Rebecca's health update! 5/8/14

Good news!  My latest PET scan showed no visible activity!  That means they can't see any cancer cells anywhere in my body!  Chemo did its job.  However, there is still a small mass in my chest about 1.2 cm at its thickest point (was originally 19x16x11cm) that may never go away.  Because of this they are recommending radiation therapy so that we can be sure everything there is dead.  If we didn't do radiation and there were some dormant cancer cells there, in a couple of months we could have regrowth which we do not want.  So we will "nuke" the site, "its the only way to be sure." (name that movie?)
Therefore I will meet with the radiation oncologist next week and begin radiation treatments probably around the 19th.  They should take 3-4 weeks and they are 10 minutes M-F.  They shouldn't make me sick like chemo and my hair will start to grow back.  The biggest complaint from radiation patients is fatigue which can be excessive but hopefully I'll be done with treatments the first or second week of June and then the kids and I can look forward to a lazy summer of sleeping in, resting, and hanging out together.  No big, long trips for us but we'll get to spend some time with both sides of the family for a few days each.  Other than that we will just focus on getting well and making memories!
I cannot express the gratitude I have for the immeasureable love, support and service you have given us during this ordeal.  Words will never be adequate.  We love you all even more than we did before.

Baptism Day April 26th

Thank you everyone who came and supported Alyssa, and our whole family really.  It was a beautiful day and I'm so proud of my girl!

 Behind us are 3 white dresses:  The dress Alyssa and Mikayla were both blessed in, the dress myself, Aunt Meg and Aunt Jenny were all baptized in,  and Grandma Williams' temple/wedding dress which she and I were both endowed in.  I hope someday she wears the same dress when she goes to the temple.

 What a blessing!  Alyssa was able to have all 6 of her living great-grandparents at her baptism.  She had all her great-grandmothers participate in the program: GG Adamson played the piano, GG Wood said a prayer, GG Williams said a prayer and GG Blomquist conducted the music.  Not only are these women talented but they are great examples of strong, righteous woman for Alyssa to look up to.

 This girl has a special relationship with her dad and was so happy to have him baptize her.  I like this picture the best but we do have the more traditional pose for posterity's sake.

Finally, this is the video I made to show while Alyssa was changing into dry clothes.  If you don't have time to watch the whole thing, skip to the last 35 seconds or so where she bears beautiful testimony of her decision to be baptized and her faith in the Savior.  Makes me cry everytime!

Baptism Photoshoot April 7th at Temple Square

Chemo...DONE!

It's been 6 months and 12 treatments but on April 9th I finally had my last chemotherapy treatment.  Now I'm supposed to rest and recouparate for a month before getting my next scan which will tell us if/how much radiation I will need.  Here's hoping its none!
I can't begin to express the gratitude I have for all the people in my life for their support, loves, prayers, kindness and acts of service.  If I started a list it would never end.  We have been so blessed it is truly humbling!  And while my battle with NSHL may not be over, this huge hurdle is and I am happy if not eager to move on.  I have learned so many things and maybe one day I will write them all here for you to read.  For now, I keep them in my heart to reflect and grow and hopefully make me a better person.  I hope I have let this experience make me better not bitter.  Thank you for your thoughts and prayers.

Sewing Alyssa's baptism dresses while getting chemo- making lemonade I suppose.

Words of Love

I wanted to emphasize loving the people in our families this year for Valentine's day so we spent some time brainstorming words that describe why we love our family members and then wrote them on hearts on their doors.  And then we sent some "heart attacks" to some of their relatives they wanted to send extra love to this year.  In that same vein, I decided to wrap the kids' valentines presents in words of love.  This is how they turned out:

I just hope the kids take the time to read what I wrote rather than just tear into the gifts.  Especially since the gifts are just simple things I got on clearance and the words are from my heart.  

Valentine's day

I'm working on getting all my kids Valentine's done early this year since I won't be feeling great after my chemo on Wednesday.  Here's what I came up with so far:

 

I  printed them and sent them to some family out of town and then I printed them 9 to a page and we stapled them to candy for their classmates.  Done!

And life keeps rolling along...

 2013 was a busy year for our family.  Let me give you some updates.

Carter: After we started that Onfi in May he stopped having drop attacks all together!  So while he still has seizures, a couple each month, they are almost always in his sleep and not affecting his every-day life.  Unfortunately the seizures have caused some developmental delays (pretty common in seizure kids) and the hope is that as they are controlled and (hopefully) outgrown he will catch right up to where he should be.  So, this last fall he enrolled in the same Special Ed preschool Mikayla went to and we are happy to know the system and the teachers already.  He gets overwhelmed sometimes and wishes he could stay home with mommy more but for the most part he loves school.  In other news, he loves trains, dinosaurs and robots.  And he loves to play ball, doesn't matter the sport, anything with a ball will do.

  

Alyssa is in 2nd grade and smart as a whip.  Raising a child that is gifted can be exhausting so thank heavens I have a really smart husband!  Alyssa reads independently but mostly enjoys writing and illustrating her own stories now.  She has an imagination that would put nearly anyone to shame!  She still loves all things to do with space and plans to be an astrophysicist when she grows up. She is currently practicing for the school play, A Hysterical History of the Trojan War.  She also is excited about turning 8 and being baptized!

 Mikayla is in a small-group kindergarten so that she can get the personal attention she needs with occupational and physical therapy.  She is very good with computers and can lock me out of my phone!  Its crazy to me how tech-savvy these kids can be!  Mikayla is loving and kind and quite the chatterbox, always talking about the people in her life.  People are very important to Mikayla.
The biggest adjustment our family has been undergoing treatment for Rebecca's diagnosis of Hodgkin's Lymphoma.  We've had 7 successful treatments of chemotherapy and we are hopeful that after 5 more we will be able to put this whole thing behind us.  We have the most amazing family and friends who have been there through every step of this battle and we are both humbled and grateful for every blessing we have enjoyed.
Here's to a new year, (hopefully) good health, and much love!

Memorial Day

With Aunt Jenny and Uncles Jon and Paul visiting we had a really fun Memorial Day.  We did go on our yearly pilgrimmage to visit Aunt Katy's grave where the girls got to hear some of Aunt Jenny's memories of Aunt Katy (mom was too little to have any memories to share) and I think they really enjoyed learning more about their departed aunt.

My sweet, sensitive Mikayla also wanted to visit her friend Lucy's grave.  Lucy drowned a year ago and ever since Mikayla has said she is one of her angels, always nearby and making Mikayla feel less lonely.  I got directions to the cemetery from Lucy's mom, but it wasn't until I got there that I realized finding Lucy's grave was going to be like finding a needle in a haystack!  Luckily the Spirit was with us, because once I finally parked and decided to look around Mikayla pointed me in the right direction and we couldn't have been more than 50 feet from Lucy's grave site.  That little girl is so inspired!  

School's Out and Summer's On

I've been really busy with the end of school, Aunt Jenny and Uncle Jon and Uncle Paul's visits, and playing cruise director now that school is out.  But I have a few minutes tonight so lets get updated.
First, and update on Carter:
The new medication, Onfi, that is supposed to work on drop attacks is still working!  He hasn't had a drop attack since he started taking the medication at the beginning of May!!!!!  Unfortunately he's going through a stage right now where he likes to spit up his medication so we've had a few myoclonic and grand mal seizures but as long as we can get the meds down and keep them down we seem to have the seizures under control!  Which means for now we have put the dreaded ketogenic diet on the back burner and are LOVING the new freedom that comes with being able to leave our man from time to time for silly things like a DATE (something we hadn't done for, literally, 6 months) which we got to enjoy just in time for our anniversary (happy 11 years, babe!) We also have been able to take his helmet off (again provided he doesn't spit up his medication) and he's happy to run and climb and play with his  sisters.  He gets worn out easily on this medication, which isn't always a bad thing as it allows mom to get a break once in a while.  Fingers crossed and prayers said that we have finally gained sustainable stability...

Secondly, Mikayla:  The results of her muscle biopsy show that there is no disease in her muscle tissue. So now we can mostly rule out anything that would cause her heart muscle to degenerate, something that is very encouraging. Unfortunately it means we are no closer to finding a diagnosis about this girl and now we just get to watch and see how she continues to develop. Carter has now surpassed her in size, although he is a big boy, but Mikayla doesn't seem to mind.  She's really excited to start kindergarten, and just like her big sister before her, asks almost every day if today is the day that school will start.  We are so grateful for the wonderful special ed preschool she attended for the last two years and we are sad to have graduated.  Mikayla had almost her entire primary class in that preschool for one reason or another, and they had a great time together, eventhough quite the love triangle developed (or maybe quadrangle?).  Here she is at graduation with her admireres, 2 of which have already proposed:

Third, Alyssa:
finished 1st grade just as strongly as she started it.  A couple of tears were shed on the last day. This is one Momma who is proud to be wrong and so grateful I didn't change Alyssa's teacher.  Ms. East was amazing and really grew to love the kids in the class.  After kindergarten Aly wanted to grow up to be a veterinarian, after 1st she has decided to be an astrophysicist in order to prove the exhistance of life on Europa--I'm not sure what we're going to do with her after 2nd grade!

Crazy May

Its been a while because May around here is like Christmas for most people.  Its the plethora of graduations, recitals, field day, dance festival, etc that happen as school winds down.  Add to it the array of birthdays and anniversaries in our family and its busy, busy, busy!
Congratulations to my big brother, Mike and his wife Mindy on the birth of their 4th child, little Benjamin David! Born May 8th at 4:26pm

Next, for those of you wondering how Carter is doing here's the latest.   After some good weeks we lost any semblance of seizure control a few weeks ago, and not just the drop attacks but grand mal and myoclonic seizures erupting every few days.  After speaking with the doctor we were resigning ourselves to starting the ketogenic diet when the doctor suggested there was one more pharmaceutical option: Onfi.  A new medication recently approved by the FDA specifically for atonic (drop attacks) seizures.  We decided it was our last chance to avoid the upheaval  of the keto diet so after talking to the pharmacies (its a new drug, remember?) and the insurance we were able to get Carter started on it.  After 1 week he was completely seizure free!  We've had false starts like this before but we are encouraged.  We've had one seizure in 8 days!  Thanks for all the help and prayers, they are definately paying off.

Happy Easter!

Thanks for the great clothing, Grandma!

medical updates

Since I know some of you are always wanting to find out what's going on with my kid's medical issues here is a quick update:
Mikayla- had an EMG which is a nerve-connectivity test done by inserting needles into the muscle and sending an electric signal to see if the muscles are getting the signals from the brain.  Everything looks good there, meaning there isn't any nerve damage (except bi-lateral damage to her carple tunnel nerve which is probably what is making fine motor skills so delayed) so the next step is the test the muscle.  We did that last week by taking a muscle biopsy (an orthopedic surgeon made a 2" incision in her thigh nearly to the bone and cut out a piece for testing) and are awaiting the results.  They told us it would be a week-10 days for results so we will hopefully hear something any day.  They are testing for degenerative muscle disease as well as mitochondrial disease and we will see if that gives us any more clues.  She is recovered from her surgery now the proud owner of a narly scar on her left leg.
Carter- We read THE book on the ketogenic diet and the research Johns Hopkins has done regarding it and met with the dietician and nurse practitioner at PCMC that make up the Keto team there.  They sent us home with some sample menus and a food preferences/diet log to fill out.  Its a pretty hard-core diet so we not taking the decision lightly.  In the mean time we have increased his medication to the maximum dosage and the neurologist is considering adding a 3rd medication to his regimen, something we aren't too keen on doing.  So far he is adjusting to the medication well and tolerating with few side effects, in fact some days he's his old cheerful self.  We also continue to take him to the chiropractor (originally every day, now every other) and that seems to corelate with his seizure activity.  On days when he has held his previous adjustment well he has few to no seizures, on days when he is completely out of alignment he has more seizures.  We can't yet tell if the seizures cause the misalignments (injury from falling and such) or if the misalignment causes the seizures.  However because there does seem to be a connection we will continue to persue it.  Carter has good days and bad days, but we are grateful that lately it seems more good than bad.  He's had stitches twice and needed his rescue meds more than I am comfortable with but we are loving the 2-6 day stretches of seizure-free time we are having.  At this point we have to hurry up and wait to see what the next step is going to be but we have set things in motion to continue to move forward.
As always, thank you so much for the prayers and positive energy you are sending our way.  We know sometimes we can get a little myopic and self-centered but we really appreciate all the wonderful family and friends in our lives who are there to buoy us up and help in anyway they can--some days that is the only thing that keeps us sane.  We love all of you!  God bless!

Spring Break

We had a really great Spring Break this year.  The weather was GORGEOUS the whole time and Carter's seizures even decided to cooperate--in fact we went 6 days seizure free during spring break which meant we could really enjoy our time together.  Unfortunately Chris still had to work, although he got one afternoon off to join us at the planetarium.

We went to the dinosaur museum and spent time looking at the visiting exhibit about sound waves.  Very interesting.

Tuesday Mikayla had a muscle biopsy which turned out to be a little bigger of a deal than I was lead to believe it would be.  She was a great trooper but it was a true surgery.  They took a piece of muscle from her thigh to test for some different muscle diseases to see if there is anything else we can do to help her get stronger.  She is a stubborn girl and refused to take her paid meds but at least she didn't complain about pain.  She spent the next couple of days on the couch collecting get well cards and flowers (thank you Finn!)  Alyssa read books to her and played games with her sister that they could do sitting down.

Other spring break activities included going to the planetarium, the gateway, the park and hanging out with friends.  We also got to have a sleep over and grandma and grandpa's house and see cousins for General Conference.  It was a great week!

Carter is becoming one tough guy!

My sweet little guy is the first of my children to need stitches, and he did it twice in less than two weeks.  The first time was due to a drop attack that hit his eye at the breakfast table.  He just needed one little stitch just under his eye and he was amazing!  They didn't even need to numb him up.  Unfortunately the second set of stitches was a bit more traumatic.  While at the dentist's office waiting for his sisters to get their teeth cleaned he had a drop attack that caused him to fall against the wooden train table in the waiting room and sent his bottom teeth through his bottom lip.  After looking at it the dentist sent us to urgent care to have it stitched up (he only does stitches on the inside of the mouth) who then sent us to UVRMC emergency room so that he could be sedated for the procedure.  Once at the ER they decided he needed a CT to make sure he hadn't fractured any of this facial bones, and then he kept waking from the sedation.  It ended up being a LONG night.  Luckily no serious damage was done (he looked worse than it was) and he got to eat a lot of popsicles to help the swelling go down.  Poor Boy!  He is learning to be tough, though.

Alyssa's Birthday!

I can't believe my beautiful girl is 7!!!!  When did that happen?  We had a really great weekend celebrating our Aly-bug (and yes, I do mean weekend).  Here are some of the highlights:

She LOVES all things to do with space so we had a stargazing birthday party.  Her favorite planet is Uranus so she helped me make this great cake and "star chart"  for her friend birthday party.  She got a telescope for her birthday and had girlfriends over to decorate balloon planets, do space mad libs, and play night games with glowsticks, all the while doing a little (it was a cold night) stargazing.  It was a fun and unique party!
For her actual birthday we had her great grandparents come for dinner along with Mike and Mindy and their brood.  We had a turkey feast and then showered her with presents...it gets embarassing with the huge pile but what am I going to do?  She has a lot of adoring fans.
Lastly, she wanted to go to the planetarium so we did that a week later during spring break.  Overall an outstanding birthday for an out-of-this-world girl!  We sure do love her!

A few reprieves...

I've almost posted a couple of times recently but I've been nervous to share changes when I don't know if they will be permanent, and proven by the ups and downs of the last week.
Last week, Thursday through Saturday were really good days.  Carter had very few seizures and we were hopeful the medication was finally taking effect.  Then Sunday came and down he went, over and over.  The poor guy just couldn't seem to stay on his feet with the frequency of the drop attacks.  After 3 days of significant improvement it was a little hard to watch.
We were a little nervous for Chris to go to San Diego Monday but I knew it was important so I sent him anyway.  And then we were blessed.  Monday evening wasn't going so well and I was so glad to get Carter to bed so the seizures would stop.  And then he woke up Tuesday and was fine.  Not a single observable seizure all day!!!  What a gift!  Rather than get my hopes up I chose to just enjoy it, and enjoy it we did.  So I was pleasantly surprised to wake up this morning to a continuingly seizure free boy!  We had a great day, and after our daily chiropractic adjustment we spent a bunch of time at the park and outside in the beautiful weather.  We were 43 hours seizures free when he suddenly collapsed after his nap, hitting his chin on the window sill, and seizing for 30 seconds on the ground.  The streak was broken.  But you know what?  We had a great couple of days and we'll just look forward to more of those rather than dwell on the not-so-great days.

What's next?  We see the neurologist again on Friday and we'll see if they have any more ideas of a diagnosis/prognosis.  We have also started studying the ketogenic diet at the urging of the neurologist as some children with refractory epilepsy (meaning they are unable to control the seizures through medication) respond very well and can become seizure free on the diet.  Its extreme and requires complete commitment and it is very difficult to follow, but if the benefits outweigh the cost than it is something we should at least consider.
While we're counting blessings we are grateful that Christopher's trip to San Diego has been incredibly good professionally and we've had friends help us out while he's been gone.  Not to mention the wonderful Janie who helped me sort and de-junk the playroom while Carter was feeling well so he can now safely play down there.  And lastly, how gorgeous has the weather been?  Winter, we're done with you, welcome spring!

A very long day with the docs

Today was a very long day at PCMC.  Mikayla had an EMG which is a needle test that gauges her nerves and muscles.  She was a trooper! They didn't have to sedate her and then she just looked at her book and didn't make a sound as they were sticking electrodes and needles into her muscles-A-MAZE-ING!  The doctor was able to get a little more information and they have scheduled a muscle biopsy for  a couple of weeks from now.  We have hope that his new neuro-muscular specialist will be able to give us answers where so many have failed before, although we mostly want to make sure that there isn't anything degenerating going on.
Carter had his follow up with his neurologist who tweaked his medication and is still hopeful that we can control the seizures with medication.  It was working so nicely for almost a week there! (dang that stomach flu that set us back 2 weeks!)  He's still having several little seizures/drop attacks an hour and they get worse when he's tired but he loves wearing his helmet which helps set mom's mind at ease and mostly we just bribe him to stay on the couch and watch tv so he doesn't get hurt...  The doctor has a few ideas for a diagnosis but its too early to tell and I don't want to name them and have you all google them and get scared so you'll just have to wait to find out.  
For now know that we love you and appreciate your concern.

A slight setback

Carter had a slight set back this week.  On Wednesday he woke up and started throwing up and kept throwing up throughout the day.  Probably just a flu bug, but when you can't keep anything down that means you can't keep meds down either, which in Carter's case meant a return of the seizures.  He had been doing so well and and back to his happy, smiley, cheerful self since we got home form the hospital.  Long story short, we ended up in the ER all night getting him rehydrated and administering his meds through an IV.  This worked really well and calmed everything down, however he has had a bad reaction to one of the IV meds they gave him, dilantin, which has left his incredibly weak and floppy--its like having a 34 lb infant!  Its been really frustrating for him to not be able to hold his head up or feed himself, not to mention walking around and playing. So we're staying pretty close to home these days and hoping the dilantin will leave his system with no trace, fingers crossed.
Thanks for your continued love and support!

We finally got home last night!  Best Valentine's day ever!  You can have your romantic movies and elegant restaurants, we just wanted our family under one roof again.
We got news around noon that Carter was stable and there wasn't anything he needed done that couldn't be done at home so we opted not to stay another night and come home.  We still don't have an explainating for what is going on or its cause, and his wake-time brainwaves are still a concern.  But he hadn't had a clinical seizure in 24 hours and he was responding favorably to the medication.  Since he had been monitored the entire time they have PLENTY of EEG to review.  After fitting him with a seizure helmet and sending us home with half of the pharmacy we were finally able to step out in the fresh air, for Carter the first time he left that room in 8 days!

I can't say thank you enough to all of our wonderful family and friends for everything you have done and the prayers that you continue to send.  Its going to be a long road but it is comforting to know we won't have to walk it alone.

Cautious Optimism

Happy Valentine's day!  First let me say I have the best valentine in the world!  Everyone thinks they have the best spouse but I think recent events prove definitively that I'm the winner in that category.  So I wish we were together today but with you, every day is Valentine's day!  Love you SOOOOOOOOO much!
Now, onto the news about Carter.  He has now had 3 nights of normal sleep activity (yay!) but his wake-time brainwaves still don't make any sense.  Still, we've made great strides.  He has had little to no seizure activity since his grand mal yesterday and last night he started talking again.  He is once again bright eyed, although still very tired and a little spacey.  Since things don't seem as critical today his doctors are spending more time trying to find a source of the problem so he has a lot of labs ahead of him today, but hopefully the blood-draw will be the most traumatic event of the day.
There is a chance we will be going home, but we've heard that before.  So for now we are practicing cautious optimism.  We'll keep you updated as the day progresses.  Thanks for your continued prayers!