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Tuesday, July 15, 2003 2:52 PM CDT
Well yesterday was our last day of Chemo. We celebrated with a big thank you to all the nurses and staff that have done such a wonderful job getting us through these last 10 months. Nick offered cake and ice cream to everyone and said his good buys. We are excited about our transition into maintenance (just once a month x-rays), but sad to leave all the wonderful people we have come to know behind. They have been such a big part of our life…. All the support, understanding, tears and hugs!!!! They helped me get through and I don’t want to leave that behind, I want all of us to leave together, well and strong and excited about our future. We held it together very well, no tears yesterday (if you know me that was a big accomplishment). We exchanged names and numbers and promised to follow each others progress and get together in the future.
Our next step is to recover from this last hit of chemo and prepare for re-entry into the school system. I have been feeling all this pressure to get Nick into school by August, but I think that that is too soon. I really need to do more research on his IEP (Individual Education Plan) before I meet with the nurse and principle. I’m not ready, I don’t want to drop the ball and have Nick suffer because of it. Ryan, Nick’s psychologist offered to attend the meeting. Thank God. I am not ready to do all this on my own.
On the way home we stopped and celebrated over dinner at the Outback (one of Nick’s favorite). Today Nick, Dominic and Vincent are going to Boomtown with Grandma and Papa to celebrate a little more. I wish I could throw a big party and tell the whole world how proud I am of him and let everyone know he made it through CHEMO. I want to put a big bow on him and announce it to everyone that sees him. Ok Ok, I’ll tone it down a little but that’s how I feel. Don’t be haten.. Well, I must go to start the ball rolling on planning his big celebration. Until next time..
Rose
Friday, June 27, 2003 11:59 AM CDT
Thanks for shared heartfelt words of encouragement and uplifting. You know not knowing what is in your future is scary, but it also makes forces you to live like there’s no tomorrow. Not aimless or without care, quite the opposite, live life with love and patience and not sweat the small stuff. The kids at Children's Hospital on the 5th floor have a beautiful spirit inside wanting to just be a kid. It doesn't matter if they’re bald or have IV’s attached to them, burned, missing limbs or feeling sick.
This is how we should look at everyone around us. All we can do is love them today and hope to inspire them to take it with them tomorrow. You never know how long they will be with us.
I hope to start a sick ministry at our church in Manteca... they need assistance to see through the eyes of the families and the kids that need them. If they could emulate even a small percent of what Children's Hospital does, it would impact our families & community so much. They go over seas and to others states to help, but what about there own?
This lesson I've learned from my family, my Bart family, friends and some small groups that stepped up and assisted us, they inspired me, you inspired me. so many have said, " I feel helpless in being of any use to you." You have no idea how much you have helped me, just by sharing your love with me. We have two choices in every circumstance; we can choice to be a victim or a survivor.. We choose to survive, give back and inspire.
A lot of people wont call or share because of fear of crying or not knowing what to say. Thanks for your honesty, which seems to be the biggest obstacle for most to get past.
Love you,
Wednesday, June 18, 2003 12:19 AM CDT
Now that I’m home, I lost that everyday sharing and support from everyone at the hospital. I lost it a couple weeks ago because I didn’t have anyone to share my war stories with. Well, at least anyone with similar or worse stories than mine. I became resentful toward my church when I realized they never called me, never brought us food, never did a fundraiser……bla bla bla. I was pissed! I was hurt, I was having a pitty party and I wanted someone to listen to me and lift me up. That’s hard to find out here in the real world. Everyone is so busy, everyone wants to have a party or plan there hospital free lives around vacations or working out or losing weight or something frivolous and not get deep (a little bitter am I?). This reminds me of a movie “The Fight Club”, in the beginning of the movie this guy joins these self-help groups and becomes obsessed with them. He even joined a women’s breast cancer (I think) group. I think I’m a self-help group junkie!!! Don't worry, I haven't started fighting anyone lately!! I think I need therapy!!
You know being home, now means I have to focus on home. Were pretty messed up. I’m hoping to start back in a family group session we were doing last summer. So anyway back to the church…I called the pastor and asked about there procedure on helping families with needs like ours and he scheduled me to see him that afternoon. He shared some great experiences with me and, I admit, he out did me. I called Uncle and told him I would give him a month to gather some more stories. Anyway he asked a leader in the Women’s group to call me, we meet tomorrow, she’s making us (my family) dinner. Oh, Nick’s doing good, we go back in on Friday 6/20. Until next time. Take care!!
Tuesday, June 10, 2003 3:27 PM CDT
A little girl had been shopping with her Mom in Wal-Mart. She must have been 6 years old, this beautiful red haired, freckle faced image of innocence. It was pouring outside. The kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning and just inside the door of the Wal-Mart.
We waited, some patiently, others irritated because nature messed up their hurried day. I am always mesmerized by rainfall. I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories of running, splashing so carefree as a child come pouring in as a welcome reprieve from the worries of my day.
The little voice was so sweet as it broke the hypnotic trance we were all caught in "Mom, let's run through the rain," she said.
"What?" Mom asked.
"Let 's run through the rain!" She repeated.
"No, honey. We'll wait until it slows down a bit," Mom replied.
This young child waited about another minute and repeated: "Mom, let's run through the rain,"
"We'll get soaked if we do," Mom said.
"No, we won't, Mom. That's not what you said this morning," the young girl said as she tugged at her Mom's arm.
This morning? When did I say we could run through the rain and not get wet? "Don't you remember? When you were talking to Daddy about his cancer, you said, 'If God can get us through this, he can get us through anything!"
The entire crowd stopped dead silent. I swear you couldn't hear anything but the rain. We all stood silently. No one came or left in the next few minutes.
Mom paused and thought for a moment about what she would say. Now some would laugh it off and scold her for being silly. Some might even ignore what was said. But this was a moment of affirmation in a young child's' life. A time when innocent trust can be nurtured so that it will bloom into faith..
"Honey, you are absolutely right. Let's run through the rain. If GOD let's us get wet, well maybe we just needed washing," Mom said.
Then off they ran. We all stood watching, smiling and laughing as they darted past the cars and yes, through the puddles. They held their shopping bags over their heads just in case. They got soaked. But they were followed by a few who screamed and laughed like children all the way to their cars. And yes, I did. I ran. I got wet... I needed washing.
Circumstances or people can take away your material possessions, they can take away your money, and they can take away your health. But no one can ever take away your precious memories...So, don't forget to make time and take the opportunities to make memories everyday. To everything there is a season and a time to every purpose under heaven.
Don't you just love this little story? We all tend to connect to the story of someone hit with cancer and the helpless feelings we have, but the story could also be about a elderly person in our life feeling lonely, a good friend going thru financial struggles, a homeless person who gave up on life (a neighbor, child’s friend at day care, cousin, mailman).
There are blessing around every corner if we look (hard) for them. I seek them out everyday (especially now for Nick, Dominic and Johnny because of all the hard things they are going thru) but also for anyone who comes to me with a troubled spirit. I regret that there are so many I've missed (because of lack of communication skills, education, compassion and most of all time!!). One of the blessings I look for on the way in to work while on the train... I count all the deer I can find hidden in the rolling grass along the hillside of Dublin and Castro Valley. It somehow lightens my load and lifts my spirits. When the boys are with me they stand in the windows fighting each other to find the deer first. Johnny said to me when we counted 5 deer, that God blessed each one of us (in our family) today.
Friday, May 16, 2003 1:38 PM CDT
Nick's doing good, his numbers are a little low, but he's home and not in the hospital!! He has energy to complain about being board all the time!! We had a wonderful Mother's Day at Great America!! The American Cancer Society gave us some ticket, so we spent the night at the Embassy Suites so we could have a early start on Sunday. The weather was beautiful and the free food was great and all the free goodies we got were great! It really was nice! Nick felt so proud being the one who made all that happen. Thank you ACS for that self esteem boost to Nick.
Then, on Wednesday, two Raiderettes came to visit Nick and brought him a calendar/stat book and a Raider Teddy Bear. Signed the calender and took lots of pictures with him (pictures to follow in the photo album). Nick decided to bring that meeting to CHO and they were able to meet with other kids and give them goodies too! He's following right in my foot steps!! He gets the weekend off, so we'll take him to see The Matrix Reloaded movie. Until next time.
Wednesday, April 16, 2003 5:06 PM CDT
Saturday-we got discharged around 7pm. Nick still has not got sick!! We went straight to Rori's house to surprise Joshua during his dinner party. Me and the kids (all the kids) went to the bowling alley for a little night bowl. Sunday-went back to Rori's to say good bye to Joshua. We will all miss him very much.
Monday-Nick's blood draw shows good numbers, so I don't think Nick will have to go in on Friday. I hope this is the same reaction next month. We are not scheduled to go back in until 4/30 (of course I have no money now that were home).
Tuesday-off to work
Wednesday-off to work,
Thursday, April 10, 2003 11:15 PM CDT
Tuesday Nick had a new broviac surgically inserted. All went well, he was just a little sore that nite and the next day.
Wednesday he started chemo around 8:30pm. The doc's told us that he won't be getting Cisplat any more!! The combination of the Cisplat and Doxo made Nick really sick, and the Cisplat is the one that make his counts go way down. Eliminating Cisplat could mean no more fevers, nose bleeds, infections and TPN. That's wonderful news!!!!!!
Thursday, he hasn't got sick yet. He ate, did PT, went down to the teen room for Bingo and is watching movies. I still waiting for something to happen. This really caught me by surprise. I want to jump up and down and dance in the halls. If everything is ok tomorrow, I'll make a cake and some cookies and celebrate.
Wednesday, April 2, 2003 0:49 AM CST
Last week we were released on Monday with the intent of coming back in on Wednesday if his counts were good. Tuesdays and Fridays blood draws weren't high enough. Sunday nite after I flushed Nick (around 10:30pm) we were watching tv and he started to get a chill. I told him to cover up under the blankets and to get ready for bed. He started complaning about his legs hurting and his chill wouldn't stop. His teeth started chattering and his head started hurting. He started crying and then he started screaming. John call the paramedics and I gave Nick some tylenol and then called CHO. The ambulance and the fire department showed up CHO wanted us to come in, the paramedics wanted Nick to go the St. Dominics. He started calming down and I decided to take him to Oakland.
We arrived at the ER at 1am. They couldn't flush his line because it has a possible infection in it. They needed to give him a periphial IV (that means a major needle stuck in his hand). Nick freaked out, I mean went hysterical. Everyone tried to calm him down and tried to reason with him and he wouldn't listen. He insisted that they use his broviac line.
3:00am They gave him some Benedryl to help him sleep and left.
When they came back at 3:30am (with 2 male nurses to help hold him down), he woke up and still refused to let them stick him!!! They tried to stick him and he moved his hand around and jurked his head back and wouldn't let them do it, so I stopped them and asked them to give him some stronger medicine and something to numb his skin and a little more time. Reluctantly they aggreed and left. The Dr. was pissed, she popped her head in and said that they were coming back in 15 minutes and start his IV one way or another (whatever, on a power trip or what?!).
4:00am Well here they come the ER thugs and nurse ready for a fight. Nick was so drugged out that he didn't even fight. I'm exausted.
6:00am Finally our room was ready and we went upstairs!! His blood culture tested positive for something - bars in 4 hours!! Usually it takes 24 to 48 hrs!!!
12:30pm They wanted to flush his line again with antibioctic, hoping that we could save his broviac line. We watch him closely until 1:15pm and he was fine. As soon as the nurse left the room, Nick started moving around and was cold (here we go again!) . I covered him up and called the nurse. The Dr.s and nurse came back and turn off his IV and scheduled his surgery but not until he went thru 30 minutes of major chills!!! Poor baby. I covered him with blankets and pillows and hugged him until he calmed down and fell asleep.
3:00pm he went down for surgery and was back in the room by 5:00pm. He got a high fever and his blood pressure went down to 81/45!! His fever broke at 7pm and his blood pressure went up and down the rest of the nite. Just before we went to bed, the Dr.s called and said that Nick need to be stuck again for a blood draw.!?#@..... I balled everyone out and asked why they didn't have a line put in his arm during surgery. No real answer to that one. So I prepared Nick before he went to bed.
6:00am here comes 2 nurses ready for a fight. Nick started to resist so I distracted him for 1 second and they stuck him! I took all of 10 seconds and it was over. Me and the nurses are alright now.
9:00am, off to work I go.....
until next time.
Wednesday, March 19, 2003 4:35 PM CST
Another Metho week, Nick shouldn't get too sick this week.
Last week we shared a room with Nicolas Jose and Dina and we were comparing notes on the boy’s protocols. They have been doing chemo for 4 years, and little Elija (another little boy on the floor) has been given only days to live. Pray for him and his family, my heart goes out to them. Seeing them go thru what they have to go thru is so hard, were all so helpless. I wanted to give him whatever he asked for, but I couldn’t give him what he needed. I joined his family in praising and singing last week and that was nice. It helped lift everyone’s spirits a little. Staying focused on the Lord really helped to take away fears and give hope again. It makes it a little easier to get thru the moment.
Tonight is family night at the hospital. This is where I go to get me thru the week. It helps puts me in perspective. When we were at UCSF in December, I went home for the evening to sleep at the family house. At 6:30am something woke me up and told me to go the family room (6:30am on a Saturday)! I got up and sat down on the couch and asked myself “what next?” A few moments later a young girl walked in with her mother. For the next hour she told me about her daughter’s diagnosis and treatment. Her daughter has had her 2nd, 3rd and 5th birthdays in the hospital. She had 3 operations on her back, 2 on her brain, she broke both her arms and one leg. She was held back twice and has to fly to SFO for treatment (sometimes she has to stay for 6 months). I sat there crying the whole time. She was diagnosed with Neuroblastoma, most patients don’t live past 5 years and she was standing there in front of me and she was 12. They were here just for a check up and x-rays. I’ll never experience half of the things some of these families experience.
I love all of you and thanks again for visiting us. I have some new pictures I’ll be adding this week. Keep in touch.
Wednesday, March 12, 2003 3:17 PM CST
Hi everyone,
Being home last week rejuvenated the family again. John did a lot of cleaning up/laundry and cooking too!! It was nice to come to a clean home. It freed up some of my time to spend with him. I finally got a chance to go in the hot tub. It was nice just relaxing. He really misses my companionship when were gone. After church on Sunday we went to Target’s grand opening and bought the kids some Battle Tops and then we went to the movies to see Jungle Book II and Tears of the Sun.
It’s great to hear from all of you. Nick is getting Metho chemo this week, (this one doesn’t make him so sick!!) We (him & I) made a contract yesterday to do homework and P/T and even music/art projects while in the hospital. It’s so important to do these things when he’s feeling well. We lost a lot of ground these last 6 months, so any encouragement from all of you will help…... Auntie Renee’ offered $100.00 if he graduates this year!!!!
Make a wish came by on Saturday!!! Bahamas’ or Disney World here we come!!! (oh nooooo, I have to lose 50 lbs.!!!!!) I’m doing Slim Fast this week and Food Combining next week. I think if I switch diet styles weekly, I won’t get board and stick to it a little longer. Tina, now is the time to take you up on your suggestion of Weight Watchers, help!!
Monday, March 3, 2003 9:42 PM CST
Hi everyone,
Sunday-We got out on Sunday and headed right to Sony Metreon. We watched Dare Devil (Belen's boyfriend), played virtual bowling and headed home with a stop at McDonalds (that's what Nick wanted, blaaaa). Nick's still feeling nauseous and tossing his food, but he's at least eating! We arrived home at 7:30 pm. Nurse showed up at 8:30, we did TPN set up and watched TV until we went to sleep.
Monday-Sent the kids off to school and Nick and I picked up Belen after his blood draw, headed to Costco, shopped til we dropped and went to Quiznos for lunch (he ate most of his sandwich and didn't toss it). Hanged out at Rori's house and watched X-men 1.5 (cool bonus features).
Jacky stopped by, so sorry to hear about Ann's Mom. Ann know that we are praying for your family thru these tough time's and know that He is with you thru every step of your journey whatever path he leads you thru.
Josh and Julia finally joined the crowd around 8:00 pm.
Thursday, February 27, 2003 2:13 PM CST
The Doc ordered a test of Nick’s esophagus to see if he has something chronic going on or if there might be some fungus growing down in his stomach. The only way to check that out is to put him out and use a small camera at the end of a tube and look down his throat. I have no problem with checking for further problems, but my concern is the timing of the procedure. I spoke to the surgeon last night and she said the she would be here for 8 more days and could squeeze him in whenever I’m comfortable. I told her that I would like to talk to our primary care physician in the morning (she is off today! Dam!)
Four docs’ came in this morning and explained the procedure to me and tried to convince me to have the test done today. The attending said she got him squeezed in as a favor (that’s not what the surgeon said). I tried to get a group vote on if it were anyone of there sons, would they feel the need to rush it today?! I felt very uncomfortable not agreeing with them, but I just felt it couldn’t hurt if we waited a day or two (it isn’t life threatening and he is still hurting).
I asked the nurse to have the surgeon to come up and just confirm that we could do the procedure tomorrow or Monday, I’ll feel much better.
Well after talking to everyone, I mean everyone, this is my conclusion for today's procedure:
have it done now because he is on morphine already and when he comes out he shouldn't feel any more pain then he does now, his numbers are on the rise and we could go home soon and be taken off morphine and then he would have to deal with the pain without it.
They said that it looks like just Mucusitus and not any fungus infection, which is good and he is a little horse but doing fine, so far. He asked for benedryle and has been sleeping ever since. I think he should be ok.
Wednesday, February 26, 2003 3:43 PM CST
Hi everyone,
Nick's numbers are on the rise. His platletts are 67 (up from 27) and his white counts are 1.1 (up from .6). His chest is still hurting, so they up'ed the dose of morphin and are giving him Zantac thru the IV (this helps to keep the acid down in his stomach). This was a tough 5 day for him, the lowest numbers I've seen so far. All cultures have come back negative for any infection growths over the last 5 days, so they are checking his blood for viruses. He still has fevers but they seen to be lower, so the antibiotic's are doing something.
I'm holding up just fine. Trying to work and be with Nick is a challenge, but at least I'm close to work and can leave at the drop of a dime and be with him in 10 minutes.
The nurses all have my numbers and know to call me if any things changes through out the day.
Joshua and Belen showed up at the hospital this morning, that was a nice suprise. Happy belated b-day to you Josha. I sent them off to the city with a little money to enjoy the day.
Don't forget to send Nick a little message when you visit our site, he looks forward to your messages.
Love you
Monday, February 24, 2003 2:02 PM CST
Thanks everyone for signing in our guest page. I read each one to Nick as they come in. Remember if you have any digital pictures, email them to us so we can use them!
Nick's numbers are still low, so he continues to get nose bleeds and receive Platletts and red blood cells. He woke up this morning screaming because his mucussitus has started (when his white blood cells are down he gets a ulcer down his esophagus that burns everytime he swallows or brings something up). He's on a PSA machine that gives him a constant flow of Morphin and also allows him to hit a button every ten minutes if he needs more (I want one) just kidding... His numbers are on the rise and when they come up everything goes away, but it takes about 3-5 days.
Thanks Grandma for coming by and spending time with your baby. We love all of you.
Saturday, February 22, 2003 6:57 PM CST
Well his platletts are down to 4 (he was 37 yesterday)! time to get some more... I'm making sure that he has all his premeds first and then we'll do it again. He's fevers are still spiking. He sleeps most of the time to block out any pain or sick feeling. John brought the playstation last nite and he does play a little. The brothers are here today playing... and fighting.. and getting into mischief, you know the normal everyday things boys do. I'm getting into Kazaa again here in the hospital... I hope I don't crash the computer!! If you don't see my updates, I crashed the system! Everyone is spending the nite tonite, so I'll make a nice dinner and try to be the happy little family we are. Oh I wanted to say thanks to Ralph and Laura for bringing some Adobo by the other day. That was very thoughtful and thanks for taking me and Mom out to dinner. I hope everyone is signing in on the guests book, don't forget. Love Ya Rose
Friday, February 20, 2003 12:15 AM CST
Well, were neutapenic (spelling?)... he started with a bloody nose at 11am and so they ordered Platlett to bring his counts up. He had a bad reaction to the Platletts, he broke out in hives all over, so they gave him some benedryl to stop the itches and calm him down, but of course that took about an hour to take effect, poor guy, he was scared!! I tried to remain calm and keep him from getting too excited so he wouldn't break out anymore... it was a challenge! He finally went to sleep and the storm passed and calm set in the rest of the day and nite. John, Dominic and Johnny are starting baseball, so it keeps them busy, but they do miss me and Nick being home (were gone 4-5 days a week).
Wednesday, February 19, 2003 1:19 PM CST
Attending told me last nite that Nick's culture from Friday had Strepocaccus in it and it was sensitive to a specific antiobiotic. They stopped Vanco/Tobemisen/? and just put him on the one. His fever spicked last nite again and it's down again in the morning!!! I asked the nurse to do further tests on his blood draws, all of which have come back negative since Saturday. Maybe he has a virus? He did some PT this morning but not eating yet.
Tuesday, February 18, 2003 1:53 PM CST
Don't plan too far in advance, never know what will come up!
Friday, 14th-Nick got a infection in the small luman of his Broviac line...started antibiotic's. Minimum of 3 day to go.
Saturday, 15th-Called Joshua and Julia to spend the nite (friday nite) and take to kids to Toy Story on Ice (saturday), poor Nick couldn't go. He was still really sick.
Sunday, 16th-Nick was really tired and grumpy. The steriod (Decatron) really made put him on edge. Called Jacky to see if she wanted to use the tickets we had to go to the play at the church, were still in the hospital. We did however manage to squeez in a barbeque with a family at the Family House. We had to do everything in shifts however, making it a little more complicated than planned.
Monday, 17th-Nick was up a little more and tried to eat some ice cream and jello. He's still sick, but he did watch Jack in the Beanstalk with me.
Tuesday, February 11, 2003 12:42 AM CST
Made breakfast, kids got up, ate and I drove them to school. Gave them a kiss and lunch money for the week and told them I would call them tonite. Called to get a room, there full!! Got packing down to a few luggages w/rollers! Packed, cleaned, packed somemore and cleaned some more. I wanted to leave so we can get out in time to do all the things I have planned for the weekend........Didn't get in a room (5323) until 7:00 pm....12 hrs of rehydration need before they can start chemo. He's feeling fine, eating like a horse!! Unpacked, ate and watched Jackie Chan - Drunken Master.
Monday, February 17, 2003 2:59 PM CST
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