the article and note, Dr. Frank Mogavero, is lining up a bone marrow and blood drive Sept 19, at the City of San Clemente's skate competition...more info to follow. Enjoy the weekend... xoxo,Kim
July 08, 2008
"A day moving forward"
Chase had a quiet Fourth...Basically the hospital setting has moved to our house, isolation, sterile and very quiet. Chase has reconnected with his aquarium and fish and thanks to Ronda; he has some new feeder fish available. I have felt nervous about Chase being home, knowing he was discharged prematurely and I feel Chase intuitively knows the same. Chase is trying his best to eat and I am offering a plethora of home cooked items. He is on that bone marrow diet which is very rigid and Chase was already a picky eater. Chase is pale and swollen but today his counts showed improvement. He drove himself to CHOC Saturday and Monday morning for blood products. Monday, he spent six and a half hours at the hospital getting blood. Today, we met with our special B.M.T. doctor, Dr. Neudorf, who checked Chase's counts, body and updates. Sharon Horn got Chase into CHOC of M.V. for a curbside, rapid lab draw, so our results were ready by the time we got to CHOC of Orange, what a blessing...Thanks Sharon and to the M.V. Lab staff. Chase will be treated as an outpatient, thank God, with frequent weekly visits to CHOC of Orange, which could mean 5 times a week, taking into consideration blood products, labs, and checkups. Better home than not.....
I am again called upon to be amazed at Chase's resilience, not a day goes by without his complying to protocol...seven meds a day, a self given shot of neupogin in his thigh, self induction of hydration connected to a machine nightly, truly his ability to be his own "nurse" is profound. Chase relentlessly asks me to let him be in charge of his care and letting go has taken on new meaning in my life. I will never relinquish my rights as a mother, but having a son, age 18, with adult rights, does present certain challenges. We are at about day 53, since rebirth at May 16, 2008... once Chase survives 90 days, our next big day will be May 16, 2009. Until then, God willing, each day is a miracle and I do believe in miracles. Don't wait for the day you need one, start to believe today in the faith, hope, love , power of prayer that is abundantly present in every breath we enjoy. Every day, I take a quiet moment to say a prayer of gratitude and I allow myself to cry in my own time and space for the trauma that my dear son, Chase, has endured....God Bless you all for your support...xoxo, Kim
July 03, 2008
"I've got something to talk about"
Talk about love.....So, I busy myself today with the shannanigans of getting prepared that today may be the day....Early phone calls, a jog in the park, my house prepared with window cleaning, house cleaning, carpets cleaned, filters replaced...basically setting the house to be sterilized and as best be, a 'hospital setting'. I called early to our special nurse, Lori, to get the scoop. She asked how I was and I said, very, very, happy and should I be? She said there were some issues to be worked out and we were waiting for doctor's orders. She told me she would call back with the 'update'. I organized gifts for the doctors, nurses and staff and thanks to Jennifer Olmstead, who delivered the candies and chocolates, each person received a note with the following, "Life is a box of chocolates, you never know what you will get." Thank God we got you, Love, Chase and family. THANKS TO Kendra and Kathleen for their quick response and printing efforts. I have been an emotional mess all day. I feel surreal in that Chase is home. We had to wait incessantly for the seven meds to be filled so Kathryn, my best friend, and Chase drove around Orange and bought illegal fireworks, while I waited at the hospital pharmacy to get his prescriptions. Chase came home, I left the house for an hour to let him acclimate to his renewed life at home. Dan Naughton made him a steak on the barbeque and with biscuits and corn, Chase ate a bit for the first time in a very long while. The doctors at CHOC have sent Chase home prematurely. With his low counts, he is extremely vulnerable to infection, organ failure, etc. Absolutely, without exception, no one can come to our house, nor be around Chase, Dad, Mom, Cody, other brothers who might be at all sick. Chase is at risk for anything at this point. He will go to the hospital this Saturday and Monday for blood products and Tuesday for a hospital/clinic review. Those are the facts, like a slide show, I hope you can tie everything together. However, on a deeper, emotional level...Let me tell you what joy I am feeling knowing that those pounding steps on the stairwell are from Chase running down to get a water bottle, the toilet flushing, because his kidneys are working, the dirty dishes in the sink from his steak dinner leftovers and the smile on his face when he finally gave me a hug when we got home...a mother's dream come true.
July 02, 2008
"I'm a complete mess"
You really have to watch this complete message.... The criticism prior to the performances, the lyrics, the genuineness of a child, the beauty in her voice and the absolute message in the end, take a five minute reprieve in your life and view in its entirety...xoxo,Kim
June 30, 2008
"A Day Soon To Come"
Chase's counts continue to rise daily. Dr. Keiroff advised Chase strongly to eat, walk (two times around the hospital in a mask at night), eat, walk and repeat. Without spiking a fever, or getting an infection, Chase may be released this Thursday.... CAN YOU BELIEVE OUR EXHILIRATION???? Last week, I truly thought we were at the lowest since first diagnosis, and today, we are facing possible discharge. God knows Chase needs to be at home and with all your prayers and faith, that day may be upon us. I am busy preparing the house for a homecoming to outstand any other. My next news will be the greatest I have yet been able to share...my son, Chase Donovan Crawford-Quickel is alive, at home and beginning to start his plan for a life without cancer. Defying all odds and the third time cancer, his will to live is profound.....I hope you do not hear from me until the next notification, Chase is home...quietly sleeping while I silently watch him breath from a much better vantage point and as a mother, this will be the very best day of my life...xoxo,Kim
June 29, 2008
"Independence Day"
I've hesitated writing because my last entry was a high for us and I seriously didn't want to put any negative spin on anything. Chase did continue to vomit blood through last Saturday. He has not eaten much whatsoever and I fear Monday, he will be back on that "TPN", liquid nourishment. In addition, Chase's pain meds have become addictive and Chase will be weaning off these meds. He can't go cold turkey as withdrawals would be adverse. Chase wants to come home and the doctor said maybe next week, as long as his counts continue to rise slowly as they have been. Chase has to eat, exercise, remain infection free and be drug free of the pain meds. Chase told the doctor today, he wants to be home by July fourth and Dr. Torno said, barring any of the previously mentioned difficulties, he may be released. July 4th may never be more glorious, and celebrated more grandly if, by God's will, Chase is at home 7-4-08...If by chance that happens, let's all make the grand finale, wherever you may be, a tribute to the fight of one young man's life, who represents the true definition of being set free and 'independent.' xoxo, Kim
June 26, 2008
"Something to talk about"
After daily visits to the hospital, I came home today with some optimism, even though this morning, Chase's nurse said yesterday's cat scan showed a collapsed lung and he is still in pain and very swollen, especially in the face and neck. Having said that, here's the good word; Chase's white count is now .6 rather than .2, his overall anc is 530, yesterday was 400 and before that 200. He got off the liquid food last night so now he is on the bone marrow diet which means no restaurant food, fruits or vegetables whatsoever, no reheated food either...basically home cooked only and can't lose temperature (so bacteria won't grow) and microwave foods are ok. The doctor said food is necessary to help the bone marrow thrive, as well as his organs and if he can't eat, Chase will go back on liquid food (TPN). There is a shake maker in the room, so any of you who are visiting, please pig out with Chase. Maybe you can tempt him with a homemade in the room Oreo shake... (Oreos, milk and vanilla ice cream). The bone marrow test results will be in next week. Dr. Neudorf asked a cardiologist to come in this evening to check Chase out and another cat scan was ordered to focus on the fluid in his neck and face. In addition, an incentide spirometer was added to the protocol and a central venus pressure test administered. A lot going on, so I asked our beloved, Dr. Neudorf, how are you feeling??? He smiled and said, "I'm thrilled..." So with that, I told him, if you are thrilled so am I and with that, let's call it a day...xoxo,Kim
June 24, 2008
"Abundant thanks"
Thanks to all of you for your cards and gifts to Chase for graduation. He will be writing his own personal thank you notes when he is feeling better. He has read each card gingerly and with great appreciation for your words of encouragement. There have also been gestures from others, like Lisa (Chase's original 'wish granter' from first time cancer, alveolar Rhabdomyosarcoma, 5 years ago) and her husband Steve, who came to the house, cleaned and fixed the tank, added supplies...all on their Sunday, day off!!!! What a sigh of relief! Today, I sat with Chase most of the day, he slept much of it. He got the bone marrow aspiration and the doctor got a good fluid sample. The preliminary results will be in within two to three days, with the final important info in within 7 days. In addition, although the vomiting blood has continued, Chase's counts went from .2 to .3... For many that seems minimal, but to the staff and ourselves, any rise is to be celebrated. Chase had his arm IV line removed today and 2 antibiotics were completed as well. Maybe, just maybe, cross our fingers and pray to God that his counts will start to double, his swollen face will come down, the breathing tube will be eliminated, the stomach sores will heal and the bone marrow test will show a dominant acceptance of our beloved 53 year old female donor from God knows where (must be a heaven on earth location)....I think, overall, tonight may be a special time for me to say once again, my abundant thanks for the gift of friends, family, neighbors, strangers, my patients who have been so kind, Lori Midtsatre who keeps this site so current, Ronda Robinson for her continued grocery stops and drives for Cody, the power of prayer and to all of you who spread the word to those who are believers and continue to pray, and of course to God, from whom all things are possible....xoxo,Kim
June 22, 2008
"In need of a reprieve"
I just got home from the hospital. Chase and I watched the Angels win which always brings some light into the day. Chase's condition remains serious and unfortunately, I do not have much good news. However, after throwing up darkened blood for the last week; thus far today, Chase hasn't vomited. He is on a breathing tube which comes and goes depending on the numbers. His counts remain low which is concerning. Last Friday, Chase had too much mouth bleeding to get the bone marrow test, obviously without the blood having the ability to coagulate, bone marrow aspiration was a no go. Hopefully, Monday, Dr. Neudorf will have the test administered and the results may take up to a week to decipher cells. Chase is very swollen and hopefully new meds will help with that. His ulcerated sores in his stomach continue to provide abdominal pain hence his need for the pain meds every 20 minutes. My deepest sadness rests with the fact that Chase needs to get out of the hospital. He needs to breathe fresh air, sleep in his own bed and enjoy the comforts of home. I fear that goal is far from being reachable at this time and I am actually starting to experience the depths of the grieving process. I get angry quickly and cry incessantly (of course not with Chase). I pray Chase's body will endure this incredibly traumatic process. With love, xoxo, Kim
June 20, 2008
"Reality check"
Our Angels are doing good things..... you have to know how much the Angels invest in their volunteerism at CHOC. Unbeknownst to me, two special Angels visited Chase recently and I thank you so very much for your efforts to inspire, encourage and influence our cancer inflicted children/young adults. In the meantime, Chase received an important drug today to aid in his immune system which will hopefully stop his body from rejecting the daily platelets that he is receiving. In addition, tomorrow morning, Chase will go under and get his bone marrow re-tested. Since the last test, 19% was Chase's cells, 29% last year's donor's and 51% this year's new donor's cells. They are all competing for their right to thrive and obviously, we are pulling for our 2008 donor to kick the other cells to the curb. By next Thursday, we will know the results of this important test. It is imperative the new donor's cells are multiplying and with Chase's current low counts there is concern in the air. Chase continues to tell everyone he is fine and I truly admire him for his continued optimism. I believe that Chase does not want anyone to be fearful, sad, or apprehensive when they talk or visit. I know how much Chase enjoyed watching live his graduating class yesterday, thank you Cox Cable. Dr. Salter, the principal at AVHS, Karen Everett, his counselor, and Ms. Wright, Chase's sociology teacher, came today to present Chase with his diploma. The LA Times writer and photographer were present and Chase remained shy and reserved. He held the tassle but refused the cap and gown. When Dr. Salter said his rendition of the ceremony and testimony to Chase about his diploma, I felt so very emotional. Fortunately, I sat behind Chase and he missed the tears rolling down my face. As I peered over at Dan, there wasn't a question that he felt the same....whoever said men don't cry.....Anyway, there is so much I'd like to add but for today, I bid everyone good night and hope we may rest peacefully....xoxo (Angels visitors were Joe Saunders and Mike Butcher)....
June 17, 2008
"A day to remember"
Today, I entered room 308 with a lot of reflection in my heart, Graduation Day. I remember those days at Bergeson when Chase entered kindergarten and many of these young adults have been together as families, friends, and classmates since that very day so long ago. Tomorrow, Chase will watch his classmates congregate and walk through their graduation with pride and adoration of their accomplishments and their future (via teleconferencing) at the exact time of graduation. Chase agreed to let public relations at CHOC announce this new technological advance, without using his name, so that others at Choc who are sick may feel more a part of their graduating class by doing the same. Chase will not allow Dan nor I to be present during the viewing and instead, will have his girlfriend Kelsey by his side. Maybe a good choice, as I know I will cry for the entire ceremony and would have either had to remove myself from Chase's room the entire time, or expose him to a much despised emotional state. In the meantime, Here's the update: Chase had been vomiting blood and the doctor's believe the cause is due to his platelets being low, his counts remain at an all time low, he's experiencing a severe headache which hopefully the pain meds are helping. Last night, he received a breathing apparatus to assist in his breathing. The kidneys and liver are struggling to process all the blood products so Chase remains swollen. Chase seems so positive and when he gets your calls and visits I remain in awe of his stamina. Who would ever think your child would out stand your will to live, persevere and remain so very much in control of 'His Plan'.... I commend all of you in the class of 2008... May your futures be bright and your adventures bountiful... xoxo,Kim
Dear Chase, Today is a perfect day for you to feel so proud of your accomplishments. Not one graduate deserves this day more than you. The strength that you continue to endure has touched not only your family and friends but your classmates as well. So today, the class of 2008 will walk behind you as you celebrate this great milestone of your journey. You are truly a hero Chase to everyone …Congratulations!!! We pray for you everyday for health, happiness, and peace.
June 14, 2008
"Special request"
Chase has been needing blood products daily. To all who donate, not only for Chase, but for others, the hospital is in dire need of blood. They have been out of platelets so Chase has to wait until the red cross gets some in, hopefully by the day's end. Again, blood is the source of renewed life for so many, keep giving...especially platelets. No blood is wasted!!!xoxo,Kim
(714) 532-8339
CHOC Blood Donor Program
505 S. Main St. Suite 185
Orange, Ca, 92868
(across the street from CHOC - Corner of Main and La Veta)
June 12, 2008
"Thanks for today"
I really amazed myself today as I sat at work, staying focused and able to concentrate. What you may not have known was in your best interest. Yesterday, out of concern as to why Chase's counts are remaining stagnant at zero, the doctors put Chase under sedation to aspirate some bone marrow . For 24 hours, I have been in an internal state of fear and apprehension. Although, Chase remains on top of the game, his current vomiting has only added to my intense concerns. At 2:56 pm, I called AGAIN to see if the results were in. The results showed precursor cells of his donor, which is great news. That means her cells may be starting to multiply and will hopefully take over Chase's body with tenacity. In addition, the oncologist's decision not to remove the broviac by trying another antibiotic may be working...The cultures were negative today which may mean no removal of the device!!!! Glory Hallelujah!!!!!!!!! Chase is sleeping a lot these days, no calls or text before twelve pm, and any visitors need to check with him directly as to get his permission; you know he doesn't want any pity parties and he has been sick lately. Next week, the doctors will recheck the bone marrow to hopefully see increased improvement. For today, I will privately say my prayers with an added note of gratitude for this day. In addition, I will scream a little louder for our Lakers because behind my voice is an energy worth releasing. With love, xoxo,Kim
June 10, 2008
"Chase"
Chase was given a new antibiotic yesterday so the oncologist is going to give it a couple days to see if Chase can fight this line bug. The infectious disease doctor just left the hospital room and she feels assured that the broviac line will have to be removed. We just need the counts to come up. In the meantime, Chase has a peripheral line placed in his hand. He is receiving a lot of blood today, several antibiotics, as well as the other meds and nutritional supplements. Our visit is very quiet today as there is a somber tone to this day. xoxo,Kim
June 09, 2008
"Prayer and the power of optimism "
Everyday, Chase awakes and faces the new day. It begins early and ends late, with the multitude of interruptions from the staff who check his vitals, draw his blood and administer various treatments. Tonight my update has me tearful. Chase has been sick tonight and his vomiting occurs without particular reason. Tomorrow, Chase will undergo surgery. Although his counts are still at zero, one of the bacterial infections has been diagnosed as a line infection which requires immediate removal and then replacement of a new broviac. The skin has grown around the broviac so the surgery will be more invasive and require a more extensive procedure into the tunnel of his chest. A new antibiotic was added to his treatment protocol and I am so saddened by this added burden to Chase's current situation. With the counts staying stagnant at zero, next week, Chase will get a bone marrow check to determine if the leukemia is the cause and/or if the stem cell transplant is doing its job to overtake Chase's blood. Chase lost his eyelashes a few days ago and I find myself starring at him while he rests. It takes me back to those years when he was a baby, sleeping peacefully...when a parent looks at the miracle of birth, the essence of unconditional love, never knowing what may become of their future. The innocence of our youth is surely missed tonight.....We will all stand in adoration of Chase's strong will to live and pray for his longevity. xoxo, Kim
June 07, 2008
"Weekend update"
I am sitting in the 'Hope Room' while Chase is taking his bath. He has been throwing up while watching the baseball game on T.V. Currently, Chase has two infections going on and his counts are still at zero. He will start today to get an injection which, hopefully, will jump start his counts. The Skakun family has made special arrangements for Chase to be able to watch the graduation ceremony from his hospital television. I am pleased that he will be able to be part of it, even though not physically present. Kyle leaves tomorrow and I will surely miss his presence as well as his time spent with Chase. There is something very special to all of you who have visited Chase. The lesion is getting better and for that I am grateful. May you all enjoy your weekend. xoxo,Kim
June 02, 2008
"Graduation"
Today the grad announcements were printed. Chase will not walk with his class, but will be the recipient of his diploma from Aliso Niguel High School, class of 2008. We will celebrate in private on June 18th and wait until later this summer for a big hoopla. As far as Chase's health goes, his rash has diminished which means that at the present time, he does not have graft vs. host disease. The lesion remains the same and his counts still are zero. He hasn't been able to eat, but the liquid nourishment is sustaining him. I am daily so proud of Chase. He so does not want to be in the limelight and yet he is such strength for many. If anyone out there is looking to help and has a keen knowledge of fish and aquariums, I am desperately seeking assistance. Feel free to call any time; I want to reimburse anyone for their time. I want Chase to know his fish are in tip top shape for his homecoming. Thanks xoxo, Kim
May 28, 2008
"Another Angel on the unit"
Chase received a visit from Rob Quinlan from the Angels. They had a nice chat and the visit meant a lot especially as Chase hasn't been feeling well. The days seem to drag into the next as we await his counts to change. He is sleeping more and I am sure the explanation is partially from the pain meds coupled with the low counts. In addition, we have to remember what his body has been through accumulatively. I will remain a quiet cheerleader in room 308, waiting eagerly for better days ahead. Chase is on several medications to hopefully prevent the lesion from becoming a more serious infection which could spread through the bloodstream or/and become a staff infection. I'll keep everyone informed as to any changes whatsoever. I couldn't help kid Rob Quinlan about being in a good mood, after last night's game. Way to go Angels!!! xoxo,Kim
May 26, 2008
"Memorial Day"
Tonight, as I drove to Choc, I was pleased to see the freeway traffic light and arrived to see Chase wrapped in his favorite blanket sleeping peacefully. He has been receiving blood products daily and we certainly appreciate all of you who donate blood, keep it coming!! The nurses come in quite frequently and as I asked my entourage of questions, I was told that Chase hadn't pushed his pain medication button for two hours. I see him in his weakened state and mourn for this whole process. I again feel the wave of depression set in as I watch this incredible strong soul experience what is to be a long haul. Amazingly, Chase awakes so we can watch the Angels play and he quietly views his team in action. What I wouldn't do to be there eating a hotdog with him at this game. One day, someday, perhaps. For all of you who came to El Cortez, thanks from the Leukemia Society for your support. The weekend passed all too quickly and I managed to have some really hysterical times with my gal pals in San Diego, and by the way, I am still in my forties!!! They dressed me up like a fool, but we'll save those stories for another time. It sure felt good to laugh and kick up our heels. Love to all, xoxo,Kim
May 23, 2008
"Quick update"
To all our "people", Chase has had no fever for the last three days. The lesion had been so painful that Chase did finally accept the pain meds and also, has the liquid food pumping through his broviac. Today, he is better. Kelsey was the queen yesterday in her Senior performance dancing up a storm. My only regret, not having Chase by my side to see his angel in such beautiful form. I am taking a reprieve for 24 hours with my gal pals(pre b-day celebration) and we are taking the train to San Diego to cause some trouble. I know it will be an adventure and hopefully I'll have some pictures to prove it. I will spend the day at CHOC today with Chase and anticipate it being a quiet day without drama. My love to all of you. Happy Memorial weekend. See you at El Cortez this Sunday for the fundraising event for leukemia and lymphoma, starts at five. xoxo,Kim
May 21, 2008
"God Bless Chase and El Cortez"
Chase is sick with a painful lesion, low counts and discomfort. I am having a difficult time watching him in his current state but pray again for the clouds to disperse. In addition, Chase started the liquid food tonight, because obviously, he has got to get the nutrition in... xoxo,Kim
On May 25th, El Cortez Mexican restaurant will be donating all bar proceeds to the Leukemia and Lymphoma Society starting at 5 pm until closing. The address is 28971 Street of the Golden Lantern, on the corner of Crown Valley and Moulton/Golden Lantern. There will be a raffle and boutique style gifts. Call for details or donations for the raffle, Molly or Gina at 949-495-4808.Any cause for cancer is a good one and the great food is an extra plus at El Cortez. xoxo,Kim
Never Give Up Hope...
Hope is such a marvelous thing.
It bends, it twists, it sometimes hides,
but rarely does it break.
Hope sustains us when nothing else can.
It gives us reason to continue
and the courage to move ahead
when we tell ourselves
we'd rather give in.
Hope puts smiles on our faces
when our hearts cannot manage.
Hope puts our feet on the path
when our eyes cannot see it.
Hope moves us to act when our souls
are confused by the direction.
Hope is a wonderful thing,
something to be cherished and nurtured,
and something that will
refresh us in return.
It can be found in each of us,
and it can bring light into
the darkest places.
May 19, 2008
"To be expected"
After a pleasant weekend, Chase remained strong. Chuck bought a hand mixer and that with Ben and Jerry's, milk and oreos, Chase truly enjoyed the perfect snack. Currently, Chase has a fever, chills and discomfort. Kyle and I knew the minute we walked in room 308, he wasn't feeling well. He was willing to try some microwave mac and cheese but by the time I returned from the store, his interest in eating had faded. My moods have been erratic. Friday, after the stem cell transplant, I was over the top. Tonight, I feel somber and saddened by his condition. I will look at this as a set back and nothing more. Tomorrow, may Chase receive a change in weather, let the sunshine bring him relief. xoxo, Kim
May 18, 2008
"A letter to the stem cell donor"
Dear Giver of Life, I am finding it difficult to muster up the words to share the enormity of the amount of gratitude I have for you and your 'gift of life.' Internationally, you were our only suitable match and Chase's life has been hanging on for your stem cell donation. You gave over and beyond to give Chase the best shot he has for life. When I saw the team surrounding your blood in that cooler, it took me to my knees. As it pumped through his body, I had the room of witnesses pray thanks to you and God. As people hear Chase's story, more and more donors are volunteering. It has been a miracle and although we are far from out of the woods, there would have been absolutely no chance for survival. Chase remains strong and committed to being optimistic and fight this fight. You are both warriors and it is with the utmost gratitude, we thank you from the depths of our souls. Sincerely, with love and adoration, Kim, Chase and family. P.S. Although I realize that for the next year you will remain anonymous, I pray for that day to come when you and Chase will meet to celebrate Chase's new life without cancer, one which would not be possible without your huge random act of kindness.
May 16, 2008
"Life extension"
Today is the first day of the rest of Chase's life. At 12:18 today, Chase received the donor's stem cells. These "super" cells ran for under 10 minutes and other than a heat flash reaction, Chase was ready for a new life without leukemia by 12:26pm. Amazing!!!! Chase has not been able to eat, so the doctor is giving him three days to get in the nutritional daily requirements. Otherwise, Chase will go on either liquid food or get a gastrointestinal tube implanted. The nutritional component is extremely important so that Chase's body has the best chance to have the transplant be successful. The room was filled with emotion. There were 2 nurses present as well as the two doctors, a lab technician, the blood donor coordinator, the La Times reporter, Kyle, dad (Texas dad) and me. Kyle and I arrived at Choc and shared the elevator with the 2 doctors who had just been called to say, we're ready for transplant. When we got off the elevator, I immediately welled up with tears as I saw the team standing protectively around a cooler holding the b positive stem cells. It was frankly one of the most glorious moments of my life. I am still shaking from this moment. Of course, Chase hated all the attention which was focused on him. I happen to believe that even Chase was deep inside as hopeful and excited even if outwardly he remained quiet and in control of his emotions. Forget being a rock, I am going to cry all day, tears of joy, hope and faith. I did request everyone in the room to bow their heads for a prayer with thanks to God and the donor. Please join us today in that prayer. xoxo,Kim
May 14, 2008
"One more day to gear up"
Chase is nauseous today but managed to have his last photo shoot with the LA Times photographer. Boy does he certainly hate being in the lime light! Chase will receive his stem cell transplant on Friday at noon. The donor has agreed to give extra cells and she will require two days of collection. That is good news for us because Chase will get one more day to feel better after this harsh chemo. In addition, even though he isn't eating at all now, maybe tomorrow, he will be up for having a food feast before his dietary restrictions come into play. I feel relieved as we wait for the miracle of new life to begin Friday. Your prayers are sustaining the family. With love and thanks .xoxo,Kim
May 13, 2008
"LIVESTRONG - A day for Lance Armstrong and all survivors, May 13"
Chase received his last dose of cytoxin today. Dan and Chase sat alone awaiting the repercussions. Chase got sick again and refused any meds. The nurse begged me to convince him of the benefits but it fell on deaf ears. Dr. Sender came to evaluate Chase and gave the facts very gently but without censorship. He told Chase he may die. Chase's response, "I know." Reminds me of first time cancer, when we found out he had alveolar rhabdomyosarcoma and his first words were, "I am not afraid." Then, last March, when the diagnosis was acute myelogenous leukemia and his attitude, again, was like "okay", without drama or investment in what was in store for him. Thursday will be the beginning of new life, with the stem cell transplant. Tonight, Chase showered, changed and put on his aftershave. He perked himself up while awaiting a visit from our angel, Kelsey. They have a bond and connection like no other. Kyle and I were quite aware that our presence was not required. As we drove home, not a word passed between us. It is a time of introspection and focus on the days ahead. Chase remains strong in his diligence and we all should follow suit. xoxo,Kim
May 12, 2008
"PRAY PRAY PRAY PLEASE"
Chase had a great day with Kyle, the photographer and myself. The cytoxin went in at 2 and by 5 he has been horribly sick. I am so devastated that the horrid beginning is here. He is on an every 20 minute pain pump and I fear, the good times are over. I'll keep you posted... With fear and sadness, With love , xoxo Kim
May 11, 2008
"The poem"
I just took a break from the family to step outside and breath. Chase has had no pain or nausea thus far. We are watching the Angels and of course, my new favorite player, Justin Speier. I have truly received the greatest gift today, to have us all together, the boys are rough housing, there is laughter in the room and we are relaxed. Chase has had a good appetite and is outwardly doing really good. The harder chemo, cytoxin will run for three days starting tomorrow. I am not going to allow this Mother's Day to be overshadowed by the upcoming days. We will take one day at a time. Again, to all the mothers in the world, let us be appreciative of the lives we impact, the lessons we teach and the love we give unconditionally. xoxo,Kim
Never Give Up Hope...
Hope is such a marvelous thing.
It bends, it twists, it sometimes hides,
but rarely does it break.
Hope sustains us when nothing else can.
It gives us reason to continue
and the courage to move ahead
when we tell ourselves
we'd rather give in.
Hope puts smiles on our faces
when our hearts cannot manage.
Hope puts our feet on the path
when our eyes cannot see it.
Hope moves us to act when our souls
are confused by the direction.
Hope is a wonderful thing,
something to be cherished and nurtured,
and something that will
refresh us in return.
It can be found in each of us,
and it can bring light into
the darkest places.
May 09, 2008
"Heads up"
Please sign the initiative by Dr. Sender, www.seventyk.org and be watching the LA Times in the upcoming few weeks for a feature article in regards to Chase and the importance of the bone marrow donor program. Chase had a good night last night, even though he got little sleep. Happy Mother's Day to everyone, may you have a day surrounded by your loved ones. xoxo,Kim
May 08, 2008
"So far so good"
Chase received his first chemo this morning at 6:08 am. He slept through the two hour treatment. At twelve, Chase received his second dosage and Kyle, the news reporter and photographer from the L.A. Times and myself were here at CHOC to witness the chemo. Chase was light headed but otherwise alert and relaxed. He was given zophran for nausea and is consistently receiving iv fluids for hydration. I have prayed for a day without drama and thus far, it has been very relaxed and noneventful. The room is the very best and was reserved for Chase. He certainly earned this 'suite', room 308, and it is very comfortable with its spaciousness and privacy including his own bathroom. Thank you God for this day. I know this may be the calm before the storm but I have such gratitude for the moment. On a sad note, I ran into a familiar mom in the hallway. Her son has relapsed with Hodgkin's, sixth time cancer. He is terminal and his departure imminent. I hugged his mom and we wept together. I have such fond memories of her from four years ago when our boys shared a hospital room and we both shared our greatest fears to each other. On that note, I will say good night and wish all of you peaceful sleep, and at the top of my list is Chase. xoxo,Kim
May 05, 2008
"Stop time"
If we had the power to slow down the moment, that would be my wish for today. Our meeting with Dr. Neudorf and Carla , the bone marrow coordinator, was extremely informative. Chase will be admitted this Wednesday at 3 pm. He will receive blood transfusions if needed. At 6 am, the rigorous regiment of chemo will begin. He will get mouth sores and be ill. There will be daily monitoring to determine whether the toxicity is too strong and adjustments will follow. After 8 days of this harsh chemo, Chase will receive stem cell transplant from a 53 year old female who remains anonymous. During the first 90 days, the concerns are triple fold: one is adverse reactions to the chemo, meaning heart or liver failure, secondly, infections, and thirdly, graft vs. host disease. Our medical team feel it would be advantageous if Chase got a slight gvh disease but that will remain to be seen. Chase had several questions as to what is to come and I felt so proud of his calmness and matter of fact disposition. The doctor only once had to hand me the box of kleenex and Chase glared at me with that nonverbal reminder to stay positive. If he had not been in the room, I would have cried the entire meeting so give me a little credit, please. Chase will fish tomorrow with our family friend, George Deyoung and last night Brett Mimm arranged for Chase, Kelsey,Blake and Chris to go out in Newport on a duffy boat. Kyle came home Saturday and made us all the worst cheeseburgers we've ever had. We attended church as a family and celebrated Grandma Sue's 71st birthday. For the time being, we are a 'normal' family living life. Tonight, Chase will have friends over and has asked for me to let him have the house alone. I will find a place to hang my hat knowing Chase is experiencing the next to last night at home. I have such a plethora of emotions and I can only ask again to pray for my young man who loves to fish...xoxo,Kim
May 01, 2008
"Go Angels!!!"
On the way home from CHOC, after I screamed out loud upon hitting the exit doors, we stopped to buy 2 beautiful fish for Chase's aquarium. He is currently fanatically cleaning and making it a better home for the fish. He is already getting things in order. At 4:30 pm today, a limo will pick up Chase, and his three best friends to attend the Angels game first class compliments of Dave and Christy. Can you believe they pulled it off at the 9th hour??? I am over the top!!! I'll again say these highs and lows are definitely the ride of our lives. My house will again be busy and my heart full, for at this very moment, I feel so very blessed. xoxo,Kim
"Hallelujah!!!"
Chase is being discharged at 11:29 today!!!
"Gear up"
During the last couple days, Chase has remained very quiet and solemn. He wouldn't allow me to bring essential items because I believe he refused to think he would remain in the hospital. I felt out of my skin watching him scratch incessantly as the rash progressed all over his body. With this high fever and disturbing rash, I found myself, again, questioning why Chase??? Why now, why again and how much can a person take? We may never know those answers but let us settle our souls on the following: Chase has the perseverance of a saint, he takes each day as it comes. Chase wants no pity party and absolutely is going to do whatever it takes to make this life be what it may. Chase continues to plan on graduating with his class and attending Santa Barbara City College in the fall. We will order his cap, gown and diploma and whether that graduation occurs at Aliso Niguel High School or on the grounds of Choc Hospital, be assured people will come.... I am so lonely tonight as the house is quietly awaiting a renewal of life. To have my boys home, together before Chase starts the hard chemo. Kyle, my oldest, moves home this Saturday on a one month leave of absence from work in San Francisco, Corey ,in South Africa will return sometime in July after completing his Junior year abroad. Cody, the youngest, at 15, has been distant and all too very busy socially. I believe this is a distraction and hopefully short lived. This whole process is taking it's toll, I feel sometimes like I am eighty... On a positive note, Chase did not spike a fever last night and if he can go 2 more nights, he will be able to come home before hard chemo on May 7, 2008. More later, I am drained... xoxo,Kim
April 28, 2008
"Chase"
Chase had an incredible week at home including a very successful fishing trip to Catalina. It has felt so nice to have him home. Unfotunately, last night at 11pm Chase informed me he had a 103.8 degree fever. I called ER and we were at St. Joseph's for 6 1/2 hours. Finally, at 6am, Chase was admitted to CHOC OICU room 309 - that dreadful room without a bathroom or doors. He has a bad rash but the fever has decreased. We should know more in the next couple of days. Chase refuses to believe this is a long stay. He wants home ASAP before being readmitted on May 7th. Your love, prayers and support are like the air that we breathe. xoxo, Kim
April 22, 2008
"Divine Intervention"
Chase's donor has been accepted. His blood counts are low but reasonable. Graft vs. host disease is most unlikely due to the fact that the rash has certain areas of exposure and that it is getting better. Chase will enjoy a reprieve until May 7th and will remain at home. He will fish, go to an Angels game and live life to the fullest. On May 7th he will be readmitted to CHOC oncology ICU and receive 8 days of hard chemo. On Day 9, the bone marrow transplant will take place. Until then, we will enjoy one day at a time. Thanks be to God. xoxo, Kim
April 18, 2008
" The 'wow' effect "
There is no news on the graft vs. host disease because the skin biopsy was inconclusive. In addition, no word on the new donor being viable. However, I am about to leave with my son to go home. The rash is better and I am literally having the high of my life. Chase is so happy and I haven't seen him smile more or laugh more in what feels like an eternity. Just now, Justin Speier from the Angels came into room 325 to meet Chase. We got pictures and he kidded Chase for not picking him for his team on the Playstation 3 game. He gave Chase a vip card to come to a game with guests and go to the duggout. Oh my goodness, the adrenaline and optimism in our hearts right now...T he best day, thus far in my life... More later, got to enjoy this rush of pure relief from this illness. Keep the prayers going for Chase... xoxo,Kim
April 17, 2008
"Chase's beginning"
I am feeling a bit nostalgic and thought I'd share a bit of mind time with you. Chase was supposed to be born on 12-25-89. Neither the doctor nor I really wanted to be at the hospital on Christmas day, and at the time, I believe Chase would have agreed. Therefore, Chase was induced on 12-20-89 and came into this world calm, reserved and basically, the perfect baby. Adolescence would prove otherwise, however. Chase went everywhere with me; he adapted to all; he was content sitting in a baby chair for long moments of time, eating, throwing food over the walls and basically happy in a zone of comfort. I feel this is very reminiscent of his time now at CHOC. Notwithstanding, the baby girl, who never gets a family visit, who screams everyday in her crib next door to Chase's room has again shown me how Chase withstands so very much without a mention of a gripe. Today and yesterday, he changed. There was a flyer placed at the high school indicating Chase was ill and needed prayer and hope. We are so very grateful for that benevolent effort, however, Chase felt mortified by the attention and does not want anyone to feel 'sorry' for him. He continues to believe in his longevity and obviously, tomorrow's news is monumental. The stress in our world is at an all time high. Let us all enjoy the quiet. Thanks to everyone for your honest attempts to make this dream come true.... For tonight, I will send a prayer for so many things, I feel a bit selfish for asking for so much but I do this without regret. xoxo,Kim
April 16, 2008
"Dark skies"
Chase has had a bad rash going on five days. His platelets have remained at an all time low. His chemo has been postponed for two weeks. The past chemo has just wiped him out and it is taking it's toll on his body. Numerous tests were taken yesterday and we will know the results this Friday. We will also find out if the new donor is a viable candidate. The donor is available for the delay. Edna, the bone marrow coordinator examined Chase's 'rash' yesterday and she feels it may be graft vs. host disease. If that is true, Chase will not be able to have a bone marrow transfer. Please no house calls at this time. I am just not feeling good right now and it is becoming more difficult to be on top of my game. I love all of you and let's pull together a marathon of prayers for Chase's survival. xoxo,Kim
April 11, 2008
"More prayers needed"
I finally slept last night without the disruptive, worrisome thoughts, what a blessing. Unfortunately, after my discussion today with Edna, head of bone marrow transplant unit, I feel troubled.
First of all, the bone marrow donor will go to his/her hospital next Monday and Tuesday for further tests to verify if, indeed, he/she is still a viable candidate for donorship.
Secondly, Chase's counts have consistently remained very low. They must come up in order for him to do the 8 days of hard chemo which must begin on 4-21. The donor transfer is only available on 4-30, otherwise we lose our one and only donor thus far available.
There is additional concern over whether Chase's heart will tolerate the chemo and that will unfold the week after chemo has ended. Chase has also been informed that due to the urgency of all these dates, he may not be able to come home prior to treatment. One day at a time...xoxo,Kim
P.S. Edna is not able to respond to the multitude of calls from all the people who want to be donors. For Chase, it is too late due to the time constraints. However, if you are still interested and marrow donorship does save lives, call 1-800marrow2 or Click Here to go to their website.
April 10, 2008
"A Day To Celebrate In A Huge Way "
Thanks be to God and the power of prayer. Chase received the news late today that the only donor left, literally in the world, who is a nine out of ten match has accepted being his bone marrow donor. My heart is soaring tonight and my spirits lifted. I feel completely full of gratitude. I truly believe Chase is a miracle still unfolding.
So here's the 'plan', get his blood counts up, as they are still very, very low. Chase will then get to come home for a couple days, hopefully in a week or so. Hard chemo for ten days is scheduled for April 20th, then bone marrow transplant on 4-30. Begin a new life May 1st, May Day... how perfect.
May my exhilaration be contagious, as well hope rekindled and my love to all of you, especially Chase, be profoundly abundant.
P.S. Call me greedy, but my dear friend and colleague, Carlene, also has third time cancer. They discovered a new tumor in her stomach. She will have a cat scan tomorrow. God, please let it be benign. Prayers are greatly welcomed....xoxo,Kim
April 09, 2008
"Faith"
Yesterday, we found out that Chase's prior bone marrow donor is no longer available for an additional bone marrow transfer. We are waiting for the only other international candidate to respond with, God willing, an affirmative response. Today, I will let Chase know this most recent "news". I am confident he will receive the news with his typical response, optimism, hope and inner strength. Today I am filled with tearfulness, fear and the pressure to model Chase and his attitude, no whimps for the weary, I will remember Chase's diligence in this process and continue to pray everyday for his longevity. May you all be acknowledged for your visits, prayers and support in so many ways....xoxo,Kim
April 08, 2008
"A dying plant, a living soul"
Although, Chase remains on top of this challenge, he continues to have a nightly fever. In addition, Chase had blood in his urine, a urinary tract infection and significant weight loss. Last night Chase was moved to room 325 out of OICU to the general oncology floor.
As I got ready for bed last night after my visit with Chase, I stared into the only living plant in my house. It is deprived of attention and dry to the roots. However, the leaves are green and abundant despite the neglect.... reminds me of Chase... strong to the core regardless of the seemingly ominous appearance.
The cruise was pleasant, 13 kids who bonded in our inner circle of families. My heart was heavy over the only missing child, my Chase, who would have made it 14 kids. My personal prayer; Dear God, grant our family the privilege one day to have all four brothers travel together, on a cruise, and celebrate life to the fullest with the air and the ocean as our backdrop. xoxo, Kim.
April 03, 2008
"Another day, another time, another cruise..."
I wonder to myself if along the shuffle of everyday life, whether I have told my four sons sufficiently how very proud I am of them and how cherished, loved and appreciated they are to me. Obviously, with Chase's diagnosis, I find myself more introspective about quality of life issues. I hope all of you daily affirm to your loved ones the gratitude you experience with them in your life. Don't take for granted a moment of time.... Chase has continued to be feverish at night. His appetite has dwindled to nothing. He is losing weight and with his counts so low, his energy level is minimal. The recent visits seem to temporarily distract him from the current situation. Cody and I were supposed to go on a three day cruise tomorrow. When I told him yesterday that Cody and I would not be going, he was appalled. He demanded an explanation. I told him with tears that I couldn't stand being away from him for three days. He got very angry and told me he was fine and that we should go without him. I apologized for my tears and tried to agree with him but reiterating my not wanting to be away. He said tenaciously, "Mom, I am going to be okay..." I guess I got my answer... Cody and I will go without him for three days. He seems to want us to know not only to proceed with life but with the knowledge he will be here Monday when we return. Chase remains strong in his belief of conquering this beast of a cancer. We do not have a donor yet the clock is ticking. Chase had chest pains and difficulty breathing but fortunately, the ekg and echocardiogram results were fine. If all goes well and Chase's counts rise, within the next two weeks or so, Chase will get to come home for a couple days. He will then re-admit for the hardest chemo thus far. Then, God willing, Chase will receive another bone marrow transplant. This upcoming month is monumental. With love in my heart for all your support, xoxo,Kim
March 31, 2008
"Chase"
Chase has been sick with a fever of 103. I consider this serious. He is on two major antibiotics and thus responding without results. In addition, Chase's hair is gone. Yesterday he requested his head shavers. I felt immediately depressed, yet knowing this is inevitable. When the nurses told him that his counts were too low for shaving, he took his fist and immediately removed a handful of hair. At that moment his OICU nurse said, "Ok, we'll shave you". When I walked in the room, I saw my boy, who is a man, shaven and bald in certain odd spots.. my heart sunk. Today is the beginning of a new episode of Chase's life.. and it is with that I again ask for your prayers. xoxo, Kim.
March 26, 2008
"Belated update"
I have kept waiting for maybe a sign or some type of news that would make us all sigh with a bit of relief. Basically, Chase had the fever for two nights. Although the blood cultures returned without infection, the antibiotics are continuing due to concerns over what a bacterial infection would do to Chase. Chase's counts have bottomed out and he is currently receiving daily blood products. Chase doesn't even know the angels who have donated their time, blood and efforts to provide him with their blood. I thank all of you who have either knowingly or anonymously given this gift of life. It is pumping through my son's body as we speak. Please contact Chase directly for visits, I know how much he enjoys your texting and contact. It gets a little stir crazy in room 301. I have personally experienced some very depressive moments but feel so compelled to take the high road when I watch, see, and experience the strength of my son, Chase. His uncanny knowledge of every aspect of his current treatment, as well as his coping mechanisms are extremely helpful for faith and optimism. I remain under Chase's spell, I will take each day as a gift and pray for the day Chase will fish again somewhere, someday in a quiet little place without cancer. xoxo,Kim
March 23, 2008
"Chase"
Happy Easter! Chase spiked a fever last night, has a sore throat and eye irritation. He is on pain meds and antibiotics. The blood cultures will show either an infection or as the Doctor believes, a reaction to the chemo. We had Easter breakfast at his bedside with the family after attending church. On a funny note, Cody snored during the sermon. Still praying for a new life and a miracle. xoxo, Kim
March 20, 2008
"Clarification"
Last night, I received a disturbing phone call from Edna, the bone marrow coordinator. She explained to me that a couple different issues are being considered amongst the treatment team. The first priority is to see whether in the next couple weeks Chase survives the chemo therapy he just received. He did so well during the actual infusions but only time will tell. Given the hopes Chase continues to be okay, then Chase will face a second round of hard chemo before being able to get either a stem cell transfer or another bone marrow transplant. The last donor is being considered and has been contacted to see if she is available in the next 30 days. We are still searching for perhaps a new donor but as of yet, no such luck. The doctors feel we need to focus on the immediate situation first, that being, will Chase survive the chemo he just received. Kyle will be here any minute so need to sign off. More info to come later. With Love, xoxo,Kim
March 19, 2008
"On the seventh day"
Chase completed his chemotherapy treatment last night. He has remained strong, confident and without any major repercussions. The next step is to have this chemo kill the leukemia and within 40 days, get a bone marrow transplant. It will then be determined whether Chase will receive additional chemo. Chase will be in room 301 for the duration, feel free to contact him directly if you'd like to visit. I have begun to allow myself to believe again that Chase may survive third time cancer. I will follow Chase's example, pray for a NEW LIFE without cancer, which seems appropriate at this Easter season. The fact that Chase, thus far, has not experienced diarrhea, vomiting nor liver or heart failure is truly a testimony of the power of prayer. Today, I silently send gratitude to God and all of you who care so deeply for my son. Please add to your prayers, my friend Tom who died Sunday night in a motorcycle accident as well as for an angel who today underwent foot surgery for removal of cancer. This 'angel' has undergone numerous other painful, challenging prior surgeries. God bless all of you. xoxo,Kim
March 16, 2008
"Inpatient update"
We got to Choc on Friday March 14,2008. On the way to the hospital, there was much silence. I told Chase I loved him and I asked him if he believed in God. Once he affirmed my question, we both fell into that quiet zone which was difficult. As I registered Chase, the administrator asked if we would be here for a day. Chase responded that he would be here a bit longer than that. What an understatement.... I have to admit Friday really was one of my lowest moments in my life and I can't even imagine what my son must have been feeling. I pressed that 3rd floor button on the elevator with the inevitable doom and gloom that everyone else shared as we arrived on oicu. The staff were all too familiar as they warmly received Chase and commented on his strong build and dark hair. Chase received platelets, by the way, thank you for all your blood products, and then was sedated to get the lumbar procedure as well as chemo directly to the spine. His spine is free from leukemia which is the first break we have received since this all began. We were assigned a horrible room with no doors or restroom. Today we will move to a much more private room, #304 and Chase is thrilled. Chase has thus far, tolerated the chemo and no vomiting whatsoever. Thank you God. I saw a woman in the oicu hall who's son was here a year ago with Chase. The team of doctors and the charge nurse were having a 'last rites' kind of meeting and as I walked by, I felt compelled to give her a hug." Love makes your soul crawl from it's hiding place..." Tuesday is Chase's last chemo treatment. Let the healing begin without complication....xoxo,Kim
March 13, 2008
"Fortune Cookies"
Yesterday, my fortune cookie read, "Great thoughts come from your heart"...tonight my cookie read, "You will win success in whatever you adopt." My 'adoption' plan is for the success of Chase's longevity here on earth. Tomorrow I will stand tall with my son as he is admitted to the third floor oncology. I will be brave and try to emulate Chase's optimism. I absolutely loved when Chase reminded me to call Orange Unified School District to keep him enrolled while he is in the hospital on the hopes he will still graduate with his Senior class at Aliso. Can you even begin to imagine that day???? Today has been my ultimate low, as I know many of you may be feeling the same, know that your love has been the foundation for hope. I am doing my last load of laundry tonight, preparing the house for absenteeism, gathering together the numerous items to move into Choc, relishing the idea of one more night at home for Chase to sleep in his bed. Enough said for tonight, I feel a little short on words....xoxo,Kim
"One day at a time"
Chase did not make it in the research study. He will be admitted to oicu at CHOC on Friday at 12:30. The chemo will begin tomorrow and if tolerated will run for 4 days. Your prayers are so very much appreciated. With love, Kim and Dan
March 12, 2008
"Chase"
At the end of the day, when the house is quiet, I find myself reflecting deeply on what is on the horizon. Before I can go there, I feel compelled to let all of you who care to get the update. So, here goes....Chase was admitted to CHOC on Monday for blood transfusions. Tuesday, he went into surgery to implant his broviac line. Tuesday evening, Chase was released to come home because the doctors have decided to have Chase join an experimental drug supplement to chemo and Chase can not receive this treatment if he has already started chemo. The doctors thought "Let Chase go home and fish." My vote precisely. The chances of Chase being accepted to this research study are slim and the possibility it will add to his longevity very limited. Since we are looking for that miracle, Chase is willing to give it a shot. So, we will prolong chemo until we find out if Chase is a candidate for the experimental drug and chemo will either start this Friday or Monday. It will be hard core 4 days then 30-40- days of sickness followed by bone marrow transplant. We are currently on an international search for a match, give CHOC a call, we need your blood for red, white, platelets, and potential bone marrow. Chase had a weekend of fishing, bowling, restaurant dining, ping pong, pool, Jacuzzi and time with special friends. For tonight, he gets a reprieve, until the blood results show whether he is a candidate for this study. When I called Chase's older brothers, they were devastated, and my guess is that they will decide to come home. Dan and I sat on the bed tonight and cried together. We read all your responses to www.chasecq.com. We prayed and said good night together to our boys at home with the scared realization of what is imminently in front of us. I hope for the next few days, Chase will fish, maybe go to a movie('Bucket List' would be my choice), laugh a lot, eat in abundance, believe in God's plan, and live life to the fullest. Don't be afraid to see, contact him directly and invite him to participate in life. On a gratitude list, thank you Dan Quickel for being the father who has provided so very much to Chase, thank you for your support, emotionally, financially, and just for being 'there.' You are a wonderful father and a God send for our boys. I love you, xoxo,Ma
March 08, 2008
"Spirit of Survival"
Yesterday was definitely the worst day of my life, as well as for Chase and our family. I have such a different view of priorities today beginning with the realization that Chase has a very difficult decision to make.
Let me back track by giving you the events yesterday. I had to call the school and inform the attendance office that Chase would not be returning. I totally lost it with 'Vanessa' who actually cried with me. She vowed to inform Chase's teachers about his condition and also would let Cody's English teacher, who was having some challenges in the classroom with him, that I would not be attending the teacher conference next week. Chase's counselor, Karen Everett, who has been a God send, called immediately and asked what she could do. In my deteriorating state of mind, I asked her to remove Cody from the problematic English teacher's class because I feared with all that Cody is facing with his brother, Chase and his condition, I wanted one less trauma to deal with. Cody came home after school racing through the house to tell me the good news...Unaware that the real reason he was being transferred was because of the extra stress on our family, when I didn't listen to his story and looked him in the eye, he asked, "Wait mom, how's Chase?" I told him the grave news. He stood so tall and strong as tears welled...His words spoke like a scared child, "Will Chase commit suicide?" That comment took my breath away. I sat silent and then responded with a big "Never..." Then, I asked him if he would ever? It took him a bit to respond, but finally a much awaited "No" was stated. Cody asked me to leave his room so he could be alone.
I went down stairs to figure out in my mind how I would muster the strength to tell my third son, Chase this horrific news. I fidgeted on the couch for what seemed like hours. Chase had called an hour ago to find out if the lab results had been called in. I asked him where he was and lied and said no call yet. He was just 'driving around' and I calmly asked him to come home. At 4:00 pm on 3-7-08, Chase came in the house and immediately went to the food cabinet to grab a snack. I said my hellos and asked him to come sit down. He refused and as he perused the snack selections, I again asked him to sit down, which he refused. I looked him right in the eye and said, "You have leukemia." He said okay and flashed me a somewhat odd, nervous smile, grabbed a snack and started to leave the room. I told him the doctor would be calling and that he had 2 choices, to do treatment, which means hard chemo and bone marrow transplant or no treatment which meant you know what. I asked for a hug and he said "Not right now." He went to his room, and I went outside to howl with my pain.
Dr, Neudorf called around 5pm and wanted to talk to us. Chase would not allow me to be on the phone, so I stood by the door and tried to overhear their conversation. Chase wanted to know his odds of survival with or without treatment. It killed me to hear those questions. After their conversation, Chase gave me permission since he is 18 to talk to the doctor. I wanted the answers to the same questions Chase had asked. So here goes, Chase has less than 2 months to live without treatment, or with treatment, a slim chance of survival. I believe Chase will choose to fight but if he can't tolerate the hard chemo, he can check himself out of the hospital at any given time. My plan will be to get full time nursing care at the house and let him fish out the rest of his life. On a positive note, Chase is fishing with his 2 best friends, George Deyoung and Blake Holden... May they have the time of their lives... I will try to remember to stay in the moment, to pray for a miracle, to ask you all to pray for a miracle, spend time with Chase, as your lives permit, knowing that his days may be limited; remember Chase has a spirit of survival, one of which we should all envy.....xoxo,Kim
March 07, 2008
"The hardest entry I've ever written...."
Chase has leukemia. As I write this, Chase is fishing with his best buddy Blake, he has no idea what is in front of him. The doctors said to send Chase fishing this weekend. Chase will be admitted Monday. We will face the decision to let his life be and face the course or to do very aggressive chemo then another bone marrow transplant. Chase will ultimately make the decision. Please no calls or visits to the house at this time...just pray, pray, pray...........I feel dead inside.....
March 06, 2008
"Terminal Optimism"
Today I am requesting your prayers for Chase. Chase's counts have been low for quite some time. Although he was sick a month ago, we had hoped his counts would rise dramatically. With minimal improvement, the doctor ordered blood work twice this week. Last night, Chase spiked with a fever. I called the oncologist on emergency call and this morning, Chase went into CHOC for blood cultures. He came home for awhile and then we went back for platelet transfusions and a bone marrow fluid check. He was grouchy and very quiet. I think he has known for awhile something was amiss. It took everything inside me not to break down and to be honest, I have had to behind closed doors. Cody caught my tears last night and got very emotional, as well. We will find out the preliminary results tomorrow late afternoon. The first three options are some type of virus, the fourth is unthinkable, a return of leukemia. Our doctors have advised us to invest in the thought that it is a virus, as they describe themselves as the 'terminal optimist.' I'll go with that....and the power of prayer. Tonight, I beg for yours. xoxo,Kim
February 26, 2008
"Family Update"
Chase started back at school two weeks ago. He is taking 6 classes plus rop(police enforcement).Chase has asked me to call him out at lunch several times and I can only guess he wishes to leave campus when the majority of the senior class are leaving at lunch. I have denied his requests, hoping he will connect with other friends at lunch and integrate with others. Today, Chase went to the oncologist/bone marrow specialist appointment. He is eighteen and would not allow me to accompany him. We had a fight over this decision and for today, I relinquished my parental authority and let him go solo, contrary to my gut feeling. Chase's counts are low and rather than the next appointment being in 4 to 5 weeks, they want Chase back in 2 weeks. That information is extremely scary to me. On Feb.25th, we met the 6 month time since bone marrow transplant, this is the time to celebrate. However, Chase needs his 4 molars to be extracted and his counts are way too low and not rising, as of yet. I will keep everyone posted on today's blood results. On a positive note, Chase looks strong, is doing well in his classes and is planning a trip with his dad and friends over Spring break. Corey, son #2, called from South Africa today and found out $1,500 had been stolen from his bank account via atm fraud. He is feeling violated and extremely saddened by the thievery. Although his monies will be reimbursed by his U.S. Bank, the entire ordeal has been disheartening to all of us. I continue to pray everyday, as I am sure all of you do, for the safety, health, and good decisions our children and young adults make. God willing, positive results are in our future...More later, xoxo,Kim
January 31, 2008
"Good News!"
Blood Counts are low but Chase's fever is gone. Obviously the antibiotics are working...will watch him closely and start school on Monday!! No worries on the graft vs. host rejection. Thanks for the prayers! Love to all, xoxo...
January 30, 2008
"Prayer Request"
Just when one would think things are on the up swing....Chase called me at work today to tell me he had a fever that was rising. Protocol is that anything over 101, you go to the hospital. Chase was at 101.5 and rising ....I called CHOC and they told me to have him come immediately. Being now 18, he refused to let me accompany him and drove himself to CHOC oncology by himself and that in and of itself, breaks my heart.Chase spent 3 hours, being prodded and blood sampled. We will know tomorrow the results, hopefully. I pray it is just a bacterial infection due to the exposure from a "friend" recently who was sick because Chase has been coughing for 2 weeks and exhibits signs of the common cold. The alternative is that is he is exhibiting graft vs. host disease which means he is having a reaction to the bone marrow transplant. God willing, we are dealing with the former rather than the latter. Needless to say, Chase is sad tonight, he had plans to take his last finals today, go to San Francisco with his dad to visit Kyle tomorrow and start school with his senior class on Monday. San Fran is out, obviously and we will see about school on Monday. Could Chase just get a little break from challenges????Anyway, as you all have come to know, there will be no pity party, Chase will prevail with attitude, optimism and strength and there lies my ultimate challenge...to emulate my son...Say a prayer...xoxo,Kim
January 27, 2008
"1-27-08 Happy New Year! "
With 2007 now behind us, we are ready for a year of adventure, happiness and good health. Even with the current state of the economy, we will all persevere. Chase has been very busy with school, trying his hardest to complete this semester and on February 4th, Chase will wake up in the morning like every other Senior and park his car in the student lot and begin his last semester at Aliso. Cody will get to ride with pride with his older brother to school. I can only guess that I will be extremely tearful and emotional that day. I am filled with so much emotion and gratitude for a new beginning for my family. I thank you all for continued prayers and support in so many ways. CHASE IS GOING TO LIVE AND THRIVE....Chase never believed differently. Thanks to God for the gift of life. As far as the rest of the family goes, Kyle continues to manage Ardvark in San Francisco and will return to college this summer. Corey is leaving today for South Africa. He will attend the University of Kwaculu-Natal in Pietermaritzburg. He will be gone for ten months so we had a 21st birthday and bon voyage party that was quite the celebration. The moon outback was a symbol of hope, well wishes and safety for Corey. Cody is playing Junior Varsity soccer for Aliso as a freshman and he is unbelievable. He also continues to be a sponsored skateboarder which keeps him a busy boy. Chase is thinking about joining Kyle in San Francisco and attending college there or waiting until Corey returns and going to Santa Barbara city college. My partner and friend is leaving my office so I am networking to try to find someone to lease her space. The office is next to the post office, has a window view and nice waiting area. Please pass the word around. With that, I will retire for the time being and keep a monthly update on Chase and the family. Hope all is well in your world....xoxo,Kim
