Just Breathe-Lu's Story
$33,462 of $20,000 goal
This site had been created by some of her biggest fans to convey updates on Lu's condition to those who love her, all around the world. We also want to create a space for people to express their love and support during her recovery.
Lu has touched so many lives with her wonderful spirit, and we have been so greatful to feel all those people reach out in support during this difficult time. So many people have stepped up to help us as our life plan has been totally disrupted. People have opened their homes and hearts to us and it has made all difference.
If you feel the desire to provide further support to us as we transition Lu to New York in the next month and give her continued treatment along with getting her back on her feet, this page provides a system to donate to her continued health care needs. Please do not feel any obligation to donate as we are already grateful for your love and support!
We will continue to post updates here of her progress. Thank you again for all your love, it is the best medicine we can give her.
LuLu's Fanclub xx
Can you believe that last Thursday marks one year since I was diagnosed??? We can't! What a rollercoaster of a year.
Today I had the 9 month bone marrow biopsy and check up, and thankfully it was a relatively painless one. My doctor is very happy with how I have been progressing, and says that my numbers are looking more normal with each visit. We'll have the full results of the biopsy by the end of the week.
From this point, I will be having check-ups every 6 weeks at the hospital, with no blood work in between (yay!!!). The next bone marrow biopsy will be in November (one year check up).
Overall I'm feeling so much better. Aside from being plagued by depression and fatigue, I'm really in a good place and continuing to feel stronger and more like my before-cancer self.
I'm attending weekly private counseling sessions, as well as a support group for young people who had cancer. Both are extremely useful in helping me process this past year.
I've signed up to a 'Cancer to 5km' program that provides a personal trainer and a 12 week training program to get me running again. At this stage I'm hoping to run the "Dash to the Finish Line" on Oct 31 (one year post-transplant!). If you're in NYC, come to the finish line!
As it looks like I'll be starting work again soon, we'll be closing the GoFundMe page. I will provide contact details at the end of this message.
I want to say a HUGE thank you to each and every one of you who has supported us over the past year. We truly could not have gotten through this without you.
The financial support you provided meant that I have been able to recover without the stress of going back to work too soon. We have been able to cover bills, insurance payments, and hospital visits without worry. It was a huge load off our shoulders and we truly cannot thank you enough for this immense gift.
Your cards, messages, thoughts, meals, lifts, and love have been incredible.
From the bottom of our hearts, THANK YOU for your support and love. We feel incredibly fortunate to have such an amazing support network holding us.
If you would like to stay in touch, our details are below. I post fairly regularly about treatment/progress on my blog.
Thank you again for your support and love. We are so grateful you were with us over the past year.
Lu and Aaron
Just wanted to share a completely non-medically related all happy post for those of you not on facebook! We saw "Ever After The Musical" at the Paper Mill Playhouse this afternoon, and it was truly wonderful.
It was delightful to be able to go to the theatre together, and the show was just great - even Aaron genuinely enjoyed it!
Thank you for your well wishes over the past week and your continued love and support.
Lu and Aaron xx
This week's check-up was the best in a long while! Counts are looking good overall, and I was given permission to go to the theatre again!!! HURRAH!!!
I still need to be cautious about crowds and avoiding sick people, but now that flu season is over, my doctor feels it is ok for me to venture out a little more. Look out NYC theatre scene... Lu is coming at you (bit by bit and with great caution)!
Aaron and I are heading to the Paper Mill Playhouse next week to see "Ever After: The Musical," which is based on my favorite 90s film of the same name. It's where the quote "breathe, just breathe" hails from. Rather apt I think!
My head is now covered in a unruly mop of curls. Not sure if I like it... I'm letting it grow to see what happens. The hand-foot syndrome is completely gone, and I'm generally feeling much better.
I'm done with all the strong drugs, and now I'm only taking acyclovir (an antiviral), thyroid medication (thyroid function is still a bit weird), various vitamins, and wearing an estrogen hormone patch (early menopause = fun, said no one ever).
I now only need to go to the hospital once a month for check-ups and blood work, and every two weeks I'll have blood work done at the Brooklyn Infusion Center (just to make sure nothing pops up unexpectedly).
It is WONDERFUL to be out and about a little more. My energy still isn't quite back to normal, but I'm getting there. For those of you not on facebook, I've attached a picture of Aaron and I on our first date since I was diagnosed. We ate at Purple Yam, an amazing Filipino restaurant just down the road from us in Brooklyn.
Thank you for your continued support, messages, and love. You are truly an amazing group of humans.
The bone marrow biopsy happened on the 7th May. It was quite a painful one! Aaron was absolutely amazing holding my hand and letting me yell in his face.
The main thing is that the results look good. No trace of leukemia/blast cells, and blood counts are all just about at normal.
Unfortunately my immune system is yet to recover, so I still can't go to the theatre, be in crowded places, or be around any one who is sick. There isn't much I can do to help the immune system come back. Taking supplements risks boosting different parts of the immune system, which can actually cause me more harm. It's just a matter of time, and avoiding getting sick! Continuing to eat well and exercising will help, but time is the main factor here.
I do have enough immunity that my doctor has lifted some restrictions. I can now ride the subway (as long as it's not crowded), and eat in a restaurant (as long as the food is freshly prepared, nothing raw, and it's not crowded). Such luxuries! Aaron and I celebrated with a date day where we headed to Prospect Park on the subway, walked around, and ate dinner in a restaurant. I ate long awaited dumplings and it was just glorious!
My other symptoms have continued to improve. I'm on a thyroid hormone replacement which has (mostly) balanced out my mood and energy levels, and, after a long battle with the insurance company, I've finally started seeing a lovely psychologist who specializes in treating people who have had cancer.
Shortly after the last post I developed hand-foot syndrome. It's a side effect of a chemo drug, sorafenib, that I have been taking on and off since January. Sorafenib is thought to target the flit 3 mutation which can be an indicator of a higher chance of relapse. Unfortunately the sorafenib has lots of potential side effects such as nausea, fatigue, mouth sores, and hand-foot syndrome. The latter is extremely dry skin on the hands and feet that turns into sores. I had it so badly on my feet that I could barely walk. I stopped the sorafenib, and the sores went away. I went back on the sorafenib at a lower dose, but the sores returned. I'm back off it until my next appointment in June.
For now I'm on fortnightly blood tests in Brooklyn, and monthly check-ups at the hospital. I'll have the next bone marrow biopsy in August.
It's frustrating to still remain restricted for the next three months, but I'm keeping myself busy and trying to make the most of my time.
Thank you as always for your love, messages, and support. I truly couldn't do this without you!!!
You're looking good Lulu. It is really uplifting to hear such good news. Here is hoping that you continue to improve and never have to look back again.
Counting down to NORMAL. I think we're getting near Blast Off!
Hi Lu, All great news! Always thinking of you. All up hill from here!! Love Jo and Howard xo
Today's news is absolutely wonderful! So happy for you that the transplant has worked. (Yay, for Anita's bone marrow!!!) Once your immune system is up and running again, there'll be no stopping you, Luisa! Love to you both and a special thank you to Aaron for everything he has done. From a super grateful Ma
Thankyou so much for the latest update. Best early Christmas pressie! I dont need anything else now :) love you and hope you be kind to yourself in the remainder of your recovery. Xox
YAH!!! YAH!!! YAH!!!
Luisa, this is just the very best update to wake up to this morning. I am beside myself with joy for you!!!!!! Love you so much. Many warm hugs, Ma
Ohmygoodnessohmygoodness!!!! That's so awesome and amazing and I knew you could do it! It's very hard to type this as I'm practically jumping up and down with joy. :p
That's wonderful news! Emil and I look forward to meeting you when we're in NYC the next time, and to seeing Aaron!
Hi beautiful Lu, thankyou to you and to Aaron for keeping us all updated. So thrilled to hear things are as the doctors would hope right now. We and our church are all praying for your full recovery. Love from Pete and I!
Great news!!! :) knew you could do it xox
I am so excited to hear this! I love you so much, Lu and I am thinking of you always
Congratulations!!! I'm so happy that you're getting better, Lu!!!
WOW, so so Happy to hear this news, God truly answers prayer. I hope that you and your Husband cherish your time together, you are getting another chance, how freaking wonderful is that?? xoxo hugs and prayers from Florida Mary & Julio
Hi Lu, I'm certainly aware of the good fight and the capacity to be positive and climb on top to stay there!! My thoughts are with you and you have incredible energy and drive, which has been your signature. During those times, I have had the pleasure, opportunity and experience of observing and sharing those experiences with you Anita and Mercedes. As they say in the business stay focused, do your preparation and research for the role you play and be in the moment.
We love reading Lu's up-dates. Still praying for her, and that she beats this horrible disease. Hang in there Lu. be strong, you can do this, I have not even met you and I know that you can . Be strong Girl! xxoo Hugs &prayers Mary & Julio
Lu, I am very saddened to hear this news and just wanted you to know that I'll be thinking of you and sending all the good vibes I can. You are one of the most truly gracious and wonderful people I had the pleasure of meeting at Bucks Rock and your zest for life and positivity is so contagious. Stay strong beautiful, you are awesome. Kick some cancer butt xx
"Be STILL and know that I am God". Psalm 36:10- As you find a moment and pray be still know that you will be healed...believe in your faith in God.
Thank you for the updates, Aaron. Luisa is in my thoughts often and in my prayers daily.