Tuesday, June 26, 2007

Home!!!!!!

Got here in Deer Park at around 11 pm last night. I love it here!!!! Seattle is so busy. So nice to be back in our own home. We'll be here until next Monday night. Seen a few friends from here and it's like we've been gone forever. The car lot looks really organized, got lots of things to do to organize it a little better. The kids are very happy to be back at home and Jovee woke up real happy. I completely believe in the "home therapy" - healing by being surrounded by the home environment. It's a beautiful sunny day here in Deer Park. I lost track that it was summer already.

Sunday, June 24, 2007

Blank



Our little friend Austin went home to Montana today; will miss his bright, happy personality. When not feeling sick he was just a ball of fire, a bundle of joy. Just a very, very happy boy. Thanks for keeping him in your prayers.

One thing we've learned is to just do something. The acronymns LDS should be "Let's Do Something", being a "doer of the word, not just hearers only". We appreciated so much when our home teacher, Bro. Hegwer, organized a cleaning yard night with the young mens. He'd always ask us, "Is there anything I can do for you" and we'd always reply no but he saw that our front and backyard needing a lot of help and just organized the work to be done. With Austin's family, because of being in a similar situation as them, we just gave them some help without asking them "what can we do for you?". Just look at what you think that person needs and just do something about it instead of just thinking about it. We've been the receipients of so many thoughtful people that "just do it" and always it's been a great help to us. So we're learning to just do it and not just ask if there's anything I can do, let me know.

My cousins arrived today from Denver and we've been hanging out with them all day today. They went to the hospital with us today. We had to go back for lab draws because Jovee's ANC was low on Thursday. Got the results back and they tripled by itself, up to 2,052, from 562, without any G-CSF. That was a nice surprise. We all went to the Seattle Space Needle. Man, looking out on the deck into the city of Seattle just made me miss Deer Park. It's so busy here, housing so close and so expensive; the traffic here helps me learn patience. I miss the two 4 way stop signs in Deer Park. Overall, Jovee gets better by the day. She's eating more and more on her own, even though it's not much most of the time. We continually have her hooked up to the pump and she gets almost 2 cans of Petamen Junior the last few nights. She had a great big smile on her face when she and Tyson rode the flying elephant ride on the grounds near the Space Needle. It's so nice to see her getting better and better everyday. I hope and pray that she continues to recover very well.



Saturday, June 23, 2007

Recovering and Austin

Fun at another beach.
Jovee's hot mama, my hot wife.
Jovee is recovering well. She is still not at 100%, the firecracker Jovee we know but she is getting there. We have CT Scans and more tests the first week of July. That will determine what happens next with radiation. We do know for sure that the radiation will be at least 3 weeks, Monday thru Friday. Depending upon what the tests show on the small tissue mass, radiation could be up to 4 weeks. We are leaning towards staying here at Seattle Children’s for the radiation, even though we might have the option of doing radiation at Sacred Heart.

We have yet to learn all the procedures and side effects that will take place with radiation. We’ll cross that bridge when we get there, taking it all one day at a time.
Right know our minds are focused on a full recovery as soon possible from the high dose chemo and the stem cell transplant. We are reminded again and again of the brutal effects of the high dose chemotherapy.

Another concern on our minds is our little friend Austin. He’s just over a year old and has a very aggressive form of leukemia. We’ve become good friends with his family. Our children play well together (Brooke and Megan – Austin’s 4 year old sister – have become good girlfriends, practically inseparable). We have gone through transplants together, were next door neighbors at the hospital, and have gone to church together. It’s easy to fall in love with each others children. In fact we had a pre-arranged marriage set up for Austin and Jovee. What has weighed heavy on our minds is that Austin will return to our loving Heavenly Father much sooner than we had all planned. As of today, Saturday, June 23, 2007, they have given him only a week, most likely less than two to live. Just in the last two days we’ve seen him start to fade. His mother said, “I can see the light in his eyes getting dimmer”. He has been in a lot of pain. In Austin’s bone marrow, there is a rapid growth of cancerous cells. These cancerous leukemia cells overcrowds and basically suffocates the healthy blood cells and then spills out of the bone marrow, into the bone, and then over into the bloodstream. In 1st grade terms, Austin’s mother explained, he’s exploding from inside the bone marrow outwards.
The only way to alleviate the pain, to ease his suffering is to give him high doses of morphine. They are leaving today, Saturday, to go back home because, as mentioned before, the doctors can’t do anything else for Austin.

What to think of all this, I ask myself…what if this was Jovee? Is this preparing us for what could happen to Jovee? I don’t have any spiritual insights or fatherly intuitions about whether Jovee will be taken home or not…the only thoughts that I’ve had through all of this for the past several months is to just appreciate, love, and enjoy every hour with her, with Tyson, Brooke, Bennet, and Jeannine. Who knows…anyone can be called home at any time. A couple of days ago Austin had a big party at the hospital. His parents wanted to celebrate life. Celebrate life…celebrate the moments that you and I have with each other. “Why should we mourn or think our lot is hard, Tis not so, all is right…And should we die before our journey’s through, Happy day, all is well, we then are freed from toil and sorrow too…” I know this is repetitive.

It’s these times, experiences, and moments that brings out the eternal perspectives and what is needed for our eternal welfare. Learning how to accept what is given to us even though we may not fully understand it. Finding a way to believe when your heart is truly broken. That search for peace that will soon mend a shattered heart.


Tuesday, June 19, 2007

Somber Day


We've become good friends with another couple with a son that is just a little over a year old. He and Jovee were next door neighbors at the hospital and they really enjoyed seeing each other. At one time, Jovee had her purple sunglasses on, saw Austin, lifted one side of the sunglasses up, gave him the "I'm checking you out" look...it was a Kodak moment, very cute. His parents just found out today that his acute lymphoblastic leukemia (ALL) is very aggressive and the doctors here told them he has just a week to live. With permission from his mom, this is a picture of Austin. He's an awesome baby. They're going to take him home either tomorrow or Thursday. Would you please keep Austin and his family, especially his dad, in your prayers. Thanks.

Next steps...



Dr. Park, the top oncologist here at Children's, in yesterday's appointment, said that the infections that Jovee had while neutropenic were very, very dangerous infections and she was very pleased with how Jovee's body healed and recovered and fought those infections. We were very greatful to know, again, that her body was blessed with fast healing.

We have to stay here since she just got out of the hospital for maintenance. Even though she's been discharged, she's still not the firecracker Jovee that we know, still not at 100%. We have follow-up checkups on Thursday and next Monday again. We have to keep her well hydrated because Dr. Park said that the chemo is still in her body and still needs to be flushed out. After next Monday's appointment, we could go back home to Deer Park if all looks well. Everything should be fine so we'll be able to be home for the weekend for our niece's wedding. Then the follow up CT Scans and MIBG will probably be after the 4th of July. Then we'll know about that soft tissue mass...if it's another nueroblastoma tumor or just lymph nodes or whatever...anxious to know. Then radiation begins. Dr. Park said at least 3 weeks of radiation, possible 4 weeks if it is neuroblastoma. Radidation definitely has side effects but we'll cross that bridge when we get there. The good thing I guess is that that mass is only 1 inch in diameter. The main tumor that was removed by surgery was 4 inches in diameter so comparatively this should be killed by radiation, if it is neuroblastoma.

Saturday, June 16, 2007

Holy Meds



So we thought we'd have a break from the hospital scene but here's the scene that we came home with to administer to her. That's OK, whatever it takes to take care of our baby.


Bactrim, Zovirax, Ursodiol, Oxycodone, Nystatin Cream, Fluconazole, Benadryl, Tylenol, Zofran, Sunscreen.


She did OK today. Mostly wanted to lay on the couch. She took a couple bites of a banana and ate her favorite - corn dog (well, she rarely eats the dog, just the corn bread).


Fishing

First place for catching the smallest fish, a 3 inch Sunfish.

Reeling in a big one.

A 12 inch keeper.
13 inch keeper.
12 inch keeper.
All of us went to a Fish Farm in Fall City, WA., where they had a trout pond for the kids to fish. All had a good time. Biggest fish caught by another kid was a 22 inch rainbow trout.




Home Sweet Home

Well, not all the way to Deer Park home but I'm so excited to get out of here and get dishcharged. Jovee's last dose of Vancomycin, an antibiotic, is at 10 am, runs on the IV pump for 1 hour and THAT'S IT!!!!! She's done!!!!!

So the next step is another appointment with the main oncologist on Monday and then we'll map things out. The soft tissue mass is definitely a concern so we'll get tests done for that soon, we don't know when but soon. Results/findings on the mass will determine whether we stay here in Seattle or go back to Sacred Heart in Spokane. Oh I hope it's nothing and that she could do the remaining radiation treatments in Spokane.

From what I remember, she has 13 rounds of radiation. Don't know what it all entails, we've been focused on this phase. So we'll see on the radiation phase and what it holds.

Brooke got lost yesterday here at the hospital for about 15 minutes. We were on the 2nd floor playing at the playground and Jeannine had to bring Jovee back up to her room. Jeannine had started walking and Brooke wanted to go up with her. I was playing football with the boys and told her to go fast and catch up with mom. I guess mom was too far ahead. So the boys and I played for another 15 minutes, went back up to Jovee's room. A few minutes later the security guard came with Brooke and Jeannine and I looked at each other with the "I thought she was with you" look. Brooke was almost in tears and after we asked her questions she just broke down and bawled. Poor girl! She was so scared. Big hospital to get lost in.

Even though it's cloudy and light showery there is sunshine in my soul. I'm just so happy to be able to get Jovee out of here.

Friday, June 15, 2007

Day 14




Nurses have just now taken Jovee off of Morphine, to Oxycodone. That's good news. I've never been happier to see a poopy diaper than just an hour ago. It wasn't watery diarrhea, as it has been, anymore; looked like baby carrot food, which means her stomache is healing also. Didn't mean to be that descriptive but what a wonderful diaper change.

Dr. Andrews, the current attending physician (the a.p.'s rotate a month at a time) came to do the daily check up and said, "She is recovering remarkably well" and (fishing for words, paused, and then...) "I've NEVER seen anyone recover this well and this fast." He's even an old seasoned doctor. He said kids that have gone through what Jovee just went thru at this time still have bad mucositis, among other side effects. It truly takes a minimum of 4 weeks to get where she's at.
We are going to be dishcharged tomorrow, Day 15!!!!!!!!!! Soooooo happppy!! So thankful for the miracles we've seen.

Prayers have helped with the healing process, I know. From everyone in Deer Park and Spokane, to my family and friends in Colorado, friends in Utah, the ward here in Seattle, Sister Price's mom in Las Vegas, family members in San Francisco, a new email friend from California, a former amazing Elder from Alabama that served in Spokane, to others across the United States that Beth Oiland (our wonderful neighbor in Deer Park) has summoned, we appreciate and understand more how multitudes of prayers can bless one little 2 year old. Just incredible and amazing! THANK YOU. Jovee has been walking around the past 3 days on her own.

Just sitting here watching TV and typing and a T-Mobile cell phone commercial came on - "Do you know karate cause your body's kick'in!" - on the commercial. That's so funny and dumb.



Thursday, June 14, 2007

Normal Day

Nothing new today, just normal hospital stuff. A nice visit from Doug and Jeannine Carter. Doug was here on business so after his business engagements, they both stopped by to see us and Jovee at the hospital. So very nice to have visitors from home. Really good to get hugs from home. Jeannine Carter helped my Jeannine clean out our lunchbox room because we got to move to an actual apartment. We were staying in Building A of the Ronald McDonald House, which was a room similar to a double bed hotel room. We managed to do it for the last month but man, it sure is nice to actually have our own apartment with our own kitchen, 2 bedrooms, and a living room. It's quite a nice apartment so we're very thankful for it. I'm thankful to have our own kitchen. In Building A, we had a communal kitchen. All the families that were staying there had to share the kitchen and clean up after ourselves. Everyone shared the stoves and sink and dinner tables. So a good change.

The reason we were moved is because Jovee should be getting discharged this weekend, hopefully tomorrow, Friday evening, but most likely Saturday sometime. Because she's a transplant patient we get to have our own apartment, for isolated-safety reasons.

It's very nice to have our own place because it feels more like our own home away from home. It's great to have our own apartment with our own kitchen table. The kitchen table is great to have because it's a great place for bonding with the kids. We've slacked off on our food prayers but with our own setting, it will be much easier to get back into the routine that we had back in Deer Park home. I really, really like the kitchen table. Just a good opportunity to make bonding memories with the kids.

That's all for now. Hope everyone has a great, smile filled day. Didn't mean to be cheesy but smile lots :-) and smile :-) BIG.

New Central Line

Snoozing right after the procedure to put in the new central line.


Another amazing hopeful day yesterday...ANC at an incredible 11,644. Yeah, that's nuts! That's also great because her body is like that X-Men super hero Wolverine, who has mutant powers that heal up wounds quickly.


Jovee's procedure to get a new central line in was at 3:00 pm. It's on the other side of her chest; now she's get battle scars on left and right side because of the central line. The procedure took about 2 1/2 hours and she was carted back to the room at 5:45 pm. Dr. Waldhausen again worked on her. We're comforted when we hear it's Dr. W since also this was the 3rd time he's operated on her. He did the major tumor surgery, removed the infected central line last Saturday, and today installed a new central line.


That's about it. Nothing too new. The kids get out of school on Friday. I went to the South Seattle Auto Auction today and bought a '98 Acura Integra. Should be a quick seller. Business has definitely been slower without me there. I like the car business a lot but have been thinking about opening up a Chinese restaurant in Deer Park, call it the Asian Sensation or Wok 'N' Roll. Just a thought...we'll see.

Tuesday, June 12, 2007

Day 11

6,480!!!!!! Wow!!!!!! A normal person's ANC is 2,500 - 6,000.

The important determination is not how many neutrophils are present in the peripheral blood, but whether the bone marrow is able to produce enough normally functioning cells when needed. It looks like her bone marrow would be able to fight any normal infection or bacteria right now.

Keep in mind that she's at Day 11 and this is not the normal pattern for anyone that has gone thru this regiment. In my opinion, I am witnessing, firsthand, a miracle.

Monday, June 11, 2007

Day 10

Pretty normal day other than the great news of her ANC shooting up. So happy that her body will be able to better fight any infections or bacteria that might show up. Doctors are going to later this week put in a new central line. The PICC line on her left arm is fine but a central line will be so much better.


We have so many awesome friends and support. How thankful we are to have good, true caring friends and family. One of the best things that has happened with all this is the close relationships that we've built with good friends; now they've become more than good friends but like family. My cousin Dahvy in Colorado and I have talked way more than before. Plus, after the end of our telephone calls we end with I love you. I very much appreciate this. My grandmother had 10 kids and Dahvy's the oldest grand-daughter and I'm oldest grand-son. There's responsbility to take care of the other younger relatives as the oldest and it's nice to have a very good relationship with her.


I need to share something that I've shared a little bit before. This is my testimony, my absolute belief. The day after Jovee went through the big surgery, April 17th, the Bishop of this ward came in the evening to give Jovee a blessing of healing and comfort. Heavenly words were spoken. A peace filled the room that could have calmed ANY storm.


This is from an excellent book that Jeannine and I are reading, given to us by Jeannine and Doug Carter, called Making Sense of Suffering, page 92:

“In the story of Job, we read about an unseen “hedge” or wall defending him from Satan. Evidently, the hedge shields every righteous person, lowered only rarely as the Lord sees fit. This protection reminds us of the heavenly companions he has promised.

“I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angles round about you, to bear you up.”

When Bishop Shriber gave Jovee that blessing, angels were round about us, bearing us and Jovee up. Thus her miraculous recovery. Now again, with her counts quadrupling overnight, angels again are round about us, bearing us and Jovee up. These angels, I believe, are all those that loved and still love us. My birth mother and father, my grandfather, Jeannine’s grandmother, one of my second moms who died of cancer Louise Kniephof, and so many other loving spirits. They loved us when they lived, they still love and watch after us now. It only makes sense. I know that our lives continue. It only feels right. It feels so right in my heart and in my mind.

Also, from the LDS church hymn # 96, Dearest Children, God is Near You…

Dearest children, God is near you, watching over you day and night
Dearest children, holy angels watch your actions night and day


I just had to share that. Yes, it is easier to think positive when things are going positive. Thru all this we've tried to always think positive and to have faith in the Lord, no matter what.

Perspective

The boys having a race. Bennet smoked Tyson.


I cut my left index finger, was a pretty good cut, lots of blood oozing out of it. Haven't been able to use it that well. I was complaining a little bit about it and then thought about Jovee. It's easier to deal with a little pain when I think about the pains that Jovee's been through. Nurses had to give her morphine just to change her diaper last week. The chemo basically eats you from the inside out and causes those sores and cuts, specifically in her vaginal area; thus the morphine. It caused her a lot of pain so to manage the diaper change, nurses would give her morphine, we'd wait 10 minutes, and then change her diaper. This process definitely minimized the pain and she was able to tolerate diaper changes better. So, thinking about the pains she had to go through made my little cut easier to tolerate.

Happy day, all is well

Wow! Just humbled and shedding tears of joy. Jeannine just called me and said that Jovee's ANC quadrupled to 3055!!!!! 3055!!!!! Just can't believe it. Today is day 10 and this is when she was supposed to start getting a little bit better and her counts were supposed to start going up from 0. We're so thrilled, happy, humbled, excited, amazed.

Sunday, June 10, 2007

On the up and up

She slept from 3:30 pm yesterday afternoon and didn't get up until about 1:30 am...stayed awake for about 10 minutes, went back to sleep, and then woke up about 7:10 am, and then went back to bed. Her body is healing...

ANC shot up to 720. Her platelets are at 51 so they're going to give her some more. Usually if she's around 50, there's higher chance of nose bleeds. Around 70 almost guarantees no nose bleeds.

She's also getting healthy doses of G-CSF.

G-CSF (granulocyte-colony stimulating factor) works by encouraging the bone marrow to produce more white blood cells. G-CSF is given to stimulate the bone marrow to produce new white cells more quickly after chemotherapy.

Saturday, June 9, 2007

Counts are up

Day 8

Bald as bald can be, lost all of the hair on her head pretty fast. Was expected because of the mix of chemo.

Great news! Her ANC is up at 240!!! Yes!!! The nurses were surprised because she's only on day 8. They said it happens but not very common. Usually it's around day 10 to day 14 that kids with this mix of chemo start to get their neutrophils back. Thanks for everybody's prayers!

Our good friend Steve "Blaze" Blasier has been here visiting us the last couple of days. It's always nice to have very good friends from Spokane come by to be with us. We found a really good Chinese restaurant that we'll be going to more frequently. Very good food for excellent price. Food always tastes better when the price is good. We're so blessed to have supportive family and friends.

The stake had a fathers and sons campout at the Ensign Ranch in Cle Elum so I took Tyson and Bennet. Left yesterday afternoon and got back this afternoon. Was a good time. The boys went fishing and Tyson caught a 10 inch rainbow trout. We were going to go out on the canoe but since I'm not too good of a swimmer and the boys haven't really been on a canoe, we all chickend out. Didn't feel like swimming in the cold water.

Had a proud dad moment at the campout. We slept in cabins with bunk beds. Had 5 bunk beds in our cabin. While preparing for sleep Tyson saw that one of the young boys didn't have a pillow so he asked me if he could give one of his pillows to the boy since Tyson had 2 pillows. His thoughtfulness just made me happy. Hey, we're doing something right with our kids.

Brooke went home with aunt Tiffany to Deer Park. Tiffany is shopping for a wedding dress. Her man, Micah, is a really good guy. He's been here at the hospital and Ronald McDonald House several times to give Jovee some blessings. He'll be a good brother in law.

Thursday, June 7, 2007

Blessed

IV Buddy with all her tubes and all her meds.
No more central line, now a PICC line through her left arm.

Chill'in
Battle scar from surgery to remove tumor on April 16th.
Just feeling a little lethargic.

Goofball!
Chill'in again.
Temperatures tonight of 103.4 degrees, 101.6, and 100.6. I'm thankful that her temp is going down. I think 103.4 degrees is the highest that she's ever ever been that I can think of.
If we must suffer, we might as well be of good cheer.
When upon life's billows you a tempest tossed, when you are discouraged thinking all is lost, count your many blessings...

Hey, I'm really blessed to have friends and family that care and think about us. I'm really blessed to have caring family members and excellent friends that pray for Jovee and our family. We're really blessed to have medicine to treat infections and bacteria. I'm really blessed to have a testimony and strong belief of God and Jesus Christ. Without that belief, I'd be a mess. I'm blessed to have an excellent wife. I'm blessed to have obedient children. I'm blessed to have children that adapt to constant change easily.
Stop and sit down for just 5 minutes and count your many blessings. It can change our attitudes for the better, lift our spirits to live and not just feel mopey, give us a moment of peace, and just feel better.




Staying in hospital sleep deprives you...

8:00 am - Gets poked by the vampire to get blood

8:30 am - Dental gal came in to check the sores in her mouth

9:00 am - anesthesiologist came in to explain procedure later today

9:30 am - IV team came in to change her dressing on her foot and hand

10:30 am - Another vampire came to draw blood to see her Vancomycin level

11:30 am - Pain team came in to see how she's doing

If you don't want to sleep, go stay at a hospital. Don't be negative. They're only trying to help her.

Wednesday, June 6, 2007

Possibly another tumor?

The CT Scan today also showed there's a small mass on the left side of Jovee's chest...don't know what it is.

Back on 5/10/07 there was a scan that was done and this was the verbage from 2 different people:

Dr. David Rosenbaum - Impressions:

Left anteroapical MIBG deposition is of uncertain significance:

1. it may simply be some retained radiotracer in the distal portion of the central venous catheter.

2. the possibility of disease at the abnormal site cannot be excluded

3. I reviewed the CT scan and there is some soft tissue asymmetry in the region, but whether this is disease or change is not clear



From the radiologist, Dr. Paritosh Khanna:

Findings: A soft tissue is visualized in the left paraspinal area

Impressions: Soft tissue density in left paraspinal area may represent residual tumor. Areas of stranding in the left side of the neck may be related to surgery or tumor as well.

Need to investigate further. I questioned the doctor today and she didn't give me a straight answer on the finding. I was quite livid because I felt she wasn't straight up with me.

Waiting to hear from somebody.

Another infection

CT Scan from noon today revealed another infection, unknown, that is located on the right upper lobe of her lung; don't know if it's a bacteria or fungus.

Day 5

Jeannine had her glasses on so Jovee wanted her purple glasses also this morning.
One of our new friends here took Tyson, Brooke, and Bennet to the Pacific Science Center yesterday for about 5 hours (nice liberation for us) and they all had a good time. The Science Center is a great place for kids to hang out and explore and play with many scientific stuff. A group came and feed us at the Ronald McDonald house and had a Hawaiian theme so Brooke had a lot of fun getting dressed up and learning to hula dance.
Jeannine spent the night last night and it was another tough night. The nurses kept on coming in to do the vitals, temperatures, and all that they have to do. It gets really annoying after a while, even though they're just trying to take care of Jovee, because you really don't get to rest because they have to take temperatures, heart rates, blood pressure, etc...really, it gets annoying.
So they had to poke her at 2:00 am to get a blood culture so Jeannine and Jovee had to be moved to a different room just to do that. I don't know why, usually they just do it in the room. And another poke and blood draw at 4:00 because her hematocrits were down to 17.2 (that's really low for blood). She lost a lot of blood yesterday from the nose bleeds. So another blood transfusion to boost up her hematocrits this morning.
The mucositis is getting really bad. She's got sores on the side and on the roof of her mouth. White and puffiness inside of her is what the mucositis looks like.
She's losing her hair again. She's shedding ots of hair on her pillow.
So they just did a CT Scan at 12:00 noon, waiting for results of that. An X-Ray was done that showed there was some minor changes in her lungs from the bacteria earlier this week.
So right now she's on all these meds:
Acyclovir - an antibiotic because of her zero ANC
Bacitracin - for the G-Tube to note get infected because she's at zero
Caspofungin - for antifungal
Ceftazidime - antibiotic
Diphenhydramine - for nausea
Filgrastim - to boost white blood cells
Lorazepam - for nausea
Nystatin - topical cream for her diaper area to control the sores
Ondanestron - for nausea
Ursodiol - for the Liver
Vancomycin - Antibiotic
Morphine - Lots of it to control mucositis and any other pains
TPN - Total Parental Nutrition, not a med, since we stopped feeding her by G-Tube, it's an IV drip, for her to get her nutrition, basically this is what she's eating. It's got lots of stuff in it like calcium, potassium, magnesium, etc...
So how is Jovee today, considering everything? I don't think she's doing very good. Feeling really, really crappy. I would be feeling like crap also if I had to be going through what her body is going through.


Tuesday, June 5, 2007

Nose Bleeds

"Daddy". That's what I heard right at 4:00 am this morning. Jovee had a nose bleed and she knew she needed help so she called for me. Now 6 hours later and 5 episodes of nose bleeds with her vomiting bloody clots, I'm tired and drained. I think she went through all the linen at Seattle Children's. For some reason the nose bleeding just kept coming back. They gave her platelets around 9:00 am so that seemed to help and hopefully it will continue to help the rest of the day. It took a while to get her platelets they said because they had to cross match her blood type, which is A Positive, very common blood. Whatever the case, she finally is sleeping now. What a morning!

Monday, June 4, 2007

Excellent news

Had an ultrasound on her liver, spleen, and kidneys and they all turned out normal; no yeast infections. Also, the blood draw from yesterday morning all came back negative today so just like that, both types of yeast infection are gone and the other unknown bacteria is gone.

Coincedence or miracle? When they draw blood from her they get 6 vials of blood. The day we found out of the yeast and unknown bacteria was Saturday midday, 5 out of the 6 vials of blood were infectious. So incredibly right now it's all negative. Amazing. Yes, they treated her immediately with antibiotics but to clear that fast is pretty awesome.

She's still feeling really yucky, like the picture above...the mucositis is setting in because we can tell by the way she has a hard time swallowing her saliva, the sores do hurt her.

Tomorrow is Day 4. We're just hoping that her ANC jumps up soon and fast...and that, just like the surgery, she recovers faster than everyone expected.

Sunday, June 3, 2007

Infections

So Jovee's actually got 2 different kinds of yeast infecting her and 1 unknown bacteria, as of this post. No idea where they came from. Aaargh!!!! So frustrating...but doctors says she looks really good at this stage of the treatment. So that's what we'll go with...Jovee looks really good. Positive thinking.

Quick get away

Got her unhooked from everything and took a very quick walk outside to get some sun. I know the sunshine does her good, sun therapy, I guess that's what I call it. She's feeling realy how she looks - just blah.

“Yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast” (Psalm 57:1).

Have we put our lives in order? Have we accomplished the really important things? Have we put aside that which is unimportant?

John 14:27: “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.”

John 14:18: “I will not leave you comfortless: I will come to you.”

Just had some time to search the scriptures and find some words of solace.

Another bacteria


Her 2 new IV lines on her foot and hand.

Just found out from the nurse that the blood draw from yesterday morning came back positive for a different kind of bacteria...so Jovee's got a yeast infection and another infection in her body. They don't know yet exactly what it is...results take 24 to 48 hours until they know exactly what it is. In the meantime they're treating her with an antibiotic specifically for the yeast and a broad form antibiotic called Vancomycin for the unknow bacteria.

Yesterday's 2 IV lines are only good for giving her blood and medicine. They have to poke her now every time for labs and blood because of the central line being infected and removed yesterday. So that's my Sunday morning so far and it's only 7:25 am. What an excellent opportunity for fasting and prayer!

Saturday, June 2, 2007

Tough day, good day

Central line is covered with water patch called Aqua Guard. You can see that it hangs out of Jovee and there's the red port and the white port. The red port is infected with yeast.


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So Jeannine was sitting here in the room playing Solitaire on the laptop and the nurse comes in and says, "We have to talk..." Upset sinking stomache feeling....
Jovee somehow contracted yeast infection in her blood; we knew that a couple of days ago, but it had got into her central line, in the red one (there's a red and white line). The central line, or Hickman line, is a tube that goes into the chest and directly into one of the major blood vessels. See pics above.
So because she doesn't have an immune system to fight off any disease or bacteria, we're pretty worried. Well, we're really really worried. How in the world did this happen?
Doctors had to immediately schedule a surgery to remove the line and immediately did so this evening at 5:00 pm. So now she doesn't have a central line but 2 IV lines, one on her right hand and one on her left foot. Instead of using the central line to give medicine, all the meds have to go through the IV lines and all blood draws, also. Jeannine just had to break down in front of the doctor because it's just another small obstacle that might cause her pain. I don't know...just don't know...she's had so much diarrhea today, she's been drugged up with a ton of antibiotics, she's got a lot of doses of morphine just to make her not be in pain...........all for her good and to help her heal faster. And she's supposed to be more sick than this, with mucositis, between days 7 and 10. Today is considered day 1...they count stem cell transplant days as day 0, today day 1, tomorrow day 2, etc...So day 7 starts Friday. I don't know how much more sick and how much more drugs I can handle. But Jovee is handling it the best she can so Jeannine and I have to be strong. Yes, I had a break down period yesterday and Jeannine had a breakdown period today. It's OK to break down, right...
The boys and I got to go fishing on Lake Washington today with a charity group called Cast for Kids. Some Seattle Seahawks players were there, most no name guys. Only 2 of them I was familiar with, Lofa Tatupu and Deion Branch. It was a nice, sunny day. Bennet caught 3 perch, Tyson 2 perch, and I got 2 perch. One of the bass pro fishermen was on our pontoon boat and he let Bennet reel in a 3 pound bass. The boys had a lot of fun fishing. Can't wait to get back to Loon Lake once all this is done for some silver night fishing. Fishing was a good get away today until I got the news from Jeannine that Jovee's line was infected and had to be removed.
Brooke got to go to the Woodland Zoo with Todd and Melinda Weger and their daughter Riley, awesome friends of ours from Deer Park. She got to feed the giraffe some leaves and twigs so it was a fun day for her also.

Rough morning

Jovee woke up at 7:15. Has had 4 diarrhea diapers and threw up 2 oz. of the Compleat that I injected in her. The chemo gives you bad diarrhea. Nurses gave her Morphine and now she's sleeping again.

Friday, June 1, 2007

Stem Cell Transplant

So the lady with Jovee's stem cells that were harvested on December 11th walked in our room with a stainless steel cylinder, about the size of a large hot water Thermos. Looked like plutonium, in the movies.

The nurse, Chelsea and the stem cell carrier, JoAnn, began the procedure at exactly 3:00 pm. Immediately when the started the infusion, Jovee got a nosebleed. That was a side effect that was supposed to happen but it was one quick cough and then a nosebleed, and then she threw up immediately. Because of the nosebleed, she threw up blood...and more blood...and more clotted blood came out of her. Good thing I hurt my back because I was on both knees, kneeling at her bedside, praying that she would do good and that all this shall pass. It took them only 21 minutes to actually give her her stem cells back but almost the whole time Jovee's nose was bleeding and she was coughing up/throwing up blood.

The preservatives that is used to freeze her stem cells, called MSO, 99% of the time will cause vomiting when the stem cells are given. It has an odor like corn chowder so the nurse had cotton balls in cups drenched in peppermint flavoring to help tolerate the corn chowder smell.

It did all pass and immediately after the 21 minutes were up, Jovee fell asleep. The stem cell transplant is basically like a blood transfusion. The stem cells just know exactly what to do and where to go. They gravitate to the bone marrow and then just start growing. Pretty amazing. Jovee's ANC was a ZERO today but hopefully the transplant will help her counts go up as fast as possible.

Today is day 7, a week after she first got the chemo. Usually, back in Spokane, during each of the 7 rounds, Jovee would get sick and we'd end up back at Sacred Heart 7 to 10 days from the 1st day of chemo. So this is the period where she's supposed to get sick. But with faith and prayers, she's not going to get sick. She's not going to get mucositis. Her body is going to heal and we'll get done with the radiation and then go back to lovely Deer Park. And never, ever have to do this again because all this treatment is going to work and kill every single dang cancer cell in her body. Jeannine and I are tired.