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...

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!

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.

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?

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.

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.

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.

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 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."

Isn't it beautiful?

WEIRD!

Okay last night ... that was a really weird sensation! When I first laid my bald head down on the pillow it just felt wrong. It's just the strangest sensation. And, it's cold too! I tried putting on one of Dwight's sweatshirts with a hood, but that felt odd too. I think I'll go buy myself a soft sleep cap today.

What I know...

Tonight I taught interviewing skills at our weekly employment workshop. I love the workshops. I love the candidates and the other specialists! It really is a treat to be there each Thursday evening.

As I drove home tonight I was thinking of some of the concepts that we discussed. The 2 that really stuck out in my mind are:
1) It's all attitude.
2) Let your light shine.

Let's talk about attitude. In an interview, an arrogant attitude will land you no offer and a shy, bashful attitude will not help you either. However, a confident attitude goes a long way in making a good impression.

It's also true about life. I bet you've noticed that, too. What I can testify of today, that I might not have been able to do before, is that attitude also helps you in adversity. What I know, without any doubt at all, is that God will work every trial, every irritation, every adversity, every weakness to your good ... IF you will allow Him. AND ... IF you will, you will see his tender mercies all around you. I know without a doubt that you will. It's all about the attitude.

(Please know that I am not saying that the road will not be hard or long. I just KNOW that He will not leave you comfortless. I know it.)

And, #2 ... Let your light shine!!!

I frequently see candidates who really don't know how to speak of their talents and/or accomplishments. Often they want to tell the mock interviewer all the reasons they aren't the perfect candidate for the job. This always brings to mind the following scripture:

"Therefore, let your light so shine before men
that they may see your good works
and
glorify your Father which is in Heaven."
~Matthew 5:16

You probably remember this chapter. The Savior is speaking to his Disciples. He preaches what is usually referred to now as the "Sermon on the Mount." Remember, "Blessed are the ___; for they shall ____." It's a great chapter. I love the part about the salt. In our day it seems a little odd to say, "Ye are the salt of the earth." But, when you think about salt and it's significance, it really brings a whole new meaning to this chapter. (I'm off on a tangent. I will bring it back, I promise. But, you should check out this article on the significance of that statement. What is salt really? Great article.)

Anyway... back to Let your light shine!

Can you bring people to Christ if you won't communicate with them? No. Can you bring people to Christ if you have no confidence? No. Where did your talents come from? (And, yes, YOU DO have them!) from HIM! Let your light shine! The interview is the place to communicate your strengths. You don't need to be boastful or prideful. Just share them.

Come to think of it... an interview isn't the only place to do it. Sometimes I'm amazed at the talents my friends have. Friends that I've known for years. Why haven't you shared your talent before? Do not hide that which God so lovingly gave you.

That's what I know.

PS... I haven't met anyone yet who doesn't have talents. And, yes, I meant to say talentS.

And, it's GONE...

Monday night you probably remember that we did a "Going, Going, and (almost) Gone" edition of Family Home Evening. Well, today my dear friend, Michelle, came up to remove the (almost).

Monday night as Jessica was cutting my hair, Deborah looked up at me and said, "Don't you want your hair, Momma?" Oh, so sweet. The little lady just melts my heart.
I wasn't sure what she'd think about today's session, but she came in the room while Michelle was shaving my head. So I asked her what she thought about it. She looked at my hair for a minute and then happily responded, "Awesome!"
I wasn't sure what I'd think about it. I thought I'd be fine with it, but the other night was a little shocking. It wasn't my hair that I was feeling anything about it, but I obviously felt something. While I was talking with Jessica later that evening, we both agreed that it was more the reality of cancer that we both felt a little sad about that evening. The hair will grow back. (And, yes, my dear Johnathon, my friends will still love me without my hair.) But, the reality is I really do have cancer and it really does stink having cancer.

So, how do I feel today? I feel relieved.


I'm so thankful to have such a huge support system! I can't imagine doing this without you all. Thank you for sharing in my journey!

And, Michelle, thank you again for being willing to do this sweet act of service for me!

I know you're anxious to see pics of the big hair cutting session. Unfortunately though I've had a weird response to this week's chemo. I'm bright red, running high fevers, and feel quite miserable. Thankfully, this will pass, right?

I promise to get the pictures blogged soon. Thank you all for your prayers and support!

Papa and Ryan

Papa (my Dad) has been visiting since Tuesday and will be here till Friday. It has been so nice to have him here and he has been so helpful! We sure love and appreciate him!

New Pics of the Medi-Port

The bandages were causing my skin to get really itchy, red, and even raw. So, tonight I took everything but the steri-strips off. Here's what it looks like... (please excuse the neck wrinkles) ... I couldn't decide which was the best picture so you get to see them all ... except for the one that made me look like I had a LOT of neck wrinkles ... I deleted it.