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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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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 ‘ [email protected]

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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