Friday, March 30, 2007

Visit to Ronald McDonald House

I think I'll be more sensitive to the Ronald McDonald House Charity funds since we're going to be receipients of the Ronald McDonald house in the near future. It's pretty amazing. The cost is $23.00 a day to stay in a motel like room or if you can't afford it, you don't have to pay at all. The entire RM house has a huge communal kitchen, internet library, an awesome movie theater, ping pong tables, etc...lots of stuff to keep one busy. It's amazing how the RM house is ran, mostly by charitable donations and charitable volunteers.

A quick drive back home from Seattle. Guess I better get used to the drive because we'll be going back and forth a lot.

So far, I'm pretty impressed with Seattle Children's, as far as communcation. It doesn't take them that long to get back to me when I've left messages. Prompt communication is very, very important. Sacred Heart is slower.

Last night while Jeannine was putting Jovee to sleep at the hotel, Jeannine sang to Jovee the lullaby "Lay down on your bed, pull your blanket high....", it was cute to hear Jovee singing back to Jeannine. Just one of those precious moments that makes a parent smile.

With not knowing the outcome of all the chemo, radiaiton, surgeries, etc....and Jovee's future, the precious moments are very precious. It's pretty cheesy to think of all the quotes like "enjoy every moment" or "live life to the fullest" or "if tomorrow never comes", etc....or whatever....but when you're going through a trial like what we're going thru, you really appreciate life, every little moment, every precious little moment.

I love Jovee's bald head. I hope someday to be able to brush and blow dry her long hair, like Brooke's. Brooke loves to color. I keep telling her she's the best 5 1/2 year old girl colorer in Deer Park and she lights up and believes me. The power of praise! It works. Praise people all the time.

Thursday, March 29, 2007

Seattle visit

Met Julie Park, chief oncologist here at Seattle Children's. Dr. Felgenhauer uses Julie for a lot of advice so we're actually getting a lot of wisdom from Dr. Park. She's a neuroblastoma specialist, whereas Dr. Felgenhauer is more of a general oncologist. Dr. Park was pretty good, very knowledgeable in the research and treatment of neuroblastoma.

Dr. Waldhausen, the chief surgeon, spoke with us also. Reviewed with us the results of the MRI. So the tumor is still an inch in diameter. I mistakenly thought that the mass was one centimeter in diameter but it really is one inch in diameter. So there's two options, just pick which is the lesser of two evils, I guess. Option 1 is to do the surgery to try to remove the mass. There are 4 major risks involved: 1) loss of mobility in her arms and hands, mostly the right side because of the nerves are surrounding the tumor or the tumor is surrounding the nerves, which ever way you look at it 2) possible partial loss of her voice, the tumor surrounds nerves associated near the voice box 3) something with internal leakage that would be treatable but would be a tough process to treat it. I really didn't understand it but didn't like the odds 4) the tumor is also surrounding the vertebrial artery (not the carotid artery, like Dr. Thorne at Sacred Heart said) which, if not removed correctly, can cause a stroke.

At first it was explained to us that the tumor was surrounding the carotid artery and that if the carotid artery was damaged during surgery, Jovee could die or suffer a massive stroke, or have massive bleeding. Dr. Thorne also said it was high risk because if the carotid artery was damaged, Jovee could die but Dr. Waldhausen said that one could still live because there's the carotid is only 1 of 4. Dr. Waldhausen said you could live with only 3 functioning artery.

Anyways, surgery is pretty high risk given the possibilities of 4 major things that could happen because of the surgery.

The other option is to not do surgery and proceed with high dose chemotherapy and the stem cell transplant and high dose radiation. Because surgery is not done, the higher doses of radiation will definitely have adverse long term effects. The possible immediate effects of higher dose radiation could cause deformity in the chest area, where the radiation was performed. I don't understand how the deformity will exactly happen but that's one of the side effects of the higher dose radiation. The radiation will cause the bone to grow funny or stunt the growth of the clavicle near the tumor. And the other long term side effect is the possibility of the radiation causing a second form of cancer, long term.

Anyways, it was / has been a pretty sobering day to have to make these decisions the next 24 hours and knowing that these/this decision on which way to go will effect her future.

Wednesday, March 28, 2007

1st time in Seattle at Children's

We made our first trip to Seattle Children's Hospital yesterday. Today Jovee had her MRI and MRA at 1:30 pm. We were very worried that she would be very irritable because she wasn't allowed to eat any solids after 7:30 am and no liquids after 11:30 am. She loves to eat. We just hoped that she was going to be fine and not crabby while they prepped her before the MRI and MRA. She did awesome! She took a nap from 11:00 until 1:00 and just did really well at the hospital. The Propofol knocked her out so fast it was scary. Jeannine held Jovee in her arms while the anesthiesiologist gave her the Propofol and it took maybe 5 seconds from the time it was injected into her Hickman line to have her be completely knocked out. It was pretty scary and amazing. Anyways, she did really, really good and all went well. Tomorrow we meet with the oncologist here at Children's to see about the tumor and what course of action to take next.

At the end of the month last month, the 28th of February, she had a CAT scan and the scan revealed that the mass was 1 inch in diameter and had pasted itself around the carotid artery. Dr. Thorne, the main surgeon at Sacred Heart, said it's just in a high risk dangerous spot to operate (on the tumor). So we gave Jovee as much Mangosteen100 juic as possible and will see if the Mangosteen100 helped to shrink the neuroblastoma tumor or not.

We're staying at the Extended Stay Hotel, about 15 minutes from Children's. It's got a kitchen in it and we've made many trips to the nearby Albertsons for groceries and miscellaneous stuff.

We ate dinner at What the Pho last night with Tiff and Micah and tonight at dinner at an overpriced restaurant called California Pizza Kitchen. Seattle is pretty expensive to live. Plus it's got way too many cars and people. I like little ol' Deer Park.

Tuesday, March 20, 2007

Miracle Fundraiser

We had sooooo much help from everyone for the Fundraiser on February 2nd, 07. Right around Christmas time, our neighbors, Beth and Sonya came over, excited about an idea. They told us that they wanted to do a spaghetti feed and a fund raiser for us and Jovee.

Well, that fund raiser became something huge!!!! I walked out of the DAA to go home but felt prompted to go talk to Steve. I'm glad I did. Because of all his connections and his talent in fund raisers, the auction raised a lot of money for emergency needs for us.

The auction was held at Arcadia Elementary School, dinner starting at 6:00 pm.

I'll write more later, tired now.

6th round of chemo

Jovee completed her last round of chemo on Monday, March 12th. She came back in on Saturday the 17th because she had a fever. The thermometer that we've been using, the one that scans over the forehead, measured almost 102 degrees. When Jeannine brought Jovee in to the emergency room her temp measured 99. Anyways, she's been here since Saturday night and like usual Jeannine and I switch off spending the night at Sacred Heart Children's Hospital. Today, she's been really irritable and crabby since Jeannine left at 2 pm. Jovee just would not take a nap. Finally, after morphine and benadryl, she's gone to sleep. It was a really, really hard day for me because she just was so irritable. I had to walk away from her for a while and Amie, the nurse, had to take over. Sometimes, you just have to walk away. Doesn't do anyone any good if we're mentally not into it. Anyways, she's asleep now and I'm just winding down.

Old emails to everyone

These were old emails that I sent to a group of close family and friends, updating them of things that were going on wiht Jovee.

>>> Ty Lim <> 1/26/2007 9:50 PM >>>Tough week but we got thru it. Jovee's home now. Spent one full week at the hospital because of infections and fevers but she, once again, bounced back from it all. Jovee's strength gives me strength to continue when the outlook is grim. Tiring and tuff week but we move on to the next day.

On 1/8/07, Ty Lim <> wrote:
Jovee went in for a bone biopsy and gastrostomy today, January 8th.

The bone biopsy will give us an idea of how the chemo is working, since we knew in the beginning that the cancer had spread into her bone and bone marrow.

The gastrostomy is basically a feeding tube. She's been losing her appetite so this is a sure way to make sure that she's getting the nutrition that is needed.

Both surgeries went well, she's slowing recovering right now.

She also had a CT Scan last Friday. The main tumor, which is right below her right collar bone, is shown to be shrinking a bit. It has shrunk from 2.1 cm x 3.8 cm to 2.0 cm x 3.0 cm. Thank you for all your prayers.

These two pictures were taken today, one before the surgery around 11:30 am and the other was just taken about 5 minutes ago, around 9:40 pm. Sorry the file size of the pictures were big; I didn't have my photo editing program here.

We love you and thank you for all your support.

Ty and Jeannine

Sent: Friday, December 08, 2006 2:05 PM
Subject: Jovee update Dec. 8th

Jeannine brought Jovee into the Emergency Room around midnight on Tuesday the 5th/Wednesday 6th. Jovee had temperatures ranging from 100.0 to 102.3. Because her immune system is again at a 0, we had to bring her in. The 7th - 10th day after the 1st day of chemotherapy is when her counts are at its' lowest. The good thing about the chemo is that it is hopefully wiping out all the cancer cells but at the same time it is wiping out all her good white and red blood cells.

She contracted a bacteria called C-Diff which has made her have endless diarrhea and the fever is related to this bacteria also. If her immune system had been normal, it would have fought the C-Diff but because it's at a low, the bacteria is in her stomache. Because of the bacteria, she's contagious so we're confined to the hospital room. Usually when we're here we get to roam the halls and the entire hospital. In short conclusion, she was given an antibiotic to help with the side-effects of the chemo from last week, which made her sick this week, and now they're giving her more antibiotics to battle the antiobiotics. Ugh!!!!

We're probably going to be here until next Tuesday. Doctors are hoping that the antibiotics will kill the C-Diff bacteria by then. Once she gets rid of the bacteria and when her ANC levels are higher, they're going to harvest her stem cells to freeze for later when we take her to Seattle. The stem cell harvest will take a couple of days. Once we're done with the harvest, we'll hopefully have a couple of days off and then we begin the 3rd cycle of chemo on the 18th of December and start all over again.

Anyways, that's just a short update.

Took this picture last night right before she was about to go to bed.

Subject: Jovee Update Monday 16th>Date: Mon, 16 Oct 2006 21:11:04 -0700 (PDT)>>Today was a very good day!>>> Jovee had her Hickman line installed on Wednesday but nurses weren’t >able to draw blood out of the line. They scheduled another surgery to >reposition the line for Tuesday morning, the 17th. We prayed all weekend >that when we went back this Monday afternoon, they would be able to get >blood out of the line. We didn’t want her to go through another surgery. >Thank goodness; it worked properly! Nurses were able to draw blood out of >the line and her blood flowed through easily.> Results came back from Wednesday’s biopsies. It is in her bone and >bone marrow BUT the cancer cells aren’t as aggressive as doctors had >thought. In Stage 4, there are 3 risk levels: low, intermediate, and >high. Doctors believe she’s at intermediate risk.> Doctor waiting for 1 more test to come back, will know by tomorrow >afternoon. Even though she strongly believes Jovee to be at intermediate >risk, she wants to be 100% sure.> And the best news today…N-Myc are genes inside the cancer cells. >Biopsies show that the N-Myc’s are NOT amplified, which means the genes are >not as aggressive, which means slower spreading, which means less >aggressive chemotherepay. YES!!!!!! If Jovee was/is High Risk and the >N-Myc levels were amplified, treatment would have to be more grueling.>> We Love You All. A billion thank you’s again for your support, care, >faith, and prayers.

On 10/16/06, Ty Lim <> wrote:
Today was a very good day!

Jovee had her Hickman line installed on Wednesday but nurses weren't able to draw blood out of the line. They scheduled another surgery to reposition the line for Tuesday morning, the 17 th. We prayed all weekend that when we went back this Monday afternoon, they would be able to get blood out of the line. We didn't want her to go through another surgery. Thank goodness; it worked properly! Nurses were able to draw blood out of the line and her blood flowed through easily.
Results came back from Wednesday's biopsies. It is in her bone and bone marrow BUT the cancer cells aren't as aggressive as doctors had thought. In Stage 4, there are 3 risk levels: low, intermediate, and high. Doctors believe she's at intermediate risk.
Doctor waiting for 1 more test to come back, will know by tomorrow afternoon. Even though she strongly believes Jovee to be at intermediate risk, she wants to be 100% sure.
And the best news today…N-Myc are genes inside the cancer cells. Biopsies show that the N-Myc's are NOT amplified, which means the genes are not as aggressive, which means slower spreading, which means less aggressive chemotherepay. YES!!!!!! If Jovee was/is High Risk and the N-Myc levels were amplified, treatment would have to be more grueling.

We Love You All. A billion thank you's again for your support, care, faith, and prayers.

On 10/11/06, Ty Lim <> wrote:
Sorry if I wasn't able to return some of your phone calls; been a little busy…

Today, October 11, 2006:

Had a biopsy of the tumor, bone marrow, and bone (taken from the backside, in the hip area). Also placed a Hickman line (as shown in picture) on her chest. The Hickman line is used for blood draws, IV's, and the chemo. Easy access to her instead of poking her every time. Jovee did really good today.

100% confirmed that the tumor is cancerous, it is neuroblastoma, no more 99%.

Since it has spread to different places throughout her body, it is at Stage 4.

Oncologist says that the tumor(s) is/are "aggressive" but will only know exactly how aggressive when the biopsy comes back.

From there, finding out how aggressive the tumors are, they will know better how to treat it (radiation, chemotherapy, surgery, how much to give her, how often, etc…).

Thank you everyone, again, for your thoughts and prayers and your willingness to help.

Been reading a lot about cancer. Came across something from Lance Armstrong, a cancer survivor:

"If there is one thing cancer has taught me, it's that we are stronger than we think. When times get tough, we find a way through. When we think we've had all we can take, we find the will to go on. When you believe in your strength and know how to tap into it, you LIVE STRONG."

So, LIVE STRONG, everyday, everyone.


Ty, Jeannine, and Jovee

Sent: Thursday, October 05, 2006 1:10 AM
Subject: From Ty Lim
Thank you so much for everybody's prayers. Your prayers have truly sustained us these last couple of days.

Today, Thursday the 5th, is the big day for Jovee. By the end of today, after all the tests, we should know for sure how aggressive the tumor is and if it has spread anywhere else inside her body.

Love you all.


Starting again

Well, since I'm online all the time, this is probably the best way to keep up with a journal for Jovee. Hopefully I'll make time everyday to keep up with everything that's going on with her and this battle / journey with cancer. I'm going to try posting this right now to make sure it works how I think all this will work.