Race

It has now been one whole week that Ethan has been off prednisone. Since he has been off, his urine samples go between trace and negative. We would rather he was negative everyday, but the doctors say a trace is still okay. In our experience however, a trace is just the first step of a relapse, but I am not going there yet!!!!

Today was a big day for our family, we signed up to run a 5k race, and I had high hopes of all 4 of us running together. As the race drew nearer, Ethan began to get more anxious and had a complete meltdown the night before the race. He said he did not think he could run or walk and just wanted to sit on the sidelines. We did all we could to encourage him to try to make it, even promising a slush at the end of the race. From the 1k mark on, it was pure torture for me, by this point we were walking the race, Jeff and Adam had gone on ahead of us. I am a competitive person and could not stand to see people passing me. I was holding Ethan's hand and literally dragging him it felt like. I did not want Ethan to quit, I wanted him to be proud of the fact that he finished the race, in spite of his medical issues. Ethan and I did finish the race together at 53 minutes and 39 seconds. Next year, I decided that I will run on my own!!!! I am glad we did it he says, now that he is done, but he doesn't want to do it again!!!!   

While I'M Waiting

Waiting, Waiting, Waiting, this has been my life for the past 7 years... Waiting is something that I am not very good at, but I am learning. I have come a long way in the patience department, but then again I have had to. Everywhere we go, we have to wait, we must wait at the doctors office, for lab tests, and for hours sometimes as we wait to see Ethan's specialists. I am very blessed that Ethan is very patient and handles waiting extremely well, he gets that from his father!!!

 When Ethan relapses, we must wait until his protein reaches a certain level before I can contact his doctors. This is when my anxiety levels go way up, now that I have been through this many times, I know what is coming. I find it very hard to sit by and watch Ethan suffer, as he gains weight rapidly from the protein and then from the prednisone. We are entering another season of waiting, now that Ethan has finished the prednisone part of his treatment. We must wait and see if his body can handle life without it. I wasn't sure I would ever see the day that he would be able to get off prednisone , we pray it lasts longer than a few weeks. We have also waited for healing for Ethan, every time he finishes treatment we wonder if this is the time he will be healed or outgrow this disease? But for some reason God has not answered our prayers for complete healing, he has however answered so many of our prayers and yours in ways that we never expected. One example would be, getting Ethan into the Nephrologist, when we were told that there were no openings for months. Only to receive a call half an hour later that they could see him the next day. Yes, that was a God thing!!!  

We wanted to say Thank You to the many people who pray for Ethan and our family, you have no idea how much this means to us. On those very hard days when I don't think I can go on, when I am left wondering just Where is God in all of this? I receive an email with words of encouragement or a phone call to say we are praying for you. Then it all makes sense, he is with us.... I received such an email this morning as I was expressing to a dear friend my mixed emotions. Joy on the one hand and fear in the other. This is what she wrote to me: " I know you are scared to believe things won't suddenly change for the worse. I will dare to believe FOR you! I will pray for a season of healing, restoration, refreshment, and REST for your family from this chapter in your lives. I pray that a new chapter will open soon and you will be blown away by JOY".   I am so blessed to have amazing friends!!!  Below is a link to a video by John Waller,"While I'm Waiting". Which was also sent to me by my dear friend and has been the inspiration for this post. May it encourage you also.

http://www.youtube.com/watch?v=Bb7TSGptd3Y

2nd day without prednisone

Just a quick praise item, Ethan had a fantastic day today!!!! Today was the first day that I did not hear" Mom, I don't feel well"!!!! We even went on a field trip that was about 45 minutes from the school and he didn't even feel sick. YEAH!!!! I am hoping and praying that this continues, it is such a joy to see the light and life coming back into his eyes. 

Statistics on Nephrotic Syndrome

Ever since I heard the words Nephrotic Syndrome, I became one of those people who devours any and all information that I can get my hands on. Our doctor actually instructed us not to go home and get on the computer, in his opinion there was too much information out there that would only worry me. Me, Worry??? When Ethan was diagnosed, we asked how common is this? Since we had never heard of this and neither had our family doctor. We were told that NS is supposed to be rare, with 1 out of 100,000 children diagnosed each year. That lead us to ask our next question, what number was Ethan? We were absolutely shocked and amazed to find out that Ethan was number 12 that year alone in our area. We could not believe that so many new cases were being reported in a disease that is supposed to be rare? Since there is no known cause or cure, we are left with few options for treating this disease. We were also told that Ethan would eventually outgrow this, but when? WHO KNOWS!!!! It could be tomorrow, next year, when he is 15 or 20, they just don't know!!!! Which is very hard for someone like me to comprehend, I like all my ducks in a row, so to speak. This not knowing and waiting is so very hard for me, but then again, some say God is trying to teach me patience. Really God, can't there be another way?? 

I finally came across some recent stats which I found very interesting. As of 2009, 5 children out of 100,000 will be diagnosed with Nephrotic Syndrome each year. 15 out of 100,000 are currently living with Nephrotic Syndrome. Surprisingly, we have not met any other children who share Nephrotic Syndrome with Ethan. Until that day when Ethan is healed, we will keep praying, trusting God to take us step by step and hour by hour and even minute by minute!!!!

A good first day!

I am feeling very encouraged and happy at the moment, I just had to share it with you. This morning as Ethan was in his class at school, talking to his friends. I saw a glimpse, of the old Ethan, the one that exists off of prednisone. I saw my son, smile and joking with his classmates for the first time in 6 months. If you haven't experienced life on prednisone, you have no idea what I am talking about. But there is an obvious change in Ethan when is on and off prednisone. When I went to say goodbye to Ethan he said to me"See you, wouldn't want to be you", as he looked up at me with his mischievous smile. To know Ethan, this is something he thinks is funny and used to say and hasn't said to me in a very long time. For the first time in over 6 months, I left the school thinking, this was going to be good day! I had less anxiety as I went about my day, instead of constantly looking at the time and phone to see if I had missed the school's call. 

To those who are healthy, this might seem like such a small thing, but it such a huge thing in our world. My Mom best explained it to me, as Jewel's, God's gifts to me. A simple reminder in the smallest thing that God is still with me, encouraging me even when I may doubt that he is there.   The following verse has taken on new meaning for me and it has become one of my favourites.

Isaiah 39: 29-31

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall;but those who hope in the LORD will renew their strength. They will soar on wings like eagles;they will run and not grow weary, they will walk and not be faint.

A day in the life!

Everyday, I hear the words, Mom, I don't feel well!!! I must confess that I have begun to despise those words. To me they mean I will again have to force Ethan to get up, get moving, eat something and all the while hoping he will make it to school. I am thankful that I don't have a job outside the home, I doubt I would be there very much. Everyday, I am faced with the decision, how sick is he? Can he make it to School today? If so, how long will he stay, and what can I get done in the quickest amount of time before the School calls me? For some reason, Ethan does not enjoy School, even though he is very good at it. His teacher is very proud of him for how little he does complain in class, but she can tell that he lacks the joy and zest that the other children do.  Even on those days when Ethan doesn't go to School, he still finds it very hard to engage in normal activities. He is either complaining of stomach pains or of feeling very nauseated. As we have now completed the prednisone part of his treatment. We are praying that God will give Ethan, and us as a family, a new "Normal"!!! One without doctors, lab tests, medications and side effects. 

Last day of Prednisone

Today was a milestone in Ethan's treatment, I gave him his last dose of prednisone this morning. YEAHH!!!! I am so happy yet so very nervous. So many questions and anxieties haunt my mind. As I reflect back on the last 6 months of our journey. I must confess these have been the most difficult that we have ever been through. Ethan was much sicker than he has ever been, despite the doctor's reassurances that Ethan would sail right through treatment. Ethan has fought the daily side effects of high doses of prednisone, weight gain, insomnia, mood swings, hair growth, bone and joint pain, stomach pains,lowered immune system. 

When it became apparent that the prednisone was no longer working, a chemo drug was thrown into the mix. We had no idea what to expect on chemo, thankfully Ethan has not lost his hair. He has fought daily nausea, constant stomach pains, fatigue, even more lowered immune system, and in my opinion lacks the zest a normal child would have to enjoy life and activities. He often has to sit out and watch as he complains that he doesn't feel well. Every week Ethan has to get blood work to make sure his white blood cell counts are okay. He has endured so much and for the most part he handles it very well. Please continue to pray for Ethan over the next few days and weeks. I will keep posting about how he is feeling and how things are going as the days go by. 

How it all Began- August 15, 2002

To go back to the beginning to where it all began, we were cruising along, enjoying our life, completely unaware that a devastating illness with our young 17 month old son would rock our world. As I look back on those days leading up to Ethan's diagnosis, I remember noticing that Ethan began to wake up with dry diapers. At first I thought this was a sign that he was ready to start being potty trained, little did I know!!! As the day went on, he still wasn't wetting his diapers as normal children should. It was also summer, very hot, and he was drinking lot's of water, something that is normally good, but yet another sign that something was wrong. When Ethan began to outgrow the size 4 diapers I had just bought him, then quickly the 5's and then the 6's. I went to see our family doctor, explained my concerns about Ethan's recent weight gains, but was told that he was fine, and sent me on my way. Only a few short days later, I would return once again, as Ethan was waking up in the morning with very puffy eyelids. He could hardly see out of his eyes, as he stared up at me from his crib. Again, I was told he was fine, it must be allergies, and that I had introduced something new to him to cause such a reaction. I was told to give him some Benadryl, and was sent on my way again. I knew that I had not changed anything new, I already washed all the boys clothing and bedding in Ivory Snow due to their eczema. We were confused with the eyelids swelling, as it would get worse at night and when he was napping, during the day it would seem to lessen. 

August 15, 2002, Ethan woke up with his eyes so swollen that they were completely shut. His eyelids were so huge, they looked like golf balls over his eyes. It is a sight that I will never ever forget. I had never felt such fear, as I rushed to pick him up and then to the phone to call my Mom to come and get us. We didn't have a doctor's appt, they weren't even open yet. But we showed up on their door anyway. I thank God that my Mom came with me, as I was turned away 2 times before, I needed someone to be with me, to reassure me that I wasn't going crazy. Something was wrong!!! She firmly told the Nurse that something was wrong with Ethan and we were not leaving until the Doctor took a look at him. Thankfully, she did listen and the Doctor rushed right in to see us. He took one look at Ethan, went into his office and called our local pediatrician. He wanted us to come over to his office right away, he was waiting for us. This I knew was not good, as happy as I was to finally be seen, I had a sense something was coming.... In the waiting room Adam, 3, at the time, decided that now was a great time to have a nosebleed, again, thankful my Mom was there to help me out. Ethan and I headed into the Dr's. office for an examination. He took one look at him and told me, his Kidney's are failing, you need to take him right away to the hospital. I will call ahead and you can go straight up to pediatrics, Ethan ended up being admitted to the hospital for 5 days. When he was admitted, Ethan had gained a total of 10 pounds of fluid, his blood pressure was high, his breathing was fast and laboured.  Only a few short hours later, we learned that Ethan had what was called, Nephrotic Syndrome. Something, we had never ever heard of, we were told Nephrotic Syndrome was rare, 1 in 100,000 children will get it. We were also told that this was an autoimmune disease. To our dismay, the only treatment option was to put Ethan on high doses of prednisone. Prednisone I knew was not a good drug, My Grandma had been on it for many years. Feeling bold, I told the doctor that I did not want him on this drug. He said, you have no choice, it is this, or his Kidney's will fail. To say we were shocked, devastated would be an understatement. In the months and years that followed we would learn just how hard living with a child who has a chronic illness would be. It affects not only the child, but the entire family.

What is Nephrotic Syndrome

 The kidneys are two bean-shaped organs found in the lower back. Each is about the size of a fist. They clean the blood by filtering out excess water and salt and waste products from food. Healthy kidneys keep protein in the blood, which helps the blood soak up water from tissues. But kidneys with damaged filters may leak protein into the urine. As a result, not enough protein is left in the blood to soak up the water. The water then moves from the blood into body tissues and causes swelling.

Both children and adults can have nephrotic syndrome. 

Childhood nephrotic syndrome can occur at any age but is most common between the ages of 1½ and 5 years. It seems to affect boys more often than girls.

A child with nephrotic syndrome has these signs:

    * high levels of protein in the urine, a condition called proteinuria

    * low levels of protein in the blood

    * swelling resulting from buildup of salt and water

    * less frequent urination

    * weight gain from excess water

To diagnose childhood nephrotic syndrome, the doctor may ask for a urine sample to check for protein. The doctor will dip a strip of chemically treated paper into the urine sample. Too much protein in the urine will make the paper change color. Or the doctor may ask for a 24-hour collection of urine for a more precise measurement of the protein and other substances in the urine.

The doctor may take a blood sample to see how well the kidneys are removing wastes. Healthy kidneys remove creatinine and urea nitrogen from the blood. If the blood contains high levels of these waste products, some kidney damage may have already occurred. But most children with nephrotic syndrome do not have permanent kidney damage.

In some cases, the doctor may want to examine a small piece of kidney tissue with a microscope to see if something specific is causing the syndrome. The procedure of collecting a small tissue sample from the kidney is called a biopsy, and it is usually performed with a long needle passed through the skin. 

The condition most commonly associated with childhood nephrotic syndrome is minimal change disease. Doctors do not know what causes it. The condition is called minimal change disease because children with this form of the nephrotic syndrome have normal or nearly normal appearing kidney biopsies. If a child is diagnosed with minimal change disease, the doctor will probably prescribe prednisone, which belongs to a class of drugs called corticosteroids. Prednisone stops the movement of protein from the blood into the urine, but it does have side effects. These include, increased hunger, insomnia, mood swings, suppressed immune system.

When protein is no longer present in the urine, the doctor will begin to slowly reduce the dosage of prednisone. Some children never get sick again, but most experience a relapse, developing swelling and protein in the urine again, usually following a viral illness. However, as long as the child continues to respond to prednisone and the urine becomes protein free, the child has an excellent long-term outlook without kidney damage.

Children who relapse frequently, or who seem to be dependent on prednisone or have side effects from it, may be given a second type of drug called a cytotoxic agent.