Showing posts with label Leaky Gut. Show all posts
Showing posts with label Leaky Gut. Show all posts

Tuesday, May 12, 2009

God's Hands and Feet

"God's hands and feet." This phrase has been echoing in my head for awhile now. It started the moment I began to thank God for allowing "me" to take care of Samuel and to be the one who found the things that helped him. Previously, I looked back at the incredible struggles feeling annoyed that God allowed certain instances go on for so long. In 2004 when it all began, I prayed for God to lead us to MD's who could help and would truly care for Samuel. As you know, they were few and far between. In four years of medical saga, I found that much of this establishment is riddled with corruption and it is much more about business than "healthcare.." It still shocks me to think of the many MD's, not to mention bureaucracy with whom we pleaded for compassion, yet they could have cared less about whether Samuel lived or died. When it became obvious that people were continually failing us or simply ignoring us, my prayer changed to ask God to show me how to help Samuel. That is when my prayers started getting somewhere. In looking back at it all, I see clearly how God honored my heart and my compassion for my own son. I see now that He did not allow the many MD's whose motives toward us were not pure to help. These people share none of the Glory of any of Samuel's miracles. They have no part in the moments of unspeakable joy that we had when Samuel was doing well as a result of my efforts. Those were my moments. Those were God honoring me.

There were so many moments in Samuel's sufferings that felt "third world" and from the end of March onward, I certainly relived many of them. I say "third world" because there was no one else who knew how to help so it was all on me. Many times where his pain or amount of physical problems were so unbelievable to even us who looked at them daily. How could things get so out of control when we supposedly have such good medical care here in the US?

I often felt deceived by modern medicine because what happened to Samuel's body seemed like it should have NEVER happened in such an advanced nation and often times the "fix" was so simple. Simple, yet no MD thought of it. Of course December of 2007 stands out because Samuel was dying, literally at death's door, and then a few simple herbs reversed it all. Every day he woke up miserable, I told him first thing in the morning for a week or more that "Mama is going to do everything God shows me to do to make you better. I promise, baby. You will feel better." Then I hit my knees and begged God to just heal him because I was out of options. I didn't have a clue what to do and felt I had already tried everything. What was wrong with Samuel at that point was beyond anything I had encountered and I had been trying things for weeks to no avail. He was in worse physical shape in December than he was in April and May of 2008, and that is saying something considering he died in May. In the eight days of May, he got stronger, not weaker. I just realized that this morning when I was thinking back. And yet several of the worst days passed where I promised Samuel he would get better and it never came to pass. It was horrible and my insides were literally screaming in dismay that I was lying to Samuel telling him I could help him yet he was dying. He should have died. Of course, everyone else had written him off at that point. But then came a breakthrough all by seemingly co-incidence. Samuel improved immediately with the simple herbs and he then knew his Mama kept her promise. That moment was a gift. God gave me that gift; a gift which no man can give and no man can take away. All those prayers I offered up to Him were answered but not in the way I expected. I expected Him to just DO what I asked and fix whatever was wrong with Samuel Himself but instead, He allowed me to be His hands and feet. He allowed me to keep that promise. Because that promise was kept, Samuel got better. Amazingly better. Better enough to have three glorious months of joy. Because that promise was kept, Samuel drew me this picture "to thank me for helping him get better." I now wear the evidence that that promise was kept around my neck.




Having the Lord reveal so many of these awful moments in His perspective makes me all the more thankful to Him for the role I played in it. On a spiritual level, I have nothing but joy, awe and gratitude in retrospect. I am certain that once I am with Samuel again, all we will remember is the amazing parts of his life here and how God knit it all together in such miraculous ways. But since I am still living on earth, I cannot forget the suffering. Mark and I agree, the worst thing was starvation; especially in December 2007. It didn't matter that his gut wasn't working. It didn't matter that leukemia was in the picture. What mattered was that even though we were feeding him, his body was starving. I dug and dug and dug for information on how to feed a child who has starved for a long period of time. I found a very helpful medical site that was part of a text specifically prepared for Africa. It gave a very detailed protocol for tube feeding children who have starved for so long that they no longer even feel hungry. It outlined all the physical issues and treatments associated with digestion starting again after it has been stifled for months. A lot of it was familiar to me as we had already went through this in 2004 when trying to get Samuel off TPN and back on NG feeds. He could not tolerate even 5ml or 1 tsp. of liquid given over an hours time. He threw up. It took weeks, patience, anti-nausea meds, motility meds and lots of towels to clean puke to get only half way back to normal. Of course, none of this worked for Samuel because we weren't dealing with a normal GI tract and at that point, I didn't know about the leaky gut. At any rate, here I had to find "third world" medical instructions and that was heartbreaking. Heartbreaking because not only did I have to deal with this in my own home, but also because starvation is a reality for families worldwide. At least I had options. The scanty medical care Samuel received was certainly better than none. The Internet has "how to" galore, all you have to do is sift through it. Samuel's "maintenance" medical costs which I paid out of pocket were not cheap, but we had options. I really took a step back when I read that medical text and thought of the many families who don't have options. Starvation is a horrible, painful, hideous way to die. It is a stupid reason to die. Malnourishment isn't much better in that it opens the door for all kinds of diseases. I know first hand.

Shortly after Samuel died, several churches raised money in his honor and asked where I would have them donate. My answer, "Feed the hungry. There wasn't anything worse than watching Samuel starve. Nothing worse than having him beg for food and tell him he couldn't eat. Nothing worse than hearing him sob over it." And it didn't matter that we had food. It didn't matter that we fed him. His body never received it past a certain point in April. His body looked no different than the malnourished in third world countries. He starved to death and died the same way many children die worldwide. Those memories break me. 1/3 of the inhabitants of the earth are starving to death.

I have spent months trying to determine what I might do with my time for the Kingdom, for the One who helped me keep my promise, for Jesus who prepared a place for Samuel and rescued him from that broken body. If you have been a follower of Christ for even a short amount of time, you have most certainly been told that "God has a plan for your life." What exactly does that mean? Does it mean you have a perfect childhood, get a good paying job, drive a sports car, live in a mansion and have money coming out your ears? I know certain evangelists who will tell you this is true. If you take the time to search out scripture, you will find that when Jesus walked the earth, He didn't hand out "perfect lives." Proverbs 30:8-10 says Give me neither poverty nor riches— Feed me with the food allotted to me; Lest I be full and deny Yo u and say, “Who is the LORD?” Or lest I be poor and steal and profane the name of my God. In Matthew 19:24 Jesus says, "Again I tell you, it is easier for a camel to go through the eye of a needle than for a rich man to enter the kingdom of God." Jesus knew that the "rich" have a difficult time "finding God" because they believe that great wealth means their soul is rich. He sums this up again in Revelation 3:17 where He says "You say, 'I am rich; I have acquired wealth and do not need a thing.' But you do not realize that you are wretched, pitiful, poor, blind and naked." Anyone who tells you God's plan is for you to have an abundance of material things hasn't read their Bible. As Solomon says, it is best to be somewhere between rich and poor as far as material wealth goes.

God's plan for you is the same one Jesus gave His disciples.

The Great Commission Matthew 28: 16-20
Then the eleven disciples went to Galilee, to the mountain where Jesus had told them to go. When they saw him, they worshiped him. Then Jesus came to them and said, "All authority in heaven and on earth has been given to Me. Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age."



Make disciples of Jesus Christ in all the nations. Keep the commandments. That is the plan. Now we just need to figure out how to integrate that into our daily 9-5. 1 Corinthians 12 gives detailed illustration to the fact that Christ is the head of the Church and followers of Christ are the body. We are the body yet we all may have different functions in it. The trick is to find what the function is and then do it. Remember, "God's hands and feet." This is our privilege. Unspeakable joy enters in when you find your function in the body and do it. I was raised thinking I had to get a good education so I could get a good job. As a child, it is pounded into your mind. But who do we really work for? 1 Corinthians 10:31 says So whether you eat or drink or whatever you do, do it all for the glory of God. I work for the King. This is what I am going to "pound" into my kids heads. Education and jobs are great and again, that is our privilege given by God. But the ultimate goal in everything should be for the Glory of God. Impacting the Kingdom. Where do you start? Start with what is in your hand. Everyone has God given talent. Everyone has a God given longing. God made us to serve Him so when you find your niche, it should be a joyous occasion. You should "know" it when you find it.

Sometime in April, I became aware of Compassion International through Angie Smith's blog. I have "known" Angie for just over a year now though we have never met. At first I just skimmed through the Compassion site not really having much of an opinion either way. The Lord kept drawing me back to it. So I started reading through the "real" stories of children and families who are helped. I dug deeper and contacted some people personally who are involved in Compassion's outreach and was further intrigued. We all know we are supposed to "help the poor" but do you really know what the Bible says about the poor and how we are supposed to help? Psalm 82:3 says Defend the cause of the weak and fatherless; maintain the rights of the poor and oppressed. Proverbs 22:2 says the Rich and poor have this in common: The LORD is the Maker of them all. Deuteronomy 15:11 says There will always be poor people in the land. Therefore I command you to be openhanded toward your brothers and toward the poor and needy in your land. Is the Lord shocked by poverty? No. He is responsible for both. Chew on that for awhile. James 2:5 says Listen, my dear brothers: Has not God chosen those who are poor in the eyes of the world to be rich in faith and to inherit the kingdom he promised those who love him? This verse says "poor" have a very special anointing of faith on them. Chew on that. I know a bit about special anointings because Samuel had one.

The Torah (Genesis-Deuteronomy) explains God's plan for the poor in great depth and it's not welfare. God's plan is to get them working to get themselves out of poverty. Of course, immediate family should always take care of them first without repayment. The person is still required to work and contribute to the family, however. If family is not available or able, then the poor can sell himself into slavery to another. Slavery here isn't what you imagine slavery to be however. Slaves had to be taken especially good care of right down to the most minute detail. If the slave did not have a pillow to sleep on, the master had to give the slave his. They were often treated better than family. A person could only be a slave for six years and in the seventh year was set free with tons of resources to make it on his own. Special rules were in effect for farmers to harvest only the inner parts of their fields leaving the outermost borders for the poor to take freely. Provisions were made for the poor when it came time for sacrifice or offerings as well; sort of a sliding fee scale type thing. In short, they were not to be ignored, exploited or taken advantage of. Mercy and grace must always abound and if you knew about a person who was poor, you were supposed to help them get out from under their poverty. Proverbs 28:27 says He who gives to the poor will lack nothing, but he who closes his eyes to them receives many curses.

So many people closed their eyes to Samuel's life and sufferings here. They knew it and yet they ignored us. I will never forget how that felt as long as I live. I have never been the kind of person who would walk past someone I could help. I have seen third world suffering first hand and if I could help someone miss out on it entirely, I would.

As I continued to search out Compassion, I realized that they are helping the poor very much in line with Torah teachings. It is not just welfare assistance creating dependency; it is a whole host of life-sustaining and life-changing skills that gives the children hope and a way out of poverty. They are changing lives, not just throwing money at people. They are helping the poor keep their dignity by keeping families together and helping to stamp out the desperate measures some may take to survive. They are helping children have a "childhood" which is something Samuel never had.

Compassion follows Torah because it is centered around building the relationship. Children who enter the Compassion programs are often enrolled as young as four and "graduate" between the ages of 18-22 depending on the country. You can be their sponsor for over a decade in many cases. You are not anonymous, the child you sponsor will know who you are and will exchange letters with you. In many instances, the sponsor becomes the lifeline to hope for the child. While you may sponsor the child, their whole family is affected because of you. And you have the option to give additional financial gifts or visit your child in their country.

My "formal" education is in Accounting and there are a number of economical reasons why the small monthly gift helps these children. If you give $32 a month to a family whose income is $11 a month, even though in our economy in the US, it isn't much, for them it is a significant raise. Obviously these people don't have house payments or car payments to meet. Nor to they have telephone, or Internet. Compassion is their only lifeline. They are throwing themselves out there and praying that someone in the world will notice and care. Often the families are farmers who grow and trade for their living. They have very limited resources so you gift helps with medical care, clothing, tuition, job training, etc. Compassion has special programs in which you can financially give more and a lot of people do. They give you very specific info on the child's economic circumstances and also tell you which months are hardest for hunger and disease.

Helping to meet some one's basic needs is an important step in their well-being. But as I have learned from Samuel, your whole body can be completely ruined and you can live in a 10x10 room for months, but if you know Jesus, that changes everything. You can find joy in the little things. Life is built upon love and not on materialism. So many of the children being reached through this program have nothing in the realm of "stuff" but have the Joy of the Lord which no man can buy or sell. It is God given. I want to help that happen. I realized last month that Samuel's life has given me a heart for people in third world countries who need us as much as we need them.

I felt the Lord tugging at my heart and I knew He was calling me to this I started looking through the pictures of children waiting for sponsors but I couldn't figure out how to even pick because there are so many. I decided to plug in Samuel's birthday to see if there was a child I could sponsor and there was only one: Esther in Ghana. Fitting. She is in Africa and Samuel's favorite RN was an Esther. My children and I fell in love with this Esther immediately. And in the same country, on the same page, I found a Samuel. I took that as a confirmation. My Samuel doesn't need my help anymore but I could help someone else's Samuel and I cannot tell you why but that thrills me no end. We loved him immediately too (Their pictures are in my side bar.) . But then I began to have a big problem. I wanted to help all the kids. Mark came home and asked me if I was sponsoring ten more but I knew I couldn't. I still wanted to. Well, God showed me how I could help them more. So, I decided to become a Compassion Advocate in addition to sponsoring children. I cannot close my eyes to them.

When I first started looking into Compassion, it seemed like such a little thing. But it has brought me great joy. Anna prays so sweetly for these children and she loves them even though she may never meet them on earth. It is a good learning experience for them as well: geography, economics, culture, etc. I want my children to realize that they are blessed. I want them to realize that all the stuff of this world is worthless compared to the joy of helping another human being. I want them to appreciate what they have but always be willing to give. I want to work to make a "Giving" not a living and I want to teach them to do the same.

Why does God allow poverty? Why does He allow disease? So we could learn about His compassion. So we will act with compassion as our second nature. Jesus was often moved by compassion in His walk on earth and all He asked in return was for people to believe in Him. If someone on earth has a need, God created someone else to meet it. Everything has an opposite. God made the rich to bless the poor; to be His hands and feet. Each has a gift to offer the other and I think God knew that if His commandments were followed, that the rich and poor would then bless each other and meet somewhere in the middle.

If the Lord leads you to sponsor a child with Compassion, please make my day......let me know. If you are looking for a well thought out Bible compliant charity who makes good use of funds, Compassion International is one of them. Perhaps you are called to do something else for the Kingdom. God knows you won't have to look very far to find someone who needs God's hands and feet to come near them. Instead of asking God to "fix" everything for us and just watch from the sidelines, let's ask Him how we can be His hands and feet and teach other to do the same. God gave US dominion over the earth to carry out His plans and we need to take it back by sharing Jesus, making disciples, and following His commandments.

Friday, January 2, 2009

Samuel's Gut -- What Really Happened

Every year, for me, seems to wrap up the same way. Saying good riddance to all the bad and wondering what new horrors the next year will bring. Sure I think about the good things that happened but I know all too well how quickly the bottom can drop out of your world. Nothing remains, nothing lasts, nothing ever ends up the way you thought it would. 2008, without a doubt, has been one of the greatest and worst years for our family to date. The past seven months have been the "quietest" I have lived in years. Samuel was such a giant part of my day and having him suddenly gone and all the responsibilities he came with just vanish has made life strangely silent. December, as I have already shared, has been a month of "revelation." Samuel's last days in review. Samuel's life in review. I see things clearly now. Things that were once blurred by worry and responsibility have come into focus. The "focus" is overwhelming. This update comes with a warning. I am going to share with you what happened to Samuel's body and it is sick and horrible. And yet, we lived it.

In the middle of my "revelation" this month, I asked God to show me what happened to Samuel's gut. Especially at the end. I said, "I took care of him all that time, don't I have a right to know exactly what was wrong?" The Lord answered me with one word. "Holes." I already knew that. Okay, dig deeper. Obviously, at the end, Samuel's gut was bleeding out. His "digestion" if you could call it that, was reversed. After the week of his birthday, things no longer went down, but instead came back up. His "plumbing" was backwards. It was all wrong. But this wasn't the first time. The same thing happened in December of '07 only without the blood and without the "blasting off" of cancer. Obviously something was very broken.
I thought back to something puzzling A "pattern" we noted early after Samuel relapsed was that every time Samuel's body would lose blasts, we could tell by the poop. When he did not lose blasts his poop looked more normal. When cells were dying quickly and his labs showed blasts down, he had diarrhea or the sand and gravel poop we saw from about September of '07 on. Now, if you were doing chemo, diarrhea would be expected since it destroys the lining of the gut. . But with the natural treatment, he should have just peed the blasts off. That is the expectation of every alternative cancer treatment. "Drink plenty of water to flush the system." It is not good for a body to rid itself of tons of dead cells all at once hence most alternative treatments for cancer can be done at home because they gently rid the body of cancer. Samuel's body wasn't just ridding itself of cancer. It was dumping all the food toxins in the fastest way possible. Through the gut. I would expect more poop than pee based on him not having a colon but not diarrhea based on blood filtering. The exception would be when the toxins in the blood are so overwhelming that the liver pushes them out through the gall bladder and into the intestines instead. This typically happens when a person does a "cleanse." The diarrhea and flu like symptoms occur when the toxins dump into the intestines and they have to clear it. Usually a "cleansing crisis" only lasts a few days and you are told to back off on the cleanse if symptoms get too awful. Drinking extra water and eating fiber filled fruits and veggies helps the gut clear the toxins before the gut thinks it should digest them again. I always thought Samuel's poop pattern was strange, but it just never clicked until the Lord brought it back to my attention. Something was terribly toxic in Samuel's blood to make his liver continually dump toxic wastes into his small intestine. This was more than just leukemia and his "plumbing" did not just circumvent the normal elimination system overnight.
There is a condition in which the gut develops pores and in later stages, holes, that allow contents of the gut to "leak" into the blood. It is called "Leaky gut." It is a condition I had heard about previously. One formula our ND recommended back in 2004 was for Leaky Gut. I did try it for awhile but found my own food regimen for Samuel worked much better. I looked it up again when Samuel started having bacteria cross the gut to the blood in December of last year but somehow never saw the list of symptoms and side effects. If I had, it would have explained a lot but by that time, it was already WAY too late. Allopathic medicine does not recognize this condition beyond "increased intestinal permeability" which is caused by inflammation of the mucosa lining of the gut wall. Left undiagnosed, inflammation leads to pores that allow the contents that fit through these holes to get into the bloodstream. It can happen in any part of the GI tract including the colon. The only treatment offered is antibiotics to kill any bacteria before it crosses into the blood and special formula or TPN in extreme cases. Of course, first it has to be diagnosed. You cannot physically see the holes but there are a variety of tests to check for the evidence. Certain nutrients deficient in the blood such as zinc and albumen. Electrolyte disturbances. Elevated WBC's especially monos. Elevated LDH. Biopsies of the gut show increased WBC activity in the lining. All of which we saw evidence of.
This condition is not uncommon in young children as well as adults and is identified in many autism cases. I believe it is more common than people think given the large amount of small children and even babies I know of whose GI's are already showing signs of damage. It is very easy to see how it happens. Leaky gut can be caused by anything that damages the gut lining including poor diet, antibiotics, chemo, poor food assimilation, pain meds especially ibuprofen and narcotics, and steroids. Things were are led to believe are "fine" may be killing us. The "holes" in Samuel's gut did not happen overnight. They were the result of years of his gut in crisis. Years of drugs, pain meds, an anus closing down trapping the poisons there so they could do even more damage. Every drug, every antibiotic, every food he enjoyed eating was poisoning him. On top of that, I believe his gut was most likely compromised even from birth.
There is one thing every incidence of leukemia, for Samuel, had in common. Table food. He was originally diagnosed six months after being weaned from breastmilk. But even before that, he was nicknamed "Pooper" because he pooped all the time. Perhaps his colon was compromised initially and the chemo just sped up the demise. It literally fell apart inside him and later in the surgeon's hands. Really similar to what happened to his small intestine at the end of his life. There were many opportunities for Samuel's colon to be damaged. Before he was six months old, he had taken a round of steroids for croup. Later, a round of abx for an ear infection JUST before diagnosis. Not to mention I had a round of abx while carrying him and an IV abx just before his birth. As I have said previously, we saw evidence in some of his baby pictures of extreme paleness and I think breastmilk literally kept leukemia at bay. I mention breastmilk because it has large amounts of the immunoglobin IgA which heals and restores the gut mucosa. As you recall, in the end, breastmilk always helped improve not only his gut function, but also his labs overall. It is also the easiest food on the planet to absorb in a state where the gut is compromised. It prolonged his life.

Every chemo caused a massive GI crisis for Samuel. Even with the ileostomy. All those abx never helped matters but as long as his anus wasn't involved, the food could escape in a reasonable amount of time. After his gut was reconnected however, this all changed. I am not certain if he had "leaky gut" prior to the ileostomy being taken down but I can easily see how it developed after. My GI reminded me that we will never know just how damaged Samuel's small intestine was when he lost his colon. They certainly could have left a lot behind in hopes it would somehow heal and it never did. The damage was so intense that even a shunt in the abdomen never worked because of the massive amounts of scarring to what was left of his gut. Not to mention his anus and rectum collapsing and healing shut. I would say that is damaged. The ileostomy wasn't perfect either and at one point, his stoma closed up and tried to retract back inside his body. That also reversed his digestion to the point where his breath stunk like poop and the smell was coming out all his pores. The fact that his anus continually closed down after having his gut reconnected causing the contents in his gut to rot there and irritate the lining supports how this crisis would never heal. These were ALL mistakes made by caregivers who never put any forethought into the future. A lot of these could have been avoided if people either had the knowledge or actually gave a crap. By the time we found our GI, it was far too late. My own gut was screaming at me to NOT go through with the surgery to hook his gut back up but I did not feel we had any other choice. The stoma wasn't working right either. It probably would have, had we been able to abandon chemo then. But that wasn't an option yet either. That, and I did not know then what I know now. Had I known in 2004 what I know now, I would have walked away from everything.

For the first 15 months after Samuel's gut was hooked back together, he never had more than a month of healing time for his gut before his anus closed and started the vicious cycle of closing down and trapping the contents all over again. During that time, I fought with our "caregivers" for help with the anus and with the constant ileuses but no one would listen. They either never believed his anus was closing because they had "just" opened it up. Or they wanted to fight about who should actually do the surgery and who would pay for it. It was always about the system and never about Samuel. Therein lies another problem. It was always me against them. We rarely had an advocate who stood by us when we needed help most. All that damage over all those months just added up. All those foods in his gut constantly irritated the lining and as a result, he suffered chronic diarrhea or constipation. We thought the anoplasty would fix it all but instead he came home worse than when he left. That was puzzling then but I know why now. They loaded him up with more ABX than he has ever had for any other surgery and then add morphine.

I had always assumed that Samuel's gut issues were a result of the anus closing down, food becoming stagnate and creating blockages. Whatever was "stuck" was then hperabsorbed and created all the muscular pain as well as the headaches. That was only half the picture. What was really happening was whatever food, digested or not, that was stuck in there just burned holes in his gut trying to get out any way it could. If the anus wasn't accommodating, then the contents found another" hole." A lot of foods properly digested from the stomach can be directly absorbed in the gut to go into the blood and then to the liver for filtering or further processing but certain nutrients should never cross without first being properly assimilated. Undigested foods should absolutely NEVER cross. So here we have another problem because Samuel OFTEN pooped out undigested foods so how many of those do you think entered his blood the same way they came out?

The immune system responds trying both to heal the lining of the gut and clean out the "invaders" in the blood. If the condition is not gotten under control, the immune system is soon overwhelmed. It is one thing to have a few contents here and there but can you imagine particles of undigested food flooding into your blood? It is easy to see how Samuel's immune system could be overwhelmed. Once overwhelmed, the immune system just dumps the "invaders" into the muscles, joints, vital organs, and lymph nodes in an attempt to clean up the mess. Organs swell causing more immune response. Physical symptoms set in such as headaches, muscle pain, joint pain, diarrhea, constipation, fatigue, anal irritations, swelling anywhere in the body. A "leaky gut" appears to be the starting point of many chronic problems such as food allergies, auto immune diseases, and cancer to name a few. What it boils down to is the blood being poisoned by the gut leaking it's contents into it. It is sickening.
Leaky gut can be treated with a strict diet, probiotics, enzymes, stomach acid, certain herbs and absolutely NONE of the afore mentioned drugs. Successful treatment can take anywhere from 4-12 months depending on the severity. As I found through some research, there are many tests available to diagnose this condition but you have to first go to a physician who admits it exists. Samuel's g-tube diet was perfect for healing his gut and what is amazing is how God prompted me to "make his food" as soon as we arrived home in July 2004. It was that diet that kept him alive. Funny, it was always the first thing many MD's tried to get me to discontinue. This diet had tons of enzymes, probiotics and herbs that helped clean his blood, nourish his gut and support his liver. When he came home in 2004, it was with hepatitis from prolonged TPN. The very first thing I did with his diet then, was to get his liver in check. His homemade formula was predigested so all his body had to do was absorb it. Interesting that this exact diet was similar to the one indicated for healing Leaky Gut. The other thing that helped was that Samuel did not want to eat. It took several years for him to even want to eat. Unfortunately, what we did not know was any food that he ate no matter how nutritious was poison because of the "holes." We saw evidence of this everytime he tried to eat. His gut would always revolt.

I started thinking more about the timing of Samuel's relapse which had never made sense to me. He went through all those surgeries, a whole year of GI complications, another surgery and never relapsed. Surgeries stimulate the immune system in a big way and typically relapse can be associated with them. We really thought we would be in the clear after the anoplasty but when we came home his gut seemed so much worse.. After a few months of herbal treatment and attention to diet detail, he was doing MUCH better. Better than ever. He was finally able to eat food! He was eating and pooping and everything seemed so grand. I had even cut down on the G-tube feeds to once a day because he was able to eat so well, and wanted to. And we wanted him to. His poop was just beautiful! All we ever wanted was for him to be able to eat and poop and he finally was able to. Then relapse. Well, I realize why now. At first, I thought it was just acidic vs. alkaline foods and it was the diet shift that allowed the leukemia to come back. I realize now that it was not acidic vs. alkaline, it was table food with no predigestion vs. his beautiful homemade formula. I had been feeding him the same diet since 2004 with great success. Up until the year, 2007, he never really was interested in food and since table foods usually bugged his tummy so he was always sorry if he did try eating. He had a few staple items and that was it. This changed around April and May of 2007. The herbs I chose to soothe his gut were working and he was able to eat and enjoy food without issue. Or at least we thought. What his body was doing was storing up whatever foods were leaking into his blood and without his "cleansing" enzyme rich diet, his body wasn't getting rid of the toxins. Most likely, all the diarrhea we had seen for the many years before, was from toxins being cleaned out regularly and being dumped into his gut vs. kidneys. The "plumbing" was wrong for years trying to deal with the damage. It is amazing the lengths a body will go to in order to survive. I wasn't adding enzymes with his table food because he seemed to be doing so well. We just enjoyed watching him enjoy food for the first time. What we did not know about were the "holes." The herbs did help soothe the mucosa lining and the fiber in the herbs helped his poop to move along and appear normal. We always saw more "normal" looking poop when Samuel's body was not clearing out blasts. When his body could take no more in 6/07, leukemia entered. All we saw was he was doing what we thought was great, then relapsed. It was a total shock. Now, that I know about the Leaky Gut, I realize that food for his enjoyment only poisoned him especially after the anoplasty. He must not have been making any enzymes for months before the relapse if not years. Everything he put into his mouth for the sheer joy of eating poisoned him because his small intestine was so damaged.
As soon as he relapsed, one of the first things I did was took over total control of his diet. All that table food was taken away. And he dropped 60% of his blasts in a few days time with no meds at all, just food changes. His g-tube diet being very "cleansing" immediately caused a "cleansing crisis." You could smell the dead cancer cells. What I did not know was that his body was also dumping all the "food poison" it had collected as well. There must have been an enormous build-up. We did see signs occasionally before he relapsed. He was tired when he shouldn't have been. He had a lot of trouble keeping his body temp regulated. We just assumed it was the heat. Or that he just was physically doing too much. His body wasn't using the food he ate properly but his immune system was trying to manage it all. We always gauged his activity level with how energetic he was with the ileostomy. Those days when his food took less than five hours to travel from top to bottom, were the best.
With diet and the cesium treatment, Samuel was able to get back into remission. The cesium protocol was the best treatment for him as it "cleans the blood." The cesium/DMSO combo revved up his immune system as well and I am certain that helped it clean out the toxins in his blood as well. It obviously wasn't keeping up previously. The protocol consisted of many aspects. Additional enzyme support. Strict diet. Additional nutrients, etc. All the things his body was deprived of because of the massive gut injury. His table food intake was significantly reduced (much to his dismay) therefore, the "poisoning" had stopped. Once we started the "blood cleansing" foods and herbs, that telltale diarrhea began. His blood started dumping it's garbage into Samuel's gut. The thing is, who knows how much of the cesium, the diet, the additional enzymes his body actually was able to use. His gut was in crisis the whole time.
Cellulitis and abx entered the picture just as Samuel entered remission. Every drug, every abx, all nail guns to his gut. And on top of that, he was starving because the cellulitis had decreased the size of his stomach. So we allowed him to eat some well chosen table foods that followed his alkaline diet. Didn't matter. No enzymes. So they were poison. His gut went crazy between the food, the abx, and the pain meds. Leukemia came back within a month of remission. We stopped the abx just to have the cellulitis return with the leukemia so had to put him back on abx. After that, it really made no difference what I fed him, how soaked in enzymes it was, etc. His gut was done in. And he had now WBC's to heal it. It is an amazement that we ever gained control of it after that. Everything was poison after that. That was when the muscle and joint pains began. The muscular and joint pains are a result of the toxins in the blood being so overwhelming to the system that it deposits them into tissues and joints. They also cross the blood brain barrier and cause headaches. IV Sodium Bicarb helped a lot because it neutralized many of the toxins in the blood. It worked even better by mouth because I could give him a large dose and he would feel immediately better. It was amazing. But it didn't last long. When I did some research on the liver dumping wastes into the gallbladder and then to the gut, I found that the gallbladder also provides bicarb to the gut to neutralize the stomach acids. It also stores bile which by the way, I hadn't seen bile in over a year by this time. It usually flowed out between ileuses. So I wonder if he just could not make enough of that as well. Pancreatic enzymes also enter at the same juncture. I know he wasn't making any enzymes at all by then but what I did not know as that if his liver was dumping wastes into the same place where digestive juices should be entering, it is no wonder his "digestion" was so impaired. The gut can also push foods directly into the tube that drops the enzymes and bile forcing undigested food into the gallbladder and liver so who knows if there wasn't something worse going on here too. In the end, the blood in his stomach was fairly fresh so it very well could have come from the liver. It is a miracle his liver worked at all. At one point, in October, we did see his liver enzymes skyrocket and it was at that time I did a "liver cleanse." We also saw blasts drop like flies even though I wasn't even treating cancer at that point. Unfortunately, the cellulitis looked to be rearing it's head again and we chose to use G-CSF to see if there was any benefit. None. Just more blasts. The vicious cycle continued. Only after that, his poop turned to sand and gravel. Interesting note. When people have their gall bladders removed, what is often found inside them is sand and gravel. So, it would seem that we fed Samuel, foods leaked into his blood, went to his liver, and were dumped into his gallbladder then back into his gut to be digested over and over and over. Especially if his anus was closing which it was! His body was continually trying to digest waste. All that time, I thought he had a blockage but what I believe now is that it was a vicious cycle which is why we never got rid of the sand and gravel poop after that. It is so sick to think about it.
And yet, we somehow managed to keep it under some control for a time by adding even more enzymes and acid to his foods. In December the bacteria started getting into the blood and the pains got even worse. Then exhaustion set in and he literally was lifeless as he was starving to death even though we fed him the whole time. His body did not know what to do with the nutrients and his gut was so damaged by then that it was absolutely frightening. Our caregivers simply wanted to drug him out at that point and accept defeat. I was adamant that I wanted to find the problem and fix it rather than just cover it with drugs. The Bicarb and nettle tea worked better than anything else for relief anyway. And the argument was the same, the pain was all cancer according to the Onc. I knew it could not be simply because Samuel's WBC was less than 5k. That cancer was still under some kind of control miraculously enough! That pain wasn't cancer. It was obviously gut. It had always been.
My kids and I sat by Samuel's side in December while he lay on the couch dying, and we laid hands on him and prayed for his body to live and not die. We stood in agreement that day. I also told Samuel that if he wanted to live then he would have to get up off the couch and fight. Laying there was death. He was not too pleased with me because he was SO tired but 30 minutes later, he came into the kitchen to show me he was up. "See Mama, I am up. I am walking." I praised him and I praised God. It wasn't long after that the Lord showed me the herbs that helped quickly detoxify the blood and that stopped the pains. By this point, Samuel had again given up all table foods. I then bathed his foods even more in massive amounts of enzymes and acid for hours before I fed him and that forced his gut to work. It took a couple weeks of feeding, drawing food back out, adding more enzymes, feeding again, and then the same thing all over again, but it worked. Once I had the herbs that worked his pain vanished. His liver and spleen, once swollen (filled with food toxins) went back down to size. When we added steroids, they initially benefited him because they reduced the swelling in his gut stopping some of the leaking and gave us enough leukemia control that he got another remission. Steroids also helped Samuel's energy level. Leaky Gut depletes the adrenal gland and the steroids helped prop it up and gave him back that energy he was lacking. Unfortunately, the steroids were a double edged sword because they initially helped with getting the swelling down inside his gut but they continued to eat the flesh inside. Another side effect of Leaky Gut was funky reactions to drugs because the liver is so overwhelmed that it cannot properly distribute them. Wouldn't this explain a lot? Samuel never had "normal" reactions to drugs and in the end, the drugs hardly worked. Not to mention that every pain med given was just another nail in his already mutilated gut. And then there is malnutrition and starvation because the liver cannot convert nutrients. . Nutrients do not do what they are supposed to do anymore because they are not properly assimilated so even though you may be feeding them, the body ignores them or takes them to the wrong place. Say spleen instead of bones. I realized what was wrong with Samuel's bones after he died. He had developed rickets. No one here could apparently diagnose it when he was alive. His bones in his ribs were being robbed of nutrients and as a result, his bones protruded so far outward that his ribcage looked like a mountain. The bones literally puckered. His spleen became a dumping ground that grew so full that I described it as a brick. Even though we saw blasts go down to less than 15k near the end, that spleen grew in spite of it. Later his lymph nodes also became a dumping ground and his vessels just stopped containing his blood allowing the toxins to leak everywhere.

Every time anything leaked into his blood from his gut, it provoked his immune system and it would seem to me that THAT is why once his gut started bleeding out, the blasts went insane. Everytime his gut had a little break, the blasts got better. Note insert ileus. Ileus was his body's defense mechanism saying, "Stop poisoning me!" Ileus is when the gut completely shuts down and STOPS functioning at all. This is different than a blockage and is extremely painful because the gut is NOT moving at all. It took between 48-72 hours to get his gut moving again. Enough of a food break for his body to detox a bit without adding more food to the burdens. It was his body's last defense against the poisoning. After a few days with no food, the gut started working, the blood toxin load was down and the blasts went down. That explains perfectly why we could expect his blasts to skyrocket when he had an ileus episode and go down quickly once a few days passed. When I was able to solely feed breastmilk, he felt great and he did great. But there was usually enough for a 24-48 hour period and then we went back to his normal diet which at that point, his body could barely tolerate even with the enzymes and acid. And of course, he wanted to eat food with his mouth which again just added to the demise! The only thing in the end that he could tolerate was breastmilk. If he had been able to get breastmilk 24/7/365, we might have had a chance. But how could he live like that? All he wanted to do was eat food. He ate "good" foods with his mouth the entire three months of last year where his leukemia was in remission. The combination of cesium, breastmilk and steroids bought him that time and he appeared to thrive. He certainly felt great. Right up until the steroids tore one hole too many. In the end, once I realized that the food was making him feel worse, I would tell him, "If you eat this, you will hurt." He said he did not care. He would just push his button and get more pain meds. Now I know why my mom dreamed of him in Heaven and all he was wanting to do was eat. How demonic is it that our one and only goal, for him to be able to eat with his mouth (and poop) was used to kill him? The weekend before "Passover" he had an episode where his blasts went over 50k then dropped to 15k in the days that followed. I was able to feed breastmilk all that time. However the day I started him on his regular diet and he ate table food, his blasts hit 70k. We never understood why that happened. Till now.

All the toxins in the blood eventually accumulate EVERYWHERE and I mean in the liver, spleen, lymphatic system and then the blood vessels cannot contain the blood anymore. Add broken gut leaking food, drugs that continue to ruin the gut, no immune system, and what do you get? Death. Vicious death. Samuel never had a chance. The damage was irreversible and all his immune system was trying to do was to manage it. It was trying to somehow dump all the toxins somewhere so he could survive. It was overwhelmed in the end. We were overwhelmed in the end. It is a miracle that we ever got control of it, much less, to have had three remissions when it was at it's worst point. I always suspected that his leukemia was a side effect of a bigger condition. In my mind now, that is confirmed. All I ever wanted to do was "fix" his gut. All that pain in the end of Samuel's life was gut related. It makes complete sense why when we stopped feeding him in his last few days, he initially felt better. After the Passover weekend, his spleen was so large that I could barely feed him 2oz. of food and half the time, I would have to draw that back out. He never had another ileus after that most likely because his body wasn't allowing food to go below his stomach. If we had been able to switch drugs from Fentanyl to Nubain or any other drug that would not affect the gut, I am certain that his death would not have been so vicious or painful. That drug 100x more potent than morphine literally finished ripping his gut apart. There was a window of opportunity to switch drugs but no one would listen. That is why the pain control was so difficult in the end. The Fentanyl was ripping his gut apart and trying to ease the pain of it's damage all at the same time. We would just get ahead of it by raising the dosage and it would not be but a day and he was screaming for help from the pain again. This could have been avoided. But once again, one would have to actually admit that Samuel's gut had "issues." I am certain that in my Onc's mind, this had to be about cancer. How could he sleep if he truly believed we were able to get leukemia in remission 3x without a barrage of chemo? Samuel is not some poor little boy who lost his life to cancer. He beat cancer several times over. What he could not win, was the battle over a broken gut, and people who plugged their ears when I screamed for help.
I am overwhelmed by the utter destruction I have just described and the way it was never managed or even thought of. As you can clearly see, it was a vicious cycle that could only end one way. Samuel should not have survived the initial relapse and yet, God preserved him for another nearly 11 months. God showed me how to care for Samuel's gut all those years! Samuel wanted to live. Even in the end, he wanted to live. But he also wanted to eat and be a normal boy and in the end, the only place he could do that was Heaven. No one here ever truly understood what happened to him. I was the only one who actively tried to understand his gut but trying to learn all this while you are trying to save someone's life is pretty difficult. That is what we are supposed to have doctors for. God honored me. He honored Samuel. God continually led us through and we never gave up. I wonder what I might have thought had He told me about the "holes" earlier. Would I have been so certain that we could get him into remission back in June of '07? Would I have thought we could do it again in December of '07 or January of '08 when things were even worse? Would I have enjoyed the three months of bliss we had this year thinking we had finally overcome? Would we have been defeated in June of '07 had I known? Would we have give up then? The only option was to never allow Samuel to eat food with his mouth again. Never use any conventional drugs. That wasn't possible nor did it fit in with our "quality of life" wish. God does everything for a reason and I don't think He kept this from me so Samuel could die. I believe He kept it from me so Samuel could live another ten months even though I now see, it was a losing battle. I don't know why Samuel's gut did not get healed. I just think back to all the people we went to for help looking for just one who would listen. When we finally found that one, it was too late and even she could not properly diagnose Samuel's condition. Every day Samuel was here was a gift. Every thing we were able to do for him that kept him alive and happy was a miracle. God honored every prayer and every good deed. Every day we live on earth is a day we will never get back. It is what we chose to do with that day that matters especially in light of eternity. Samuel chose to live every day and be happy. Even though he was falling apart. Even though he had pain most days. Even though he was dying. He chose to smile. He chose to embrace what he had.
When he relapsed, life because extremely difficult. Some days were hideous. But there were days that were miracles. Many of them. He is happy and free to eat to his heart's desire these days. We are free from the medical system that was so focused on cancer that it neglected how the cancer came to get there. I've learned a lot. A lot about the gut and a lot about cancer. I truly believe that cancer is a symptom of something worse. You find that, you get a foothold on cancer. Samuel's case was extreme. The damage to his gut was extreme. But, I was extreme in my love for him and willing to do whatever it took give him "quality of life." It was hideous. It was difficult. The amazing thing was that he stayed here long enough to prove that leukemia can be controlled and possibly cured without the toxic measures that ruined his gut. He proved it not once, but three times. When we chose to stop chemo in 2006, I looked for an example of perhaps another child who had success with alternative treatment. I never found one. I found plenty of adults but none willing to share every aspect of their story. Most are selling something so you have to wonder if they are truly trying to help people or just trying to make money. People forget, however, that MD's are selling something too. They sell you on diagnoses and medicine. It all comes down to who pays for it and how much it costs. Unfortunately, insurance companies don't cover some of the most important medicines so people choose not to spend the extra money that might save them from some hideous disease down the road. Many diseases start out as one symptom that nags a person long enough that they seek medical help to make it go away. Usually, it is a drug that covers that symptom but doesn't treat the cause. Later, another symptom develops. Then another. Then the awful diagnosis. When you hurt, when your body isn't working right, rather than covering the problem, find out why and fix it from the inside out. You will be doing yourself a favor. Disease is all about prevention.

Samuel is an example. Treating cancer CAN be done naturally as long as you are willing to find someone who can help you look for the "root cause" of the disease. A friend sent me an article about cancer being a "survival mechanism" which I read a few months back and thought was great.......if you have a tumor. But it doesn't explain blood cancer. Or at least it didn't until I found out about the holes in Samuel's gut. Flooding the blood with gut contents that should not be there would be a great way for a leukemia to develop. Back in 2004, a surgical RN on the East Coast explained to me the many ways the body has of "walling" something off. She said when surgeons have opened people up, they are often amazed at the body's ability to try to rid itself of foreign invaders. Well, how do you think they get in? Through some hole in the body. The biggest "hole" is your mouth. What you put into it. More and more medical professionals are realizing the gut/immune system connection, apparently just not the ones I was using. My Onc told me point blank that he knew nothing about the gut. Obviously! I also read another article about cancers that just disappear. Neuroblastoma for one. Hmm. Could it be that someone found the root cause? When Samuel was diagnosed he was given a 70% chance of "cure." No one would quote me odds after he lost his colon. We should have left then, but again, I did not know then what I know now.

Many have written hoping I would write a book or put some of these things we learned on paper. I am not at all led by the Lord to do that. There is TONS of info everywhere you look on treating cancer naturally. Most of the best research is covered up. It is hard for drug companies to make money on food and herbs. Many people shun diet alternatives and diet causes to health issues but for those who are truly looking for help, it isn't hard to find. People believe what they want to believe. I wanted to believe that leukemia could be controlled and cured with diet and alternative treatments. I still believe this today. I was willing to look at more than one aspect of medicine and cure. Remission was possible. Had Samuel's gut co-operated, I believe he would still be here running around and happy. He believed he would live. He did not fear cancer. What if more of us had that perspective when looking into cancer treatment? I still believe the cancer was the easy part.

Ask an Oncologist near you if a person can get leukemia into remission with diet and herbs and see what they tell you. I guarantee you the answer will be no. Perhaps they don't know. Perhaps they don't want to know. That was what we found with several Oncs. They said, "Keep up whatever you are doing," but never asked what we were doing. How is it possible for a person that is supposedly trying to cure kids to NOT be interested at all in how we achieved remission without harsh drugs? How is it possible for that same person to be so ready to let Samuel die? I have been amongst parents who don't want to hear about alternatives because they fully trust their MD's want to "cure" their kids. Or they don't want to change their habits. What I am talking about is adjusting your thinking. Thinking of cancer as a symptom rather than a freestanding disease. If you have cancer, there is something REALLY wrong in your body to allow it to get in in the first place. Unfortunately fear is a big factor in the business of cancer treatment. Everyone plays on it. What annoyed our MD's was that we never made decisions based on our fear of cancer. I made decisions based on Samuel's gut. I cannot tell you how many times I refused to allow chemo and forced them to deal with his gut first. It is all about fear and all about trust. Do you trust your MD, a mere person? Or do you trust God more? We all know what my answer is.

Treating the symptoms of cancer with poison is not a cure. Perhaps a few "get lucky" but I also wonder if they inadvertently found the root cause. There is a lot of research about leukemia and fungal infections. Nearly every leukemia case ends up getting antifungal medication at some point in treatment. Samuel did. How do you get fungus? Mainly from food. How does it get to your blood? Through the gut. There are a lot of unanswered questions and no two bodies react to "invaders" in the same way. Yet, all of these studies are mocked and shot down while countless dollars are given to "research" to make more poison. What would happen if cancer was treated as a condition of the whole body and treatment was tailored based on the disharmony in the body that brought it on? No two people are the same and I am certain that is why there are so many types of cancers. Yet, cancer treatment for each type of cancer IS the same. There is something wrong here and people need to start asking more questions BEFORE submitting to what is considered "normal."
What I am sure of, is there is not enough emphasis on prevention or on the gut connection. There are very few people willing to try alternatives first and even those who do do not know where to look for info. I cannot just sit here and do nothing. December was a month of the Lord opening my eyes to the truth. The truth about Samuel's life and his body. The truth about how impossible his situation was and yet we saw victories. The Lord has rekindled that desire in me to know more about the gut and the cancer link. The only way I can do that is to pursue formal education. So, I am. A person can do very little in the medical field without credentials and He has opened a door for me to move forward. My mom ended up staying with us over the holidays because of the snow and for the days she was here, I realized she needed some "help." She has a few drugs she needs to get off. And that has always been my thing anyway. If you need meds emergently, then use them, but plan to get off everything ASAP. Drugs just treat symptoms. Drugs cover symptoms and make you think you are healed when you are not. So I gave my mom some different things to try and I watched how her body reacted for the couple days she was here. She had a "cleansing" reaction which I immediately took care of with probiotics and her body responded in 30 minutes. Later, she had a reaction from NOT taking her blood pressure meds that she forgot at home so I gave her something for that. Her body responded again, in less than 30 minutes. And I realized again. How can you fix something if you don't look at it? Samuel's MD's spent less than 15 minutes with him at most visits with exception to my GI, and tried to solve his problems. They never did. They never saw half of the problems and NO ONE ever wanted to see his poop. How do you fix a gut if you don't look at what comes out of it? I was reminded by God that this IS my thing. There are a lot of people walking around with undiagnosed problems and it is not because the person doesn't know they have a problem. It is because doctors don't recognize them. Any parent looking for cancer treatment alternatives for their child needs to know it can be done and that it HAS BEEN done. They need to find me. And I need more education to be able to help. The Lord showed me that this is what I need to pursue. The Lord did not lead me down this path without a purpose in mind. I don't know altogether what that is, but I know if He has plans for me, they will be good ones.

Saturday, May 17, 2008

Shattered...

We want to continue to thank everyone for their love, support and generosity. We are overwhelmed with the outpouring of love and support. We have received many cards and letters this week that we will cherish forever. Many from people whose names we recognize who have followed Samuel's journey from the very beginning and many from people who have just "met" Samuel through this site. Thank you to those who have donated to Samuel's Medical Fund and have done or are doing fundraisers on our behalf. We appreciate everyone's efforts, sacrifices, time and generosity more than you know. And finally, thanks most to those who continue to pray for us. The days are so hard.

My Midwife calls the two week period after the birth of a child "The Black Hole." Everything changes and things feel chaotic until all family members settle into their new places, routines, etc. And for Mom, well, there is just more to do, nursing, changing diapers, staying up half the night, etc. It is all an adjustment and things just feel a bit crazy and off for a little while. Mark has referred to Samuel's death as birth in reverse and I can tell you that this is definitely the Black Hole. Only in reverse. I am sleeping for the first time in years. I am not up all night caring for someone, changing diapers, soothing them, cuddling them, or loving them. We just sleep. When I get up, there isn't someone who absolutely needs me to help them start their day. This house and it's occupants run on their own now. There is no monitor on so I know when Samuel is up and needing me because he cannot walk without help. There is no Land Before Time music playing in his room non-stop. Instead of a new life, there is a loss of life. There is a Black Hole. Getting used to a new life in the house is a lot faster and easier than getting used to a life lost. The emptiness I feel and sense are overwhelming that it literally does hurt to breathe.

I never left Samuel except when I was forced to. Either by surgery, sedated procedures or very early in 2004 when we were not allowed to stay in the ICU with him. Other than that, I never left him. I never went anywhere without him. If he could not go out, we stayed home. This week we went to Fred Meyer. The first time I have been there without him. Mark thought everyone would know without asking then because I never left him. It was a very sad trip to the market. I know there will be many more trips like these. Yesterday, we took the kids to Seattle to visit the Aquarium and take a Ferry ride. They have literally not been able to do anything fun with us in years. I missed Samuel so much. I saw little two year old boys with their parents enjoying all the sea creatures and thought of Samuel's life being snatched away at that age. After he turned two, all we had to look forward to was a vicious cycle of surgeries, 20 or so in less than six months. Fighting for his life, dealing with people who claimed they never saw anything like what was happening to him. I looked at these little boys and realized all that has been stolen from us. While the kids seemed to enjoy the outing, I cannot say that I did.
I looked up into the sky and knew that he is free from all this now and while that helps a lot, it does not fill the empty Black Hole. It does not seem to stop the neverending vicious cycle of horrible memories of some pain he endured or some long period of suffering he went through. I seem to just have flash back after flash back of some horror. And yet, while this pain feels unbearable, the memories of 2004 and that horrendous roller coaster ride was far worse. Not knowing if he would survive, if he knew who we were, the comatose state, all those surgeries, never knowing if he was hurting because he could not communicate, being told he was going to have brain damage, complication after complication, never knowing if he would ever come home. And worst of all, those times when I had to leave him. Those days when Mark and I changed places for a little while. Not knowing if he understood any of it. Leaving him and the worry and torment of that was MUCH worse than this. He was a little baby then. Yes, that was worse. At least now I don't have to leave him. In reality, he has left me. He had to go. That is obvious. We could not go on like that. That is obvious. God ended it. The aftermath is still horrible.

All these "fun" things we can do now were things we longed to do as a complete family. Not a broken one. We are doing these things for our children, not so much for us at the moment. They deserve to have a life now. But for me, it is so hard to move forward without the one I never left. I am certain he is watching. I don't think you can spend that much time with someone and just go to Heaven and lose interest. I know he is watching us all. But it still hurts, it is lonely, empty and cruel.

I spent a little time sewing this week. I would look at the place where Samuel used to sit and visit with me while I worked and he colored, sang songs or watched TV and tried to keep my tears off the merchandise. He was the inspiration for that business. Without him, it would have never been. He used to love to look at the carriers before they shipped. All these things made his life better. I have to move on. I know that. But right now, there is no joy in it. To be fair, there is not much joy in anything. I know one day, there will be joy again, but for right now, everything feels wrong. For now, nothing helps....for long. You can try to stay busy, but the pain finds you. I wish I could go somewhere and get away, but you cannot hide from the pain, run from the pain or even pretend it is not there. It is there. I wish I could think of something that would help right now, but pretty much my only options are time which will eventually take the stabbing pain away leaving only a dull reminder, or the rapture where we will ALL be reunited. Won't that be a glorious day!

We picked up Samuel's remains this week. If you were in denial, picking up your dead son's body in a 4x6x8 box placed in a gift bag of all things, will really drive the point home. We hope to move to a place we love, and plant a tree in Samuel's honor and place his body there. A Monkey Tree seems to be a great symbol for him. I still have his placenta in the freezer for fertilizer. For now, his body is sitting with his most loved stuffed toys in my room.
Samuel's cremated body weighs about five pounds. We figure he weighed about 35 pounds when he died at age six. He weighed 34 pounds at age two when he was diagnosed with leukemia. Sickening. At least I don't have to worry about him not growing right anymore. I am sure he will be the size God intended now. I spent some time looking back at pictures from the last few years and realized how much more mature Samuel looked on his fifth birthday than on his sixth. A year ago today, we thought we were going to make it. We thought all we had to worry about was his butt closing down. He was able to eat and poop and be happy in May of 2007. It felt good! Well, it felt good to me. Mark says the worry was always looming over him.

As hard as I tried to save his gut, it still died in the end. Samuel needed all those drugs in such high dosages because even though they are IV, you still need your gut to synthesize them. People with severe damage to the small intestine will still starve to death even in IV nutrition for this same reason. I talked to the Onc Clinic this week who said that Samuel was on enough Fentanyl to sedate an elephant. When he changed to dilaudid, they dosed it to match the ending fentanyl dose and then it ended up going up six times higher than when we started. And that in the end, was STILL not enough. The clinic had never seen anything like it. Obviously, their kids usually die from cancer, not from a rotting dying gut AND cancer. Hospice said that they would have to rewrite the records of dosing narcotics for kids after Samuel. Isn't that his life story? No one has ever seen anything like it? No one knew what to do with him. He and we are free from that now. Two days before he left us, he grabbed his port and tried to take it out saying "No more port medicine." He got that wish and more. Mark does not miss the port and none of us miss all the IV crap or that NG tube. No kid should have to live like that. I guess God felt the same way. He doesn't have to live like that now. I guess I would rather live with the grief and loss than the worry and helplessness not to mention frustration of asking people for help and them either refusing or not knowing what to do. It is miserable, just in a different way. And he still wanted to stay. That is the saddest part. He had such a miserable existence and he still wanted to stay. I understand why God had to stop this.

The glass jar we have been stuck in has been removed. We are free. Samuel is free. We just always hoped it would be together. I miss him so much but I don't miss what he went through. I would not bring him back to it for anything. I would not wish it upon anyone. I wish I could forget a lot of it. Time does have a way of white washing things and I look forward to the time when awful things from the last ten months are a lot more blurry. I just pray that the good things and times will become more clear. I pray that the Black Hole will someday not feel so dark, empty, lonely and cruel. Until then, I will continue to look up to the Heavens and remind myself that Samuel doesn't have a care about any of it anymore. He said it was worth it. One day, I know he will wipe all my tears away and I will not be tormented by this anymore. I long for that day.