The Strickland Family Blog

Hello everyone,

Thanks for being patient with me since its been a while that I sent an update.  Ralph and Paris just got home October 8 from New York after being gone for 1 month and a half.  I really missed them since it was literally the first time that I was away from Paris.  So needless to say Ive been spending most of my time with them.

I must say that Ralph did a wonderful job with Paris in New York.  Im glad that he was able to get to experience that time with her and deal with the crazy life of “non-stop”.  The plan for Paris is that we are off for 3 weeks so that she can recover from irenotecan and then on October 26 begin cycle 3 of temodar (oral chemo).  Assuming I can keep her out of the hospital and “healthy” we will re-scan either end of december or early january.  (fingers crossed).  As of after surgery on September 10 she was officially declared as NED No Evidence of Disease.  I just pray that this can continue for a while if not forever.  Live one day at a time…..

I returned back to work after 2 years and honestly it was easy to get back into the swing of thigs.  Things were really in perspective-the job I love really became seconday and what didn’t get done at work stayed at work for the next day.  Im out the door at 3:30 and heading home to spend time with Paris. 

She started daycare again which she’s getting used to.  Who can blame her I basically dropped her off with a “stranger” and hoped she would do well.  She started Tuesday and it hasent been bad and she seems to enjoy it, she seems very happy and carryovers songs from that specific day.  Ms. Diane really cares for Paris so I know shes in good hands.

She’s starting Physical therapy again tomorrow.  She remembers Lisa and cant wait to see her again.  Hopefully this walking thing will come quickly.  Surgery caused us to have a little set back so we are starting from square one again.  Shes taking 13-20 steps independently so I am very happy about that.  We will continue to work on it.

When you think of Paris think of the word DIVA.  Shes definately earned that title.  Shes a bit bossy but we are calling it strong willed.  We all agree shes earned that right.

Shes talking up a storm and saying exactly whats on her mind, which is a good/bad thing.  Dont feel offended if she abruptly says she doesnt like you.  She is doing great with speech and can say 5-6 words utterances.  I think she knows too many words for her own good.  Its nice to hear her speak and hear how her little voice is changing.

I cant believe shes almost 2.  It was just yesterday when we were trying to get her to 2.  Crazy how time flies.

I just want to end by saying that we think about all of the little angels that have earned their wings.  They hold a special place in our hearts. 

Stay strong…

Lauren, Ralph and Paris

Hello everyone, I got the call today regarding Paris’ surgery/pathology results

The spot by the vena cava-benign (no cancer) which is great news.

The spot by T9 is considered GanglioNeuroblastoma-which is “treated Neuroblastoma and/or mature Neuroblastoma” meaning that the cells have responded to treatment, are present in their most mature form but still require treatment.  This is far better than receiving an active Neuroblastoma disgnosis/pathology.

So Ganglio comes in 2 forms Ganglio Neuroblastoma (mature cells that have been treated) or Ganglio Neuroma (benign Neuroblastoma-cancer free) we are right in the middle between Neuroblastoma and Ganglio Neuroma.  So 50% there to being hopefully cancer free- I’ll take it.

The team meets tomorrow to devise a treatment plan-Im thinking radiation to the spot if the area falls outside where she was last radiated and from what they are saying low dose chemo most likely irenotecan.  I asked abut high dose and they said most likely not due to the size of the tumor and shape that was removed-but the decisions will be finalized on Wednesday.

We arrived in New York without a problem and settled in seeing all of too many familiar faces. It was good to see everyone again, I just wish it wasnt at teh Ronald McDonald House or at the Hospital. Read the rest of this entry »

Hello everyone,It has been 42 days since Paris and I have been home! We have enjoyed every minute of it and have been keeping busy that I somewhat forgot that we are still dealing with Neuroblastoma. But all good things must come to an end and we are headed back to New York for scans. Fingers crossed and lots of prayers are needed for a positive outcome so that we can continue to enjoy every day without the constant medical stressors. Read the rest of this entry »

We were scheduled to start treatment on Monday for our second round of IV3F8, however we are on delay. This is what happened…

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So we had only 1 day left and her heart continues to beat irregularly. That’s a one way ticket to ICU for more tests. Stuck in New York AGAIN!!!  Last dose of IV3F8 Postponed!!!!  They decided to put Paris through surgery to pull the metaport to see if the cathader impacted the heart beats, but it didn’t and now Paris is stuck with an IV.  She’s recovering. I’m very nervous to learn the outcome of further heart testing. Please keep her in your prayers.

We returned to New York on May 3 for the IV3F8 antibody treatment.  Paris began IV3F8 to target any microscopic or remaining tumor neuroblastoma cell within the body.  This treatment is scheduled for 5 days out of the month.  The doctors want to get at least 4 rounds in, assuming she doesn’t become HAMA positive beforehand.  I had prepared myself for the worst as the stories vary amongst people who have received it. Its very difficult because as a parent youa re told that you want the child to experience pain which is an indicator that it is working.  As Im talking to the doctor I’m asking if Paris is experiencing the most pain possible and then wondering about the context regarding what I’m saying.  What parent asks if their child is having pain because they want them to?  Its a strange position to be in.  The way the process works is that the neuroblastoma is within the body and is seen as part of the body, the white blood cells do not attack it becasue they see those “bad” cells as normal.  The IV3F8 antibody is derived from mice so those antibody carry a marker to cells attach themselves onto the Neuroblastoma cells.  The white blood cells see those antibody cells as foreign and since they are attached to the Neuroblastoma cells the white blood cells attack them.  The white blood cells are stimulated by the daily shot that I give her GMCSF.

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I’m leaving New York Wednesday April 22 for 10 days!  I have to return to New York May 3-9 for her first round of  antibody IV3F8 treatment.  I heard it is quite painful and there could be a lot of unexpected complications that accompany the treatment therefore Ralph is traveling with me. I’ll keep everyone posted.

This trip has been by far the most complicated, just because I think I have changed my flight at least 100 times by now-Jet Blue is getting tired of my calls! I thought that being on the 8H9 antibody would be very easy and my stay in New York would only be 2 weeks to receive the last 2 doses of antibody treatment, however again things have changed.  When we checked her platelets they were extremely low. When we began treatment they were 200 and have dropped to 15. Platelets determine if we are continuing antibody treatment 8H9 because it is linked with radiation and since they are below 50 we can not continue.  We will save the last 2 doses for the future (hopefully we will never need them).

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