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.  

"Choc Nannies!!!"

So we know it has been a really long time since we have updated the blog and many of you have asked how Sinatra is doing and have some sense of how crazy things have been for us the last few weeks. Here's a little more on whats happening now and what is coming.

She had just eaten chocolate covered frozen bananas, aka "Choc nannies"!

We have completed 3 of 4 rounds of inpatient chemo, which is 4-5 days long in the hospital, for this phase of Sinatra's treatment called Interim Maintenance. This phase ends in early June. We will check back into the hospital this Wednesday, 6/4 if her labs are good at the beginning of the week and will finish the fourth round. This phase of treatment has been tough for a lot of reasons. Having to stay in the hospital every other week is chaotic for Sinatra and for us and it has been pretty disruptive to the sort of routine we have had in treatment so far. It's hard for her to be away from her sister and without either dad or mom each night, and its hard for us because we don't get to talk in person for more than a few minutes a day. We are truly trying to divide and conquer to keep things running as smoothly as we can for both of the girls.  The chemo this time has also been intense for Sinatra and we have had many sleepness nights both in the hospital and at home as she has the tendency to get sick and vomit at night. The endless medications at home and the hospital are supposed to help her and I am sure they do but there are times when its just so hard to give her one more.

She talks now, which is the cutest thing ever. She responds to questions and says "sure" instead of "yes" and when you ask her to do something she says "of course". Literally makes our hearts melt every time. She loves to sing, especially songs from the movie Frozen, and is truly just such a sweet, cuddly, soul. She still loves to drink lots of milk and eats an abnormal quantity of toast everyday, and has found a new favorite food. The chocolate covered frozen bananas from Trader Joe's are always a slam dunk no matter how bad she feels. She looks really good and healthy and if she hadn't lost so much of her hair in the front of her head you might not even guess she is treatment. She is super active around the house and we can't wait until we can take her back to the park again, or to a gym class, or other activities that the other 1-2 year old children are doing right now.

So here is a bit about what's next. I created a little treatment cheat sheet for us to share what we have ahead of us for the next part of treatment.

Round 2 of 4

Sinatra showing her displeasure with the
'CHOC Bear' waffle. It clearly doesn't fit
into the Toast or Whip Cream category.

We have now finished the second of 4 rounds for the 'Interim Maintenance' phase of Sinatra's treatment.  We were able to start this round much sooner because we didn't need to have a lumbar puncture procedure to start, this enabled us to start the required 6 hour IV hydration right away when we arrived at the hospital.  

One things that was surprising but exciting was the weight gain that Sinatra had shown.  In the previous round Sinatra was ~9.7 kg and when she weighed in this round she was up to 10.7 kg. This is great because it means that she is eating.  Even though all she wants is Whip Cream, Toast and Milk, she is eating!!!!  Now the tough part of this weight gain is we had to increase all dosages of her medication and chemo.

Sinatra showing a big 'smile'
while drawing at the CHOC playroom

As the treatment went on for the first 24 hours around dinner time each night Sinatra started sweating and vomiting.  Sinatra didn't react this way to the High Dose Methotrexate in the first round so we were surprised by this reaction.  We talked to the nurses and doctors regarding this and they say that this is expected.  They mentioned that in the 4 rounds of this treatment plan Sinatra will react worse each time of the treatment.  That is scary because now we can only imagine what round 3 and 4 will be like.

During this stay at the hospital we only saw Sinatra's Blood Sugar drop to a low level one time, which is very good news. It was again at a time when she didn't eat anything for the prior 24 hours so we still think it is during times of fasting.

We finally discharged on Sunday at 10:00 pm and it was nice to get home again.  We are scheduled to begin round 3 of this treatment plan on Wednesday 5/21/14. 

Racking up frequent stay points at the hospital!

Sinatra riding the halls with IV stand in tow.

We have started our first week of the new phase of treatment called Interim Maintenance, which will take place in the hospital.  The expectation was set that this could be anywhere from a 3 day stay to a week.  We of course never plan on a 3 day stay and always assume a full week.  

The week started on Tuesday when we arrived at the hospital around 8:00 for admissions.  Once we got up to our room we then waited until about 11:30 for our lumbar puncture procedure.  Once that was done we started the seemingly forever wait for our high dose methotrexate treatment to start.  To start the high dose methotrexate Sinatra first has to hydrate over IV for 6 hours prior and then her urine has to show certain criteria in a test before she can start.  It seemed like forever but we finally started the high dose methotrexate at 10:00pm Tuesday night.  This chemo  runs for 24 hours and this first dose went very smooth. Once the chemo has completed the nurses start giving a follow up medicine (Leucovorin) at specific intervals after the start time of the methotrexate to help the body get rid of the chemo.  We can't leave the hospital until her methotrexate level is below .01 which is on average around the 72 hour mark. We also must monitor the methotrexate level and be very mindful of when the Leucovorin is given because if the methotrexate levels don't go down in a steady pace it could cause some serious side effects.  This is the purpose of us being in the hospital the entire time.

As always things were going smooth and then we are dealt another blow.Thursday afternoon the Dr's noticed that Sinatra's labs came back with a low blood sugar.  After research they saw that her blood sugar had been low multiple times over the past few months.  This was significantly low and we were surprised that she showed no side effects (tired, confused, seizures).  Sinatra's blood was 40 and below many times and the normal level should be above 60 (however they want to see above 80).  Now we had to start testing to see if there is organ issues that are causing this low blood sugar.  It also would make for an interesting night because we now had to wake up every 4 hours to prick her finger (the same as someone with diabetes) to test her blood sugar.  As long as she stayed above 60 throughout the night we would be considered ok.  Luckily she would stay around the 90 mark which means she did great.However to be sure we are being sent home with a bold sugar test kit and a emergency glucose pen in case she goes into a seizure. 

Well Saturday morning as we were getting discharged (literally signing discharge papers) we got more roller coaster news, the Dr. said that Sinatra needed a transfusion which means we need to stay there another 4 hours minimum.  In the grand scheme it is not a long time but when you are preparing to go home and you start the process to be told you need to stay longer it is pretty deflating.

Anyway we should be back in the hospital in 10 days  or so for round number 2 out of 4.

The results are in!!!

Wow what a long weekend that was. After our procedure on Friday we just had to wait until we got word of Sinatra's MRD. It was a gut wrenching wait. While we were waiting we would start talking about scenarios and plans of how we would deal with certain results knowing that as a very high risk ALL patient, we probably wouldn't be a 0 MRD.  On Tuesday we finally got in touch with our case coordinator who had the results.  We wish we could express the overwhelming joy when she said '0'!!!!!  We couldn't believe it that Sinatra got a 0. This means that Sinatra is in remission and there are less than 1 out of 10,000 bone marrow cells that are leukemic.

This was so amazing and we decided that it was time for a night out to celebrate. We truly needed the stress reliever of a good night out with plenty of cocktails!!

Having our family meeting with Dr. Kirov,
Amanda our case coordinator and a cake
'Celebrating Sinatra's 0 MRD, Thanks CHOC'

On Thursday we had our family meeting with Dr. Kirov at the clinic to discuss the results and talk about next steps. We decided that it was time to celebrate with the Dr's and nurses that helped Sinatra hit this incredible mark so we brought in a cake to celebrate. Our meeting also helped us enjoy the rest of the day Thursday which happened to be our 4 year anniversary.

Even though this treatment and struggle is not over and we are far from being out of the woods, this was a huge milestone for all of us.

We are now on to the next phase of chemotherapy called Interim Maintenance. This phase will be 63 days and consists of a 3-5 day visit to the hospital every 14 days for chemo.  The chemo that Sinatra will be getting is call High Dose Methotrexate and takes 24 hours to infuse over IV.  There is also special protocol that needs to be followed while taking this drug due to the  toxicity of it.  Sinatra's stays could be longer or shorter and all depend on how quickly the blood tests show that the drug is out of her body.

We get started next week on Tuesday and we will keep you posted on how it goes.