Sunday, July 29, 2012

Heidi's Piano Recital

I found this video of Heidi at her last piano recital in May.  She did a great job with her piece.  She complains a lot about practicing but she loves when she can play for us.

Good-bye Van

So a couple of months ago our van started having problems with the brakes, again.  The van is 11 years old . We bought it new and planned on driving it for twenty years.  However we have had brake problems from the very beginning.  Also it gets like 10 miles to the gallon.  That is not so great for all the running around I do with one kid.  So after several months we finally did it.  We traded in the van for a Ford Fusion.  It is nice to have something with brakes that work, that is easy to park and turns better.  But I miss that van.  Good-bye big green van.  We will miss you.

Friday, July 27, 2012

Mia started her second round of chemotherapy on Wednesday.  We spent 8 hours at the clinic while she got all of her medicines.  On Thursday we went back for another dose of her etoposide which only took 3 hours.  We are back today for the final dose of etoposide and she will be receiving IV IG which is antibodies.  Just now we discovered that her feeding tube is completely blocked, which means that she will get a new tube put down today.  Mia has gained four pounds in the last week so she is now up to 83 pounds.  She has been feeling a lot better lately.

Monday, July 23, 2012

Getting the mail!

Mia likes to get the mail and having an IV pole doesn't stop her!

Sunday, July 22, 2012

Well I thought that with all that is going on I should resurrect this blog. Hopefully it will make it easier to keep  everyone updated on Mia's progress.  So here is a little background on what is going on.

Last fall Mia had her tonsils out.  At that time her antibodies were all wacky.  A couple of months later they were checked again and were still off.  We moved from the ENT doctor to an immunologist.  She did some more background and more tests. After a couple of sets of tests she sent us to the Hematology/Oncology clinic.  Casey took her to her first appointment because I was on my way to Women's conference in Provo.  He called that night to say they wanted to do a bone marrow biopsy the next day and so early the next morning I drove back to Boise to be home in time.  The doctors did not find cancer or leukemia.  The next week she went in again to have a lymph node biopsy done.  During this time it was discovered that her distended belly was in fact a very enlarged spleen.  After nearly two months of tests, Stanford finally came back with an answer.  Mia was diagnosed with a rare lymphoma.  Angio immunoblastic T-cell lymphoma.

This lymphoma is generally found in men over the age of 60.  It is essentially unheard of in children.  Her doctors are following the same chemotherapy protocol used for adults, tailored to her age and size.  The plan is for her to receive 6 treatments of CHOP plus etopiside at 15 day intervals.  CHOP stands for the four of the drugs they use.  She had one round already.  The second round has been delayed a bit as they are waiting for her white blood cell counts to improve.  In order to help her recover more quickly another medicine, a hormone, is being added to the regimen.

Mia will also receive an autologous bone marrow transplant.  This means that stem cells will be harvested from her own blood and stored to be transplanted later.  So after the third round of Chemo we will head down to Primary Childrens Hospital in Salt Lake City.  We will spend up to a week there so that the harvest can occur.  Then we will be back home.  After the final round of Chemo will head back to Primary Childrens to receive the transplant.  She will be in the hospital for 3-4 weeks until her white blood cell counts start to recover.  Afterwards, because of the possible complications, she and I will be required to stay in the area for about 2 1/2 months.

Mia has really not been feeling very well over the last couple of months.  She did all right with the first round of treatments although she did get mouth sores and super stringy saliva.  Because she has lost 20 pounds over the last couple months the doctors were concerned about her weight.  So they put an NG tube in and she gets pediasure continuously.  This helps a lot because she just doesn't eat much at all.

Today she went to Young Women's for the first time in several months.  She was so excited to be there.