Hello 2016, may you be HEALTHY!

I’m way over due for an update, but it’s crazy how busy life gets when it’s back to somewhat normal routine. Before I would be almost annoyed when people say “I don’t know how you do all this”, because for me it was normal and now every time Facebook reminds me what happened on today’s date last year, I look at pictures almost in disbelieve that we made it thru..

Most importantly Nela is doing really good. At times I feel like I don’t want to say it too many times to jinx it. Of course there are still times when I hold my breath in while I try to convince my brain that she is sleeping longer simply because she is tired and it’s not a sign of a relapse, that her runny nose is a cold she picked up in school and cough is because of the this and not cancer taking over her lungs..
There are times when I can look at Dario and know exactly what he is thinking as Nela says her head hurts, but both of us are almost afraid to say it because then somehow it seems more real…
The further we move away from treatment it gets scarier in a way. It could be because you do get more use to this new normal and just a thought of having to relive any of the treatment seems unbearable. And for me it’s always the reality of how difficult it may be to even try and find another way to fight the disease since childhood cancer is so underfunded and under researched it’s not like we have 10s of options for relapses and progressions…
We are still very involved with many after treatment follow ups. Nela has had pretty harsh treatment which left a mark on her body that with time we are trying to adjust. She has developed cataract so we are in process of scheduling a surgery to correct this. Also last scans showed a potential of blood cloths so we are doing a careful follow up on this as well.
And then scans, time has come again for scans. We are planning to do them towards the end of the month, and as always anxiety over this is just pure torture.

This time last year we were finishing last cycle of chemo and I still can’t grasp that year has passed. A year ago we were stuck in hospital with such a thirst for treatment to be over, but also fear of leaving behind a safe place…

Today I’m so thankful we get to go back and visit what we called home for weeks, and months. I was nervous about how would Nela would react walking back onto the oncology floor but she was very excited to run around, give hugs to her favorite nurses, visit the playroom and help serve dinner we brought in for the entire oncology floor. Her amazing spirit was contagious during our visit and gave hope to many of the families. We met hand full of families who are just starting this journey and are in stage of not even grasping on what all this means.. It’s heartbreaking to know someone else is about to walk the scary unknown path you hate soo much and there is not much you can do to change it… I just wanted to hug them and not let go.
Also the nurses of the oncology floor are pure gold and have been amazing to our family, and seeing their excitement about Nela is priceless.
My hope for this year is to continue this kind of visitations to hospital, I beg for this year to be treatment free since last 3 years were consumed by it. Health is truly the biggest fortune we have and I cherish this more than anything.

Be useful, be kind

Love, J.

Oh, I’m still here… It’s September, summer is almost over, and yes cancer is still huge part of us

Life has been normal, our normal but good normal. We truly had an amazing summer. Nela is growing, learning, just being a kid which is HUGE. She sings around the house all day long, she loves to do her hair (her favorite new adventure!), she learned how to ride a bike with no help wheels, she plays tennis and even throws the racquet when she loses (dario’s genes for sure 😉 Last week she started kindergarten, I mean the real kindergarten! I still can not get over this, in a good way of course. It’s such an amazing milestone. She is truly a remarkable kiddo!

I say that cancer is still a huge part of our life because it crosses my mind daily, maybe not hourly any more but I think of it, I’m reminded of it at least few times a day. Every day I say my thanks that treatment is over, daily I inspect Nela for any bumps, bruises I make her stare at me so I can check her eyes, I come across devastating stories of relapses, new diagnoses and treatments not working…. yeah cancer will do that to you.

And it’s time for scans again. Actually we were supposed to do scans at the mid  August but because we took a family vacation, our doctor was ok with moving them to after we get back. Now since we have new insurance, we are working on scheduling those asap. I feel like I could talk about scans until I’m blue in my face and still not paint a picture of how they make me feel.  And every set of scans seems like the most important one and my anxiety level goes up.

Lastly, it’s September, Childhood cancer awareness month…  I hope more is done so less families have to go thru this nightmare. Awareness is such a huge part of making the change! The path of childhood cancer is devastating, sad, ugly, heartbreaking… but what if it did happen to you? or someone you know? would you still sit back and do nothing? I hope not!

Once again here are some horrific stats about childhood cancer

• Every school day 46 children are diagnosed, with cancer and every day 7 children die because of it.
• The National Cancer Institute’s (NCI) federal budget was $4.6 billion and  12 major groups of pediatric cancers combined received less than 4%.
• The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer.
• Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
• 1 in 330 children will have the disease by age 20.
• Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
• 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
• Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.

Please visit the Ronan Thompson Foundation education yourself, share and donate.

love,

J.

It’s been awhile

I’m officially the worst blogger ever!! I guess that’s what happens when life hits you…

Life has been good, very good! The best actually, because we get to go to the hospital/clinic once a month for checkups. We just went this week, and hospital seem sooo far away (it’s about 35 miles one way), that it truly made me question, how did we come here at least twice a week?!? People would always say to me, I don’t know how you do it, and there I was asking the same…

It’s very nice to visit our dr once a month, she truly loves Nela as do so many others at the clinic so our visit turns into a super fun adventure. This visit was very basic, Nela is growing, gaining weight just doing really good which makes us all very happy. Next month we’ll do blood work, and then it’s time for scans again. I don’t even have right words for scanxiety anymore. Nothing seems appropriate enough.

But for now, I really try very very hard to enjoy the moments of happiness. My whole happiness revolves around health of my kids and as long as I have that, everything falls in place. I still have moments where I’m scared beyond comprehension about everything.. Nela had another sinus infection few weeks back, and her words “I have headache” take few years of my life! It’s such a battle of feelings and emotions to handle, this happiness and gratitude a person can have for successful outcome of cancer battle, but also such a fear, disappointment and anger that comes along. I hope it gets better with time…

Last week, Facebook reminder came on regarding our arrival to New York… I looked thru pictures, read my posts, it was such a bittersweet moment. We are still in touch with Dr. Wexler (oncologist from NYC) so I sent him an email as well as an email to the three surgeons that last year on today’s date, preformed a major surgery on Nela. Within minutes, all three of them responded with such a joy and excitement to hear from me. I shared Nela’s picture told them how she is thriving and how thankful we are for what they did. I can still say, going to NY was the best decision for us!! That city and people we met along the way will have such a special place in my heart forever, can’t wait to visit again.

We are so excited about the summer, about endless beach days, upcoming family vacation, simplicity of life because that’s truly what it is even on top of school, work, activates, responsibility’s… I wish it stays like this forever!!

J.

Scans again..

How is it possible that we are doing scans again?! ahhh I said it many times that I truly have this strong love/hate relationship with scans, but it’s becoming more and more of a hate.. I almost don’t even want to do them.

I look at Nela and she is doing soo amazingly, she is happier then ever, looks better then ever, she is soo full of love and life that it almost makes me question if she can truly be real. I have never met a person, let alone a 4 year old, so passionate about life, so excited about the smallest things, so thankful and loving…  On Friday, Lana had soccer practice and we asked her coach to have Nela play for a bit. The excitement and happiness on her face was priceless. Every water break she ran out to us to tell us how much she loves us and how happy she is. For weeks, she would get dressed (in Lana’s last years uniform) go to the park and practice on the side lines, but she never complains that she is not on the field, that she is not playing with the team.. She is just so excited to be there and about soccer on Saturdays. I just can’t wait to sign her up and have her be part of the team next season.

I feel like for the last few weeks we have been so happy, that something bad may happen. But this happiness comes for being home with no hospital stays, being together everyday, very simple stuff. And then tomorrow we have scans again, where all this can be crushed in a split of a second.

To say that I’m terrified of tomorrows scans would be an understatement the constant chills down my spine and shortness of breath in the last few days is just insane. This taste of freedom and appreciation for life that we have is huge, bigger then it ever was and it feels like there is so much at stake.  I’m thankful for some sweet souls who help with the distractions, thankful for amazing family who is always standing by us.

As I sit her and listen to an old message from my dad asking me to call once the scans are done and very calmly and reassuringly telling me everything will be ok, I truly hope it will be.I know I don’t have to ask, but please send some positive thoughts and prayers that scans continue to be clear.

Thank you,

J.

 

Life and Death

Life truly is a roller coaster but as long as you have life, you have everything regardless how many times you get span around, twisted or thrown in for a loop!

And then there is death, which become a cruel reality to my family last week. It’s still very surreal to think that I can’t just call my dad and talk to him, that my kids can’t play with their grandpa, that my mom has to learn how to live without her partner of 35 years.. It’s just crazy, hurtful, sad… but also very comforting. Not in a sense that he is in the better place, since I know how much he loved life and everything involved in his life, but in a sense that he got to see his daughters grow up, graduate from schools, get married even have children. He truly had an amazing life and as much as we were not ready to let him go, or move on without him, one thing he would always tell us is that we all need to go in the order we got here and I know he would give his life in a second for my sister or myself or our kids so I know he will watch over us, and we will make sure we keep going, keep honoring him, keep reaching and keep making him proud.

My whole family is sooo thankful for all of you who came to honor and remember our dad. To all my dear friends who keep pulling me up, I love you so much!

As we just got back home, we were back to hospital to have Nela’s port removed. With everything that happen in the last few weeks, I didn’t even think too much of this, what it represents, or what it means. It truly is a huge milestone! I was talking to Nela’s favorite NP today and she said “now you have to find a pediatrician for Nela!” and I totally broke down.. It’s crazy, but to think that she can just go to a normal doctor, and we don’t have to rush to ER if she gets a fever is just overwhelming… I hope and beg with all my heart and soul it stays this way forever!!

Nela the rockstar she is, did great during the surgery, was sooo excited to get the port out and is now resting at home.

This thing called life

First of all, we finally did the whole body PET scan and it came back negative, meaning nothing is lighting up as cancer. This is a huge relief! Yesterday, Nela and I went to the hospital to get the scan done and we already talked to her about doing this without anesthesia, but I was extremely nervous how will she react once she is strapped down, pulled into a huge machine, but she is such a super hero! She told us she is ready, once she got buckled she closed her eyes and told me to sing to her while I was in the room. The tech was soo impressed and said the she hasn’t seen too many 4 year olds doing so good. Once we were done, she got up told everyone thank you and asked for some food. My heart was full of pride for this brave girl, but also so shattered that she has to go thru this. Our onc dr was out of office, but in-between her flights called me to give me the good news. I gained such a huge respect for this lady thru last few months! We started off on a rough patch since I was so mad, sad, disappointed that Nela had to go thru treatment again, but I’m so thankful she never gave up on me, she is sooo supportive and does what ever she can to reduce my stress, anxiety and I’m overly grateful for that.

Now we do MRI again, in about a month. Our dr wanted to do a close follow up and then hopefully schedule them every 3 months. We had a consultation to get Nela’s port out and this should be scheduled soon. Also we need to focus on the long term side effects of cancer treatment…  we will be making visits to ENT, eye doctor and few other to try and minimize any late effects chemo and radiation can bring.

So as we try to somewhat normalize our life, al least out of the hospital, things just don’t always work out that way. Two weeks ago, my dad had congested heart failure, ended up in ICU and is still there. His organs started to shut down, he is fighting an infection, and has been on life support but he is such fighter!! Now we play catch 22 of trying to find the best combination of everything to get him to stabilize so he can have a surgery to add a LVAD heart pump and work toward adding him to the transplant list.

But if you ask him while he is awake how is he doing, he says great, wants to go home and manages to mumble out “thank you” to everyone who walked in and out if the room. I never met a man with a bigger heart!

So I guess it’s just this thing called life.. For me I truly hope it calms down, in a good way! Running around, and now even between CA and AZ is starting to take a toll on me, but once again we still have LIFE and I see no other options then to be there and do everything in my power so we get thru this.

As always thanks for your amazing support!

J.

Paper Clouds Apparel

Life seems to be soo much more hectic now that we don’t have chemo, which is amazing! It’s making me realize how much we truly lived in a bubble where everything was revolving around clinic visits, blood draws, hospital stays, chemo… Now we have a lot of the normal life stuff which was falling behind and I feel like I’m playing catch on life.

Most importantly Nela is thriving and this is the best thing ever! We did an MRI last week and it looked great and clear which is what we dream about. Nela was also suppose to have PET and CT scan last week but she had a fever for a day which lucky turned out to be nothing, but we had to cancel the scans, go to hospital for blood cultures so now we still need to do those two scans just to make sure she is fully clear and then we will work on scheduling the surgery to get her port out.

We will also repeat the MRI in 6-8 weeks just to make sure everything is looking good. And those scans will be I think the most nerve-wracking for me! It feels like my scanxity is already bubbling up! It will be about 2 months that Nela has not had any treatment at that point and it’s just a terrifying thing! As I look at her and see the little hairs coming out, it shakes my core to even think that cancer cells could be growing as well. Ahhhh how I wish that finishing cancer treatment and protocol would mean you are truly done, but realty of all this much much more vague. BUT I honestly do know how lucky we are to have her to hold her…

Lastly, I wanted to share something that makes me very proud. Nela designed a shirt for Paper Clouds Apparel to support The Ronan Thompson Foundation. I mentioned few times before my love for the RTF and as much as I wish there was no need for any of this, it’s an honor to have Nela be part of this collaboration.  Thompson family is sooo dear to my heart and soul, and I know Maya has a very special kind of love for Nela so this was just very fitting.

Nela was super excited and took the assignment of drawing something that will be on a shirt very seriously. She drew a world with hearts, butterfly’s and stars which turned out great! Please visit Paper Clouds Apparel web site and get a shirt!! 50% of all sales will go directly to The Ronan Thompson Foundation and their mission to help end childhood cancer. Helping others truly never looked so good!

Thank you so much for your support!

Scanxity , PTSD??

I have been starting this post for hours now, and just can seem to figure out where to start…  Nothing crazy, major has happened or it could be everything. We scheduled Nela’s scan’s for next week starting with MRI and CT on Tuesday and then full body PET on Thursday. I tried to describe this scanxity before and I still keep trying… Feelings I go thru during this time are excruciating. The mind fight that I experience is very brutal.

Our life started to feel some what normal.  We had some very happy moments in our life starting with exciting news of Dario’s new job, I’m so proud and happy for him!! Four of us spent few days together, just us, enjoying walks, scooter and bike rides, hiking, dolphin chasing, just being silly, letting kids stay up extra late, even ditching school and work just so we can cuddle.. We also spent a weekend with some amazing friends who absolutely lifted our spirits… Kids spent 2 days being showered by love from grandparents and my sister..  Those things are normal and simple, but for me are the best times, extra special, they make me feel so lucky…  But also scared… it’s one of those things where you feel too many good things are happening, something bad has to happen right?

Last night I tossed and turned all night long after I read a post from one of the families we met while in NY…  Kylie is such a sweetheart who has spent a whole year in NY, away from here home, her bed, and most (almost all) time in hospital fighting against unbelievable odds. I just don’t get it.. I don’t understand any of this stuff! it’s just crazy unfair!

Here is post from Bree, Kylie’s mom..

I am not sure I will have the right words at this moment. My mind is in a fog, my stomach in knots, and my heart is broken. This week marks one year since Kylie and I got to sleep in our own beds in our own home. And in this year, we have spent every second of every minute together, ferociously fighting an incurable disease that will soon take her life. Kylie’s CT scan showed that her liver is extremely large and full of disease. The cancer is starting to take over. At this …point there is not much more we can do. She is in an excruciating amount of pain, it’s hard for her to breath and there is no way to stop the liver from getting any bigger. We are still continuing the BRAF drug, but it’s only going to buy us time. Neuroblastoma is the most aggressive of the pediatric cancers and once it’s starts to take over there is no stopping it. Doctors are giving her a couple weeks if that. We are going to keep Kylie here in the hospital where we feel would be most comfortable for her and will give Luke and I the most time possible we can with her.

Please send your prayers, positive thoughts, comfort to this family.

Return to clinic in 1 month..

That’s what our slip from Doctors appointment said yesterday… So after visiting clinic twice a week for such a long time, we don’t have to go back till the end of February. No pokes for a month, no fears over blood counts.. it’s absolutely amazing. All of course in hopes that Nela doesn’t get sick. Her immune system is nowhere where it needs to be so a fever will still send us to the hospital. And with so many things going around, even though we ‘almost’ have her in a bubble this is still scary.

Yesterday our Doctor also talked to us about measles outbreak. Last week someone with measles came into the ER of our hospital and a lot of people were exposed to it, including 10 oncology kids. I am a firm believer that parents should have a choice in health care of their child including vaccinating or not vaccinating their kids, but when choices of not vaccinating creates a serious threat to kids like my Nela I truly hope the decision was well thought out. Nela can’t get vaccinated for measles until she is at least 3 months out from her last chemo which puts her into a high risk category. In case she is exposed to it, we will be stuck in hospital for at least 20 days in isolation, where she will be pumped up with antibiotics and immunity busters in hopes that she doesn’t get it. That’s what those 10 oncology kids are dealing with right now in between all the chemo/radiation treatments they are already dealing with.  And if any of those kids with no immune system get it it’s extremely dangerous and deadly. So again, if your choice is not to vaccinate, I hope you take all the facts and surroundings in consideration.

Now that I got that off my chest 😉 bit more about Nela. She is doing amazing! if it wasn’t for the sweet bold head one could never tell she ever had to go thru anything especial cancer treatment. She is full of excitement that she had her last chemo. Our nurses and doctors at Choc were amazing during the last cycle, they made it very special for Nela. Last day we had a celebration and Nela had a smile from ear to ear the whole day. She kept telling everyone in the hallways that it was her last chemo…

We are still trying to schedule her scans. They will be something in February. We will be doing all of them including PET, CT, MRI and of course insurance has an issue with this, they keep denying it because of the cost. I am thankful that our doctor is pushing for it, and now we have to have director of the program (likely for us it’s our doctor) write an appeal and get it approved. We had to do this every time we did all the scans, so hopefully it will work again and I told them it has to happen in February. I’m not doing March scans. March scans for last 2 years were devastating so we need to do them in February and have a great results.

All this ‘freedom’ is very nerve-wracking but we are truly trying to enjoy it to the maximum. My huge hope is that one day both mine and Dario’s anxiety will ease off, for now we are still dealing it with it on daily and hourly bases.

Our favorites!!! I will forever be thankful for such a loving heart of our Dr. Torno!! And Nela’s absolutely favorite and best friend, NP Liz..

Game of numbers

Last night in hospital…
Could this truly be the last time we spend a night in the hospital?!? Ever and Forever!?!  That’s the plan! My emotions are running extremely high, one second I want to scream and cry from happiness and then another from fear.
As I sit next to Nela and looking at her as she is peacefully sleeping, I go down the memory line of all the hospital nights and days she has had in the last 10 months
Here is a little game of numbers

11 chemo cycles
50 nights in hospital
9 times she was put under anesthesia for scans (including MRI, PET, CT, Bone scan)
2 bone marrow aspiration procedures
2 spinal tap biopsy
2 major surgeries across the country
1 port in surgery and hopefully second soon to take it out
12 blood transfusions
6 platelets transfusions
30 shots to bust her white blood cells
5 echos
5 chest x-rays
2 times a week going for lab work were she gets poked to draw blood
I’m sure I’m forgetting something, but even the parts that I remember are plenty.

So what now? I would think that if you made it thru something like this list you would have a long life full off happiness, health and never ever have to worry about a thing!! Well, in this sick cancer world it doesn’t always end up that way. That’s why new promising less harsh treatments are so needed for kiddos like Nela.

But for us for now, we will do the scans towards the end of the month, or as soon as we work it out with the insurance. Scanxaty will be as high as it always is, or it seems like it goes up a notch every time. And hopefully with clean scans we can schedule a surgery to get the port out…

And then plan is to do scans every 2 months for the first few scans, and then hopefully spread them out to every 3, 6, a year..

There is currently no trials that Nela would qualify for when it comes to maintenance chemo. I guess this is good since those trials are for higher risk of relapse cases.  But we will continue to use some of the home remedies that seem to be beneficial, like her diet, detox, essential oils and anything and everything else that we can find that seems to be working to make sure word cancer is not something we have to deal with again.

Once again to all your sweet sweet souls, thank you for standing by us!!!

Hoping, begging, praying this is truly the last time she has to sleep in a hospital bed