Day Plus Sixty-Two

Hi everyone... I am experiencing computer difficulties... I will let you know more soon...

Day Plus Fifty-Two

Here we are at "Plus Fifty-Two" over halfway... By the way, in case anyone was wondering. We just found out that there is nothing magical about one-hundred days. How do we know? We asked... Dr. Brunvand during one of our visits informed us that the one-hundred (Day Plus One-Hundred) is an arbitrary number selected by the
doctors way back when they started the program up in Seattle, Washington (The Bone Marrow Transplant program was  developed in Seattle, three of the founding doctors decided to break away and start a similar program in Denver). It was a number they chose as a date when
someone who was from out of town could fairly safely go home and resume appointments with his hometown doctor.
Jody continues to do well; she has her up and down days, though more are up than down. Jody and I continue to fight through the process... three clinic visits per week... twenty-five medicines to take at various times, with and without food... special trips to the hospital for nebulizer treatments, and quick
jaunts to the store for food and prescriptions. Our day is full; come 8 o'clock we are both tired, so it off to bed early. I am not going to deny it! It may be an age-issue... I know what you were thinking, so I said it. Jody's most recent visit to the clinic was exciting. We met with Dr. Brunvand, who expressed how excited he was with her progress. He was so excited he gave Jody a "High-Five" (with me we were both so excited we "whiffed"... you know, kind of half-way between lets do a
hand-shake... no high-five... no, I am over here... uh, up here!... OH! Well... let’s just laugh uncomfortably). Jody's counts have bounced around a bit, but every time we think Jody is closed to needing a transfusion her HCT bounces back. The latest CBC shows her White Blood Cells in the normal range along with Platelets and ANC. Her HGB (Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.) and HCT (Hematocrit is the proportion, by volume, of the blood that consists of red blood cells and is expressed as a percentage.) remain low; outside of the normal range. We have been told this is completely normal following a stem cell transplant. The red blood cells are the last blood cells to come back into the normal range.  We are hearing from a lot of you… asking why the blog is not being updated. I have been trying to get into a routine, but every time I get close I get side-tracked. I have now caught up on all of the insurance fillings and Jody is beginning to behave (my biggest concern is that she will let her guard
down). People have been asking for more pictures and more updates. Beginning next week I will once again be posting daily updates.
The title of our blog is Jody’s Garden, well the garden is now gone. I have changed the garden to a fall scene she can look at from the patio. Here are some pictures of our back yard.
OK... I am having an ISSUE... None of the tools are working on the blog... I will try adding the pictures again tomorrow...

Day Plus Forty-Two

No appointments today... Just being lazy... It is a beautiful day in Denver, cloudy and cool. I set up a tent in the back of the house for Jody to sit under. She likes to look at her garden. I am planning on tearing out some of the plants and planting some Mums for her. The Marigolds are still doing well along with the Petunias. I am afraid the Portulaca plants have about given up, still a few blooms but turning grey. I will try to get some pictures for everyone.

Jody is feeling a little sluggish today. Last week she had a reaction to her Magnesium IV and I think she is reacting again, just not as bad. In Jody's last CBC her HCT was down to 25.9. Normally they like to infuse her below 26, but they decided to hold off until they see her count on Friday. A low HCT count makes her feel tired, so that may be causing the "blahs".

More to follow...

Day Plus Forty-One

Hello to everyone one I am back... settling in to the routine at home. If anyone doubted it Jody is a problem child to care for, you would be wrong! Through out Jody's life she has taken care of everyone else and now she has to sit back and let me care for her. Well, that is a problem... but we are getting it down. It was almost routine until the holiday came up and the schedule of doctor visits changed.

We have received some calls and emails asking how things were going. At first I was excited because you were calling, then I started to feel I was letting everyone down by not keeping up with the daily posts on the blog. So I went to the garage and found a 100 feet of 1/2" nylon rope and tied Jody to a chair... JUST KIDDING!

Last week was so on and off... We had our normal Monday, Wednesday, Friday appointments and at each appointment we asked for the results of the bone marrow biopsy (see Day Plus Twenty-Eight... I also talk about it in Day Plus Thirty-One). Each day we asked and there were no results and I would put off writing the blog. Sorry! The bone marrow biopsy was done on Thursday, August 26 and we finally got all of the results. YES! Just like the earlier test had confirmed Jody has engrafed and over 95% of the stem cells found in her bone marrow are from her donor. That means less than 5% is her own stem cells. In addition, the biopsy confirmed that she had less than 4 percent blast cells. This is good. I wrote about her disease in one of my earlier posts, in case you forgot, here it is again.

Jody's disease (Myelofibrosis) is a high-risk MDS (Myelodysplastic syndromes (MDS) is a term that is used to describe a group of cancers of the blood and marrow). Jody had immature cells called "blast cells" that made up less than 10 percent of the cells in her marrow (per her February 11th bone marrow biopsy). In Jody's June biopsy (after taking 30 days of chemo) she showed no increase in blasts cells from the February biopsy. Normally, blast cells make up less than 5 percent of all the cells in the marrow and they can develop into normal blood cells. In Jody, the blast cells that were being made would not develop into normal red cells, white cells and platelets. This decrease in blood cell counts (red cells, white cells and platelets) leads to; anemia or low red cell count, neutropenia or low white blood cells, and thrombocytopenia or low platelet count. People with more than 20 percent blast cells in the marrow cells are considered to have acute myelogenous leukemia (AML). Jody was headed in that direction. MDS is sometimes called "smoldering leukemia," or "preleukemia." MDS is a diagnosis of cancer. The term "cancer" means that a change to a normal cell leads to the development of abnormal cells.

Jody has shown some GVHD (Graft vs Host Disease) on her body in the form of a rash. This is good because it further indicates her donor cells are beginning to take hold of her immune system. The doctors wanted to confirm the rash was GVHD so they wanted to do a biopsy. When Jody had her bone marrow biopsy done (under sedation) she also had a biopsy of the skin on her leg. The results came back confirming it was GVHD, so the doctors put her on Prednizone, which is a steroid. The Prednizone drug sedates her immune system's attack and eventually the attack will subside.

I hope everyone is as excited as we are with the news...