Beads of Hope(R) & one families trials

It is a long one and sad at times so grab a cup of coffee and some tissues.

I met my husband in March of '95. He was in the academy to become a state trooper. We had the world ahead of us. He graduated and asked me to move in with him with the understanding that we weren't coming back to KC. That was hard. I was an only child, my dad was an only child and both his parents were dead, my mom was from England and her family still lived there so to leave my parents and move 2 1/2 hours away was huge. We got married in '96, bought my dream home 2 story Victorian home built in 1909.

We had Jakob in '98. Then we had Logan in '99. We were excited 2 boys.

In June of '00 Casey came home from work and said he was putting in for a request for a lateral move back to KC. I asked why??? He said he didn't know we just needed to move back. I didn't want to leave but trusted he knew what we needed to do. I tried to stay with the house until it sold but after a month of Logan being sick and the Dr we went to being 1 1/2 hours away we moved to KC in a tiny apartment. After about 4 months I couldn't take living in 2 places. We bought a house and move in Oct 31 2000. We sold our house in Nov 2000. I know God was watching over us.

We no sooner got settled in our new home and Logan came down with another ear infection. You see he had them every month to the day like clock work since the day he was born. This was no exception.

In Dec 2000 Jakob started complaining of a tummy ache. We wrote it off as his way of getting attention with how crazy our life had been the last 6 months. Jakob had never had a cold, runny nose tummy ache. He was the perfectly healthy child. Everyday he continued to complain of a tummy ache, then one day he was putting a movie in the VCR and he grabbed his back and fell on the floor complaining of pain.

We took him to a Dr that was recommended to us. She ordered and X-ray only to have noting show up. Told us to take him off all milk products as he was probably lactose intolerant. I asked how can you wake up one day and not be able to have milk???? 2 weeks past and Jakob was not getting any better. Ordered another X-ray still nothing. C-T scan still nothing.

Finally after 6 weeks the Dr ordered blood work on a Thurs. We went to have the blood drawn and the Dr office forgot to fax the paperwork over to the Lab. We got up Friday morning had the blood drawn only to be told we had to wait until Monday to get the results. Jakob woke up from his nap that day with a 103 fever and pretty out of it. We called only to be told to wait till Monday when the results came back. I told the nurse listen I have gone 6 weeks without any sleep and child that is sick I am not waiting you need to get him in now!!! She put me on hold and then came back and told me to bring him in the Dr wanted to see him. We arrive at the Dr office only to be told we were going to have to wait until they were done with the other patients. I looked around and there were 3 others so I thought no big deal. The nurse then told me no I would have to wait until around 5:30 when they were done with patients. I picked up Jakob and started to leave. The nurse asked me where I was going. I told her if I was going to have to wait I would wait at Children's Mercy hospital ER. A nice lady stood up and said she was there for a well child check up and we could have her spot. I wish now I would have gotten her name. We were taken back to a room and when the Dr opened up the door took one look at Jakob and told us to get him to Children's Mercy now.

We arrive at Children's only to be told we had to wait 4 hours. I said you are kidding me right? She said unless you have a referral. We did and they got Jakob in right away. They tried to take blood from him but he was in such bad shape it took the hear ER nurse and the Trauma Helicopter nurse 9 times of sticking him before they finally got a vein. By this time it was evening and no one had dinner so Casey took the boys to find something to eat. While he was gone the Dr came in and told us that they didn't know what Jakob had either he had Leukemia or a virus that was mimicking Leukemia but they wouldn't know until they got his blood stable.

We were admitted that Friday night. Over the weekend Jakob was given 2 bags of whole blood, 2 bags of platelets and 2 bags of plasma. On Sunday they did a bone marrow aspiration and a spinal tap. Only no doctor was there to read the results. So Monday morning it is Jakob's 3rd birthday, January 22, 2001. He wakes up and is feeling great. We look out the window at 10 am to see a team of Dr's heading towards us. It was then that we learned Jakob had Leukemia but they didn't know which kind yet. They came back at 6pm that evening and told us he had Acute Lymphoblastic Leukemia and he would have to do 3 1/2 years of chemo everyday. They placed his port a cath the next day and we began chemo. That is when the tornado struck our family and hasn't stopped.

Little did we know that he would have many reactions to the chemo. His main chemo drug made him lose all muscle control so his intestines and colon stopped working for 4 1/2 yrs. Plus to make the chemo work better they place the kids on major steroids so all they want to do 24/7 is eat.. So you can imagine eating 24/7 and not being able to go poop. He went from wearing a 3T to a 6x in 2 weeks. So we would be admitted for 3 days to clean him out, go home for a day, back in clinic for a different chemo, home for a day and then back in the hospital for 3 days. This went on for 6 months in and out of the hospital. Finally we got to where we started doing the cleaning at home.

6 months after Jakob was diagnosed Logan was diagnosed with hearing and speech problems. We found out he couldn't hear. So in for surgery he went and we started speech therapy.

In the mean time Jakob stopped taking his meds so we had to have an NG tube placed down his nose. He learned to throw it up so we were constantly down at the hospital putting it back in. There were many months that Jakob couldn't go outside as he had no immune system. If Casey and I went any where we would have to sanitize ourself before we could come near Jakob. No one was allowed to come over as they may be carrying something and make Jakob sick.

Nov 2001 Jakob falls off the couch and breaks his collar bone. Also that month I have a miscarriage and lose our 3rd child and the same day we have to put our dog down.

Fast forward March 2002 Jakob goes into the hospital with Mono, Colitis's, CMV and bronchitis. He is in for 1 month with a fever and neutrapenic. They want to take his gall bladder out as the Colitis's is causing even more liver damage. We elect to not take it out as he is too young. His fever finally breaks and we get to go home. We are home for 6 hours and find out we are pregnant. Jakob spikes a fever and he has to go back to the hospital. Only to have the nurses tell me that because I was expose to CMV while I was pregnant the unborn baby could be born with hearing, vision and mental problems. Great all I need 3 children with health problems. I really start to question my faith and God. I did for 9 months struggle to accept God's plans.

I call my obgyn to tell them I am pregnant and that I have been exposed to CMV. I go get tested and on the way back to the hospital where Jakob is, I get in a car wreck and crack open my head and break my hand. Do you not think I am really questioning God and his plan????? I end up with stitches across my forehead and down the side of my head towards the back.

I receive the test results back that I am CMV negative. Which you would think would be a good thing. Oh No!!! That means I have to be tested every month as if I develop it any time I am pregnant that is bad for the unborn baby. Thank God I never developed it. Cambridge was born happy and healthy Dec 2002.

Mean while Jakob is still suffering from the many side effects of chemo. He has had so many blood transfusions he is allergic to the A protein in blood. Goes into shock and they have to resuscitate him. He is allergic to 5 antibiotics by now as he has been so sick while on chemo. and can't be on any more antibiotics as it is causing a c-diff infection. Still to this day we have to be careful what meds he is on so we don't get another c-diff infection which if you don't know if highly contagious and extremely hard to get rid of.

Mean while Logan is still battling hearing problems and goes in to have tubes put in his ears and take out his tonsils. Not a big deal right??? Oh no a main artery doesn't get cauterized and the anesthesiologists leaves before we are discharged. There is no one to put him back under and cauterize the artery. They call the main hospital to have him transported there and it get stuck in traffic. By the time he gets to the main hospital he has lost 2 ltrs of blood and is going in and out of conscious. The Dr doesn't want to put him back under because if he continues to throw blood up he will aspirate and die. And my argument is if you don't put him back under he is going to bleed to death and die. What choice do we have. He is in God's hands not ours. Glad to say that after signing waivers they put him back under and he is here with us today. Logan has had 3 surgeries he can now hear but has Central Auditory Processing disorder.

2003 Jakob is diagnosed with Celia Disease. Basically his body can't filter out anything he breathes in so he has constant bronchitis, pneumonia, sinus infections.

2004 my mom is diagnosed with a brain tumor.

10/05 Jakob slips on chair and hits his eye on the drawer of the desk and cracks open his eye. He has to go get stitches in his left eye.

8/06 Jakob was placed in casts on both feet as he has continues to complain of pain in walking since April.

9/06 Jakob falls and breaks his wrist.

10/06 Jakob is diagnosed with Reflex Sympathetic Dystrophy. Which basically means his Central nervous system has freaked out due to all his body has gone through. 10 surgeries, countless infections, being Diagnosed with Celia Disease, broken bones due to weakness from the chemo. So now his body fires off pain signals for no reason. It is in his right arm and hand and then from the waste down. The pain is described as pouring gas on yourself and lighting it on fire and letting it burn. There are days he can't walk due to so much pain we can't even put his clothes on as it hurts to have anything touching him. There is no cure or treatment that works for any one person. It is strictly trial and error. There were months we had 7 Dr appts in a week. RSD causes short term memory loss and Depression. In children it causes them to commit suicide. There has been several times that Jakob has asked to die as he doesn't want to go on and live like this.

1/07 Jakob falls on ice and breaks his wrist again. Logan falls and breaks his fingers.

10/07 I fall on field trip and break my wrist.

3/08 Cambridge breaks her ankle outside playing on trampoline

05/08 Jakob slices open his finger down to the ligaments & tendons. Praise God he didn't slice those.

6/08 my mom has 2 strokes and has bleeding on the brain. We are still awaiting results from tests

So since 2000 we have moved 4x's, and I haven't even listed half of what has happened to us. This is all I have written down. I know if I went back through all the medical records and talked to people I am sure I am forgetting alot. My brain just couldn't store any more. There are days when I sware we have a black cloud over our head.
Anytime Jakob goes into the Dr they start asking me ?'s about this or that and I look at them and say I don't know. I then get the weird look how could you not know. I proceed to tell them if you notice that is volume 8 of his medical records you have in your hands. That is just things that we have come to Children's Mercy about. That doesn't include all the other Dr's we have been to or my other two children. And that doesn't include everything that has happened to myself, my side of the family or my husbands. please don't look at my like I am a bad mom because I can't remember. You come live in my shoes these last 8 years and lets see what you can remember. They then have a twinkle of understanding.

We have been told Jakob will have another cancer at some point in his life due to the type of cancer he had, his age of being diagnosed the first time and the many side effects he has.

So......
My reason for writing this blog is because it only goes to show that no matter what you are dealing with remember 1 Peter 1:7. "These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold and your faith is far more precious to God then mere gold. So if your faith remains strong after being tried by fiery trials, it will bring you much praise, glory and honor on the day when Jesus Christ is revealed to the whole world".

I honestly don't know how I would have survived everything if I didn't have my faith in the Lord. It is him that provides me with strength every day. And I need it. These trials have only brought my husband, the kids and I closer together and it is through the Lord that Beads of HopeÒ will become successful. It may not be the way you or I judge success but it will be in the eyes of the Lord.


So no matter what remain faithful and ask for strength everyday and he will bring you through it.

Visit my site and see how Beads of Hope(R) has grown http://www.beadsofhope.com/