Alese Coco's Journey through Hodgkins Disease

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Saturday, March 31, 2007

UCLA - Day 1 …

I went to UCLA on Thursday and met with Kristen… She was one of my nurse’s with my first transplant team in 2002, since then, she’s become a Nurse Practitioner and she's part of Dr. Moore’s staff.

My platelets were low, 26,000 on Thursday and they infused me. Low platelets are result of the first cycle of chemotherapy.

I go back on Monday for another blood test, I was supposed to start the second cycle on Monday, but we’re going to put it off until Wednesday. It’s a three day infusion and I have a choice of staying at UCLA, or receiving the chemo on a out patient basis… I’m going to do the out patient, there is no place better to sleep at night then my own bed.

Dr. O has been talking to Kristen and Dr. Moore, everyone is on the same page and I’m really happy with how things are going. This was a much, much easier transition then I ever expected.

I feel good, I’m just weak, but I’m going to church on Sunday morning.

Thank you for your prayers, and have a great weekend..

Thank you Lord for everything working out with UCLA. I feel so blessed to have Dr. O and Dr. Moore taking care of me. Continue to give them wisdom in treating me and I pray this cancer will be resolved from my body. Thank you for all you have done in my life and I thank you in advance for all you are going to do. I praise your holy name. Amen

Fight 2 Win,

-Alese

Thursday, March 29, 2007

Decision Process Complete….

I’m going to continue my treatment and stem cell transplant at UCLA in Westwood…

This was a difficult decision and my parents and I talked and prayed about this over the last few days. I wanted certain things to happen smoothly if this transistion was going to take place and thankfully everything worked out perfect.

I’ll give details in a minute, but first, I want to say thank you to Dr. Leslie Popplewell and Dr. Mark Krischbaum at City of Hope for treating me for the last nine months, I’ve appreciated your kindness, bedside manner and professionalism. Thank you both.

In 2002, I had a stem cell transplant in the Pedricatic Oncology Department at UCLA under the care of Dr. Ted Moore. My conditions for returning to UCLA was two fold. First, I would be under the care of Dr. Moore and even though I’m not a pedricatic patient, they made an exception to treat me. Second, Dr. O’Connor would lead the team and have the last say for any and all treatment. My parents introduced Dr. Moore and Dr. O via a teleconference and they agreed to work together for my benefit. So far, this transistion has been seemless and all the pieces have fallen together perfectly.

I was at UCLA this morning for blood work and I will receive my second cycle of chemotheray at UCLA beginning Monday morning. In the near future, they will havest my stem cells and I will begin conditioning therapy. I’m not sure when the transplant will take place, I’m guessing three to six months from now.

Father, thank you that even in the midst of this storm, I have total peace in my life. I thank you Father for the gift of life and love and support of so many friends and family. Lord, I rest comfortably on your shoulders as we walk through this journey together and Lord, I’m never going to change the seating arrangements.

Right now, I feel okay, I still cannot walk very far, but I’m getting better and I’m pushing myself harder everyday. I’ll be back in New York to see Dr. O towards the end of April I’m excited that my energies are refocued in the right direction.

Thank you for your continued prayers.


Fight 2 Win,

-Alese

Wednesday, March 28, 2007

Oh… My… Goodness…

Thank GOD… After spending what seemed like eternity in ICU, I’m finally home… I need my family and Lola needs her Mama.

I woke up Wednesday morning March 14th and my Mom and I went to City of Hope to have a Hickman catheter installed. They put me under, after that, the last two weeks have been a complete blur.

I remember little of the first week in ICU; I was on a ventilator and was heavily sedated. I remember the first night and my Mom and Pastor Jason were with me and Pastor Jason read the 23rd Psalm to me, I remember how much peace that gave me. There were times that I felt more conscious then others, or I felt some type of consciousness, I would just tell myself “Fight Alese, Fight this Alese and do not give up.” At several moments, I knew I was near death and I told myself not to quit over and over again.

Both times, I woke up from the ventilator my Dad was standing at the end of the bed gently holding my feet… Just before they removed the tube from your mouth and throat you’re fully, fully awake and I’m looking around the room unable to talk. Dad looked at me and said, “If you can hear me, blink your eyes.” I started blinking my eyes a mile a minute; he told me what they were going to do and tried to sooth my anxiety with reassuring words. It did not help, not even close, not three miles close! I was not happy.

When I asked my parents what happened they told me they’d tell me later. I’ve had HD five and half years and honestly, I’ve seen my parents really scared twice. The first was when originally diagnosed, which initially was emotional for our whole family. The second was this past week, they were not emotional, but the look in their eyes and on their face could fill chapters. I figured whatever happened was not good and initially I thought it was HD related, but Monday morning, my Mom told me the entire story in detail and how the surgeon had made a mistake and punctured a vein when he was installing the Hickman.

I want to thank everyone who prayed for me over the last two weeks and the many Churches and Synagogues that took time out of their Saturday and Sunday services to pray for me, I am humbled beyond words that I can write and I’m moved by the unconditional love and the concern of so many people.

I get treated again Monday, Tuesday and Wednesday of next week. My parents and I are making some big decisions in the next few days and I request your prayers for wisdom in making sound choices. I’ll share them with you as things unfold and final conformations are complete.

God is doing something special and its much bigger then the battle that I’m currently waging… I feel this in the depths of my soul.

Lord, thank you for sparing my life and thank you for all the people who came to you in prayer on my behalf. Please Lord, watch over all of them and their families, and please let all of our lives exalt you.

Thank you again for all of your prayers, I am so blessed.

Fight 2 Win,

-Alese

Tuesday, March 27, 2007

She’s Home…

Alese was released from City of Hope late this afternoon…

We had Alese’s favorite meal this evening, Grandma Coco’s macaroni & cheese. Alese mustered enough strength to sit at the table and create a phenomenal batch of her famous garlic cheese bread.

Our friend, Eric Lassiter is town on business from the east coast and was able to join us for dinner, it was a great way to welcome her home, and a fun, but early evening was enjoyed by all.

She’s sleeping comfortably right now, Lola is snuggling her and has been by her side since the moment she came in the house.

She’s weak and has experienced atrophy in her legs caused by lying in bed for the last 12 days. We’re going to get her moving in the morning and start taking small walks around in the house and hopefully get her outside in the coming days.

Father, we thank you for bringing Alese home to our family, we are so blessed by her presents, her courage, grace and wisdom. Lord, we ask that you continue to heal her body. We thank you for this miracle.

We ask for your continued prayers, this is a long road and she begins her second cycle of chemotherapy Monday morning.


The Coco’s

Monday, March 26, 2007

Out of I.C.U….

Alese was moved from ICU this evening around 7:00 p.m.

She is scheduled to receive chemotherapy again on Saturday, Sunday and Monday. They’ve been monitoring her platelets very carefully since her last chemotherapy and infused her anytime her platelets have dropped below 50.000.

Although she looks great and feels good, we’re not sure when they’re going to release her before the next cycle.

She’s eating well and had second helpings of chicken parmesan tonight.

Lord, thank you for Alese’s continued improvement and allowing her to be moved from ICU. We’re so grateful for all that you have provided over the last twelve days and the miracle that we witnessed by your hand. Please guide our decision process as Alese continues treatment and she prepares for stem cell transplant in the coming months.

Blessings,

The Coco’s

Sunday, March 25, 2007

The Picture Worth A Thousand Words...

Hospital issued gown - $25.00

11 days in I.C.U - $550,000.00 (no exaggeration)

Watching Alese sit up in bed and eat dinner - PRICELESS

For everyday life there is Jesus Christ, we trust in Him.


Today started out good and only got better as time passed. A little after noon, she wanted to get out of bed and go to the bathroom and she walked to and from the bathroom.

Shortly after this picture was taken this evening the oxygen tubes were removed.

She looks good, feels good, breathing on her own and is as fiery as ever. Our assumption is they will move her to a regular room tomorrow morning. At this time, we don't know when she's going to be released to come home.

We're grateful to God that she's improved so quickly, considering Friday afternoon they were concerned she was going to have to go back on the ventilator. We are astonished, amazed and grateful. We are elated that so many had the chance to witness this first hand and share this miracle with us.

Thank you for all your prayers and support over the last eleven days. Our focus will be redirected back to treating the Hodgkin's Lymphoma and hopefully this miracle will continue, and she will be cured.

Alese will begin making journal entries in the next day or two.

Lords blessing on you all,

The Coco's

Saturday, March 24, 2007

Improvement…

Doctors feel Alese has shown improvement today over yesterday…

Her chest x-ray looked better and her breathing was not as laborious compared to yesterday. She’s still receiving 35% oxygen delivered through a mask that she wears 24/7.

She slept very good last night and rested comfortable all day today, and the rest of her vital signs are stable.

This evening our entire family met at the hospital and we brought Alese her favorite meal… Beer chicken, mashed potatoes and garlic bread. She sat up and ate for the first time in ten days.

Tomorrow night, Alese requested her Mom’s Chicken McNuggets (small pieces of chicken rolled in Italian bread crumbs and baked) served with fresh vegetables.

Please continue to pray for improvements to continue and that she’ll be transferred out of ICU in the coming days.

We’re grateful for all your support, we’re trying to return as much e-mail as possible, if we have not gotten back to you yet, we will.

Father we thank you for the answered prayer and that Alese did not have to be put back on a ventilator. We thank you for her improvement from yesterday. How wonderful it is that you care for our every need and listen to the cries of your people. We ask you to touch Alese’s life and fill her with your peace and keep her from further suffering. Amen.

The Coco’s

Friday, March 23, 2007

I.C.U. – Day 9

It’s hard to believe this much time has passed…This has been a roller coaster ride filled with few peaks and far too many valleys.

As of now, she's still receiving oxygen and the problem she’s been experiencing with her lungs and breathing persists.

Earlier in the week, she was improving each day and then on Wednesday things stabilized. Unfortunately, things stabilized too early and doctors are working feverishly to figure out why positive progress has stalled. It could be a multitude of things, but at this moment, we have no definitive answers.

Over the last two days she’s alternated taking steps forward and backwards. A few minutes ago, doctors told us she’s a step away from going back on a ventilator.

Father, please give her physicians wisdom on how to effectively treat Alese. Please open up her airways and allow her to breathe freely and on her own, please grant Alese the physical and emotional strength to persevere. Please continue to mold, shape and guide her life as it brings pleasure to you.

We request your continued prayers. We'll update this site as information becomes available.

The Coco’s

Thursday, March 22, 2007

Breathing Problems Persist….

Alese remains in ICU and the breathing problems she’s experienced have become increasingly concerning.

For the last several days, she’s been showing improvement on a daily basis. However, today she’s appeared to take a step backwards as her breathing has become more labored and her heart rate, and blood pressure have increased.

We request your continued prayers,

The Coco’s .

Wednesday, March 21, 2007

Another Good Day...

Alese is breathing better and has become less dependent on oxygen, her lungs still have a little fluid in them. Dr O. told us yesterday that her revovery will not be overnight and it will be several weeks until she feels some normality. She is still very weak from the trauma of this surgery.

The catheter was removed today and she was started on a liquid diet. Hopefully, she'll put on some much needed weight to her 115 pound frame.

She finished her first cycle of chemotherpay this evening, so far, she's tolerated it well. This will be the last chemo she'll have for at least 10 days. Doctors expect to see a dip in her blood numbers over the next week, but as soon as the counts return, she'll recieve another cycle. She asked the doctor when she could go home? Dr. Popplewell kind of laughed and said "Lets get you out of ICU first."

Since she's been awake, we've been moved by the smallest things. Alese's little cough, watching her drink water from a paper cup, listening to the sound of ice cubes being crunched in her mouth. Most of all, listening to her precious voice fill the air. We thought we were going to be planning a funeral, instead we're planing on taking her home.

Father, we thank you for these daily improvements we're seeing in Alese, please continue to heal her body, protect her from any further infection and please Lord, keep her from enduring further suffering.

We request your continued prayers for Alese, along with Paul and myself, we are both operating on very, very little sleep.

Kathy

Tuesday, March 20, 2007

Still In ICU...

Alese remains in ICU, she’s has some fluid in her lungs and they’re trying to figure out why.

Please pray her breathing will return to normal and that she’ll become strong enough to be moved out of ICU.

We’re still in awe of the events in the several day's, we have seen God move in ways we have never seen before. There is no question that this is a very difficult time, but if we recognize the positive and celebrate both large and small successes we encounter throughout this journey, which enables us to keep our eyes on the glass being half full.

Thank you Father for giving us hope in our darkest hour. You're a God of miracles and we thank your unconditional love and unmerited favor.

Thank you for your continued prayer and support.


The Coco’s

Monday, March 19, 2007

Amazing…

Today was a great day…

Along with the chest tube being removed, Alese was removed from the ventilator this morning; both tasks were pain free for her and her progress continues to amaze everyone, including COH staff. Her first words were to the nurse after they removed the tube from her throat were “Thank you.”

She’s breathing on her own; she’s talkative and as fiery as ever.

Late this afternoon, they gave her a round of chemotherapy and if she continues to progress at this pace, they will take her out of ICU tomorrow and release her to come home Thursday or Friday.

At this point, we have not told her what transpired; she asked what day it was and when we told her “Monday” - she asked “What happened?” We told her that after our own heart rates and blood pressure returned to normal; we’d share the story with her. She smiled and said “Whenever you’re ready.” Thankfully, she has no memory of this entire event.

Father, we thank you for the mercy you’ve shown Alese and our family. We thank you for sparing her pain and discomfort over the last 96 hours. We thank you for answered prayer from so many who love you and walk with you. Lord, as Alese rests in your arms, may your peace continue to encapsulate her life and your joy overflow from her heart.

Thank you for your prayers, we believe with all of our heart, she would not be here without so many faithful praying. Thank you. Please continue to pray for Alese as she undergoes conditioning chemotherapy as she prepares for this stem cell transplant..


Blessings,

The Coco’s

Sunday, March 18, 2007

We Believe In Miracles…

First and most important, we thank God for answered prayer and we thank everyone around the world who has been praying for Alese. Thank you.

We cannot really put the last 96 hours into words; it’s probably as close to hell on earth that we’ve ever come.

On Thursday, doctors told us that the blood clots around her heart and lungs were going to require surgery to be removed. Friday, they felt things had gone from bad to worse and within 72 hours this would take her life. When we ask them what will happen if we took her off the ventilator Friday, they told us she would die within hours.

Saturday morning, we were shown x-rays that her chest had cleared completely and no surgery would be required to remove the blood clots that were around her heart and lungs, because they were gone. Her collapsed lung had expanded to full capacity and her fever had broken.

This morning, doctors told us they wanted to take her off the ventilator on Monday morning and at this moment; we feel she’s out of “end of life” danger.

Our prayer for the next 24 hours is that they remove the chest tube and they take her off the ventilator (in that order) we want her to be sedated when they remove the chest tube.

Either way, they’re going to treat her with a regimen of chemotherapy that will treat the HD and still allow the transplant team to collect stem cells in weeks to come.

Heavenly Father, I praise your name for hearing our cry for this precious lamb of yours. You were, and are faithful to the cry of your people. Guide the doctors in these coming days. Cover Alese in your love, comfort and peace as she continues her Fight 2 Win. You are the great physician, and we will continue to trust in you. Thank you Father, for all you have done for us and all you are going to do. May your Glory be shown through this storm and may we be renewed by your strength.

We request your continued prayers,

The Coco's

Friday, March 16, 2007

Grim News…

We had a meeting with three doctors, two nurse and two staff members from City of Hope this afternoon at 2:30 p.m.

They gave us grim news and asked us to make “end of life” decisions for Alese. At this time, they feel as though she will not live past Monday.

Our hearts and lives are shattered and without question this is the most difficult news we’ve ever heard, or conveyed.

Alese’s life has been an open book to more then 10,000 visitors a month this site receives and we feel she would want us to post everything…The good, the bad and even the unthinkable.

Miracles can happen at any time and we plead for your continued prayers.

The Coco’s

Difficult Hours…

Alese remains in ICU at City of Hope…

They removed the venerator yesterday morning and she was breathing on her own. However, as the evening progressed her breathing became increasing laborious and early this morning they told us they’re going to place her back on the ventilator.

We were initially told that the surgeon nicked her lung when installing the Hickman. However, we spoke directly to the surgeon yesterday and he said that he inadvertently perforated the vain when installing the catheter. This caused massive bleeding in her chest and caused her lung to collapse. They inserted a chest tube and she was placed a ventilator because she lost the ability to breath on her own.

They also informed us that a blood clot has developed around the lining of the collapsed lung and a different surgeon is going to try to remove the clot in the coming days.

This has postponed any cancer treatment and has preventing her transplant team from harvesting any stem cells. At this point, time is not on our side.

We appreciate the thoughtfulness and kind heartedness of so many concerned people, but, Alese cannot receive any visitors.

We request your continued prayers,

The Coco’s

Wednesday, March 14, 2007

Something Went Horribly Wrong...

Due to low platelets counts and other blood counts being insufficient, the surgery to install the Hickman catheter did not take place until 6:00 this evening.

During the procedure, one of the surgeons nicked her lung and it collapsed. Shortly thereafter, she began bleeding in-between her heart and lung. They’ve installed a chest tube and she’s on a ventilator.

This is not a favorable scenerio and Alese remains in critical condition in the Intensive Care Unit of City of Hope in Duarte.

We’ll update her site as information becomes available.

We request your prayers,

The Coco’s

Tuesday, March 13, 2007

Hickman – Round II

Alese is having another Hickman installed Wednesday morning…

She’ll arrive at COH early Wednesday morning and have surgery at 9:00 a.m. Late Wednesday evening Alese will be infused with a round of Cytoxan and beginning on Thursday, we’ll begin giving her daily Neupogen injections.

Our hope and prayer is that over the next ten days her white count will be above 20.0 and her transplant team will be able to harvest somewhere between 3 – 5 million stem cells.

Thereafter, she’ll be scanned, this will provide doctors with a baseline and will be used as a comparison after two or three cycles of MOPP have been infused. In a perfect world, they want Alese to be cancer free prior to transplant.

Please join in prayer for the following:

1. The surgery will be successful and the Hickman will remain infection free
2. Her transplant team will successfully be able to harvest 3 – 5 million stem cells.
3. This transplant would go smoothly and Alese will be forever cured from this terribly misunderstood cancer.

Thank you again, we appreciate your e-mails, letters and phone calls of prayers and encouragement.

I’ve said this before, but its worth repeating. There is no way we could have endured the last 5-1/2 years without our family, friends and our extended families at Journey of Faith and Honeywell.

With gratitude,

Kathy

Friday, March 09, 2007

Rocky Week…

It’s been a difficult week for Alese…

Monday morning Alese woke us at 4:30 a.m. when she began vomiting large volumes of blood; we rushed her to Little Company of Mary Hospital in Torrance, which is a few miles from our home. Unfortunately, the emergency room triage nurse did not feel throwing up blood warranted immediate medical treatment and requested that Alese wait in the ER waiting room until a bed became available. I was not with them, but Paul told me it was not a pleasant conversation. Yesterday, the hospital sent Alese flowers and a note of apology.

Instead, we took her to City of Hope and thankfully the 25 minute ride was incident free. We called COH in advance of Alese’s arrival and they quickly infused her with platelets upon arriving. We later learned that her platelet’s had dropped to under 20,000 and she was experiencing spontaneous bleeding that has originated in her nose, throughout the night she was swallowing blood. After the infusion, her platelets increased to 50,000 and she was back home at noon.

Throughout the week she’s been bedridden and experienced bone pain. Early last evening, she developed a fever of 102.5, we gave her Tylenol and fluids and monitored her all night. Her fever broke a few just before 9:30 p.m. and City of Hope requested we bring her in if it spiked again. Fevers are also a symptom of HD and we don’t know if this was disease related or if she’s developing another infection. Thankfully, she slept well and this morning her temperature was normal.

Father, in these times of uncertainty we give you praise and glory for your goodness and faithfulness. We maintain our trust in you and we seek you Father as our refuge and fortress for our life. Lord, we lay our child Alese at your feet and ask you to take her and hold her close to your heart. Lord, may the beats of her heart remain synchronized with yours. Please comfort her and strengthen her, please continue to mold her life as it brings praise, glory and honor to you. Strengthen us all throughout this journey, amen.

Wednesday morning, another Hickman catheter will be installed and she will receive another round of Cytoxan and we’ll begin giving her Neupogen shots for the next ten days with the hope of collecting stem cells soon after.

We request your continued prayers,

Kathy