Archive for September, 2010

An Update … Please Pray for Jordan and his family!

Jordan is in the ICU due to internal bleeding, it started out as bloody stools and is now clumps of blood. We don’t know where it is coming from.

They just did a CT scan and we are hoping to find out where the bleeding is coming from maybe his colon or lower intestine. It is a lot of blood.

Pray they find where it is and that they can stop it.

Keep strong Jordan!

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A Match was found!

Great News! Jordan’s brother Jonathan is a match for the bone marrow!

More to come ….

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From Jordan: My Aplastic Anemia#2

I want to take a moment to let you all know just how much I have been blessed by the amount of support I have been receiving from God, family, friends, my second family Ace Wireless (US, DR, Asia), customers and suppliers, and many people I have never met but have graciously offered support both financially and through prayers. I could not get through this without you all! I have been brought to tears of gratefulness as I hear account after account of how you are so willing to help me and my family through this tough time. The amount of prayers has strengthened my walk with the Lord and has helped my body and the doctors heal my fevers and sore throat and regain my health to prepare me to endure my upcoming treatments. This has been such a rough but encouraging time in my life and I am so thankful that I have such a great support structure behind me as I go through this…Thank you all!

I arrived at Cedar-Sinai and was walking into my “New Home” for the next couple of months, a 10×10 octagon room with an old Zenith 24inch TV, 90’s style wallpaper and drapes, and a bed in the center of the room. I looked out my room window to metro Los Angeles, an array of buildings and car parks…I thought to myself, “I can do this…breath…I can do this”. It was not the aesthetics that concerned me, it was that it all felt so foreign to me….I felt far away from home. The sun was setting and I was not sure what the night was going to look like for me in this new hospital. I was very thankful to be at such a high ranked hospital for the treatment I would need and thanked God for getting me here safely. I did not receive extensive test or treatment the first day so it was nice to just relax and take in my new environment and get my mind around the fact that I would be here a while.

The start of the first official day at Cedars begun in an early flurry, blood draws at 5am, swabs of almost every region of my body, spit culture test, urine culture test, the list goes on…I felt like I was a new species and they wanted to figure out what I was and what made me tick. Many questions were asked multiple times by 5 tiers of the hospital staff: doctor students, intern doctors, nurses, fellows, and attendees. It all got a bit repetitive and as the day progressed I realized that I did not need to go into detail with every person (specifically the doctor students and the intern doctors) as many times their faces would just glaze over because they really had no idea what they were hearing nor what to do about the information I was giving them. Doctor students and Intern doctors are more like really bad reporters (they could not repeat back something you said 5min earlier because they do not take notes nor do they know what points are important and what are not) than doctors as they take the data from the source and carry it back to the over-seeing specialist doctor and they always bring it back in piece-meal form. This is a part of the training process that a student/intern must go through so it really adds no value to the patient as the over-seeing specialist doctor will always come in and ask all of the same questions and usually get a much different read on the responses. Initially this process frustrated me immensely; however as you will see later in this recap my heart changes to look at this in a positive light.

The over-seeing doctor for my condition, Dr. Michael Lill, visited me on Sep. 8th 2010 in the later portion of the afternoon while Corie was visiting me. He was a tall, white haired, trust-worthy faced doctor from Australia. He had an even tone (slight Australian accent because of the amount of time spent practicing in the United States) and made me feel very comfortable to be in his over-seeing care. He explained what I had and said all of the blood work results pointed to Severe Aplastic Anemia and then explained what procedures he suggested that I should follow to eradicate my body of this disease. He said that my siblings would all need to be HLA type tested immediately to determine whether I had a match for the bone marrow/ stem cell transplant. He said siblings are 1 in 4 chance of being an identical match and therefore having 7 brothers and sisters I have a much higher probability than most people in my position. This is definitely one of the great blessings God bestows on large families (the Duggers are pretty much set if anyone needs stem-cell transplant!), Corie and I were so thankful to God that I had such a large family and that everyone in my family was so eager to donate their stem-cells (Thank you all so much, you are all so amazing!). The Dr. continued to explain that this process would include chemotherapy to strip my body of everything that might try to fight off the donor stem-cells. After Chemo was complete they would immediately administer the stem-cells and it would take 4-6 weeks of transition, monitoring, and seeing whether my body accepted the donor cells. There was an 80%-90% success rate that this would heal me and a 10%-20% chance that this could kill me. I was scared hearing that this procedure could kill me, but the Dr. said, “hey, it is much better than a 100% chance of dying without treatment”. The manner in which he said it actually did ease Corie and my unsettled feeling and we began to feel comfortable with the treatment that the Dr. was suggesting as our best odds of beating this disease. As we were finishing up I asked the Dr. a bit about his background and of course a favorite past time of mine “Rugby” and how I used to watch his country’s team the Australian “Wallabies” and their rival team the New Zealand “All Blacks” fight it out every year during my stay in the Cook Islands when I was younger.
As the days progressed I went through a ton more blood draws so that doctors could retest and confirm everything that the other hospital produced results on. I was receiving 1-2 blood draws of 5-7 viles at a time, all while they monitored and checked everything in my body to make sure they did not miss anything that could show them how I could have acquired this disease.

In the end they determined that the cause for my Aplastic Anemia was Idiopathic (which means they have no idea what caused it) and that regardless I would need the same treatment to heal me. On Sep. 10th 2010 I was supposed to have another Bone Marrow Biopsy done and I was not looking forward to this as I had such a horrible experience with the doctor at the other hospital; it was the worst pain I had ever felt. The pathologist who came in to administer the bone marrow biopsy assured me this biopsy would be much better than what I described to them what happened to me prior and said that I would receive the right medication to ease the pain and anxiety of having a needle stab into my hip bone and extract bone marrow and a piece of the bone. I was not looking forward to this and was looking for any way to see if they could get the results without the bone marrow biopsy. Unfortunately, the doctors had to have this to confirm the data regarding my status and whether there was any hope that my bones were producing amateur white, red, and platelet cells that could be in the pipe but were not producing yet.

I was getting very emotional about proceeding with this biopsy as I knew the pain would be almost unbearable and that I was really afraid about the results turning out to be the same as the last time and thus confirming once again that I had Aplastic Anemia. Corie was with me and helped me get through the emotions and I consented for them to move forward with the procedure. It was getting close to the end of the shift and the doctors wanted to get this rolling so they quickly got me setup on the bed in my room, the charge nurse administered the “calming” medications (which definitely calmed my nerves down but not my mouth…my mouth continued to want to talk…you can ask Corie what I said), the pathologist numbed the area and then began the bone marrow aspiration process. All said in done the process only took about 3minutes and was a 2 in pain compared to the 10 in pain from the last doctor that performed this procedure on me (like I said I will get that doctor back…). All that agony for 3 minutes of basically a minor pain when the doctor pulled the bone marrow out, I was so thankful that God blessed me with doctors who care about people and that they did not take joy and causing pain.
This whole first week at Cedars was really beginning to get overwhelming for me, my fuse was beginning to get short, and every little thing that the medical staff did wrong or did things without notifying me was driving me crazy. I was tired of being woken up at all hours of the night for random or even routine tests. I hated being hooked up to IVs which made it difficult to get up and move around or even to just go to bathroom was a task. It was all just starting to get at me. I was at the end of my first week at Cedars and I had had it, there was a new Intern doctor over seeing me that did not know what he was doing and the nurse that I had just kept on dropping the ball with me. I said to myself, “I have to take my care into my own hands, these people do not know how to communicate, nor are they competent in performing their jobs!!”….So when my IV which was supposed to be finished in 30min took 3 hours because the nurse had stopped it without notifying me and the Intern doctor was stumbling over himself I began to yell. I told them that they are dealing with a life and if they mess-up on the small things how do they expect to do the big things right?? I said, “I cannot tell you people how to do your jobs…but you are making me have to tell you what to do…if your out-dated computer system says a lab is “Pending” it means you call or go down to the lab to ask what is the status, because the lab techs are notorious for NOT updated the system…DO YOUR JOB!!!!” I was furious, I could no longer do this…I was exhausted, pint up anger, scared of losing my life, and was not going to be a project manager for the hospital for free!! Finally a senior doctor arrived on the scene who was over seeing my case with Dr. Lill, her name is Dr. Lopez, and she had the nurse and intern leave the room immediately and she sat down with me. She looked at me very sternly and said Jordan you need to save our energy for the future treatments of my condition. Dr. Lopez said that it does not do me any good exhausting myself on the little things and taking all my energy to fight the staff and try to self manage my condition. She said, I need to tell you this so you know what is coming in my future, the treatment for Aplastic Anemia is not an easy treatment and that if I am not prepared I could die because my body and mind will not be able to handle to severe conditions that my body was going to go through. She said that after Chemo I would lose all of my hair, my body would be depleted of all the cells that keep my body healthy and I would be highly susceptible to severe sicknesses that could kill me, when they implant the stem cell the transition period was going to be hell on earth for 2 weeks (throwing-up, diarrhea, headaches, sore throat, coughing, body and bone aches). She said sometime I may throw-up or diarrhea in my bed and the nurses may not be able to come and clean me up right away and that I would have to wait, and she said I would need to build up my patience to get through these difficult moments. So in other words I needed to relax and save up my energy for what was coming my way and that my mental and physical strength needed to be with me to get through this. I broke down in tears…it was hard to hear…I was so used to being in control of my life and now I was having to have others take care of me at their own pace and let go of my pride. I knew it was going to be hard and I could not do it alone. I began to pray and said God you need to take control of my life…I have been trying to control everything and I cannot do it alone…no I cannot control anything! I am hopeless without you and I need you to take control and lead me through this and give me the patience and the strength to get through this…please Lord… I need you.

Over the next few days I continued to pray and let God take control and He gave me an inner peace and my mindset began to change seemingly overnight. The little things that normally would have set me off (administrating my medication at 12am when I am sound asleep instead of 9pm when they were originally scheduled…) were not making me upset, I just thought to myself you know what I am thankful for the fact that she remembered and that I have my health currently. On Monday the 13th Dr.Lopez came and saw me and asked how I was doing and I explained that I was doing great and that I was thankful for the health I have currently and that I was no longer allowing the little things to frustrate me because in the greater scheme of things they were minor in comparison to what I had coming to me (Chemo, radiation, Stem cell transfusion etc..). I had given it up to my Lord and Savior and I was going to let Him take care of me as He has always done in my life.

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Updates for 9-14

Jordan’s siblings are now getting their blood tested for marrow compatibility, unfortunately, it will take two weeks to get the results back. Keep positive!

Jordan has also been given red blood cell transfusions to help his symptoms while they await the test results.

Keep the Sielaffs in your thoughts and prayers!

Please help by donating today or you can donate airline miles.

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From Jordan: My aplastic anemia

Jordan wrote a bit about his condition.

Here it is , in full, unedited:

I am 27 years old and have never had a serious condition in my entire life, until now… I was diagnosed with severe aplastic anemia. This is a quick look into my experiences and how God has taken hold of my life and the lives of everyone around me and is showing us His mighty power and desire for an intimate relationship with each of us that goes deeper than any earthly relationship can.

It was 9:00pm on Aug. 29th 2010 and my wife Corie was taking me to Kaiser Permanente Lakeview ER. I was a bit frustrated about going to the ER (but at the same time thankful for my wife’s concern) because I felt like it was just severe Strep-Throat and I would be ok in a couple of days. The ER nurses seemed not too concerned about my condition they smiled and said “Is this the guy with the sore throat?” The staff’s lack of concern made me frustrated because I was in major pain and I was spitting up blood!…Yet, it reaffirmed my underlying thought that I was “OK” and that it was just a severe case of strep-throat. I sat in my waiting room with Corie my love waiting for the doctor to see me for about 15-20min. When the doctor walked in and began asking me questions my throat was overwhelming with pain and I requested that the Doctor speak with Corie as it was killing my throat to speak. I spit into a cup to show the Doctor that I was bleeding and after seeing that they quickly had me transferred into a room where I could not affect any of the other patients in the ER. They had Corie and I gown up and put on face mask to prevent spreading germs. They had no idea what I had…

Kaiser ER doctors and nurses quickly plugged me with 2 IVs in each of my arms and began pumping me full of liquids, antibiotic medication, and pulled my blood to see what was going on. The doctors came back after reviewing my blood and said sir your white blood and platelet counts are very low we cannot let you leave the hospital until we figure out what is going on. I asked, “how low?”, “what does this mean?”, “What if I just get up and leave, what are you going to do about it?” I was utterly shocked when the ER doctors sternly (almost in a rebuking tone) told me that I could not go home because my white blood count was below 1 (should be 4.2 – 9.0) and my platelet count was 10 (should be 163 – 450) and that if I went home I would either bleed to death or get an infection that could kill me. The doctors said they were going to perform more test and that I would need a platelet transfusion immediately. I could not believe what the doctors were saying because I thought to myself, “This could not be happening to me…I have always been healthy…I am strong…I eat healthy…I workout when I can…and I am too busy for this disease!!!!!” I continued to think that this would pass and everything would check out ok and I would be home and back on my feet in no time. The doctors sent me in for CT scan and a variety of other test to figure out what was preventing my body from producing good blood cells. As the evening progressed into the early morning the doctors told my wife and I that we would need to be transferred to another hospital because my insurance did not want to cover my stay at Kaiser Permanente as this hospital was not on the insurance coverage list. Frustrated, tired, and sore I consented to the transfer and they began to process my transfer.

I was transferred early in the morning on Monday Aug. 30th 2010 to Western Medical Center in Santa Ana where I underwent a thousand blood test again (many duplicating Kaiser’s) as well as a bone marrow biopsy (worst pain of my life to date…I will get that Doctor back one of these days) for 5 days to determine what I had. The Infectious disease Doctor thought I had Dengue Fever…he was wrong….the Hematologist thought I could have Leukemia, acute myeloid leukemia, aplastic anemia, or it was just temporary condition… I prayed it was just temporary…Unfortunately, on September the 3rd 2010, after anxiously waiting for the bone marrow biopsy to come back with results, I was told I “almost certainly” had Severe Aplastic Anemia….I was devastated, confused, scared, and still in disbelief. I knew nothing about “Aplastic Anemia”….The Doctor said that my bones were no longer producing white and red blood cells and platelets in my bone marrow. This meant that if I was not treated I would die… Corie and I began to weep uncontrollably and everything began to sit-in on what we could/would be up against…God began to pull Corie and I into Him.

Side note: Everyone who found out about my condition began to pray, offer support (baby care, monetary, airplane tickets to fly out my family, hotel stay for my family, IPAD to keep me from going stir crazy, the list goes on and on), and even offer their bone marrow to save my life. My family put together their own “medical research team” to find out everything they could about Aplastic Anemia so that we could be informed on what we were heading into. Our close friends (Sean and Amber) put together a website Help4jordan.org to provide updates and give people the opportunity send their support. I was full of emotion to find out how many people really cared about me, and could not help but sob with thankfulness.

The Doctors could not definitively say I had “Aplastic Anemia” because they said they were not a specialized hospital in understanding this disease. This uncertainty caused Corie and I to have so much anxiety it began to become overwhelming, we felt like we were going to get ulcers. The Doctor that was treating me said he was going to have to transfer me to a hospital that specialized in the treatment of this condition so they could further test for the reason that caused this disease and effectively treat/cure it. It was between USC, UCI, UCLA, and Cedar-Sinai. The doctor suggested Cedar-Sinai as the best suited hospital to treat this condition and he quickly requested a transfer for the same day…but because it was labor day weekend the Insurance company (Bluecross) was off for vacation so they did not submit the approval until after the weekend ( got to love our insurance system!).

The Blessing of not having me transferred over the weekend, and I am so thankful to God for it (it comes in three parts), is that Western Medical Center in Santa Ana #1. My house was only 17minutes away which made it easy for Corie to come and go to take care of herself, our daughter, and spend every night and morning with me; #2. It gave us downtime together to accept the condition I was in and allow God to take control; #3. This hospital had a family room where I could hold and kiss my daughter who I had not seen for almost a week – it gave me an opportunity to see Gabrielle 3 times! (Cedar-Sinai does not allow children under 12yrs on the cancer treatment floor so I will not be able to see my daughter face-to-face for another 30-45days or depending on duration of treatment it could be longer).

On Sept 6th 2010 I was officially being transferred to Cedar-Sinai. Corie, my mother Pamela, and Gabrielle came to send me off from Western Medical to Cedar-Sinai. I kissed Gabrielle up as I was not sure when I would be able to do it again. The Paramedics showed up and they said I had to go…reality began to hit me again and I began to swell up with emotion and cry. I asked the paramedics if Gabrielle could sit on my lap while they wheeled me out on the wheel-chair and they said yes. Gabrielle cozied herself up on my lap and thoroughly enjoyed this new experience with her father riding on a wheel-chair through the hospital and out to the parking lot. I had not been outside for 9 days so when I felt the cool breeze and the sun hit my skin I thanked God for the opportunity to breathe real air and feel the sun’s warm embrace. Being indoors for 9 days with the inability to go outside really makes you appreciate just how much of a blessing and honor it is to go outside and experience God’s creation. I felt good to be outside, but I was feeling anxiety about leaving my beautiful Cor and Gabbie.

The paramedics asked me to get in the ambulance and I had to say my goodbyes. I hugged and kissed (through my face mask) my Corie, Gabbie, and mom and they said rests assure that they would be up to Cedars tomorrow to see me, this helped calm my anxiety. It was the hardest thing in the world pulling away in the ambulance and seeing them wave goodbye and blow kisses I could not help but tear-up and thank the Lord for blessing me with such an amazing family. The drive to Cedars took 2 hours because of rush hour traffic and I got to see what it looks like to drive from Orange county to Los Angeles looking out the back window (really weird when the car stops and you feel like you are still moving because there are cars coming at you). I arrived at Cedars at 6:00pm and the paramedics wondered me around the hospital trying to find where I needed to be dropped off (it was a little amusing, but mostly frustrating, because come on they should know right?).

I am now at Cedars Sinai and my journey to recovery both physically and spiritually is continuing daily. I will update more when I have time and strength, love you all and thank you for your love and support!

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Update for 9-9

Today Jordan’s diagnosis was confirmed by the staff at Cedar / Sinai, he does have Aplastic Anemia. He has more tests and another bone marrow biopsy scheduled. Now that the blood disorder was diagnosed, the treatment process can begin. Jordan’s siblings are all being tested for bone marrow compatibility. Once a match has been found they can proceed towards the bone marrow transplant. He will remain in the hospital, and the Sielaff family will continue to need your prayers and good thoughts.

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Jordan is at Cedar / Sinai in LA

Jordan was admitted yesterday to the facilities at Cedar / Sinai. No new updates.

Please keep Jordan, Corie, Gabbie and the whole family in your thoughts and prayers. Please see our previous posts on how you can help with donations and transfers of your extra airline miles.

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Update on Jordan

Jordan has been in the hospital for about 8 days now. He was first sent in with Strep Throat, but during their testing they discovered something much more serious.

He was diagnosed with Aplastic Anemia . He is going to be transferred from Western Medical Center in Irvine to Cedar Sinai in LA where he can see a specialist and get a more thorough analysis to be certain of his condition and begin the treatment process. Right now there are a lot of unanswered questions and we will keep everyone updated here and on the site http://help4jordan.org

His family needs your prayers and good thoughts. They also need airline miles to fly family out or monetary donations to help with the travel costs.

Keep strong Jordan!

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Donate Your Airline Miles!

You can donate your airline miles by creating an account at http://www.points.com ! Our points id is ‘ Donate@help4jordan ‘

You can also check how much of the conversion will cost between point systems using : http://www.webflyer.com/programs/mileage_converter/

Thank you!

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