March 13, 2003
Kim and Dan want to thank all of you for your prayers and concerns.
Currently, chase has stage 3 Rhabdomyosarcoma
Tomorrow two specialists will do a bone marrow test, check his lymph nodes, and insert a port a cath in his chest for chemo treatments. They will be removing ear cartilage, the paraded gland, and facial tissue if necessary to remove all the remaining cancer. If all goes as planned, Chase will then have stage 1 cancer.
The surgery will take place at St. Mary's hospital in Rochester, Mininesota. Days after this surgery Chase will start his chemo treatments and hopefully be home in a couple of weeks.
Kim and Dan have asked for all your prayers, especially tonight as this is a very crucial surgery and that you write to Chase at the following address prior to March 23rd.
March 16, 2003
To all our friends, family, church members and teachers:
After 8 1/2 hours of surgery on Friday, the team of surgeons were able to remove the cancer and the adjoining tissues at risk.
This included several lymph nodes, which were found to be cancer free. We are still awaiting the results to determine whether the cancer is in the bone marrow. Because of the extensive nature of this surgery, the chemotherapy cannot begin until more healing has occurred. We anticipate the onset of chemotherapy to begin within 14 days.
We are all very relieved at the prognosis. At the present time Chase's disposition is solemn. The greatest light we have seen from him has been in repsonse to all your cards, packages, balloons and prayers.
Again, our deepest gratitude to all of you.
Kim, Dan and Chase
From the Mayo Clinic
March 23, 2003
To our friends, family and community supporters: We are very blessed for all your calls, visits, thoughts and prayers. I hope you will accept a general thank you, too, for the gifts, books, tapes, food, candy and money, balloons and cards that have honestly overwhelmed our entire family. Thank you, thank you so much.
On Friday, March 21, we met with Dr. Torno, the pediatric oncologist for CHOC. She ordered blood work and another CAT scan to check an area in the upper lung, which has some inflamation. We believe that area of cancer is due to a cold he had rather then more cancer. In addition, Chase had the 35 external stiches removed. They will fit him with an ear mold so that during chemotherapy, the ear canal will not collapse. This partial deformity will be addressed post chemo-treatment. Chemotherapy begins Monday, March 24, 2003.
At the moment, we are facing life day by day. Admittedly, we have gone from the euphoria on March 14 finding out surgically the tumourous cancer was removed to the reality of this next year. Chase will most likely, not be able to attend the rest of seventh grade, as well as first semester eighth. The only way it may be possible is if parents of all kids in the classroom were not to send their sick ones to school or/and if Chase's blood levels are not affected negatively by chemo. These two situations are highly unlikely. We were devastated to discover baseball, too, is highly unlikely since Chase's blood, as a reslut of chemo, will not coagulate and he could suffer internally with uncontrolled blood flow if an injury were to occur. Chase will have chemotherapy for 10 months, once a week, due to the life threatening nature of Rhabdomyosarcoma.
He has been chosen to be in the "make a wish" foundation. We're having fun brainstorming his potential wishes. Our wish is obviously for Chase to live. His recovery rate is 80 - 95%, which is great. If people ask what they can do, even though so much has already been done; this is what we request. Chase is basically in recovery. He needs to be positive and continue to socially integrate. School and baseball are out unless a miracle happens. Come visit, invite him out, sleepovers are even okay - just as long as he isn't exposed to any illness. If he gets 100 degree fever he will be hopsitalized so exposure to any sickness is life threatening. Other than that, the sky's the limit! Hug your children today and hold on a little tighter, a little longer. They are so very precious and we appreciatively thank you again. Continual prayer has been a lifesaver.
With gratitude, hope and love The Quickels
April 2, 2003
Dear friends, family and our supportive community:
As of April 2, 2003, we felt tonight it imperative to share the events of the day. Chase had his second chemotherapy treatment yesterday. Last week, after the first chemo, Chase was sick for a couple days and recuperated fairly well. Today, Chase asked to go fishing at the lake. We were astonished at his demeanor and decided "green light go!" I rented a boat and he fished solo and caught several bass! We hit euphoria today-our boy is going to kick this cancer!
At 8:00p.m, we got the call from Dr. Torno, our pediatric oncologist from C.H.O.C. I knew it was bad. The central research pathologist identified Chase's Rhabdomyosarcoma to have at least 10% alveolar composition. It is a mixed type of cancer which means treatment has been dramatically changed to include cytoxin as well as radiation;
We will meet with the oncology team next Tuesday. Chase will be hospitalized every 4th week at C.H.O.C. for a minimum stay of 24 hours. Those of you, who know Dan and me, know we have optimism and faith. However, I can not be dishonest. I am scared, tearful and shaking like a leaf.
God speed us through this year and pray that radiation, chemo and cancer do not hurt our boy.
With Love, The Quickels
April 8, 2003
Dear loved ones:
Chase finally came up with his "Make a Wish"! Chase wants a boat. We ask the nurse who informs us that there are no wish gifts that are granted that may inflict injury. I received a call from Dan on Thursday. "Hey, ma; this is Captain Chase and Deckhand Dan. We're down at Dana Point Harbor and we're looking for a boat to buy." My response was not really what they expected; maybe it was the stress over what we're going through. I, very strongly, state I was 190% opposed to the idea. Then I hung up. I called back and quickly stated I wouldn't be the bad guy and I would indulge my "sea crew" and check out the vessel. Within seven mere minutes or so, after surveying the scene and noting so clearly the exuberance on Chase's face, I exclaimed, "I love it. Buy it". So how about our name. "Chasin' Dreams".
On Chase's visit today, April 8, 2003, with Dr. Torno; here is an update. In anticipation of our appointment, we were all emotional (Dad, Mom, and Grandma Sue). Chase again is positive and displays inner strength. He repeats his vow, "I am not afraid".
The doctor advises us to let Chase be excused for the initial part of the meeting. This can't be good. I well up as the doctor peers through my soul and begins to describe the treatment.
Chase is at an "immediate risk" level as a result of the recent diagnosis of both embryonal and alveolar rhabdomyosarcoma.
He will receive VAC aggressive chemotherapy, which affects liver and kidney functions. His blood counts will be low and he will require periodic transfusions. Regular inpatient treatment will be every three weeks. Radiation will begin at week 12, for approximately three weeks with daily administration. There will be limited radiation exposure to the brain—— Hooray! Chase's prognosis has been lowered to 45 - 70%. Please keep this particular information for adult exposure only; we want children to focus on the positive rather than the probability statistics.
God willing, we'll beat this. Again, we appreciate all your prayers so much.
April 12, 2003
It's 6:20 Saturday night, and we are all exhilarated from our gift from God. We took "Chasin' Dreams" out for our maiden voyage, and lo' and behold we ran into a whale. He has been with us from 20 feet afar, wishing Chase wellness and a life ahead.
Signing off from the Quickels with hope in our hearts
April 12 - April 15, 2003
To our supporters
-Saturday, April 12th - After the magical trip on "Chasin' Dreams", we got home and Chase showed me his cap. I wasn't quite tracking right. What was in it? "Mom, it's my hair." Needless to say, Chase lost his hair. "Oh" the highs and lows.
Tuesday, April 15th update - We dischaarged from C.H.O.C. this afternoon. Being admitted to pediatric oncology, on a floor with only cancer patients was extremely moving; all different ages and degrees of severity. We got a tour of the unit and were quite impressed. The "hope room" was especially moving as Chase's eyes widened at the sight of a computer, my focus was on the dedication of the room by a deceased cancer child.
The chemotherapy began mid-afternoon. Chase immediately responded with dizziness, then nausea and diarrhea. The Atavan caused him to hallucinate and become delusional. He had restless sleep and several bouts of incontinence. Early morning, more vomitting but be assured we are here for the battle.
Chase's biggest sadness came when the doctor told him we couldn't take him to Big Bear this week. He had plans to fly fish with his buddy Blake Holden, after recently landing 10 bass learning the sport of flyfishing at the lake. He cried and cried. It was the abundance of all of it coming to a head.
April 20, 2003
HAPPY EASTER! HAPPY PASSOVER!
We are clearly celebrating the change of the wind from earlier this week. Chase really had a tough reaction to adding cytoxin to the chemotherapy. We are now preparing as per M.D. instructions that this is what we are in store for every 3 weeks during hospitalization and the days following. We will be limiting our phone accessibility, but e-mail via Kathryn will keep all-up to date.
The greatest gifts unfold as we acknowledge each step in the process. It brings us a positive side as well as a negative one (in either order). Miraculously, yesterday Chase went to the Fender Museum, then fishing with Michael and Andy aboard "Chasin' Dreams!!"
I take a deep breath to mentally prepare and enjoy this reprieve before the next storm. As for now, clear skies ahead.
With faith, love, and hope,
April 22, 2003
We've received several calls in regards to blood donors. We thank you in advance for such a wonderful gesture. Chase's blood type is A-positive. The blood and donor unit is located at 455 S. Main Street in Orange. The Hours are Mon., Tues. Wed., Fri. 9:00 a.m. to 7:00 p.m. and Thurs. 7:30 a.m. to 7:00 p.m. The blood and donor unit number is (714) 532-8339.
Chase received chemo today. He is extremely weak and the MD has advised us that in anticipation of low counts by Thursday, he may need to begin transfusions. He is also experiencing bone weakness and pain. We are requesting no visits or calls during this time. However, your thoughts and prayers are always welcome. We will keep you posted.
Thanks for being there!
May 7, 2002
We returned from CHOC inpatient late this afternoon. Chase is weak, dizzy and has vomited several times. I have to say, with the added anti-emetics through the IV, he is better, overall, than last visit.
We stopped on our way home to get another reel and pole. His hopes are to be on the water tomorrow. I love his optimism!
Since the last e-mail, Chase has successfully caught several trout, bass, bluegill, sunfish, and catfish. He says that fishing gets his mind off his cancer. Thank goodness for his love of the sport!
In addition, Chase was confirmed last Sunday and we thank all of you for your thoughts and prayers. This Sunday, on Mother's Day, I am especially grateful for the honor of having my four boys. They are my lifestring. Happy Mother's Day to all of you and yours and may it be a day to celebrate the bond, the love, the life we share with our children.
As always, make every minute count... With Love,
May 12, 2003
It's late tonight, the house is quiet. The boys, Dan and even Hershey are all settled snuggly in for the night. I am left alone for a bit to reflect on my own thoughts. As my eyes fill with tears of gratitude, I wish to personally thank all of you for every gesture, act of kindness, special prayers and/or cards of support... There seems to be no limits on the love from those in our community, some of which we don't even personally know.
I feel that since March 11, my life is a blur. When I can laugh, it is uncontrollable, and when I cry the same is true. On Mothers Day, I looked around at my family and friends and said to myself, "what a wonderful day!" Chase ate 'til his heart's content. He smiled and impatiently waited for Dan to say "green light go" on "Chasin' Dreams".
I am starting to know the pattern of treatment. Week 3 is always tough. During this recuperation period Chase looks forward to the days he can fish, paint, and play his guitar.
Again, wholeheartedly, Thank you!
I love you-
To all our people:
Chase has celebrated for several days. He is definitely "livin' life". By the way, that term is his own coined sentiment about today. Chase's counts were down but the MD let him go to an Angel game with his former coaches and team, he attended a glorious BarMitzvah and went on an overnight Charter boat to San Clemente Island where he proceeded to catch the most fish aboard! T.G.F.F. (Thank God for fishing)
I, too, have been moved by his participation in life. I attended a birthday party for a cancer survivor whose son is brain injured, visited for hours with Chase's old babysitter (Lorena) and her family, and attended a luncheon for pediatric cancer. When the two mothers who both had lost their children one year ago told their stories at the benefit, I swore to myself that I would not be one of them.
It has been said that if Chase weren't to make it, I will survive. I refuse to think a lot about that option. Today I realized his long eyelashes are gone. It does make me cry. When people ask me how he is, I hope you don't mind that I don't lie. I know everyone likes to hear the positive, and I will continue to share that with all of you.
Please let this be my safe place. For those of you I know and love, and those who I love and don't know yet, I appreciate this opportunity to share. It gets really scary at times. Tomorrow I will go with Chase for inpatient treatment. We will deal with the chronic discomfort, the purging, diarrhea, and physical weakness. Be assured I will be strong for my boy.
I get up
I fall down
Meanwhile, I keep dancing-
I love you all, Kim
End of May, 2003
Upon admission, Chase had to be wheelchaired to the Oncology unit. This was a first for him. After such a busy weekend, he is completely void of energy. He's grouchy and doesn't speak a word. His hemoglobin is 8.2 rather than 16 so we'll begin transfusions. When the blood is delivered, he asks if it will hurt going in. After the third questioning he finally accepts the nurse's "no" response. I take a deep sigh. Chase asks to be spared viewing the blood. It is too scary for him. The nurse assures him, he will feel better. I tell her how grateful I am for our secret donor. She tells me CHOC is currently in a blood crisis. All leftovers will be donated to others in need. I am starting to see how vastly Chase has affected others.
The silliest things that make you cry.... We were watching "Home Improvement" and the shows focus in on the son's recently discovered suspicious throat abnormality. I can feel myself tremble. At the end, the child's doctor calls and it's not cancer. I really start to cry and its not even "that time of the month". I wish this were a fantasy TV show. Chase has been light headed for three hours. He won't take a painkiller. He is throwing up incessantly and blames it on the chicken noodle soup. He finally agrees to the IV Benadryl and now he is sleeping.
We watch the Disney channel and Chase paints briefly with his new acrylics from Kathryn. I leave to buy some pretzels from the custodian who let's me sneak into the vending machine area. I stop on the Oncology playroom and am shocked at 8:00pm to see a room filled with young kids. A baby catches my eye. The baby's head is bandaged, tubes coming out of what seems everywhere and the baldness is strikingly familiar. What a terrible disease cancer is. How dare it take our babies. Chemotherapy was administered. We will meet tomorrow for the radiation consultation, which will begin June 16 conjointly with Chemo. We'll stay longer this visit as we knew, one day, this would happen.
To our mystery donors; Tonight Chase will feel better because your blood is running through his body. Thank you for your gift of life.
Another special gift giver made Chase his own website: http://www.chasecq.com. Check it out and thank you for this site!
"I can be changed by what happens to me but I refuse to be reduced by it".
My motto, here's to the survival of the fittest and not so fit. We're going to kick some bootie.
I love you all,
June 11, 2003
To our lifeline supporters,
We've had quite a success with Chase's fishing excursions. Friday, 6/6/03, Dan surprised Chase and they went out on a charter boat in San Diego. Dan proudly called to inform us that not only had Chase caught the first fish, he had landed a 25-pound yellowtail tuna. Needless to say, Sunday was a day of indulgence-fish taco's for all!
On a more serious note, we were called last night to go to ER for blood transfusions. We were admitted to the pediatric oncology floor and got the last bed. The unit was packed and the discomfort from the patients was painfully obvious.
The mother of our roommate gently peered through the curtain to say hello. Within minutes, we found out that our sons shared the same cancer: RHABDOMYOSARCOMA. We spoke throughout the night. Her son, Jeffrey is 3 weeks from the end of treatment. I had a million questions, many of which, now looking back, I wish had different answers. As we face radiation beginning next week, the focus is on those particular concerns Jeffrey wasn't able to speak for 6 weeks and stopped smiling for 6 months. He has optic difficulties and became extremely weak. She said nothing could have prepared her for the radiation. Her son also developed liver disease, which effected his continued treatment. When you think that only 250 children in the world get this type of cancer annually, how amazing to personally know four children affected with this beast, (including Chase).
I was glad when Chase finally dozed off. It allowed me to silently hear Jeffrey grimacing in pain, saying "it took away his sleep". Once I finally fell asleep, a nurse nudged me and said it was 7:00 a.m. and time for Chase and I to leave; they needed the bed.
We headed off for chemotherapy at the adjoining clinic. Chase ate a couple donuts, which he promptly vomited after treatment. Miracles, as they may be, Chase is going fishing this afternoon! He's going after "the big one" and God knows how much he needs it!
Next week is our biggest challenge. Chemo, radiation, MRI, CAT SCAN. Please hold all calls from June 16 to June 21st. Blood donors please be on call for fresh blood donations after June 19th. Call CHOC blood donor program for more information.
We love you,
p.s. Chase has added "Livin' Life" to his daily affirmations. Won't you too?
June 16, 2003
The day started out emotional. I retrieved our Register to discover the article about Dan, Chase and our family. The color photo of Chase sent me to my knees. The tears I try to save for private times..fell without hesitation. I thought the article was a perfect tribute to Dan's contribution to the family.
The traffic was lighter this morning enroute to CHOC. I was grateful as we have a lot of appointments scheduled today. Blood was drawn, and then the CAT scan and now I sit watching from afar, as Chase silently sits on that cold metal bed for the MRI. He doesn't move and has trained himself to follow protocol precisely. He is truly amazing!
I leave briefly to pick up the prior MRI's so a comparison can be made. As I walk to the radiology clinic, I hear a beautiful sound; I look below to the lower level and there sits an older woman playing the harp. The music is soothing and it moves me to sit down, and take a deep breath. My PMS is in full swing and there come those tears again.
Chemotherapy, regardless of additional anti-nausea meds being administered, was difficult. The nausea and body discomfort prevail. Radiation took forty minutes. Chase was given Atavan and was rather sedated. He thought it took only 10 minutes. Our day roommate has a ten-year-old son who had almost completed 2 years of treatment. Unfortunately, his leukemia is back. When his mother and I met we immediately hugged and cried. We held on in fear. I have a strong feeling we will be friends. There is comfort in knowing you are not alone on this journey.
We are discharging this morning. Chase wants to attend the celebration luncheon and graduation of his 18-year-old brother, Kyle.
For today, we will count our blessings. We will take the good feelings at the moment and worry about tomorrow then. As for me, I'll take the break and relish every second.
Thanks for everyone who rallied last minute to get Chase fresh blood. Next week, if not sooner, it'll be pumping in Chase's veins giving him renewed strength and hope.
June 22, 2003
What if one day, when we are each faced with the end of our lives; we were asked to pick one life event, which has taught us the most. Today would be mine-the idea that Chase's diagnosis of alveolar rhabdomyosarcoma just three months ago would follow with such an immediate response from so many supporters stands out as a clear indication of the goodness in people.
I've thought long and hard about how to communicate effectively to each of you just how much our family has been deeply touched by your support. There have been so many random acts of kindness; it is, frankly, overwhelming.
Chase Donovan Crawford-Quickel was born on December 20, 1989. He was suppose to join us on Christmas day but decided not to share his birthday. Chase came to this world calm and kind. He has approached his plight with cancer with the same demeanor. He wishes to say to all of you his thank you's and prefers to stay out of the limelight.
Chase became a baseball player early on when he would chuck his baby bottle at the walls if it weren't the perfect temperature. With three other brothers, he also learned to hoard his food when necessary. One day, as we were all leaving for the day, we were alerted that Chase had placed a popcorn kernel in his nose. I took my fingernail to get it out and proceeded to expel 9 out of the right nostril and 7 in the left. They were lined up as if we were playing pinball. Dan teased; if he'd had a fever we would have fresh popcorn.
As Chase grew, so did his interest in sports. At soccer, he was famous for following the pack of players rather than the ball. Baseball, thus, eventually became his lead sport. Last summer, Chase was invited to play on a special team that went to Cooperstown, New York - "the field of dreams." Chase was asked to continue on this team and made it to team photos. That would be his last time on the playing field because the diagnosis came soon after.
Chase is the type of player who was diverse in his position. Whether it is outfield, third base, pitcher or infield, you can bet he'd do the job. Most recently, he's taken that passion to the water. To catch and release is his dream come true.
Chase is a survivor. He is currently in T.O.C. (Tournament of Champions) of his life. T.O.C. is competitive and Rhabdomyosarcoma believes it will conquer. This is the game of our life. We've got strong infielders, outfielders, and back up. For this match, you not only have to believe in the game, but also believe in winning. You are ALL our team. It's called, "Livin' life-Chasin dreams".
250 children in the world get rhabdomyosarcoma a year. No one knows why. Your community support will donate to research as well as letting Chase have opportunities to advance in his future; given repercussions from treatment.
We believe in faith and perseverance. If today is the first day of the rest of our lives, what a way to kick it off! My husband and I would like to especially acknowledge the following 9 special "angels" who have made this journey possible: Shelley Figueroa and Kathleen LeFranc and RNLL for making the race possible, Lori Midtsatre for creating the website, my parents: Bob and Sue Duesler, Kathryn Holden (my best friend), and our three other sons; Kyle, Corey and Cody for being so brave.
Chase, we believe in you and to all of you, thank you again and God bless you!
June 23, 2003
To our team, "Livin Life Chasin' Dreams" (renamed as per Chase's request)
God knows when your plate runneth over! Sunday was truly a gift from above. June 22, 2003 our family was astoundingly greeted with a race for Chase's life. Because of YOU we will meet this challenge with hope and inspiration.
This event was life altering. With gratitude for all the following we, as the family of Chase Crawford-Quickel honor and thank you for:
The ride for Chase in that wonderful car, the balloons, the set-up-so planned and organized, the food and drinks, the hugs, the verbal support, the awesome music, the organization, the workerbees (you volunteers rock!), the donations, the race itself, the enthusiasm, the medals, the raffle tickets, the website, the blood donation, the silent auction workers and donations, Chase's personal gift, the cooks and snack bar person, RNLL, City of Laguna Niguel, the multitude of sponsors, the listeners, the silent providers, the attention to detail, the unconditional love and the prayers.
To all of you... we are so very grateful and we love and thank you.
July 14, 2003
To our "team" supporters:
The "Race for Chase" is still feeding our family with unconditional, overwhelming love and support. Again, thank you all for your support in so many ways.
Since that day, there have been so many "events." From my Minnesota relatives surprising us for the "race," to the Harley biker's charity fundraiser for pediatric oncology, to the volunteers like "Stan" from C.H.O.C., Gary James for the extra special care, and Benny Bendickson for the fantastic fishing trip, and efforts from everyone else with their wonderful contributions, we applaud you enormously.
Here's an overview- I cannot promise it will-be brief, but I will try to keep this to a summary of recent events:
6/25/03: Chase and I went to Petco to evaluate whether purchasing an aquarium was warranted. Chase wants a catfish (his secret code name by Dan). The "expert" tells us that aquariums breed infections and warns us against it. I told Chase, "no" as he proceeded to hold back the tears and leave my sight.
I found my son balling in the corner of the store. I found myself, once again, cursing internally this deadly disease. We drove silently home. Chase is angry and so am I. As I park our car, Chase asks if we can get a lap dog, quite an indication,of the opposite of our present chocolate Labrador who is llOlbs. I say "no" and the silence persists.
Chase slept this night with his arms wrapped tightly around our old dog, Hershey. He laid on the Mexican pavers with a blanket around them both. Hershey seems to sense he is needed and yearns for a reprieve.
Benny Bendickson picked up Chase to go fishing. Chase uses "fishing" as a wonderful distracter. God has given Chase good fishing "karma." Benny called only 20 minutes into it and told me to come pickup a large halibut Chase had caught. When I got to the harbor, that 20-pound halibut was flopping angrily about. I took one look at Benny and Chase and I knew how proud they were. For the first time in a long while, I cried with joy.
As a sidenote, our house is flooded with a slab leek. We had to evacuate last week. Kyle, our 18 year old, was to fly to Europe but the Bradley terminal was closed and evacuated due to the discovery of a bomb. He is now safely in Europe but we are still recuperating.
Since then, Chase and I met Tim Salmon, thanks to Gary James. Chase would not expose himself to the "baseball" tips. It's too painful to visit the loss of the game, but we got a signed ball and a great photo!
Recently Chase caught one 25 lb. Yellowtail from San Diego, one 20 lb. Halibut from Dana Point, 75 fish with two friends "cruising" and numerous fish on a Long Beach charter. The fish say, "Take me I am yours." I say "God bless fishing." It's my son's lifestring. The more you count your blessings, the more they increase.
Update: Chase has 3 more days of radiation. He has red burn marks, chronic body aches and fatigue. We shared a room with a boy named "Timmy". He had leukemia at age 7, remission for 15 months and relapsed. He has currently been in and out of the hospital for the last 5 years. He is getting a spleen removed tomorrow as well as a liver biopsy. He is 13 years old also. His eyes scare me as they behold a child well beyond his years.
My boys finally visited the pediatric oncology unit yesterday. Corey was extremely silent. Cody had a billion questions. At one point, when he finally realized all the bald babies had cancer, he let himself cry. At that point, I thought to myself how deeply we are all affected by cancer.
To all of you who have the calling; visit, love, ask, and give to the 3rd floor C.H.O.C. Oncology. Whether it be a minute, a second or an hour. You are giving life to a child who may or may not make it.
For Chase: We give it all.
I have to remind myself to breathe.
Love to all of you-Kim
July 16, 2003
A DAY TO CELEBRATE
The month of radiation ended TODAY. To kick off the celebration, Chase is taking a train to San Diego to be guests of our cousins, Debbie and Scott Duesler-Thompson. Chase will be fishing down south on a 50-foot boat. He'll return Thursday. If blood counts are good, he'll depart Dana Point for Catalina with Dan and George and Cameron DeYoung. They plan on returning 3 days later with a multitude of fish and some great fish stories (we hope!).
Two more tidbits...
Last week, Special Forces Marine, Bob Monticup, took Michael Nadel, Andy Margolis and Chase on an extraordinary day at Camp Pendleton. They toured private areas, met top officials, practiced with the flying simulator, etc! For hours these boys joined the ranks and had the time of their lives! They even came home with hats/posters, stickers/medals and other memorabilia. Next time, Bob promises to take a ladies group-any takers? I won't be missing that excursion. Thank you, Bob!
The Pharmaceutical team asked me to grant permission for Chase to try "EMEND," It's a new anti-nausea medication ($250.00 for 3 pills!) which was FDA approved one month ago for adults. Pediatric studies aren't complete yet. Since Chase will be 14 in December and 14 is the youngest age tested, we knew we had to give it a try.
MIRACLES DO HAPPEN! Chase didn't throw up, have diarrhea and slept through the night. We were discharged in less than 24 hours.
The manufacturer of "EMEND" is Merck. Buy stock now, my friends and family. This is, if it really isn't a fluke, the miracle for chemotherapy recipients. Rather than be in so much physical discomfort, Chase is fishing all this week. I feel like celebrating and giving thanks to God. Please feel free to join in!
By the way, I've personally renamed "EMEND" TO "AMEN." Don't you agree?
In complete celebration,
The Quickels and The Crawfords
July 30, 2003
To our supporters:
I anticipated this treatment like no other; to discover whether "EMEND" was indeed the "AMEN" answers to Chase's treatment. Chase asked on the way to CHOC why he just couldn't get chemotherapy at home. He said, "Mom, I hate this hospital!" I told him one day, long after his treatment, chemo may happen at home. He suddenly changed tracks and regretted he had left 2 poles at home with broken tips (which he had hoped to drop off for repair). Being half way there, I weighed the pros/cons and made a U-turn. We dropped off the poles and set sail for inpatient treatment. In the scheme of life, let's stop and prioritize. To Chase, this was imperative.
Last week, my cousins Debbie and Scott Duesler-Johnson bravely set their sights on kid/house/dog sitting. Dan met his best friend Dimitris, in Las Vegas while I left with on of my closest friends to San Diego for a conference. Dan and I rendezvoused in Las Vegas and took a much-needed 24-hour reprieve. Debbie and Scott played parents, cooks, drivers, and cheerleaders, Hershey dirty duty doers, secretaries and probation officers. They are our angels and we graciously THANK them! My favorite story was when Hershey ate all Cody's candy and later had a bout of major diarrhea all over the downstairs. Debbie and Scott found the boys quietly watching TV in the midst of it. Upon questioning, Chase stated "Don't worry - the babysitter always takes care of these problems.''
Benny Bendickson took Chase out yesterday for a Dana Point day of fishing. Chase caught among others, a big white seabass. Join us, fisherman of the future if you dare. Chase awaits your invitation and you can be assured he's got great fishing karma.
On a deeper note... we are at 18 weeks out of 47. Chase has lost more weight. He is currently having trouble moving his fingers. I am scared that it may disable him from fishing and I pray that God will allow him to continue to fish. It brings him life.
Chase threw up once and had nausea. Three weeks ago was a true miracle and truly today is better but not as good as then. I still say "AMEN'' to "EMEND" but add this tip: Chase throws up from the saline, which is administered before and after any meds given through his port. Our angel nurse tonight suggested D-5 (Dextrose 5-sugar water) to flush instead. Chase kept his meds down and we are hooked. Great News!
Upon our hospital discharge, Chase was informed that the san Deigo Charter trip couldn't happen on August 7 due to his blood counts being low. He was devastated and unbeknownst to me; Dan (with M.D. approval) took Chase and Blake on July 31 for an overnight on a San Diego Charter. We had plenty of fresh albacore-yum! The other news was extremely hard to bare. An occupational therapist examined and tested Chase's hands, which he had complained weren't able to straighten properly. As Chase stared into my eyes, the therapist put a pin in different sections of his hand. He had absolutely no feeling in over 50% of his hand. The therapist told him he could not fish anymore for fear of hooking his hand and getting an infection (which his body couldn't fight). I went to Chase and we both cried and cried and cried. Later that day, I got my spirit back and my strength. I DON'T CARE what anyone says, Chase will fish. It is a Godsend.
July 30 continued
Back to the emotional level. Those of you who have teenagers will relate- it
has been several months, with sparingly a lapse here or there, that Chase has let me in. I can sneak a smile here or there, but overall, as a 13-year-old diagnosed with cancer, he has been resentful and challenging to deal with. Again, I have practiced taking a deep breath and letting go.
Tonight, Chase grabbed my hand and asked me to hold him. I was so overwhelmed it took my breath away. I held him with both hands and for the first time in a very long time, he took off his old, heavy hat and let me massage his bald head. Then, the unheard came, "mom, will you get in bed with me?" I really felt my legs weaken, I tried to act casual and stifle my ultimate excitement as I gingerly got onto that slim hospital bed. Then, the ultimate gift, "mom" I want to feel your warmth - will you cuddle me?" God, I've waited my life, it feels for him to say that. As I cuddled him, he dozes off. He doesn't know that the blanket is soaking wet from my tears.
I break away to momentarily write to all of you. I'm allowing myself to cry deeply now because I can't help it.
I take a deep breath again and sign off. Tonight, I will sleep in bed with my 13-year-old son who has cancer because, tonight he has chosen to let me in and I feel forever indebted. Chase is enroute to CHOC Hospital to for transfusion as well as platelets. We do need platelets, which we did have tonight. It just takes a call to CHOC blood donor services to set it up, It takes 3 hours to get platelets from donors. We checked in at5:30 p.m and discharged at 1:30 a.m. We will keep you posted, Thank you blood donors! Long night, We'll rest now. Goodnight-
August 17, 2003
To our team:
We are about to finish our family vacation in Balboa. We have indulged our children in lots of fun at the "fun zone", pizza galore, bicycle rentals, movies, visiting friends and, of course a ton of fishing.
Chase begged me last night to accompany the family on our boat,"Livin' life-Chasin' -Dreams" for a day fishing. Hesitantly, I agreed upon conditions #1: 1 could retire early (i.e. within 4 hours), #2 everyone accepts due to my back sensitivity, no racing in the choppy ocean, #3 Let's catch fish!
Cody caught the first fish-a large mackerel. Chase followed with a halibut. Then we hit a dead zone. We headed for the jetty-the crashing; waves at the Balboa Peninsula at "the wedge." We threw our lines. Chase taught me well. I caught 3 large mackerel in a row (which I proceeded to scream exuberantly upon each one caught). Our battery died so we fished more while a waiting vessel assist and lifeguard rescue. It only added to our adrenal rush. Our boating trip was now well over 1 1/2 hours. Thank you Captain Chase and Deckhand Dan- pure fun!
By 8:00 p.m. we had dinner at Hooters (the boy's favorite restaurant-surprise, surprise) and spent our last night getting to bed by 1:00 a.m.
I am lifted tonight at a higher level. I think I am ready for a charter overnighter. Chase loved on me today like no other. I am finally learning the game. Thank you God.
P.S. Hard Chemo starts this Tuesday-
August 18, 2003
Regards to all,
I didn't sleep well last night. I had weird dreams; i.e. Chase had a high fever and no matter what I did, the fever wouldn't break. Next someone stole my necklace and no one would help, and the last one; Dan forgot to set the alarm and Chase missed his helicopter ride. I guess somewhere deep inside; I must be feeling out of control-not a very comfortable place to be.
Having said that, let me get on to our miraculous day. Another angel, I suspect Sharon Horn and Dr. Abidi, may have given Chase a wonderful gift. We arrived at UNTLAB early this morning (7:38 am). The line was already long and I feared the wait. We are, as usual, the only ones in line to get blood tests for a teenager. Most people are older and I feel for Chase. Around 8 am, one of the technicians arrived to open the doors and grabbed Chase's hand- "follow me," he said. I'm not one for taking cuts, but today Chase has a special day and we are hurried. I lean on the rail while Chase gets his blood drawn, and I cry again and again. My boy won't have to watch in line all the sick people who wait their turn. I am filled with gratitude.
Fast forward to 9:00 a.m. Chase, Cody, Grandma Sue and I arrived at Firestation 5. We were greeted with a multitude of staff (firefighters, engineers, community service reps, and paramedics) and were given the ultimate tour of our life. Then, Grandma Sue, Chase and Cody got a ride in the grand fire engine to the lake. I followed alone as my heart beat rapidly.
I slowed my car, as we came around the park bend. Newspaper reporters and radio reps were everywhere. The snapping of cameras was overwhelming. I felt Chase's nervousness. That's when I put my sunglasses on and let it flow. I said to myself, "Kim, you let yourself go day to day functioning and probably pretending a bit, it's all okay". I know this is reality-not a dream seeing the media representation tells me, Chase is truly sick. This is a serious cancer. I couldn't snap my fingers and make it go away. This is our chance to shine but for all the wrong reasons. I wish for this type of reception for any other reason. With all your support and prayers, one day we'll celebrate for all the right reasons-Chase beating rhabdomyosardcoma.
After the awards were presented (i.e. Chase as an honorary firefighter complete with gear, helmet, poster, etc. etc.) Cody, Chase and I were off with Commander Chuck Street for a 20-minute tour of South Orange County. Guess where Chase requested to go.. .You got it! Water front to check out the fishing. It was beautiful and we are all hooked. The media followed with interviews. I got tearful at watching Chase go through the hotspot of attention. He is so resistant to taking the limelight. He was asked if he thought he was a hero and he quickly responded with a headshake and a "NO!" response. That's his opinion, not mine.
To watch his resiliency, his approach to all this treatment, blood tests, chemotherapy, radiation, and to keep fishing so diligently. For today, he is my hero. He is someone, at a difficult age, doing something I can't say I could do. But let's not let him know that, let's pretend all this is just normal survivalhood and thank you all for being so supportive in so many ways.
Love to all, Kim
August 26, 2003
Tonight Chase, Cody, Cory and I went for the Renegade 1-year reunion. As we drove to our hosts' home, the Lees; we saw the team playing baseball in the cul de sac. The boys looked so much older and more mature. Chase reminded me that we would stay 1 hour and not more. I told the boys to get out of the car and I sighed in anticipation. Corey and Cody seemed to hover around Chase as protection.
As Chase got out of the car, he glanced at me with a grimace. Zach hit a fly and ran around the bases. Oh to be a boy without cancer! I walked inside and met our wonderful team parents and families. They are the best! so loving and caring. Soon, the team boys came in to swim, to play, and to eat. Chase, Cody and Corey stayed in the garage and played Ping-Pong by themselves. I felt selfish tonight. Although I kept an upbeat disposition, it made my heart cry to see how healthy the boys had grown in the last year. Chase, on the other hand, has regressed. He is wearing tiny clothes, his voice is wobbly, he walks with leaden feet, and he is grouchy.
I wish he could be in that pool right now playing water volleyball. The comradery he had last year with these boys. More importantly, I wish and pray for a full recovery so he will be able to get back into life with these special friends.
I have a request. Chase fishes and that has become his life. However, with school starting, people get busy and he really hasn't seen anyone much. Blake and Bobby have been so kind to continue the fishing excursions but Chase can do more if you'd be open enough to calling, inviting and/or coming to visit. Don't'be afraid!
During chemo last week Chase got nauseous and took Atavan (which he hates) l/2 dose was prescribed. He felt drugged and yucky! But, he never vomited etc., etc., EMEND is a definite "AMEN".
We are at the half way point, 5 months to go. I am so grateful for e-mail and I wish I could speak directly to all of you but being computer illiterate, I really can't. I want to thank each of you for being so special in so many ways.
P.S. Chase goes for chemo today. He has a visit with a hand specialist and physical therapy for "drop leg" and hand treatment. Ginger Geidt has given Chase paraffin hand therapy, hand exercises and hand massage. She took Chase tomorrow and lent us her expertise. Talk about angels: Thank you Ginger! Chase will be given physical therapy and oecupational therapy twice a week now to help his present condition. He will need transfusions and platelets probably this Thursday. We have no platelets so if your available before this Thursday, call blood donor services at 714-532-8339.
Thanks Again! Kim
August 27, 2003
Today was the first day of school for the majority of kids. Today, Chase was admitted to CHOC for blood transfusions and platelets. He was exceptionally unhappy and his dispositSon depressed me greatly. We entered room 324, Bed 1 at 12:00 p.m. We shared a room with a bald teenager who lay mute and unidentified. We have learned to appreciate silence....
Our nurse Lillie has been a charge nurse on the floor for 13 years. She has seen it all and was very attentive and professional to Chase. Once I got beyond her "wall", I found her to be our #1 in care. She took Chase's vomit upon admission and made light of it. She made him take his pain medication without hesitation. She told us they call her "Queen Bitch". I call her "Queen" period.
Chase slept during blood transfusions and platelets. The floor is packed, no available beds or chairs. I sit on a hard chair for 5 hours trying to stay busy with paperwork. At the 6th hour, I slip into Chase's hospital bed to rest before the blood pump goes off to alert us we can go, if and only if Chase will drink or eat. Chase sips down 2 ounces of Coca-Cola. We are released.
Chase goes to the grocery store on the way home. He chooses: cinnamon iced rolls, cinnamon pop tarts, bacon, deli sliced ham, sugar cookies, cheese-its, chocolate donuts, raspberries and milk. I am thrilled he has an appetite. He is 5'51/2 and new weight 99 pounds. We've left the 100 Ibs. mark and I am sad for so many reasons. God willing, Chase will fish Friday with George DeYoung. Let the fish be plentiful!
I love you all-Kim
August 28, 2003
To our supporters,
Sorry for all the e mails this week but a lot has happened and these e-mails are my "purging". I can vent unconditionally and I wish for all of you, that you may, in the state of trauma, have that "outlet".
After doing hospitalizatlon yesterday, with transfusions and platelets, I figured we were due for a non-laborious Labor Day weekend. Dan informed me at 5:00 PM that he wanted to "seize the moment" and take Chase to Catalina tonight for the long weekend. I called to get his blood counts after labs were taken this morning. Upon getting the results on my cell after work (7:15 p.m.) the bad news was Chase's blood count is the lowest it's ever been. He needs MORE platelets and blood transfusions ASAP. I immediately called Dan who was en route to Catalina with Chase. Dan argues, "can't we just go, call the doctor and plead..." I agree to call the M.D. after hours but know it's not a good prognosis. After being paged, Dr. Torno explains the risks and severity and agrees to hospitalize Chase, do the blood transfusions and platelets tonight! If all goes well, they can go, as long as Dan recognizes Chase's low count and vulnerability to fever. He will need to be air-vac'd to CHOC if he has a fever. Dan and Chase still insist on going to Catalina. Denial is in full swing.
On another serious note: remember my Uncle Bob, AKA Dr. Robert Beckenbaugh, orthopedic hand surgeon from the Mayo Clinic? My mom called at 4:26 p.m. to tell us he was diagnosed with inoperable throat cancer. My Uncle Bob directed Chase's treatment, on an emergency level, and basically contributed to saving his life. He has always been the pillar of my family and an advocate for any friend, family or strangers, needs in terms of medical treatment. I love him more than anything and if I ever asked for prayer it is now, today for "Bobby". I am indulging in your abundant community support and sense of prayer and goodwill;
I hate to share all this news; I can't believe the lows. Today has exceptionally been tough, but remember the cliche, "when the going gets tough, the tough get going "
Anyway, we hope that we can get a break from bad news. Again, don't be afraid, we're not contagious.
September 8, 2003
"Practice Random Acts of Kindness and Senseless Acts of Beauty"
Ten years ago, when Kyle (my oldest) was in third -grade'! I volunteered in the classroom for a different purpose. I had decided, after reading "Chicken soup for the Sour (part 1), that I would vote myself in as an ambassador for the basic principles provided in the book. These "lessons in life" became my "montra" and I wanted to share the word; to spread real life experiences to our youth exemplifying the major belief, that most people are good. In my private practice, I have come to observe many people who have been met by betrayal, abandonment and sometimes, abuse. This has hampered their innate ability to believe in the goodness of people. Therefore, I targeted a young audience and up until 2002, my mission was served. Many of you, who's children were in these classes, might want to ask them about their favorite story-1 can guarantee you they will have something meaningful to tell you, so listen attentively. We, as parents, need to seize these moments!
Ttell you this because now I have been profoundly moved by my own experience, personally, with all the goodwill and kindness from all of you I know and all of you I don't know yet. Enclosed is a very special letter from a great family I've never known who granted me permission to print their "gift"
In addition, our family has remarkably been met with frequent love, support and "random acts of kindness and senseless acts of beauty". To those of you who have stopped us on the "run" who reconfirm support and prayer-we love you. To others who give in their own special ways; i.e. my car poolers (Carol, Rocky and Mark), Ginger for her therapy and drives, Donna for here lovely concern and help, Jonathan, (the miracle man,) our blood and platelet donors, and for all the rest of you who pray and silently hope for us, I applaudyou.
Today, 9/10/03 threw me for a loop. I worked early and picked up Chase who was exceptionally talkative having returned from a 3-day charter in Mexico. He spoke of the 20 plus giant squid, skipjack tuna and corbina he caught. He went to bed and we both knew tomorrow would be the difficult inpatient chemo day. We arrived at CHOC early and Chase's blood was drawn. He refused to drink much, curled in a ball and seemed lethargic.
September 8 continued
This was the first time I forgot to bring the office a treat and I was mortified. We were appalled to get notified an hour later that Chase's blood counts were too low to get chemo (i.e. 9 white blocd cells) and we were to go home. With bags packed, mentally ready to do the deal, we returned home. I felt more depressed than I've been in a long time. My visiting mother in law from Tallahassee tried to be a cheerleader and raise my spirits. I had 3 hours of phone calls to rearrange work and MD appointments. I feel exhausted and know the harder week is yet to come.
Chase is in for a tough 4 1/2 months. His disposition is poor. He is highly sensitive and appears more and more effected by the chemotherapy-mentally and physically. I fear that the good times are behind us. That is in no way an invitation for a pity party. We will FIGHT, FIGHT, FIGHT! I am facing my worst year, that one day soon; Chase won't want to fish. God let us ride this a bit longer please. Thanks to all of you who help me breathe. I love you.
On a serious note, my Uncle Bob began chemo and radiation this week. I am very emotional and shocked. I recall 2 years ago watching that poison "chemo" pump into my mom to kill her breast cancer. Then, this March, the introduction experience from my mom prepared me for Chase's chemo treatments; Today, Dana, (Uncle Bob' s wife), I pray especially for you because God knows today is the beginning of the journey. Please pray for Dr. Robert Beckenbaugh. I thank and love you.
Dearest Chase and family-
We hope this letter finds you well. We wanted to do something anyway we could to help you. I am a member of Crunch Fitness and was given the flyer regarding the 5K. Though we were unable to participate we decided to do our own little fundraiser. Our daughter, Jamie, turned one and in lieu of gifts we asked for donations in honor of Chase.
I am thrilled to say our family raised $1,000.00 + dollars. May God bless you all during this trying year.
I have enclosed a picture of Jamie for fun to let you know it is our pleasure to share from one angel to another.
All our best,
Nicole, Jim, Justin, Jamie and Stephanie
September 17, 2003
The Chase update: "Livin'D Life,"
Hello friends and family,
With the disappointemtn from last week, that chemo had been postponed (pushing our end date one week further) we met those lows then the highs.
Chase's recent MRI and CAT scan show no metastis of the cancer cells. Thank you, God! Miracles being as they are, how about this one....Chase and Blake went out Sunday (9/14/03) on Dana Pride. Chase caught the biggest fish; a halibut; he won the jackpot, $200.00! On Monday (9/15/03) thanks to Ken Clark of Young Life who sponsored Chase; Chase fished all day and most were skunked, Chase wasn't; he caught a nice calico bass and a sculpin. He also won a Shimano pole at the raffle.
Fast forward to today; hard chemotherapy inpatient. It's 10:05 p.m.; Chase amazingly SLEPT through chemo. We're talking, sharing fish stories and planning my first time joining him on a charter. His enthusiasm is getting me psyched up. We watched a fishing video twice today during chemo. I am starting to recognize the fish species. I do hope Chase's fishing karma will spread to me. Who knows? Maybe I'll quit my job and become "pro." Kim Quickel AKA fisherwoman. For example: Do you know how to differentiate between yellowtail and yellowfin? I do! Ask Chase.
Chase asked me tonight if rather than go to a four year university, he could go to "Captain's school." He wants to become a licensed Captain and own and run his own charter. Okay- here goes my tears welling. My boy is thinking longevity-the future-OUR future. I told him I think that he'd be great and kid if I could be his deckhand. For the moment, his disposition is excellent. His anger is reserved for another time when he feels crummy. When I finish this memo, I will go rub his feet and temporarily enjoy the moment of closeness, which recently has become a rarity.
Next door there is a screaming child. The blinking light is perpetually calling the nurse. The parents must have taken a break because the grandma is administering Whatever she can to her grandson. Their pain oozes from the walls and I feel selfish relieved that we have our own break.
Our roommate was here only 4 hours. At age 2 he was diagnosed with a rare blood disease. He lacks an enzyme to cleanse his blood. He will spend the rest of his life bi-monthly hospitalized to rejuvenate his blood. This moment, this second, hug someone you know-pass on gratitude for the good things in our lives.
We will make it! We get a break for 2 weeks--NO. TREATMENT except blood work. Since March 10, Chase has had no break. This is his time to Shine. Invites are so very much welcomed and of course, anything to do with fishing is all the better! We await your call..
P.S. A special thanks to our extra helpers this week who really made a difference: Don Healton-driving Chase to labs, Ken Clark- Young Life fishing extravaganza! Donna Semione and Jeannie Lange- hospital stay with Chase plus M.D. visit, Nancy Nimmo and Sharon Dupree for the yummy meals and Grandma Sybil from Tallahassee, Horida-your visit has been a lifesaver!
September 28, 2003
Hi to everyone
There have been so many meaningful experiences, some small, some large and I thought I'd share a few. As you recall, Chase had last week and next week off from chemo. I woke up Monday to go for a jog with Hershey and ran into a woman who had her dog, too. I yelled that Hershey was friendly and we agreed to let them "sniff." My eyes followed the dogs at play and then to her tee shirt She had the "Race for Chase" on. I quickly exclaimed that Chase was my son. She was deeply moved and shared how she had come to be involved due to the Braves baseball team who, in lieu of their coach's gifts had donated their money to Chase. Of course, this brought me to tears as I continued on my run, the tears of gratitude felt good to unload.
On Wednesday, Darryl and Travis Hauk (thank you so much) took Chase on a special trip to Catalina on their state of the art tiara boat. Chase had a blast even though they didn't land any tuna, he was quite impressed. Thank goodness because Thursday we were called at 2:00 PM to go to the hospital for platelet transfusions. It made sense to me now why Chase had been so resistant to getting blood drawn Thursday am. I think he is coming to know when his counts are down. We got the very last bed at CHOC. When we arrived, our roommate was a gregarious 7-year-old bald boy. There were several other sick children visiting and the atmosphere was jolly. Chase quickly shut the curtain and we fell into the silence he has come to require. No TV, no Walkman, Chase just lay quietly, without a complaint, while the units of platelets were administered. I feel sad that we couldn't go a week without the hospital but it won't take away our resolution to take the good with the bad.
Saturday, Bryan and Lisa visited us from "Make-a-Wish foundation. They are ambassadors of goodwill, called dream granters. As we sit chatting, internally I am forced to face the severity of our situation. Bryan shared many choices and examples for Chase.
Privately he shared one very painful story about a female high school Senior who had been given 2 weeks to live. Her wish was to have a prom since she wouldn't make it to her school one. So, they had a prom with 150 guests on a charter boat. Everyone dressed up and she was given a tiara. Her wish had been granted and her life expired. I am grateful for everyday and I hope all of you feel the same.
Tomorrow, Alex from the Jigstop and his fellow fishing friend will take Chase out to fish locally. He is so excited. I plan to go out Thursday and surprise him either on a charter or maybe we'll get a special invite.
Bad chemo is 10/7 so on 10/6 Kathryn, Blake, Chase and I will brave a 6:00 am to 3:00 PM charter. Kathryn and I are enthusiastic but praying for calm seas.
I again thank you for this e-mail opportunity. It keeps me clear on this journey and your support again, is immeasurable!
P.S. Lori surprised me at my office with a personalized inspirational momento. Check it out —it is lovely. Thank you Lori.
P.P.S.S. Another side note, on 9/23, Chase lured another fisherwoman, Grandma Sue Duesler who went on a half-day charter and landed 2 sand bass and a tree fish. Go Grandma Sue!
October 7, 2003
I only cried once today. We checked into the hospital this morning. I walked into the parent room at night and found a mother, legs entwined to her four year old (or so) bald boy. He slept while she sang a healing lullaby. I sat a bit and reflected on this mother and our love during these trying times and as I left, I smiled at her as if to say-"I know you as you know me. Hold on as long as you can-trie love we have will get us through this." The admit went peacefully and Chase slept during chemotherapy. Prior to chemo, Chase asked for a steak. I couldn't deny his special request so I took off to find a rib eye (his personal favorite). After 3 restaurants, each one was met without attaining the beef. Finally, I went to the Olive Garden in Orange and the manager agreed to make Chase a plain 18-ounce T-bone with fries. When I returned, I proudly delivered tiramisu for the staff and steak for my Chase. These days, any requests are met with consideration; well, within reason!
As promised, yesterday Kathryn, Blake, Chase and I took off at 5:00 am upon the Dana Pride Charter to fish. Kathryn and I took Dramamine (just in case) and found ourselves outnumbered by fishermen 27 to 3. Upon departure, the boat hadn't been untied hi the front and with an audience to boot, we poceeded to take out one quarter of the dock. Needless to say, Kathryn and Iglanced at each other with the unspoken thought, "should we abandon ship?" I mean really, what a way to start! Kathryn beat my score; she caught 10 mackerel and 1 bass. I caught 2 mackerel and 1 bass. I blame it on the fact that I was personally baiting my own line while the "princess" had Blake to assist. By the end, however, Kathryn got the bait thing down. We ran into several boils of yellowtail. Chase and Blake, at the precise same moment, caught their first yellowtail of the day. This was in addition to the numerous bass, sculpin, and mackerel already caught. By nightfall, Chase and Blake had landed more yellowtail with Chase again winning the jackpot! I got pictures so keep an eye on the website (Chasecq.com). Chase donated all his jackpot money back to the crew. He said they had worked very hard and it was the right thing to do. My goodness, Chase continues to teach me so much and I am thankful for the lessons.
Barbara Kaprielian and her Chocettes for Chase and Lori Midtsatre walked the CHOC walk-cure for Cancer last weekend. We are so honored you represented Chase. God bless you all.
October 7 (continued)
Chase is very ill today. His nausea has been debilitating. I stopped en route to home after inpatient to buy him a fishing video (his newest diversion when he can't fish) and he asked to wait in the car. When I returned, the bile he had vomited sat in the bowl in his lap. I said to myself, "tomorrow will be better." God willing, he will wake up without the nausea.
Tonight I am drawn to the quote by Aesop; "No act of kindness, no matter how small is ever wasted." I hope you all know how appreciative we are for every single solitaire gesture of love and support.
With love, Kim
PS. Jim Beam-The angel from Wisconsin-We haven't met but your weekly cheerful cards and notes are awesome. We pray for your full recovery from surgery!
Follow-up October 10, 2003
Our doctor called and Chase's labs are great. It lifted his spirits as he begged to go on another charter today (6:00 am to 3:00 PM). Call us crazy but we sent him off. Fishing report for the day will follow.
October 16, 2003
Mary Kathryn, my great 2nd Aunt, died last week. She was 83 and had been married 63 years. I attended her funeral at a beautiful church in San Clemente. By the church attendance, she was greatly loved by many. She was both a saint on earth and now in heaven.
On my way to her service, I did my ran with Hershey, discovered 2 dead rats in the garage traps we set, made Chase his favorite extra large pancake and returned messages.
When I arrived at the funeral, I was pained to see the loss in so many friends and family members. As we rose to sing "Amazing Grace", I knew instantly that I'm not prepared for funerals. I had a flash of Chase's and immediately felt chilled. I came to my senses and quickly practiced cognitive restracturing adding in my mind, "Chase is not going to die, we will beat Rhabdo and any long term effects from this difficult treatment". Some have asked how we appear to get through it. My answer is what was spoken in church and reiterated by a friend; faith, hope and love-the greatest, which is love. All of you would do the same, I promise you, and there is no other option. With that being said, I cried non-stop through the service and looking back today, I'm glad I went but hopefully there won't be anymore for a very long time. It's just too close to home right now.
My phone rang in my car afterward. It was Chase. "Mom, my blood is bad, come take me to the hospital." I went into a survival mode. Make the calls, get my back up for the other boys, check into the oncology floor. Chase was given platelets and transfusions without a complaint. Our thanks again to friends and strangers for your blood donations.
I awoke early Friday a.m. anxiously anticipating our family getaway to San Diego. Tomorrow we would board the USS McCluskey as guests and go out to sea.
We left at 12:15 and at Chase's request stopped at the aquarium. With a few typical teenage jabs, we had a blast. For any of you who have lacked quality time with your significant other and/or kids, take 24 hours away. It's such a boost for your relationships! We took PCH to our hotel at Mission Bay, checked in, relaxed a bit then headed out to the rollercoaster, candy store, then Joe's Crab Shack. We told old funny stories, made fun of ourselves, ate, and laughed. At one point, I looked across at the table of my loved ones, and thought to myself, it's as good as it gets.
We all slept well and at 6:00 am set out for Pier 5, ship #41, The USS McCluskey. We were escorted aboard and met with other guests while being briefed on the agenda. Command Chief Prince (my student at OCC years ago) was quick to make us feel at ease. The hospitality, warmth, personal tour of the ship was extremely impressive- an A++! Unfortunately, the fog delayed us a bit and Chase's health deteriorated. I think I was so engrossed in the ship that I didn't want to take a look at how sickly Chase looked. He complained of a headache, weakness and that he couldn't walk because his legs hurt. We all took an inventory. We realized we'd have to deport. We found Chief Prince who generously took us around to areas of the ship that only special guests see. It was awesome! Ten minutes before the boarding platform was removed, we got off the USS McCluskey. It was 9:00 am. 2 hours of ship time was better than none. Being the optimist, Dan suggested that after Chase's treatment in January maybe we could go again when the ship returns in May. Having appeased the family, we got in the car and went home. It's 7:00 PM and Chase is still asleep. He hasn't eaten a thing and it's obvious we made the right decision. Each day is a new day. Here's to tomorrow.
10/23/03 - 10/26/03
Dan and Chase took off for Catalina and Chase caught 5 Bonita while trolling! They had a fabulous time and returned on 10-26. As you have come to know, Chase begged to go on a Dana Point charter on Monday 10-27. Chase was fishing for 11 hours and caught 2 yellowtail.
November 2, 2003
On Thursday 10-23, Chase again, for the 3rd time this week, found himself back at CHOC for blood. Afterward, Dan and Chase took off for Catarina and Chase caught 5 Bonita while trolluig! They had a fabulous time and returned on 10-26. As you have come to know. Chase begged to go on a Dana Point charter on Monday 10-27. I agreed because Chase reminded me that since Tuesday 10-28 was his inpatient hard chemo, fishing would not be an option for a few days minimum. Chase was fishing for 11 hours and caught 2 yellowtail. As I put him to be early, I reminded myself that my 13-year-old fisherman had a day from heaven but that tomorrow will be far from that Chemo is getting real tough as expected. The atmosphere on the oncology floor sends a non-verbal, ominous feeling and Chase starts vomiting when we get to our room. Our nurse compassionately delivers our "barf bowl." After Chase "lost his breakfast" he takes his meds, which immediately come back up. The nurse quickly states she will retrieve the pills from the bowl of vomit. Chase thinks she's kidding and when he discovers she's serious, he pleads for new meds. As I sift through the vomit, I back him up and tell the nurse, the pills are too soggy. The Pharmacist send new meds which Chase waits an hour and finally keeps them down.
Chemo was delayed by 5 hours because of the prior vomiting. Once chemo is received, Chase dozes off for a couple hours. We are sharing a room with a 14-year-old boy and his mother. We are on week 30 out of 39 treatments. They are on week 9 out of 30. I see myself in the mom-nervous, scared, on the learning curve with cancer, emotional. I get us all pizza and cheese bread and for the moment we pretend it's okay.
I finally fell asleep on the cot and slept restlessly. Chase has the dry heaves all night. His stomach is empty as that chemo starts to move through his cells. On Nov. 11, it' 11 be 8 months since diagnosis. If all goes well, December 30 will be Chase's last chemo-the hardest treatment on that day. God willing, we will bring in the new year without cancer and chemo. What a year to celebrate! 2004 I await you!!
Upon discharge, Chase is vomiting bile. We cancel the physical and occupational therapy appointments but have to see our oncologist Dentist for Chase's current mouth problems due to chemo and radiation. Chase begs me to reschedule and I tell him I can't. He doesn't argue and meekly walks to the Pavilion elevator. Thirty minutes later, we are on our way home. Chase vomits a couple more times in my car and lies down. His vocal chords are miserably weakened. Also, I rely on his eyes which are visibly pained. That's when I say, "Damn Cancer!" Those of you who know me will recall that I had a father who said, "gee whiz, my golly and darn" and a mother who absolutely never cursed raised me; this was out of character for me. Chase looked at me and as I cheeked my rear view mirror, he smiled. This very moment our feelings align and I don't apologize for my outburst.
On 10/30/03 Dan decided to get Chase out of the house to sleep on our boat. He's felt so lousy that I am pleased when they leave. I'm-also a bit worried about Halloween- When most kids are having a blast, Chase will be alone and it is at these times, I'm especially saddened. Cancer breeds isolation and sometimes it is especially heart breaking. Dan called on 10-31 to say they had decided to go out for an hour or so at the "267" fishing location. The next time I get the phone, not more than one half hour later, it's Chase stating he landed 3 yellowtail-the biggest being 25 Ibs. They were coming home with 4 yellowtail (Dan caught the last) and I called some friends. Everyone raved over the meal and Chase looked so proud. Yes, indeed, a Happy Halloween. Thanks to the Hile family for the dinners. It really helped the entire family out!
Heads up! Chase turns 14 on December 20. If blood counts are good we will go to Big Bear Dec. 19-24. We have a cabin at the foot of Bear Mountain, which we are renting. Chase intends to fish off the shore and the other boys will snowboard. If you're in Big Bear, Tplan on a celebration on the 20th for Chase. Til keep you posted.
January 2004, will be our time to do 3 weeks of "evaluation". Those are the tests to tell us if the cancer has spread. Your prayers are so helpful. God and fishing has kept us going. Your friendships and acts of kindness are immeasurable.
November 2 (continued)
P.S.I found this on Chase's computer screensaver:
"It's hard to explain- It's like when you were 9 years old and it's the day before your birthday. You can't sleep, can't focus, all you can think about is what kind of surprise you're in store for. It's total excitement, anxiety and curiosity all in one. It's the same way I feel the day before I go fishing! By Ben Secrest Shimano
Tonight I say a Prayer of gratitude. Thank you God for fishing. It has saved my boy and ultimately me. You have given us a most precious gift, and in your name God, I thank you and I love you.
November 21, 2003 a.m
2 weeks at a glance - November 21, 2003 10:00 am
I'm sitting in the Oncologist's office stunned at our recent report. Chase has been diagnosed with shingles, which is extremely dangerous for cancer patients because of their immunity deficiencies. Rather than being admitted to the oncology floor, we will be admitted to isolation on the fourth floor. Chase asks me to stop crying so Tarn writingto all of you to help distract my sadness. Chemo will not be able to be administered for several days/weeks. After learning on Tuesday Chase's counts were so law and we couldn't be transfused because his bone marrow isn't responding well after so many months of treatment, I felt low. I anticipated the blood drawn on Thursday and we were told it was good enough to give chemo but then found out, there weren't any hospital beds available. Today not only scares me but also forces us to face entering the New Year still with chemo. My body aches for an end and I can only imagine how Chase feels. When the doctor leaves, Chase asks if we can just stop now-no more Chemo. I wish I could grab him up and run away. I guess we all have those days but today is exceptionally difficult.
The last couple weeks we were at the hospital 3 times per week for transfusions and platelets. Thanks to Dust Andersen-we got his platelets! Thanks also to Julie Hile, Kathryn Holden, Sandra Wade, Jody Barber and Sharon Dupree for the dmners. Thanks again for blood-it's a lifesaver.
We'll be in the hospital for several days on antibiotics. We will slip into our first bout with illness on top of cancer and we will pray for a better day soon.
Love to you all-Kim
November 21, 2003
It's Thanksgiving night around 9:00 p.m. I woke up this morning, chatted with Dan, and we went on our jog. I told Dan this is my favorite weather and I couldn't wait for the day - friends, family, good food and no work. We planned on taking our Christmas photo on the boat without a photographer in mind. We figured we'd ask someone at Dana Point Harbor to do us a photo "favor." The day's plans changed quickly as Cody, age 10, came down with the chicken pox. He must have got them from Chase' s shingles even though Cody was vaccinated against Chicken pox. Barb Palermo wanted her boys to be exposed so we went to the Duesler's reunion at Dad and Skip's after leaving Cody with Mikey Palermo. Dan came down with the flu and we never did get to our Christmas photos. Call us bad luck losers but I'll stay tonight thankful.
I am thankful for so much, but most of all- the goodness in people. If you don't believe hi it, I hope you won't wait for something horrid to happen. Most people are good, loving, and unconditional with their support.
Thank you God for allowing the one son I have out of four to be the strongest to fight cancer. Thank you God that he can obsess over fishing and distract him from the pains of the treatment. These next few weeks will be extremely hard since Chase's body is so weakened by chemo. Thank you God Chase laughed with me tonight when we watched "Bruce Almighty." I would give my life over to spend more time listening to Chase laugh. We will lose time over the last week's delays in Chase's chemo treatment. My "anal" self has let go. Tuesday, December 2, we will do hard chemo at the hospital and play it by ear. God willing, whatever else may come, we will be in Big Bear 12/19-12/24 and we will celebrate chase's 14th birthday at the Bowling alley December 20-All are welcome!
To all of you who have been there in so many ways, I send you my personal blessings. We're in for a rough 6-8 weeks and then let the celebration begin.
With love, hope and thanks, Kim and family
To the following angels: Jeannie Lang and JoaynCurtin-Yummy dinner! Donna and Nick- your special hospital visit. Dr. Jim Bean- wherever you are, you're consistent cards of encouragement are so very uplifting. We extend our invite to come meet Ghase and stay with us in sunny California! Katherine Sternfield - for making our Christmas photo a reality! George DeYoung - Thanks for getting Chase out of his post-shingles slump and taking him fishing all day! You are awesome! Hopefully your car being towed, ticketed, and repairs cited won't make you gun (fish) shy in the future!! We love and thank you! Ginger Geidt, Shannon Mimm and Cindy Hinderman, What awesome Santa helpers!
December 8, 2003
Chemo resumes tomorrow-Chase also needs platelets and will meet with his dental oncologist. Last week was tough at the hospital. Chase really wants to stop treatment. The schedule is as follows: chemo 12/9, 12/16, 12/30 (inpatient) and 1/20/04 (inpatient). Due to Chase's lessened physical capacity, we will reschedule his 6-day celebration to PaoU's Italian Restaurant 40821 Village Drive (909) 866-2020 (Corner of Village and Pine Knot) Dec. 20, at 4:30 p.m. Big Bear. Rather than bowl, the kids will play video games after dinner.
Mike Gardner and his lovely wife visited Chase for his chemo last week. Mike and his wife have been acutely ill and he gave us such an uplifting visit at the hospital. As the fisherman guru, he mesmerized us with his fish tales, shared his fishing video and book. We began treatment in fishing bliss. Thank you, Gardners!
Since then, Chase got MD approval to go to Catalina with Dan. I was mortified but relented when Dan advised we let the MD decide on the trip. Chase caught Bonita but it was a quiet fishing trip. Just to be oh the water is a Godsend.
Thanks again to our great meal givers - Kathryn, Julie Hile, Sherry Robinson, and Pam Duesler. To my special helpers who go the extra mile -you give me air to breathe.
I enter the holiday season with confidence and gratefulness. Even my patients seem to sense an air of positive energy in their work. I laugh and cry everyday. Do you?
Take a moment today to accept my gratitude and appreciation for your "gifts". Tracy Browne- your gift of getting me out was a true delight. I think I'm hooked on Rascal Flatts!
The end of chemo is near. I will never ever forget this year. My team, which's you all, has taught me to play, to practice and to fight. My confidence is a direct result of your support.
Come January 21, 2004, I will celebrate... Love, Kim
December 12, 2003
You may recall a few months ago, the news that my Uncle Bob was diagnosed with inoperable throat cancer. In respect for his confidentiality, I have not shared anything about his difficult treatment with chemo and radiation. Miracles happen! Yesterday, his doctors discovered the tumor is G-O-N-E. Thank you God and thank you Uncle Bob for fighting the fight! I love you dearly-
Chase had platelet transfusions twice this week. I got home at 12:30 a.m. and Chase quickly slipped into bed. He's already planning a skiff trip when treatment is done. He accepted an invitation to go to a party tonight. I'm nervous with all the flu going around but I'm elated he accepted. (Never mind, after showering and changing he decided he couldn't go-he's not ready to have people see him. DARN...
Chasin Dreams-Livin' Life-our 26' Wellcraft goes on sale today for $26,500. It has a trailer, GPS, live bait tank, fuel flow meter, rod holders, new canvas cover and much more. Call Dan ASAP at 949-302-1515. It's a wonderful boat with a slip in Dana Point.
My love to you all! Kim
December 19, 2003
Holiday Update - Happy Holidays
Holiday Update Happy Holidays
Monday AM, I woke up with my sense of humor. Whatever will be, will be. Kyle started day one at work at Costco photo lab and came down with that horrible flu. Cody fell and got a minor concussion and fat lip. Dan and Chase left for the hospital with a bed available only at 9:00 PM. They got home at 4:20 AM to leave again at 8:00 AM for chemo. I smiled and renamed our family, "Calamity Quickels". Cheryl Moore delivered dinner and being that there were absentee family members, Corey and I ate double. Thanks Cheryl!
Tuesday, ban and Chase took possession of our 32' Sportsf isher Luhrs boat. They are so excited to be able to travel longer distances (i.e., Mexico) and thank goodness Quickel Paving is doing well. Reminder, our 26' Wellcraft is for sale.
Ron Jacobsen delivered the "Race for Chase" monies. All money will be in a trust for Chase's future and a portion donated to the rhabdomosarcoma cure. On a final appreciative note, God Bless and thank you all.
Today I went to my favorite deli, "Daffys." There was an old man who's a regular. I heard he had recently lost his wife. He is very much a weak, ill man whose life must be limited. I bought a gift certificate and gave it to him. He stood and gave me a hug. The man reminded me of the way Chase holds me when he is weak and ill. The last two nights he has asked me to sleep with him. We cuddled and Chase took off his cap. I rubbed his baldhead and he relished in our closeness.
When I left Daffy's, I cried over all the sadness and gladness in the world. I thought to myself, play it forward really works.
All being what it is, this may have been my most challenging year. My faith and your community support keeps me very optimistic and remember, where there's love, there is life...
P.S. A special thank you to:
The Gardners for their special visit with stories and time devoted to Chase. The Delesandro family- for 10 months of perpetual support and gift giving. To Erin Bender Stone and the United Methodist Church youth group- your birthday gifts to Chase are awesome.
My love to all,
Merry Christmas and the best to you in 2004.
January 4, 2004
Happy New Year!
The day is almost over and I sit to reflect on the events past and the ones yet to come.
As a quick re-cap: we went to Big Bear on 12/19. Chase and Blake caught trout and afterward, Chase told me he needed to come home. We celebrated at paoli's with a party of 20 for Chase's 14th birthday. Several people drove up just for Chase: Thank you to the Al-Ayoubi family for their gifts, ride home for Chase, and friendship, Sharon and Gary- thank you, you lovebirds! Lori Midsatre-Thank you: the digital under H20 camera, your presence, your volunteerism to CHOC and Chase (32 degree weather) and being bodyguard at the "love shack", my cousin Drake and stepsister Sheelah- for your continual support, and to Kathryn Holden - you are a Godsend! Chase left after 2 days in Big Bear. He felt sick. We stayed to allow the other boys a time to enjoy the snow. On December 23, Mamma Bear got sick for the first time in 10 years. Thank God for tamiflu and Z PAC. We came down the mountain on December 24th and Grandma Sue hosted a lovely Christmas dinner. At early Christmas a.m., we all 6 rose to a glorious celebration.
Families had gifted us so much. The Robinson's surprised us with a morning visit of complete overindulgence. Thank you so much! The Wades had picked Chase as their annual special gifted chosen one and each child wrote a moving note, as well as a monetary contribution. (Thank you, thank you). The Geidt took Corey on a great snow trip and the Mimms spoiled us too! People sent special cards, gifts and acknowledgements. All are so appreciated.
At 8:00 am, December 20, Chase and I got the call. We were routed for chemo at 8:15 am. Chase's ANC blood was 254. No chemo for 1 week-Chase grinned as I grimaced for I knew with his blood counts so low, that his completion of chemo is off set. I called O.C.C. to take a further leave of absence from teaching.
Carri Anderson has breast cancer and I pray for her, Dusty and their young boys. May we reciprocate your kindness with anything that you need during this difficult time.
I read the newspaper today and found Chase's story as one of the 2003 major events. As I read it over and over, I said to myself, "how surreal it is to have your son's story in the local news". It's still like a dream/nightmare...
Yesterday, I found out Sande Birkenshaw's dad passed away. I recall a kind, funnyman who eventually I had hoped setting my mom up with. It made me cry. The accident occurred and a second later, life changed forever.
I think about all the sick, sad, unhealthy people in the world. I wish for all of you to stop, slow down, smell the roses, make sacrifices for the people you love. Most of all, I recommend effort. Try to be a better friend, lover, sister, son, wife, husband, mother, grandparent or neighbor. With your motivation, good things will happen. God willing your prayers will save my boy and remember, when the chemo is done, and the tests are clear.. .we will celebrate like no other.
Wishing you well in 2004.
January 6, 2004
I am excited today to be at CHOC to know by tomorrow we will have one more chemo and be done. The anticipation of 1/27/04 with the extended tests beginning on 1/29 are at best, overwhelming. Today at the hospital for chemo we shared a room with a hemophiliac who slept most of the day away. He had no family or visitors whatsoever. When he awoke, the curtain between our beds was drawn, and I was taken by his laughter at the TV show we shared. Chase slept through his chemo and I was grateful. For the first time ever, I was happy to have conversation with our ''roommate''. He had decided to move rooms to our next door neighbor who also had no visitors. The flu is at an epidemic level so no visitors (other than family) are allowed. Chase went downstairs earlier to visit with Captain Mike Gardner to discuss "fish" and then got chemo. Our "roommate" refused visitors - the nurses say he won't even let his mother visit. He deals with his blood disorder solo.
Tonight Chase is in a rare mood of affection. I rub his feet and I am allowed (only momentarily) to remove his hat to rub his head. He is vomiting profusely. His body, mind, and soul are so done with this chemo and so am I. He refuses Atavan to help the nausea and tonight I betray his wishes. I can't take it- the nurse agrees and it is administered. God willing... Chase will sleep tonight.
Chase had a rough night. The Atavan makes his nausea lessened but he loses bladder control and I found my self up 3 times changing bedding.
By mid a.m. Chase continued with dry heaves. The nurse practioner decided to keep us longer. Chase pleaded to go home, as did I. There was agreement from the staff if Chase could keep fluids down "mom, I never had to do this, let's go". We took the fluid, and one old timer whispered after Chase gagged on a few sips, "Toss it- they'll never know". Chase smiled as we dumped the fluid and pretended he drank it. Then we slipped put of that hospital before they could blink an eye. We left the empty cup next to the bed, our "proof we'd been compliant.
Chase is in his room, grateful for the solitude of his own bed. I eagerly await our last chemo on January 27th. Could it get here any sooner?
We only have 2 units of blood remaining. I anticpiate transfusions for the next 6 weeks. Any blood donations are so appreciated. Call Maggie directly at CHOC blood donor services.
God Bless all of you and thanks again for your support-
January 27, 2004
Thank you God for this day! I said it out loud as I jogged up my big hill this morning. When the tears came, I let it out and felt myself out of control. It was like a crashing wave-the emotions so strong and unrelenting. A groan escaped my lips and I looked around for fear a passerby might notice me. It was still dark outside when I put on my jogging shoes and Dan mumbled in his sleep that I must be crazy. Today I do feel out of my mind. I'm nervous, scared and hyper and excited all at the same time. Thank you God for this day - the end is 24 hours away. I've asked Chase if I can scream in the halls when this is over. He pleads to me to contain myself. I agree and privately promise myself there will be a time to let loose.
My sleep was restless. I had a repetitive dream the Chase and I arrived at the hospital for our last chemo and the beds were full. We were sent to a floor that was packed with sick people. Chase was on a gurney, which I kept moving only to find us face to face with yet, another sickly person. Eight hours passed without any medial attention and everyone was too busy to get to us. I finally screamed that this was our last chemo and we had waited long enough. No one would listen and I felt this panic. Then, I'd wake up, stir a bit, fall back asleep and the dream would begin all over again. What a nightmare!
Chase was sick with diarrhea and vomiting for 10 days following his last chemo. We're prepared for a rough ride and then the uphill stage of recovery. Tests begin 1/29/04, which we fully expect to be clear. Like a 9-month pregnant woman who's been told she has another 3 months to go, we have been "over" this chemo treatment for a very, very long time. But as you know, with alveolar rhabdomyosarcomea we had to go aggressive and follow treatment protocol.
My other boys have been troopers. Friends, family, neighbors, and strangers have in so many ways been our lifestring. In particular, the meals provided by Jeannie, Sandra, Ellen, Ellen, Julie, Donna, Sharon and Sherry really were so nourishing and helpful. In addition, through Ellen Small's angelic gesture, Chase met Drew Lawler, the owner and editor of Pacific Coast Sportfishing magazine and Dan and Chase went fishing all day with Drew and his crew. Check out the next magazine for the "hook up" news. George De Young took Chase to the Long Beach boat show and they had a blast. The Ferguson kids sold lemonade and sent Chase the $ 15.00 they earned. Bill Lee subtly urged Cody (who had previously lost his baseball enthusiasm) to play and he is! Hooray! Michael and Blake have put aside lately some special time to be with Chase, which truly has been the greatest gift of all.
I said to Chase this morning en route to the hospital, if cancer has taught us anything it's to believe in the goodness of people. He agreed with me wholeheartedly.
I guess that's how I'll end today. You've all been so concerned, loving and giving and I love you. Thank you again, God... for this day.
January 28, 2004
Lori Midtsatre had this delivered to Chase at CHOC yesterday. I think it says it all. Again I thank God for yesterday and Lori, I thank God for you.
Today at CHOC, more time to pray
Tomorrow is a brand new day
A day of joy, a day of cheer
To put behind you all the fear
A boy who’s found his strength in fishing
The quiet times that he spent wishing
Wishing he could do it all
Like go to movies and still play ball
But just like ball, life throws us curves
And brings him what no child deserves
So lets give thanks for the gift of love
And thank the good lord up above
For the human spirit and the strength to fight
To look ahead and see the light
The light of life for one young boy
And for a family, the light called joy
The light that sparkles from Moms eye
The light from friends, always nearby
The light that comes from Dads big grin
The light that shines from deep within
Tomorrow is a brand new day
The light will shine along the way
Where faith and hope and love create
And soon we will all celebrate
We’ll smile, rejoice and send a wish
To a boy who really loves to fish
Kim and Chase,
Sometimes we feel that we are all alone, as life brings us challenges to overcome and hardships to bear. But when we least expect it, help can appear. It may be a kind word from a stranger or a phone call at just the right time, and we are suddenly surrounded with the loving grace of God. Miracles happen every day because angels are everywhere.
February 7, 2004
CHASE CRAWFORD-QUICKEL is cancer free!
Hallelujah!! Thanks be to God!
Your prayers, love and support have gotten us through one heck of a year.
I can't stop crying and finally they are tears of joy. Thank you, thank you, thank you...
Do a little dance
Make a little love
Get down tonight!
Let the celebration begin.
Signing off for now. I'll write again when I'm more grounded. People say that things will now be able to get back to "normal".
Our lives will never be "normal" again and you know what, I think that's a good thing. The goodness of people has changed all of us forever.
With all my love and gratitude,
February 17, 2004
To all of you:
We're still in celebration mode...Chase is coming around with more enthusiasm and spirits for the future. We will do weekly blood tests as well as MRI and Catscans every three months for two years. Nothing is worth complaining about these days-we are cancer free and done with chemo, life is good and you are all WONDERFUL!
May 19, 2004
It’s a new year for us! Halleluiah! We are in remission and I feel like I walk lighter, I laugh more ferociously, I dare more, I expect less, I take more time to be at a kid's baseball game rather than work, I have less tolerance for people who whine, and I cry more often-especially for those who have gone through a recent traumatic life event. Suicide, cancer, loss of life through other means, mean people who hurt the ones they love; I tell you, after being through the year we've had, I have become a
Let's update all of you on Chase. He has completed recent MRI and cat scans, as well as M.D. evaluations and abdominal ultrasound. His grades are suffering, his ear canal has collapsed which will require surgery this summer( I am contemplating sending him back to the Mayo Clinic), and he has suffered eye deterioration in the right eye(due to the radiation) and has developed near sightedness. He will require glasses which we will prolong due to his self-consciousness currently. The ear surgeon specialist told Chase on Monday that he cannot have plastic surgery on his ear due to the high risk of facial paralysis. The good news: no tumor. The bad news:he may have other issues which we will find out by the end of this week. I say to people who ask about Chase, "Yes, we are in remission. For the next 2 years, he will be checked every 3 months." What I really want to say is that this is the ride of my life and we are just beginning to learn the repercussions from this radical treatment that basically extended his life, God willing, for a very long time.
Love to you all, Kim, Dan and the "team."
July 28, 2004
To Our Loved Ones,
Long time no talk! Happy summer 2004! What a better year…We kicked it off with our Make A Wish vacation to Kona. Fishing was great, our spirits renewed, and we all caught fish! Chase’s prize catches included two marlin and a huge Dorado. Our family took this much-needed vacation to recoup from this last year of treatment. We found the beauty of Hawaii very calming and therapeutic.
Recently, Chase and I flew to the Mayo Clinic to have his collapsed ear corrected and to have plastic surgery. The team of doctors took thigh skin grafts to build the ear canal and implanted collagen pads to pack the side of the face indented. In addition, Chase’s ear was reattached. Surgeries appear to be successful! Chase was admitted to the pediatric floor and vomited for six hours. When he finally slept, we all said a prayer.
Chase will enter his freshman year at Aliso Niguel High School; thanks to you and your prayers we are moving forward cancer-free. He will be checked every other month and please assume no news is good news. We are eternally grateful to all and send our love and thanks to each and every one of you.
Love, Kim and family
September 10, 2004
Most Recent News:
Chase entered the summer with grandiose fishing plans and a head of hair. Mayo Clinic provided the thigh skin grafts to build a new ear canal and with plastic surgery reconnect Chase's ear. I cried his first day of school (8-25-04) like so many other moms (especially kindergarten), wishing him well and praying kids would be good to him. So far, so good.
On 9-4-04 Chase had a bad relapse of shingles. Thus, he has missed one week of school and time and God willing, we'll see when he returns. The worse is seeing him in pain and you all know he's had his share. Shingles is brutal.
Today Chase went for his belated MRI/CAT Scan. We both hate the hospital.. He vomited after one fourth teaspoon of the barium he had to take. He still had 16 more ounces to go. We cheated a bit and I let him intermittently drink juice to throw it back. We got out of there in less than five hours and proceeded to Dr. McGavero's office for spacers. Chase's right side of his mouth has completely deteriorated so that braces could not implant themselves. Therefore, we are attempting mega-fluoride treatments to rebuild his teeth. Dr. McGavero has donated all treatment services and we applaud his generosity.
Today, after all the exams, I got Chase's favorite dinner to go and we headed home. I promised him no more hospitals until next MRI/CAT/ etc. in Nov/Dec. When I got home there was an alarming message from Chase's oncologist stating the radiologist from today had reported suspicious concern over Chase's right ear-at the site of the previous tumor. I dropped, cried, and called my support people. God willing, this is not a reoccurrence. Chase cannot get rhabdo again, nor do we feel we can survive a relapse. Please add Chase again to your prayers and, hopefully, this memo finds all of you healthy, and obviously dearly loved and appreciated.
We'll keep you posted. We'll do an all inclusive pet scan next week to determine everything and our M.D. will do a team consult on Tuesday of next week.
Love from Kim and family