Live with NO regrets

I am going to start this blog post out with some statistics ...

Each weekday:

46 children in the US will be diagnosed with cancer.

Seven of those children will not survive their disease.

80% of those children will have metastatic disease.

Sarcoma:

1 out of 3 patients diagnosed with sarcoma will not survive.

Only 20% of sarcoma patients will survive a relapse. 
At the time of Lauren's diagnosis, CHO had only treated 3 pediatric cases of Lauren's type of sarcoma. Ever. 

The first sarcoma parent I met was Crystal. She also works for the oncology department at Children's and I met her in "that" capacity. She brought over all the paperwork to sign when we decided to go with a clinical trial option in December 2009. Her daughter, Ariel, is a rhabdomyosarcoma survivor and had been out of treatment for a year or so when I met Crystal. To hear that Ariel was in remission gave us so much hope, where the stats rattled off that fateful day did nothing but deter it. While it was the first day and a lot of information was spouted off to us, she was there to answer questions and was also the one who told us about St. Baldrick's (she is the co-chair for the Oakland event). She still remains the only sarcoma mom I've met face to face. I haven't spoken to her since Lauren has been out of treatment and I saw a post come up from a Facebook group I belong to asking for prayers for Ariel. I knew she had relapsed right around the same time as Lauren was finishing up her treatment at CHO but I just never reconnected with her. To make a long and very painful story short, I am asking that all of you who care so deeply for Lauren, also send prayers (or whatever you feel you can do to send good vibes to this family) up for Crystal, Ariel, Elora (Ariel's twin sister) and the rest of their family. Ariel is battling relapse number three not to mention this week their water heater caught on fire and now they have no where to live while the repairs are made. Here is a link to her CaringBridge journal if you would also like to leave words of encouragement. My heart is heavy this week and I pray that they find that miracle they have been looking for. 


Lauren had day one of her chemo cycle (gemcitabine) on Monday. Tuesday we went swimming at the gym and later that day her and Tyler went to the park for some basketball (she shoots from the wheelchair pretty well =)). On Wednesday, the effects kicked in and on top of the low grade fever, she literally felt like she had the flu (body aches, chills, etc). Luckily, like clockwork, she woke up on Thursday feeling 100% better. Aside from Lauren's last cycle, where she miraculously felt great after the combo day, I can normally predict when she is going to feel crummy. She is pretty consistent. LOL. Aside from a swollen ankle (guessing and HOPING that it is from her hitting her ankle on the metal part of the wheelchair where the wheel is and bruising the bone) that is bruised pretty bad, she is doing really well. Luckily her platelets aren't emergent low so unless it gets worse, I am not going to worry. 


This week is going to be one of those weeks for why I quit my job. On Monday, Lauren has her chemo appointment at 10am (since its both drugs (gemcitabine and taxotere) we'll most likely be at the clinic all day) and I am truly hoping that giving her benadryl BEFORE the taxotere will alleviate any allergic reaction issues. On Tuesday, we are back to Carson City to see the Physiatrist. Now that we have the x-ray done, I am hopeful that we can figure out what is going on with Lauren's hip. Since there is nothing we can do about the neuropathy right now while she is still on chemo, we'll start with the hips, which were bothering her before the neuropathy made it impossible for her to walk without assistance. Thursday we are back at the Gynecologist for an ultrasound to see what is going on with the fibrosis and to get a picture of Lauren's female organs and where they are, literally. With the surgery and radiation, "stuff" could have shifted. The primary concern is to make sure that there is no blockage where Lauren to have any kind of cycle. If the opening is closed up, then we will need to make a plan soon to fix this. There has been talk of issues with healing, considering everything down there has been radiated. Radiated tissue may not be able to heal properly. To help with this, we have also discussed the use of a hyperbaric oxygen therapy.


I have a call with her ND towards the end of April, and I am anxious to see what kind of treatment plans he is going to come up with. We had discussed some stuff before deciding to use conventional treatment with this relapse, all NON-toxic, so I am excited to get this started soon after she finishes with her current protocol. While I have written before that this cycle was Lauren's last, she has decided that she wants at least one more cycle before we re-image, so that will mean a PET CT towards the end of May. As much as I'd like to think that I am in charge, I really try to let Lauren make a lot of these decisions. She is almost 15 and out of all the things in her life that she has no more control over, I want her to feel like she has control over her treatment plans. It IS her life. 


I leave you with a picture of Lauren (and her friend Poley - the IV pole, but you have to say it like your are a New Yorker (Pauly)) that I took while she was getting her infusion on Monday. She looks like a ROCKSTAR! Who am I kidding, she IS a ROCKSTAR!

Also, I wanted to add a link to a video she and I made "A day in the life of a chemo patient". It's pretty funny and includes some of our favorite onc nurses <3


Remember y'all, hug your family and friends a little tighter tonight. Cherish every single moment. Live for today, for tomorrow may never come. None of us knows how long we have here, so make every moment count and live with NO regrets.


peace and <3
-cherri