Chatter

The meeting with Reece's teacher was postponed until tomorrow (Cyrise wasn't feeling well this morning). Reece has been happy the past two days; he mentioned having lunch with a little boy yesterday, and told me about a little girl with curly hair who is nice. Those seem like good signs, and I pray that he continues to interact well with the other children. Thank you all for praying, too!

I had the staples removed from my head this afternoon. Also had lab tests, which showed that I didn't need a transfusion of any kind today, but will probably need platelets on Thursday when I go back. I talked to my doctor, and will see him on Thursday, when we'll discuss our updated plan of attack and I'll probably start on the Rituxan. The radiation has affected my bone marrow's ability to make cells, so we are having to delay some of the chemo for now. Dr. B is thinking I may need the stem cell transplant sooner rather than later.

I'm so tired of all of it.

I saw Mom today for the first time in a few weeks. It was so good to see her, and she was delighted to see my face, too. We had a nice visit. She looks wonderful. She said that Ron, Kelly and Josh have been taking good care of her. We're blessed to have such a wonderful family to help out.

Cyrise has made a roast beef for supper and it smells heavenly! She and Josh are both good cooks and keep me well fed. :o) My appetite is not bad, but not as good as it was. I've lost about 20 pounds since this all started, but you wouldn't call me skinny.

Later.

Sad (Updated)

I hate having nothing to write about except the cancer stuff, so blogging has been slow lately.

This week we will probably start the chemo treatments. Not looking forward to that. I don't yet know the results of the bone marrow biopsy that was done on Thursday, or the MRI that was done on Friday. Dr. B and Dr. T (neurosurgeon who placed the Ommaya reservoir) are coordinating the timing of the chemo so that Dr. T can be there the first time to show them exactly where and how to use the Ommaya. I still have the staples in my head, but they are to come out tomorrow.

All of this pales in comparison to what is really on my heart and mind today. Yesterday Reece was in here with me, and he said that he eats in the cafeteria. I said, "Do you like eating lunch in the cafeteria?" and he said that he did. I said, "Do you eat with all the other kids?" and he said, "No, I eat with myself." I said, "Oh, you don't eat with the other kids in your class?" and he said "No, they don't like me." It just broke my heart to hear him say that. I asked him why he thought they didn't like him and he said they are mean to him. Then he wouldn't talk about it any more.

This is exactly the kind of thing I was afraid would happen if he went to school. I just cannot bear knowing that anyone is being unkind to him. I hate this! I don't know what to do. I feel like someone punched me in the stomach.

Reece still seems to like going to school. He had to stay home one day last week with a fever, and he asked me if he would still go to school. I told him yes, that he was only staying home because he was sick, but he would go back again when he was well. He said that he would just stay home, but he didn't object at all the next day when he was getting ready for school. He sings little songs that he learns and tells me about playing with pattern blocks and going to the library. He still says that he likes school.

But he doesn't like to do the work required and won't try very hard. His teachers have said that he doesn't participate. He has always been slower than most kids to learn things, but he does learn them. The problem is that in school they are all expected to do the same things at the same time, and the cookie cutter approach is just not going to work for Reece.

His reactions to things are different from most kids, too. When he really likes something, he will shake his hands, do a little dance and get really excited. He likes to make loud noises, but I don't think he does that at school--at least we haven't heard from any of his teachers that he does that. Maybe those kinds of things make him seem strange to the other kids. It breaks my heart, though, because he loves other kids and he has such a sweet spirit. I don't want to see that broken, and I'm so afraid it will be (or has been).

His parents have written a note to his teacher asking for an evaluation, but there has been no response so far. Please send up a prayer for my sweet little buddy. Thanks.

*Update* Reece's teacher finally called his mommy this morning to schedule a meeting. His parents will meet with her and the counselor tomorrow morning. Thanks for your prayers! Please keep praying for him. Thank you friends and loved ones.

Another Update

Josh took me to BAMC this morning in rush hour traffic so that I could have lab tests that took about 1 minute. My doctor called later to say my platelets are "trending down," and that tomorrow after my bone marrow biopsy I will need a transfusion. White counts are also down. We think it's due to the radiation, and may take awhile for things to start upwards again.

Meanwhile, I saw the doctor on Monday. My low blood counts and having to wait for the surgical site (Ommaya reservoir) to heal have delayed the treatment plan a bit. That is worrisome because of the aggressiveness of the mantle cell lymphoma. Dr. B believes that we can go ahead and start the Rituxan as early as next week. It won't affect the healing of the surgical site like other kinds of chemo. Once the site has healed, the other chemo can be started.

I'll be receiving chemo both systemically and intrathecally. The spinal cord is known as a "sanctuary site." There is a physical and chemical barrier which prevents toxins from reaching the spinal fluid, and that makes it difficult to treat the mantle cell which has invaded my central nervous system. That's why we are using the Ommaya reservoir; the chemo can be put directly into my spinal fluid where it will circulate through those bad cells. In addition, the chemo will be put into my chest port, to take care of cancer cells in other places in my body.

I had a PT session yesterday afternoon. It didn't seem like I did that much, but it sure made me tired. The low platelets and white cells probably account for that, though.

In addition to the bone marrow biopsy and platelet transfusion tomorrow, I have another MRI scheduled on Friday. Dr. B wants to take a good look at my lower spine again, to see what the radiation has done to the cancer cells.

Enough boring cancer stuff. Hope your week is going well!

Saturday Morning

I don't know what the heck they used in my hair for the ommaya surgery, but I suspect axle grease. I have washed and washed my hair, and it still won't come out. I am going to use Dawn dishwashing soap the next time--you know, the stuff they use on seagulls that get caught in an oil spill? Seriously, I think that's the only thing that might work.

Other than that minor frustration, things are going well. My doctor called yesterday and wanted me to go to the hospital for labs, to make sure that my platelets were okay over the weekend. Josh took me over there about 3 PM, after picking up Reece at school. The doc never called me to tell me to come back for a platelet transfusion, so I guess my platelets were okay. I feel okay, and have no bleeding or bruises. I have an appointment to see him on Monday.

On the way home from the hospital yesterday, we got rained on! It was so nice to smell the rain. It wasn't much, but it was so welcome. As we got out of the car Josh said that he should have gotten the umbrella for me, and I told him, "No, it feels good to feel the rain!" Maybe we'll have a nice rainy fall to fix this drought.

Reece and I slept in this morning. It felt so good to wake up with him snuggled next to me. He came in last night before 9 and said he wanted to take a nap. Of course the nap lasted all night long. He slept the clock around, plus some! Then Papa brought us doughnuts from Shipleys for Saturday breakfast. Yum! He had chocolate frosted and I had cinnamon sugar.

Not sure what the weekend holds. More rain, I hope!

Ommaya Is In

I had the ommaya reservoir put in on Tuesday. My platelet count was too low on Monday to do it, but Tuesday morning they gave me lots of platelets and then I went right up to surgery while my count was high. I spent the night in the hospital Tuesday, came home Wednesday morning.

There was no problem with the surgery. Now we have to let my head heal before we can actually use the device for chemo. The neurosurgeon didn't even shave my head, but put it in a part. He said he made a small slit and slipped it into the incision like a pocket. It hurts a little bit, like I bumped my head really hard, and I have a slight headache sometimes, but Tylenol takes care of that. The soreness will go away in time. Seems weird to think I have something in my brain.

When I got home yesterday, I stayed downstairs to spend some time with the little girls. They were happy to see me and I enjoyed watching them play. We had lunch together, then I came upstairs, where Reece found me when he came home from school. He was glad to see me, too. He and Aubrey watched videos on my computer on my bed, but I got so sleepy I fell asleep and their daddy took them downstairs. I napped the rest of the afternoon, and when I woke up there was beef and veggie kabobs and roasted potatoes for dinner.

I thought I'd be up late, but Reece wanted to sleep with us last night, so I lay down with him about 8:50 and we both went right to sleep. I slept again until 6:30 this morning when he got up. He has gone to school now, and I miss him.

I don't have anything I have to do today, and I'm glad. I don't want to go anywhere, especially the hospital.

Little Updates

I have some powerful prayer warriors out there praying for me. Thank you!!!!

My doctors let me come home from the hospital yesterday evening, which was a big surprise. They said that they could do what they were doing for me on an out-patient basis just as easily as they could do it there. I'll go back tomorrow morning to see if my platelets have stayed up. They went from 6,000 to 86,000 overnight, after I received a platelet transfusion Friday night. Made me feel much better.

I won't know whether they will go ahead with the ommaya reservoir surgery until we get the results of my lab tests in the morning. If they go ahead with it, it's scheduled for 10 AM.

Josh made spaghetti for dinner last night, and grilled chicken in raspberry marinade tonight, and I cleaned my plate both times, which is unusual for me lately. I've had very little appetite. But being home and Josh's home-cooking has been good for me. :o)

I got to spend quite a bit of time with Reece over the weekend, which is always a blessing. He just calms me and makes my heart happy.

We learned on Thursday that his whole class has been reassigned to different classes. The school had four kindergarten teachers, and fewer kindergartners than they expected. So they reassigned Reece's teacher to another grade and distributed her students among the other three teachers. We were all distressed about it because after three weeks he had settled in and loved Mrs. O and his classmates, but he doesn't seem to be upset about it. They went to their new classes on Friday, and he likes his new teacher, too. Some of his original classmates went with him. I'm sure he will adjust just fine, but I am sorry that he has to go through this change.

I went to his school on Thursday for Grandparent's Day. I took a book to read to his class. When I got there they were doing the cutest little dance, and Reece was watching his classmates more than he was participating. He had a big sweet smile on his face as he watched them, and now and then he would do one of the actions along with them. It was so typical of him. When they finished and turned around, I was sitting in the rocking chair and he looked so surprised to see me. I had told him I'd be there, but he must have forgotten.

I read to the class and they were all very cute and responsive. After that Reece and I went to the library together for juice and doughnuts. It was fun. I was afraid he would get upset when I left to go home, but he didn't. By then there was another grandmother in the rocking chair, so when we got back to his room I told him to go sit on the carpet and hear the story, and he did. He gave a little smile and wave and settled right down.

Hope you've all had a good weekend, and that the upcoming week will be a great one.

In Memory

A Saturday Hike

Jason took Lily and Jacob hiking in a park near their home on Saturday, and sent me some pictures he took with his phone.

Jason and I talked by phone on Friday, and he was recalling how he and his friends roamed the creeks and forested areas around where we lived in Missouri when he was a boy. He said that he wishes his children could do that, but we agreed that the world is not quite the same place it used to be. I'm glad that if they are out exploring parks and hiking trails that he is with them.

He said that Lily's mission was to see a rabbit, and they did see one on the way back to their van.

Jason said, "I forgot to mention that Lily saw a cardinal, too. And we found a dead tree with lots of holes in it, apparently the frequent target of woodpeckers that I've heard in those woods (although we didn't hear or see them on this hike). And the kids learned about a squirrel's danger/warning bark. Oh, there was also a BIG fallen pine that crossed the creek like a bridge. Jake wanted to go across it, of course, but I convinced him it would be a bad idea.

It was a long way for little legs to walk: two-and-a-half miles, round trip. They were tired, but when we got back to the van and they had some water from a fountain (they'd drank all their water from the water bottles) I asked them if it was too long, too short, or just right, and they both said 'just right.'

Jake kept talking about computer games, at first. Then he started finding cool rocks and sticks and bamboo. He was also impressed with Lily's discovery of ants carrying leaves. He looked for snakes and alligators, but couldn't find any."

I loved hearing about their hike and seeing the pictures. I asked Jason if I could share them on my blog, since I don't get to blog about his family as often since we aren't together every day. I'd love it if we lived closer, but at least they aren't all the way across the country or in another part of the world. They are three hours away, and we see them every few months.

Thanks for sharing your hike, Jason, Lily and Jacob! I love you all so much.

Crud, Crud, Crud, Dang.

I am back in the hospital.

The next step in my treatment plan is to have a thing called an ommaya reservoir placed in my head. It would be used to administer chemo directly into my spinal fluid through the reservoir in my brain. Sounds awful, I know, but wow, how amazing that they can do such a thing. The procedure to put it in was to be done on Monday.

So today I had to come to BAMC to for pre-admission, which included paperwork, labs, x-ray, EKG, etc. We finally got out of here around 12:20 and went to lunch. When we got home, the hospital called and said I had to go back to the lab in the morning because my platelet count was extremely low. So low they thought there was an error. Then my doctor called and told me he wanted me to come back NOW, get another lab test, and be admitted.

The low platelet count is rather sudden, and they believe that it is from either the radiation or that the mantle cells have crowded them out. The most likely case is that it's the radiation, since they just finished irradiating my low back/spine last week. The last labs I had didn't show anything wrong. I've had some blood when I blow my nose, I've felt extremely fatigued and lightheaded, and I've had some weird bruising over the past week, and now we know why.

So, here I am, back again, in the very same room I was in a month ago. They accessed my new port for the first time today to draw blood. They will be giving me platelets as soon as it is crossed and matched.

I don't know if they will go ahead with the ommaya reservoir on Monday or not. We'll have to see how I do, and if I can keep my platelet count up.

Not sure how long I'll be here. As always, your prayers would mean so much to me. Thank you!

Happy Birthday, Mom!

Today is my mom's 85th birthday. I feel so bad because we were not able to have the little celebration we had planned for her. Everyone here has been sick for the past week or so. Ron took her medicine to her today, and also took her some flowers and dinner for the two of them. He is such a sweetheart. He said that she was still in her PJs when he got there, and had forgotten that we had planned to take her out to eat. He assured her that we would have a belated birthday celebration later on this week or next weekend, and she was happy with that.

I had my physical therapy session on Friday, and will go twice a week for awhile. The therapist gave me some exercises to do at home, but I didn't do them over the weekend because I felt so bad. It has nothing to do with the cancer or radiation (I don't think), but is from the cold virus or whatever we all have. I think Reece brought it home from school. Nausea, fatigue, chest cough, runny nose and just a general sick feeling.

After all these 100 degree days, it is finally beginning to cool off a bit. The low in the morning is supposed to be 59 degrees. However, we are desperate for rain. There are wildfires all over Texas, including one in a large subdivision just north of San Antonio. You can smell the smoke outside.

Enough of my rambling. I don't really have anything to say tonight. :o)

Friday Update

It's been a busy week. My radiation treatments were completed with focus on my lower spine Monday, Tuesday and Wednesday.

On Monday I also had the MUGA scan (which took nearly 3 hours to complete). On Tuesday I met with one of my doctors, who gave me the run-down on the plan they've come up with for my treatment. She was very excited about the movement I'm regaining in my toes and feet. My radiation oncologist said that things should continue to improve over the next few weeks as the radiation continues to do its job. I met with the people who put in the port line that day, too. I had only radiation on Wednesday, and a stop at the pharmacy.

Then yesterday morning they placed the port in my chest. I was sedated for the procedure, and was sleepy and groggy all day yesterday. They will start the chemo in 7 to 14 days. I'm sure I'll have some scans to see where things are before we begin. I'll be in the hospital for a few days for the chemo. The treatment plan is a bit complicated, and I'll explain more as we go along. My doctor has been talking with experts all over the country, and is excited to have found a treatment that seems very effective on my kind of cancer, but is still experimental. We will be taking things a step at a time, depending on how I react to the treatment.

Meanwhile, I'm relieved to have the radiation finished and have a break before the chemo starts. I plan to enjoy the long weekend. Monday is Mom's birthday, so we'll have a special celebration to look forward to then. And next week on Thursday I am planning to visit Reece's classroom for Grandparent's Day. I'm supposed to take a book to read to his class. :o)

Reece is still enjoying school. He is not a morning person, but he still gets up and never complains about going. His parents met with his teacher earlier this week, and she said that Reece has not been participating or interacting with her or the other kids. He isn't completing his work. She was surprised when the kids told her how much he loves going to school. And we were surprised that he wasn't interacting. It sometimes takes him a long time to get used to new things; he likes to stand back and watch for awhile. I'm sure that he just needs a little more time to get used to things. I'd love for his teacher to be able to see how he is at home. We have been talking to him about how important it is for him to do what his teacher tells him to do. He likes her very much and I know he wants to please her. Please send up a little prayer for him! Thank you.

I have my first physical therapy session this afternoon. I'm not sure how much help it will be, since my problem is more with my nerves than my muscles, but we'll see.

Kelly was here on Wednesday to pick up Gran's meds and help me out with some cleaning in my bedroom and bathroom. She took Gran to lunch at Olive Garden yesterday. They had fun.

Well, that's how the week has gone here. I hope you all have a lovely long Labor Day weekend!