My cup runneth over ...

As some of you may know, I am not a huge American Cancer Society fan/promoter. I do think that every type of cancer deserves more funding and research, but I also think that <3% of funding towards pediatric cancer is a travesty. That is a stat that has been reported on for quite some time in my peds cancer "circle". It's disappointing to say the least. Now, with that being said, participating in ACS's Relay For Life event can be extremely profound. The sense of community feels unreal and overwhelming at times. The love you feel for everyone there is exciting and heart-wrenching. The sorrow you feel for those who are angels now is sad and surreal. That is why I continue to support the event and I continue to be humbled by the support and camaraderie of our Team LOLA! They continually amaze me. Their dedication is AWESOME! Needless to say we had a wonderful weekend despite the rising temps, reaching over 100 degrees on Saturday. The Luminaria ceremony is sad and I grieve for those we have lost over the last year. But I rejoice in the cause because regardless of how much money we raise, the event to me represents a place where I don't feel so lonely in this fight. Where people adore Lauren and don't stare and whisper. Where she can be herself, sans head wear, and not feel self-conscious. Just when I think humanity has failed her, God shows me that there are still good people in the world. And for that, I am truly thankful <3

Below are two video links for Brentwood's RFL last weekend. One is Team Lola's and one is from the RFL "Living Room" where I begged Lauren to go in for an interview, but her shyness won and she didn't get over in time to make it into the video. Regardless, it shows you what kind of people we get to hang out with and they are so very cool.

I would also like to ask for prayers for two children that are near and close to our hearts. Clayton, who is battling relapsed Neuroblastoma, has been put on hospice. His disease is growing at a super rapid rate and they have run out of doable options. Please life him and his family up in your prayers tonight. Cynthia, who we have not had the pleasure of meeting personally, but have enjoyed the online friendship of her mother Nancy. Cynthia has Epithelioid Sarcoma and has already endured foot amputation and is only 11 years old. New disease was found a couple of months ago and right now, they are exploring options at St. Jude. She has had some serious swelling in both legs and have called in hospice for home care in treating the swelling and pain. Please include them in your prayers tonight as well. You would not believe how bitter this disease has made me and I hope and pray every day that new treatment options become available very soon for our children. They deserve to be living a normal life. They DON'T deserve to be sick like this, ever.

peace and love
-cherri

The FORK in the road

Hello everyone!

It seems that we are at a fork in the road concerning decisions on Lauren's next treatment plan. After discussing the preliminary scan with her Oncologist this past Tuesday, there are still some looming questions. Long story short, we do not know for sure whether the spots in her lungs (which coincidentally have NO metabolic activity) are either cancer or scar tissue. Without a biopsy, we will really never know. In addition, the primary tumor, which showed NO metabolic activity back in November, is now lighting up again. *BIG SIGH* We have not discussed additional conventional/traditional treatment protocols (assuming the Oncologists would want her to stay on the current/last protocol) but do have a couple of options we have courted from the Naturopath. I am not 100% prepared to discuss these options until late next week when I will Skype with her ND. Until then, I will let y'all sit with this latest news. Uncertainty really does suck. If we knew more information about the lung scans, then it would be a lot easier to decide whether we go left or right. But that isn't going to happen and we are going to just take a few weeks to consider all her options.

On Sunday we joined NNCCF at Wild Island Adventures in Sparks for some mini-golf and go-cart fun. It is always nice to see our fellow cancerverse families (some of whom we never get to see because treatment days are different for everyone). We met up with our favorite nurse, Courtney, whom we will not be seeing anymore in clinic as she has decided to not go back and forth from hospital to clinic and will be focusing herself full-time at the hospital from now on. I am so glad that we have developed a friendship outside of treatment because she really is a GREAT person and Lauren and I would both miss her very much if we didn't see her anymore. We had a blast playing golf and Lauren was driven around in the go-carts by her surrogate mother, Leslie, from NNCCF. My heart broke when I saw Sandra, another mom who I got to know from days at the hospital when Lauren was receiving her chemo there. Sandra lost her son Cristian recently (Lauren and Cris had the same treatment days before we moved to the new clinic). I had to go outside for a quick meltdown as it was really the first time I acknowledged his death and was just so over-whelmed with grief. I hope to stay close to Sandra in the future. She really is a GREAT person and an awesome MOM =)

That's all the time I have folks. This weekend is our annual Relay For Life event back in Cali and I have been crafting bracelets and making signs with Lauren. We walk for childhood cancer. Someday, there will be better treatment options and less long term effects and I want it to be because we made a difference. If you would like to donate to ACS and Team Lola, please click the link above =)

peace & love
-cherri

Just living in the moment ...

Lauren has been doing exceptionally well. Days (or weeks) like this make you forget she is fighting for her life. It's very deceptive at times. Even before we found out she had relapsed, things were fine. So you can only imagine how we are feeling right now with her PET CT scheduled for noon tomorrow. I hope and I believe and I do have FAITH, but that little voice in the back of my mind stays on the ready, preparing for what may come. Now is the time to send up those prayers, send some positive energy, whatever you do to help get yourself through the day ... please add Lauren to your "list".

My mother-in-law visited over the weekend from Oregon. On Sunday we drove out to Animal Ark, a local animal sanctuary that our Orthotist told us about. It was a beautiful day, perfect for our mini safari. Lauren had a fabulous time and we even let her drive the golf cart, albeit I was holding on for dear life, for a bit.

Monday I drove her down to Carson City to a horse ranch to go horseback riding. Erin, the owner, was amazing and really peaked Lauren's interest in 4H. I've been trying to get Lauren interested in some outside interests so I am excited she had such a great time =)

Physical therapy is going great and Lauren finally got her orthotics last week. With jeans over them, using her walker, it's amazing how much her gate has changed. We are changing up her schedule to now go twice a week. We've talked a lot about having patience and knowing that this isn't going to happen overnight. Unfortunately retraining her on how to walk and strengthening her muscles to do what they are supposed to do will take time. But it will be worth it as I know she will someday be able to run and play soccer again.

Well, I am off to bug Tyler about packing. He is flying out tomorrow morning to meet up with his Grandma Bev in Oregon, then driving down to Lake Shasta on Friday for a four day vacation on the houseboat. I am already setting up reminders on my cell to remind him to put on sunscreen! I may be a nag, but he will thank me when he's older =)

I will probably post a short update tomorrow evening, as I have been promised a call with preliminary results of Lauren's scan. Being in Reno delays final report because they (the oncs) like to have the image disc sent to CHO to have their Radiologist read it before communicating the final. Sigh. Regardless, we will know something by tomorrow night. Hoping for the best possible results. NO EVIDENCE OF DISEASE!

peace and <3
-cherri

Happy 15th Birthday Lauren!

Tuesday was Lauren's 15th birthday! After a week from hell, having friends up for the holiday weekend and ending it with an amazing birthday really made it all better. Her counts have recovered and she is well on her way back to normalcy (whatever that means =)). She's been asking for a keyboard for a few months now, so we got her one and she has been on it non-stop. In fact, using YouTube and her keen sense of hearing, she has learned to play a Miley Cyrus song already. Music really is the best therapy!

We picked up her AFOs yesterday and honestly, they couldn't have come sooner. Her neuropathy continues to plague her and has gotten worse over the last few weeks making it impossible to walk without assistance. Up until now, there has never been any pain, just tingling and numbness. I've prolonged the need for Neurontin only because it is a maintenance drug. She would need to take it everyday. In the last week, she has started having pain in her right big toe. I'll be adding this drug if the pain persists.

Her next PET scan is scheduled for June 7th. I am going to push for a sooner reading, but have been told that I may not be able to see a doctor to discuss until June 25, which my fellow momcologists will agree this is unacceptable. Welcome to seeing traveling oncologists and not doctors who actually live here. I am sure I can get a same day reading from the radiologist here in Reno, but the oncs like to have the imaging read by one of the radiologists at CHO and then deliver the news in person. I've fought over this numerous times and short of traveling to Oakland for imaging, this is how it goes. Even if we did travel to get the scan, it's still at a private facility as CHO does not have PET equipment.

This weekend will be more celebrating as my mother-in-law is coming in from Oregon and we have a few special things planned, including visiting a wild animal sanctuary on Sunday and horseback riding on Monday. It's supposed to be nice and warm and I cannot wait to get some much needed natural vitamin D =)

I leave you with video of us singing Happy Birthday to Lauren (and her singing to herself). Isn't her smile contagious?

peace and love
-cherri