Saturday, May 22, 2010

It's been a rough morning with Ryan. I went into his room and pushed his meds this morning at about 10 am. He was still sleeping quite soundly. At 12.30 pm I went back into his room where he was sleeping, but his eyes were partially open. I decided to get him up.

As soon as I walked out of his room, he started vomiting. A lot. I couldn't even get to my room. Thankfully Dwight was able to come help. By the time I got to my room, he had vomited 3 times. In between, he was going right back to sleep. We finally drained off an ounce of food using his mic-key button. Then we showered him off. He vomited again in the shower. As soon as we got him out of the shower, he went right back to sleep.


I wish I had a specific manual on Ryan. One that would tell me exactly what to do and when to do it. I wish we could get him stabilized. I suspect it is the new medicine that is making him so sleepy. Or, perhaps he has a flu.

This all brings up a topic that has been on my mind for a couple of weeks... Enduring. Enduring Well.

I need to spend some time working on enduring and how to endure well. Maybe later I'll blog about it. I need to attend to Ryan for now. Please keep him in your prayers. I'm sure thankful God trusted us to send this special little guy to our family. I hope we can do all that is required of us for good.


The guys (minus Ryan) went camping last night. They went to a state park to meet a bunch of other Fathers & Sons. However, the place was so covered in mosquitoes that it apparently looked smokey. Yuck. After just a short while, they decided to roll up camp and go home. So, last night they camped in the back yard.
(I took this picture from an upstairs window. The screen really gets in the way, but you get the idea.)

This morning when I woke up, I remembered that the lawn sprinklers are set to go off on Saturday morning at 2 am. I was concerned as their tent was pitched right by one of the sprinkler heads. If it went off, it would have sprayed right into their tent. But, lucky for them, ... and probably for me too, when I reset it on Thursday to adjust for the rain, I accidentally set it to go off on Friday morning at 2 am. Whew! :)

They all seemed very content with their camping experience.

Friday, May 21, 2010

Metabolic Test Results

I called the Metabolic Geneticist, Dr. Gibson, today to get Ryan's test results. It's been a little over 6 weeks. All of the results were back in and I suppose the good news is that they were all normal.

Honestly, it was also a little disappointing. I had hoped that we would find a diagnosis that would explain his medical issues and something we could easily treat to improve his prognosis. Yet I'm very thankful that we didn't find a devastating diagnosis.

We'll just continue to pray for the very best knowing that he is in His hands, and work like it all depends on us.
I just got back from having my biopsy done. I love Dr. Dotson! He's just such a good guy. His nurses are both fantastic as well. They did a larger biopsy this time to be sure to get a good tissue sample. He thinks it may just be inflamed from the scar tissue. He commented on how good the other 5 spots look. There really are no lumps or inflammation at all on 4 of the other spots. Just the 2 still look a little suspicious. We will get the results back in 7-10 days. I'm looking forward to those results.

I also stopped by the Oncologist's office and received my Neulasta shot that I was supposed to get yesterday. The lady who gave it today doesn't push it in as slowly as Matt does. So, it stung. Of course, part of it may just be that my pain threshold was a little low from the 5 shots of lidocaine they gave me before the biopsy.

Thursday, May 20, 2010

I'm Red!

Yup, again. I'm red, dark red. I'm not running a fever though. I should really be asleep but I can't sleep for some reason. I have an itchy rash on my arms.

I have my biopsy and neulasta shot tomorrow morning. (Yes, I was supposed to do that shot today, but conveniently forgot as I took a nap instead.)

Ryan had a pretty bad seizure again today. He wasn't breathing well after it. It upset him a lot. Me, too, actually. I look forward to getting his seizures under control again. He cried for about an hour and a half after the seizure. He never cries very much at all. On one hand, it was good to hear his cry. On the other hand, it was hard to watch him looking so scared.

The other kids all had a great day today. Jessica had an honor society meeting this morning, thought today's end of year test was super easy, and then she went to a concert at the high school to watch one of her friends perform. Jacob, David, Johnathon, and Deborah spent about 9 hours at one of their favorite places and returned home exhausted from all the fun. They went to the library and played in the pool for a long time. They are all sound asleep now. :)

Ryan and I had a good day overall too. Two sweet, sweet ladies came over today to help me get some cleaning done. They did so much! Thank you both! The house looked so nice and with just Ryan and I home alone today it stayed that way all day. Not a common occurrence with 6 kids in the home. We rested a lot today and I got caught up on some of my employment program stuff as well as I was able to index about another 150 names.

Have I told you about indexing? It's one of my favorite things to do. I'm hoping to break my previous record of 10,000 names in a year. If you haven't tried it, you should. It's fun!

Well, g'night all! Meds are kicking in and I have an early day.
So the new anti-nausea meds worked in that I didn't throw up last night. I'm still dealing with a little bit of nausea, but nothing like the other 3 times. This time my legs feel like I've ran a marathon. I'm not sure why that's happening. And, I have an awful headache.

Thankfully, Ryan and Deborah both slept pretty well last night. See, prayers work!

Wednesday, May 19, 2010

Before my chemo treatment today I met with the Oncologist. He was warm and friendly today. He's always professional and nice, but he was warmer today than usual. I liked it. Things are looking encouraging. I'm going to schedule a biopsy, hopefully for next week. We also talked about long-term maintenance plan. When we finish this course of chemo, I will be doing one treatment of a targeted drug therapy every 6 weeks for the next 2 years. It has side effects, but not as many as this chemo regiment.

My blood levels all looked really good today. To keep my white blood cell count up, he's ordered me another Neulasta shot for tomorrow afternoon. Yuck. The nurse suggested that I take a pain pill tomorrow evening before the pain starts to see if that makes it more manageable. I'm really not a whimp. It just hurts.

Chemo went well. I love the nurses who take care of me. They are the nicest ladies. Not only are they really good at their jobs, but each of them have great personalities. They also work so well together. I imagine that's not always the situation for 4 women in that type of situation.

As usual, the first few hours after chemo I felt pretty good. Tonight I've noticed a weird feeling in my legs. They kind of feel like noodles. I'm a bit tired and the headache has just hit. I'm going to take a new anti-nausea medicine tonight to see if I can avoid vomiting. It just happens to be one of those things that I like to avoid lately. :)

Let's pray that Ryan and Deborah sleep better tonight than they did last night.

I know I say this often, and I hope it never seems like I'm just repeating myself thoughtlessly, but I truly truly appreciate all of you! I appreciate the prayers, the notes, the meals, the rides, the play dates for the children, the help, the kind words, everything. I appreciate all that you all do. I look forward to serving each of you! My time will come and it may not be much longer. :)

Round #4 Today

Yesterday and today I have felt really good. It was really nice to have some energy, especially since Monday and Tuesday were busy days. But, it's time again. I hope this round goes well. I'll keep you posted. Thanks for all your prayers and support! Please pray that this treatment is effective and we can get this blasted cancer into remission for many, many years.

Monday, May 17, 2010

EEG Follow Up and Neurologist Appointment

Today was our follow up visit with Dr. Seals, the best Neurologist ever. His staff is so good to me. I know they have a tough job. I'm sure it's tough to be the one that has to face patients when he's running hours behind schedule. I just love that they are always so kind to me. They always give me a heads up on how long it's going to be and then they tell me I can leave if I want. But, today I had a movie with me and a book. So, I just waited there. (I'm watching the first season of Columbo. Do you remember that show? I love it!)

Anyway ... I reported that with the increased dosage of Lamictal, Ryan's myoclonic seizure activity has dropped from 20-30 per day to about 9-12 per day. I also talked with him about the choking and the strange repetitive choking-like behavior that seems to proceed the really bad choking episodes. After I described it, he said that it was certainly seizure behavior. We're going to see if getting the seizures under control will help the choking incidents.

Then we looked over Ryan's EEG print out and the report. The overall activity is slower than is typical for Ryan's age. There were also frequent spikes in activity indicating seizure activity. (I thought that was especially interesting because he was asleep for the entire test & did not move. I had assumed that if we weren't seeing any body movements that he wasn't seizing. I guess that was wrong.) The spikes representing the activity on the left side and the right side, while generally occurring at the same time, were not the same, which indicates the need to add an additional medicine. Doesn't sound like the best news from an EEG; however, Dr. Seals assured me that this EEG result was better than the last EEG.

So, we'll add the new medicine and go back to see him for another follow up in a month.

While I was at Dr. Seals' office, I had him complete the necessary paperwork for us to get the plates for handicapped parking. Wow. Life has changed in 2 years. On the paperwork you have to mark whether it's a temporary or permanent need. Additionally, when turning in the paperwork you have to reaffirm whether it's temporary or permanent. Temporary in their terms means 6 months. Sadly, this probably isn't temporary in their terms. That was a little hard to acknowledge.

But on my way home, I thought but it is temporary. I hope Ryan will walk soon. If he doesn't walk it will make life much more challenging for him. I don't want it to be that hard for him. But, I know that Ryan will walk some day. If not here during this earth, then in the eternities. I'm so thankful to know that some day Ryan will be made whole. He will be able to communicate easily. His hands, his legs, his mind will all work perfectly. And, I will sit at his feet and learn from him.

(Ryan seems to be very comfortable in his wheelchair. He typically goes to sleep within 15 minutes or so of being put in the wheelchair. And, it's not his avoidance sleep either. It's a deep, sound sleep.)