Birthday

Happy Birthday Shyanne.  One years old.

Today we're going to take the kids out of school early, go to the hospital where Shyanne was born and give a gift to the nurse that really saved Jeannine and Jovee's life during the crazy delivery.  We decided as a family that for Shyanne's birthday we would give a gift to another family that has a baby that is born on this September 9th date.  Before we gave a gift to another family we decided to first give a gift to the nurse, nurse Brenda.  After giving the gift we're going to just go to visit her grave site.  Each of us is going to write a message on a helium filled balloon or attach a small note to the balloon and let it go.  I guess that's the tradition that a lot of people do is let balloons go.  We'll write short messages to Shyanne, let the balloons fly up to heaven, she'll get the message and smile. 

News for now...

Talked to the ENT Dr., said it was a polyp, Dr. is not too worried about it.  Giving Augmentin and Nasonex, has major sinus infection which has made the polyp worse.  Dr. Roller said she'll take a look at it to see if it's cancerous or not; the likelihood of it being cancerous and related to Jovee's neuroblastoma is highly unlikely.  So next follow up appointment is on the 13th of September, Brooke and Bennet's 9th birthday.

Kids started school today.  Jovee was so excited to go, she had her back pack and everything all ready last night. 

That's the news for now on Bennet.

Now news

Sweat test for cystic fibrosis.  They get these nodes hooked up to his arm, the nodes somehow stimulates the sweat glands, and then the sweat is collected. 

Sweat is collected.

Got both the sweat test and CT scan done yesterday.  I tried to get answers of the CT scan but nothing.  The ENT doctor is out doing surgeries today and might call me back on the results; otherwise she'll be back on Monday.  I have to call again today because they have to have more than one doctor to read the results.  Sure can not wait until Monday for results to see.  The nurse couldn't tell me what the abnormal mass in the left nasal passage was.  All they did was ordered some anti-biotics (Augmentin) for what they think is sinusitis, inflammation in the left nasal passage way.

That's about it for now.  No news. Yet.

Bennet appointments today

Everyone went to Silverwood / Boulder Beach today and it sounds like they all had a great time.  I had to stay home and do lots of work.  Better making money than riding a crazy ride that would make me go round and round and round and make me puke.  I'm not a theme park kind of a person so I'm glad to have stayed behind. 

Bennet's first appointment this Wednesday morning is at 9am at Deaconess.  I've only been to Deaconess Hospital once, don't want to get to know it like I know Sacred Heart.  The 9am test is an hour long sweat test to see if he's got cystic fibrosis.  Anytime there are polyps, they want to rule out CF.

Next appointment is at 12:30 pm at Inland Imaging for the CT scan of the head / nasal passage. 

That's the schedule.  Good thoughts, good thoughts, good thoughts....send some our way.

Bennet

Bennet has had this major sniffling thing going on for over a month now.  Finally took him to the Ear, Nose, and Throat doctor today....

In short, his left nostril has some kind of a growth in there.  That's 100% certain.  Just don't know exactly what that growth is.  Possibly a nasal polyp.  I guess that's the best case end of the spectrum.  Won't know until we get a CT scan done.  The ENT doc said it's likely a polyp but she can't confirm.  Only way is to do a CT to rule that it is or isn't a polyp.  If it isn't a polyp, then the doc said the worst case end of the spectrum is a glioma.  As far as what type of glioma (nasal or brain), we do not know yet until the CT scan is done.

Anyways, polyp to glioma.  Big spectrum. 

Interestingly, an isolated polyp could be connected to neuroblastoma. 

All these range of thoughts...Jeannine and I need to know real, real soon so we want the CT scan done asap.  Stupid Wikipedia on glioma states that "gliomas cannot be cured".  This is the pessimistic side of looking at things. 

It all could be nothing but just don't assume anything until we know for sure.  Just don't assume anything....

Spokane Indians game

Had a good time at the Spokane Indians game last night.  Got free tickets for the entire family through the Children's Miracle Network.  Got to go on the field before the game started.  The Children's Miracle Network game each of us 3 balloons to let go into the air after the Star Spangled Banner was sung to honor children who have passed away from cancer.  The kids all got Spokane Indians baseball.  The Indians scored 6 runs or more so everyone got Taco Bell Chalupas and a coupon for free stack of pancakes at IHOP.  Bennet threw the baseball 50 mph and won the 8 year old and under division for fastest pitch at the baseball throwing contest and won 2 free tickets to a future Spokane Indians game. 

Eventful night at the ball park.

Excellent results

Got the official report in the mail from Sacred Heart on Jovee's scans:

CT Scans:  Chest, abdomen, and pelvis are normal, stable left paraesophageal soft tissue.

Mibg Scan:  Stable appearance of focal increased radiotracer uptake in the superior mediastinum.  Noc new focus of abormal radiotracer activity

Yes!!!!

So far, so good

Great day so far...nurse Jill got it right the first poke and drew blood right away.  Jovee still cried but took good, deep breaths and the needle went in perfect the first time.  None of the 3-7 times like before.  What a blessing!

Then they moved the CT for tomorrow to today so got that over and done with.  Like always, she layed perfectly still for the CT scan.  Scanned her neck, chest, abodomen, and pelvis.  Come on!  Clean scans!!!!!

SSKI drops vs. Jovee

So as part of getting scans, both the CT and MIBG, Jovee has to prepare for protection against the radioactivity of the machines, specifically the MIBG scan.  So she has to take this super duper nasty radiation protective agent called SSKI.  The SSKI specifically helps protect the thyroid.  Normally Jeannine would just open up Jovee's G-Tube and just shoot it in but....since Jovee doesn't have her G-Tube anymore, she has to take it orally.  We knew it was going to be a struggle but having thyroid issues is something we don't want her to have to go through so she has to take it.

Yes, she cried like crazy.  The SSKI drops are about as nasty as...um...let me think...as nasty as...no words.  It's just nasty.  Try having a 5 year old take this stuff.  Well, Jovee cried and tried to find many excuses not to take it but finally Jeannine and I were prepared to just pin her down and force it down her.  Yes, we did try ice cream, major dilution in water, and much bribery but to no avail.  Finally just said I'm counting to 5 and if you don't get it down yourself then we're forcing it down you.  Well, she cried some more but...my champion, my champion.

She's so tough, with major tears and all, Jovee just put the plastic syringe pumped with her dosage of the SSKI and just gave herself the dosage.  No, it did not stay down and she just gagged and immediately threw up.

Besides the fact that she threw up and didn't get hardly any of the drops inside of her, she did it herself.  Man, she's one brave soul.  Knowing that it was so nasty she still forced herself to take it.  She really tried to keep it down but just could not.  We just told her we'll try again tomorrow (I guess this) morning.  She has to take it 5 times before her MIBG on Wednesday.  Don't
know if that's gonna happen but we have to try. 

Anyways, she just was so super brave against the nasty SSKI.  What a great example of doing something tough and being obedient.  It really took a lot for her to just do it herself. 

Let's hope the nurse or whoever is going to inject the needle for blood work get it right the first time this morning!  No 5 - 7 pokes in one sitting.  She's gonna do great and then we'll take her to her favorite-est place to eat, Noodle Express.

Let's hope for good news and no evidence of disease!  This is my prayer and my plead to God.  Let's hope that stingy spot below her left collar bone has completely shrunk to next to nothing. 

Brooke got her hair cut today.  She really likes it and has been playing with it all day after she got it cut.  I'll have to take a picture real soon to post.

Thanks for your thoughts and prayers.

Nothing new...

Our awesome buddies; Grace, Drew, Whitney, and Chaddy Chad

New blogger layout...not familiar with it since I haven't posted anything since May.

Just got back from Camp Side by Side. All I can say is, "Boost it! Boost it!" - you had to be there. Tyson is now officially "super good look'in" - also had to be there at Camp Side by Side. Jovee asks if she can go see Whitney. She really bonded well with Whitney. All of the buddies were great with the kids. Sorry you messed up your shoulders Chad. You have a year to heal up and then we'll race again.

Was a great time to once again bond with and talk to other cancer families. Some amazing kids and parents out there. Samir and Skyler are just two of the amazing kids there (and of course their amazing parents).

Not too much going on with Jovee. Just patching her weak eye and keeping glasses on her so her droopy eye gets stronger.

Jovee has scans August 17th and 18th. Good news please.

September 9th is coming around; Shyanne's 1st birthday. Today was a hard day for Brooke when she visited Shyanne at the cemetary. When it comes close to significant days like 1st birthday, it does get hard. We had family photos taken at Camp Side by Side and it was sad to not have Shyanne in the photos. We visited past home and hospital videos of her and man, it was difficult.

We're done with family vacation stuff for the summer. Kind of back to normal everyday life.

G-Tube is out

Dr. Thorn took Jovee's G-Tube out today. A little painful experience but she got bandaged up good. Hopefully she'll heal fast and her second belly button will not have any residual problems. She's not moving very much, just chill'in on the coach, watching Barbie movies.

Graduated from the G-Tube!

Great news

No evidence of disease in the bone marrow!

Party in the USA!!!!

Bone Marrow Biopsy today

Another big day in the day and life of our Jovee...

She'd been complaining, hopefully just growing pains, about a lot of pain in her arms, in her legs, hips, and especially behind her left knee cap. Oncologist says to keep good track of her for two weeks; document every time and where she hurts. After two weeks of close monitoring, oncologist was worried enough to schedule a bone marrow biopsy...

Go away and stay away...you're not welcome in Jovee's body.

Old Man

Went to the elementary school to hang out with the kids on this nice and shiny day...got on the swing, swang myself kind of high, tried to show off to the kids, jumped off, and......hurt my ribs when I landed wrong. I'm old. My body is old.

Wrote thank you cards finally for Shyanne's funeral. A lot of cards to get out. We put it off...I think because I knew it was going to be hard. And it was. Hard because of how humbling it was to receive all the love and support and hard because just revisiting her passing away.

I try to be strong and OK. Keeping busy doing things is good but yesterday, Saturday morning after Bennet's basketball game, by myself driving to work, I just broke down and cried a waterfall of tears. You have moments like that and it is good to just let the tears flow. I'm all right for now again.

We celebrated Shyanne's 6 months birthday on the 9th. Had ice cream cake and just visited with the kids again. It was nice.

Sacred Heart gave us tickets to the Spokane Chiefs hockey game Friday night so our family, Sue and Jim, and Renee's kids all had a nice night at the hockey game. Carolyn from the Sunflower program at Sacred Heart thinks of our family and gets these relief things for, I guess you would call us, "families going through really tough experiences" or "the we feel sorry for your family" family. Nice to have continuing relief and support.

Need

I need a miracle...

Yesterday was Shyanne's 6 month birthday. We celebrated with some ice cream cake. A good time was had by all.

Anybody know where I can find a miracle for cheap?

In Seattle

Got in Seattle last night. Stayed in a hotel that was supposed to be quality but it wasn't that quality. Hot tub was dirty. Had to take a good shower after dipping my foot in it. Jovee and Jeannine came along. Jovee was so excited to get in the hot tub the entire trip over so she just jumped right in. Jeannine followed and then noticed how dirty the water was. She figured she'd stay a little longer in it and suffer through the gross-ness of it. The things that parents do for their kids.

Space Needle right outside the hotel window. Not bad view of it.

Hotel also had continental breakfast. Jeannine stared at a old man pick his nose at the breakfast table; almost made her throw up because he was almost at the knuckle as far as how deep he was in the hole. Afterwards he wiped it on the chair. Jeannine seriously almost threw up. Then she almost threw up again as the old man licked that finger that was doing the digging. My back was turned so I missed the spectacle.

Had a good little trip over. Met with one of my all time favorite missionaires, Elder Loosle. We met at the McDonalds in Moses Lake. Always good to see him.

Back in Seattle today. Jeannine and Jovee are visiting the Seattle Children's area. Reminder of the days of high dose chemo, radiation, Seattle Children's hospital stay...

Got to go visit Seattle China town to go get some really good Boba Tea, Almond flavor. There's a little shop that serves really good Almond Boba Tea.

Man, I miss Shyanne a lot today. Like a lot a lot. Had her "deleted" from the membership at the YMCA. Made me really sad. She had her own little membership card with her picture on it, too. Gosh, I really really miss her right now.

It's gonna be all right.

Nothing much...

They just got done with this...should be set at the grave site soon. Happy to see that it turned out really nice but was really sad to see it. Cried almost immediately.

Fullness of Joy

A customer of mine today said that she honestly believed that I was lying to her about our situation. She couldn't believe that, in her own words, someone could have that much turmoil in their life.

I was humbled and was completely filled with joy this evening when, FINALLY, Dr. Judy called and said that she did not see anything to be concerned about on both the CT and MIBG scans.

I had been, if you really can, preparing for the worst bad news. These last weeks of Jovee's leg, knees, foot, etc...hurting her to where she would get up and cry at night time because of the pain have been making me really ill. I couldn't help but to think that we'd get the news of relapse. But no...everything looked good on the scans. The mass that keeps showing up in her scans has actually shrunk a bit. Yeah!!!!!! We really, really, really, really needed good news. We got it. Now we have some breathing room. I did try to put Shyanne aside because of Jovee's scans. We're clear for a while now. So much weight lifted off my shoulders. You really don't know how relieved that Jovee's tests came back clear. I'm drained and really tired and need to go to bed...Merry Christmas to all and to all a good night. Yes, it was an awesome present today .

No news yet

Had to get 5 pokes yesterday. Her veins look good but is deceiving. She did really good, considering it took 5 needles to get the IV in.

Yesterday was the CT, today was the MIBG.

Called to try to get results but no news. The assistant to the oncologist said she the oncologist has not reviewed the tests yet and couldn't release information.

So I wait in big time anticipation until morning time.