I'M CANCER FREE!!!!

The biopsy results are in and I'm cancer free!  Isn't that wonderful news??!!  Oh, thank you so much for all the prayers.  The prayers worked. The prayers worked!  They worked! 

(And, yes, I knew they would.)

Returning the dermatologist's phone call now... feeling anxious...

Good morning.

The bone pain has been pretty intense this round.  I can only describe the pain as feeling like little bubbles were forcing their way through my bones.  It felt like my bones were going to explode from the pressure inside them.  Neither Ibuprofen or Darvocet helped at all.  Vicodin numbed it a little. Thankfully, it seems to be calming a bit.  Two nights ago I thought I went downstairs to switch the laundry and almost cried at the idea of walking back up stairs.  My sweet Jacob heard me downstairs and came down to check on me.  He walked with me upstairs.  It was so sweet.  It was nice to have the extra support of a young man who loves his Mom. Jacob can be so empathetic and compassionate.  I love that about him.

I had reported that all the munchkins were healthy again after having some sick kiddos over the weekend.  Unfortunately, I was wrong.  Monday night proved to be a rough night for Ryan and Deborah.  Yesterday they were both running fevers and really congested.  I suspect it is just a viral thing.  I'm pretty confident that it'll just run it's course for Deborah and that there's nothing to worry about.  I wish I felt the same regarding Ryan.  Yesterday, he laid on my bed all day obviously feeling miserable.  He cried a lot last night.  Sometimes it was because he was choking and other times it was simply that he didn't want to be alone.  Once he wakes up today I'll decide whether to take him to the doctor's or not.  I'm thankful that I have a pediatrician who encourages me to bring him in whenever I feel the need, even if it is just for my assurance.

One cute little story ... last night after I had all the kids in bed, Deborah came back into my room.  "Mommy, my eyes keep spilling water when I close them.  Water and more water."  At first I thought she might have taken a cup to bed with her.  Then I realized she was referring to her eyes watering.  She is so congested that her little eyes look like they have big alligator tears in them.  It was sweet.  I gave her a packet of "special kleenex" to help dry her eyes as needed and she went back to sleep.

So, that's the excitement at our house.  In between all this stuff, I've been reading a lot about Enduring.  I am beginning to suspect that God has given me my particular challenges so that I can learn to endure well, not just to sprint well.  It's been tough with this last round of chemo to keep myself from going to dark places.  I have managed to do so, but it has required much more thought and effort.  What has helped?  Well, the usual.  Reading scriptures and other uplifting materials.  Praying.  Lots of praying.  Finding time to be with amazing friends.  More praying.  Serving others even if it's been in my limited capacity.  And, did I mention, all the prayers?

Sometimes in the midst of our challenges, especially when they have gone on for a while, it can be difficult to remember.  Remember to read our scriptures. Remember to pray.  Remember to serve.  Remember to have faith.  Remember to rejoice.  Remember Him.  Remember the promises.

The promises.  They are real.

"Peace be unto thy soul; thine adversity and thine afflictions shall be but for a small moment; And then, if thou endure it well, God shall exalt thee on high."  (D&C 121:7-8)

May it be said of each of us:  "I have fought a good fight, I have finished my course, I have kept the faith."  (2 Timothy 4.7)

Off to the fight...

Isn't this adorable?

Ryan loves to listen to us play the piano. Today I went downstairs and found Ryan parked right next to the piano. Jacob was playing and talking with him. They both were so happy.

PS The kids are all healthy and feisty again. :)

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.

Ugh.

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.

Camping

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.

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.

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!

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.

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.)

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!

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.

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.

Finished ... Finally

It's finally finished!

I know these pictures aren't great, but I just had to show you tonight. It sure has taken me a long time to wrap up this project. I'm surprised ... and very thankful ... that it still fits her.

And, yes, it may be in the 80's or 90's in Texas, but guess what Deborah will be wearing next Sunday? :)

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?

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.

(Does anyone else see the Grinch when they look at this card?)

Didn't she do a great job writing her name. She seems to have mastered the D and the e. We probably need to do a little more work on the rest.

(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!

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...