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.
Thursday, May 20, 2010
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!
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. :)
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.)
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.)
Wednesday, May 12, 2010
13 years ago
This morning at about 4 am MST marks the 13th anniversary of the one and only time that my water broke. I was pregnant with Jacob and I woke up when I heard a popping noise. Then I rushed to the restroom cause I thought I had just peed the bed.
I had heard from experienced mothers and read in books that sometimes the weight of the baby makes it hard to hold your urine. I had also (heard what I considered to be nightmare) stories about women who thought their water broke in public ... like at the grocery store ... only to find out that it wasn't their water. It was their urine.
I was confident I didn't want *that* to happen. So, when I didn't mention it to Dwight. Instead I played solitaire while I tried to time contractions. But I wasn't really having any contractions. My back just hurt.
So, I took a shower early in the morning, played some more solitaire, and even called a friend. I asked her about contractions and she told me that they have a definite start and a definite stop. The pain I was feeling ... and the hardening of my stomach ... didn't really have a definite start or stop. And, it didn't really hurt as badly as I expected. So, I got ready for work.
Dwight and I drove to the office where I continued to leak a little for the next 4 hours. Just before lunch one of the other ladies on my team was telling her birthing story and mentioned the "leaking of water for hours." I thought I probably should just check with the doctor.
I called and they of course told me to come in immediately. I called Dwight and asked if he was available to go to lunch. He was. So I explained that we needed to just drop by the OB's office for a quick check. I didn't really say anything else.
When I was on the exam table they checked me. When the nurse asked me, "When did your water break?" I calmly replied, "Probably at about 4 this morning." Dwight was shocked! And bugged that I hadn't mentioned it. They told me to go immediately to the hospital. I asked if I could go get lunch first. (Remember, I wasn't in pain, just a little uncomfortable, and the hunger was obviously stronger than the discomfort.) They were bugged that I even asked.
I should have just gone to lunch cause I was starving for the next 24 hours. Ice chips. Please. Why does anyone think that a woman should be able to labor ... yes *labor* for 24 hours on an empty stomach. At least give me some jello!
Anyway ... I pushed and pushed and pushed ... well, I could go on for a while since I pushed for 2 hours! I begged for a repeat c-section, but the dr assured me that I would be glad that I didn't have one as he shoved forceps into me. Seriously, never go with the forceps. I wasn't glad. And, I still ended up with a c-section.
But what I am glad about is that I have Jacob. He's a good kid! I have learned so much from Jacob. I am a better method because of Jacob.
I'm looking forward to a day of celebration! We'll celebrate his 13 years, and many, many more to come!
I had heard from experienced mothers and read in books that sometimes the weight of the baby makes it hard to hold your urine. I had also (heard what I considered to be nightmare) stories about women who thought their water broke in public ... like at the grocery store ... only to find out that it wasn't their water. It was their urine.
So, I took a shower early in the morning, played some more solitaire, and even called a friend. I asked her about contractions and she told me that they have a definite start and a definite stop. The pain I was feeling ... and the hardening of my stomach ... didn't really have a definite start or stop. And, it didn't really hurt as badly as I expected. So, I got ready for work.
Dwight and I drove to the office where I continued to leak a little for the next 4 hours. Just before lunch one of the other ladies on my team was telling her birthing story and mentioned the "leaking of water for hours." I thought I probably should just check with the doctor.
I called and they of course told me to come in immediately. I called Dwight and asked if he was available to go to lunch. He was. So I explained that we needed to just drop by the OB's office for a quick check. I didn't really say anything else.
When I was on the exam table they checked me. When the nurse asked me, "When did your water break?" I calmly replied, "Probably at about 4 this morning." Dwight was shocked! And bugged that I hadn't mentioned it. They told me to go immediately to the hospital. I asked if I could go get lunch first. (Remember, I wasn't in pain, just a little uncomfortable, and the hunger was obviously stronger than the discomfort.) They were bugged that I even asked.
I should have just gone to lunch cause I was starving for the next 24 hours. Ice chips. Please. Why does anyone think that a woman should be able to labor ... yes *labor* for 24 hours on an empty stomach. At least give me some jello!
Anyway ... I pushed and pushed and pushed ... well, I could go on for a while since I pushed for 2 hours! I begged for a repeat c-section, but the dr assured me that I would be glad that I didn't have one as he shoved forceps into me. Seriously, never go with the forceps. I wasn't glad. And, I still ended up with a c-section.
But what I am glad about is that I have Jacob. He's a good kid! I have learned so much from Jacob. I am a better method because of Jacob.
I'm looking forward to a day of celebration! We'll celebrate his 13 years, and many, many more to come!
This is the "rest week" before my next round of chemotherapy, and resting seems to be about all I am energetic enough to do. I feel very anxious to return to my normal routine of life. I want to work up a good sweat, lift some weights, etc.
Weird thing ... my mediport seems to make the right side of my neck rather stiff. I wonder if that's normal. Yesterday I thought perhaps it was just cause I've been babying it and not stretching enough. So, I started doing very gentle stretching, but this morning it just feels more stiff.
Yesterday, one of my friends from Austin came by to visit. It was so fun to see her and talk with her. It really lifted my spirits to visit with her. (Thank you for coming to visit, Amy!)
Then my "gourmet friend" came by to drop off dinner and stayed to visit for a while. My kids loved that she brought 2 of her kids with her. They had a great time catching a lizard! (Thank you for visiting and for the yummy dinner!)
I also received 2 beautiful cards in the mail yesterday and a special email. One was from my Aunt Della and the other was from my Uncle Jr & Aunt Anita. The email was from my Aunt Jamie & Uncle Leslie. I'm so blessed to have a wonderful extended family. Isn't it sweet that with all of their nieces and nephews (and they do have A LOT) that they take the time to show their love for me. They've always been like that. My aunts and uncles have a great ability to make me feel like the most important person in their world. Isn't that cool? I hope I can do the same for others.
Ryan is doing well. We increased his seizure meds and so he's sleeping in each day until about 10.30 or 11.30. His myoclonic seizures have decreased from 20-30 a day to about 10-15 each day. I need to track them really closely for a couple of days before we go see the Neurologist again next week. I'm anxious to hear the results of the EEG.
Speaking of results, the results from the tests that the metabolic geneticist ordered should be in by the end of next week. The neurologist suspects they will all come back as normal. If they do, it just means that we've eliminated more possibilities and that's okay.
Weird thing ... my mediport seems to make the right side of my neck rather stiff. I wonder if that's normal. Yesterday I thought perhaps it was just cause I've been babying it and not stretching enough. So, I started doing very gentle stretching, but this morning it just feels more stiff.
Yesterday, one of my friends from Austin came by to visit. It was so fun to see her and talk with her. It really lifted my spirits to visit with her. (Thank you for coming to visit, Amy!)
Then my "gourmet friend" came by to drop off dinner and stayed to visit for a while. My kids loved that she brought 2 of her kids with her. They had a great time catching a lizard! (Thank you for visiting and for the yummy dinner!)
I also received 2 beautiful cards in the mail yesterday and a special email. One was from my Aunt Della and the other was from my Uncle Jr & Aunt Anita. The email was from my Aunt Jamie & Uncle Leslie. I'm so blessed to have a wonderful extended family. Isn't it sweet that with all of their nieces and nephews (and they do have A LOT) that they take the time to show their love for me. They've always been like that. My aunts and uncles have a great ability to make me feel like the most important person in their world. Isn't that cool? I hope I can do the same for others.
Ryan is doing well. We increased his seizure meds and so he's sleeping in each day until about 10.30 or 11.30. His myoclonic seizures have decreased from 20-30 a day to about 10-15 each day. I need to track them really closely for a couple of days before we go see the Neurologist again next week. I'm anxious to hear the results of the EEG.
Speaking of results, the results from the tests that the metabolic geneticist ordered should be in by the end of next week. The neurologist suspects they will all come back as normal. If they do, it just means that we've eliminated more possibilities and that's okay.
Monday, May 10, 2010
Mothers
Please watch this.
If you're not familiar with Stephanie's story, she is a beautiful mother of 4 children who with her husband survived a near-death plane crash in 2008. She and her husband were in a small plane when it crashed and caught fire. She was in a coma for 3 months. They both suffered from severe burns, but survived!
She has been a blogger for a long time, but she now also includes the reality of a life that has been changed forever. Check out her blog here. But be forewarned that it is addicting. You will be more thankful for the mundane in your life. You will notice all the beauty around you. You will be glad for your life.
If you're not familiar with Stephanie's story, she is a beautiful mother of 4 children who with her husband survived a near-death plane crash in 2008. She and her husband were in a small plane when it crashed and caught fire. She was in a coma for 3 months. They both suffered from severe burns, but survived!
She has been a blogger for a long time, but she now also includes the reality of a life that has been changed forever. Check out her blog here. But be forewarned that it is addicting. You will be more thankful for the mundane in your life. You will notice all the beauty around you. You will be glad for your life.
Sunday, May 9, 2010
Finished ... Finally
Happy Mother's Day!
Today has been a good day. Dwight "woke up at 4 am to make quiche and to prepare fresh berries." The quiche and the berries were really yummy! (But I'm pretty sure he bought the quiche already made and was asleep till after I woke up.) It was just nice to have breakfast in bed this morning. I then lazed about in bed till I suddenly realized it was already 10.30! Yikes! Now you know why we were late getting to church this morning.
On the way in from church, I noticed this beautiful orange flower in our front flower bed. Isn't it beautiful? I love the vivid orange color! It reminds me of my sister, Cindy. It seemed so perfect that it bloomed today. I wondered if Cindy would have sent a flower just like this one to Mom for Mother's day. What do you think, Mom?
(So, do you see the Grinch?)
Johnathon also gave me the following card:
On the left side below is our garden. See how big those tomato plants are getting? Everyone is surprised that I haven't killed the garden. I'm definitely not known for having a green thumb.

Also, notice how long my eyelashes look. Johnathon is convinced that my eyelashes have grown even though I have lost a lot of my hair. I love that in this picture, I'm still taller than Johnathon ... even if only by a small amount.
Today has been a good day. Dwight "woke up at 4 am to make quiche and to prepare fresh berries." The quiche and the berries were really yummy! (But I'm pretty sure he bought the quiche already made and was asleep till after I woke up.) It was just nice to have breakfast in bed this morning. I then lazed about in bed till I suddenly realized it was already 10.30! Yikes! Now you know why we were late getting to church this morning.
On the way in from church, I noticed this beautiful orange flower in our front flower bed. Isn't it beautiful? I love the vivid orange color! It reminds me of my sister, Cindy. It seemed so perfect that it bloomed today. I wondered if Cindy would have sent a flower just like this one to Mom for Mother's day. What do you think, Mom?After church, I had more quiche for lunch and the family gave me a new phone set since our current phones do not seem to always recharge. Deborah gave me this cute little card that she made for me today. There were even more sparkles on it, but they are now at the bottom of my diaper bag where she first put the card.
(So, do you see the Grinch?)Johnathon also gave me the following card:

On the left side below is our garden. See how big those tomato plants are getting? Everyone is surprised that I haven't killed the garden. I'm definitely not known for having a green thumb.

Also, notice how long my eyelashes look. Johnathon is convinced that my eyelashes have grown even though I have lost a lot of my hair. I love that in this picture, I'm still taller than Johnathon ... even if only by a small amount.
Waking Up
This is how I found Ryan this morning when I went into his room to wake him for church.
We bought the blue bumper to keep him from sticking his legs through the crib. I guess it didn't work so well... oh, well. He's such a patient boy. Once he gets stuck, he doesn't really cry or scream. He just calls to us every couple of minutes until someone comes in and repositions him. I'm just so glad he's moving his legs. It was a good way to start Mother's Day!
We bought the blue bumper to keep him from sticking his legs through the crib. I guess it didn't work so well... oh, well. He's such a patient boy. Once he gets stuck, he doesn't really cry or scream. He just calls to us every couple of minutes until someone comes in and repositions him. I'm just so glad he's moving his legs. It was a good way to start Mother's Day!
Friday, May 7, 2010
My kids will tell you that I have lots of "favorite people." Perhaps it's true. Perhaps I'm just very blessed to know the most amazing people on earth, or at least many of them.Recently one of my favorite people, a lady I respect and think of as the ultimate homemaker and an inspiring mother, recommend a classic book to me. She had inspired me awhile ago to become a reader of the classics. I bought a book called, "The Well Educated Mind" and started my journey with Don Quixote. Don't even get me started on my opinion about what a waste of time that was. Yes, I finished the whole book, but only because I have integrity, and perhaps a little insanity. Well, this favorite person told me that one of her favorite books is "Pride and Prejudice" by Jane Austen. I was a little concerned. See, she's a romantic and well one of my faults is that I'm not. But I was intrigued and went right home to order the book. "Pride and Prejudice" arrived yesterday. I picked it up at the mailbox on my way to soccer practice. And, guess what? Much to my surprise, it not only captivated me for 2 full hours at soccer practice, but I also read it for another 30 minutes in middle of the night when I couldn't sleep. I even read more today and am looking forward to more downtime to read. So, my friend, thank you!
Another one of my favorite people came over to visit for a while. I've told you about her before. I call her my "relocated angel" and continue to selfishly believe that her family was relocated here just for me. :) She is also an avid reader, an incredibly intelligent woman, and an amazing mother. While I enjoyed the yummy fruit smoothie that she surprised me with, we had a great conversation about Great Books. I can't wait to see her list of really great books! She really lifted my spirits today! Thank you, my angel friend for not letting me cancel today.
Tonight, another one of my favorite people who I consider to also be one of my heroes called me. She called with a simple question. An hour and a half later when I hung up, I felt so blessed that we were able to talk tonight. As she shared her experiences with me, it was like hearing a second witness of just how much Heavenly Father is involved in every detail of our life! Our stories are very different, but there are many parallels. And, the overriding theme in our life seems to be God knows each of us individually. He loves us and our lives are in HIS hands. Every single detail. I bet if you look at your life, you'll discover the same thing.
I'm off to bed now, but I just felt so blessed tonight that I had to share with you. I know many of my favorite people read this blog. Thank you for letting me share my journey with you. It helps me to remember my blessings when I share them with you! And, to all of you who I know and love and admire ... well, maybe some of you don't even realize that you, too, are one of my favorite people ... thank you all. Thank you for being heroes in your lives. Thank you for setting such good examples to me. Thank you for reminding me of what's really important in life. Thank you for loving me even with all my flaws! Perhaps some day I can tell each of you all the good I see in your lives.
Good night all...
Tuesday, May 4, 2010
I made it through yesterday with only a small amount of bone pain. I took Ryan to see his Pediatrician just for a well-child care check up. By the time I got home, I was really wiped out. I must have overdone it. Last night I started having a lot of nausea again and a severe headache. The good news is that the anti-nausea medicine actually worked. :)
The best part of my day yesterday: fresh raspberries, the best whole wheat bread ever and a yummy dinner! Thanks, my sweet friends!
The best part of my day yesterday: fresh raspberries, the best whole wheat bread ever and a yummy dinner! Thanks, my sweet friends!
Monday, May 3, 2010
No Bone Pain, please
Yesterday was a rough day. The shots they give me to rebuild my white blood cell count cause severe bone pain, especially in my lower back. I've never had such severe pain in my life. Severe kidney infection, painful. Doesn't even compare. Back labor, painful. Doesn't even compare.
I tried taking pain pills last night, but they didn't seem to help. I just kept reminding myself that the effect of the shots should wear off by Monday.
So, today is Monday. Please, no bone pain.
I tried taking pain pills last night, but they didn't seem to help. I just kept reminding myself that the effect of the shots should wear off by Monday.
So, today is Monday. Please, no bone pain.
Thursday, April 29, 2010
Ryan's Follow Up Appointments with GI & Neurologist
Ryan had two doctors appointments today.
We first went to visit with the GI Specialists to follow up on his diet and weight gain. We met with the Physician's Assistant and the Dietitian. The appointment went well. Ryan weighed 20 pounds 14 ounces and is 30.25 inches long at 21 months. (Wow, he's 21 months today.) They were pleased to see that he was so alert and to hear that he has been much more communicative with smiles and sounds. They recommended we increase his tube feeds to 40 ml/hour and continue offering juice and some fruits by mouth. We will go back in for another follow up visit in 3 months.
Our next appointment was with our favorite pediatrics neurologist. The appointment was at 10 am and I had marked off the day since we normally have a 4-6 hour wait before even getting into the exam room. I was pleasantly surprised when I arrived with my DVD player & headset, books & knitting that there were only 2 people ahead of us. The most surprising part was that the doctor wasn't even an hour behind, according to the appointment times. Whewhoo!
We had a nice conversation with Dr. Seals. I reported the concerns, specifically Ryan's increase from 1-2 myoclonic seizures each day to 20-30 sporadic myoclonic seizures each day. We also talked about the fact that he is really not using his right arm much and he's keep it stiff and pronated behind him. We also talked about the way he is flexing his little legs after therapy and not allowing them to relax again. I also reported about our visit to Dr. James Gibson, the metabolic geneticist that we saw earlier this month and gave him a list of the tests that Dr. Gibson ordered. He knows Dr. Gibson and was very complimentary of him.
After asking questions and taking notes, Dr. Seals has ordered another brief EEG on Ryan for next week with blood levels to be done the same day. I asked the reason we're doing another brief EEG as we had previously discussed at some point doing a 24 hour video-monitored EEG. Dr. Seals explained that for a child Ryan's age, he will get a lot of "noise" on the EEG that is caused by movement. He also explained that he doesn't really need an event to happen during the EEG. What he is most interested in seeing is the pattern of electrical activity, and comparing the pattern to the previous EEG's.
We are going to hold his medicines at the same level until the evening after his EEG. Then we will increase his Lamictal to 2 tablets (50 mg) twice per day. We will go back in for a follow up appointment with Dr. Seals in 3 weeks. That will give him time to have EEG results and also time for the increased medicine dosage to have an effect.
Since I had planned on being at the dr's all day, I had farmed out all the children. Most of the children went to our friend, Mary's house. (We all love that family! And, I think my children would move in with them permanently, if allowed.) Thanks, Mary! Johnathon was able to have a special date with Nana. They had lunch at his favorite restaurant followed by a round of miniature golf followed by a movie. He was SO happy this evening! Thanks Nana for making his day so special! I think it was just what he needed!
The nice part for me was that I was home much earlier than I expected. I think it was just a little after noon. The house was so quiet. Ryan and I snuggled up in my bed and just spent the afternoon resting. He is a very empathetic child. So unfortunately when I'm not feeling very well, he seems to pick up on it and gets fussy. But, every time it happens, once I pick him up and just lay him right next to me, he's fine. I believe he just needs to feel me to know that I'm okay. It really is rather nice in a way. How many 21 month old boys have you known that make such good snugglers?
We first went to visit with the GI Specialists to follow up on his diet and weight gain. We met with the Physician's Assistant and the Dietitian. The appointment went well. Ryan weighed 20 pounds 14 ounces and is 30.25 inches long at 21 months. (Wow, he's 21 months today.) They were pleased to see that he was so alert and to hear that he has been much more communicative with smiles and sounds. They recommended we increase his tube feeds to 40 ml/hour and continue offering juice and some fruits by mouth. We will go back in for another follow up visit in 3 months.
Our next appointment was with our favorite pediatrics neurologist. The appointment was at 10 am and I had marked off the day since we normally have a 4-6 hour wait before even getting into the exam room. I was pleasantly surprised when I arrived with my DVD player & headset, books & knitting that there were only 2 people ahead of us. The most surprising part was that the doctor wasn't even an hour behind, according to the appointment times. Whewhoo!
We had a nice conversation with Dr. Seals. I reported the concerns, specifically Ryan's increase from 1-2 myoclonic seizures each day to 20-30 sporadic myoclonic seizures each day. We also talked about the fact that he is really not using his right arm much and he's keep it stiff and pronated behind him. We also talked about the way he is flexing his little legs after therapy and not allowing them to relax again. I also reported about our visit to Dr. James Gibson, the metabolic geneticist that we saw earlier this month and gave him a list of the tests that Dr. Gibson ordered. He knows Dr. Gibson and was very complimentary of him.
After asking questions and taking notes, Dr. Seals has ordered another brief EEG on Ryan for next week with blood levels to be done the same day. I asked the reason we're doing another brief EEG as we had previously discussed at some point doing a 24 hour video-monitored EEG. Dr. Seals explained that for a child Ryan's age, he will get a lot of "noise" on the EEG that is caused by movement. He also explained that he doesn't really need an event to happen during the EEG. What he is most interested in seeing is the pattern of electrical activity, and comparing the pattern to the previous EEG's.
We are going to hold his medicines at the same level until the evening after his EEG. Then we will increase his Lamictal to 2 tablets (50 mg) twice per day. We will go back in for a follow up appointment with Dr. Seals in 3 weeks. That will give him time to have EEG results and also time for the increased medicine dosage to have an effect.
Since I had planned on being at the dr's all day, I had farmed out all the children. Most of the children went to our friend, Mary's house. (We all love that family! And, I think my children would move in with them permanently, if allowed.) Thanks, Mary! Johnathon was able to have a special date with Nana. They had lunch at his favorite restaurant followed by a round of miniature golf followed by a movie. He was SO happy this evening! Thanks Nana for making his day so special! I think it was just what he needed!
The nice part for me was that I was home much earlier than I expected. I think it was just a little after noon. The house was so quiet. Ryan and I snuggled up in my bed and just spent the afternoon resting. He is a very empathetic child. So unfortunately when I'm not feeling very well, he seems to pick up on it and gets fussy. But, every time it happens, once I pick him up and just lay him right next to me, he's fine. I believe he just needs to feel me to know that I'm okay. It really is rather nice in a way. How many 21 month old boys have you known that make such good snugglers?
Tuesday, April 27, 2010
I went in for my shot this morning around noon. (Did you know it doesn't hurt too bad to get a shot in your stomach?)* I was pretty red when I got to the office, but I still didn't have a fever. Since I wasn't running a fever, we're going to stay on schedule for chemo #4 followed by a biopsy. So, once again, prayers were answered. Thank you all!
*Whenever I think of shots in the stomach, I recall the night I was giving Joyce a shot in her stomach. She was pregnant with Jason at the time. I was like 13 or 14 years old and really nervous about the needle hitting the baby and hurting him. Joyce assured me over and over again that it wouldn't. So, I did it. I stuck the needle in and just as I did, Jason kicked his mom so hard that I can still see his little foot print on her belly right by the needle. It was horrific! I could never do it again.
*Whenever I think of shots in the stomach, I recall the night I was giving Joyce a shot in her stomach. She was pregnant with Jason at the time. I was like 13 or 14 years old and really nervous about the needle hitting the baby and hurting him. Joyce assured me over and over again that it wouldn't. So, I did it. I stuck the needle in and just as I did, Jason kicked his mom so hard that I can still see his little foot print on her belly right by the needle. It was horrific! I could never do it again.
I made it through the night without a fever. My stomach felt awful all night. Finally I gave in around 1.30 and took an anti-nausea medicine. Then 30 minutes later, I started vomiting. Seriously, aren't anti-nausea meds supposed to prevent vomiting, not cause it? Does that seem unreasonable to you?
I finally was able to rest starting around 4.30 and woke up around 7.30 to Deborah yelling, "Mommy, where are you?" She was panicked. It was very abnormal behavior for Deborah. Usually she just comes to my door each morning and knocks. She likes to come into my bathroom to go potty each morning. After I realized that her panicked little voice was calling out for me from farther and farther away, I went to the balcony and called back to her. She cried out to me, "Mommy, I don't want you to leave!" She kept repeating herself over and over again. I told her that I was still in bed and I wasn't leaving. I finally convinced her to come upstairs. So, she finally came up and snuggled into bed with me. I explained that I have to go to the doctors today, but that I won't be gone very long. I also told her about Nana's plans to do some fun things with her. But, what she seemed to need the most was just to snuggle with me. About 30 minutes later, she was done and off and running happily around the house.
When she got up, I went into the bathroom and noticed, dang it! I'm dark red all over. I don't feel yucky like I did after the last round of chemo. Mom says I'm running a fever, but since I've been drinking a cold shake, I can't take my temperature right now. Ugh. So, is it really a reaction to the chemo, or could it be a reaction to the so-effective anti-nausea meds?
I go back to the dr's office this morning to get my shot. It'll be interesting to see what he has to say about this. Blasted it! I thought we were going to get through this chemo without a weird reaction. I'll keep you all posted.
I finally was able to rest starting around 4.30 and woke up around 7.30 to Deborah yelling, "Mommy, where are you?" She was panicked. It was very abnormal behavior for Deborah. Usually she just comes to my door each morning and knocks. She likes to come into my bathroom to go potty each morning. After I realized that her panicked little voice was calling out for me from farther and farther away, I went to the balcony and called back to her. She cried out to me, "Mommy, I don't want you to leave!" She kept repeating herself over and over again. I told her that I was still in bed and I wasn't leaving. I finally convinced her to come upstairs. So, she finally came up and snuggled into bed with me. I explained that I have to go to the doctors today, but that I won't be gone very long. I also told her about Nana's plans to do some fun things with her. But, what she seemed to need the most was just to snuggle with me. About 30 minutes later, she was done and off and running happily around the house.
When she got up, I went into the bathroom and noticed, dang it! I'm dark red all over. I don't feel yucky like I did after the last round of chemo. Mom says I'm running a fever, but since I've been drinking a cold shake, I can't take my temperature right now. Ugh. So, is it really a reaction to the chemo, or could it be a reaction to the so-effective anti-nausea meds?
I go back to the dr's office this morning to get my shot. It'll be interesting to see what he has to say about this. Blasted it! I thought we were going to get through this chemo without a weird reaction. I'll keep you all posted.
Monday, April 26, 2010
Chemo #3
Chemo #3 was this morning. I went to the treatment center, and my Oncologist insisted on seeing my blood labs before letting them start my chemo. Thankfully, my white blood cell count was just above the bare minimum. Just enough to go ahead with treatments today. (Tomorrow I have to go in for a shot of Neulasta, to rebuild my white blood cells, which seem to always take a beating from this chemo regiment.)
They were able to easily access the medi-port, and although it doesn't feel good, it's SO much better than getting an IV, and especially better than 3-4 sticks for an IV.
The drugs went in without any reactions. They doubled my steroid dosage today in hopes of preventing a repeat of last chemo's reaction. You might remember that I ran a high fever, turned dark red, and felt pretty miserable after chemo #2. They were unable to find any trace of infection and so it was either viral or random or a hypersensitive drug reaction.
I'm praying that I don't have a hypersensitive drug reaction this time as it means we have to re-evaluate what we're doing. I know this treatment will work. We just need to stick with it. I need the doctor to have enough faith to stick with it. Today when he came to see me, I thought, "Oh, no. He's changed his mind." But, he said he wanted to go ahead and hope that it doesn't happen. How about if pray instead of just hoping it will happen? I think the combination will be much more powerful.
True to the past experiences, almost exactly 6 hours after chemo, the headache hit and about an hour ago the nausea hit. I'm trying to make it through the night without taking any anti-nausea meds cause I just don't want to risk any kind of reaction. The simpler, the better, right? I don't know if I'll make it.
I'm so thankful for the opportunity to be refined. You know, I need a lot of refining! I'm thankful that He cares enough about me, and that He sees enough worth in me to teach and mold me. I can't imagine a better teacher than the Master, Himself.
Thanks for all your prayers! I truly feel the lifting power of the prayers. I really don't know how my family and I would have done this without so many amazing people in our lives. The prayers, the food, the words of encouragement, the food, the blessings, the help with kids, the help with the house. Sometimes, I think, "Oh, this cancer thing isn't so bad." Then I realize that it is only because I am not bearing the burden alone. I could not bear this burden alone, especially not with the others I carry. But, with all of you, and with the Savior's unyielding strength, I can do ALL things.
I can't wait till all this settles so that I can see the needs and be the one to step up to help. If I serve every day of my life, I'm not sure that I will ever be able to repay the incredible debt I have to all of you. And, I know that I will never be able to repay the debt I have to my Savior.
They were able to easily access the medi-port, and although it doesn't feel good, it's SO much better than getting an IV, and especially better than 3-4 sticks for an IV.
The drugs went in without any reactions. They doubled my steroid dosage today in hopes of preventing a repeat of last chemo's reaction. You might remember that I ran a high fever, turned dark red, and felt pretty miserable after chemo #2. They were unable to find any trace of infection and so it was either viral or random or a hypersensitive drug reaction.
I'm praying that I don't have a hypersensitive drug reaction this time as it means we have to re-evaluate what we're doing. I know this treatment will work. We just need to stick with it. I need the doctor to have enough faith to stick with it. Today when he came to see me, I thought, "Oh, no. He's changed his mind." But, he said he wanted to go ahead and hope that it doesn't happen. How about if pray instead of just hoping it will happen? I think the combination will be much more powerful.
True to the past experiences, almost exactly 6 hours after chemo, the headache hit and about an hour ago the nausea hit. I'm trying to make it through the night without taking any anti-nausea meds cause I just don't want to risk any kind of reaction. The simpler, the better, right? I don't know if I'll make it.
I'm so thankful for the opportunity to be refined. You know, I need a lot of refining! I'm thankful that He cares enough about me, and that He sees enough worth in me to teach and mold me. I can't imagine a better teacher than the Master, Himself.
Thanks for all your prayers! I truly feel the lifting power of the prayers. I really don't know how my family and I would have done this without so many amazing people in our lives. The prayers, the food, the words of encouragement, the food, the blessings, the help with kids, the help with the house. Sometimes, I think, "Oh, this cancer thing isn't so bad." Then I realize that it is only because I am not bearing the burden alone. I could not bear this burden alone, especially not with the others I carry. But, with all of you, and with the Savior's unyielding strength, I can do ALL things.
I can't wait till all this settles so that I can see the needs and be the one to step up to help. If I serve every day of my life, I'm not sure that I will ever be able to repay the incredible debt I have to all of you. And, I know that I will never be able to repay the debt I have to my Savior.
Wednesday, April 21, 2010
Know what's great about Cancer & Chemotherapy?
Do you know what's great about having Cancer and going through Chemotherapy?
I do.
Let me see if I can explain ...
For years I had a lot of pain in my joints. It hurt to walk. It hurt to climb stairs. It hurt to hold my arm up to blow dry my hair. It hurt to do a lot of things. Then the doctors found a way to finally put it in remission. And, I can remember feeling such exceeding joy one day at the realization that I was running up the stairs with NO pain! None. All day ... in fact ... for months of being in remission, I felt joy ... real JOY every time I moved. It was so amazing to just have no pain. I felt blessed. I felt so thankful. I felt so happy.
So, this morning I was thinking about what a blessing it is to go through chemotherapy. When I'm done with chemotherapy and my body has recovered, I will feel great joy at having the energy to do ALL that I need to do for the day. And, I'll feel great joy at being able to taste food and enjoy it every day ... not just a few days of each month. And, I'll feel great joy when I have to blow dry my hair again. I think I might even feel joy when the alarm goes off cause it'll be great to wake up feeling refreshed again. Yes, even chemotherapy can be a blessing.
Oh, but, I am human ... and geez! I can't wait to get to the other side of this chemo stuff and to feel joy about things I have taken for granted for so many years.
I wonder what else I take for granted?
What do you take for granted?
I do.
Let me see if I can explain ...
For years I had a lot of pain in my joints. It hurt to walk. It hurt to climb stairs. It hurt to hold my arm up to blow dry my hair. It hurt to do a lot of things. Then the doctors found a way to finally put it in remission. And, I can remember feeling such exceeding joy one day at the realization that I was running up the stairs with NO pain! None. All day ... in fact ... for months of being in remission, I felt joy ... real JOY every time I moved. It was so amazing to just have no pain. I felt blessed. I felt so thankful. I felt so happy.
So, this morning I was thinking about what a blessing it is to go through chemotherapy. When I'm done with chemotherapy and my body has recovered, I will feel great joy at having the energy to do ALL that I need to do for the day. And, I'll feel great joy at being able to taste food and enjoy it every day ... not just a few days of each month. And, I'll feel great joy when I have to blow dry my hair again. I think I might even feel joy when the alarm goes off cause it'll be great to wake up feeling refreshed again. Yes, even chemotherapy can be a blessing.
Oh, but, I am human ... and geez! I can't wait to get to the other side of this chemo stuff and to feel joy about things I have taken for granted for so many years.
I wonder what else I take for granted?
What do you take for granted?
Tuesday, April 13, 2010
I have been trying to get caught back up on things that have been piling up: school stuff, paper work, scouting stuff, etc. I was able to get through most of the paperwork yesterday.
Today while David and I were writing out his goals for his Faith in God award and Boy Scouts, we heard Deborah talking just outside my bedroom door about "fixing her birthday cake." After about an hour, she came bounding through the bedroom door excited to show us her "birthday cake."
Today while David and I were writing out his goals for his Faith in God award and Boy Scouts, we heard Deborah talking just outside my bedroom door about "fixing her birthday cake." After about an hour, she came bounding through the bedroom door excited to show us her "birthday cake."
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