The Brave Little Soul By: John Alessi

Subject: Kristina updated her status on Facebook.
Date: 1/27/2012 6:32:36 P.M. Pacific Standard Time

 “The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.” Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you”. God and the brave soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.”

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Isolation – Trying to keeping Liam Safe

Kristy posted a comment in HLH Survivors on Facebook:

https://www.facebook.com/#!/groups/HLHSurvivors/

As Liam gets closer to 1 year post BMT there are a lot of emotions going through me. I’m wondering if you kept your child in isolation after 1 year post BMT? I’m a parent who has taken isolation very seriously maybe some would say to much but my only concern is keeping Liam safe.

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DAY +243 Liam’s Chimerism Test Results

Subject: Kristina updated her status on Facebook.
Date: 1/26/2012 3:44:26 P.M. Pacific Standard Time 

Liam’s Chimerism Test Results:

“We just wait and see, and hope for the best.”

DAY+ 243 – 01/10/12        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       72% donor origin (28% host)

(CD33+) Myeloid Cells           12% donor origin (88% host)

(CD56+) NK Cells               35% donor origin (65% host)

(CD19+) B Cells                        11% donor origin (89% host)

 

DAY+ 200 – 11/29/11        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       76% donor origin (24% host)

(CD33+) Myeloid Cells           10% donor origin (90% host)

(CD56+) NK Cells               40% donor origin (60% host)

(CD19+) B Cells                        8% donor origin (92% host)

 

DAY+ 138 – 09/27/11        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       62% donor origin (38% host)

(CD33+) Myeloid Cells           23% donor origin (77% host)

(CD56+) NK Cells               71% donor origin (29% host)

(CD19+) B Cells                      22% donor origin (78% host)

 

DAY +28 – 06/14/11        DNA Chimerism Analysis

(CD3+) T Cell                       59% donor origin (41% host)

(CD33+) Myeloid Cells           100% donor origin (0% host)

(CD56+) NK Cells               100% donor origin (0% host)

(CD19+) B Cells                      100% donor origin (0% host)

 

Chimerism analysis is important for monitoring post-transplant outcome and for determining appropriate therapy after transplantation. Since it is the basis for providing early treatment decisions, chimerism analysis requires sensitive and reliable techniques to detect the presence of donor leukocytes in the hosts’ peripheral blood or bone marrow. As lymphoid and myeloid engraftment is asynchronous, lineage-specific chimerism analysis is necessary. This requires the specific enrichment of myeloid and lymphoid cells prior to performing chimerism analysis (e.g. by PCR-based detection of donor- or recipient-specific mini-satellite DNA sequences). http://www.stemcell.com/en/Products/Area-of-Interest/Chimerism.aspx

 

Chimerism in nonmalignant diseases
http://www.nature.com/bmt/journal/v35/n2/full/1704715a.html
Allogeneic stem cell transplantation is the only curative treatment option for many patients with inherited or acquired nonmalignant diseases as thalassemia, sickle cell disease, immunodeficiency diseases, osteopetrosis, storage diseases, severe aplastic anemia, bone marrow failure syndromes and others (for a review, see Section IV in Thomas et al34). The aim of the procedure in these diseases is to achieve sustained engraftment to (i) improve the hematopoietic function, to (ii) correct the immune competence and/or to (iii) increase or normalize the respective enzyme shortage. Therefore a priori, it is not necessary to replace the recipient hematopoietic system completely. The implementation of a state of mixed chimerism is mostly sufficient to substantially improve the patient’s well being. Thus, to reduce toxic side effects, most conditioning regimens are less myeloablative and thereby mixed chimerism is more likely.60,61,62,63 As a consequence, graft rejection or nonengraftment remained the major causes of treatment failures in this diseases. Sensitization to minor histocompatibility antigens by prior blood product transfusion might increase this danger. The rapid development of complete chimerism in NK and T cells seems to play an important role in achieving sustained engraftment especially in patients who were treated with a dose reduced conditioning regimen.64,65,66,67
http://www.nature.com/bmt/journal/v35/n2/fig_tab/1704715t1.html#figure-title
 
Pediatric Transplants
Increasing mixed chimerism and the risk of graft loss in children undergoing allogeneic hematopoietic stem cell transplantation for non-malignant disorders
http://www.nature.com/bmt/journal/v42/n2/full/bmt200889a.html
http://www.nature.com/bmt/journal/v42/n2/pdf/bmt200889a.pdf
How and when should we monitor chimerism after allogeneic stem cell transplantation?
 
How and when should we monitor chimerism after allogeneic stem cell transplantation?
P Bader, D Niethammer, A Willasch, H Kreyenberg and T Klingebiel
Source: http://www.nature.com/bmt/journal/v35/n2/full/1704715a.html
Table 1. Chimerism, definition and implications
http://www.nature.com/bmt/journal/v35/n2/fig_tab/1704715t1.html#figure-title
Next table | Figure and tables index
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I was RAISED!! I didn’t just grow up.

Subject: Kristina  updated her status on Facebook.
Date: 1/9/2012 11:19:40 A.M. Pacific Standard Time

“I was RAISED!! I didn’t just grow up. I was taught to speak when I enter a room, say please & thank you, to have respect for my elders, to get up off my lazy butt and let the elder in the room have my chair, lend a helping hand to those in need, hold the door for the person behind me, say excuse me when it’s needed, & to love people for who they are, not for what I can get from them! I was also taught to treat people the way I want to be treated! If you were raised this way too, re-post this. Sadly, many won’t because they weren’t, and it shows!”

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Journeys of hope…

Subject: Kristina updated her status on Facebook.
Date: 1/14/2012 9:45:33 A.M. Pacific Standard Time

 “HOPE We are all meant for these journeys of hope. Of tenderness of love. Of doing things we never thought we could do.This is where our courage lives. It is where we find ourselves standing strong and hopefully ready to claim what is ours. ~Unkown”

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I want HISTIO classed as a cancer!

Subject: Kristina updated her status on Facebook.
Date: 1/14/2012 9:37:15 A.M. Pacific Standard Time

 “I want HISTIO classed as a cancer! I want it acknowledged that histio patients have the same awful treatments as those with cancer-chemo, steroids, surgery etc, the list is almost endless! I want it reolised that where BMT is the only cure our loved ones (mainly babies) go through absolute hell enduring symptoms most people know nothing about! I want funding and research and I want it NOW!”

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We have come so far…

Subject: Kristina updated her status on Facebook.
Date: 1/22/2012 5:42:49 P.M. Pacific Standard Time

 “We have come so far, others say not enough. However, “Be not afraid of growing slowly, but be afraid of standing still.””

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To Find Hope…

Subject: Kristina updated her status on Facebook.
Date: 1/24/2012 1:04:38 A.M. Pacific Standard Time

“When do you throw in the towel, admit that the lost cause is just that. It comes a point when it becomes too much, when we get too tired to fight any more so we give up. That’s when the real work begins, to find hope where there seems to be absolutely none at all.”

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Mia your amazing!

Subject: Kristina updated her status on Facebook.
Date: 1/25/2012 11:18:34 P.M. Pacific Standard Time

Kristina updated her FB status: “I got this off a page of a mother who’s little girl is so brave. Mia your amazing! The Strength of an Egg by Juliet Freitag Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength “like a rock”. Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength. That is where parents of children with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered. Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.”

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“MARRIED OR NOT U Should Read This:

 
Subject: Kristina updated her status on Facebook.
Date: 1/21/2012 10:55:46 P.M. Pacific Standard Time

 “MARRIED OR NOT U Should Read This: I got home that night as my wife served dinner, I held her hand and said, I’ve got something to tell you. She sat down and ate quietly. Again I observed the hurt in her eyes. Suddenly I didn’t know how to open my mouth. But I had to let her know what I was thinking. I want a divorce. I raised the topic calmly. She didn’t seem to be annoyed by my words, instead she asked me softly, why? I avoided her question. This made her angry. She threw away the chopsticks and shouted at me, you are not a man! That night, we didn’t talk to each other. She was weeping. I knew she wanted to find out what had happened to our marriage. But I could hardly give her a satisfactory answer; she had lost my heart to Jane. I didn’t love her anymore. I just pitied her! With a deep sense of guilt, I drafted a divorce agreement which stated that she could own our house, our car, and 30% stake of my company. She glanced at it and then tore it into pieces. The woman who had spent ten years of her life with me had become a stranger. I felt sorry for her wasted time, resources and energy but I could not take back what I had said for I loved Jane so dearly. Finally she cried loudly in front of me, which was what I had expected to see. To me her cry was actually a kind of release. The idea of divorce which had obsessed me for several weeks seemed to be firmer and clearer now. The next day, I came back home very late and found her writing something at the table. I didn’t have supper but went straight to sleep and fell asleep very fast because I was tired after an eventful day with Jane. When I woke up, she was still there at the table writing. I just did not care so I turned over and was asleep again. In the morning she presented her divorce conditions: she didn’t want anything from me, but needed a month’s notice before the divorce. She requested that in that one month we both struggle to live as normal a life as possible. Her reasons were simple: our son had his exams in a month’s time and she didn’t want to disrupt him with our broken marriage. This was agreeable to me. But she had something more, she asked me to recall how I had carried her into out bridal room on our wedding day. She requested that every day for the month’s duration I carry her out of our bedroom to the front door ever morning. I thought she was going crazy. Just to make our last days together bearable I accepted her odd request. I told Jane about my wife’s divorce conditions. . She laughed loudly and thought it was absurd. No matter what tricks she applies, she has to face the divorce, she said scornfully. My wife and I hadn’t had any body contact since my divorce intention was explicitly expressed. So when I carried her out on the first day, we both appeared clumsy. Our son clapped behind us, daddy is holding mommy in his arms. His words brought me a sense of pain. From the bedroom to the sitting room, then to the door, I walked over ten meters with her in my arms. She closed her eyes and said softly; don’t tell our son about the divorce. I nodded, feeling somewhat upset. I put her down outside the door. She went to wait for the bus to work. I drove alone to the office. On the second day, both of us acted much more easily. She leaned on my chest. I could smell the fragrance of her blouse. I realized that I hadn’t looked at this woman carefully for a long time. I realized she was not young any more. There were fine wrinkles on her face, her hair was graying! Our marriage had taken its toll on her. For a minute I wondered what I had done to her. On the fourth day, when I lifted her up, I felt a sense of intimacy returning. This was the woman who had given ten years of her life to me. On the fifth and sixth day, I realized that our sense of intimacy was growing again. I didn’t tell Jane about this. It became easier to carry her as the month slipped by. Perhaps the everyday workout made me stronger. She was choosing what to wear one morning. She tried on quite a few dresses but could not find a suitable one. Then she sighed, all my dresses have grown bigger. I suddenly realized that she had grown so thin, that was the reason why I could carry her more easily. Suddenly it hit me… she had buried so much pain and bitterness in her heart. Subconsciously I reached out and touched her head. Our son came in at the moment and said, Dad, it’ s time to carry mom out. To him, seeing his father carrying his mother out had become an essential part of his life. My wife gestured to our son to come closer and hugged him tightly. I turned my face away because I was afraid I might change my mind at this last minute. I then held her in my arms, walking from the bedroom, through the sitting room, to the hallway. Her hand surrounded my neck softly and naturally. I held her body tightly; it was just like our wedding day. But her much lighter weight made me sad. On the last day, when I held her in my arms I could hardly move a step. Our son had gone to school. I held her tightly and said, I hadn’t noticed that our life lacked intimacy. I drove to office…. jumped out of the car swiftly without locking the door. I was afraid any delay would make me change my mind…I walked upstairs. Jane opened the door and I said to her, Sorry, Jane, I do not want the divorce anymore. She looked at me, astonished, and then touched my forehead. Do you have a fever? She said. I moved her hand off my head. Sorry, Jane, I said, I won’t divorce. My marriage life was boring probably because she and I didn’t value the details of our lives, not because we didn’t love each other anymore. Now I realize that since I carried her into my home on our wedding day I am supposed to hold her until death do us apart. Jane seemed to suddenly wake up. She gave me a loud slap and then slammed the door and burst into tears. I walked downstairs and drove away. At the floral shop on the way, I ordered a bouquet of flowers for my wife. The salesgirl asked me what to write on the card. I smiled and wrote, I’ll carry you out every morning until death do us apart. That evening I arrived home, flowers in my hands, a smile on my face, I ran upstairs, only to find my wife in the bed -dead. My wife had been fighting CANCER for months and I was too busy with Jane to even notice. She knew that she would die soon and she wanted to save me from whatever negative reaction it would have on our son, in case we pushed through with the divorce. —At least, in the eyes of our son—- I’m a loving husband…. THE SMALL DETAILS OF YOUR LIVES ARE WHAT REALLY MATTER IN A RELATIONSHIP. “IT’S NOT” the Mansion or House, the Car, Property, the Money in the bank. These create an environment conducive for happiness but cannot give happiness in themselves. So find time to be your spouse’s friend and do those little things for each other that build intimacy. Do have a real happy marriage! If you don’t share this, nothing will happen to you. If you do, you just might save a marriage. Most of life’s failures are people who did not realize how close they were to success when they gave up… YOU DONT REALIZE WHAT YOU HAVE UNTIL ITS GONE!! ***PLEASE RE-POST & PASS THIS ON**♥”

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