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

Bloodwork results, 4th year anniversary

HI  We got results back from last weeks blood work!  Everything looking good!  Hemoglobin 15.2, platelets 160,000's, white count 7.0,   this is the biggie for me-  His ferritin level:  462 is what I think his NP said!    Ferritin is the level they measure iron stores in the liver and blood.  Since Taylor had 34  red blood transfusions, and 52 platelet transfusions,  the iron in people's blood stores up in the liver.  Iron is metal, and it takes years and years to flush this out.  This is one of the reasons Taylor had  to have his gallbladder out, it was from all the transfusions and chemo.   Well, his ferritin level used to be 1106 at his one year check, and they wanted to do phlebotomy on him, which is bleeding out.  Basically, they take blood out of you, like a blood donation, but can't use the blood.  That takes good cells out too, so we didn't want to go that route, but, against his doctor's advise, we started Taylor on  milk thistle, an herbal supplement that cleans the liver.  The first year, ferritin went down to 900 range, (out of range to do phlebotomy), next year it was 700's, and now in the 400's!  This is amazing!!!! Please rejoice with us in this milestone!!!  AND pray for friend, Jamison, Taylor's age, who went through BMT  a week after Taylor, with same condition, Aplastic Anemia, who most likely will need phlebotomy, his levels are still about 1000.  This is the sad part of post transplant for us.  Watching other kids continue to need treatments, and struggle with other issues.  And Taylor still struggles with many things, in spite of the great progress and improvements.  

Here is another tid bit, that I feel is very significant:  The MMR vaccine issue, that plagues us.  As you may recall, Taylor's vaccinations were wiped out with the first transplant.   His higher dose chemo/regimen was equal to a year's worth in one week, and destroyed not only all his bone marrow, but  immunizations as well.  After his 2 year mark, he was to get his live vaccines over again:  MMR and chicken pox.  Within a month after, his bone marrow failed, and he needed another transplant.  In light of this, after his 2nd Bone Marrow Transplant, we opted out of the live vaccines, and get badgered every time we go to check ups.  This year, his long term care Nurse Practitioner really was pushing, especially with all the measles going around.  So we had her do an anti body blood test to find out if he had any immunities to Measles.  A level of 1+ means you have immunity, and you would not need a vaccine.  His level was 1.2 !!!!  Which is almost impossible to have, since his immunizations were supposed to be wiped out.  I am so glad they checked it, cause now we can be rest assured that he is immune to measles.  How this is possible is beyond me, but it also raises questions to if he needed that shot after his 1st transplant.  Lots of unanswered questions that are bringing up past frustrations.  Which may explain why I am super crabby today.   This stirs up many sources of anger for me and Russ, which we should try to get over, but almost cost Taylor his life, and put Katie at risk as well.  Just when you think you are healing, more stuff pops up.   This anniversary brings a lot of emotion, good and bad.  Overall, praising God in this storm and lifting our hands that God is who he is, no matter where we are. Every tear we cry, He holds in his hands. (~Casting Crowns, "Praise you in this Storm" song.)   Thanks for being there for us, we love you all and appreciate all thoughts and prayers,

Monica, Russ, Taylor and family

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Comments

6 Comments

Paul Peterson
By Sara Peterson
So happy to hear all the good news!! What a relief to find that Taylor has immunity. Can't imagine how stressful that would be to give him that shot again. Hoping all continues to go well. Paul will be having his 1 yr check in a couple weeks...anxiously awaiting it.
Carol Bistodeau
By Carol Bistodeau
Thanks for sharing the wonderful news. There are many amazing adventures ahead for the amazing Taylor!

Your friends at Wishes & More
Pat Miller
By Eddie's Grandma Pat
So happy for the good update. There is nothing you can do to change what happened and there is no point in carrying the burden yourself. Put those angers at the foot of the cross and give them to Jesus.
As always, I am keeping Taylor and all of you in my prayers.
Lois Schlauderaff
By Lois Schlauderaff
Really great news... happy for Taylor and all of you. Blessings.
Dale Ryynanen
By
Great news. Love to read it! Bennett and I met Russ at the Twins home opener last spring! It was nice to meet a Tenhoff in person. Been praying for Taylor for many years. Thanks for the update.

Dale for the Ryynanens
Lori Dahlman
By Lori Dahlman
So wonderful to hear some good news. Praise God for His mercy and grace to you!