Wednesday, April 25, 2007

Fast Recovery

So she was discharged last night, Monday night, and got back to the Ronald McDonald House at 10:00 pm. It was quite a fiasco trying to get discharged because earlier in the day Dr. W said Jovee just needs to drink 150cc's of water and then she can go home, about 12:30. She completed that task around 4:00 pm. We waited and waited and waited and waited and then I just said, in a nice way, that if we don't get to leave here by 8:30 pm, I'm walking out of here with her. I got tired of waiting for 4 and a half hours (I thought she got done drinking at 3:00 pm so I told the nurses that we've been waiting for 5 and a half hours to get discharged.) Anyways, we got home around 10:00 pm. Won't go into other details.

Jovee took her first steps tonight since the surgery at about 8:30 pm at McDonalds. She's still a little wobbly, still have to hold her hand but she started walking again.

There was an outbreak of chicken pox here at the house, freaked a lot of parents out because some of these kids are at a low on their immune system and the chicken pox could kill them. Jovee might have to be quarantined for 21 days because she hasn't had the chicken pox and hasn't had the vaccine.

The kids have been missing school because they've all had yucky coughs. It's taking forever for them to stop coughing. At the Hutch School you can't be sick or contagious at all because the kids that go there are either patients or siblings so just have to be careful not to pass anything around.

Bought a 2003 Subaru WRX with 77k miles tonight. Killer deal but the man didn't tell me that it was a salvage title. Gonna cancel the cashiers check and then see what happens after that. He's going to be mad but he misrepresented the car...not disclosing to me that it was salvaged titled. Was trying to negotiate out of it, had Brooke and Bennet with me. Both had to go pee so bad that Brooke couldn't hold it anymore and peed in her jeans. I felt really, really bad but was stressed out about the WRX, since I already gave him the cashier's check and found out afterwards that it was a salvage. Steve Blasier and Jeannine said to go first thing in the morning to the bank and cancel that cashier's check, call Jordan up and say, where do you want your car?

I thought about writing a book today, called "In good hands, in God's hands"...just a thought. Probably will never do it but liked the title though. Not bad for a skinny little, bald Asian guy.

Tyson and Bennet spend a lot of time playing Playstation 2 or Super Nintendo. Got to get them more educational games. Sometimes there's not much to do here and that keeps them occupied. Brooke just colors or plays by herself. She's such a good girl, always wanting to do what's right. Like putting on her seatbelt. She always puts it on and if you don't have it on, she's the seatbelt cop. She'll let you know.

I'm tired.

Sunday, April 22, 2007

Tyson, Brooke, Bennet Pics







On a beautiful Sunday afternoon.



Both Tubes Out

They pulled out the 2nd tube, which was the tube that's supposed to be used for any excess fluid leakage coming from her lungs. Now both tubes are gone and it's definitely made a difference in pain. Dr. W said that the 2 tubes probably will cause more pain than the cut.

They're weaning her morphine ever so slowly. She was at 25 micrograms every hour but now they're down to 15 mcgs every hour.

Saturday, April 21, 2007

Angels




Tuesday night, the 17th at around 8:00 pm, Bishop Shrever, our new Bishop came to the hospital to give Jovee a blessing and he opened up with the phrase, "You're in good hands...". In the blessing he also said that there are angels in the room, here to uplift her. Man, do you feel that! I believe there are angels among us. In her baby's blessing, Jeannine remembers me saying that Jovee will have the spirit with her in her infancy, childhood, teenage, and adulthood years.

I know that there's something special going on.

The nurse said tonight that Jovee shouldn't be scrunching her legs like that. Someone that's had such a major invasive surgery, especially having the incision where it's at and how long it is, she shouldn't be moving her legs like that. And to have her arms move and flow that way it is isn't normal either. Like we said in the beginning, Dr. W said she should be in ICU at least 10 to 14 days. Something special is going on.

Friday, April 20, 2007

4th full day after surgery

Today's been a tough day for Jovee. Everytime she gets up she's whimpering, "Owie, Owie". She hurts a lot today and the nurses have been giving her lots of different pain medication. Man, it's really tough to see and hear her been in pain.

Dr. Waldhausen said that pathology examined the resected tumor and they gave word that it was dying and working it's way on becoming benign. Faith? Prayers? Mangosteen? Whatever it is, it was dying. Hopefully after the high dose chemotherapy all the cancer cells will go away forever. I really, really, really hope so.

The '93 Lexus broke down today in the middle of rush hour, around 9:00 am. I was telling Tyson that we're going to get to school on time then all of a sudden the car just dies on us. It's the alternator. We were stuck in traffic and the police officer stopped to direct traffic around us. Got towed to a auto repair shop called Walts Auto Care, got a ridiculous quote of $625.00 for a remanufactured alternator plus labor. What a ripoff. The manager, named Doug, quoted it on his screen and said to me, "Boy this thing must be made of gold". Whatever. I didn't know what the cost was going to be but thought because it was a Lexus that it would be that expensive. I authorized him to do the work but then called around. Got the alternator from an alternator shop from $167.00, bring back the core and get $20.00 off. So I'll just have them install it for $92.00 including tax because if I get it towedit would be about another $80.00. I hate it when people try to take people. Todd Munns is going to pick up the '96 Caravan in Cle Elum tomorrow. The social worker from Seattle Children's called Factotum and told them our situation and the owner of Factotum waived all of the $39.00 per day storage fee. That was really nice.

Our kids, Tyson, Brooke, and Bennet have adapted real well to all this change. When the Lexus died in traffic today, they didn't freak out or anything. They just do what they got to do and are very, very good. For all the change that's taken place since all this, they've done so well. I really appreciate them. We went swimming today at the Seattle Children's hospital on the 2nd floor. They all had a good time.

Thursday, April 19, 2007

Doubting Thomas




Tried to go a different way to Tyson's school but got way, way lost. It's a busy city. We've been eating at the China Village, a decent not too overly priced Chinese Restaurant. Their 10 ingredients Lo Mein and House Fried Rice Special is good. Tyson, Brooke, and Bennet really like egg rolls but we seem to find that the egg rolls at Chinese restaurants don't taste that good at all. They're all vegetables and no meat. Got to have meat inside the egg rolls.

Tyson and Bennet's new thing at McDonalds is the double cheeseburger. They were doing just regular cheeseburgers but for only 10 cents more you get another patty and they get full after that one burger. Richie told me about the poor man's Big Mac, that's order the double cheeseburger with Big Mac sauce; you miss the lettuce but for the money, that's pretty good.

Took the kids to the Mariners vs. Twins baseball game today. We got there at the top of the 7th inning. Three innings is pretty good for kids. It was a decent game. At the bottom of the 8th, I got a foul ball. I reached my hand out to try to catch it but I barely missed the ball but it landed in the seat right in front of me without bouncing at all. I swiftly grabbed the ball and raised my hand in the air and got lots of claps from the fans. The fans might have thought that I actually caught it. It was pretty cool.

I put doubting Thomas because I've lost faith at times, doubting the reality of God. Anyone would be mentally not there if they doubt God going through what we're going through with Jovee.

Dr. Waldhausen said Jovee would probably be in ICU for about 10 days because of the surgery. She got out of ICU yesterday at 3:00 pm, only 2 days after she got out of surgery at 4:00 pm on the 16th. Amazing. Also, the breathing tubes coming out of her mouth was pulled out because she was breathing well on her own.

Today, about 6:00 pm, the 19th of April, one of the tubes coming out of her chest area (used to drain excess fluid around her heart that is caused because of surgery) was pulled out of her. There was minimal fluid there so the doctors said she doesn't need it. The 2nd tube is going to probably be pulled out tomorrow or Saturday. I don't know exactly what that tube is for but I'll ask tomorrow.

Anyways, she still has lots of pain and is still heavily Morphined but still...over all she's doing so well. It hurts to see and hear her say, "Owie, owie". But we just try to love her, put our hands on her face, and just love her to death.

The picture of Jeannine and Jovee is the morning of the surgery, on Monday the 11th. The other two pictures of 2 days and 3 days after surgery.

Out of ICU already!

The surgeon said that she'd probably be in ICU for 10 to 14 days but she's miles ahead of recovery. They took her out of ICU yesterday at 3:00 pm and then the tubes coming out of her mouth were taken out about 6:00 pm. Her eyes are swollen but overall she's doing really, really good.

Wednesday, April 18, 2007

Recovery

So, reviewing yesterday's surgery...

The surgical team actually started at 9:30 am, even though they took Jovee out of Jeannine's hands at 8:25 am. We got the new's that they were done at 3:44 pm and Dr. Waldhausen came to speak to us about the surgery at around 4:15 pm. I actually didn't get to see Jovee until about 6:00 pm.

When Dr. W told us that the 4 major risks did not happen (still have to wait to see about the leakage with the thoracic duct - but most likely won't happen but if there is leakage it will be very minimal) and finished talking with us, I reached over to give him a hug after he shook my hands. He hugged back...not the weak, cheesy pity hug but it was a very tight, real hug. Haven't been hugged like that before. An excellent compassionate doctor / father hug. He's really good.

I went to see Jovee with Tyson today around 1:00 pm. Toughest thing I've ever done so far in my life. I cried and cried and cried. Nurse asked me if I was OK and I just simply said no. Here's why:

Even though Jovee's been sedated all this time, when I showed up, she was halfway awake but still with her eyes swollen shut. She heard my voice and tears started coming out of her eyes even though she couldn't open them. I cried. I gave her a kiss on her cheek and on her right hand and talked to her some more...you're going to be OK baby, I love you, I love you, I love you baby...a few more tears started to come down her eyes. Oh it was heartwrenching. I then asked her to sign language to me the colors of the rainbow, fish, ice cream, and I love you. She did it all with a wimper. She still was able to sign being in the condition that she was in as she responded to my request. The tears from her swollen, shut eyes was sooooooo difficult to see.

Then what made it harder was when I picked up Tyson to have him say hi to her, she heard his voice and felt his fingers touch hers. They're really good with each other and she tried so hard to open her eyes when she heard him. Oh that was sooooo hard to see.

Tyson did get emotional, almost cried and I said to him it's OK to cry. He was teary eyed when he asked me, "When is Jovee going to come home?". I explained to him everything, about recovery and all.

It was tough.

John L. Scott Real Estate team came and served a marvelous dinner for the people here at the Ronald McDonald House. Excellent mashed potatoes!

I met the Relief Society president today; she's the loving grandmotherly type. Bishop Shrever also came to the ICU and helped to give Jovee a blessing of healing. He's a good man. In the very beginning, opening of the blessing he said, "You're in good hands". That was very comforting because that's been said to her and us many, many times since the beginning of all this. It was very pleasant to hear those words again.

I tried to finish 2006 taxes today and tonight but just couldn't. I hope I don't get dinged too bad for filing one day late without sending the extension form in. I shouldn't owe anything so should be OK. Hope so.

Tuesday, April 17, 2007

Miracles




The 1st picture above of me kissing Jovee says 4/15/2007 but it was actually the morning of the surgery right before she went in at about 7:45 am.
I still can't believe all the risks were averted. I can because the Lord is omnipotent...but I just still am bedazzled.

The surgery was started at 9:30 am and was done about 4:00 pm. I didn't actually get to see Jovee until about 6:00 pm. She's hooked up to so many tubes and wires and all, as seen from the pictures. She's beautiful. Her eyes swelled up pretty bad but she's beautiful. What an amazing, powerful little girl!

We kept busy all day while the surgery was taking place, just didn't want to sit and sulk at the hospital. That helped out a lot. The pager had an 80 mile radius so they called and updated us often.

Have to go for now but I'm just still in awe. And humbled.

Monday, April 16, 2007

Day of Surgery Continued again

Just got paged again at 1:44 pm from the Surgery Desk. She's still doing great, everything still going well.

We just picked up Tyson, Brooke, and Bennet from the Hutch School, their new school here in Seattle. They liked the teacher a lot and she said they should do just fine. Tyson likes it because it's half days (from 9-12:30) and they get recess everyday, 2 blocks away from the school.

We've tried to keep ourselves busy today. We thought we had to stay at the hospital all day but the pager has an 80 mile radius. We took off to register the kids, came back here to heat, went back to pick up the kids, go grocery shopping, and now preparing lunch. Rich and I have been looking for cars to buy to get them home since they dropped off the Lexus for us. It's just an old 93 Lexus ES300 with 190k on the body and 151k on the engine. Cheap $1500 car so don't think because it's a "Lexus" that it's anything super special.

Day of Surgery...Continued

Got paged at 11:47 am. She's still going great. They're in the middle of taking the tumor out. Hopefully 100% all of it out and never ever grow back.

Got a hold of and talked to Sister Romish, the Relief Society President. We have a new family she said that will take care of us all.

Day of surgery

Man, what a tough morning as we sent her off. We both cried. Well, actually Jovee cried also so all 3 of us cried. We just gave her up to the surgery team at 8:25 am so she's out of our hands completely right now.

They paged us at 9:50 am and said they actually started the surgery at 9:30 am and she's doing good so far.

Van Broke Down

The 1996 Dodge Grand Caravan died on us 8 miles before Cle Elum on 1-90, right before the rest stop. Had to pull over the side of the road and wait for about an hour. Bennet had to go poop really bad so Jeannine opened up the passenger door, put a towel up, and Bennet pooped right there. He had to go pretty bad. Had to get towed to a place called Factototem, an auto repair shop. Just a bum deal. We had 3 months worth of stuff packed tightly in the van. Luckily Tiffany and Micah was able to pick us up at the Subway in Cle Elum, go to the van to transfer all our stuff into the back of his Nissan Titan. Luckily there was enough room to fit all of us. It rained a bit so our stuff got a little wet but all was well.

The kids really like the Ronald McDonald House, especially the basement game room. Rich and Jessica picked up the Lexus at the house and got here about 4:15 pm. Now we have a car to get around. We'll have to get another vehicle eventually but the Lexus ES300 will be sufficient. Rich came in a heartbeat once he round out that the van broke down. What a good friend. I've always thought of him as a little brother so that was nice that your brother could come help you out.

If everybody only knew how strong Jovee is! If everybody could spend 1/2 the time that we've spent with her they would just know she's such a strong and wonderful spirit. How blessed Jeannine and I are to know her and be her parents. Her G-Tube is a little red but nothing to worry about (I don't think) and her vagina area is a little red. She says, "Owie" when we change her diaper so she's hurting a little bit from the redness but not too bad.

Ever since she was a baby Jeannine always sensed that she had some pain. It must have been from the cancer in her bones or bone marrow. I still remember seeing her grimace and sweat from her forehead when she was around almost a year old. We just thought she was constipated or something else; not cancer. Now with everything that she's had to go thru...and everything that she will have to go thru after the surgery...she's just so really special. I'm not saying that just because I'm her dad. If I wasn't her dad and gone thru and seen what she's had to deal with, I would definitely be so impressed with her. She really is a special baby. I sit her in the middle of the night, full of anxiety for tomorrow morning's surgery and just can't help but cry and cry. It's ok to cry. I've tried to research and have searched for many hours upon hours and would spend many more to find an alternative other than the invasive surgery to remove the tumor but have come up with nothing. I've fought hard for her and hope that she could say to me, "Dad, you've done a very good job for me". The day they were going to poke her to draw blood, the day I had to almost walk out of Seattle Children's because they said they couldn't draw blood out of her Hickman line...I had on my blue T-Shirt for American Cancer Society Walk-A-Thon that took place at Gonzaga University. The back of the shirt said Team Captain. I wasn't really a Team Captain because we didn't participate in the Walk-A-Thon but I just paid for and gave extra money and got that T-Shirt. One of the receptionists said that I fight the role of Team Captain. I am Team Captain for the Jovee Lim team, Jeannine is my beautiful cheerleader, and the kids are the other team members. Tyson is so good with her and I'm so proud of how her just treats her and takes care of her so carefully. He's a great older brother. Brooke and Jovee get along so well; very, very good sisters that bond. Bennet loves her too much. I only say too much because he is constantly touching her or giving her lov'ins that she gets annoyed with him sometimes.

Bennet had a nightmare on Wednesday morning that just broke Jeannine's heart. He said that Jovee was in surgery and died on the operating table. He told Jeannine about it and she just became very scared and sad. I don't know what that means; the dream.

Several people have called tonight but I just didn't want to talk to anyone about the surgery tomorrow. Only because I didn't want to just break down again and cry and have a Niagra Falls of tears. I just don't understand why Jovee or why our family has to go through this trial. I've learned many lessons since the beginning of all this and people have said that they have seen the change in Jeannine and I; the refining through the fire. People try to say things like "you two are special, strong parents to be able to get through this and still remain strong...". It's supposed to make us feel better or maybe there's nothing else to say but man, I feel so weak...many times. I just have to sing and try to believe the 3rd verse of How Firm A Foundation...over and over and over and over again.

"Fear not, I am with thee; O be not dismayed! For I am thy God, and will still give thee aid; I'll strengthen thee, help thee, and cause thee to stand, upheld by my righteous, omnipotent hand."

Dear Heavenly Father, Thank you so much for blessing my life with Jovee. Thank you so much for Tyson, Brooke, and Bennet. I'm trying to be a good dad to them. Please always protect and watch over them. They are really, really good kids. Thank you so much for a supportive companion/wife/friend like Jeannine. Please please forgive me of my sins. Please overlook my sins and bless and reward Jeannine's purity and righteousness with the healing of Jovee. I don't want to bargain with you. I don't want to bargain with something like, "If you heal Jovee I will...". I've always tried to do good and keep your commandments. I've always tried to take care of my fellow brothers and sisters, your sons and daughters. I know it's ok to ask for things. I know that you're in control of all things. I know that you've watched over me since my birth in Cambodia. Please, just take into consideration the good things that I've done in my life and just consider answering my petition and request to make Jovee's cancer go away and disappear and please let me raise her until I'm an old man. Like Beth Oiland said, I can ask big because Thou art Omnipotent and a loving Father in Heaven. All this is if it is in your plans... Thy will be done. I understand that I'm your son and am just talking with you and letting you know what I want. Please, please don't take the girl. I believe in miracles and I know that you can and I hope you will make all this cancer and all the events surrounding cancer go away. I know that this life is about learning and that I'll always have trials, no matter how good I live. Trials can be blessings and I've considered and counted the many blessings that we've received going through this cancer thing with Jovee. Please keep her around until I'm an old, old man.

Friday, April 13, 2007

Leaving Deer Park

Haven't written much this week because it's been a regular not too much exciting things going on week. We've been spoiled because Jovee's been really healthy and just been a ham. We leave for Seattle tomorrow, will be gone for a duration. I had trouble giving up the business, to let someone else take over it almost completely while being gone. I'll still be the ultimate decision maker but man, it's hard just turning it over. If I can help the business while there in Seattle, fine, but if not, no big deal. My full time job for the next while is to take care of the family; everything else is gravy. That's what the benefit auction was for, so I didn't have to work. It's hard because I've been working since the 5th grade, when I first had my paper route. Can't remember ever not working since then. But really, I do have a job taking care of Jeannine and the kids. Just have to do a paradigm shift.

Monday, April 9, 2007

None


Crazy kids. They take after their mom.

Thursday, April 5, 2007

Rescheduled


Well, Jeannine and I had prepared our minds for the surgery but it had to be postponed because Jovee spiked a temperature of 103.5. Guess her body just wasn't ready. It's rescheduled for April 16th.
The doctor wanted to keep us quarantined because of the temperature. The main doctor talked to someone at Sacred Heart and whoever it was said that she's had an episode of C. Diff and should be confined. Jeannine and I became very not happy. Jovee had no signs of C. Diff (diarrhea and long term temperature). So I had to fight again. I told them that I absolutely 100% disagree with that decision and after the nurses agreed with us and talked to the doctor, after many hours, they agreed to let Jovee out of the room but until she has a bowel movement to confirm that she doesn't have C. Diff, Jovee can't touch anything. I guess it's better not being able to leave the room.
They're a little bit more relaxed here at Children's Seattle. I like it here better than Sacred Heart. The environment feels better. There's a lot to keep you busy.
She just had an X-Ray to check out if her cough could be pneumonia. Haven't got the results back yet. We had a good little walk about the hospital. This is a huge hospital. We went down to the 2nd floor to the play area and that's where I took the above picture, in the little flower garden area. It's a beautiful day today, sun is out and the temperature is really nice.

Tuesday, April 3, 2007

Angiogram


The angiogram came back like we had hoped. It showed that even if the surgeon had to clamp the flow of blood of one artery, the other artery would still keep things going. She would not likely suffer a stroke because one artery stopped the flow of blood to the brain. Stupid man's explanation is something like this: smaller river A and bigger river B flow together to form really big river C. Even if you stopped smaller river A for a short time, river B would still keep river C going. That's the anatomy of what's going on; the tumor is around smaller river A.


Today was really frustrating. Jovee had to stop eating at 5 am and stop drinking anything at 9 am. She usually wakes up asking for corn dogs or something to eat. She didn't at all ask for anything until 1:15 pm. She signed "eat" several times. What made it really frustrating was we were supposed to be here at 11:45 am, which we arrived right on time. We checked in and the receptionist said we weren't even on the schedule for today. What????? So finally they checked us in and we were supposed to go get labs (blood draws to see if her counts were all good). We go up to get labs an hour later at 12:45 pm, had to wait another 15 minutes until the vampire came in to take blood. He asked which arm does Jovee usually get blood drawn out of? Right then and there I just got very, very perturbed. She had a Hickman line specifically put into her so she would not have to get poked. They said, no we don't draw blood through the Hickman line, we always poke and draw. I had Jovee in my arms and just vented. "Look, she's been so very good all day so far today. We got here right on time and you guys didn't have us scheduled in for the labs or even the angiogram. The computers said we were supposed to be admitted on 4/4., tomorrow. We got here when you told us to and now it's an hour and a half later and nothing's happened. She's starving but still being as patient as possible. Forget it. You're not poking her and drawing blood out of her that way. We're leaving, you can do this another day."


Anyways, it all worked out but man, I was so mad. Jeannine almost started crying because it was all so frustrating. Well, like I said, it all worked out. After the angiogram...which she did really good again, she's recovering tonight. For the angiogram, a small incision in the groin area was made and the tube/scope was put through her to check out the blood flow...she's so strong and good. What a warrior! Tiffany's boyfriend, Micah and I gave Jovee another blessing in preparation for tomorrow.


We've opted to go with the surgery route, opposing the high dose radiation which would cause permanent deformities and growth stuntage.

A nurse, Heidi, that took care of Jovee back when we first started this journey in October gave Jovee a little angel that had hung in her car for the last 3 years. The little wooden angel had the words, "Believe in Miracles" on it.

We believe and hope for many miracles tomorrow when the surgeon, Dr. John Waldhausen, operates on Jovee to remove the tumor. We hope that the 4 major risks involved with this surgery will not happen. The 4 risks were 1) possible partial loss of her voice 2) possible loss of mobility in her right arm, hands, and fingers 3) possible stroke 4) leakage from the thoracic duct that would take much healing and/or surgery to repair.

I guess the whole procedure is going to be risky but hope that the end result be be a great reward.

The surgeon has to cut her open and open her up like a book (cut the sternum, cut the collar bone, collapse the lungs, carefully manuever around all the nerves to try to get all of the cancerous tumor out. I'm sure there's much more involved but our non-medical minds digested at least that much of the surgery.)

The anesthesiologist said she'll look like a machine with a bunch of tubes, wires, monitors, all hooked up to her during surgery. The procedure will start at 8:30 am and will last about 8-10 hours.

Will all of you please say a little prayer tonight, tomorrow, and the recovering days after the surgery for Jovee?

Thank you. Believe in Miracles. We've seen many and hope to be blessed with many more.

Decisions, Decisions


Well, this is what I know as of today:


The concern of the leakage was explained to me more in detail from the surgeon, he explain, "This would be leakage from the thoracic duct. This brings lymph fluid back to the heart. I don’t know an exact percentage but because of the area of the tumor it is at some risk. These leaks can be taken care of but they can require either diet manipulation, medications or possibly surgery to get them to stop."


As far as the extent of high dose radiation, the radiologist we met with today, Dr. Kelly, said high dose radiation will cause a deformity, stunted growth, in the localized area. She will be deformed. Dr. Kelly has seen children with the stunted growth and it's not a good thing. Basically, her right clavicle will be stunted and it would be disproportioned. Her muscles and bone will not grow, it would look like a small persons clavicle on the right side and her normal adult clavicle on the left side. It would be disfigured.


So all that we're waiting on is the results from the angiogram tomorrow. She can't eat after 5 am and stop drinking after 9 am. I don't like it when we have to do that to her because she doesn't understand why we're doing it. She was in such a great mood today, the high spirited Jovee that I know. She sat so good in the van for the 4 1/2 hour drive here to Seattle.


We don't want to have her experience any pain, if possible. Any parent would want the same. I think of Heavenly Father and how much he must have suffered to see His Son be mocked, tormented, and crucified. I don't understand the magnititude behind that but I think I understand it just a tiny bit with Jovee.


I think whatever decision we settle on, it has to be in the best interest of Jovee and her future and not what Jeannine and I want. What's best for Jovee and what does Heavenly Father want for Jovee. I would think that He would also want to not see her in any kind of pain. I pray and I believe once we settle with a decision that we'll get that confirmation.


My good brother Mia found something called the Cyberknife on the internet. I'm gonna study it more. Something about robotic radiation therapy. Sounds interesting.


This picture was taken on September 9th, 2006 before Jovee was diagonosed with neuroblastoma. Just doing a little bit of reflecting...




Sunday, April 1, 2007

Taking things for granted

Before I put Jovee to bed tonight I had to change her dressing. What that means to those who aren't familiar, Jovee has a Hickman line (a port for easy access to draw blood, give chemo and medicine) and it needs to be changed once a week. You have to peel a sticker designed to keep water and bacteria out off of her (so it's really sticky to the skin) and then gently clean it off and position the line back into place. It's a tedious thing.

Since Jovee had her Hickman line put in in October, she has been so good for us in changing her dressing. Out of all the times that we've changed her dressing, only once has she been antsy. It is a great blessing to have her be so calm and peaceful while we're changing her dressing. She just lays there and quietly lets us do our thing. I love her that she makes it so easy for us. Her big, round eyes just so accepting.

I put her down to sleep tonight. She's a cuddly baby, always puts her hand on my face and doesn't let go until she falls into her deep sleep. She just has to touch your face and keep you there.

The aunts and nieces and nephews came over tonight. They all know that this next trip could be big. Aunt Renee brought her camera and took tons of pictures of Jovee. They just all gave her lovin's and she gave lovin's back.

Knowing that if we do go with the surgery this Wednesday and that things could drastically change, I've held her closer and longer these last couple of days. I've shed my tears and petitioned to the Lord to please, if it be His will, to please, please keep her around for a long time. I want to brush her long hair, to take her to tennis practice or whatever sport she wants to do, to baptize her when she turns eight, and so on and on...

Seattle Children's says that children with high risk neuroblastoma have a 30% survival rate. With all the prayers and fasting, I pray that Jovee will be in that 30% category. I asked Dr. Park what Jovee's chances are of survival and she said that Jovee's jumped over all the hurdles that have been put in her path (positive response to the chemo and being able to bounce back every time after the chemo). Besides being successful in jumping over the hurdles, I believe she's in prayer rolls and chains throughout the whole United States. People in Spokane, Denver, Las Vegas, Salt Lake, California, Illinois are only a few cities that are mindful of her. With all these petitions to Him, I just hope that the prayer for her to beat this cancer will be answered in our affirmative. I thank all that have prayed for her and for our family.

Sweet hour of prayer, sweet hour of prayer...in seasons of distress and grief, my soul has often found relief...

Believe in miracles is the title of this blog. I titled that because in the very early days when we first learned of this cancer, a nurse named Heidi was magnetically drawn to Jovee. She had this little angel that had hung on the rear view mirrow of her car for the past 3 years and felt felt impressed to finally give it up to us. On the little wooden angel, it reads "Believe in Miracles"

Prayer

Well, we haven't made a decision yet on which way to go. I need to know 3 more things from the doctors before we make a final decision. Have to know if the high dose radiation will completely kill the tumor, more in depth explanation of the internal fluid leakage if we go with surgery, and the percentage of the stroke occuring.

After those questions are answered, we'll make a decision, take it to Heavenly Father, and wait for a confirmation. As a child of God, we are entitled to answers. Just like if Tyson asked me a question, I would give it to me. Ask, and we shall receive.