Shayla has peach fuzz!!

Yes, believe it, the hair really is growing back! If you look at her with the light you can see a soft glow of fuzz just above her skin. I think her hair follicles are a bit excited after such a long period of induced coma! There are tiny bumps all over Shayla's head now where I think those follicles are waking up and saying, "hey, there's something ready to sprout here." Anyway, it is fun to see. She has 'teeny-tiny' eyelashes and her brows are growning darker and longer.

Today she had a fitting for her 'permanent' obterator base form. It is shiny and silver. Now the dentist will ship it off to the obterator-makers and they will put the acrylic over it and attach 2 teeth where the two permanent molars were pulled as part of her tumor removal surgery. By Christmas she should have her two BACK teeth again.

Oh, one last thing, Shayla got to meet Glenn Beck today, too. We shook his hand and he signed his book for us (and a gazillion other people in one hour's time!) So now she can send him a signed copy of the calendar and they can both can say they know someone famous. :-)

p.s. I am told the calendars come out next week!

What to Feel?

Life is a journey...DIG IT!

Wow what a journey it has been. I can't believe it's finally over. I'm so glad and happy. I could cry! When i finished i had never felt so happy in my life, i felt like i had everything i could possibly want...besides a horse of course. I feel like my old self for the most part, my shoulder is sore from the surgery but hey i don't need lovenox in a couple of months.

Now everyone might be thinking "is she back in school"? OF COURSE I AM! when i can go that is and not feel like a freaking zombie the next day! No i haven't started seminary reagularly but i did go once. BIG mistake. i think i slept till noon the day after, from that and a full day of school. so that would be from 6:30-2:30. for those of you who don't know what seminary is, it is a class that my church teaches, about the Book of Mormon and the Bible.

i don't exactly like being behind in school so that makes it hard for me to work to catch up. especially when i have other things more important on my mind.

it's 11:00 so i got to go to bed loves to all

XOXO
shayla

P.S. wow that was the longest one i've ever posted i think

Shayla is PORT-LESS!

It is 11:23 am (MST) and Dr. Adrian Curnow just visited with me. Shayla's port is out and all is well! The surgery took about 1/2 an hour for removal. I know, I know, it is almost 2 1/2 hours after the surgery time I wrote about last night. Well, WE WERE HERE at 7:00 am! Dr. Curnow didn't come in to Shayla's pre-op room until almost 10:30, so he got a late start (and we were his first scheduled surgery for the day!). I was told he had an emergency in the PICU, so we will forgive the lateness.

This time was soooo much different! Shayla was chatting with the nurses, Child Life specialist and the anesthesiologist and laughing; happy. Today's surgery closes a very large chapter in Shayla's life; and I saw the file--no kidding, it is about 10 inches thick!!!!! Lucky for those of you reading this blog, you get the "condensed" version for easy reading! I think the blog is more interesting reading than a medical file anyway!

Building Bears and Visiting with Santa

Last night (Wednesday, December 3rd)Shayla was able to go to Build-A-Bear and create another loveable plush as a gift from the company's CEO to Make-A-Wish kids here in the Boise area. Very nice, classy lady! Thanks Toreen! Three of Shayla's younger sisters came along to be a part of the excitement and they were ANGELS! Of course, I threatened them with the wrath of Mom if they should complain. Besides, we did get to see the REAL Santa Claus and he gave us all a cookie and candy cane--Mrs. Claus must have made the cookies, they were soft and chewy oatmeal raisin!

As you look at the pictures you will see that I failed to take an all important picture of Shayla with her finished created companion! I will have to get that one tomorrow before surgery if she lets me. I can tell you it is a cute floppy-eared dog she named "Angel".

It was great to be able to visit with some of the parents we have become acquainted with because of the cancer, and see that there are many fighting this monster together! It just makes me sad to see so many little ones going through such a tough time! The sibs, too are having a rough time of it and it is sometimes harder when the cancer-stricken child is getting lots of gifts and attention and they get nothing.

I had explained to Chelen that she was not to ask for a stuffed toy of her own, that Shayla was getting this because of the hard time cancer has been for her, etc. Later, when Mariah started to whine, just a little, Chelen repeated to her what I had said earlier. She gets it. Maybe doesn't like the idea at all, but Chelen gets that cancer is far worse than not getting a stuffed Build-A-Bear. Mariah and Elloryn, on the other hand...well in Elloryn's case at least, let's just say that Two is a hard age already and being in the stuffed bear store and not allowed to take a bear home like all the other kids she sees, well that just is more injustice than one little girl can handle. Luckily she had her melt-down, throw herself down on the floor and wail episode as we were finishing up with the store clerk!

Lucky for Elloryn Santa was way down at the other end of the mall (at least a half-mile walk, no kidding!), he may know when we are 'bad or good', but he also knows when it's just too much to deal with anymore.

I remember many days like that. Too much to handle. No more today, Lord, please. I said that occasionally. Now I look back and realize I truly had it easy. How much did HE carry for me so I could breathe a little bit? I am afraid to find out when I meet Him at His throne. I am thankful He is willing to, and already has compensated for my weaknesses in spirit as well as body.

Shayla is getting 'unplugged'!

In less than 6 hours from now I will be taking Shayla to St. Luke's again for surgery. This time it is to be celebrated: The portacath is coming out!! Dr. Curnow's office called late this morning to tell us a cancellation came up, which made the way for Shayla's surgery to take place. Did we want the slot? DUH! Of course! I didn't even wait to ask Shayla when she got home from school or wake Jase to find out what he thought. This is a 'no brainer'. The sooner we get the port out, the sooner she can stop the twice daily belly injections of Lovenox to prevent more blood clots!

So, we check in at 7:00 a.m. and the surgery is scheduled for 9:00. We should be home around lunch time.

Calendars are ready for orders!

Okay, so you have been waiting on the edge of your seat for the calendars, and now you can finally get your TWELVE-MONTH calendar for only TEN DOLLARS!! What a deal, that is less than a dollar a month! PLUS, you get to have some great pictures of Shayla and the other Courageous Cancer Kidz hanging on your wall for a whole year. So how do you get one? Easy, just fill out the order form and send in your check to Roni Reed (her name is at the bottom of the order form along with necessary tax id and foundation info). Roni is the founder of the organization. If you want to order, or want to help spread the word, EMAIL ME! and I will forward the form needed.

I have been waiting for the photographer to get back to me so I could post the nice pictures on the blog, but I haven't heard back, so I copied Camille's idea and took digital pics of the photos on my monitor as it went through the slide show! That's why they are a bit on the blurry side. However, it gives you an idea of what you will see on the calendars. They are all black and white photos of the kids.

Thanks!

It's THANKSGIVING!!!

I don't think there will ever be another Thanksgiving like this year's! Last Friday we met with Dr. Chang to get the results of Shayla's post-treatment scans and were given the 'official word' that Shayla is CANCER FREE! How can there be anything more to be thankful for? But we are...

• Shayla's cancer-free status
• Jase's good-paying, providing job
• Carmen's good-paying job that is only 2 days a week
• insurance to cover Shayla's astronomical medical needs
• talents that bless our lives and others' lives too
• a home that is warm (even though it is never clutter-free or clean!:D
• children who are trying to do and be the best they can
• FAMILY
• God's blessings
• Grandma to do the baking this year
• a loving new home for our dog

I am so grateful God has seen fit to bless us with a riddance of Shayla's cancer. It has been a very intense 8 months. We have traveled through the lowest, darkest of valleys and been carried to the highest, exhilarating peak. The emotions we have experienced have been similar to the landscape of the journey. I am grateful we are where we are now. It is with a little bit of guilt that I am so happy to be done with cancer (at least with the 'in your face every day' part of it) because a friend has been dealing with her child's cancer for the past 14 months of her young 18 months of life and the end is much further down the road for them (10 years?!) you can read her blog here.

Another family friend (Kip Fife) asked our family to share what we have learned from the experiences of the past 8 months. I have re-learned that God is closer than we think, even if we don't believe we deserve his companionship. I re-learned that God hears the slightest of prayers, whether offered at the bedside of a hospitalized child or in a stairwell. I have learned my children are strong, capable young people. I have learned that crying isn't a sign of weakness. I have learned that God truly will only try us to the extent that we can bear...as long as we rely on His arm for strength.

What's next?

For the next 4 years Shayla will have repeat CT scans, bone scans, MRI and blood/urinalysis tests every three months. But that's all! Hopefully we can get her scheduled for port-removal surgery by early January. Once her port is out she will no longer need the twice-daily belly injections which have been necessary since May due to clotting around her port and peripherally into her right arm. She must return to the MSTI clinic monthly for breathing treaments of the pentamadine since she is allergic to the Septra/Bactrim medication. But that will end soon, too. Shayla is also being weaned off one med and will use up the last 3 of another to make her morning down to 1 pill a day for about 6 months.

Hair? Yep, she will get it back. Dr. Chang told her she could expect it to be 'combable' in about 6 months. So, by the time it starts to get hot around here again she may wish she didn't have hair!

Make-A-Wish trip: The plan is to go in May. We are all looking forward to the get-away. Shayla gets to be on a local radio station December 10th (at 8:00 am!) to talk with Paul J. about her wish and her dream to become an Equine vet. She got to visit the Idaho Equine hospital last week with her Make-A-Wish fundraising team from Capital High School. It was a surprise for her and she had a great time. The horses is what life is all about for her. I hope she will always have the fire of a dream to spur her on! (no pun intended, but apropros)

Looking back...I know I will be doing that alot. We still have a long way to go, but the road is so much more beautiful to look at from this vantage point! I hope to always be willing to look back and see the hand of God in our lives. I hope we all can.

Have a gratitude-filled Thanksgiving everyone!

Calendar Girl!

Shayla is officially a 'Courageous Cancer Kidz" calendar girl! A fellow cancer kidz' mom has recently started a foundation to assist families dealing with cancer as they go through the ordeal. The calendar is the first fundraiser and awareness campaign initiative for the organization and Shayla was asked if she would like to participate. Surprisingly she agreed. I am so thrilled because now we will have a nice picture of her instead of her hiding her face every time I try to take a photo of her! I will get the information posted as soon as I get it so you can order your own copy of the calendar. There are (unfortunately due to the reason for inclusion!) a few of our friends also on the calendar--but so cute and handsome! Little Olive is there, Kade is too, and Shayla gets to be "July", her b-day month. How awesome is that?!

I have discovered from Oive's blog that "I can take pre-orders from anyone interested in having one of these calendars. It features ten kids who are currently battling cancer, and sadly two girls who have passed on this year" (thanks for the info Camille!). I believe the photos are all in Black and White. Wait 'til you see the pictures.They are wonderful! We had a hard time narrowing down our choices for the calendar.

I have more fun stuff to post on the blog...you'll have to wait until I get a bit of sleep!

A Time to Laugh and a Time to....

C-E-L-E-B-R-A-T-E!!!

We are having a PARTY to celebrate the end of Shayla's chemo, the riddance of her cancer and all of you, the people who have been cheering us on these past 8 months! So, mark down next Tuesday, November 18th from 7:30-9:00 p.m. We are going to celebrate at our local church so there is enough room. So come to 3555 S. Cole Road, The Church of Jesus Christ of Latter-day Saints. No gifts please! You have already been the greatest gifts we could ever have hoped for during all of this. You can bring yourself and a munchie to share if you'd like.

Come see the sprouting of new eyebrows and eyelashes and the new 'fuzz' she is sporting on top of her head! Yes, it does seem to be coming in blonde up there, much to her chagrin!

Today we had another trip to the MSTI clinic to check on Shayla's blood counts and platelets and neutrophils--all is good and getting stronger. She was feeling well enough to venture back to the peds unit to say hi to the nurses on shift today. Many of her favorites were there so it made it extra fun for her to show them her progress and growing hair.

We also saw another mom (Richele) there whose son is now on treatment 7 of 14--half way there--for Ewing's. She mentioned to Shayla that there was a definite sparkle in her eyes now. It must be the change in scenery, huh? She also said she saw it in my eyes too.

Perhaps the stress of the times is now starting to dissipate. The reality of the easier road we are now traveling is sinking in a bit slowly, not even a 'slow drip', but more like a gradual soaking in. Whenever I allow myself to slow down a bit and truly think of where we started, how far we have come, and what that road was like along the way, I get too emotional. Sure, it's only been two weeks since Shayla's treatment finished, but I hope to some degree I will never lose that sense of emotion. We have been able to endure so much because of the love surrounding us and the faith we have in Heavenly Father. I am truly grateful for His love and tenderness. He alone knows how dark some of our days have been, and how many of those dark days Shayla endured. But now we have blue skies again, with big, puffy, fluffy white clouds (I love those kinds of skies!, all blue is a bit boring for me). Eight months ago we looked forward to the journey with fear, anxiety and hope. Now we can look back and see how quickly those moments have gone by!

A Time to LIVE!

Reading the signs

Yesterday Shayla was EXHAUSTED and she was prepared today to need a blood transfusion at her clinic appointment. She even took her backpack with all her homework in it! Sure enough, a little blood is what she needed. She is there now with Jase passing the time doing homework (I hope), playing the computer (most likely), and probably playing a new game she discovered there called Blokus. Have you heard of it? Quite a great strategy game for 4 players.

That's this afternoon's news. She should be feeling more 'pink and perky' again soon!

Shayla's Halloween2

Sinking in...

Not long ago we were digesting the reality that cancer had invaded our relatively peaceful existence. Now we are slowly allowing ourselves to feel the relief that the hard part is over.

Yesterday Shayla came to me, arms spread wide and we hugged. She said, "I'm just so happy it's over!" Yes, there were tears. She is starting to let the emotions she had bottled up for seven months start to come out. With each tear of joy or relief she sheds, I believe it will flush out those dark moments we've had.

Yes Shayla, the hard part is over.

It was a week ago today that I drove the same road, rode the same elevator and walked the same halls back to the peds (pronounced 'peeds') annex and was given a brief yet strong epiphany that I had not ever walked that path alone during the past seven months. It was profoundly emotional for me as I walked past the Ronald McDonald House children's play room, and then around the first nurses' station. The realization hit me: it won't be long and our feet will not need to walk these halls as chemotherapy patient/parents/family. God has carried us through!
October 27-31:
This was the Best Week Ever! Shayla endured each day with a smile and was actually 'chatty' with the nurses. She was so at ease that we were able to leave her sleep alone at the hospital and return to our own bed for the night. Let me tell you what, hospitals could do much better in their choice of sleeping accommodations for the parents of patients! It was quite comical to walk into the hospital with our feather body pillow to use as an extra mattress. It helped a little, but not much.

She's finished chemo. I still can't believe it. The strange thing is, being on 'this side' of her treatment and looking back, it seems like the past 7 months have really gone by quickly. However, standing at the starting line it sure looked like an ominous task, and almost insurmountable! The days that were bad were really bad, but even those were few compared to other patients' we have met along the way.

Speaking of others we have met; there are too many! Too many children being diagnosed with cancer of any kind, but especially right here in our valley. Why? Someone should really investigate it... Nonetheless, here we are. We have had the opportunity to share a burden and hopefully lift the weight of it just a little because we had a shoulder to lend (you know, the one we hadn't already cried on ourselves!). There is an awesome strength on the oncology annex unit of the pediatrics department: families helping families.

Nothing but good weather ahead!
There are still scans and regular check-ups; the frequency of which I still don't know for sure, but these will be 'cake'. No need to check in to the hospital for a week at a time. No need to arrange care for the rest of the family while Jase or I are with Shayla. We can almost get back to being our (ab)normal selves again!

Thanks Giving:
Too many. If I try to list the names of all the people who have lifted us and helped during this ordeal, I am sure I will leave someone out. I can't do that to you, especially, so please know that our prayers of gratitude include each of you. Thank You! As soon as Shayla's platelet and neutrophil counts are high and strong again we are going to have a great celebration to which everyone is invited. Be watching, it won't be far off....

My Choice!

Hi everyone sorry i haven't blogged my Make A Wish Choice yet i just don't like to blog anything. Well my choice is to go to a Dude Ranch in TX and the Sea World in San Antonio, TX. i will probably be goin in May. i will spend a week or so at the Dude Ranch and i don't know how long at Sea World.

Here are the links to both of them:

http://www.ranchocortez.com/

http://www.seaworld.com/sanantonio/default.aspx

i can't wait and sorry for taking so long!!!!!

Round 13 is UNDERWAY!

Okay, so Shayla was able to come home last Saturday night about 7:45p.m. Dr. Chang was surprised by how quickly her neutrophils came up (no Neupogen shots needed Saturday or yesterday), but we know the power of God strengthened her body to again be able to move 'forward as scheduled' on this, the one before the last, chemo session!

This afternoon her platelet count was a strong 8 point something, so she is currently getting the chemo med at St. Luke's. It was a late start due to hydration (or lack of peeing actually) issues, but that is all resolved now.

Shayla has decided on a wish she would like to be granted through the Make-A-Wish Foundation. I am hoping she will post about it soon.

Today she spent time working on school assignments and got much done-way to go Shayla! I know she hates me nagging her about getting the work done, but she will be (hopefully) glad when the year is all done and she doesn't have to take summer school or retake classes next year in High School!

Now that the weather has turned cold Shayla is starting to wear her hats more, even around the house. It may not be long before she dons her beautiful wig Morgan and her family bought for her, but who knows?

It's been a good day. Shayla has triumphed again over the doctors' doubts that she would be physically strong enough to stay on schedule. Since faith can move mountains it most certainly can produce platelets!

An extra night 'out'

Shayla is in the hospital today. It is 2:21 a.m. and I have just returned home to try to get some sleep before work tomorrow morning. Jase is with Shayla now, but I will get back to that....

At the regular clinic visit yesterday, now, her blood count was low (Hematocrit was 7.9) and she was neutropenic. She also had a low fever of 99.2. Not too problematic for you or I, but for one whose immune system is suppressed, it is an early warning sign...

The Number Rises
As the day went on, Shayla dealt with a persistent headache and lack of appetite. By 8 p.m. she had a fever of 100.4, just barely high enough to warrant concern. She was chilled and shivering. A warm bath and tucking in the covers of her many quilts on her bed, she tried to sleep. However, by 9:45 she was feeling worse. The thermometer told us to get moving. At that time, her temperature ready 103.4! Two Tylenol and a phone call to the on-call clinic and we were on our way to the ER per Dr. Hansen's instructions.

The ER (Or Petrie dish...)
We arrived at the ER about 10:15, give or take a few minutes, and waited to be moved up to the Pediatrics Annex where Shayla is usually treated for her chemo. That would have been too simple! Instead, we waited in an ER suite for the pharmacy to get the antibiotics ready and start her on fluids. At midnight I asked if we could be moved upstairs since she was going to be admitted anyway, and they were already on the same track, so no convincing was necessary. Now, in all fairness, after having discussed the matter with Dr. Hansen I understand why he sent us to the ER and not directly to the annex: Shayla's fever was pretty high for a neutropenic patient, lots of 'red flags', so if she was going to 'crash', it was better that she be in the ER where they have everything at their grasp for quick response. The odd thing was (okay, not odd since she received a priesthood blessing earlier), that when we got to the ER, Shayla had no fever at all! In 20 minutes time, the fever had come down to normal. That said, it was not going to be enough for the docs to let us leave, and frankly, Shayla wasn't in any condition to put up a fuss, she was already pretty wiped out. I said Petrie Dish in the title of the paragraph...it's a little unsettling when in the rooms all around you can hear little children coughing, spewing who-knows-what kinds of germs all over the place!

Fever Free for 36 hours and she can leave the hospital.
That's the deal. That, and the blood culture has to come back negative. In the meantime, Shayla will be getting another blood transfusion because her platelets are very low-probably a cause of the headaches and insomnia the past few days! She actually could have received the transfusion this morning at clinic, but she wasn't going to have anything to do with staying there up to 6 hours when she didn't need to. Okay, maybe she needed to. She has learned her lesson. Should the circumstance present itself again, I think Shayla will choose the transfusion early rather than wait until later.

What hurts?
As I was getting Shayla settled in her room on the peds annex, she complained of a pain in her thumb, yep, the thumb. She told me it hurts on the pad of the thumb, an achy, all-over kind of pain. Looking at it, there is a little darker spot in the center of where she indicates the pain is (the fingerprint part), but nothing that 'jumps out' at you at first glance. No idea what it is and the doc said we should keep an eye on it. Who knows?!

A Wish is Forming...
Shayla has not made a definite determination yet, but the options are getting narrowed down a bit. We are looking into a Dude Ranch resort near Sea World so she can ride horses and play with the dolphins. We will keep all posted.

A Song of Love
One last thing before I hit the sack. Songs of Love have produced a song just for Shayla! It makes her smile every time she listens to it. I will post the link so you can hear and enjoy it too.

Thank you all for your prayers! Thank you especially to Tom M. and Andy F. who came when we needed them to administer to Shayla. And finally, I thank Jase for determining just how much I needed him to be with us on this and got off work early to be with Shayla so one of us would be here for the rest of the kids in the morning. I love you Jase, more deeply every minute we walk together.

Happiness...

Someone once told Shayla that to truly be happy she needed something special to love. Well, that thing for Shayla is a horse. A real, hay eating, manure depositing, air-breathing horse.

Tomorrow we have a special opportunity to have a couple of wish-granters from Make-A-Wish Foundation come to our home to talk with Shayla about a special, once-in-a-lifetime wish she would like to have granted to her because of her battle with cancer. It is hard right now to look forward to this meeting because I think it will be bittersweet for Shayla. She only wants to have a horse of her own, yet Jase and I have told her that is not possible at this point in our lives. To have a horse means more responsibility than wanting something really badly. Not to mention the complete lack of means to maintain a horse on a daily basis for any length of time. I even 'forewarned' the gift granting mom who will be coming that I expect this is what Shayla will want, but that we cannot agree to such a gift because of the continued financial and spacial needs a horse presents. Shayla has it in her heart that she must have a horse of her own.

We have even tried to create alternate situations to allow her to be around horses and ride and take lessons--all on others' animals. She has turned them all down. It breaks my heart because after all we have tried to do, it isn't enough.

"Adam fell that men might be and men are that they might have joy." Find the JOY Shayla, find the joy in what you do have...

We really are nearly done!

Jase called this morning late, around 11:00 or so, to let me know Shayla's room number for this round of chemo. Then he told me they would be home sometime tomorrow! HUH??? Well, Shayla has finished one of the drugs used in her treatment protocol for the 3-day treatments, so she doesn't need to get it anymore. Her 3-day rounds will now be 2-day/1 night rounds! The 5-day regimen remains unchanged (darn!), but we have been given a great blessing of nearing the end of the chemotherapy, AND WE'LL TAKE IT! She'll be done with Round 11 sometime between 3 and 4 am tomorrow. And no, this time no one will be discharging at that dark, early hour.

I also received an email from Make-A-Wish, Shayla has been assigned to a Mother-Daughter team of wish coordinators, so we should be hearing from them soon. Shayla has been thinking long and hard about what she would like to do for her wish. We'll see what she finally comes up with.

Determination & Faith

Shayla will be starting Round 11 tomorrow (that really brings us to the low countdown!). However, Dr. Chang was skeptical that it would be happening on schedule. Let me back up to last Thursday's lab visit for the routine blood test....

Shayla's counts were quite low on Thursday. Low enough to be 'neutropenic'. When I asked about the schedule for Monday's lab and possible admit for chemo, the nurse couldn't find orders in the chart. So she asked Dr. Chang. Well, Dr. Chang was at the desk so Shayla and I were privy to the conversation between the nurse and Dr. Chang. She was certain that Shayla would not be starting chemotherapy on Monday (September 15th) due to her low blood counts. Shayla asked, "but what if my counts are high enough by Monday?" Dr. Chang's response was "they won't be", and even if they were, Shayla wouldn't be off her Neupogen shot (promotes bone marrow production) long enough to start chemo on Monday. Maybe Tuesday or Wednesday. Well, Shayla wasn't going to take it so easily, so she said, "but what if my counts are high enough by the weekend and I don't need the Neupogen on Sunday??"

I think by this time Dr. Chang realizes that Shayla is really in control of more than most patients. She won't take no for a final answer if there are possibilities to consider the 'yes' or 'maybe' options. So, as a compromise, Dr. Chang told Shayla to continue her Neupogen until Saturday, go to the hospital for a blood test, and then call the 'on call' doc to get results and find out if Neupogen can be stopped.

Following Orders:
On Saturday I took Shayla to St. Alphonsus RMC to have the blood drawn. Guess what? The phlebotomists are not nurses, so they are not permitted to draw anything out of nor put anything into Shayla's port access line! The tech put a turniquette around Shayla's arm to find the vein and that led to a tearful situation for her. After some tense moments for Shayla, and some finagelling by the tech, a nurse from the oncology floor was summoned to Shayla's rescue. The blood was drawn via her port and we were on our way. MENTAL NOTE: No more blood draws to be scheduled at St. Al's unless Dad goes with to draw it! By the way, I did write a note of commendation for the tech who did his best to find a solution to the dilemma we faced!

By early afternoon I called Dr. Camilo (on call this weekend, much to Shayla's chagrin) for the results. He had to call to get the numbers and call me back. When he did the news was (as expected) good. Shayla's H&H (Hemaglobin and Hematocrit levels) are good and her neutrophils are at 800-above where they needed to be by 50 in order to continue with chemo as scheduled.
The Moral to this story? Don't underestimate the power of a determined spirit full of faith. Or in other words: Don't mess with Shayla! She knows what she wants and will work to get it!

There you have it. Shayla and Jase will probably head into MSTI early in the morning (will have to call at 8:00 for the appointment time). We hope and pray she will be able to start her chemo soon. The sooner it starts, the sooner they get to come home and tuck one more under her belt of victory!

During her last chemo session we commissioned a dear friend, Amy Fife, to paint a mural on Shayla's bedroom wall. It is her favorite picture, a black horse running on the beach. It is a beautiful photo (you can Google it online and find it under "black horse running on beach"). Well, Amy did such a fantastic job! Take a look at the pictures to the right of the blog entries to see how it came together. Shayla was very surprised to find her room a bit rearranged and different when she came home!

How can we experience the blessings, big and small, we receive every day without acknowledging that Heavenly Father lives and knows us each personally and wants to bless us? There are so many people who have been God's instruments in making the burden lighter, easier to bear, or maybe just walked with us a few steps of the journey to let us know we aren't alone. Thank you to each of you for your prayers, your meals, your gifts for 'something fun' for the family. Our words are unsufficient to express how much it all helps!
Thank you. The French Family

Uneventful Round #10

Shayla's 10th of 14 chemo sessions is going along fine. She was admitted for this session on Tuesday. That kinda through off our schedule a bit since we were expecting to come in on Monday. But guess what? "routine"chemo sessions aren't started on holidays (Monday was Labor Day). So, were are here through Saturday morning.

Today Shayla will be given a total of 2 units of whole blood because her Hemaglobin and Hematocrit levels were low (7.4). She's had one earlier today and will get the second later tonight. That should help perk her up a bit. She has been pretty tired this time around, and no wonder!

Homework, Homework!

I think Mom staying with Shayla is a two-edged sword for Shayla. I make her do her schoolwork. She worked on Geometry today and tomorrow the plan is to do more of the same as well as the science. We still have scripture study to do yet tonight before bed.

I've said it before and Iwill say it again, we are truily blessed. Shayla is making it through this trial with relative few setbacks. We are grateful!

Getting Caught Up, Again!

Wow, it is amazing how long it has been since I have posted (or even Shayla for that matter!). Let's get caught up, shall we?

First of all, Shayla is doing blessedly well! School started last Monday and she has attended 2 1/2 of the 4 1/2 days last week. She is still getting IV fluids at home and although toting a liter of IV fluids around the house with her gets to be bothersome at times, the extra fluids have been a good thing for her.

I left everyone hanging with the last posting to the blog dated August 14th, and I am so sorry! Shayla was able to come home from the hospital on Friday evening rather than Saturday. Let me tell you about it...

On Wednesday, August 13th, Shayla was not feeling that great. She took her temperature at 6:00 p.m. and it was high, as noted in the last blog posting. So, after consulting with Dr. Chang we headed to the hospital to get some IV fluids and antibiotics and to get a blood test done. We were mentally not planning on needing to stay in the hospital and that was probably our biggest problem--not planning on it. Because when the blood draw was done and the initial tests came back, Shayla was neutropenic, and as such, the high fever was a Big Red Flag.

Marni Allen (Nurse Practitioner at the MSTI clinic) was on call that night, so she was the one we saw in the hospital. Marni had the misfortune of being the one to tell us that Shayla would need to be in the hospital for a little while to make sure the fever was not a symptom of something more serious. When I asked how long we would need to be there she said it "could take 3-5 days" before we got the culture results back on the blood test, and yes, she would need to stay that long. Ugh!! NOT the news we wanted to hear. Once Shayla heard that she checked out. She was SOOO mad at the whole world, me included, for doing this to her. She refused to talk to anyone and when the sandwhich came that she ordered upon admittance, she refused to eat it. It was the two things she could control (her speaking and eating) as her world spun around her.

This was not a fun time. Jase was at work, Jarin had to be responsible for his younger siblings at home for the night and I was there with Shayla and she refused to talk, to cooperate, to communicate. This was a night of many tears. The bright spot was when Jase spoke with Shayla on the phone. He was able to get her smiling and talking again. He was our Hero, again!

Jase was given leave at work at 3:00 a.m. and he came to the hospital to be with Shayla. He stayed with Shayla until they came home Friday evening. Home is definitely a better place for Shayla mentally! Then again, I don't know many people who would rather be in the hospital instead of their own bed.

Shayla shared with me how hard it was for her in the hospital on Thursday and Friday, just wanting so badly to come home. She said it was as bad as it was when she 'hit the wall' when I was with her last month. I asked what Dad did when that happened and she smiled really big and said "He brought me home!" That was a bittersweet pill for me to swallow. I know she didn't mean it to be a spear, but it felt that way. I brought her home at the very moment we could (it was 1:00 a.m.), but could not do better than that. Dad brought her home a day earlier than we were originally told she would be able to leave. Shayla knows now that Dad didn't say or do anything any differently than I did, but there were at least a couple of differences. One: Dad was able to give Shayla a Priesthood blessing to speed up her recovery, and Two: she wasn't in the hospital for strictly-timed chemotherapy this time.

Her early discharge didn't come easily, however. She was told she would be able to come home on IV antibiotics Friday morning if all went well and the labs looked good, but Friday morning she got the news that she had spiked a fever sometime around midnight Thursday, so would have to wait at least 12 hours before she could leave. A trial of faith for her, one she was able to be patient for. The rolled in at home around 8:30 p.m. on Friday. That gave Shayla two full days before she would be back in the hospital for the next round of Chemotherapy.

August 18, 2008 Chemotherapy Round #9

This session seemed to go smoothly. Thankfully it was a short one, three days. After the hospital stay last week, a 5-day treatment would have been like salt to a wound! Jase spent the whole session with Shayla at the hospital then came home Wednesday the 20th and went to bed to get a nap before work. I stayed with Shayla until we discharged at 4:15 p.m. She was home, changed and at the church for a youth boating trip at 5:00. She got out on the knee board and showed a couple of her church friends that even chemo can't keep a girl down long!

In Retrospect

Jase being able to stay with Shayla the first days of chemo has changed the amount of stress I feel and I am so grateful he is able to go and be with her for the first half of the long stretches and most of the short. I need that time here at home with the rest of the kids to just try to get on top of the chaos which is our home. It's a diversion, yes, but Shayla is still getting the individual attention she needs at the hospital and I get a break from the 24/7 nursing care that has been my position since the diagnosis. We are so blessed to have the flexibility to trade off like we do. At first I felt guilty staying home while Jase went with Shayla, but now I see it as an opportunity to try to do what I couldn't do before and for Shayla and Jase to deepen their bond . That is another reason I haven't posted on the blog recently--I have not been secluded from the world in a hospital room for days on end with little to do, I have been busy with the rest of our lives. Amazing that the rest of the world keeps on going when your own world seems to be spinning topsy-turvy!

School Starting!

After discharging from the hospital we did the school shopping for everyone that we had put off up until that point. School started August 25th, just last Monday. Shayla attended the first day (it was a half day), and then Wednesday and Friday all day. She is such a dynamo! I mean, not all the time, but she is determined to be with her friends, so all the more power to her! It may be every other day for awhile, but she will also be attending school with the hospital teacher 2 days a week as well as receive homebound instruction for a couple of hours each week. This may be a blessing to her too. She has a pretty demanding academic load this year, and wants to make it even more challenging by moving to the accelerated U.S. History class. We will see if that messes with her current schedule too much.

A New Acquaintance

At a recent lab visit Shayla met another teen newly diagnosed with an inoperable brain tumor. I had the chance to meet her and her mother last week at another lab visit. Hailey is her name. Another beautiful young lady facing scary times ahead. I told her and her mom not to give up hope. There are miracles that happen at the MSTI clinic and God had His hand in them all. Hailey just started chemotherapy which they hope will shrink the tumor (in the center of her optic nerve causing 50% blindness in her left eye right now). So friends, keep Hailey in your prayers, too. There are too many children with cancer. Way too many! Now we know two Sarahs, Hailey, little Olive (not even 2!), and so many more right here, let alone in our country and the world!

Playing with Meds

I know that sounds bad, but sometimes it feels like an experiment, and that is really what it is when it comes to medicine, right? They are "practicing" medicine. Shayla had the option of taking one of her daily meds (the Neupogen shots or GCSF) through her port since she is accessed for daily IV fluids. So, she opted for it. Wouldn't you if it meant one less poke per day?! Well let me tell ya, the quick shot in the arm is better! It takes 15 minutes to administer the Neupogen in the IV. Once you get all the syringes in order and draw out the right amount of med and mix with another syringe you have to make sure you give the actual medicine over a 'slow push' of 3 minutes so it doesn't overwhelm the bloodstream! There is a saline flush done first and during that syringe you do a ckeck for blood return to make sure the line is open--no problem. Then you give a D5W (5%Dextrose and Water solution), then you mix some D5W with the .78 ml of Neupogen and administer that, then you do another dose of the D5W, then a saline flush, then a Heparin flush to keep the line clear! Let's just say that alone was reason enough to bag the idea of the IV administration. However, we found that Shayla actually got nauseated after giving the medication in her IV and it lasted all day long. I concluded [with my vast training and expertise ;-D ] that the IV stuff was too strong getting into her blood stream so quickly via IV compared to the slow absorption with the shot in the arm. So, we are back to shots in the arm. It makes getting ready for school a little easier, too.

Another med was restarted this weekend (the Bactrim). It was halted in May due to a possible reaction to it--remember the hand pain and redness which led to peeling? Well, Dr. Hansen noticed she had not restarted it, so wanted her to resume. She took one dose yesterday (oops, we forgot the a.m. dose!) and within an hour Shayla's hands (palms) were red and painful. Guess what? No more Bactrim! Now she will have to use a medication that is inhaled in a nebulizer over about an hour's time. Thankfully this is only once a month. And hey, she has ONLY TWO MONTHS OF TREATMENT TO GO!

It is interesting how much time Shayla's treatments take. Her chemo is not a "quick" )relatively speaking) 4-6 hours in the clinic, they are 72-120 hours in the hospital. Rather than being able to take an easy pill 2 days a week, she now needs to breathe the stuff in slowly over an hour's time once a month. Perhaps Heavenly Father wants Shayla to learn patience. Heaven knows I have had to do so, again!

So here we are, all caught up for the moment. Shayla will be going back in on Tuesday for her next chemotherapy treatment. This is a 5-day routine. Hopefully school work, study and a few diversions will help the time go by quickly. This will start a new dynamic for us as we juggle work schedules and the needs of the rest of the family.

Not a day goes by that I don't feel grateful for all the angels Heavenly Father has brought to our family. We are truly blessed beyond measure. There is so much to be thankful for. Today, right now, I am most grateful for a daughter free of cancer. She smiles more now.

Minor setback

Shayla is in the hospital for neutropenia--suppressed immune system. She started with a fever of 101.5 degrees farenheit yesterday evening, so we had to go to the hospital. To put it simply: she was MAD! It's just not fair are her words for this and she is right. I tried to help her see that I agree with her, but she had to stay in the hospital until her white blood count came up to safer levels (yesterday it was 0.4, or 400. 'Ideal' white blood counts are between 500 and 1000 (or.5-1.0)--a little compromised, wouldn't you say?). However unfair this trial may be, she has been blessed with so much throughout that this (expected) setback is not a big deal in the grand scheme of it all.

She must stay in the hospital until at least Saturday. If her counts start to come up and there are no other problems, Dr. Chang said she will discharge her with antibiotics to get at home. We think this infection came as a result of some graft site debridement Dr. Beck did in her office yesterday morning. The timing was not good because Shayla's immune system was probably at it lowest. Now I know....wish I had known before we went to Dr. Beck's office!


Shayla's Dad is her knight in shining armor (and mine!). He was the one that got her talking and smiling and eating again last night--and that was over the phone from work! I am so glad he is there with her now. Shayla needs her dad and I am glad he can be there for her. His work cancelled his shift hours for the rest of the weekend so he could be with her and me here at home. Although it was a crazy night last night, we made it through. We are so blessed in so many ways!

1. After 8 chemotherapy sessions and surgery, this is the FIRST time Shayla needs to be hospitalized for neutropenia
2. Jase has a wonderful job, boss and co-workers who are very supportive of whatever he needs to do for Shayla and our family right now--God bless them all!
3. Everyone else here at home is healthy
4. Neighbors and friends are close by to rally around and help us--Thank YOU!
5. God knows our needs and is helping us make it through!

YES!!!!

A quick update to let everyone know that we met with Dr. Dorn this morning. His opinion and recommendation is NO RADIATION of any kind is warranted! We are tearfully thrilled! I told Dr. Dorn that I like him better now. ;-)

Will add more later...

We've made it through another round

This time Jase spent the first 2 1/2 days with Shayla (Monday through Wednesday noon) and I spent the last 2 1/2 days (Wed-Fri) at the hospital with her.

Shayla and I have discovered that weekday television is boring! There is nothing interesting on during the week, just a bunch of mind-mushing (a new word I made myself!) programs with no value--entertainment or otherwise!

The downhill side of chemo sure looks better than the up. Shayla only has 6 more sessions to go now--hurray! She continues to handle the medications well and is doing okay with actually needing to be in the hospital for her chemo. However, she is becoming more outspoken about her desire to leave the hospital when the chemo is done. This time she finished at 9:00 am on Friday. She was ready to go, but the doctor doing rounds (Dr. Camilo) the day before wrote discharge orders for 12 hours after the last chemo for fluids, which was 12:00 midnight Thursday. So, we were going to have to stay until noon. That really didn't make sense since Shayla now goes home with her port accessed so she can get IV fluids at home between chemo sessions. It took some discussion with the nurse, and she paging Dr. Camilo to reiterate our desire to be discharged, but he agreed to let us go early when he realized we didn't need to stay hospitalized for IV fluids since she would be getting them at home too. We were out of there by 9:50am. We have always known Shayla was headstrong. Now we see how that character trait is actually helping her make it through this trial!

I must say we are being well taken care of by our church family here! There have been wonderful meals brought in every night Shayla is in the hospital for chemo and there have even been a few who have been willing and able to spend the night at our home to stay with the rest of the kids on the nights Jase is working and I am with Shayla. We are blessed greatly by a Father in Heaven who knows our needs and puts people in our lives who can fill them. I hope I can keep my eyes open to 'pay it forward' to others in their time of need!

There has been a noticeable improvement to Shayla's attitude. She is more like herself these days and I think the new medication she is on is helping with that. It is so nice to see her smile and hear her banter back and forth with her siblings in a friendly way again. She rode her bike about 3 miles to a friend's today, and then rode back when they were done 'hanging out'. The exercise does her good!

Monday we meet with Dr. Dorn, the Radiology Oncologist Dr. Chang wants us to see. I am still anxious about hearing what his opinion may be regarding Shayla's case and radiation. There are a few questions most prominent in our minds (or at least mine) like: 1) What will they radiate if that is determined needful (the tumor is gone)? 2) What are the risks if we don't radiate? What if we do? Tonight I am wondering if Dr. Chang has already asked those questions of Dr. Dorn, but wants him to tell us what he has already told her. Dr. Camilo suggested that all of the information we get, even in a second opinion, will be just that, "opinion". That is because of the rarity of Shayla's case. There just isn't enough experience out there to say definitively one way or the other which is the best way to go.

I pray for peace, I pray we have His direction in this matter. We know God has the answers, and we can learn them too as we need to know. This we need to know.

Trek Completion

Hi everyone i'm back. Today i walked the majority of the day which was 4 miles 6 miles altogether. i will blog about the rest later i am very tired and hungry and as soon as i can i'm goning to bed.


so Goodnight

~shayla

Catching Up

I am glad Shayla posted. Things just keep going at their non-stop pace and I find it hard to keep up much of the time!

Let me first tell you how last week went with all her appointments, then fill you in on 'present day' Shayla stuff.
Lab Appointment, Visit with Dr. Chang:
Originally the Nurse Practitioner, Marni, came in to do the office visit part of the appointment, but I had to politely request Dr. Chang since we needed to discuss with her Shayla's Trek adventure. Thankfully, Marni got Dr. Chang to come in. (I told the nurses when we scheduled the appt. that we needed to speak to her Dr. specifically about the trek, but I guess schedules have to be juggled around there with so many children being seen here in Idaho). Anyway, Shayla's labs came back great.Dr. Chang was actually surprised at how high her neutrophil level was last Thursday. We told her of Shayla's trek plans and asked that the chemo scheduled to start tomorrow (7/31) be postponed until she return. I was so ready to go to battle on this and Dr. Chang said Okay! So, Shayla has been upbeat for the past week just anticipating the journey.

Dr. Chang and I had a discussion about Shayla's needs emotionally and we 3 (Jase included) decided to add another medication to her daily regimen to try to help the chemo be more bearable and edurable. It will be short-term, temporary, and low dose.

Dr. Chang also discussed her desire to have Jase, Shayla and I meet with Dr. Dorn (radiology oncologist) to consult with him regarding possible radiation treatment (remember Boston?). I asked why since we got the great news that the margins were clear from the tumor removal surgery. As Dr. Chang explained her reasons I started to get a knot in my stomach. Just the thought of needing more invasive (and damaging) treatment for my 'little girl' (sorry Shayla, you'll always be one of my 'little girls') makes me ill. Fear of the unknown I guess.
Anyway, everyone reading this probably wants to know the 'why' too. Right?

Dr. Chang explained that the 'typical' treatment for Ewing's Sarcoma calls for centimeters of clear margins, not millimeters that Dr. Beck was able to get so skillfully. With typical Ewing's cases (arms, legs, ribs), centimeters of clear margins can easily be taken when the tumor is removed by resecting a large part of the bone involved. However, since Shayla's case is in the 2% of rare cases because of the location (in her sinus), centimeters of margin just don't exist. Therefore, in comes Dr. Dorn. Dr. Chang is not a radiologist and wants an expert in that area to answer the questions like "what if radiation is done, what if it isn't, what are the risks of doing it versus the risks of not doing it, are the margins Dr. Beck got sufficient to provide a good level of confidence that there will not be a recurrence? And all those other questions. Dr. Dorn's experience is 'over 20 years', but dealing with Rhabdomyosarcoma of the face, not Ewing's. However, if you look back at the early entries in this blog, I think we mentioned that type of cancer as one Dr. Chang was originally concerned about. Apparently they are similar. I don't know if that means treatment is similar. A question to ask, I know.

I can say that Dr. Chang feels confident (I can't remember now if she said 'very') that radiation will not be needed, but wants to make sure we ask the expert. Her slight hesitancy is in the fact that there are so few cases of Ewing's like Shayla's that there is nothing to compare to, no proven protocol. She doesn't want to have to do the radiation because of the long-term, permanent damage it would cause to her sight.

So, we (the French family) walk by faith and pray that this little bump is just that, a bump which can easily be stepped around or over without much 'to do'. If Dr. Dorn feels we should go ahead with radiation, we will seek a second opinion from someone (a radiation oncologist) who has treated Ewing's in the face. Then the search for the proverbial needle in a haystack will begin. We meet with Dr. Dorn on Monday, August 11th.

Physical Therapy: Dr. Morris seems like a nice enough guy. Shayla's first PT session with him was fair. She really didn't see a need to even be there, so she was reluctant to participate in the appointment (by actually responding to Dr. Morris' questions, or offer information about her current mobility in her jaw, etc.). Her mouth is limited to an opening of about 31 cm. Normal for her age is 40-50, but closer to 50 according to Dr. M. That she was so limited surprised her. Dr. did some stretching of her jaw muscles and she had heat therapy (electrodes were attached to her cheek in 4 places) done too. She was shown a stretching exercise to do of 5 repetitions, 5 seconds each, twice a day....she didn't even open the bag to the heat pack Dr. M. gave her to warm up the muscles before the stretching, so guess how many times she did the therapy before our second trip (44 miles round trip) yesterday? None. hmph...grr... I have to remember that she is old enough to understand what she needs to do and give her the power to control what aspects she can in her treatment and cure, so this one is all hers. I just wish she would try a few stretches so we wouldn't have to commute in the road construction every week. Oh well, she is a teen and wants to do things her way, right?

Opthalmologist: Visual Field test was 'perfect'. No need to elaborate there. I guess we go back in 6 months for a check-up, depending on what Dr. Dorn says and what happens regarding radiation.

Shayla today: First and foremost, I believe Shayla is happy today. I imagine she is exhasuted too! She left with her dad and brother and 148 other youth and leaders for their 30 mile handcart trek at 10:00 this morning (after another post-op visit with Dr. Beck). The temperatures were pleasant enough that I don't think heat will be so much of a concern. I will post a few pictures of her and Jase and Jarin so you can see how they looked heading out the door. I could tell she was excited, a little nervous about her own abilities to complete the trek, but happy to be getting out of here. One thing is certain: Boise will never be a favorite place for Shayla; at least not while the reality of her cancer, treatment and cure are so fresh in her mind and consume every moment and aspect of her life! I do hope that changes since I don't anticipate Jase and I will go anywhere else!

Jase was like a little kid getting ready to go. I am glad they are going. Honestly, it will be nice to have a break from giving shots, nagging about doing sinus rinses or taking meds, or drinking enough, or eating enough....even if only for a few days!

Excited And Can't Wait!

We have recieved the information that i will be going on the trek. Yeah for me! i can't wait and i am so glad that grandma sewed my dress a lot of people at the meeting liked it. the bone scan came back clear also just for your information. and if you can't tell by now this is shayla typing mom told me too.

ok i don't have anything else to say.

shayla

Fluid~what a difference a liter makes!

I know it has been too long since I have blogged (4 days is too long!). Things are better for Shayla at this point.

Monday we saw Dr. Stauts (prosthodontist) and he did a lot of adjusting on her obterator. It really does look like a retainer. He told Shayla that it shouldn't hurt or bother her at all, and to remove it and call should that happen. Right about 5pm she felt her gums were being rubbed, so I had to call and leave a message to get in again. Shayla and Jase went back yesterday to make more adjustments, and now it is all better. No more rubbing. The obterator helps Shayla sound like herself, eat and swallow better, and even drink from a glass or bottle without a straw!

We got her started on home-administered IV fluids (1 liter per day) which started yesterday and she got her second liter late this afternoon. She is more relaxed, yes-relaxed is a good way to describe it. Shayla seems to be more at ease today than she has been for a couple of weeks. I can now hang a bag of fluid, complete with flushing her port line with saline before and after, as well as injecting the Heparin lock to finish up the job. It should be easy to get a nursing degree once this is over!

We see Dr. Chang tomorrow for a regular check up, and the office already knows of Shayla's desire and determination to participate in the youth trek next week, so hopefully there will not need to be a lot of convincing on my part. Dr. Chang has always been supportive of the idea depending on where Shayla would be in her treatment and how she is feeling. I told the nurses this is imperative for Shayla's mental health that she be able to participate. Chemo can wait a few days, right?!

A NEW CHEST CT AND BONE SCAN DONE
Don't be concerned. These were 'routine' scans done to get a baseline to compare to now that the tumor is gone. The remaining checks (post chemo) will be compared to these new scans to watch for anything suspicious. THE GREAT NEWS IS THAT THE CT CAME BACK WITH NO SIGN OF METASTASIS! We expect the bone scan to be the same-nothing but bone!

Up Next:
Tomorrow will be a busy day. After her lab check and visit with Dr. Chang we will go to Morris Physical Therapy for work on her jaw mobility. Since the surgery, her range of motion (ability to open wide) has been limited. It is returning, but some therapy will help her learn some tricks to do at home. This will also help her get her obterator in and out easier.

Friday we will see Dr. Whitfield again (ophthalmologist) to do a Visual Field test...some test where Shayla will have to follow or point to dots on a computer screen for 15 minutes. Such fun!

Saturday---I'm sleeping in!

Hitting The Wall---HARD

We are almost done with chemo Round 7. This has been a very difficult session for Shayla. Consider this, up to this point, the chemo has been tough enough: the time, the sleeplessness due to the medications, the beeping of machines, the fatigue. However, the goal was understood: beat this cancer! Now, we got the great news that all margins are clear after tumor removal, the cancer is gone. Nevertheless she still needs to finish the chemo--7 more rounds after this one--and it doesn't seem fair. Shayla doesn't want to do anymore chemo. She wants to be 'normal' like the rest of her friends.

Yesterday was the most difficult day. She was ready to go home, NOW. I was so afraid. Shayla was so consumed with the desire to go home. She just wanted us to stop the chemo and start it another day, or not at all. Shayla had hit the wall, and had hit it hard. All I could do was tell her I understand her desire to be out of here. [To me, one of the hardest things a parent must endure is the suffering of her/his child and not being able to remove the suffering! How Heavenly Father must have ached for our Savior in Gethsemane when He cried out to "let this cup pass from me"!] Shayla repeated over and over, for at least 15 minutes, "I want to go home, I want to go home!" amidst her sobs and pleas for me to take her home. She almost worked herself into a tantrum! This chemo makes Shayla so vulnerable. She is always going to be one of my 'little girls', I just hope I can comfort her.

Shayla finally agreed to go outside for walk with me. Perhaps the fresh air and freedom from the walls would do her good. Gratefully, the weather was beautiful and we enjoyed some quiet time in the quiet outdoors. No ventilation fans, instead birds chirping. Once we returned, she was a little bit better. Resigned to the fact that we are here until Sunday, perhaps, but at least would look at me and engage in small conversation.

Shayla's chemo didn't get started until 8 p.m. on Thursday because she was so dehydrated and it took 3 liters of IV fluids to get her hydrated enough to make the chemo 'safe' for her body. With the late start, it won't be until 1:00 a.m. Sunday that she will be done. That won't stop us from checking out of here. As soon as she is done I promised Shayla I will take her home, regardless of the hour! The nurses all understand it. I am sure they see it all the time with the pediatric patients here.

One stipulation of returning home early tomorrow morning may be the need for IV fluids to be administered at home to keep Shayla hydrated. We can handle that. Once she gets her obterator fitted correctly (on Monday) and she retrains her mouth and tongue to swallow with it in place, she should be better able to drink and stay hydrated. The doc wants her drinking 2 liters a day. Does anyone do that on a regular basis? I know I don't!

We've read a book together while here, have watched lots of "Animal Planet" on T.V. and have taken a few walks to keep Shayla's mind on getting through the next moment. That's all we can do, make it through each moment. That, and of course, pray always!

We are less than 12 hours away from home. Shayla's appetite is gone, not eating much. I told the nurse she needs to really push Dr. Camilo (the clinic doc doing hospital rounds this week, not Dr. Chang) to discharge Shayla as soon as we are done, with IV fluids or not.

It's That Time Again, but the perspective is brighter!!

Wednesday, July 15th:
Saw Dr. Beck this morning to remove the packing and see how the healing is going. Dr. Beck was very pleased with what she saw (it looks a bit grotesque in there if you ask me, but it could be worse, right?!). She came in and gave Shayla a big hug as soon as she entered. "We got it!" . That's all that needed to be said.

Now the daily care is on Shayla's shoulders...
Shayla needs to rinse her sinuses at least 2 times a day now while the defect site heals as well as the skin graft site. She got a specialized kit just for that purpose from Dr. Beck with specific instructions for frequency and how to use it. We will still see Dr. Beck every other week as the site heals to check progress, but the hard part is over!

Dr. Stauts' office was the next stop. He looked at the site, saw the obterator made from Shayla's mouth mold (no, not the fungus, silly, the form made over a week ago!) and will begin to modify it to fit her mouth needs better. He seemed a bit (pleasantly) surprised that he needs to remove so much of the device, but that just means good news for Shayla: her defect is not near as large as Dr. Stauts anticipated. We would have waited and had him work on it today while we were there, but the packing removal made Shayla ill so we postponed any further abuse in her sore mouth until next week. Hopefully she will feel well enough after chemo to get it done on Monday. She is already wishing she had stayed and gotten it done today. It is hard for her to swallow liquid, and her voice is very nasally and sometimes hard to understand/hear. We will all have to be patient with this time: She with our inability to sometimes understand her, and we need to be patient and try hard to look at her when she is speaking to minimize the frustration for her and for us. Thankfully, the obterator should alleviate much of those two problems, so this is a temporary trial.

We now look to Thursday (tomorrow, although technically at 12:47 am it is Thursday already!) and another important hurdle: the HALF-WAY MARK for chemo! We are so lucky this is a 3-day session, to ease back into the routine since the surgery pre-empted her "regularly scheduled program". Now we pray that the remaining chemo will continue to be tolerable for Shayla. The 3-days are still physically more difficult than the 5, but hopefully it won't be as bad as this past week and a half has been for her. She has been more sick (vomiting, headache, nausea, etc.) post-tumor removal than with all of her chemo sessions combined! It would be nice to know if the worst is over.

We heave a huge sigh of relief still, knowing (and having the written pathology report in our hands) there is no sign of the cancer in any of the tissue removed. Isn't that amazing? The tumor mass removed was huge (2.5X4.5 inches, about), yet it was all dead--NO CANCER! The French Family will never doubt God hears and answers prayers! Again, we know His will could have been different than what we prayed for, but we humbly and tearfully offer our gratitude for His grace to Shayla and our family.

There is a wonderful hymn we get to sing at church that sums up the past week:

When upon life's billows you are tempest tossed,
When you are discouraged thinking all is lost,
Count your many blessings, name them one by one,
And it will surprise you what the Lord has done.

Count your blessings name them one by one.
Count your blessings see what God hath done.
Count your blessings, name them one by one.
Count your many blessings see what God hath done.

Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,

And you will be singing as the days go by.

So amid the conflict whether great or small,

Do not be discouraged God is over all.

Count your many blessings; angels will attend,

Help and comfort give you to your journey's end.

We have been tossed, and burdened with a load, but there have been so many angels among us, right here in our own family, neighborhood, church family, and in many states across our country, that we would be foolish to say 'we were lucky'. Luck has nothing to do with the miracles we have received! We have been BLESSED by Heavenly Father. So SMILE! And THANK YOU ANGELS for giving us the help and comfort we need to the end of this journey through the tumor valley called Ewing's Sarcoma!

THE MARGINS ARE C-L-E-A-R !-!-!

The Pathology has come back to Dr. Beck's Office. She got it all, the margins are clear!!!

After a rough day yesterday (we almost had to take Shayla back to the hospital), this morning's news was all we needed to make this better!

Believe it or not, no one answered the phone this morning when Dr. Beck's nurse, Tempe, called to share the results of the pathology, and Mom was outside doing some therapeutic yard work. Anyway, when I came in and saw the message light blinking on the phone I was very nervous at first to hear Tempe's voice, but she got right to the point to let us know "all margins came back clear"!!!!

A great burden has been eased! The storm of the past week has definitely helped prepare us to appreciate even more what today's Good News means for Shayla as well as the rest of our family. There are many well-worn cliche's and analogies that I could insert here, but will leave those to your imaginations.

What needs to be said is we are GRATEFUL for such a huge blessing. We are GRATEFUL that Heavenly Father's will was to bless Shayla with an end to cancer and we pray it will be for good.

There is still a fairly long road to walk, but by faith we can all make it through (oh yeah, and patience, and long-suffering, and great friends and families standing by us every step of the way!). I am grateful it doesn't seem that it will be quite as hard as the first half has been.

We're Home Again

Once things started moving along inside, Shayla started feeling better. She is now able to eat and keep stuff down and her pain meds can again be administered here at home.

It's good to be away from the hospital. But there is a new favorite room, #34. It is big, and much quieter than 36, still has a great view of the foothills, and no window in the door. The nurse told me 34 and 35 are the most requested rooms. However, since 35 was Shayla's first chemo room, that one may never be on her preferred list.

Here at home, everything is still in disarray, can you say 'stressed'? I'm feeling sorry for myself today so will close the blog for now. We are glad Shayla is home and can spend a week before returning for chemo again.

Two Steps Forward, One Step Back...

..to the hospital.

Shayla just wasn't having a very good day today. She was in pain for much of it, and no matter what she ate or drank, it kept coming up. So, here we are back at St. Luke's.

What are we doing here?
After speaking with Dr. Chang tonight (after the third episode of losing all that she took in) she asked us to bring Shayla back to the hospital for rehydration and to get her pain back under control.

In the past hour and thirty minutes she has been given Phenergan, Benedryl, Morphine, and lots of fluid. She is finally starting to relax and rest. Her pain is back down to a "3" (on a scale of 1-10). Medical Imaging just left after taking an X-ray of her abdomen; she may have a bowel blockage which would explain her vomiting all she has been drinking and eating. That would be an "easy fix". We should have the x-ray results within 30 minutes if the radiologist is not too busy tonight.

Shayla was quite torn about coming here. She did, but didn't, want to come. However, the "did" reasons were more compelling (get pain under control, quieter, able to rest...) to win the mental battle. Dr. Chang also offered the chance to come home once she had fluids in her, but seeing how late it would be (well beyond 2 a.m.) we all agreed it would be well worth it to plan on staying the night.

...12:25 a.m. and the x-ray results are in. Just as Dr. Chang suspected, Shayla's plumbing is all backed up. No wonder nothing would stay down, there is nowhere for it to go! Okay, so now she can rest well tonight and tomorrow morning we will get all systems 'running smoothly' again and we will be home for the weekend.

Shayla has requested we make doughnuts and maple bars. At least her appetite is still strong!

We are GOING HOME TODAY!

Dr. Beck came in early today (before 7:30a.m.) and checked on Shayla while Jase was here with her. Looks like we will be able to take Shayla home to her comfortable surroundings by 5 p.m. Yippee!!!

She switched from the liquid pain med to the pill yesterday because of the terrible taste and the burning it created in her mouth. No one thought about the burning! She went from 10:00 last night until 8:30 this morning with no pain medication and she actually slept from 10p.m. until 3:30a.m. with no interruptions! Then sleep eluded her, so she has been catching cat naps here and there all morning.

Today's discomfort is mostly from her left eye; it hurts all over (lid & eye) and seems to be more sensitive to light when she is tired. Dr. Chang doesn't seem worried and said it is to be expected with all the area has endured.

No pathology report yet on the tumor. Dr. Chang said the pathologists need to talk with Dr. Beck to understand all the various tags and markings the tumor material has on it. They are also waiting for the slides of the original biopsy to return from Massachusettes so they have something to compare it to. The removed material looks much different than the original biopsy because of the chemo as well as the embolization done prior to surgery so the pathologists need the original slides to make their reports. We hope to have GREAT pathology reports by early next week. The power of positive thinking....right?!

Shayla took another lap around the nurses' station earlier today to relieve a charlie horse cramp in her leg. She was setting a pretty good pace and even ventured out of the unit a little to look at the very large fish tank with equally large fish in it. We thought about 'making a run for it' but then Shayla's nurse came walking from the other direction, so we scrapped that idea and just made the return trip to the room ;-)) you know I am kidding right?

Just biding time now, letting it work to Shayla's advantage with respect to her healing. If I could just convince her to close her eyes long enough to sleep!

No More Morphine!

The Morphine pump is gone and Shayla took a liquid dose of Lortab at 5:00 p.m. That stuff tastes pretty nasty to her! She had to divide the dose into three protions and smother each with applesauce but she made it. The Lortab is for pain control, which hasn't been too bad today. She didn't use the Morphine at all when she had control of the pump.

She was feeling pretty energetic after the rinse of her mouth so we took a quick jaunt around the nurses' stations (the unit is a circle with a nurses' station at opposite sides of the circle). She held a pretty good pace, but she was pretty tired. Shayla's nurse reminded her to keep her eyes open while she was moving :-). Now that she had exercised a little, she is hungry, so we ordered in a cheesy quesadilla and 1/2 a PBJ sandwich. All these are good signs she is on the mend! Shayla hopes to go home by tomorrow afternoon. If she keeps up this progress, there wouldn't be a reason to keep her here!

Shayla is resting now. It was a night of many sleep interruptions: thirst, bathroom trips, bleeding from the mouth (not heavy, just enough to be tasted :-@) and nose, vital sign checks, etc.

Shayla asked the nurse this morning when she can go home. The reply was that Dr. Beck is hoping tomorrow. They are going to wean her off of the morphine pump today and see if she can handle oral pain meds (Lortab elixir, not a pill). Nurse Kelli asked Shayla if that was okay with her and she nodded "yes". At least now she has a goal. Shayla said this morning that her greatest discomfort is from the swelling inside her mouth. She will be starting some Tordal today to help with that.

Is sounds like today will be a busy day of getting Shayla up and moving around. That will be good, she needs to move so she is more steady on her feet and not so weak--it's surprising what a couple straight days in bed can do to one's physical strength!

There is a Reason

There is a reason for faith...Heavenly Father Lives
There is a reason for miracles...Heavenly Father loves us
There is a reason for beauty...Heavenly Father Lives
There is a reason for trials...Heavenly Father loves us
There is a reason for living...Heavenly Father Lives
There is a reason for enduring...Heavenly Father loves us
There is a reason for now...I am a child of God.

It has only been for the past 6 hours that I have been with Shayla today. Jase has been by Shayla's side since last night. I have been in awe and amazed at how wonderful Shayla is doing!

The swelling on her face has gone down, not gotten worse as I expected it to be the first day after surgery! Shayla received a Priesthood blessing from Bishop Burton and another from Jase last night and she remembers her dad's blessing specifically asking Heavenly Father to reduce the swelling in her face. Dr. Beck was pleasantly surprised by how well things look today. Another blessing.

Shayla is enduring terribly dry mouth tonight. She cannot breathe through her nose right now because of the packing necessary from surgery, so she is getting all her air from her mouth. That added to the extreme dry air in the hospital room and she is asking for water every 5 minutes. You might think it is no big deal, but when you cannot drink from a cup (her lips are very sore and still a bit swollen, so she can't close her mouth around the lip of the cup), it is a bit more challenging. We drip water into her mouth from a straw as if feeding a baby bird.

A concern about her eye...
Shayla's left eye is causing a little bit of concern right now. She is having a hard time opening it as wide(normal) as the right and keeping it open. I am not sure if it is because of the embolization done prior to surgery yesterday or due to the tumor removal. So, that means we aren't sure if this is a temporary thing or a permanent one. She can open it, and she can open it wide when she tries, it just takes more effort. "wait and see" seems like an appropriate pun, but waiting for things to happen is not my 'style'; I will be praying along with the rest of you that this will be a matter of needing time to heal rather than Shayla needing to learn to cope.

Shayla was put on a PCA morphine pump this morning in the PICU. She can control the amount and times of pain medication administration. It seems to be working for her. She has been dosing about 1 mg per hour. Not bad. As long as she needs the morphine we will be here, but it is better for her to have her pain managed and be here because she will heal faster than being home in a lot of pain. Her biggest complaint is the dry mouth and lip pain. Dr. Beck must have really had Shayla's lips in quite a contraption to keep them out of the way! The result is very raw lips that hurt to be touched by the slightest thing. The nurse has been so good to try to find things to help relieve her discomfort. We are now trying some lanolin ointment (instead of petroleum jelly) to see if the healing properties can speed up the relief for Shayla.

I think it will be a long, sleepless night for both Shayla and me. I pray otherwise, we both need to rest.

Sleepless

Jase stayed the night with Shayla in the PICU. He said Shayla has not been able to get much sleep at all. They now have her on a basal morphine drip to keep the edge off of her pain.

Dr. Beck and Dr. Christensen (PICU doc) both came in early this morning to check on Shayla. They are pleased with how good she looks. Jase says the swelling is not as bad as he expected it to be today. That is good news.

The plan for today is to transfer Shayla over to the PEDSONC unit (pediatric oncology) later today. Hopefully they will still have her favorite room waiting for her like they did yesterday (room 36).

More report will come as we have it.

A long day

It was 6:18 p.m. before Shayla was moved to Recovery. It took Dr. Beck another hour to close her up once the tumor was removed; she was done at 5:57 p.m.

Dr. Beck gives report to us:
Dr. Beck met Jase and me in the surgery waiting area and told us what she found. The tumor was still a large mass, approximately 2 inches by 4-5 inches in size. However, it was all 'necrotic' or dead, so it was a gelatinous blob when she took it out. It came out in one large piece and then broke into three when she put it on the tray!

The FANTASTIC news is that Dr. Beck said she feels confident that all the margins are good. There was one area in the back of the sinus that looked a bit strange, so she took that whole piece out and then took more for a clean margin.

Blessings just for today:

• Only two teeth needed to be removed, not the 'standard' three.
• The hole Dr. Beck had to make in the hard palate was smaller than she anticipated (put your index finger and thumb together to make an 'O', that's about how big--bigger than a quarter, but smaller than a half-dollar coin).
• The soft palate and cribriform plate were not involved at all.
• Dr. Beck was able to get up to where she needed without making one cut on the outward surface of Shayla's face.
• Shayla was very alert coming out of anesthesia and was talking with us a lot for all she had just been through. I took a couple pictures and she told me I was mean for doing so. I told her it was just to remember how far down she had been. It will help all of us remember how far our Father in Heaven has brought us up and out!
• Dr. Beck did not need to remove the orbital ridge, just the floor of the orbit as a margin. Shayla's eye should remain in the socket as beautifully as ever!
• Our other children were well cared-for by a sweet angel who volunteered her day to take care of them so Jase and I could be with Shayla. Thank you Tiffany!
• Shayla's pain is being watched vigilantly by the doctors and nurses in the PICU
• Another angel brought dinner in to my children tonight as many other angels have done over the past months. Thank you to all!

Shayla has an incision on her abdomen about 7 inches long where Dr. Beck took skin to do the graft in her sinus cavity. That will heal quite nicely.

Tonight Shayla will hopefully rest peacefully, likewise the rest of us, we are all going to need it for the next few days ahead! We are blessed. We live close to excellent doctors and nurses and Shayla is doing wel. The blessings are immeasurable!

I know there is more to tell you, but my eyes are heavy now and my mind just isn't staying focused, so for now adieu.

The Tumor is Out

4:56 p.m. just got a call from the O.R. The tumor is out. Dr. Beck is now closing her up and then Shayla will be in Recovery. Dr. Beck told the nurse to tell us that the close 'will take awhile", but then she will be out to talk with us.

Embolization complete, now on to tumor removal

Shayla tolerated the first of her surgeries today well. Although it took a bit longer than first anticipated, she came out well. Dr. Jackson was the intervention radiologist who performed the embolization at St. Al's. Apparently Dr. Davey was nowhere to be found this morning to do the procedure. I am not sure if it was a communication error, or emergency for Dr. Davey, but regardless, we had a very good, skilled doctor to do Shayla's procedure. He is a Fellow at St. Al's and does the training for the interns there. Shayla's nurse, Laurel, was wonderful too. She kept us informed and had a great bedside manner.

Because of the delay at St. Al's, Dr. Beck was a bit preterbed with the ambulance transport for not getting Shayla to St. Luke's when she wanted her there. However, they did a great job getting us to St. Luke's in 5 minutes (we went with lights and sirens but thankfully it was only to save time, and not emergent!). It wasn't their fault the doctor at St. Al's needed more time to do the first procedure! That and the fact that Shayla was put under general anesthesia and not conscious sedation required more time for her to recover before they could safely transport. [a fun side note: our transport driver was Dave Muir, the step-dad of Jarin's best friend!]

Now (2:30p.m.) she is in surgery with Dr. Beck to remove the tumor. Shayla got sick before going into the OR, but gratefully it was before and not during the procedure. Dr. Beck stepped back and talked to me briefly before leaving for the OR and said she didn't realize that if they didn't get clean margins in the surgery, that the Proton Beam radiation therapy would cause Shayla to go blind. Dr. Chang spoke with her about that today. "That's not acceptable." was Dr. Beck's response. She is going to do her very best to get those negative or "clean" margins we need. (keep praying!)

Another surprise
Dr. Beck told Shayla that there was something she forgot to tell us about, but her cheek from the side of the nose, down to her lip, and into the hollow of her cheek will be numb-permanently because the nerve to that area runs directly through the middle of the tumor. Yes, we know miracles can happen, so if Heavenly Father wants to reveal His hand in this way as well in Shayla, then she will not have the numbness or extent that Dr. Beck expects. Nonetheless, it is a part of the trial we may need to accept. The bright side is that it isn't a paralyzation of the area, only a numbness, that "after the dentist" feeling.

We will know more after the surgery (which should be about 3 hours, so complete at 5:30 p.m. our time), but Dr. Beck and the anesthesiologist are thinking they will admit Shayla to the PICU (pediatric intensive care unit) for tonight because of the amount of total time under general anesthesia between the two procedures today. Dr. Beck also wants to be able to have the higher dose of pain meds available to her that she can get in the PICU rather than regular patient floors. It will be a long night. Hopefully one in which Shayla feels little pain. I will post more when we know more.

A Little Trepidation and a LOT of Faith and Hope

In less than 7 hours we will be checking Shayla in to St. Al's (Alphonsus) and starting off a long day. I am glad we had today (Sunday) to attend church and be rejuvenated spiritually as well as rest and re-energize physically. We are all going to need it!

There is a little bit of "normal" worry, but not much. The surgery will be pretty intense for Shayla and she will be quite swollen afterwards. However, Dr. Beck feels confident that she will be able to do all of the surgery from the underside of Shayla's lip and possibly inside her nostrils, so there will be no facial incisions. If any exterior cuts need to be made, it would only be a small one on the inside of the bridge of Shayla's nose, but that would only be if Dr. Beck cannot get access to the whole tumor site from below.

More than anything else, I feel grateful we are to this point. Almost 1/2 way through the chemo and the tumor will be removed! Any palate removal can be repaired in the future with bone grafting once Shayla is deemed cured of her cancer (5 years hence) and she will have a very normal life! I am grateful Shayla has not had to deal with a lot of chemo sickness. She has been blessed.

Shayla is quite courageous. She is always presenting a strong countenance. But don't let that fool you. She is 'normal' in the sense of some fear of the unknown and even a little of the known. I am grateful she is so strong, but I am grateful that she can cry too. Crying together has actually made us stronger in the moment of adversity.

We are full of hope and faith that the surgery will come off fabulously. The best news will come after about a week once the pathology is complete on the tumor and surrounding tissue. Clear margins will mean no need for proton beam radiation. That's what we are praying for tonight, among other things.

Even though what we have experienced would not be considered 'light' by any sttretch of the imagination, we are keenly aware in our close church family and extended friends and family that there are others experiencing much more challenging trials. I can close my eyes and see the faces of many friends in my own little corner of the world who need our prayers too. I am grateful to still have eyes to see beyond myself and my family's circumstances. The Lord, in His wisdom, has counseled us to lift up the arms that hang low, and in so doing we actually find strength to meet our own challenges.

Shayla's siblings are being just as strong as she is. They don't ask a lot of questions, and when Mom and Dad need to be gone with Shayla, they don't complain. Instead, they have learned to 'go with the flow' of the day trying hard not to be demanding even when they have things they would like to do. I wish I could be in more than one place at a time. Sometimes the best anyone can do is tell our kids we love them and hold them, if only for just a minute.

I am rattling on now, it is time to get some sleep. More will be posted tomorrow as we have news to report. Your prayers and fasting are so appreciated! We know God has heard them thus far and gratefully has seen fit to bless us with those things for which we have asked. Have faith. He knows what is best for Shayla and will hold her in the palm of His perfect hand.

Monday is going to be a very long day!

Okay, so here is how it is planned for Monday:
7:00 am check in for tumor embolization procedure at St. Alphonsus RMC (where Jase works)
8:00-10:00a.m. Embolizing of tumor to stop all blood supply to the tumor. This will be performed by Dr. Neil Davies. Dr. Beck said the radiologists at St. Luke's are not comfortable nor experienced doing such a procedure on a child, so Dr. Beck opted to have the procedure done at St. Al's where "they are confident in what they are doing."
10:00-11:00 post-op recovery then drive Shayla downtown (about 10 minutes away) to St. Luke's to check in at 11:30 for the 1:00 surgery.
11:30 pre-op stuff
1:30-5:00 tumor removal surgery (Total Maxillary-ectomy on the left). We were given some details today that we were not expecting. When Shayla met with Dr. Stauts to have the Opterator mold made, he told us that she will probably lose some teeth on the upper left jaw because of the surgery! What?! Nothing like being blind-sided. We asked Dr. Beck about it and as she explained the surgery, she said 'it is standard procedure for this surgery' that teeth are removed. However, I forced the issue a little bit because she told us she won't know for sure until she actually gets in there to do the surgery that she will be able to tell if the tumor was attached to the bone (where the teeth are attached) or not. So, if the bone was not involved, she may not need to remove teeth. (She did say, however, to plan on losing teeth--I guess she wants us to be prepared for the worst. She just doesn't know how much we rely on faith. If Heavenly Father wants Shayla to deal with losing teeth, then so be it, and He will help all of us. However, if we have faith, and it is His will, we know she could surprise the doctors (again) and not need to lose even one)!
5:00 post-op recovery
6:00-6:30 I am guess-timating that Shayla will be admitted to her inpatient room for the overnight recovery stay. She will be staying in the pediatric oncology unit she usually does and has requested her favorite room (36).

Dr. Beck said she will stay at least one night, maybe more depending on pain management.

Surgery is Scheduled

We now have a date and time for Shayla's tumor removal surgery: Monday, July 7, 2008 at 1:30 p.m. After making a few calls the past 2 days trying to get the information from one doctor to another, we finally were able to get the dots all connected!

Shayla will have what is called a 'Total Maxillaryectomy" done on Monday. As part of that procedure, part of her hard palate will have to be removed. Since some of that palate has already been deteriorated by the tumor (as per the last CT and MRI scan reports), that was to be expected anyway.

With the removal of some of her hard palate (in the roof of her mouth), she will have to have what is called an "Opterator" made for her to wear in her mouth. This will be a retainer-like devise which will keep the opening closed in her mouth so nothing gets into the sinuses. We will be meeting with Dr. Beck tomorrow to discuss the surgery in more detail, and I will find out for sure, but I think she once told us that eventually, this hole in her palate could/would be closed with artificial bone, once she has been deemed cancer-free for a certain amount of time. I'll post an update to that once we have the details.

More New Docs to add to our list of 'Who's Who" for Shayla:
In order to have the opterator made, Shayla will meet with Dr. Braden Stauts, a prosthodontist, tomorrow so he can make the mold of her mouth before the surgery and the prosthesis can be "made to order", ready for post-surgery use.

On Friday Shayla will have to meet with an 'intervention radiologist" who will do a procedure that neither I nor the nurse could spell, but will in effect, cauterize the blood vessels to the tumor to decrease the amount of blood flow. We have known from Dr. Beck's initial biopsy that this was a very vascular tumor, so removal could be bloody if it isn't cauterized prior to removal. We don't know who that will be at this point.

So, as we move forward, we have a huge step of progress before us. Chemo regularly scheduled for this week is now post-poned until after Shayla is healed enough from the surgery to undergo the chemo. We are praying that all will go as expected in surgery and that the needed clean margins will be obtained through this procedure so we won't have to resort to the radiation treatment in Boston. We are also prayerful that she will be strong enough to participate in the Youth Trek at the end of this month. July 4th is Independence Day, but for Shayla, the whole month will be Independence Month as we look forward to the removal of the tumor and the 1/2-way mark of her chemo treatments!

Although Shayla won't verbalize it much, the emotion I most see from her lately is anger; not directed at her family or friends, or even the cancer, but directed at the doctors and practitioners who sometimes make her/us wait to be seen at the clinic. The MSTI clinic is one of the last places Shayla wants to spend any time (go figure!), so when there is a delay, she becomes quickly agitated and angry! Maybe it is directed to the people who are helping her because they are a visible respresentation of the chaos thrown into her life. She can't glare at cancer, but she can at a person! I know this is the hardest thing Shayla has ever endured, and she is doing a great job of it. Hopefully, in time, she will appreciate all the medical staff have done to help us all through this valley called cancer.