Ryan's mic-Key Button

We changed out Ryan's mic-Key button again today. (I'll spare you of me singing the song, yet again.) It's the exact same, just a new one. It took all of about 10 minutes. In fact, our appointment was at 2 pm and I was in my car pulling out of the hospital at 2.02 pm. I wish all appointments were like that. :)

The scriptures tell us to liken them unto ourselves, right? Well, today as I was driving, I realized here's how the beginning of Doctrine and Covenants 123:17 is likened to me:

"Let us CHEERFULLY do all things (including driving) even while on Prednisone!"

Man, I am one impatient driver on Prednisone. Today I was driving up a very heavily congested street and was just unwilling to let anyone pull out on to the street. Normally, I let a car out of the parking lot. Not today. In fact, one lady was very aggressively trying to cut me off... I won.

I hope it wasn't any of my friends. Even if it was maybe they didn't recognize me since I was driving a rental SUV. :) Whew.

The Good Effect of Prednisone

I hate Prednisone. You may remember that from previous posts. I think the saddest picture ever taken of me was taken just after finding out chemotherapy would involve Prednisone. However, I have found a side effect that I like. (Forgive me if this seems inappropriate to share with the world.) So... drum roll, please ... it gives me bigger boobs!

Whewhoo! ... or is that a Whoop, Whoop!

(Too bad it's a very temporary side effect.)

Change of Plans: Chemo is back.

The good news didn't change. The biopsy report still showed "no residual disease." Whewhoo! However, after reconsidering, the Doctor presented two options to me today when I went for a consultation before the schedule "maintenance treatments." We could continue with the plan of moving immediately to the "maintenance treatments" of once every six weeks for the next 2 years, or we could do the more conservative, safer route of 2 more aggressive chemotherapy treatments.

Obviously, what I want is to have to do nothing. What I want is to be a Mom and a Sweetheart with the time and energy to show my family how important each of them. What I want is to never feel sick to my stomach again. What I want is to ... well, it's not making me feel better to list the things I want but don't have right now.

So, I'll tell you the story instead.... during the past weeks, on a couple of occasions I have heard the quiet whisperings of "You really need to finish out the chemotherapy." But, I didn't want to do it and it wasn't what the doctor recommended. So, I ignored. (Geez, as I typed that just now, I thought, "You'd think I would have learned. Heavenly Father told me to that an aggressive treatment would be effective, but we spent 2 months treating it with the less aggressive method cause I didn't push to be more aggressive. I really need to listen and act.) Anyway, so when he brought up the 2 options, I immediately knew that what I needed to do was to finish what we started and then go to the maintenance option. So, that's what we're doing.

When I told my sweetheart, Dwight, about the doctor recommending 2 more doses of chemo, he said, "I felt impressed that you were quitting too soon." He is so kind to allow me to get my own answers, but I really appreciate when he shares his feelings and impressions with me. He helps to reinforce my confidence that what I'm feeling is really coming from Heavenly Father and not just from me. Do you ever need that second witness?

Anyway ... thank heavens for a doctor who is willing to be humble enough to continuously be learning. Thank heavens for the technology that allows doctors to share all their findings and to learn from one another. Thank heavens for the angelic staff that takes such good care of me while I'm there. And, thank the heavens a few times for a port that allows me to get stuck only once instead of 3 or 4 times!

The treatments went well today. I'm feeling a little weird right now. I will say that I was a bit disappointed to know that I'd have these side effects 2 more times. Yet, I know it is the right decision. I'm so thankful that I know I have a Heavenly Father who loves me and cares so much about every detail of my life!

Oh, and I'm thankful for the good friends who helped today: My mother-in-law has been such a sweetheart to be here with the children and such a joy to talk with. My friend (and Ryan's friend) who played with him and loved him ... and even likes me! My friends who brought over a really, really delicious dinner, chicken & dumplings. Yummy! Ya'll know how to cook!

And, now I'm off to bed to try and get some sleep. Ryan is having his mic-KEY button (m-i-c-k-e-y m-o-u-s-e ... can you read that without thinking of that song?) ... sorry ... he's having it replaced tomorrow. I'll let you know how it goes.

Keep those prayers coming, kay?

1st Grade Sooper Storeez

This is a little booklet that my 1st Grade teacher, Mrs. Karen Shoemaker, put together of her students' work. I remember being very proud to share this! I'm posting it here to share with all of my classmates. (If you click on any of the pictures, it should make them large enough for you to easily read them.) Hope you all enjoy!

"Let us cheerfully do 

all things that lie in our power;

and then may we stand still,

with the utmost assurance,

to see the salvation of God,

and for His arm to be revealed."

Back in 1839, the LDS people were being strongly persecuted.  The people who just wanted the same religious freedom that brought our founding fathers to this country were being very mistreated.  Tarring and featherings, crops and homes destroyed, people hurt, etc.  Their Prophet, who was later shot and killed, was in jail. It was a time of great adversity.  The above counsel is what the prophet counseled them to do.  

It applies to all of us, doesn't it?  We all have trials.  We all face adversity at times.  Isn't it wonderful to think that if we cheerfully do all that lies in our power ... not just the easy stuff, not just the fun stuff, but ALL that lies in our power, we can then know with the utmost assurance that the blessings will come.  It just makes my heart glad to think of it.

Thanks, Doug, for bringing this scripture to my attention!  The kids and I have had the best discussions about this scripture and what it means in our family.  Thank you!

Yesterday was the best celebration!  About 20 of my friends met me at a local restaurant and we had lunch together.  It was so joyful!  These are just some of the women who helped me to get through the last year and half, both with acts of kindness, prayers, and words of support.  I wish everyone who has blessed our lives so much could have been there.  It was a joyful celebration!

One thing that really surprised me was that several other restaurant patrons came up to congratulate me on me cancer free.  Wasn't that sweet?  (Oh, you might be wondering how they knew?  One of my friends brought the cutest white balloon and it said, "Tina is Cancer Free!" on one side and the other side had a a big X through the word cancer. So cute!)  One lady even gave me her business card.  She is the owner of the "Posh Salon."  So, she offered me a complimentary makeover.  How fun, right?

After the party, I took Ryan to the Pediatrician.  After what seemed like an eternity of torturing him (ie washing out his ears), they were still unable to see in them to definitively diagnosis them as being infected. His ear canals are a little misshapen.  The wax doesn't drain well and it tends to build in there.  They did a pressure test and those didn't give very good results either.  The left ear showed a lot of built up pressure and the right ear just flat lined.  So, we started him on antibiotics and we'll be going back into the Ear Nose and Throat (ENT) Specialist to discuss what to do.  This is his 4th ear infection and he's ruptured his right ear drum 3 times.

He was so frustrated by his time at the dr's office that he slept all the way home.  We got home just in time for occupational therapy.  DeeDee and I thought he might enjoy a walk outside in his wheelchair.  It's good for him to get used to movement.  It was short and when we came back in from the walk, he was asleep.  He slept through most of therapy.  He was just wiped out.

So, then I took Jessica shopping for supplies for her new job.  She's really looking forward to her new job and I think it'll be a good experience for her.  I love the dentists that she'll be working for. I'm sure Jessica will do a great job.

Yesterday was a great day and a very long day.  I was really wiped out by last night.  Today I had David & Jacob watch over Johnathon and Deborah while I rested.  I'm just now getting moving ... well, kind of getting moving for the day.

PS  If you're wondering, "Where are all the pictures?"   Deborah broke the lens on my camera.  I'll get it fixed soon. 

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.)