Taylor Tenhoff's Journal
Written 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!
Written Feb 11, 2014 8:26pm
Happy 3rd Anniversary Taylor! Today is the 3rd Anniversary of his last transplant. (1st transplant was 5-5-08) He goes down to the University of MN Children's Amplatz for his anniversary blood work and check ups on Friday. No bone marrow biopsy this year, unless there would be a red flag with his blood work. Then, to celebrate, we will be going to the Toby Mac Concert! Fun Fun Fun. Things are pretty good, except Taylor has had some crazy blood sugar levels. No rhyme or reason for it. some days, it is 130's and has been as high as 213. One day, after school, he came home, said he was shaky, and it was only 87. Since he does NOT take insulin, that low did not make sense. So, hoping there isn't something else going wrong. When he was having gallbladder problems, his blood sugar was high too.
I will update when we get all his blood work results back. He will be seeing a different doctor, who is in the long term care clinic. It will be weird not seeing his doctor of 6 years! But we were told that his "old team" and doctor will pop in on him. They are like old friends now. Thanks for checking in on him and keeping him in prayer.
We are raising money for the Tim Orth foundation. It is an organization that helps out families of kids with cancer or life threatening issues. If you want to buy a raffle ticket (s) they are $1.00 each. Send me an email or call. Someone nominated Taylor to be a recipient this year, because we still have some medical bills. Thanks.
Written Nov 2, 2013 3:56pmHi
After a couple weeks of taking things out of Taylor's diet, we think we have it pinned down to one of his medicines. First, we thought it was sunflower seeds, then the hot sauce that he puts on everything (since his transplant, he craves super, spicy stuff) then we thought it was a different brand of product we were using, etc etc, but found that when he didn't take two of his medicines together, he didn't get hives, and so we cut off the one, and he hasn't had hives in 2 weeks. I thought about testing it out again, but don't want to see the hives again! He is due for another check up and blood work again in a few weeks, so we will see where he is at. Keep praying,