Going Home

Our journey home

Going home was different than we thought it would be. There were moments in the last 13 days where going home didn't seem like a reality. Knowing that life would be different was easier to think about at the hospital where we had help and support. In the last 24 hours as we prepared, the reality of it happening became sort of scary to come home. Thoughts about not knowing how to take care of our daughters and how to keep them both safe started to take over.

This morning we waited for Dr Huynh to come see us and tell us everything would be okay, but it didn't quite happen that way. Dr Huynh is great because she tells us the truth, the reality, is optimistic and hopeful, but real. She told us that the genetic mismatch that they found in Sinatra, MLL, is serious and the reason this genetic mismatch puts Sinatra instantly in the very high risk category is because both the cure rate drops and the relapse rate, increases pretty significantly. She also said that the Minimum Residual Disease (MRD) test we have at the end of the 29 days of treatment will help determine how well Sinatra is going to do fighting this and what our path for treatment will continue to be. She mentioned the words bone marrow transplant for the first time as a possibility, and we began to think about how our other daughter could be impacted in all of this. Needless to say we are on pins and needles, biting our nails, crossing our fingers, throwing salt over our shoulder and anything else possible until we get the MRD after the 29th day.

The good news is Sinatra's ANC today was the best it's been since we have been diagnosed at 1392 and that means she is doing well right now and the chemo is working. She is active, eating well, and she looks great. Her cheeks are even starting to puff up a bit!

When we arrived home we came to a warm welcome, and as we spent time together as a family again everything seemed so normal and it was easy to forget that Sinatra was sick. We said to each other a few times, "its crazy to look at her and know she has cancer." As we finished dinner and got ready for bed, we almost forgot to give her her medicine. 

Adjusting to the new normal is going to be tough. But the four of us going to bed all under the same roof has never felt more precious and we didn't realize how much we take our health and blessings for granted. 

We will begin tomorrow with new perspective and appreciation.

Getting By With A Little Help...

Sinatra meet Blubear. Blubear meet Sinatra.

Today was another great day for Sinatra. Sinatra woke up cheerful and full of energy. We were very active today and able to do many of the exercises that the physical therapist wanted us to do.  Sinatra's blood counts came back good, in fact her ANC jumped from mid 600's to 1044 which is very good.  We also got a special visit from our friend Blubear, the therapy dog, while on our daily 100 laps around the 5th floor.   

Since we didn't have chemo today and things were good and uneventful it would be nice to share with everyone how much all of the support from you (our family, friends, coworkers, nurses, doctors and complete strangers) has been.  It is almost impossible to describe in words how much of a positive effect your support has had on us.  We are overwhelmed (in a good way) by all of the offers for help, words of encouragement, stories of similar experiences and helping hands of the people close to home.  We have never imagined that there would be an outpouring of support like this.  Please understand that you have touched our family and we appreciate it immensely and will be forever grateful!

One Step Forward, Two Steps Back



Sinatra in the pre-op room after receiving her 'happy medicine'.



Just when things seem to be looking very positive we get more information that knocks us backwards. Today we confirmed that Sinatra has a genetic mismatch in her Leukemia called MLL. This genetic mismatch means that regardless of how Sinatra reacts to the chemo therapy, she is considered a ‘very high risk’ case. This means that she is more likely to relapse and the chemo therapy is a more intense regiment for the first year. This first year of chemo is going to be extremely hard for everyone, especially Sinatra. Sometimes you don’t feel prepared to deal with this because you can already see how hard it will actually be, but we are committed to staying positive and doing whatever it takes no matter how difficult.

Earlier in the day Sinatra had another spinal tap that took another sample of spinal fluid and put chemo therapy into her spinal column. It kills us to watch our baby be taken away to an operating room crying, but this is the 3rd time in a week so in a weird way we are used to this feeling.

Treatment Day 5 (Christmas Day)

Waking up Christmas morning was a strange this year. Sinatra and Jenn were at the hospital and Siena and Link were at home. And that night, we swapped as we have each day since this journey began. 

It was a slow treatment day for Sinatra and pretty quiet around the hospital today. Sinatra was feeling good today and and is taking full advantage of all of the toys that CHOC has to offer. 

This week has been hard fro Siena too. She has shared with us how much she misses her sister and also her daddy and mommy when they aren't present. She hasn't been able to come to visit in the hospital because she has had a cold so she is really confused about what is happening. 

Tonight Siena and Jenn went up to Grandmas Beaver's house to check out the famous "Thoroughbred Christmas Lights" and have a sleepover. 

This will be a Christmas Day we will never forget.

Treatment Day 4 (Stress!)

Today is day 4 of Sinatra’s Induction treatment plan and she will be receiving chemo. The chemo drug that Sinatra will receive today is called Pegasparagase. The nurses and Dr’s took some time last night and today to discuss this drug with us because it is a very intense chemo therapy drug.  We learned that this drug can have some extreme allergic reactions in some patients ranging from hives or itchiness to anaphylactic shock.  The nurse even mentioned that she has seen many different forms of allergic reaction including the anaphylactic shock which is very scary.  They informed us that during this chemo session our nurse will stay in the room for the entire 1-1.5 hours of the treatment and check Sinatra’s vitals every 15 minutes. Sinatra will also be hooked up to a monitor that will watch her blood pressure, oxygen levels, pulse and breathing rate.

Treatment started at 12:30 pm and Sinatra was very tired since this is her normal nap time. She had already fallen asleep in Jenn’s arms while we were hooking her up to the monitors. As the treatment started we all watched her very closely for any slight change in appearance or attitude. We were surprised that the only change in attitude was Sinatra laughing and playing around during the entire treatment. It was almost like she was having fun watching all of us sweat.

After the treatment Sinatra got to take a long nap followed by a trip to the play room. 

Earlier in the day Sinatra got a visit from the physical therapist to make sure that she wasn’t falling behind in her development because of the pain caused from the leukemia (leukemia can be very painful and cause sore bones and joints due to the packed leukemia cells in the bone).  She got to play with Sinatra for a bit on the play mat in our room and thought Sinatra was doing great.  After the physical therapist left Sinatra was walking the hallways of the 5^th floor and even pushed a wagon around the floor. This was such a great step!

Today we also had a few pleasant surprises at the hospital. Early in the afternoon we had a family stop by with a shopping cart of toys that they were handing out to all of the kids on the floor.  They mentioned that their son, who was no more than 10 years old, had been diagnosed for leukemia and was treated at CHOC for 3 years ago.  It was refreshing seeing a young child that had gone through this living a completely normal and healthy life. It definitely keeps us positive. We love CHOC and couldn't be more grateful that our baby is getting her care here.

We also had a patient’s family bring in homemade tamales for everyone on the floor for Christmas Eve dinner. The giving season is clearly here and we even received some special packages at home from an anonymous gifter. It a Christmas Eve we will never forget.

Santa won't be coming to the Cornelius household tonight but will make a visit once we are all back home together.

Walking!

Sinatra did a lot of walking today!! She found a fun toy in the 5th floor lobby to play with and is very tired now!

Today was a great day for Sinatra. She woke up happy and talkative and even started walking and standing a little bit again. Walking used to be one of Sinatra’s favorite things and she hasn’t done it for about two weeks now.

We received her blood levels from the night before and they looked ok. The one level that is worrisome is the ANC (absolute Neutrophil Count) which was 448 (12/22 it was 1044). It is preferred that this number be greater than 1000. If it is under 500 there is a high risk for serious infections to occur. In the hospital this isn’t as much of a concern as it would be if were at home. When the ANC levels get this low we would essentially need to keep Sinatra in a bubble in order to keep her safe from infections. The hope is that this number will bottom out soon and we will then see it rise again.

The generosity of others both at the hospital and from our family and friends has been such a surprise and is a little bit overwhelming. Today at the hospital there was a toy giveaway that allowed us parents to pick out a few toys for Sinatra and even Siena. We ended up walking out of that toy drive with a garbage bag full of toys and a few blankets, hats, stockings, books, puzzles, etc. The volunteerism and philanthropy at CHOC is amazing and it makes us think about how we will do this for others when our journey through treatment ends. So many people and so many groups have been donating time, money, gifts and services.

Healing Smiles

Sinatra looking out the window of her new room with the IV lines in tow! She hasn't been walking for over a week so we enjoy when she stands up because it will help keep her muscles strong.

Looking at her, you would not even be able to tell this kid has cancer.  There are moments when its all so surreal. Today was just about recovering from the intense days she has had so far and trying to get active. You can see that now that she is getting her color back and feeling better it will be important to keep her moving around a bit more. 

We went to explore the 5th floor Oncology toy room today and have made several rounds walking in the halls, IV in tow, walking by the nurses station and looking at the the holiday decorations. 

We also began sharing what has happened with our family with others today. Our friends, co-workers, family, have all showed us such tremendous love and support. the kind words, racers, and thoughts are making a difference for us in so many ways. Stories, advice, and recommendations from others makes us feel like we can really fight this battle!

First Treatment

 Sinatra snuggles with Mommy during her first treatment.

Today was an emotional day.  We are not sure that there is anything scarier than seeing chemicals injected into your child's body that you know are going to break it down. Literally watching the clear liquid move through her IV into her body and waiting to see her reaction was the most anxious we have ever been. 

Sinatra received a drug through her IV called Vincristine, which has common side effects like constipation, stomach pain, and hair loss. She also began a oral steroid medication that tastes awful and  that she will have to take twice a day, for the next 29 days called, Dexamethasone. The common side effects for this one are increased appetite, "roid rage", and full or round "moon" face. The doctor said the kids sometimes look like little chipmunks when there are on this medication. 

In true Sinatra fashion, she smiled and acted like nothing was going on and was just happy to snuggle with her mommy.  She also didn't show any of the side effects of the medications yet so that's great. She is remarkable and we pray that she will be this strong everyday. 

Information Overload

Tonight Sinatra was full of smiles as she ate dinner.

Today we began the two year treatment journey to fight to cure Sinatras Leukemia.

We received a more detailed diagnosis today of Sinatra’s Leukemia. We found out that she has A.L.L (Acute Lymphoblastic Leukemia) B-type.  

Sinatra had a procedure to implant a port (PICC Line or peripherally inserted central catheter) into her chest for future chemo therapy treatments. In addition to the PICC being implanted, Sinatra had a spinal tap done to pull spinal fluid for testing, and they also injected chemo therapy into the spinal column. This procedure took two hours to complete. 

As we waited patiently for news that her surgery was complete the surgeon comes walking out into the waiting room to see us. Our hearts sank and we worried that something was wrong. Luckily the surgeon only wanted to tell us that things went well, but long, because the line had a hard time going down the proper artery for some reason. They did get it installed properly after a few attempts.

Sinatra ate like a champ again and then went right to sleep.

We also had a parent/doctor meeting today with our Primary Doctor, Dr. Huynh. She did a phenomenal job sharing with us the layman's terms around Leukemia and what it means practically speaking once we go home. The staff here is so knowledgeable and caring and we know we are in such great hands.

We have taken in so much information and are beginning to right everything down. The knowledge helps us feel more informed and maybe in some ways feel like we have have some control over something in all of this, but there is just so much. Tomorrow Sinatra starts her chemo therapy treatment. It will be three stages and take about 24 months. 

Bad Dream

On this, her second day in the hospital, Sinatra had surgery to get a bone marrow sample to confirm the diagnosis of Leukemia, (A.L.L.)

We woke us this morning in the hospital and heard from the overnight nurse that Sinatra's levels were good and the platelets were high enough to perform the bone marrow aspiration procedure. This procedure would help confirm Sinatra's diagnosis.

We walked through the two year old, pristine, hospital wing into the pre-op area. When we arrived we were greeted by multiple consent forms for the procedure and possible studies that Sinatra could be apart of if we agreed.  Thank goodness we are on the same page about this kind of stuff because making decisions like this for your kid is not easy. We opted in for two separate studies because they were low intrusion to Sinatra since she was already having the procedures and they provided additional benefits for her depending on the diagnosis. we also both believe that supporting research where you can can only serve everyone in the long run.

During pre-op Sinatra was nervous and it was hard to keep her calm. When it came time to lay her in the bed to be transported to the operating room, she didn’t like that at all. Luckily one of the Child Life specialists quickly came over playing cartoons on an iPad and blowing bubbles. The bubbles did it and really calmed Sinatra down and us too. Seeing her happy makes us happy.

A bone marrow aspiration takes approximately 15 minutes but in total we were waiting for close to one hour.  This was one of the hardest moments of this process so far because it was the first time we had to let Sinatra leave our side. We were very worried about the anesthesia because she had never been on it before and we obviously had no idea how she would react.

Recovery room time was quick and it was a god thing because our poor baby was starved! She ate all of the fruit that we could order and feel fast asleep with a very full belly.

Within a few hours of the procedure the doctors and nurses came into our room and informed us that the diagnosis was Leukemia. We are shocked, and it feels like a bad dream.  

We know that we will do whatever it takes to cure Sinatra of this cancer. Things are about to move very quickly. 

The Day Our Lives Changed Forever

At 9am Jenn received a call from our pediatrician, Dr Mike, that he had the results of Sinatra's blood test that were administered the day prior. He said "you need to take her to the hospital right way, and she is going to need to have a procedure..."



Sinatra and Mommy just before we were admitted into CHOC.



By 11am we arrived at CHOC, Children’s Hospital Orange County. After a quick admission we were brought to room 557 on the Oncology floor of the hospital.  Within 30 minutes we had multiple doctors and nurses visiting us and asking us for Sinatra’s medical history, checking her vitals, and putting in an IV line on the top of her right hand. Things were moving really fast.

Dr. Mike told us that we were going to have a bone marrow aspiration done at the hospital, but when we got there the doctors told us she wasn't stable enough to have it. She needed blood and platelets ASAP.  When we got here we met Dr. Neudorf, the attending physician. In order to stabilize Sinatra, she had to receive three blood transfusions totaling 100 mg. The transfusions started in the early evening and continued until the next morning. A fourth transfusion of platelets in the came in the morning to ensure her levels were stable for surgery. 

Based on what the Doctors had seen that day they had a hunch, and told us different possible diagnoses that may follow. The two primary possibilities were A-Plastic Anemia and Leukemia. They said things like , "If its Leukemia..." at least a half a dozen times today. We are mentally preparing for the worst. 

We are crossing our fingers that they are wrong. We will find out tomorrow.