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Taylor’s Story

Welcome to our CaringBridge site. Taylor was diagnosed with Severe Aplastic Anemia in March 2008. He received a BMT in May, 2008. Explanation of a BMT on resource tab.  In Nov. 2010, Taylor's BMT had failed.  After several unsuccessful other treatments, He had a 2nd BMT 2-11-11. This journey is not over yet. WE encourage you to become a blood donor (with Memorial Blood Centers or Red Cross) and Bone Marrow Donor @ bethematch.org

 



Taylor is an energetic 14 year old boy. He loves to draw and create cartoons. Also is a HUGE Star Wars Fan. Taylor has been diagnosed with Aplastic Anemia. This is a very serious and life threatening illness. We initially took him in to be checked, because of the frequent and easy bruising, which was because of low blood platelets (his are19,000, they should be 150,000). He had also been having headaches, due to low red blood cells, (his hemoglobin has been between 6.8-7.6, normal is 12-16) which does not give enough oxygen to brain. His energy level has gone very low. Because of his blood counts being so low, especially the platelets/clotting factor, there is a risk of internal bleeding, or severe bleeding if he is injured. Also a decreased immune system. This is catogorized as an auto-immune disease. The cause of Aplastic Anemia is not known, but it effects the immune system, which causes it to attack his bone marrow. Bone Marrow is what produces blood cells. So his blood is not producing new cells, or the immune system is attacking the cells faster than they can produce. He will begin chemotherapy, which will wipe out all of the current bone marrow which is not working to make new cells. This will be followed by a bone marrow transplant. This is considered a very serious treatment. This is the most aggressive form of treatment, and used only for certain cancers, and if only because you would die otherwise. The date for treatment to begin has been set for April 28. Watch for updates. His sister Katie, who is 16, is a perfect match, and will be the donor. It will be drawn from her hip, while she is put under. I had previously understood that it would not hurt much, so this is a correction. It didn't hurt Taylor, because his bone marrow is unhealthy. However, it will hurt for Katie, that is why she will be put under. Taylor will also be taking a medicine to prevent infection, which can be very hard on the liver. Please pray he tolerates this well, with no ill effects. Note that no cancer has been found. There are many possible side effects of transplant, but he is in good health otherwise, is young, and has a full match/sibling donor, putting much in his favor. We have faith that God will bring him (and our family) through this all. The expected recovery time is one year. This is a very high risk treatment, and death is a possiblility. Please keep him and all of our family in your prayers.  He has 6 siblings: Stephanie 27, who is on her own and engaged to Duane, Heidi 26, married to Trevor, Becky 24, married to Caleb and they have 2 sons, Gabriel (Gabe) age 5 and Claytonage 1, born on Taylor's birthday, Roxie 21,  Katie 19, married to Jon, and Tucker 17, living at home.
WE MOVED BACK HOME on July 11, 2008 after a successful Bone Marrow Transplant on May 5, 2008. Only a few minor complications, this transplant was considered "picture perfect" by his doctor. He had a bone marrow biopsy on August 8, 2008, and his bone marrow is 100% engrafted with the donor's(Katie's) cells. This is great news. We still will watch for graft vs. host disease, and praying that engraftment does not fail, since these are new cells that need to take root. I will post new prayer concerns or needs in journal section.  You can request our home and cell phone numbers, by email: tenhoff_clan@yahoo.com.  Taylor belongs to ministry organization called Hopekids. You can visit their website at www.hopekids.org and request their "hope minutes" daily devotion type messages or give a contribution. Thanks again for being a blessing to our family! May God bless you richly!
October, 2010- We have found out that Taylor's transplant has failed.  First plan of action is to get a Donor Lymphocyte Infusion from Katie's blood.  This is a blood donation of about 100 cc.  If this does not work, then another Bone Marrow Transplant may be in order.  This is very disappointing.

WE MOVED BACK HOME MAY 22, 2011 AFTER 6 MONTHS ON U OF M CAMPUS following a successful 2nd Bone Marrow Transplant. Continue to pray for Taylor, there are still many days of healing ahead, and pray for continued successful graft with no complications.

Russ and Monica

Latest Journal Update

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It is hard to believe that 4 years ago, we entered the U of M children's hospital, with Taylor's blood counts all at rock bottom, with not much hope and looking at a 2nd bone marrow transplant, not knowing if he would live,  but NOW  Taylor is doing great!   He saw his endocrinologist last week (diabetic and thyroid) and his A1C blood test was down to 5.2!!!!!!!!  That is a blood test that shows a picture of how his overall blood sugar levels have been over the past months.  Taylor also dropped 20 pounds this summer, with combination of several grueling cancer kids camps and church camp, diet and exercise, and a long, dragged out bronchitis/sinus infection.  Taylor's doctor, just sat and stared with all of Taylor's progress.  In his doctor notes, he said, "I am thrilled with Taylor's  progress..."   He said if everything stays where its at, Taylor may be able to go off the diabetic drug, metformin, in 6 months!   On a side note, Taylor's other doctor, his hematologist, Dr. Jakub Tolar, was on the KSTP news for some breakthrough treatment with another condition.  We have become so familiar with all these doctors, that seeing one on the news, was like seeing family.

Another update, Taylor's sister Katie, who has been his donor for his two BMT's, has been married now for 4 years, and they are expecting their first baby in March.  Another sister, Roxie, is expecting her second baby in Dec. 


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Comments

7 Comments

Rebecca Porter
By Rebecca Porter
What a wonderful update to be able to share! I am so happy for Taylor, and your entire family. How exciting to look forward to two new babies!
Paul Peterson
By Sara Peterson
Great news!! :) Think of you often.
Rebecca Warpula
By Rebecca Warpula
I am praising God with you Monica, Russ and Taylor! He continues to give Taylor life on this side :)!
Jer 29:11 A future and a Hope!
Love from Litchfield,
Rebecca Warpula
Arleen Kramer
By Arleen & Dennis Kramer
Good to hear the good news. Fun to have two babies in the family too. God Bless Your Family.
Ardy Johnson
By Ardy Johnson
Praising God, your family is doing well!
Anne Neppl
By Anne Neppl
Awesome news! Way to go Taylor!
maureen yanta
By
Hi Taylor and family, So happy to hear this news. Keep up the great work and enjoy!
Maureen Yanta and family