Scan Results

Pictured with Lisa today is one of her BFF, Shalie.

Scan results are back. The good news is there has been no progression of the disease on the scans; prayers have been heard. The bad news is....the bone marrow biopsy shows a significant growth in the neuroblastoma cells since January. 80% of Lisa's bone marrow is now full of cancer cells; guess I forgot to add good bone marrow to the prayer list.

So, what does this mean? It means that while the current chemo drugs are helping keep the cancer throughout her body in check, they are doing nothing for the cancer in her bone marrow. (yah, we know, what? how does that work? why isn't it helping the bone marrow? is there a different drug for that?...the questions are endless, the answers are none). Because the current drugs are part of a clinical study, Lisa may no longer be able to receive them because the low response of her bone marrow may make her ineligible for the study. That's unfortunate because she really has been tolerating the drugs well.. Monday we go back and talk with docs about how to proceed.

One option doctors think will be good for Lisa is MIBG therapy. At this time, the clinical studies for this are closed throughout the U.S. but we are hoping the studies will open again in April. While MIBG therapy doesn't cure neuroblastoma, it has been successful in stopping the growth and spread of the disease for a time. 

Knowing the cold hard reality that this awful NEUROBLASTOMA often is the victor in this fight, we are hoping for a miracle and counting our blessings. We are so lucky Lisa is asymptomatic, doing so well and feels so good. We pray that God continues to let her feel well and be happy and gives us the miracle of intervention and returns her to full health.
As always, please keep praying.

Scanxiety

To borrow a phrase from another parent. This week is "scanxiety" week. Lisa will be having all her scans done again to see if cancer is responding to treatment. If it is, then we'll continue with current regimen. If the cancer has progressed, it will be back to the drawing board to discuss other options.


Lisa has been doing great, so we're hopeful the drugs are working. Weirdly enough, she threw up right before she left this morning. Let's just hope it was a fluke and nothing to worry about.

Keep praying.

Snowy Ohio

I'm posting from Snowy Ohio sitting and listening to conga-like music at Castaway Bay.  Kids are on winter break so we brought them to the indoor waterpark that boasts a tropical "82 degrees inside all the time".  I'll take it.

Lisa is doing well...we got here yesterday around 3 and she swam and jumped around for two hours before asking to go back to room to get in her pajamas...as we left the water area, she assured me "I'm having a really good time, I'm just tired".  Once she was showered and in pjs she fell asleep for a 3 hour nap and popped back awake at 8:20 in time to go dancing  with Thomas and Lucy.  Dancing was followed by a Charlie Brown movie and bedtime story with Snoopy.  Hard to believe my kids barely know who Charlie Brown is...apparently we don't watch the holiday cartoons enough.  Maranda and I enjoyed the sheer simplicity of the cartoon last night.....poor Chrissy missed out on the "excitement" my travel weary girl with her sensitive system was sick.

With all the good news last week, I forgot to post a big kudos to Maranda.  Her school has a character program where teachers can nominate students that they feel demonstrate the characteristic of the month. This month's characteristic was courage.  Maranda was nominated by her principal!  This being one of the harder characteristics to judge, there were not many other recipients, only about six others were nominated by teachers.  That says a lot.  So CONGRATS to Maranda...job well done...you go girl!

Lisa also started Kids Kicking Cancer....she really enjoyed it...

I think their mantra is a good way to end this post...so...PEACE, POWER, PURPOSE!

Remarkable

Lisa continues to do remarkably well. She has had almost NO side effects from this last round of chemo. She actually seems to have a little more energy...perhaps the chemo is killing off the cancer? Docs are pleased, we are pleased. Scans will be in two more weeks and will let us know if the chemo is keeping the cancer at bay. If it is we will stay with the chemo for at least two more rounds. If it's not working, we go back to the drawing board to review possible treatments.

Good news for Maranda as well; the neurosurgeon does not see any signs of a chiari malformation any longer and her cyst is shrinking as expected. This means that she does NOT have to have the brain decompression surgery done again..YEAH!! She will need spinal fusion for sure...we just haven't determined if it will be in April or June.

So, good news, finally...yeah!!! Keep praying...we love good news and want MORE of it!

Chemo Round 2---going well

The kids had a great time at camp. Rumor has it that the only time Lisa cried was when they made her come in from the snow; she loved playing outside!

She started her second round of chemo this week. Docs are pleased with how she is handling the chemo and her side effects have been minimal compared to others. Thank goodness. The chemo is "cumulative" so as the days go by, she tends to feel worse and as the rounds of chemo add up the side effects can become more intense; hopefully she'll continue to feel good.

Docs still see fluid in her ears and past hearing tests have indicated that she has some hearing loss at high frequencies. This is common for the chemo she is getting. As a "young" child she also had trouble passing hearing tests . She had tubes put in her ears to help manage the fluids and that improved her hearing dramatically. We will be getting her hearing tested again in the next two weeks; I'm hoping the solution is as easy as tubes although there was some talk about hearing aids. Ugh. Again, hard to believe.....the kid can hear an ice cream sandwich opening a mile away, how can she have hearing problems?!

People have been asking about Maranda's condition. We see the neurosurgeon this Friday. We're hoping for good news, but it doesn't seem likely. Both Mike and I feel that her spine is visibly worse. We are already considering meeting with the orthopaedic surgeon to move her spinal fusion from June to April.

So, life goes on. We keep hoping and praying.