Thursday, July 22, 2010

Leukemia Joys :)

Leukemia is one of those illnesses that is so unpredictable. Leukemics have to take a day at a time and can't do a lot of predicting of the future. Prognosis, procedures, treatment plans, and everything else that comes with the territory can change at the drop of a hat; so, whenever anyone asks about any of those things I am left wanting for words. All I know is what the plan is for now, and every plan is subject to change.
I did have my lumbar puncture on July 13. Everything went fine and leukemia is still absent from my spinal fluid. My back has been pretty tender since then, but who knows why. Most of you know my back (SI joint, hips, sacrum) has been messed up for some time. Could be all of that resurfacing. I am glad Dr. Garvert (my chiropractor) is still around. I knew that he has been missing me! One visit down and many more to come.
I have had 2 clinic visits since the 13th - the last visit was yesterday, July 21. My counts are still just hanging out. Once I figure out how to edit the sidebar on this blog I will post the norms for each lab test we watch; for now, I will just put it in the post.

*My hematocrit (Hct) was 26.1, up from 26. My body is still low on blood: A normal Hct is 36.0-46.0.
*My platelets (PLTS) were 97, up from 91. A step in the right direction, but short of the normal PLTS of 150-400.
*My white-blood-cell (WBC) count was 2.7, up from 2.4. Another step in the right direction, but short of the normal WBC of 3.6-10.6. I am almost normal!
* My absolute neutrophil (Neut, Abs) count was 1.4, down from 1.8. My doctors always tell me to not worry about the count going down a bit. The normal count is 1.8-6.8.

I have a bunch of other labs done, but I don't really know what they are or what they mean. My mom relies on my sister-in-law Charise to explain the other counts. I don't remember what I've been told about them. :)

All in all, I look pretty good on paper (that's what my docs say). However, my engraftment of donor cells has been lost a bit (that's what my coordinator says). Hence the tacro taper (explained in last post) that my mom and I messed up. So, we're behind schedule by about 4 days. The hope is that going off my immunosuppressant will kick the donor cells into action. I will get to have another bone-marrow biopsy and peripheral chimerism test two weeks after I finish my tacro. Those labs take 10-14 days to come back, at which point my team of docs, plus a few others, will decide if I need a donor-lymphocyte infusion (DLI). If I need a DLI, I will have one dose of some drug, a day of rest, and then the infusion. So, there is everything I know for now. Remember, everything is subject to change.
I did make it to a movie with mom, Kim, and Kaden. We went to the big iMax theater in Salt Lake and saw Toy Story 3D. I took my big frog blanket to cover the seat and arm rests and went at a time when the theater was essentially empty. It worked out very well. It was also so nice to have Kim with us again. What a fabulous big sister!
I about died when I saw this picture. Wouldn't you be scared if you saw me coming toward you? It really just cracks me up. No wonder I got some strange looks from some kids (and probably adults too).
I told you about my grandpa's wedding a couple of weeks ago. I did get some pics that Cami took.

Here is the happy couple.

I am actually in this picture. Look at that bald looking, masked person in the back. Not Eric - he is bald. Look way back.

My dear Kaden. He is 13, what more do I need to say.

We had a great party with my dad's side of the family. We went to aunt Lenie and uncle Kohn's house. (Arlene, is that how you spell Lenie? I just don't remember.) We get together once or twice a year and have a fabulous time! My grandma Hill is so loving to all. She's my Norwegian grandma who has the biggest heart, the most wonderful smile, heartiest laugh, and best attitude. I absolutely adore her! Another extended family who I love, with only a few missing!

FYI Family: I stole this pic from uncle Ron's Facebook page. I know that he loves me so I am thinking it's okay.

One of the most exciting recent events was the return of Kaden's uncle Andrew from Afghanistan. Kaden has missed seeing him at his games and having him around as a camping buddy. We were fortunate enough to see him fly himself in to the Logan Airport. Kaden was very, very excited!

Kaden got ready for the day without any hassle from me. I love his hair and wish someone could convince him that he is so handsome without that darn hat of his. I like him with his at too, but just look at that curly hair! (sorry, I digress)

Andrew just landed and parked the plane. His family had a beautiful "welcome home" poster for him and lots of hugs and loves. It was nice to see him, his wife Elisha, and son Johnathan reunite.

Kaden can rest easy knowing that Andrew is on American soil. Hopefully Andrew won't have to go back on tour too soon. We are all so grateful for his service in the army! He is a wonderful example to Kaden and is completely loved by Kaden. I am so glad he is a part of Kaden's life! What a great example of love and support in a difficult situation!

Cami will post about the fabulous Hyde Park parade later. She has all the pics.

Much love - Melanie


Kimbies said...

Great post Mel! Hope you are feeling good today. Love you! Miss you! :)

Cami said...

Great post Mel. I love those pics of Kaden and Andrew.That pic of the Hill family is awesome! I guess I need to check out Ron's facebook page. :)