Friday, December 18, 2009

Almost Christmas !!!

Merry Christmas Everyone! It's almost here. We will be very busy this week, but not with shopping and Christmas parties this year... Luke is due for his three-month
(post transplant) total disease evaluation. In other words, making sure the cancer is still gone... also known as tons of tests. One good thing about doing it before the new year is at least we have paid the deductible and co-pays to our insurance for this year!(thanks to all of you who have helped so you!)

We ended up taking the whole family with us to San Francisco on Tuesday. The kids were all very well behaved, but it was a long day. Luke got car sick and was throwing up in the car while we were stuck on the 680 in bad traffic jam, caused by an overturned truck. We had a bit of comic relief when, in total embarrassment, I, with no other option, dumped out Luke's little pink puke tray out my window followed by a motorcycle speeding past, right through the barf. The guy in the truck next to us got a kick out of the whole scenario. He was cracking up giving us the thumbs-up. Anyway, the doctor visits went well. Dr.Dvorak was happy to see Luke (they are Star Wars buddies). Luke introduced Peter as his "baby brother", Dr.Dvorak chuckled a little and glanced back and forth comparing the size of the two boys. Peter is now 45lbs while Luke is weighing in at 41. The ID doctor ended up deciding to keep Luke on the anti-fungal treatments for another 4 weeks. Bummer. But if that's what it takes...that's what it takes.

Wednesday, December 9, 2009

Lung update

Luke's C.T. scan showed the infection is improving!! good news. Thank you Jesus. We are going to UCSF this Tuesday the 15th. We will meet with the bone marrow transplant doctor, Luke will have a T-Cell function test and we will meet with the infectious disease doctor to talk about the future plans regarding the treatment of Luke's lungs. Our oncologist said often times these types of fungal infections can take six months of treatment.

Lukas is doing well this week, we are gearing up for Christmas. We got our first ever artificial Christmas tree (fresh ones can have fungus/mold). The kids enjoyed helping put it together and we got it all decorated last night . Joe said "who else thinks we need some Christmas music on to make this a perfect experience". Everybody said yes, so we turned on the music and chased down Peter and pried the tinsel out of his hands to put it on the tree. Ah...good times...Thank you very much for your prayers, please continue praying with us.~Love Erica

Tuesday, December 1, 2009

December !!

I can't believe it is December already. Luke is now three months post transplant...half way to freedom. In March he will be off isolation !! Yesterday Luke had a follow-up C.T of his lungs and we are praying hard he will not need a lung biopsy. His blood pressure has been good and we are keeping his potassium and magnesium under control (he still hates taking the pills). The new medication he has to be on is worse than I thought it was going to be though. It is just like being on chemo. His appetite has decreased he's been a little tired and his skin is awful dry, cracking and bleeding (even his private areas...poor baby). He just finished two weeks of it and now he has a two week break. That will be the rotation for the next six months. He is going through a little funk about going to the hospital and clinic...he is sort of mad...and sick of it all. We need to have a few more long talks about being a shining light for Jesus. It's a long road to travel, but looking back it seems to have gone by pretty quick, just taking it one day at a time. We will go to UCSF probably on Tuesday to have a check-up with the Bone Marrow Transplant doctors.

I hope you all had a wonderful Thanksgiving. Mike and I made a lovely dinner...we used our china (first time ever!) and the kids made a pumpkin turkey center-piece. We all told the Lord all the things we are thankful for. Luke was thankful God healed Joe's poison oak and for helping him with his tummy bump. We had a great time together :)

Thursday, November 12, 2009

Fat Lip

I followed Luke around like a mother hen yesterday while he rode Joe's scooter. He was having a great little turn and....smack !...he hit his mouth on the handle. He was wearing his mask, so at least it was a clean hit, but his lip is huge. It is never fun to see your kid get hurt, you feel worried and guilty, but when your kid who just had a bone marrow transplant gets hurt, yikes, it's like magnified like 100 times. I was really freaked out. I'm so worried about infection right now and the mouth is so full of germs. I called his oncologist right away to see what I should do and they said "ice it and rinse his mouth every time he eats...that's all you can do".

Today, Luke, Grace, Pete and I left for Sacramento at 7am and we just got home at 1:45 pm. Everything went well. Luke's potassium level is good and his blood pressure was fine. One hour of normal saline and two hours of Amphotericn then more fluid. He is tolerating it good so far:)

We made some friends in San Francisco during Luke's transplant who's daughter Layla was diagnosed with the same cancer as Luke, stage three and everything. She had a relapse nine months after her transplant. They traveled to San Francisco (from Arizona)to have the new tumor removed and now just found out Layla has more cancer on her liver and in her lungs. I am broken hearted for them :(

Tuesday, November 10, 2009

Go Away Infection !!!

Well the decision has finally been made to go back on I.V. anti-fungal medication. Luke will receive a double dose of what he was having before but only two days a week. We went for his first dose today and everything went really well. They wanted to pre-medicate him with benadryl and zofran because the dose increased so much but I opted not to. I guess that was a good choice because he was just fine. No problems what-so-ever ! Yipee. They want to repeat his C.T. scan before Thanksgiving and If they see more infection they will have to do a lung biopsy:( I'm praying hard this will not be the case. Go Away Infection!!

Luke will also be starting a medication called Isotretinoin. This is known to help fast dividing cells quickly mature so if they are cancerous they become benign. He will have to take four pills a day on a two week on two week off schedule for six months. This stuff causes most commonly skin peeling but of course the list of other possible side-effects is quite long. I hate reading all that. I'm just thankful God is in control of all this. Mike had to remind me of this today because I was starting to get depressed and stressed and grumpy...he texted me... "Just don't forget who's in charge of the universe".

Wednesday, October 28, 2009

Radiation Complete !!

Luke wore his UCSF hospital scrubs to his last treatment of radiation today ! It was a good experience all in all. The doctor and nurses were all very friendly and never kept us waiting. Luke's treatments were fast and he had hardly any side-effects, PRAISE GOD. The Grandma's were really wonderful !! Grandma Suzi and Grandma Kay traded off coming over to our house to watch Joe, Grace and Peter. It made it really easy on Luke and I to hurry off to treatments and come right home without having to make any stops. Thanks Grandmas :)

The bad news is....Luke had a follow-up C.T. scan to check the condition of his lungs. His medication was changed to a single anti-fungal medication he has been taking orally at home for two weeks. The C.T revealed the original growths were a bit smaller but there are a few new larger growths. So... the doctors are a little confused right now as to when these new growths occurred. Fungal infections are very dangerous and I'm really praying for God to do another mighty work in Luke's body. I know his power never runs out ! Please pray with us, we are headed to see doctors in San Francisco tomorrow morning.

We watched a documentary on the San Francisco earthquakes last week and I told Mike "We are not going over the bay bridge next time we go to UCSF" and I guess nobody is tomorrow. The news said they had to close it after a cable broke yesterday! Funny.

Wednesday, October 14, 2009


I can't believe it has been two weeks since my last post. Sorry, I haven't been good about keeping you all up to date. Its been a busy time around here. The trips to the hospital to have infusions of anti-fungal medicine stopped! Praise the Lord. Luke's blood pressure was getting high and he was loosing a lot of potassium with that stuff, so I was glad for many reasons to be off of it. They found an oral medicine that is suppose to work four times as well. I hope they are right. We will soon find out when he has his next C.T. scan next week...Praying for healthy lungs.

Friday, Mike and I took Luke to get lined up for his radiation. He got five real tattoos on his tummy and a little mold make of his body so his position is the same every treatment. The first treatment went well yesterday and today was actually pretty fun...after his treatment they let him play with the remote control that makes the machine spin around. It's really neat. When the machine rotates, the floor drops down and lights up! The radiation therapists adore Luke. They watch him on a t.v. screen during his treatments and today he had them all giggling. He was looking at his reflection and making silly faces the whole time.

Lukas has been feeling better everyday, more energy, eating better, and not as sensitive to smells. Then today the smell of dinner started to make him sick, and he was too tired to walk upstairs at bedtime. Bummer. They said to expect side effects similar to those of chemotherapy. He will have a total of twelve radiation treatments, Monday through Friday, weekends off. The last treatment will be on the 28th. He is also still on overnight hydration, they say probably a couple more weeks before we can take him off that. It's not that big of a deal , but he has to get up to potty a lot in the night.

Thursday, September 24, 2009

Discharge Day, HORRAY !!!

I just tucked Luke back into his hospital bed after waking him up from a sound sleep to take his pills. Have you ever had to wake up a five year old to do anything ? let alone take pills...yikes. He has been very upset about the pill taking thing, but yesterday and this morning he took them just like a grown-up, big improvement. I guess I should have had the nurses give them to him early tonight , he has been up walking around the room and standing up to play on the computer today, it doesn't take much to wear him out. Mike is on his way to the hospital. We should be discharged tomorrow afternoon (Just in time for Friday traffic out of the city :( ) Luke is having his picc line put in. This is a substitute for his broviac he had removed a couple of days ago (they were worried it may have been the place the mold was hiding) The picc-line is a I.V that can stay in for about 3 months. Mike and I are also going to learn how administer home hydration and to draw blood from Luke's line.

UPDATE ...The follow-up C.T. scan showed the Fungal Pneumonia was still present so...this means going to Sacramento FIVE days a week for FOUR weeks to have a special medication that will run into his line for about an hour. Then they will check again with another C.T to see our progress. I called Luke's pediatrician in Jackson to see if we could work out something closer to home (waiting for a call back).

I am amazed how time heals. God is so good, Luke hardly remembers how sick he was. His blood-shot eyes are clearing up, mouth almost completely better, and he is only vomiting once or maybe twice a day. He ate a half a banana today (that made me jump for joy..I had to take a picture and text it to Daddy, I was so excited). He has also been snacking on some pretzels and pirate booty. I keep joking with the nurses that we will have to rent a u-haul to move out of here. I am so thankful for all the cards and gifts you all sent. During the time Luke was barely talking he was so sick, we had to move into a new room, I took down all the cards and packed up all our things. Luke looked around and said "I wanna move to our new room looks empty in here". He has really enjoyed all the love you all have shared, the musical cards, the pop-ups, the cute fuzzy animals, the toys and books...he may have forgotten the pain but he will always remember how many people love him...Isn't that cool?

Monday, September 21, 2009

Fundraiser Dinner Oct. 3rd

Come out and join us on October 3rd for great food, tons of prizes, and live music at Preston Castle. If you have not bought your tickets yet, make sure you get them soon, they are going fast! See you all there!

Tuesday, September 15, 2009

In God's waiting room again...

The good news is the transplant of Luke's stem-cells worked !! The new cells en-graphed into his bone marrow and are making an abundance of new good guys. We are praising God Lukas has made it through the worst part of his treatment. He is slowly feeling a bit better, awake more watching some t.v. and today built some Legos! (that's a big deal). His fever is gone! yay! but he is still vomiting, having diarrhea and he has developed a cough. His mouth and lips are healing pretty fast and he has only had two small doses of pain medication today.

The bad news is during the time he was having fevers two of his blood cultures grew a type of slow growing mold. I guess we breath in mold spores all the time but our bodies fight them off, but when your immune suppressed they flourish. They took Luke down to have a C.T scan of his lungs a couple nights ago and they do see some stuff in there. The ear,nose and throat doctors put a camera up his nose twice (not fun), and tomorrow he will have a MRI to examine his sinuses. He is on a couple different anti-fungal meds. and a team of specialists are trying to figure out this whole mold thing, they say they haven't ever seen this before... Hearing doctors say "We haven't ever seen this before...this is extremely rare" is getting pretty common for us. I'm trying not get worried, the doctor said treating this can take several months of IV medication 5 days a week or even surgery to remove it. That made me feel a little sick to my stomach. Lord please have mercy on my baby...I'm praying he does well for his MRI (he will be awake) and that his sinuses are clear and healthy and that the Lord will intervene into the doctors conversations and give them wisdom to see what this really is and how to deal with it.

Friday, September 11, 2009

Mommy's back on duty

I had a great time at home this week loving on my kids. I also got in some cleaning therapy...that always makes me feel better some how. Luke's eyes look terrible (broken blood vessels) but the doctor said that always looks worse than it is. They took an ultrasound of his liver because his bilirubin count is elevated and they said it looks like it is doing okay so far. His gall bladder is a bit mucked up at this point, so they will continue to keep a close eye on him. Lukas has had and continues to have really bad nose bleeds lasting an hour or more at times, usually while he is sitting on the potty. Mike is an amazing Daddy...he was pinching off Lukes bloody nose, cleaning up potty mess and suctioning out his mouth when I got here today...and he had it all under control. Luke was extra brave for Dad this week.
The room is looking"festive"...I guess you might say. We have all the cards you have all sent hanging on the walls, paper chains, snowflakes, paper spiral things Mike made, balloons, it's crazy cool. The child life lady brought in this giant bubble machine today too. It has a projector that shines on the celing colorful moving patterns and the machine itself is a four foot tall plexy glass tube filled with water, floating balls and beads. A pump pushes air bubbles through and lights fade from red to blue to green and then yellow. Pretty phycodelic when your on moraphine I bet!

P.S. A big thank-you to all for the fun mail that has been sent to the hospital (Luke loves it) and to Olivia Crocker for feeding our family so many times...I didnt even have to go grocery shopping while I was home this week! You are all such a blessing to our family :) God is so good to us. ~Love Erica

Tuesday, September 8, 2009

Trading Places

Mike came to switch places with me so I could get some much needed sleep and time spent with Joe,Grace and Peter. 12 days sleeping in a plastic hospital sleep-chair is getting hard on my back. I have talked on the phone with Mike like five times since I have been home. Luke is still having horrible pain in his throat,chest and tummy. He has been utilizing a suction tool to clear mucus and saliva so he doesn't have to swallow (he loves that...really). He has been having platelet transfusions everyday and today he had two because of a nose bleed that lasted over an hour. He is still running a high fever, I guess that is one of the reasons he is going through his platelets so fast. Tomorrow is day 7 since transplant! They say it takes about 7-14 days for new cells to start growing and once that does happen all the owies clear up fast. I hope to see the light at the end of this tunnel soon, it has been a rough ride. Luke has remained sweet through all of this, he knows this is all part of the battle "we're killin' the bad guys" he says. I am so proud of him....Mike just sent me a picture on my cell phone of Luke sitting on the potty with the suction in his mouth...oh, my baby... Lord, get him better fast... this hurts soo bad.

Fundraiser Dinner

Saturday, September 5, 2009

Tuff Stuff

I can't believe it's almost 4 already, the day is going by fast. Luke is sleeping all wrapped up in towels after his bath. I have classical music on the radio, the nurse said its soothing. We had a scary episode earlier, Luke sat up and started coughing and his whole body shook, he stopped breathing for a second and then threw up the lining of his esophagus...of which I know now but at the time I was pushing the nurse button wondering what on earth was coming out of his body. Yucky, sorry if this is too much info, but if you ever have a stem-cell transplant at least you will know what to expect...maybe it's still to much info...well I could go on with more yucky stuff but I won't. For now we are getting one of those push button pain medication things so Luke won't have to wait in pain for a nurse to get him medication. Oh, he just woke up. Better go ~ Erica

Tuesday, September 1, 2009

Luke's Favorites

It's 5:20pm and Mike just called to ask what I needed him to bring tomorrow when he comes with the kids. Luke and I were both taking a I'm awake...but Luke is still sleeping. Luke has been feeling pretty okay. He is on IV nutrition but still is managing to eat some dry frosted flakes...I guess it has paid off depriving my kids of sugar cereal, he was excited I would LET him eat it! They say it helps decrease the soars in the mouth and throat if he continues to eat and drink a little. He is still throwing-up a few times a day...well I think twice today...seems to be getting better, but now it's coming out the other end, if you know what I mean. He has watched 4 Star Wars movies and has been sitting up at times playing on the computer. One of the child life specialist gave him a "About Me" page to fill out and hang up in his room, he answered all the questions without any prompting from anyone. I thought you might like to learn more about Luke too.

My Name is Lukas
I am Five years old
I am in Kindergarten
My favorite movie is, Indiana Jones and Star Wars.
My favorite food is, egg sandwiches.
My favorite type of music is, break dancing music.
My favorite things to do are, playing with my brothers and sister and cousins and playing my game boy DS and Computer.
If I could go anywhere in the world, I would go to New York City or Disneyland or Lego land.
It bothers me when people, don't leave me alone when I want to be left alone.
When I am upset, My Family, helps me to feel better.
Other things I want you to know about me are, I want to tell people about Jesus because he helps me.

Pretty cute... Tomorrow is transplant day !! At about 11am Luke will get back the stem-cells they harvested from him. They will hook him up to the monitors and check his vitals every 5 minutes for about 4 hours, while the cells are infusing. Pray they make their way back to his marrow quickly and start reproducing new healthy cells quickly! They say it takes about 10-14 days for counts to recover during that time most patients need round the clock pain meds. I'm also praying this will not be the case for Luke, I know God has the power, can't hurt to ask. Thank you for reading this and for all your support in prayer and encouragement through the mail. Luke is loving his mail. I will update again soon~Love Erica

Friday, August 28, 2009

Livin' in San Francisco

Well, we are here in the BMT (bone marrow transplant) wing of the University Of California at San Francisco Children's Hospital. Mike, Luke and I arrived on Tuesday afternoon to many nurses all ready for our arrival. We had to go down to radiology for a chest x-ray then Luke got all washed down in the shower. All of his sanitized, packaged clothing and toys were unpacked and we were all set ! The rest of the day they gave Lukas several medications to prepare his body for the high dose chemo. The chemotherapy started Wed. morning. The first of his chemo is of the big side effects of this one is mouth soars, so they ask the patient to use special mouthwash four times a day and keep the mouth cold during the infusion to constrict the blood vessels. Popsicles are not easy to eat first thing in the morning (in San Francisco) Burr..! The other two chemos are VP-16 (aka etoposide) and Carboplatin. These two he has had before in small doses, but for high-dose chemo they run continuous for four days. VP-16 can burn the skin when it is secreted, so that means three baths a day with sterile water and soap. We are staying busy with baths and mouthwash, Luke hates Mommy has to get tough...or beg...sometimes. We have a room with a view of the ocean and a Wii full of games though, that helps. They said we may be moved into a less appealing room at some point so we better enjoy it while we can. Luke and I turned off all the lights in our room last night and held each other while we watched the ships on the water and the twinkling lights of the city...sweet.

Saturday, August 15, 2009

On the up swing !

Mike arrived at the hospital after work yesterday evening with his bag packed to spend the night with Luke. I picked up Joe, Grace and Peter at my Dad and Mom's. As we loaded up into the mini van Peter hit Joe in the eye with his Little mermaid toy and of course there was all kinds of screaming and carrying on. My Dad said "Probably makes you want to go back to the hospital". Everything was fine by the time we got home, a block down the street.

I wanted to say a few Thank yous, first, to our friend Olivia Crocker for all the meals and treats you have been bringing us for the last...I don't know 6 months...we have been doing this now...I lost count of how many meals, we really appreciate your generosity. Also, thank-you to Manny for the Denny's meal you brought us (yummy), and Chris Smylie for the beanie you knit for Luke, he's wearing it right now! (I will try to post a picture soon).

Luke and Mike got news late this afternoon Lukas needed both a platelet transfusion and red blood cell transfusion. He had some benadryl before his platelets and took a nice nap. He is awake now eating goldfish and watching The Iron Giant (Thank you to the Dean's for the new movie) and his red blood cells are all done. Daddy is on his way home. Dr.Yim said he thinks Luke is on the up swing because his white blood cell count is 0.2 ...guess it's better than nothing.

Thursday, August 13, 2009

Tired of this hospital stuff...UGH !!!

Well I guess I wasn't talking to myself. Turns out many people do read this, they just don't post comments. Okay...I feel better now. Except for the fact we just found out one of the first kids Luke met at the hospital just went to heaven this morning. He passed away in his mothers arms. Luke and I talked about it and prayed for his family. Joshie had the same kind of cancer as Luke, which makes the Nelson family's loss really hit home for us.

We have had a busy week. Monday clinic visit, Tuesday blood transfusion, Wednesday Meeting with Radiation Dr. and G-CSF shot at the hospital. Now it's Thursday and Luke woke up with a hurt foot and a fever. He had problems with his right foot hurting after his surgery and a few times since then it has bothered him. This morning however, he wanted me to carry him downstairs because it was hurting him like pokes in the bottom of his foot. His fever was at 101 and he was not very happy about going to the hospital. He had a clinic visit scheduled anyway so I just packed our things, figuring we would end up in the hospital again. we are in 662, whoo, hoo. Luke has spent much of the day with a blazing hot fever in and out of sleep and complaining. He did have a repreive from the fever for a short time he played on the computer and a little x-box, but he was kinda dazed. He is on his second dose of two different antibiotics and Tylenol, but his temperature was still at 102. His ANC is at 0, he had an x-ray of his foot and a CT scan with contrast(had to drink the nasty stuff again) and he still had to have another G-CSF shot to top it off.
We are getting weary, the hospital is getting so familiar there is no excitement anymore. We have played with all their toys, watched all their movies and earned every prize from the prize box. I had to give Luke a couple pep talks today, it's getting hard to cheer him up.
I am praying this is just another virus like the times before. But the fact is, if this is an infection we may be here ten days. Boo Hoo. I just reached over and touched his head and it feels much cooler...Sigh...I'm giving my self a headache. I know it's gonna be okay...calm down Erica. Like I have been telling Luke, we are fighting a battle, we can't give up. The nurse just walked in and took his temperature...99..phew...that's better...keep it up Luke...I mean down. I will try to give everyone an update tomorrow, hopefully I will have to tickle and pry the computer out of a happy little boys hands to do so.

Tuesday, August 11, 2009

Blood Transfusion Today

Went to Clinic yesterday to check Luke's counts and found he needs a hemoglobin transfusion. They let us take him up to the outpatient floor to get a "type and cross" so they could order the blood and have it ready today. Having that done should save us about an hour of waiting! He will also start getting those lovely shots that help his ANC count rise. Gracie has a little cough and a stuffy nose so she has been stuck in her room the past couple of days, I'm praying no one else picks up her cold. I'm starting to wonder if I am boring all of you with my long winded post's, maybe I should be more short and to the point. Nobody is posting comments anymore. lol. ~Erica

Thursday, August 6, 2009

Coming Soon~Transplant Date

Luke just finished his favorite "green juice" it's called greens to go, a veggie drink mix, and he ate two crackers. I think that will be all I will be able to get him to eat for lunch. He said "mommy, you know that water that comes out from under you tongue? mine tastes funny". The cytoxan is known to cause a metallic taste in the mouth. I got him some fruity gum, that seems to help.

We are scheduled for Aug.19-20 to have some tests at UCSF to prepare for Stem-Cell Transplant on Aug.24 ish. Of course it depends on his ANC count and all his scans will have to be done again. Mike and I are praying this will happen in God's perfect timing. The number of tumor cells in Luke's body is unknown to us, but The Lord knows every cell in his body, we must rely on Him.

Tuesday, August 4, 2009

Home sweet hospital :)

We're back. Five more days of chemo. Luke is feeling a little grumpy and sick to his stomach. Praying God is continuing to rid his body of this nasty cancer. Good nurse...bad roommate...I guess that's better than the other way around !

Saturday, July 25, 2009

On the THIRD day of stem cell harvest

We are just about to complete the third day of harvesting stem-cells. Luke's bone marrow was just not ready to give us enough cells so the doctors decided to keep us overnight to try again on Friday. They said sometimes a patients bone marrow just doesn't release as many cells as others, but they do have other options, including continuing aphresis or going in and aspirating the cells out of the bone marrow. Well, Friday's treatment produced a ton more stem-cells but it still was not quite as much as they wanted so we decided to try one more time. Regardless of the the results we will go home confident we have plenty of those precious little stem-cells. Luke is doing fine...he will be really glad to get home to his siblings and his own bed and so will Dad and Mom. The femoral line they put in his groin will soon come out and we will be on our way home..Yippee.. By the way, Luke was once again a star patient and the placement of the line went beautifully.

Wednesday, July 22, 2009

Stem-Cell Harvest Tomorrow

Fever is gone, blood cultures are clear. Luke's ANC is up to 675 today! We get to go home after he is done with his last round of antibiotics,another shot, and one more platelet transfusion. I will never again underestimate the importance of giving blood. I had never realized how much Cancer kids need, not to mention all the other illnesses people need blood transfusions for, wow.

We are off to San Francisco at about 4am. Luke will have a femoral line put in for the harvest at about 7am, please pray he is able to relax and allow the placement of the line to go smoothly. A child life specialist told me she has heard that it's not fun at all. She also reminded us to bring things he can do laying down. I guess he will have to lie flat for 4-5 hours, or maybe longer if they need to do a second day of harvest. Let me know if you think of anything creative he can do to pass the time.

God is with us every moment, He amazes me everyday.

Monday, July 20, 2009

In the hospital with a fever

Luke's ANC was at zero on Friday, Dr.Yim said "have your bags packed and be ready to go to the hospital if Lukas has any fevers or pain". Well...Sunday evening at dinner he was acting pretty tired and said he was dizzy and his tummy hurt. He had a fever of 101, then I checked again with another thermometer and it was 102. By the time we checked in at the hospital his fever was down to 99.9, praise God, but it continued to hang-on around or below 101. They drew up blood cultures and started him on antibiotics. When you don't have white blood cells to fight for you the situation can get bad fast. Luke's CBC came back at about 9pm and he needed a platelet and hemoglobin transfusion. I found it interesting to learn when they separate blood the platelets are yellow! It took one hour to transfuse the platelets and four hours for the hemoglobin. Luke is grabbing my arm now trying to get to the computer to play games, he's feeling great and his fever is gone. Now we sit and wait for the blood cultures. His stem-cell harvest will have to be postponed until his counts have recovered. One good thing to come from this, at least from my perspective...the nurse gave Luke his shot last night...not Mommy...phew.

Thursday, July 16, 2009


We received a box in the mail today, boxes in the mail are usually something to get excited about, but not this time. Inside the box was ice cold syringes...needles, filled with a medication called Nupogeon or also called G-CSF. It will help encourage the release of Luke's stem-cells for collection on Tuesday. He will have one shot every evening, given by Mom and Dad. The stem-cells will be harvested at the University of San Francisco Children's Hospital. It works a lot like Dialysis. His blood will be circulated through a machine that collects his stem-cells, or parent-cells and then returned to his body over the course of a few hours. Unfortunately they will not be able to utilize his broviac for this procedure because of the blood volume passing through the tubes is too great, so Luke will have to have a larger line put in his groin area prior to the procedure. Please pray for strength for Luke this week, he's in for a lot of pokes, poor baby.

Friday, July 10, 2009

Luke slept till almost 9:30 this morning. I was a little worried he was going to wake up feeling wiped out, but no, he is feeling just fine. He is happy with his new Lego's Auntie Kim and Sam brought him. He said "pirate's are trying to steel rubies and a guy got stabbed and his legs were chopped off!" Cancer is no fun, but we are doing our best to have fun anyway. I think the next time the insurance lady calls I'm gonna have to let it go to voicemail, she got me all stressed out about record keeping and money this morning. Just two of the things I don't want to think about right now... I would rather play pirates with my boy.

Wednesday, July 8, 2009

5 days of Chemo

Yesterday Luke had a C.T. scan and a full body bone scan, he had to lie completely still for 45 min. Mike and I sat and watched in amazement. I'm not sure I could have done what he did. The tech. said he was the best patient he'd ever had. We finally got to get him something to eat at 2pm then we headed up to the 6th floor to start 5 days of chemo. Another million questions to go over with Dr.Hsu and a few hours of pre-hydration and Luke's chemo finally started at 9:30pm. He was sound asleep. He woke up this morning feeling great, ate scrambled eggs and a few Cheerios. P.S. Luke's bone marrow is healthy! GOD is GOOD !!

Wednesday, July 1, 2009

More Chemo, Stem-Cell Transplant, and Radiation

Mike, Luke and I went to the clinic yesterday afternoon for a post surgery check-up and to review the pathology report. Now that the entire tumor has been examined the classification changed from what we previously thought was favorable histology, to un-favorable histology. This means Luke is going to need some high doses of chemotherapy to make absolutely sure there aren't anymore neuroblastoma cells in his body. With high dose chemo they will send us to San Francisco to have Luke's stem-cells harvested, then after chemo they replace his stem-cells to help him recover from the treatment. This will be followed by radiation treatment in Sacramento, to ensure all those bad guys are gone. He will then have to take pills for six months. This was disappointing news, we feel, emotionally, very much the same as we did when he was first diagnosed. Tomorrow they will give Luke a bone marrow aspiration and Thursday he will have another C.T. scan and bone scan to make sure all are still cancer free.
Hear my cry, O God; listen to my prayer. From the ends of the Earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, have mercy on my Lukas and heal him. -Erica

Wednesday, June 24, 2009

Home At Last !!

It's good to be home, although as I was getting on the elevator on the sixth floor I glanced down the hall and got a weird familiar feeling, I'm getting to know the place pretty well. Luke is really glad to be home too. He is improving daily, walking better, eating better, and needing fewer doses of Tylenol. We are scheduled to go back to the doctors on Tuesday.

Saturday, June 20, 2009

Post Surgery Update...Saturday

Recovery...such a soft word for such a hard thing. It has been a constant battle to keep Luke's pain under control, I have never been such a basket case. Lukas was crying to go home and missing his brothers and sister sooo bad, his body has been hurting more than I can even imagine. He was refusing morphine, saying "It dooossnnn't work!" so we got him on some other pain medicine that seems to be much better. He has really bad swelling in his tummy. His hemoglobin dropped and he had a blood transfusion, then the next lab work showed a drop again. I was in a panic, thinking he was having internal bleeding that would require another surgery. The doctor had them draw labs again to make absolutely sure and by the grace of God his hemoglobin was back up. That made the "worst days of my life" list.
Mike spent the night at the hospital last night so I could come home and sleep in my bed and wash clothes. I called him this morning a he said "Luke got to eat Cheerios's!" This it the first time he has eaten since Monday morning before going to the hospital. Luke is also getting a visit from the Star Wars characters today! We are praying for more good days to come, hoping to have Luke standing up soon maybe taking a few steps...That will make the "happiest days of my life" list.

Wednesday, June 17, 2009

Bye Bye Tummy Bump !!!

WOW...Everything that has happened in the last few days just went rushing through my head as I stare at the blank screen wondering what to type. All I can think is PRAISE GOD..PRAISE GOD..PRAISE GOD..Thank You LORD. Luke is in Pediatric Intensive Care (PICU) getting lots of rest, and we are silently celebrating the entire removal of the big pink blob from his abdomen.
Our prayer was for the tumor to be removed totally in one big hunk, with minimal blood loss and no damage to his surrounding organs and that is just what God did! How is Thank you a big enough word in a time like this?
Luke's surgeon, Dr.Lisa Abramson, is beaming, she said, "The surgery went perfectly, we identified the feeding blood vessels as we went along... we didn't even have to give him a blood transfusion."
Lukas already has the tube out of his nose... and you probably guessed it... he ate a half of a Popsicle already! His pain has been pretty well controlled, a nurse tried to roll him onto his side yesterday and he reached up and pinched her! That was pretty funny.
Now the tumor is off to pathology. We should know the weight of it, and all the info about the cells within it, in about a week. We are praying for an infection free recovery and that this will be the end of treatment for Luke. If the cells are fully matured, essentially dead, he will not need any more chemotherapy! That would be a dream come true! A big giant THANK YOU, friends and family, for all your prayers and support. We love you.

Friday, June 12, 2009

Surgery Date Changed

I Got a call yesterday from Luke's doctors. Apparently their is a chemical in Luke's urine that comes from the ganglioneuroblastoma. The numbers were slightly elevated, not what we want to see. They thought there should be no reason to wait any longer than we have to, to remove this tumor. The Surgeon changed her schedule and gave up her day off, but is glad to do it for Luke! (we really like her a lot). So, my stomach hurts and my heart is swollen, but this is God's plan, not mine, may his will be done. Luke is comfortable with the whole idea, he knows all about the plan. His biggest worry was the tube in his nose he heard Dr. Abramson talking about. He wondered what big brother Joe would say about that when he got home. He calmed down fast when I told him he didn't have keep the tube in. "The doctors will take it out as soon as you start eating" I said. He said "I will eat anything I have to, to get the tube out" ...a good incentive I guess.

Admit to Sutter Memorial- Monday June 15
Surgery- Tuesday June 16

Wednesday, June 10, 2009

The Good News and The Bad News

Yesterday Mike and I met with Luke's surgeon Dr. Abramson. The good news is she is ready to remove Luke's tumor, the bad news is the tumor is still the same size...actually a few millimeters larger than at diagnosis. This was very disappointing news because I really felt from the feel of his tummy the tumor was changing. They warned us from the beginning this may be the case (little to no shrinkage), but they had to try chemotherapy before moving forward with surgery. The surgery will be 6-8 hours long...I'm trying to hold back tears just writing this...I'm so glad he is having it removed but so wishing I could go through it for him.

Today Lukas had his MIBG scan. He had to have the sleepy medicine again. He was goofing around messing up my hair, right up until he fell asleep. He's such a champ. Or as Mike called him, a superstar!

Admit to the hospital -Monday, June 22
Surgery -Tuesday, June 23

Monday, June 8, 2009

Remove the "Tummy Bump" ???

Mike, Luke and I are going to the Clinic tomorrow to meet with Luke's Oncologists and his Surgeon. After reviewing Luke's C.T. Scan they believe it is time to remove the tummy bump !!! Yippee!!! We will get more info tomorrow to share with all of you, our faithful prayer warriors ! Isn't God AWESOME !!

Tuesday, June 2, 2009


Clinic visit this Monday revealed Luke's counts are still going down, his ANC is 400 and his platelets are really low again. We are watching for any signs that he may need a transfusion. He has a C.T.Scan scheduled for Thursday June 4th. Next week he has a MIBG scan with the sleepy medicine. The worst is he has to fast before the tests and for some reason they always schedule them for the afternoon...drives me crazy! Luke didn't complain a bit last time though, he's much stronger than I am, thank God.

Luke is amazing...wakes up every morning ready for cereal..plays all day like there's nothing wrong ...prays every night that God will take away his tummy bump...and knows He will !

Thursday, May 21, 2009

4th cycle of chemo...hopefully last !!

Going home today! yay! Luke had a little nausea this time but not enough to keep him from eating, 2 corn dogs, 2 piles of french fries, Cheerios, half a banana, rice crispies, half a tuna sandwich, a cookie, yogurt, chips, and the top of a blueberry muffin!! Pretty good for 2 days in the hospital on chemo! Although there is not too many veggies in that list; I guess we will have to work on that when we get home.

I'm continuing to pray this will be Luke's final chemo treatment. That God will give the doctors wisdom, that he will prepare Luke's body for surgery, that his tumor will be easy for the surgeon to remove and that she will remove it entirely, so that he requires no more treatment. Thank you for praying with us, Love Erica

Friday, May 15, 2009

We received a care package from "The Keaton Raphael Memorial". Keaton was a five year old that died of Neuroblastoma in 1998. His parents founded the memorial to give comfort to family's dealing with cancer. They sent this sun hat, bear and personalized blanket for Luke, along with goodies for his brothers and sister. They also sent five hundred dollars to help with medical expenses! What a wonderful surprise that was. A big THANK YOU to"The Keaton Raphael Memorial" from the Finches!! What a blessing :)

Wednesday, May 13, 2009

Thanks to all for your encouraging posts! We love you!

The doctor said he would loose the rest of his hair after his second cycle of chemo. When all this started I told Luke he was going to be bald like Daddy, he replied "No I'm not". I am starting to believe he was right. He still has hair!!!

My prayer was answered at the hospital last time and he woke-up feeling fine. He has been feeling great over all. We are scheduled for round 4 on Tue May, 19th. A couple of weeks after treatment we will enter what is called "observation" phase of his treatment. He will have another CT scan and a MIBG scan. The Oncologists and Surgeon will examine his scans and decide weather Luke is ready for surgery. My prayer is for Luke's Surgeon, Dr.Lisa Abramson, to get the entire tumor, without missing a single cell. Then maybe he will not need any more chemo afterwards! Thank you all for praying with us :) -Erica

Wednesday, April 29, 2009

Feelin' a little sickie

Yesterday evening I went into the playroom to get a movie to watch and I saw "Isaiah Oates" on the list, he is Our Assistant Pastor's nephew. I had heard all about him but had never met him or his parents, so I went down and introduced myself. What a beautiful family. I went back to my room and had a bit of a rough night listening to Frankie cry on the other side of the curtain, but Luke was able to sleep through it all ! We ended up moving into a new room at six this morning (Frankie and his Dad had a bad cough we didn't want to catch) and guess where they moved us?...yep...our new roomie is Isaiah. He is six years old, Luke thinks he's pretty cool because he knew about a fun new Internet game.

Luke was feeling dizzy and his head hurt this afternoon. When his dinner came he almost threw-up at the smell. I had to remove it from the room quickly and while I was in the kitchen wrapping up his dinner he fell asleep. I'm hoping he will feel better when he wakes up.

Tuesday, April 28, 2009

Round 3

Here we are at the hospital again...Luke's ANC is at 2200. His Chemo should start at about 4pm. We are rooming with a little 3 year old named Frankie. He is one of six children and was recently diagnosed with Leukemia. Frankie has a 10year old brother named Tony (our new friend). Tony has been going back and forth to the playroom to fetch Luke x-box games! Sweet boy.

Luke's hair is all over his pillow. It's coming out much faster now. Before we left home he was following Aunt Cherie's suggestion and sprinkling his hair in the bushes for the birds to use for their nests'...he got-a-kick out of that idea!! :)

Monday, April 20, 2009

Little Wish

Your prayers are effective. Thank you all for standing by us. The Lord brought up Luke's ANC to 315 by Thursday morning and the Doc. said we could go home.! They think he is now on the up-swing so we even got a free pass on clinic next week, we don't have to go back until Luke's third round of Chemotherapy on Tuesday the 28th. Yay! We are keeping a watchful eye out for signs of his platelet levels getting too low (they were trending down during our hospital stay). He has a few dark bruises on his legs (which is one of the symptoms). If he gets too low, he may need to have a blood platelet transfusion.

All the kids are feeling much better now, the coughs are subsiding; but of course not until Mom was infected too. Daddy is taking somewhere around 20 vitamin C's a day (he thinks he's in the clear) .

On Thursday morning before being discharged home Luke got a fun surprise. A "Little Wish" from the Make a Wish Foundation. One of the Child Life Specialists' came in with a gift and her camera. He opened it and was overflowing with joy. It was a "Nintendo Game Boy DS"!!!! He was so excited to get home and show his brothers and sister. I told him many kind people from all over, give money to buy kids in the hospital special toys to make them feel better, Luke replied "and they waste all the money on a DS for me !?"

Wednesday, April 15, 2009

Monday night was a little stressful for Mommy. Luke's fever got up to 102.5 and he was really weak and tired. It's always hard to see your child with a fever but even more scary when you know his defences are depleted. Thank you Lord for your comfort, and healing! Luke is feeling well today, no more fevers! His ANC in now at 88. We can go home when he reaches 250. Sounds like a long way to go, but they tell me it can leap quite a lot in a short period of time. Joe, Grace and Peter are all being medicated at home, please pray they will get better quickly!!


Monday, April 13, 2009

Back to the hospital

Just wanted to let everybody know that Luke had to be admitted to the hospital today at about 4:00pm. He has had a cold for the last couple days that he picked up from his siblings and the clinic wanted us to come in and have his ANC checked. His count was at zero and he has been running a slight fever, so they had him admitted to start a course of antibiotics via IV. We are currently waiting for a lab culture to come back to see if there is a virus or bacteria that they need to treat specifically out side of the general antibiotics that he is receiving currently. If this is the case they said to expect a seven to ten day hospital stay. If he only needs the general antibiotics, then we should expect a 48hr stay. Other than this he has been fairing pretty well. He has been in good spirits and is still acting like a normal five year old. He just tires out a little quicker than the rest. Thanks for your continued prayers and support.

-The Finches

Wednesday, April 8, 2009

2 Down, 2 To Go

God surpassed all of our expectations once again ! Luke's ANC went from 400 to 1400 this week so they admitted us into the hospital for his second of four cycles of Chemotherapy yesterday April 7. The doctor said this will be the hardest of the four cycles. He has been a champ though. After about five hours of pre-hydration, he had one hour of Carboplatin, one hour of Etopiside and 15 min of Doxo followed up by hydration until we were discharged this afternoon. One of the medications caused Luke to pee bright orange, which he thought was hilarious ! He woke up this morning with some aches and pains, but got up and dressed and was in the playroom feeling fine soon after. Daddy buckled him into his car seat for the trip home, and as we pulled out of the hospital parking lot he said "That was a nice sleepover!"

Wednesday, April 1, 2009

Chemo Postponed

Luke's ANC count was down to 400. He is pretty much house bound for now. We have to watch him close for any signs of fever of 100.5 or above. His ANC has to be at least 550 to start chemo, so we were sent home to wait. They assume his ANC needs a little more recovery time so they scheduled his chemo for next Tuesday April 7th. I guess this is a fairly common occurrence but a little scary for us since he is so vulnerable to infection. Please pray his counts will rise quickly. He is still feeling fine, despite having so few white blood cells... Praise God !

Saturday, March 28, 2009

Bye Bye Luke's Hair

We had a fun day outdoors today. Grace had her first softball game (she's the cutest one on the team!) and Mike and I played in a softball game for our church league. We we're all winners! On the ride home Luke ran his fingers through his hair and his hand was covered in hair. I guess its time for a buzz !
Luke is feeling good, tired at times, but eating well and playing well. His second round of Chemo starts on Tuesday. We check in at the clinic at 10:30am and go straight up to the sixth floor for two days this time.

Friday, March 20, 2009

Clinic Visits

Luke is feeling good and eating well. He has been driving me crazy this week asking to play video games all the time! I guess he is developing bad habits from his hospital stays....oh well...if that is the worse side-effect we've got it made !!
Every Monday and Thursday we are scheduled to go to the Oncology clinic for check-ups and blood work. This weeks appointments went well. Luke's ANC ( absolute neutrophil count) is the most important number to monitor, the neutrophils are the bactiera fighting white blood cells. These white blood cells are on a steady decline. When they reach there lowest ( between 7 and 10 days after treatment) he is most prone to infection. The counts are expected to rise back to almost normal before the next treatment. He was at 2300 on Monday and by Thursday he was 1000. The Oncologist say if the ANC count gets at or below 500 they routinely admit the patient into the hospital until their count rises.

Cycle number two starts on March 31, the medication is a little different this time, we will stay at the hospital 2-3 days. Thank you for your continued prayer :) Mike and I really feel God is at work in Luke's tummy !!

Wednesday, March 11, 2009

March 11,2009

Well, where should I start ? Yesterday went just fine. After check-in to the hospital (we got a bed by the window!) the nurse started Luke on fluids because they need four hours of hydration before starting Chemo. Then Luke climbed into a little go-cart and our Nurse, Mom and Dad all went for a trip to the audioligist. One of the side-effects of one of the types of Chemo is hearing loss (high pitched sounds... like Mom's voice, LOL). That was fun, we all got into a sound proof booth, Luke had on headphones and everytime he heard a sound he put a plastic dinosaur in a cup. He passed with flying colors, so back to our room. Daddy went home later in the afternoon and the first Chemo IV bag hung high on what Luke calls his "Buddy"(the IV cart). That was non-eventfull, he felt fine over the next hour, then came the second type of Chemo, with the same results! Good news, no nausea or anything:)
This morning Luke watched cartoons and ate cherrio's with rasins and bannanas. He had to go pee-pee a lot with all those fluids pumping in ! Then at lunch we has visitors ! Auntie Jennifer,Veda,Joseph and Gracie came full of smiles out of the elevator. After we ate our lunch we all headed down the hall to the playroom. Luke pushed his "buddy"swiftly down the hall, excited to show the kids his special place to play at the hospital. And play they did. I had never seen the playroom get so much use! We had out games, tractors, blocks, puzzles, all kinds of stuff, Lots of fun. This session of Chemo was only one medication, it ran for one hour and that was it. Luke didn't want dinner at all. He didn't eat any of his lunch either. The nurse said that's pretty tipical. He got a little fiesty near bed-time when I changed his bandages on his broviac. It was red and irritated the nurse said he might be allergic to the tape or cleaning solution we are using. We tried a different type, now we will pray it looks better in the morning.

Tuesday, March 10, 2009

First round of treatment

Last week we had our first meeting with the oncology department at their children’s clinic. Luke’s diagnosis for the most part is the same as we’ve known already. He has ganglioneuroblastoma, stage three, intermediate risk. The doctors showed us a big flow chart that basically describes protocol for treatment based on factors that have come about with the results of his tests. So at this point his basic treatment will be four cycles of chemotherapy, followed by a revaluation of the tumor. The cycle is roughly 30 days. The first cycle starts today. It will be three treatments over three days then, 22 to 28 days off. Luke only has to have the medicine run through his IV four an hour. He will most likely have to have two trips a week to the hospital to have his blood count taken.
The problem in diagnosing his tumor lies in the fact that it is a mix of cancer and benign cells. They’re not able to tell us a percentage, like 30% benign and 70% cancer. Chemotherapy shrinks cancer cells but not benign cells. So we will have to wait and see how much of the tumor shrinks. This will be followed by surgery to remove what’s left.
Sorry if the blog seems to jump around from topic to topic, or if there are still some unanswered questions. We have received so much info over the past month, that at times it is hard to keep it all straight. Also, we apologize for the speed of getting info up on this blog. Sometimes it seems that the days just aren’t long enough to finish everything, but be patient we will keep it updated. If anyone has any questions in particular or something that does not sound right feel free to ask in the comments. We will try to answer it the best we can. Or if you just have any random things you would like to ask of Luke, I’m sure he will have an answer for you! J Once again we want to thank everybody for their faithful prayers for Luke and for our family.

Wednesday, March 4, 2009

MIBG scan

Luke had a MIBG (iodine meta-iodobenzylguanidine) scan today.

His test went well, about the same as the bone scan. He woke up and remembered the nurse had Popsicles :) Tomorrow we will meet with the Oncologist. Hopefully we will have more news soon!


Monday, March 2, 2009

Praise The Lord !!

Today we got a wonderful phone call. The bone scan revealed Luke has healthy bones! All the kids cheered when I told them the news !!

Saturday, February 28, 2009

Test Complete !

Another lovely day at the hospital. All the nurses think Lukas is the most easy-going patient they have ever seen. We are grateful for the Broviac for tests like these (no pokes!) so Luke has no reason to be nervous at all. He took a little nap and woke up wanting a Popsicle. The sleepy medicine had no side effects, so after the test we went to visit Uncle Greg at Whole Foods. I told Luke he could pick whatever he wanted to eat. He choose a big slice of cheese pizza, orange juice and a peanut butter cookie.
The type of tumor Lukas has is quite rare and varies greatly from case to case. The Oncologist explained the need for all these tests as being like the pieces of a puzzle. Before they can give us a comprehensive treatment plan they need every single puzzle piece in place. The Lord has been so patient with us, now we must wait on the Lord. I keep thinking of all the ways he has made this ordeal easier on us. The kids are home schooled and finished many subjects early. Our home school CT even has a son who had a neuroblastoma 13years ago, she is fully understanding and encouraging us with both her experience and sharing scripture with us. Mike is self employed and able to take the time to be at the hospital. Our family is all so close to us and available to help us sooo much. The many friends and family in Christ who are lifting up Lukas in prayer.... the list goes on. Luke's next test will be Wednesday the 4th of March.

Thursday, February 26, 2009

Bone Scan Tomorrow

Today Lukas rode his bike and enjoyed the sunshine (we all did) ! We got our first shipment of Broviac supplies and changed his bandages and caps. It went much better than the first dressing change at the hospital. This time was tear free! yay! The anesthesiologist just called to confirm and give eating instructions for Luke's bone scan tomorrow. We are to arrive at Sutter Memorial at 10:30am for his injection, then we will wait two hours. Luke will sleep through the one hour scan while Mom and Dad will be praying for perfectly clean bones !

Saturday, February 21, 2009

Home Care 101

Kids are amazing ! We took apart the bunk beds and got Luke a step stool, climbing into bed proved to be a bit painful, but other than that he's been feeling pretty good. We are waiting to hear from the Oncologist office. They have a few more tests including a "bone scan" they need to do. They need to give Lukas the "sleepy medicine" again for that. At least they can do that through his broviac so they don't have to poke him! The nurses said we can expect to get a big binder detailing his treatment plan. We have a lot to learn.

Every day his broviac lines need to be "flushed", which means, injected with an anti-coagulant called heparin(to keep the lines from getting blood clots) Today I flushed his broviac lines all by myself! A little scary, but I think it will get easier after a few days.

Friday, February 20, 2009

Luke's Home!

Still waiting

This Friday morning still finds us waiting. It seems to be the main theme of this experience! We are still hoping to come home today, it just depends on Luke's condition. Luke was up and around yesterday, the first time out of bed was a little hard for him. He was also a little concerned when while going "#2" , the reality of a tube sticking out of his chest struck him and he wanted it out. The evening proved to be better for him and he was up in the playroom watching the kissing fish and played a game of Battle Ship. Dad lost :( Joe, Grace, & Peter have been spending the week with Grandma Suzie. I am sure they are having the best week of anyone! So we will continue to post updates, and thank you all for continuing to hold up our family in prayer.

Thursday, February 19, 2009

Thursday Morning

No news at this hour. Today we are supposed to learn how to use the broviac, change the caps and flush the lines. There is a planned visit by Grandma Kay and Uncle Vernon. We are most likely going to be released before the weekend, yay! Due to the length of time it takes to get the pathology reports to come back from all over the country, will will not know the protocol of treatment until next week sometime. So until then the hospital said we might as well be at home. (of course. It doesn't take a doctor to know that!)

Wednesday, February 18, 2009

Ganglioneuroblastoma, say that ten times fast.

Today we had the biopsy and the surgery went well. Luke is recovering and will hopefully be home sometime within the week. Not so soon for the pathology reports. Some in-house, some sent out and some from the national cancer institute and data base. We were told probably early next week. We were told he has a ganglioneuroblastoma type tumor. Not the best and not the worst. Basically still a mystery. From what I’ve read, it affects about 5 cases out of 1,000,000 children. I;ve pasted some discriptions of the tumor here, kind of vague on treatment due to needing the pathology reports back. Chemotherapy it turns out is very specialized and the protocol to be followed needs to be based on the exact cell type that the tumor turns out to be. Luke also had a broviac inserted today, so no more “pokes”
Again, thanks for your prayers for this strong little boy.

Ganglioneuromas and ganglioneuroblastomas are tumors of the sympathetic nervous system that originate from neural crest sympathogonia, which are completely undifferentiated cells of the sympathetic nervous system. Along with neuroblastomas, ganglioneuromas and ganglioneuroblastomas are collectively known as neuroblastic or neurogenic tumors.1
Most frequently occurring in the abdomen, these tumors can grow wherever sympathetic nervous tissue is found. Common locations for ganglioneuromas and ganglioneuroblastomas include the adrenal gland, paraspinal retroperitoneum (sympathetic ganglia), posterior mediastinum, head, and neck; it is uncommon to find them in the urinary bladder, bowel wall, abdominal wall, and gallbladder.

Ganglioneuroblastomas (Luke’s diagnosis at this point)
Ganglioneuroblastomas are a mix of malignant neuroblastoma and benign ganglioneuroma tissues; they are sometimes called transitional tumors. These lesions also originate from sympathetic cells. Histologically, they are considered malignant because they contain primitive neuroblasts along with mature ganglion cells.
Ganglioneuroblastomas have a propensity for secreting catecholamines; approximately 90-95% actively secrete vanillylmandelic acid (VMA) and homovanillic acid (HVA). Catecholamine toxicity rarely results. HVA tends to be secreted by more mature and differentiated tumors, whereas VMA is usually a product of less differentiated tumors. In fact, the ratio of VMA to HVA secreted can be used as a prognostic factor to assess tumor maturity. In addition, more mature tumors may contain vasoactive intestinal peptide (VIP)–producing ganglion cells. Elevated levels of VIP can produce diarrhea, hypokalemia, and acidosis.
Despite these possible comorbidities, the prognosis for patients with ganglioneuroblastomas is relatively good. These tumors may spontaneously regress or mature. Maturation occurs at an unknown rate that eventually stops at the ganglioneuroma stage. In fact, all ganglioneuromas are thought to have once been, at an earlier stage of their development, ganglioneuroblastomas or neuroblastomas. Regression occurs in 1-2% of tumors; the cause of ganglioneuroblastoma regression is unknown.
Surrounded by Mom,Dad,grandpa Mike,Grandma Suzie,Grandma Kay,and Auntie Kim, Luke just left for the OR. Hopefully we will have some news in three or four hours.

Tuesday, February 17, 2009

Checkin' in

We have made it to the hospital and have started getting settled in. Luke is watching Stuart Little, waiting to have an IV put in at any minute. :( Surgery still schedueled for 7:30.

News, not much,but better than whats on CNN.

Off to the hospital tonight to check in for the scheduled seven thirty AM surgery. Should be nothing going on really tonight except checking into the room and getting an IV started. We should have a lot more news by afternoon tomorrow. We are as anxious for some news as you all, and will continue posting updates as they come in. Thank you everyone for yours prayers for Luke. We are truly blessed by God.

Saturday, February 14, 2009

First update

This has all happened very fast, two days, starting with a routine five year old check up. Erica took Luke to the doctor for his five year old kindergarten check up on Thursday, where she asked the doctor about his tummy because he always seems gassy. After feeling his stomach, said she wanted us to go downstairs for an X-Ray to see if anything was wrong. We did, and after the radiologist read the X-Ray he sent us for a CT scan which lead us to a trip to Sutter Memorial Hospital to be admitted. Originally the doctors thought it was a Wilms' tumor, a cancerous tumor of the kidneys, until they did further tests. After another CT Scan with contrast injected into Luke, they now know it is not in his kidney, but they are baffled as to what kind of tumor it is or where its coming from. All his organs appear to be normal at this time. It is very large, filling about a quarter of his right abdominal cavity. It starts under his lung and goes down to his pelvis. Organs that should occupy this space have been pushed over to his left side.
We were allowed to come home last night. We will be admitted back in on Tuesday (17 February), afternoon/eve. to prepare for a surgical tissue sampling on Wed. morning. He has been wonderful through all the tests (except the I.V. was really hard). If the mass is determined to be cancerous at the time of operation, a port for medication injections will be inserted during the surgery on Wednesday.
We have never been though any thing like this in our lives and are relying on God to take care of his son. We know it is all in his hands. Our God is an AWESOME God. We appreciate the out pouring of people wanting to help out our family in some capacity. We are especially blessed to have close family that has been able to take care of a lot for us already. All that we can ask of everyone at this time of many questions & few details is to devote yourselves to prayer as God, not us has commanded. Colossians 4:2, 1Thessalonians 5:16 James5:13.
Thank you all and we will continue to update this blog regularly.
-Mike & Erica