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Adrenoleukodystrophy
At the age of 2 Dylan was diagnosed with Adrenoleukodystrophy , as was Jacob my 4 month old baby. This is a life threatening disease affects boys . The females are carriers and so I was the one who passed this awful disease to all three of my children. Aah...I know everyone is thinking including myself why in the world would you have another child knowing this.
Well after I had Jacob I wanted to have my "tubes" tied , but my doctor said I was still very young (22) and I may want to have more children down the road. Well we really weren't planning on it after knowing about Adrenoleukodystrophy , but I truly believe God had other plans. Four years after Jake was born we found out that I was expecting once again. Thus is we have our wonderful , delightful Owen!!!
We prayed that he would not have the same horrific disease as Dylan and Jake but it turned out he did.
What a nightmare , I thought for sure God would not let this happen a third time .
So , as the years went by we had many doctors appointments ,neurologists, endocrinologists, and hematologist. Always scared to death about each appointment , would this be the one where they find something wrong? Time after time the exams went great ! No signs of destroyed Milne , Nero exams were well. Then it smacked us right in the face in April of 2006.
April 2006 we had a new neurologist and needed MRI's again. Our worst fear had happened . Owen had demylenation on his MRI and Jacobs was slightly "abnormal".
I will NEVER for get this day , after the boys were done with their MRI's the doctor needed to talk to us. Our hearts sank , Jay and I began to cry , our babies were very sick and mostly would not make it . She told us Owen's MRI was very bad a lot of deterioration of the mylin. He would have about six months to live. This was just a month before his 5th birthday . She wanted to send Jacobs MRI to get a second opinion because there was just a faint touch of what looked like some deterioration. We soon found our self's having more test done. We had to have all three boys HLA typed. Decide weather we wanted to have a bone marrow transplant. Our doctor referred us to the University of Minnesota. So we packed up and headed to Minneapolis. Once we arrived we had yet another round of test. The professionals told us Owen would be a good canadite for transplant , but we had to act fast and find a donor. They also told us Jake's MRI looked normal ! We headed back home and started preparing for the worst . So many thoughts go through your mind , will they find a suitable donor ? When will we find a donor ? Would it be too late?
Finally in June they called , they found a 4 out of 6 double cord blood !!! Not a perfect match but time was of the essence. We were told that Owens transplant would take place on Aug. 4 2006. So we did some last minute vacations took the boys camping went to Missouri and visited my family. We decided it would be in the best interest of Dylan and Jacob if we left them in Missouri with my family. This way they could enjoy the rest of the summer and we could focus on Owen. Easier said than done.This was a very emotional time for ALL of us. It was so hard saying goodbye because we ALL knew it may be the last time they would see Owen alive.
We arrived in Minneapolis on July 17 , 2006. That week we had what is called the work up week. We attended classes about BMT and what to expect. Talked to all the doctors . Then once again a smack in the face. The doctors told us 2 days before Owen was to be admitted that they found a 6 out of 6 match for Dylan and Jacob in case they were to need a transplant too. So what this means is they wanted to know if we still wanted to proceed with the 4 out of 6 cord blood match or wait and go with the better of the two , which would be the 6 out of 6 match. Once again the tears began to flow , what were we supposed to do ? Of course the 6 out of 6 living donor is a much better match , a 100% match , but they still had to locate the donor and this would take time. TIME WE DIDN'T HAVE. There was a part of us that would have loved to pack up and go back home and pray it would all just go away , but in reality we knew we had to go through with our original plans.
We stuck with the 4/6 match and enjoyed our last days before being admitted into the hospital. We fished the great Mississippi River and Owen caught a HUGE catfish! We went to the Mall of America and walked the underwater Aquarium . We had lunch with Ronald McDonald . We went on a Long walk along the Mississippi and we prayed!
That night was dreadful , for we had to be at the hospital at 5:30 a.m. I woke up and put on some coffee . I ran a tub of water for Owen , because he had to be cleaned with a special soap the night before and that morning to be sure no bacteria was on his skin. I have to say this was the worst part for me. I had to wash his skin and prepare him for his journey. I woke Jay and Owen up and that was hard too. Neither one of them wanted to get up , finally we were ready to go. As we walked to the Hospital we held each others hands very tight not wanting to ever let go.


Everything pretty much seems like a blur after we walked into the hospital that morning.I remember getting Owen changed into his hospital gown and reading to him quietly while we waited for them to take him down to the O.R.
He was so brave as the doctors and nurses came to wheel him away. Only one of us was allowed to walk to the O.R with him. Jay wanted to , so I gave Owen a big kiss and hug and told him I'll see him in a bit. I was so scared and as I walked to the waiting room. A few moments later Jay met me in the waiting room and we both started to cry. This I think this is when it really hit us , there was no turning back now. We had hope and pray everything would be ok. Owen was in the O.R to have his hick man line put in.
Hickman Lines are inserted through the chest into a
main artery, which leads from the heart up to the neck, and through the main blood
stream. Medications can be administered into this so that they run straight into the
blood stream and blood tests can be taken without the need of continuous needle
procedures.
Finally the nurse came and told us Owen was in the recovery room. We went to the recovery room and hugged him and told him how brave he was. We also told him his new line will be so much better , now he won't have to get poked with all those needles.
Soon we were on our way to 4a, the BMT floor.Right from the
beginning we had to get into routine of washing and drying our hands before entering Owen's room. Owen was asleep when we made are way to his room. When he woke up we were all settled in his new room. He was very upset , we were not able to leave his room at all. His neck was hurting from the hick man line . He didn't understand why all this was happening. It was just so heartbreaking. He had gone down
to O.R all brave and healthy looking and came back looking a completely different
child.
Owen received his first dose of chemo July 26 {busulfin} through i.v. at 4a.m. in the morning , this ran for 2 hours every six hours for four days.Then fostphenyion on the 30th , the 31 cytoxin through i.v. every 2 hrs. , then every 4 hrs until August 3. August 4 was transplant day.
During his chemo treatments he would spike such high fevers and start shaking uncontrollably. This was so terrifying to see. It was also hard because only one of us was allowed to spend the night . It was hard because it seemed like either way we NEVER really got any sleep. Who ever spent the night at the hospital was usually up because of all the throwing up and diarrhea and just the fact that Owen didn't feel good. This was hard too because it is during this time that he needs all the hugs and love , but in the same time you don't want to get him sick with any of your germs. If you were the one to go back to the Ronald Mc Donald house you had a hard time getting to sleep too , just wondering what was going on at the hospital. We felt like zombies.


August 4 , transplant day. My parents arrived the night before with Dylan and Jacob.
Owen was so excited to see his brothers , and to show grandma and grandpa his room. He also shared with everyone his stories , how he went fishing at the big river and caught his HUGE catfish! We were all so happy to be together , it was nice having my parents their too. This is such a hard ordeal to go through. It was nice too because it gave Jay and I a little time to be alone and talk about are feeling without little ears around.During Owens transplant Jay and I were able to stay with him , Owen slept through the whole thing. When he woke up there were ton's of balloons and gifts from everyone . He was very excited , he now has two birthdays! The one I gave him on the day he was born and his gift of life birthday. The next day after transplant we celebrated in Owen's room. My parents and the boys and Jay and I. We had to take turns going in to see him only three at a time. So three of us would go in and three of us would stand in the hall watching through the glass window. Owen seemed to be doing very well , laughing and playing with his brothers and showing off for grandma and grandpa :]...(taking his meds , willingly)
The next day Aug. 7 Dylan and Jake were due to have their MRI's updated again. So we had them done in Minnesota. My mom and dad stayed with Owen while Jay and I took the boys for their MRI's. After the MRI's I went back to Owens room and my dad and Jay took Dylan and Jake out for lunch and some sight seeing. That night Jay and I and Dylan, Jake and Owen had dinner together in Owen's room :] The docs said it would be alright. The following day my parents and the boys had to get back to Missouri. Once it was hard to say goodbye. Owen Really didn't want them to leave.
The next few weeks were the toughest. This is when the chemo really starts showing the full side effects. Owen was severely sick throwing up and having diarrhea , mouth sores , hair was all gone. He threw up so much the blood vessels in his eyes popped , and the whites of his eyes were bright red.


MRI Results
Once again the doctors needed to talk to us about the results. Right away we knew this was not good.Right away we Jacob ! His MRI must be bad , because they Initially thought they saw something and Dylan was supposedly too old to have the cerebral form. Well , it turned out it was Dylan's MRI that showed "mild" deterioration. Once again we had to make a decision weather or not to proceed with a transplant. This was beyond overwhelming. Of course we wanted Dylan to have a second chance at life so we said absolutely to a transplant. But on the other hand we were still trying to survive one transplant . We didn't know if Owen was going to make it , he was so very sick. He couldn't keep anything down we had to have a NG tube placed in for him to take his meds. Which he DID NOT like , and would pull it out.
It was so frustrating , then Owen started showing sings of GVH{graft verses host} disease. This was not good at all. What this meant was his body was recognising the "new marrow" as forgein and was fighting to get rid of it !! What a nightmare.
His bloodpresure was sky rocketing and his body was retaining fluid. We had to act fast , they told us he could go into cardiac arrest.Mean while we had to start preparations for Dylan's transplant. Aha...what a load to carry.
We didn't want to tell Dylan and Jacob about Dylan needing a transplant over the phone , because at this time they were back in Missouri. We told my parents and sisters. We didn't want them to say any thing either. This was so difficult too.
We ended up calling and telling the boys we thought it would be best if they came back to Minnesota with us so we could all be together. So Jay set up a day where he drove halfway and Sandy and Ron drove the other half and they would meet in Iowa .
This way Jay would only be gone a day and I wouldn't have to be by myself with Owen in case something were to happen during that time. Oh , it was very nerve racking to say the least. Finally Jay and the boys made it back and I could tell Jay had already told them the news.


The following weeks were trying. Owen was released from the hospital and readmitted that same night. He ended up with a blood infection from the infusion he receive just before he was released. Right away I called my parents because I dint think there was a way we could do this on our own. Dylan was to be scheduled for his work up week , Owen was back in the hospital and we had Jacob to look after. My parents arrived the next day , sooner than I expected. But anyone who knows my dad knows when you call in a time of need he is right there !
When my parents arrived Owen was stabilised and asking for some root beer , so of course grandpa went searching for a root beer for Owen :]My parents stayed a few days , but we decided it would be best if just my mom stayed and my dad went back home so he could work. Now this was hard for them because my dad did not want to go because he was seeing how difficult this was becoming.Jay and I being torn between three kids ALL needing are attention. Well after many test Owen was diagnosed with having type 2 GVH , not good , now this means his body is attacking his stomach and organs. The doctors stared treating this aggressively with steroids and skin lotions.
Thankfully we saw improvements and he was able to be released after about a week or so. I honestly cant remember , he was released with a feeding tube because he couldn't keep anything down , food wise . A few days after Owen came home Dylan was admitted into the hospital for his hickman line and his chemo and then transplant.


Now things were really getting hectic . Dylan's transplant was exactly two months apart from Owen's. October 4 , 2006. My mom would stay with Jacob at the ronald mc donald house and Jay and I would again take turns staying at the hospital. This was beginning to wear us out. Owen was in constant need of supervision , needed meds every couple of hours and hooked up to his feeding line , trips to the clinic for his check ups. Dylan was having all the same side effects from the chemo as Owen did and both of us wanted to be there with him too. Evan with my mom there it just didn't seem like enough. Then Jay had to go back to Ohio for work so we could keep our benefits. So that was nerve racking , he would drive all night , go straight to work then go to our house and sleep just to drive back to Minnesota bright and early the next morning. My sisters would go to my house and have food there for Jay and visit for a few minutes , and then leave so he could rest. I would be worried about Jay driving , didn't want him to get in a accident , then I would worry because I was there with all the boys. Evan though I had my mom , but she couldn't take care of Owen because we had to go to classes for that. So she would stay with Dylan , it was just a mess. One of the trips home Jay brought Jessica and Layla back with him. This was nice , but crowded.
Soon they were both released from the hospital and we were all back at the Ronald Mc Donald house. My mom and Jessica decided it was time for them to get back to their homes . Layla had her doctors appointments and my mom had to get back to my dad. My dad had his own health problems going on at the time too. So once again we were on our own. Things went smoothly for awhile , but then Dylan ended up with a fungal infection , that landed him back into the hospital for three weeks !
Dylan ended up being re released on Thanksgiving Day ! What a blessing to be thankful for. Sandy and Ron and Tanner and Bailey came up for Thanksgiving too. It was a very memorable Thank giving alot of fun.
A week or so after Thanksgiving Owen came down with a fungal infection and he was readmitted into the hospital. So here we go again ,just the two of us running back and forth.Then it was time for Jay to go back to Ohio so we could keep our benefits. Once again I would REALLY be on my own with all three of them and possibly Owen would still be in the hospital. The doctors would ask if Jay had any relatives that could help us out , and stay with us since they saw my family there quite frequently. Jay called and asked if anyone could come stay awhile but they said it was pretty far for them since they were in Florida and we were in Minnesota ! Very loving they are. Thankfully , by God's will Owen was released from the hospital the morning Jay was to leave for home. It was this night that I felt God pick me up by both arms and started caring me. I felt such a peace come over me. I didn't feel that worry some feeling anymore because I was gonna be left alone to take care of my three children .God was with me the whole time , now more than ever !!!
Draw near to God and He will draw near to you. James 4:8




Adrenoleukodystrophy is most commonly inherited as an X-linked condition. This means the abnormal gene is found on the X chromosome. Because women have two X chromosomes, they have a spare normal gene as well as the abnormal one, so they generally only carry Adrenoleukodystrophy. But men have only the one faulty X, so they are affected by the condition. X-linked Adrenoleukodystrophy may occur in three forms, with onset of symptoms in either childhood or in adulthood.



As most of you know my parents had six girls. We knew nothing about Adrenoleukodystrophy , never even heard of it. Until my nephew Billy began having seizures ,my sister noticed he was experiencing hearing and vision problems.Frantic , she went to the doctors and they could not find any problems , vision seemed fine , hearing was normal , and the seizures were possibly

epilepsy.Not content with the doctors she took Billy to the Cleveland Clinic , here the specialist ran many test , but were still somewhat baffled with what was going on. Soon , soon my sister , parents and Billy were on their way to Johns Hopkins Hospital in Maryland. Here is where we found out the most horrific news and the word Adrenoleukodystrophy.



The doctors really didn't know much about the disease at the time and are still learning more about it every day. They said that females are the carriers and that there is a 50/50 chance of passing it down to their children. They also said that it is most likely fatal if passed to your son's.After much genetic testing we were told that Adrenoleukodystrophy came from my mothers side of the family.Soon my older sisters and I were tested to see if we too were carriers , which at the time the test were not all that accurate. The results showed that we had a 80% chance of NOT being a carrier.



Fast Forwarding



Remember when I said God had other plans , when I found out that I was pregnant with Owen ?

Well when we went to Minnesota the first time for our consultation to see if the boys would be candidates for transplant , they did a number of test on each of the boys.It was Owens blood work that the doctors were able to accurately with 100% identify the gene in our family. So , what this means is the genetic tests my sisters and I had done years before can now be done with 100% accuracy letting us know 100% if we are carries or not. Obviously we know Loretta and I are , but the wonderful news is my others sisters are not. Thank God.







Jesus



When you go through something this traumatic you often find yourself questioning God ...why?

Why us , why did we have to lose two of our nephews , why just Loretta and I , why our kids , and we'll never know WHY , but I do feel that it has stopped here. For along time I was upset with God , but deep down I knew their was a reason for all of this. He has a plan and Never leaves you.

So , going back to the night when Jay was to leave Minn. and go back to work in Parma and I was so scared because I was going to be left alone with ALL THREE boys while he was gone. It was that night that I woke up in the middle of the night and this peace came over me. I felt like I was picked up by both arms and held and I just knew everything was going to be OK , no matter what direction we were headed.



In January of 2007 just after Dylan's 12 birthday we found out the boys were healthy enough to go back home to Ohio. This was wonderful news as we had spent six months in Minnesota. My parents and sisters and brother in laws all chipped in the get the house ready for us. My mom and sisters cleaned everything thoroughly , my mom had the air ducts cleaned and bought the boys all new mattress's and air purifiers. Dust is a Big threat to the immune system , as it carries mold spores bacteria and tons of germs which can be life threatening to a post transplant patient.



We will be forever grateful to the mothers who donated their cord blood that made it possible for Owen to have a transplant. We often wonder who these people are and we would love to thank them .

But cord blood is donated anonymously and we will never know exactly who they are just that they were both from female babies umbilical cords. Now Dylan's donor on the other hand is a living donor who is a perfect match for all three of my son's. I'll never forget the day we were told that they found the Perfect match for Dylan. It was just days before Owen was to be ad mitten for his transplant . The doctors said they needed to talk to us and that they had some great news.

They had found a non related living donor that was a 100% match for all three of my boys ! This is AMAZING. We were given the option to wait on Owens transplant until they contacted this donor , but we didn't know how long that would take and time is something we didn't have , so we stuck with the 4/6 unrelated double cord blood .



On Oct 4. 2006 Dylan received his new wonderful gift of life. We often wondered about this donor.

All we knew was that he was 26 years old very athletic and in excellent health. We were asked if we would like to be contacted with the donor and of course we said yes ! We filled out the necessary paper work and waited . Last year just before Dylan's fourteenth birthday we received a letter with the donors contact information. As I was reading the information I saw his name and my jaw hit the floor and tears began to flow. His name is Jesus!!

Now ,I know that is not how it is pronounced , but it just gives me confirmation that EVERYTHING with be OK. I think how amazing that this man who is not related , not of the same race is a 100%

Match for ALL THREE of my boys and his name is Jesus.

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Awareness store ALD. Adrenoleukodystrophy, Alexander Disease Awareness, Krabbe, MLD, AMN, Leukodystrophies 10% of sales go to Little Warriors

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