For a Cause!

This is my favorite picture of Lukas, it was last summer!!! Isn't he just a doll!!

I usually don't write my feelings on here, but this particular thing has become so close to me and my heart, i thought i would share a little.

My Brother and his wife Heather have always been into the Relay for Life, for the American Cancer Society. This year has become really close since Lukas has cancer. He is going to be the honorary chair at the relay this year. Anyway, his big brother (at the age of 2) is going to be a team captain and we are on his team. I have a goal to raise $100 and I'm asking for all of your support. I know a lot of you are poor just like me, but just think what even $5 would do. Everything is going to the American Cancer Society and hopefully soon there will be a cure for it. This has been the hardest thing for our family to go through, I cant even imagine how Kurt and Heather feel. Ive just been crying a lot lately, I tend to start and then just make myself stop. Its just finally really hitting home I guess. Anyway, if any of you would like to donate please let me know. Anything would help, even just a $1. Also they are wanting 100 survivors so if you are one, or know of one let me know, or have them contact me, we would love for them to come to the relay and join in our survivor ceremony! We love Lukas and hope that none of our other little loved ones has to ever hear those words, you have cancer.

The Plan for the next couple of Weeks!

Ok, lots of info and lots of new dates to tell you about...

Clinic went well today. Lukas counts were high enough that he didn't need a transfusion today. He isn't eating or drinking much of anything so they accessed his port and home health will be coming out tonight to start giving him IV fluids at night. Don't know for how long. His nose is also bleeding a lot but since his platelets are up, our story is that the tumor is dying and draining out! Dr. Howery liked that story.

Thursday we go in for outpatient surgery to have Lukas apheresis line put in (another sort of central line with two access points) for his stem cell harvest-it will be removed later on. Don't know what time his surgery will be, but we will have to be there at least 2 hours earlier so they can run labs and do a platelets transfusion (doc thinks they will be low enough by then to need it) before the surgery... probably a good idea anyway to make sure he clots well during the surgery too.

Friday-Wednesday 7:45am clinic visits for labs. They will be checking his blood counts and also his stem cell counts. They have to harvest his stem cells at just the right time so they will be monitoring him everyday until he's ready. His white counts need to be over 1000 and his stem cells have to be over 10 before they start the harvest.

He will have the Peripheral Stem Cell harvest (taking the stem cells from his blood). It could take anywhere from 1-3 days to collect enough. That will be inpatient. You can search www.cancer.gov to find a slide show of how it works.

We will still try and stay on course for round 5 of chemo to start on the 10th of March. That all depends on when they harvest his stem cells. They want him to have a couple days off in between. We are going to stick with the High Risk protocol since that seems to give Lukas the best results. That can change at anytime though, so we have to stay flexible (which has become my middle name, among others...)

Friday, March 14th (don't know what time yet) we will go to the Cooks Radiology office in Hurst for another MRI with sedation.

That is all I have scheduled on our plate for now.

Music Therepy

Getting the EKG

Yummy Cookie!

Here are the latest pictures!

The mold for Lukas' radiation!

Big brother joining in!

Newest Update 2/23/08

Ok, so this is late, but here is what has all happened since our last update.Thursday after all of our scans were done, we got admitted to the hospital. Once we were settled in our room, Lukas had to get cathederized. They had to collect 12 hours of urine to run a Creatine Clearance test on his kidneys. He also had to get an echo-cardiogram to test his heart function. The echo came back normal, but the lab couldn't get an accurate reading on the urine test so they had to do a 24 hour collection. The 24 hour collection didn't come back accurate either so the doctors decided to do a GFR test on his kidneys. We couldn't start chemo (and didn't want to either) until he had an accurate reading on his kidney function. One of the drugs (cisplatin) that he would be taking is super toxic to his heart and kidneys and if there is even the slightest problem with those two organs, giving him that chemo drug could kill him. The GFR gave us a good reading on his kidneys. They were working great.So, Lukas started 4 days of chemo (3 days of VP16 and Cisplatin and then the last day of just Cisplatin). Overall, it took about 9 hours a day to complete the first 3 days and about 7 hours the last day. The VP16 ran for an hour, followed by 15 minutes of Manitol (basically a "flush") then an hour of Cisplatin and then 6 hours of Manitol, regular fluids and "pumped up" fluids. The Cisplatin is also ototoxic (toxic to the ears and hearing) but Kurt and I decided that we would take the chance of having hearing problems rather than him loosing his eyesight. The lesser of two evils in our view. We also met with the Neurologist and the Neurosurgeosn. Surgery is NOT an option right now. It's too very, very risky. The Neurosurgeon doesn't even want to attempt surgery, one because it would take two different specialist surgeons (Neuro and Ear, Nose and Throat) to perform it. It would consist of the ENT going through his nose or opening up his mid-face if he couldn't get in the nose and then the Neuro opening up his head and going in from the top. NO WAY!!! Plus the tumor isn't pushing on one specific spot that is causing all these problems, so they can't even guarantee that if they were to go in and remove the tumor that it would fix anything. We spent 8 days in the hospital and are now home, but we had to start giving Lukas GCSF shots at home to help boost his white counts. I get the honors of poking my poor baby every day for the next 10 days. We will be working hard to get Lukas counts up and keep him healthy so the doctors can harvest his Peripheral Blood Stem Cells here in about a week. We will be doing scans on the tumor again to see how well this round of chemo worked. That will determine our next dosing of chemo. We are collecting stem cells to have on hand in case we end up following the heavier dose of chemo. His bone marrow will be totally wiped out at the end and he will need the transplant. If we don't have to go on with the heavy dose then we'll have his cells on had in case we ever do need them in the future. So that's where we are at. The unknown lies ahead and we are still working to take one day at a time and enjoy the times that Lukas is happy and smiling and comfort him when he's in pain and miserable.

Pictures to follow!!!

The latest!!

Sorry this is a little late!! Things have been crazy busy!! Things have changed a little now. They are in the hospital for the next week. They are trying to start chemo tomorrow. If all the test they have to do again come back okay then they start. They are doing a really intense round this time. Its going to be 5 days and 4-6 hours of straight drip every day. Then after this round of chemo they will do all the scans again and see if things are better. The dr's are really trying their hardest to save his eye sight. They tinkered with the idea of doing sugery on friday to try and remove some of the tumor but decided it was still too risky. The scans from the rest of his body can back good though. Things look really good there!! So keep praying and Lukas just keeps fighting!!

Ok, here is the latest. Monday we got to Cooks at 7am to register for Radiology then went up to get sedated for radiation. Lukas got his last dose of radiation at 8:05am. Once he woke up we had to be at Radiology to start the 2 hours of drinking contrast for his scans. At 11am he was back to NPO (nothing by mouth) for 2 hours. At 1pm, when Lukas was as hungry and miserable as he could possibly be we went back for more sedation and the start of the scans. After 3pm he was done and in recovery. When we were leaving we ran into Dr. Granger. She said she would reviewd the scans and call me that night. She reviewed the head CT and Bone Scan Monday night and called me. There is no change in the Bone Scan compared to the first one done in November (same week of diagnosis). Also, there doesn't appear to be any change in the head tumor. There should be some change but radiation continues to work for around 3 weeks after it's finished so HOPEFULLY there will be some change soon. Dr. Granger said that she wants to see what Dr. Hunt (opthamologist) and Dr. Hogan (Neuro-Opthamologist) have to say about the nerve damage and what Thursday's scans show. If there isn't any change or things have gotten worse, we are going to get more aggressive with chemo. She also mentioned possible stem-cell transplant and more radiation down the road. She said that the cancer is being a "difficult intermediate" and the treatments we've been doing might not be strong enough. Tuesday we went in for clinic. Dr. Howrey said that we are going to collect stem cells about a week or week and a half after this 4th round of chemo. We'll plan on doing this round according to the protocol Lukas is on now unless all the docs (oncologists and opthamologists) decide to get more aggressive right away-which I'm hoping they do. The CT's also showed that Lukas is really constipated, his colon is really full, so we have to start on laxatives. Thank you codine. Dr. Hunt was at his Harris office so he squeezed us in while we were in the area. The optic nerves aren't getting better, if anything they are getting worse so he will be calling the oncologists and working with them for our next steps.Today (Wed) we went in to get the radioactive MIBG injection for tomorrows scans. Thursday we go in for the MRI and then the MIBG scans (all under sedation). He can't eat after 6:30am and then clear liquids until 10am. We have to be back at registration at 11:30 am. Our scans start at 1:30 and will probably take a couple of hours. When those are done we go up to clinic to review them and decide what our next step is. We will be admitted for 3 days for our next round of chemo-whatever dose it might be. That's it so far-a lot of stuff happining already and it's only Wednesday!!! Sheesh, I'm ready for this to be over.

Last day of Radiation!

This has been a LONG and horribly crappy week for Lukas and the rest of us. The steroids have really messed him up this last week and made him irritable, miserable, restless and have made his poor little tummy really upset and gassy. He sleeps for a few hours after radiation everyday and then doesn't sleep very well at night. But the good news (I guess you can call it that) is that Today is our last day of radiation. Here is our schedule for the week. Monday-register to Radiology at 7am; go up and get sedated and start radiation; wake up and get back down to Radiology by 9am to start the 2 hours of drinking the contrast fluid; 11am start NPO (nothing to eat or drink) for 2 hours before more sedation; 1pm get sedated and start CT scans and Bone Scans; go to recovery to wake up; wait for doctor to get results and then go over results....LONG DAY #1!!Tuesday- 8:30am Clinic (long day in itself!)Wednesday-12:30pm be at Radiology to get injected with radioactive contrastThursday-not sure what time yet, but get registered at Radiology; get sedated; start MRI and MIBG scans; go to recovery; wait for doctor to get results and then go over results.Somewhere in between we are supposed to be meeting with Dr. Hogan, the Neuro-Opthamologist and Dr. Malik, the Neurologist. Haven't been able to get the appoitments set up yet... That's a long and frustrating story for another time...That's the scoop so far. When we know about the scan results and when we FINALLY get appointments with those two specialists, we'll let you know more.

A Visit

Heather and the Boys were over one day after radiation, and they were having so much fun with the trains. I think Heather was having more fun than the boys were. Ha ha!!! Anyway, they had a good time playing.