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: firstname.lastname@example.org. 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
Feb 20, 2014 4:51pm
We got blood results back. Hemoglobin 15.1, Platelets 173,000, White count 4.0- all good. Taylor saw a NP this time, who works closely with his other doctor. Long term care is different than previous care. She called on the phone with results, and will mail the "hard copy", so I don't know all the specific numbers on the other results, but she did say that Taylor's liver functions were elevated, so I am not sure how high. His ferritin level (iron stores in the liver) stayed about the same as a year ago, which really surprised me, since we have him taking milk thistle to clean out his liver. I thought that would drop- little disappointed. The NP said she would like us to contact Taylor's endocrinologist about his high blood sugars, and suggested he go on a medication to help lower it, not necessarily insulin, but maybe Metformin, which is a pill. His diet shouldn't be causing it to be so high.
Long term care talked about a lot of different things, than in the previous years. We also met with a social worker, who asked about mental and emotional issues, which can be an issue years down the road from a transplant. Also the risk of other cancers down the road. I don't think Taylor enjoyed this part. They gave us tons of info for any issues that may occur, which may be helpful. The Nurse Practitioner also would like Taylor to have a full neurological/psychology exam. They did that after his first transplant. They like to see where kids are after transplant, because so many have learning problems, delayed processing, etc. Chemo does a lot to a developing brain. It is like a full I.Q. test, and measures strengths, weaknesses, intelligence, and such. The first time he had it done, it was very helpful. It will be good to see where he is at. This will also be a helpful tool for school and college. Even though he has some issues going on, overall, things look well. We were able to see some familiar faces, but his Dr. wasn't there on Friday, and we missed the child-life specialist, and his hospital teacher, also. He got a bunch more beads, so we will have to add to his 75+ foot rope. He isn't so thrilled about the beads anymore, I think it is more of a "mom" thing now. This summer, we helped with vacation bible school at church and took care of missions. We chose Hopekids as the mission this year, and every night, we talked about how they minister to kids with cancer and other life threatening illnesses. We used his beads on day as an illustration, and the kids really were amazed by them. It helped the kids (and adults) to see how much these kids go through. All the blood draws, clinic visits, surgeries, chemo, hospital stays, physical therapy, etc. that they have throughout the treatment. So, we are able to use the beads for something good, I guess.
Lastly, Taylor has a mole on his back that has developed, and the NP wants it checked out by a dermatologist at the U of M. So, I suppose they will do a biopsy- they will contact us with an appointment date, but I am not too concerned with this, but worth checking out anyway. Oh, one more thing, we are participating with a fundraiser for the Tim Orth foundation. www.timorthfoundation.org It takes place in Glencoe on March 29 and it is a fun evening of entertainment for the whole family. We are selling raffle tickets, $1.00 each. Please let us know if you would like to purchase any. Contact me through my email. All proceeds go to help kids/ families with cancer/ other life threatening illness who have unpaid medical bills. Taylor was nominated to be a recipient this year.
We are thankful for all who check up on Taylor and pray for him! God has taken good care of Taylor and we pray this continues!
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