Thursday, January 29, 2009

huh? English please

Per doc....the test showed Lisa did not have a certain fungus called aspergillus. She also does not have cmv virus infection. There are no tests for other fungus, other viruses, and many bacteria that are called atypical (walking pneumonia it used to be called), so we will give her the antibiotic for walking pneumonia now. She will also probably get the anti-fungal medication during transplant in case it is one of the fungus that we can't test for...

Wow....I wonder how the docs ever learn to spell all those words. So, it turns out that Lisa doesn't have specific fungus/infections they were looking for, but probably has some type of infection, therefore she will be put on a course of antibiotics to clear whatever it was that made the spots show up on her lungs. The odd thing is, she looks and feels great, no sniffles, sore throat, fever...nothing. But, better safe than sorry. Once antibiotics are finished she will have a CT scan of lungs added to list of things to, while we are looking at inpatient treatment soon, I doubt it will be Monday.

Tuesday, January 27, 2009

Never a dull moment

Here's the test Lisa is scheduled for as we inch forward towards bone marrow transplant and vaccine trial:

Thurs, 1/29
9:00GFR kidney test
Level 3 Mott*check into Nuclear Medicine at 9:00 am for injection of dye and scan of kidneys
*two lab draws will take place at 1 hour and 3 hours after injection

1:00Echo cardiogram and EKG of heart
Level 1 Mott*check into peds cardiology clinic

Fri, 1/30
7:00lab draw, urine sample
B2 lab in cancer center

8:00 Bone marrow biopsies
Level 3 Mott pre-op

Mon, 2/2
possible BMT clinic visit
will confirm once we get more information about timing of admission for transplant.

Monday, January 26, 2009

Good Test Results!!!!!!

The results are back and they look good. Lisa has had significant improvement. There is no new sign of disease. Some areas in her right leg still show activity, but definitely less than when we started. Abdomen looks clear. There are some spots on her right lung, but they don't believe those are cancer....they think it might be some sort of infection so Lisa will be going for blood work tomorrow. If she does not have an infection, the plan is to start her on the vaccine trial on Monday. If there is an infection we will need to clear that up before treatment begins because once she receives the high dose chemo, she won't have any immunity to fight infection.

So....the news is good! I still feel like I'm holding my's been so long, I think I've forgotten how to breathe.

For those of you who want want the more technical's the written synopsis from the doctor (thank goodness she called us to explain it!)

MIBG:Significant interval improvement in MIBG avid disease. No new foci of abnormal MIBG activity. Faint residual MIBG uptake in the right proximal tibia, decreased compared to the prior study. Interval resolution of the midabdominal retroperitoneal MIBG avid neoplasm.MRI:1. No evidence of recurrent abdominal or pelvic neoplasm is identified.2. Diffuse bone marrow signal abnormality, possibly due to marrow reconversion. Superimposed upon this, there are focal areas of signal abnormality and enhancement within the bilateral proximal femurs, iliac wings and thoracolumbar vertebral bodies, as described above. Residual metastatic disease cannot be excluded. If clinically indicated, follow-up MIBG scan might be considered for further evaluation.

PET scan:1. New right posterior upper lobe lung nodule with increased FDG uptake suspicious for a metastatic focus.----However when I talked to the radiologist he said more likely infection as neuroblastoma does NOT usually go to the lung. 2. Interval resolution of intense FDG uptake in the distal femur and proximal tibia with minimal residual metabolic activity. This may be physiologic or may represent minimal residual disease

Saturday, January 24, 2009

All Lisa's test were completed yesterday. We should know early next week what results were. If she has responded to chemo treatments, she will most likely be started on the vaccine trial the first week of Feb. If the cancer has not responded well to the chemo, we will most likely be doing the MIBG Radiation, but there is a wait list for that procedure so our guess is she would do a "maintenance" chemo.

Either of the treatments will be tough on her immune and will require a bone marrow transplant with a 3-4 week stay at Motts. While we've been enjoying our time at home, mentally we've been prepping ourselves for a tough month. I can only hope that she handles the treatments well and recovers quickly. There are so many things that could go wrong, it truly will be a day by day situation.

I hope that our prayers are heard and that soon we will be through this next step. She is such an awesome kid....just like her brother and just seems so cruel to that she has to endear all of this.

Wednesday, January 21, 2009

Mike here with a quick update - Lisa is still doing very well since the last blog entry. Rainbow Connection set us all up with tickets to the Detroit Auto Show on Monday. We were able to enter an hour before it opened to the public which was nice. All the kids enjoyed it and were able to pick out their favorite rides while mom and dad grudgingly evaluated mini vans (not that we plan on buying).

This week Lisa is undergoing and MIBG scan and a PET scan. Those along with the CAT scan last Friday will give her medical team a good view of how she is doing. We anticipate being admitted early next week to begin the next phase which will be very high doses of chemotherapy that will eliminate her ability to fight off any infection. After the chemo she'll receive a bone marrow transplant - her own marrow was harvested last month. My understanding is that that will complete her 'standard' treatment for Neuroblastoma. Once all of her blood counts are back to acceptable levels we expect to enter into a trial phase. The trial we are expecting is a vaccine trial. Here's a link to a interesting article on the subject -

Friday, January 16, 2009

School is closed...are you kidding me? it's a little cold they really have to close school? Kids these myyyyyyy day....

About 15 minutes after giving Maranda a hug goodbye, yelling for Tommy and Chrissy to get up and then racing out of the house this morning with Lisa still in her pjs, I heard on the radio that 422 schools were closed today because of the cold...What?! I called home and sure enough there was cheering in the background.

You've got to be kidding....Lisa and I are off to the hospital and the rest of them are at home doing the no school dance because it's cold outside...really, where is the justice?!

Anyway....Lisa has been having a fabulous last two weeks and I've been living in "pretend" world, hence the lack of blogging going on. It's been nice to just pretend this whole situation is done and over with. The truth is it's not over, we still have a hard fight in front of us, but overall things are good. We've had 2 straight weeks together at home, we're all breathing, eating and functioning.

Today is the first day of the series of tests that will be going on for the next week to determine whether Lisa's cancer is progressing or not, whether treatments have been effective or not and what are next steps. We're pretty used to the test routine (although I still hate it when then put her under anesthesia) and anticipate everything going smoothly. It's the next step that is going to be a big hurdle. Even though we know a little better what to expect, you just don't ever REALLY know....and this next step will most likely be a pretty aggressive one that is really going to knock Lisa on her butt.

Not sure how I feel about all this...while I want to believe that Lisa will be the "one" and have a full's hard to believe that we would be so special that God would allow us to keep her when there are so many other children whose families suffer the same disease and have a dismal outcome. I'm not really sure why we should be any different. So I stuff those thoughts deep down and try to stay in the moment, because as I've said before...none of us really know "when" we are going to be called back. And with Lisa, at least we've been given a heads up and know to appreciate and love every minute we have...worrying about the future and the what-ifs really doesn't get me anything but sad.

So....I sit here and type and wait for them to page me that Lisa is in recovery and I think that life is pretty good...the sun is shining, it's very warm in the room I'm at, and I've got lots of family and friends who care about me...who could ask for more?!

Hope you all have a warm and wonderful day!!

BTW...a big hello to our banker friends at Auburn Hills Comerica....thanks for reading!

Monday, January 12, 2009

No news is GOOD news

This last week went exceedingly was like a breath of fresh air. Lisa was feeling great and went twice to preschool. Her appetite and her energy is up, up, up.

Maranda went for a follow-up with surgeons and they are pleased with how she is doing.

I had the time to pay a surprise visit to Thomas and Christina at school in an attempt to get them on was a nice switch of problems to deal with.

This week hopefully will be another easy one. Lisa isn't scheduled for testing until Friday and then next week there will be scans/tests done daily. After that we should know what protocol we are going to follow and anticipate the pace picking up and the road getting bumpy again.
Our neighbors Scott and Terri, lent us one from their pack for a couple nights. That's Bentley in the picture with Lisa who has been playing with him almost constantly. A welcome distraction to be sure.

Wednesday, January 7, 2009

Back To School (For a Day)

Mike here:
On Monday, Lisa visited her daycare for a little while and setup a time to visit again on Tuesday. I dropped her off at 10:30 and planned to let her stay for just a couple hours or up until nap time. When the time came for me to pick her up she wanted to stay and nap and then continue to play with her ol' friends. Maranda and I picked her up at 3:40 PM. She had a lot of fun, she said, and would like to go back again.

Lisa's next treatment is another CAT and PET scan scheduled for Friday, 1/16. Those images will help direct the next steps. If the cancer is 'stable' then we'll go straight into the vaccine study followed by bone marrow transplant. If the disease is progressive then she'll continue chemotherapy as she waits for an opportunity to enter into the MIBG BMT study. Let's hope for the former.

Since Lisa's apheresis on Friday, where her own marrow was collected and those tubes were removed from her leg, she has been remarkably more energetic and hungry. What a difference. It's really nice to see her like this

Saturday, January 3, 2009

Mike here: The kids had a great Saturday afternoon at the lake playing "noodle hockey" on the ice. Basically take a swimming noodle and whack at what ever you decide on as a puck.

From left to right is Chrissy, Thomas, Lisa, Maranda (lying down), and Linda. The black lab behind them is Bently, ever present at the lake. Bently will be staying with us for a week while neighbor's Scott and Terri are on vacation next week.

Shortly after this photo was taken Scott hooked up a trailer to his four-wheeler and pulled the kids and us around the lake. After dinner we plan to have a bonfire and make some Smores. Lisa 's having a great day. With the line out of her leg, and the discomfort of it, she's getting around just fine. Oh, Her eyelashes are almost all the way grown in, she has eyebrows again and a fuzzy head.

Stem Cell Collection successful

Yeah...they were able to collect the stem cells yesterday. We also had the temp line pulled out. That turned out to be a 3 hour ordeal! The doc pulled the line out with no problem. Lisa screamed, yelled and fussed with no problem. Stopping the bleeding was a problem.

Normally after 20 minutes of pressure, you bandage up the site and your on your way. The nurse applied 20 minutes of pressure and then another 20 minutes of pressure and then another 20 minutes of pressure. Another nurse took the next 20 minute turn. The child life specialist was there helping cleaning up bloody gauzes and keeping Lisa distracted with toys, movies, music, juice....anything she wanted to help keep her calm and lying still. Two of our nursing buddies came it to take a turn at applying pressure. After about an 1 1/2 hrs, the docs decided to give Lisa a plasma transfusion as we continued the pressure. That gave Lisa the push she needed. Once the plasma was finished, things slowed up and we were able to bandage her and go home.

We were warned that IF...which was a big IF, because chances were nothing would happen...but IF Lisa was to start bleeding when we got home that we were to apply pressure and call 911. Really? I thought they were kidding...but apparently the placement of the line was in a major vein and if the bleeding was to start again, we would need medical help to stop it. Wow....thank goodness she didn't start bleeding again.

Today has been awesome. Lisa has gained a lot of her pep back. She'd been a little out of it and was very tired thru the holidays (while that's normal for me, that's not normal for her!) Today she woke me up bright and early and was talking away. She's been up and about. She says her leg doesn't hurt anymore.

She was able to play on the ice with everyone here at the lake. Even after she fell hard, she was able to get up and start giggling. Man, it's so nice to see her so full of energy.

A few weeks ago, we noticed she was getting eyelashes and eyebrows back. Her eyelashes are only about half her normal length, which is still more than I have, and she's started batting them again to get her way. Today I noticed her head look a little shadowy...I do believe it's hair coming back in. Mike has been singing "Ch, Ch, Ch, Chia....Ch, Ch, Ch, Lisa). Even though she'll probably lose all of the hair again with future treatments it's still nice to see.

Next steps will be scans thru the end of January to determine just exactly what treatment will be. While we've done a lot, we are still no where near the end. So we just keep praying and hoping.

Friday, January 2, 2009

Counts are up...stem cell collection is a go

Counts are up this morning. Benadryl kicked in about 15 minutes ago. Benadryl makes Lisa grumpy...she told me to get out. So, I'm in the cafeteria blogging. I guess they are starting treatment now....anticipate being done around 12:30....still need to here from Doc if they can pull line today or if we have to come in tomorrow for that.

Thursday, January 1, 2009

Happy New Year

Welcome to 2009. A new year for many people means a new start, another chance. For me, it is often a time for reflection, resolutions, goal setting and finding ways to make my life better. As I reflect upon last year I realize that in no way could I have anticipated the challenges I would be up against in 2008, nor would I have believed I could meet these challenges, learn from them and keep going.

One of my weaknesses in life has always been not being able to go with the flow or let go of the control. I like to coordinate, arrange, plan and go, go, go. I like to have a goal, a nice list of to-do's and the ability to check things off my "list" and move on to the next thing.

Cancer has taught me that control is a luxury and not necessary nor helpful in many situations. Cancer has reminded me that life is a daily that cancer never takes a break from....and while it is important for me to keep going, it is also important for me to take breaks...ones that I don't feel guilty about. So as another year evolves, I hope I will come closer to really living my mantra of "live life fully" and that I appreciate each and every moment and recognize what a gift it is instead of just merely "getting through it". all sounds great...unfortunately, the reality is that I had to take an hour break from writing this blog for poop patrol....Lisa is eating a bit more, so that means other things are happening a bit more which means we are cleaning a lot more. Clean-up generally requires a quick bath for her(which is a bit tricky with the temporary line in her thigh that we need to keep dry), rinsing of clothes that were victimized, wiping down bathroom and floor areas with bleach, and than cleaning any areas the older kids tracked thru...ugh. So while I want to appreciate every moment, perhaps there are some that are best forgotten. Maybe I could just focus on appreciating each and every day instead!

Tomorrow it's back to the hospital to have another try at the stem cell collection. Hopefully we can have it done. The daily trips to the hospital are making this feel like another full-time job, not to mention that Lisa really wants the temporary line out because it causes her a lot of discomfort.

Wishing you all the best for the new year...think positive, live each day fully and appreciate life!