Story continues on Facebook

We apologize for not updating the blog on a regular basis. We have started updating on Sinatra's Facebook page so please visit us there so you can stay connected Sinatra's progress.

You can find her page here:

https://www.facebook.com/Sinatra-Strong-105190819878831/

A Recurring Nightmare

50 days from the end of Sinatra's 2.5 year treatment journey. 

Sinatra in November, close to 2 years after
she was diagnosed

We were so excited and had started to plan the end of treatment party, trip to Hawaii with the family and swimming in the ocean and lake.  We have dreamed about what it will be like to not give medicine every night and wondered what it would be like to watch Sinatra's body recover. Our dreams were put on hold abruptly this week.

We are sad, angry, scared, heartbroken and devastated to update you that Sinatra has relapsed and will begin treatment for Leukemia almost immediately.

We made it almost two years in remission and we were so close to being out of treatment but the cancer is back. This is a unique case as well because it is not the same leukemia (ALL) that Sinatra had to start, it is now AML so there is a different plan to attack this.  While we are still searching for details and the best course for Sinatra, we do know that we will begin intense chemotherapy on Tuesday March 8th. In our discussions with the doctors we learned that Sinatra will spend extended periods of time at the hospital while in treatment and this begins with two 28 day phases of intense chemo to try and get the leukemia into remission.  The current plan is to get the leukemia into remission and then she will have a bone marrow transplant either after the 2nd or 3rd round of chemo. We anticipate that in early summer Sinatra will receive a bone marrow transplant.

We have two short days home right now together as a family before we check Sinatra into the hospital for 3-4 weeks.  We will keep you updated on the progress but for now it is hard to discuss these details as it is a huge impact to our family.  While we are absolutely positive that we will come out of this successful and cured. Please allow us this time to be present with her as we make this adjustment as a family. We appreciate your positive thoughts and prayers.  

What a difference 6 months makes!

Sinatra 18 months ago.
This was her first morning in the hospital

Here is Sinatra 1 year ago.

There are some days that we all wake up and things seem so normal, which scares us because we know that the roller coaster ride that we started in 2013 doesn't end.  Recently we sat and talked about what we were doing last year at this time and remembering how difficult things were for our entire family.  We have been in Maintenance for almost 6 months now which means we are about 12 months from the end of treatment and true to form this has been the phase to try to get us back to normal.  In these past 6 months we have seen many things change from our last years experience. Here are a few updates on Sinatra and her battle with Leukemia:

• Sinatra has started swim lessons again and loves them. Sinatra is limited to pools that are known clean to avoid infecting the port in her chest, therefore she cannot go into public pools, natural bodies of water, water slides/water parks. Just prior to her being diagnosed we had her in swim lessons and she absolutely hated it, now we have a hard time getting  her out of the water!
• Sinatra's hair is growing so fast and it has changed from when she was diagnosed.  When she was diagnosed she had almost white hair that was straight with a little curl in the back. Today it is more of a dirty blonde color with curls all over. We are very excited every day that she wakes up with bed head!!
• Sinatra has started pre-school. This was one of the happiest but most nerve racking decisions for us to make. Pre-schools unfortunately are filled with sick kids and the thought of Sinatra being exposed to that is so scary. Patti's preschool has been incredibly supportive and took time to sit with us and discuss how to work with Sinatra and Leukemia.
• Sinatra has been going to Disney, Restaurants, Parks, Petting Zoos, Malls, Birthday parties and indoor play facilities for kids.
• Sinatra will be going to visit family in New York in October for a family reunion and her great grandmother mimis birthday.



Sinatra in swim lessons

• Sinatra became a big sister to Soleil. Soleil was born on March 5th and Sinatra absolutely loves her.

Sinatra has also hit a very important milestone today. Today is 18 months since Sinatra was diagnosed with very high risk Leukemia (A.L.L.).  This milestone doesn't mean the end of treatment or she is cured, this milestone is simply a time period that has shown some significant correlation to an event free survival based on whether someone relapses before or after this milestone.  To explain it more clearly, some Doctors or journals will say that if you are in remission at 18 months post diagnosis without a relapse, the prognosis for an event free survival increases. Today is that day and we couldn't be happier.  

Sinatra with her baby sister Soleil

Thanks everyone for your support thoughts and prayers. It means so much to us. 

Maintenance was supposed to be easy!

Sinatra and Siena at Disneyland

We are so happy. Sinatra made it to maintenance.  This is such a huge milestone for our family but just as it was when she was diagnosed, it is hard to get used to this new normal.  We had our first chemo in December and have started the flood of daily medicines to give Sinatra.  One of the hardest parts we have found in maintenance is the steroids. Yes she is on the dreaded steroid again, albeit a 'lighter' type and dose than what she got at the beginning of treatment.  However these are in pill form and to get her to take them is literally a 5-10 minute fight two times a day. We had to put them in pudding and hold her hands to get these in her mouth.  This is not going to be a fun two years.  On a lighter note, the good news is we only have to do this five days out of each month, but it wears on you regardless.  I will say that while fighting with Sinatra and feeling horrible and realizing that she is going to equate mom and dad as the bad people giving her this horrible tasting pill, I did come to a realization (and I do say this with no judgement).  We have heard many times while getting treatment a parent or guardian saying that their child missed a home medicine because it was too hard to give them the medicine, or they didn't like it.  While giving Sinatra her prednisone (steroid), bactrim (anti-biotic), zofran (anti nausea), mercaptopurine (chemo) and methotrexate (chemo) one night I realized that yes this is horrible and makes us feel like crap, but I would rather have our daughter be mad at us and be scared every time I bring her pudding as long as that means what I did saved her life.  I will not miss a single dose of medicine for Sinatra.  We (as parents) discussed this early on that there is nothing in this world that would keep us from getting to a doctors appointment or giving medicine or getting a check up. To us every decision we make or made from December 2013 has been to save our daughters life.

Anyway here are some of the things that are making maintenance great:

Aunt Lori's Wedding

Sinatra at Sea World

• We got to take Sinatra to a restaurant for breakfast (in public)
• We skipped a night of giving Sinatra a bath (prior we did every night to keep her from germs)
• We had people over to our house for  a small get together (couldn't prior to limit sickness exposure)
• We signed Sinatra up for dance, tumble and art class (this was unheard of a year ago)
• Sinatra went in to get Siena at her preschool and loved it (sick kids, we avoided like the plague)
• We have visited Disneyland two times, Legoland and Sea World one time.
• She was able to go sit on Santa's lap at the mall (last year she was in a hospital crib behind a plastic barrier when Santa came to her room)
• Sinatra got to go on a trip to Big Bear and went tubing. 
• Sinatra was a flower girl at Aunt Lori's wedding
  
  

  

  Sinatra in gym class

I am sure there will be many more things that will make us happy and we will share them as we go!

The next 'new normal'

Wow what a few weeks it has been.  We have had some exciting times over the past few weeks, here is a list of the highlights:

Sinatras last chemo before maintenance

1. We had our final chemo before we go into maintenance
2. As a family we went to a restaurant for the first time in over a year
3. Sinatra got to go with Siena to see Santa clause

Us at a restaurant (outside and in the far corner
away from all human life, but at a restaurant)

It is almost a year since the day that Sinatra was diagnosed with Leukemia and even though the time has flown by it feels like it has been the longest year ever.  There have been so many ups and downs throughout this year that we are really looking forward to things getting back to somewhat of a normal state. As parents though we realize that our normal will never be easy again. We have two years of chemo left and many years after that of blood tests to see if the cancer has come back.  At every blood test while we wait we will not be able to think of anything else in the world besides the pending results of those tests.  For us every cough, sickness, bruise, vomit, minute of dizziness, fever or just acting weird will instantly put us on the defensive wondering of Sinatra has relapsed.  

Sinatra and Siena with Santa

To lighten this blog post up a little. Even though we will forever have the stresses listed above, this entire experience has really helped us change our perspective on things.  For example, last year Christmas was a horrible. We were in the hospital over christmas with Sinatra getting chemo. She didn't get to see Santa and Siena was surly confused because all of her friends were talking about all of the fun gifts they had gotten. We didn't celebrate Christmas until mid January. This year we realize that we need to make up for lost time and enjoy Christmas more than we have any other year. We realize that we need to make every day count. We realize that we need to be happy and thankful for 'today'.  We may get tired and grumpy sometimes but we find it much easier to get out of any funk we are in, because what is important is, making sure that every minute we are all together and healthy, needs to count!

Watching water boil!

Sinatra getting a transfusion at OPI
enjoying some Frozen

We are so excited that Sinatra made it through her Delayed Intensification phase and got some well deserved time off from the chemo.  Originally we were supposed to have about 14 days off in between phases which seemed like a perfect break and enough time for Sinatra to build her counts back. At the end of the hospital stay the other week Sinatra's ANC went up to 100 which is extremely low and risky but it was enough to get us released from the hospital.  To our surprise when we went back for labs the next week to see if we had a 750 ANC which is required to start our next round, she was still below 100 and required a transfusion. To us as parents it worries us because Sinatra was originally diagnosed when her body couldn't produce blood anymore, and now we are seeing the same trend. In fact we have come to the conclusion that for the rest of our lives every sickness, fever, bruise or lethargic moment will have us worried about a relapse.  Luckily the Doctors talked us off the ledge and made us realize that her low count was expected and the chemo worked.  It was the chemos job to get rid of the 'Blood Factory' in Sinatra's body, because that is where the Leukemia is produced as well. So after the low count Sinatra was  delayed and we would get labs again the next week. This time she was up just over a 100 and  after a few more weeks of the counts not going up we would be delayed for a full  month before her counts went up to 750.  We actually had one lab result where Sinatra had an ANC of 738.....uggghhhhhh. All that we can say is that it is nice to have a break and we know Sinatra needs it, but when you are focused on continuing treatment and getting to the 2 year promise land of maintenance, this time off is like watching paint dry.

Siena reading to Sinatra on the long
break from treatment

Sinatra has gained some weight but is still pretty inconsistent when it comes to her eating patterns. All we can tell you is that she loves mini pancakes. She will not eat anything for lunch and dinner and then when she wakes up in the morning she will down about 15 eggo mini pancakes.  Its like cookie monster but with mini pancakes.  

It is official though we are starting our interim Maintenance II next week. Then it is 56 more days until maintenance which means that we are scheduled to do enter day 1 of maintenance on Thanksgiving Day.

Sinatra and Siena getting ready for
football

Neutropenia blues!

Here is Sinatra at ER with her fever. She would get extremely
mad if we remove her hat!

It has been a while since we updated everyone, and in our case no news usually means good news. We started a new round of treatment, 'Delayed Intensification Part II' two weeks ago. It began with a week of very intense chemo, one of the "study" arms of treatment we are on, which consisted of five straight days of 6-8 hour long infusions at the Outpatient Center. She made it through the week like champ and seemed like she was feeling pretty good considering how intense the treatment was, and then 3 days later it all went down hill.

We had a rude awakening on 8/20 Wednesday night, when she started doing her whimpering cry which usually means she is about to spike a fever. This will happen when she has had chemo that will take her counts down to zero (AKA Neutropenic, is what they call it medically). She did this off an on the entire night but never actually got a fever. We were shocked, but relieved that she made it through. We had an appointment at the clinic for labs the next day in the morning at 9am and we told our nurse about what happened. The labs confirmed that Sinatra needed blood and were supposed to come back at 3pm the same day for a blood transfusion (number 10 or so since we have been in treatment).  At noon we got a call from Grandma Gloria that she was running a fever of 102 degrees and it was going up fast. After a chat with our Oncologist we were headed the the ER once again.

Here is Sinatra at the hospital.  The only thing she wants to
eat is Fruit Roll Ups. Literally 20 of them in two days!

Now here we are 4 days into being admitted in the hospital and Sinatra is still Neutropenic. The good news is the chemo clearly worked and knocked everything out, meaning her blood making factory was completely shut down. The problem now is that it's taking a while for it to start producing again. Until we start to see her counts come back up or "recover", we aren't going anywhere. So now we wait each day for labs that are taken in the early morning to tell us if we have made any progress. What's hard about this is that we have no idea when things will turn around. Could be another day, 5 more or 10 more.

The hospital stay this time has been a little trickier for us because Link started his new job at Amazon last week so things aren't quite as flexible yet since he's brand new. We also just moved into the new house just barely a week ago and things are still an absolute mess. We have decided to focus on spending time with the girls and not worry to much about all of the other chaos.

On the bright side, hopefully after this recovery, Sinatra's counts shouldn't get this low again. We are about 60 days from starting the final phase of treatment called Maintenance. We are literally counting the days, well sort of, because its certainly possible that we might encounter another delay. Thanks for taking the time to read this. We will let you all know when we come home.

Peaches and Eggs!

Sinatra is not herself, she only wants to
cuddle and lay down.

We are currently in the throws of Sinatra's Delayed Intensification round of treatment and it has not been easy. This has been one of the hardest phases so far for all of us.  Sinatra just seems like she is not herself. She doesn't have all the energy she usually does and seems to be much more 'ill'. Its also become more difficult to give her the many medicines at home she takes each day because she often says "no thank you" when you approach her to give it. It's sweet that she's polite about it and it breaks our hearts when she nearly vomits trying to get it down or cries. We have experienced much more vomiting, sleepiness, anger and weight loss in this phase. Sinatra has lost almost all of her weight again. She weighed 10.3kg recently which is less than 1kg more than when she was diagnosed in December 2013. If you recall at that point in time they were concerned with her weight being so low.  It is sad to see Sinatra this skinny, her spine sticks out very far and even the port in her chest looks like a stack of 10 quarters under her skin. 

This will satisfy Sinatra for maybe 1 day!

We have also started steroids again. Now compared to the first time she was on steroids this has been a breeze but we can see hints of Chulk coming back.  The good thing is she will be done with the steroids  on 7/22/2014.  One thing that definitely makes it easier is that she can talk now, so when that insatiable appetite starts taking control of Sinatra she can tell us what she wants.  We assumed it would be more buttered toast (similar to the thousand of slices she had during her first run on steroids), but not even close.  Chulk's new steroid food is scrambled eggs and Dole diced peaches in the plastic cup.  We literally have seen her eat 8 eggs and 8 cups of Dole peaches in one day.  She is so addicted to these right now that we can offer her ice cream, whip cream, pudding, cereal, buttered toast, money, toys, candy and cake frosting but she will always reply with 'Peaches' or 'Eggs'. There are even some nights where she demands that the peaches and/or the eggs are placed in Tupperware or on a plate or in a cup. Of course we comply with her requests to avoid the wrath.

We really hope that we get through this phase soon because the mental strain on all of us worrying about her have really weighed on us this month.  We had a night where Siena started vomiting and her response was that she was sick like Sinatra. So sad that she recognizes the hard time that Sinatra is having.  We also hear the girls say, 'When Sinatra is better maybe we can go to Legoland, or the beach, or Las Vegas (don't ask), and Disney etc.?'

Speaking of Siena. We noticed a few small bumps on her cheek when she got home from preschool one day. We started thinking about what it was and of course thought, hand foot and mouth, or chicken pox. We definitely were nervous because chicken pox are on the list for us to head to the hospital with Sinatra, even if it is only being exposed to them. We quarantined Sinatra in her room right away and made an appointment for Siena to see the doctor the next morning. Luckily it was only a minor infection and we got it under control.

This has been a tough 28 days for us and we are ready to move on and start our next phase  around Aug 4th. We will keep you posted on how Sinatra feels in the upcoming weeks.

Delayed Intensification begins!

It was very weird to go back to the OPI to begin treatment again. We were discharged from the hospital on June 16th and gave Sinatra her last Oral chemo on June 22nd. During this break Sinatra lost all of her hair and it literally started growing back within days of its disappearance.  Now she has a very soft peach fuzzy head!! It was nice to have such a long break from reality but as of July 2nd we are back in treatment full speed ahead.  We began our delayed intensification treatment on the 2nd with a lumbar puncture and two types of chemo.  The one chemo (Doxorubicin) was pink in color and weirdly enough Sinatra's urine made her diaper pink for the next day. We must warn anyone that comes near Sinatra...... she has started her steroids again. We began steroids the night of the 2nd.  Sinatra's steroid dose is almost double what it was in January but she wont be taking it for a full month.  She will essentially take it for 7 days then break for 7 days and then back on for 7 days.  So hopefully the side effects wont be as prominent this time.  We are hoping that Chulk does not enter the building again.

One amazing piece of information is that on July 4th Sinatra got to go with the family to a 4th of July party.  It was amazing to have her at a social event and we know she loved it. She was so happy walking around and saying hello to everyone.  We even brought her to see the fireworks at the beach.  We know these wont be regular occurrences but we are happy she got to enjoy this day.  We are looking forward to Sinatra entering her maintenance phase which should be around mid October. Once we get there many of these restrictions should be lifted and Sinatra can be much more social.  

In patient treatment, check!

This weekend we finished our fourth and final inpatient treatment for the 'Interim Maintenance' phase that we are in.  This is a 63 day phase that had us in the hospital every other week for about 5 days of treatment.  We can't say enough about how well Sinatra is doing on her chemo. She is so active when we are at the hospital and wants to be out in the hallways all day walking around. All the nurses and Doctors get so excited when she is out walking and she loves 'hamming' it up for them

Sinatra loves walking around the outdoor terrace at the hospital.

.  Sinatra did get sick a few times during her treatment but we continue to give her the anti nausea medicine and it helps out tremendously.  We have about two weeks left in this phase which Sinatra will get an Echo-cardiogram and also oral chemotherapy for half of this time.  We will actually have 10 full days of NOTHING!! Wow, what a crazy thought of not having anything for Sinatra to do.

After this phase we will start our 'Delayed Intensification part 1' phase which is 28 days and followed by another 28 day phase called 'Delayed Intensification part 2'.  We have had all of the chemo that will be given in these phases so are semi familiar with how Sinatra should respond.  The good news is that after these two phases there is only one more 56 day phase before we enter into our 'Maintenance' phase.  We wont get too far ahead of our selves so we will describe Maintenance in a future blog post.

During this phase Sinatra has lost essentially all of her hair. We went through a week where we would be pulling large handfuls of hair  out of her head.  She now has very little left on her head and we expect either the rest to fall out very soon or we may shave it.

Sinatra's Doctor  (Dr. Huynh) came back from maternity leave which was great. We missed Dr. Huynh and are happy to have her back.  All of the Dr's are incredible at CHOC but once you are assigned a Dr and go through some of the initial weeks/months of this treatment you build a bond that is hard to be replaced.