Time out

Sinatra enjoying the toys at the OPI center

After our long week off when Sinatra was sick, we completed our first week back on chemotherapy. That meant a lumbar picture and chemo on Tuesday, and then chemo Wed- Fri. Because the RSV knocked out Sinatra's ANC, we had to begin to withhold the MP which is normally an at home, orally administered chemo.  Even though reducing her chemo will reduce her side effects and make her feel better in the short term, as parents we don't love not giving it to her and would almost rather have her have it in hopes that it has a better chance of killing the cancer.  Regardless, we will continue to listen to the doctor and do as we are told.

The parenting dilemmas continued this weekend. We had to give Sinatra her first "time out".  We have been avoiding this but unfortunately Sinatra is a typical 17 month old in every way but her cancer and she is beginning to test her limits. We have probably been a little more than passive when it comes her but discipline is such a hard thing to be consistent on when your kid has cancer. Our doctor has encouraged us to treat her normally and we have to be fair in having the same expectations for both of the girls, but it was awful to put her in time out and watch her cry.

After her timeout, as our normal procedure, Jenn went down the hall to tell her why she was in time out and to have her say sorry and when Sinatra replied with 'Sorry Mommy' Jenn lost it and started crying.

As far as treatment goes, we have two more weeks left in this phase (called "Consolidation") of chemotherapy and then we start the first experimental section of her treatment.  After the 30 days of the 'study' treatment plan we get our test to see how Sinatra is responding.  Keep your fingers crossed!!

Clicking our heels three times FOR DAYS!!!

Sinatra's Hospital room. 

The good news is that we have finally been discharged and went home today.  After five nights in the hospital it was such a good feeling to have the doctor say we could go home.  It is amazing how stir crazy you can go when you are stuck in a less than 100 square foot hospital room for five days. We literally couldn't leave the room and during flu season we are not allowed to have visitors.  There are only so many times you can look out the window or play with the same toys or read the same books. We are amazed at how well Sinatra did during this past week.

Each day we spent at the hospital we would think that the signs were good and that we would be going home the next day but it never really worked out.  The doctors were waiting for a few things before we could leave. They wanted to make sure Sinatra had no fever, she was breathing with no issues and all of her blood levels start turning around and showing that they are rebuilding.

Sinatra's levels hit some new lows this week and it took until Wednesday night to have any of them show any sign of recovering.  Sinatra's ANC hit an all time low this week at 102 which is a very scary number. This number means that her immune system is at risk. As a guideline you want an ANC higher than 1000. 

Sinatra takes a nap with Daddy while we wait  to be sent home

For now we are scheduled to restart our chemo on Tuesday after a quick check up on Monday at the clinic.  Lets hope that we can get started and try to get a routine back in our lives. This week was a good lesson for us to realize that these weeks really throw a curve ball at our family and we have to be ready for them.  Hopefully we can find a way to continue to be productive when we have these inevitable hospital stays in the future.

On the mend, but..................very...............slowly...

So here we are, night number five, still in the hospital after thinking everyday this week that we might be coming home. Sinatra is on the mend, but her blood counts were hit pretty hard with this RSV and are taking a little while to climb back up. Her cough is better, she seems happy, has negative cultures, and hasn't run a temperature since Monday morning but her white blood count and ANC are still too low to get discharged.

We are going a little stir crazy because we still aren't able to leave our less than 100 square foot hospital room and during flu season we cant have any visitors (until March 31st). We are pretty sure that Sinatra has played with just about every toy that the hospital has on this floor and we spend at least half of the day by the window looking outside. Some days she has resorted to playing with a cup filled with coffee creamer packages and the handles on the hospital crib that make the mattress go up and down. Desperate times.

Sinatra's play space in our room

In thinking about going home, we have spent some time talking about tweaking our strategy to help minimize the spread of illness as best we can by creating some separation for the girls and trying to teach them to wear masks when someone is sick. Seems like a stretch but it could be really helpful if we could get the girls to be okay with it. 

One major tricky part about all of this is that we are both still working (trying) and we are trying to figure out how to get our work done through calls, meetings, etc when things are just so difficult to plan.  This week for example, we both had a very defined plan of who was where, on what days, at what hours, but the fever hit Sunday and our week has been shot since. We both have quite a bit of anxiety about how to manage everything and do the best we can. Thanks to all that are reading this that are impacted by our crazy reschedule requests and inability to plan. XO

Superbowl Sunday!

Super Bowl Sunday started out as a great day. In the morning we dropped off Siena at our amazing friends Carmen and Brandon's to play with their kids Max and Isla, while Sinatra stayed at home with Grandma Gloria. Then we went to downtown Huntington Beach to run the Surf City Half Marathon for the second year in a row. We both had a great race in the morning and achieved our own personal records for the 13.1 miler. As we were celebrating and enjoying a beer in the Surf City Race Beer Garden we got a call from Grandma that Sinatra had started to vomit. We immediately went home as this was the first chemo side effect we had seen this week. 

Once we got home Sinatra seemed fine. Our friends came over to watch the game and by half time Sinatra was losing steam and wanted nothing more than to cuddle. By the third quarter of the Super Blowout aka Super Bowl, deep mid-cuddle with mommy, she started getting very warm so we took her temperature. Sinatra's temperature started at 100.5 which means we had to start timing it and if it was still between 100.5-101.4 in one hour we would have to call the Oncologist.  We checked the temperature 35 minutes later and it hit 101.6 which means an immediate call to the Oncologist (101.5 and above means pack your bags, start the car and get to the ER). As we suspected, because they had warned us about this, we needed to take Sinatra to the ER immediately to be seen. Within minutes our friends were helping us clean up, Link was getting instructions from the doctor and Jenn was packing to get ready for an overnight at the hospital. 

Sinatra vomited again for the second time today as we waited in line to register in the ER and we were quickly taken into an isolation room (closed off from the general population) where they take oncology patients, since the ER is a germ fest. We waited in the exam room for more than 3 hours and during that time were seen by several nurses and a doctor. By 11:00 pm we were finally admitted to the Oncology floor and Sinatra was beyond exhausted and grumpy after all of the poking and prodding. Who would have thought we would be back on the cancer floor so soon after just having left barely one month ago. After arriving into our fifth floor room Sinatra was examined several more times and was hooked up to receive oxygen, IV for fluids, and some antibiotics. By 5:00 am this morning her fever had broken and we finally started to get some sleep.

We spent the rest of the day in our isolated room with doctors and nurses coming in and out in full protective masks and robes checking her vitals (imagine the scene from ET when the government agents quarantined the house after they found ET and Eliot in the creek ). They ran another VRP and found that Sinatra has a virus called respiratory syncytial virus infection, usually called RSV, which has a lot of the same symptoms as a bad cold.  Like a cold, RSV is very common and very contagious. Most children have had it at least once by age 2. RSV is usually not something to worry about, however it can lead to pneumonia or other serious problems in some people, especially babies. Like a cold virus, RSV attacks your nose, eyes, throat, and lungs and is spread when you cough, sneeze and share food or drinks.There are many kinds of RSV, so your body never becomes immune to it. You can get it again and again throughout your life, sometimes during the same season.

Sinatra is now on antibiotics and we will be hanging out at the hospital for a few days until she is recovered. This also means that our treatment will be paused until the doctor feels that Sinatra is healthy enough to begin chemo again. 

A very long day...

Sinatra began her first day of the 'Consolidation Part One' phase of her treatment today.  Consolidation will be a very difficult phase of Sinatra's treatment.  In this phase Sinatra will be going to get chemo four times a week for the first two weeks and has lumbar punctures (under anesthesia adding chemo to the spinal column) on Tuesdays through 2/18.  The first of the four days in a row she will be getting four different types of chemo.  Needless to say we are already counting the days until this phase is complete.

The first day of treatment started by having Sinatra fast 8 hours before her lumbar puncture procedure at 9:30 am. This fast was much easier since we aren't dealing with the 'roid rage' but it is still hard to have her fast for so long because she gets hungry and doesn't understand why we won't feed her.  The good news was that after Sinatra ate her dinner (only a few bites) she went to bed and slept through the night. This was the first night we have had a full nights sleep in over a month so we were thrilled!

At breakfast time we didn't want to rub it in that she couldn't eat so Jenn and Siena went to breakfast before school and Link didn't eat because he was taking Sinatra to OPI for the procedure.As soon as we arrived at OPI just after 8:00 am the nurses instantly hooked Sinatra up to IV fluids because one of the chemo treatments (Cyclophosphamide) that she was receiving today is extremely hard on the bladder and kidneys so they have to hydrate her two hours prior and four hours after administering the chemo.  

While hydrating we were able to weigh in again and Sinatra has lost another 2.6 lbs since her last weigh in on Wednesday 1/22. She is losing weight almost as quick as she gained it on the steroids, which the doctors prepped us for.

Within two hours of getting to the OPI Sinatra had already been put under anesthesia, gotten her lumbar puncture (Intrathecal Methotrexate), received a second type of chemo therapy (Cytarabine) via IV  and was prepping for the third type of chemo by continuing her hydration.  After another hour we started the third chemo (Cyclophosphamide) which takes one hour to completely run. While we were running this chemo Sinatra couldn't stand still and was out and about walking the floors of the OPI and playing with whatever toys she could find. This is a great sign but we are told that the effects of the chemo won't be truly visible until 3-4 days after the treatment starts.

By the time the third chemo was done Jenn had come in to the OPI to relieve Link for the rest of the day.  At this point Sinatra was just receiving IV fluids and being monitored. Thankfully she was able to fall asleep in the chemo chair and slept for a couple of hours. 

When Sinatra got home it was after 6:00 pm and we had to feed her dinner quickly because her fourth and final chemo (Mercaptopurine) for the day was to be given to her 1-2 hours after she eats dinner.  The problem is her appetite is clearly waning now and by the time we got home from OPI she barely ate anything at all.  After trying to entice her with a buffet of food we gave up and got her in for her bath and ready for bed. 

Its crazy to watch her run around and seem so happy after she had such an intense day.  Sinatra literally runs around the house hyperactive, yelling, smiling and laughing.  It is a very good thing to see but also very confusing for us as parents. It makes it difficult because it is very easy to slip into a state where you see her acting so healthy that you forget for a moment and think that she can just play and be normal. Tonight and for the last few days Siena has had a really nasty cold with a cough. We have been trying to keep distance between the girls but when you see them so excited to see each other and want to cuddle and play its difficult because we have to try to create more space for Sinatra. We try to stay as aware as we can and keep reminding ourselves that its 8-9 months that we have to be to be very disciplined with how we manage and take care of Sinatra and her Leukemia.

She PASSED, but with a C.

The long awaited results of Sinatra's marrow test are in and Sinatra passed her MRD test!!

Even though she passed the results weren't the .01 that we had hoped for but were higher at a .11. This again is a roller coaster of emotions because we really felt confident that Sinatra would pass this with a .01.  Even though these results aren't ideal, they are good enough to move her ahead to the next round of chemo. However we now have to start the conversation that we were dreading, a possible bone marrow transplant.  The transplant conversation is very early but Dr. Huynh wanted to us to start the process to be prepared in case we need to go that route in the next few months.  We will both get tested and well as Siena to see if we are a match, and our doctor will begin to explore the database to see if there might be a match out there as well.  If we aren't a match we will let you all know in case you ever considered being tested.

We will begin the Consolidation phase on Monday and after 60 days in that treatment plan, with two different rounds of chemo we will have another bone marrow aspiration to test her MRD again. This time she must have a .01 or lower or else the transplant discussion becomes more than just a discussion.  

Today we also found out which treatment plan we will be following. As discussed in our previous post we had the option of staying on study which gave us 3 different plan options (randomly selected).  We decided to stay on study after a lot of thought and a long question and answer session with the doctor today.  Once we decided, she was able to confirm that we were randomized to the experimental arm #1. This is the medium intensity treatment plan that has an additional two medicines introduced into the plan. It is a pretty intense treatment plan which starts next Monday and has 4 days in a row of chemo treatments for the first two weeks. The first treatment of the 4 day sessions will require Sinatra to be at the clinic for the entire day to monitor her vitals and keep her hydrated with IV liquids.

Sinatra reading her MRD results!

For some more upbeat news.  Sinatra is doing so good now that she is off steroids.  She is so happy and is laughing and playing constantly.  She only woke up once last night which was her best night since being on chemo therapy. When she weighed in today she had lost about 1 pound since last Friday which is great.  We also had the wound care specialist look at her rash again and it seems that her horrific diaper rash is getting much better. All of these little wins throughout her treatment feel great and keep us optimistic.

We will be adding a tab in the blog that outlines her treatment to give a more comprehensive view of the whole plan and will be easier to follow. Stay tuned for that.

BIG decisions

Her appetite has slowed down

Four days post steroids and Sinatra is doing great. Her 'roid rage' appears to slowly disappearing, the cravings have subsided, she is eating less, and she is becoming more active every day. Just like our doctor told us, we are beginning to get our happy baby back. Since the medicine takes time to fully work its way out of her system we are still experiencing the night time wake ups and the skin sensitivity which makes the diaper rash tough, but she is truly improving every day. Its so nice to hear her laughing again and playing with her sister.

Whats on our minds now is our next big decision. When Sinatra was initially diagnosed with A.L.L. we were asked by the Oncology team at CHOC if we would be willing to have Sinatra be 'on study' during the first phase of her treatment. At the time when we were asked, we learned that the risks associated with being 'on study' would be minimal as they would only need to take an additional sample of her bone marrow and sharing her personal information (age, ethnicity, etc) for research purposes. Given all of this we read through and asked questions about the consent forms, and agreed. We both are supportive of research and felt like if we could contribute to Leukemia research with no risk for Sinatra, that it was an easy choice.

Now that Sinatra has completed the first phase of treatment, called Induction, we are faced with the decision of determining if she should stay on study. We shared with you a week or two ago that the doctors discovered a genetic abnormality called MLL. Because of this, Sinatra's chances of successful cure rate go from the typical 90% for standard risk A.L.L, to roughly 50% because of the MLL abnormality.

So now comes the tough choice if we decide to stay on study. Assuming Sinatra's passes induction and has a positive MRD result (we still haven't heard yet), we will have 3 options for treatment, two experimental treatment arms and the standard treatment that we spoke of before.  Essentially being on study and having the option of receiving experimental treatment could increase Sinatra's cure rate significantly but because it is a study those results aren't available yet. Basically what happens is if we opt in, Sinatra gets put into a pool of patients and will randomly get assigned to one of three options for treatment. 

1. Standard treatment used for all ALL patients. Known, tested, but in her case only 50% cure rate with the MLL abnormality.
2. Experimental Arm 1.  More intense than the Standard treatment and introduces 2 additional chemo medications that may help minimize the risk of relapse but have increased and potentially serious side effects. 
3. Experimental Arm 2. Most intense of the three treatment options and adds the two chemo drugs from Arm 2 plus an additional medication with such serious side effects that it makes receiving the chemo an inpatient procedure because the patient needs to be monitored 24/7 during that period.

*Both of the experimental treatment plans are currently used as medication for patients when they relapse so the thought is that if you hit the cancer hard with these meds now, perhaps the relapse won't happen.

This decision is weighing very heavy on us because we want to do whatever we can to give Sinatra the best treatment we can but also worry about her ability and ours to manage the side effects.  There is also the fear of the unknown because we don't really know what  treatment is truly the best for her.  We are reading and learning so much that it feels like we are cramming for the most important exam ever, to have as much information as possible to try and make an informed decision.  The good thing is that if we opt in we can change our mind and be removed from the study at any time, no questions asked. The other worry is whether or not our insurance will cover the cost of these experimental treatments. There is just no way to know what is the right decision when your dealing with your daughter's life. 

We have our next family meeting with our assigned team of doctors, nurses and case workers on Wednesday 1/24.  This meeting is where we will learn what Sinatra's MRD is and where we will need to share our decision about being on study.  Keep sending your good vibes and prayers our way because your support means the world to us.

D Day

D Day has come and gone and we would be willing to pay any amount of money to never have a night like that again. Lets walk through the events leading up to the meltdown.

We went into Thursday night somewhat confident, because half of the nights during the week leading up to D Day, Sinatra was able to sleep from 1:00 am to 4:00 or 5:00 am.  If she could do this on D Day it would be great because then we would only have to keep her calm for 4 hours leading up to the procedure.

Thursday night was going great. Sinatra had a great dinner, nice bath, was happy, and went to sleep easily.  As is the new standard, Sinatra woke up at 10:30 pm to be fed and have her diaper changed.  Proactively, we woke Sinatra at 12:30am to feed her the last big meal before her procedure at 9:30 am the next morning.  She ate a lot of food and went to bed quietly.

Then 2:00 am happened! 

S*!T......... Sinatra woke up with a poop, and D Day is on!!

Of course since Sinatra was up, she was starving, and the odds of her falling asleep were worse than the lottery.  We tried everything to keep her calm. We tried clear liquids but she only wanted milk, we tried playing but she wanted to go to the kitchen, we tried watching Mickey Mouse but she wanted the food network.  We couldn't win. We put her in her crib hoping that she would get tired from crying so aggressively that she would fall asleep, but that didn't work.  We tried everything but Sinatra was on fire all night. Imagine dealing with a child that can't talk, is extremely hungry, on steroids, very hungry, has a diaper rash that almost had her admitted to wound care, did I say hungry, and two parents that are so tired and emotional that they look like Eeyore walking around the house trying to cheer Sinatra up.  

Finally, after what seemed like four days, 6:00 am arrived and we decided to drive her around Huntington Beach. It actually kept her calm until we had to stop the car at a red light, then she would go crazy.  We decided to create a route around Huntington that was all right turns to keep from having to stop the car.  At 7:30 am we decided to head to the clinic a little early for our appointment.  When we got there Sinatra was so mad we couldn't get a good blood pressure reading or take her temperature. Some good news was that Sinatra didn't gain any weight since her visit earlier this week. We also got the news that her ANC was above 3400 which is always good to hear.

At the clinic prior to the procedure. Wow does Sinatra look angry!

When it was time to start her procedure, it seemed very odd for us because we were used to having these procedures performed in the hospital. Today and for the future procedures we will be at the outpatient clinic which doesn't 'feel' like a hospital for some reason. It has all of the equipment, doctors and nurses but there is a weird feeling that it isn't an actual hospital, its hard to explain.  Sinatra finally got her happy drug around 9:35 pm and started to calm down. The next part was unexpected and probably one of the hardest things we have had to experience so far. The doctors wanted us to stay in the room and hold Sinatra while they sedated her.  It doesn't sound to extreme but to watch your daughter slip into an unconscious state is a very hard thing to stomach. This was extremely emotional for us to be a part of and we will never forget these two minutes and how painful it was to watch. 

After about an hour the procedure was done and we were allowed to go see Sinatra in recovery.  The procedure was a success and they got the bone marrow sample they needed to test the MRD and were able to put the chemo therapy into her spinal column.  

When we were debriefing with the doctor about the procedure and what comes next we asked to confirm if Sinatra is done with the steroids that have been causing such havoc on her. We had told Sinatra the night before that it was her last day of steroids, but the doctor told us we had one more day to go........uggggghhhhhh.  We are looking forward to the 'non-roid rage' Sinatra to be back with us.

As for the results of the MRD test, our doctor would normally wait for our next parents meeting, which is on Wednesday January 22nd, to tell us the results, but she knows that we will be a nervous wreck until we hear the results so she said she will call us the second the results are in. 

We will post the MRD results as soon as we get them. Stay tuned...

The Battle of the Diaper Rash!

Sinatra pant-less letting her rash air out and waiting for her blood transfusion

This week will forever be known as 'The battle of the diaper rash'. The week started when Grandma Gloria joined us for what was supposed to be short routine labs visit on Monday morning, it was her first time visiting the clinic with us. This visit was supposed to be a quick and easy visit;  check height, weight, blood pressure and take some blood to get her CBC for this week. Little did Grandma, or any of us know we would be there for almost 6 hours! During this visit we learned that Sinatra weighed 29 lbs, a gain of another 2 lbs over the weekend and totaling almost 10 lbs since December 17th (we are trending at nearly a lb. a day).  and as we waited for our labs we had the doctor check Sinatra's bottom.

While waiting for all of the scheduled checks at the clinic, we had the doctor look at Sinatra's booty for the terrible diaper rash that developed last week.  We shared with the doctor that the rash started suddenly and grew rapidly early last week and while visiting the clinic then, we were able to score some hospital grade goodies from one of the nurses. We told the doctor that we had been diligent in obsessivly changing her and applying every cream and treatment known to man but the second Sinatra poops, all progress is lost and the rash is worse and has open sores again. Since it takes nearly five minutes to do a simple diaper change, because of the many things we need to do, we are changing her diaper nearly every hour and all we can think about is 'the diaper rash'! Oh, and to add to the fun, because Sinatra has gotten so big we had to buy new diapers and we are into a size 6 and may be buying adult Depends within a week. We truly didn't know that they make children's diapers as big as a size 6!!

Because of the rash we had to schedule additional visits at the clinic on Monday and Wednesday of this week and will be back Friday for her procedure. There was even a discussion of actually admitting her to the hospital to have round the clock wound care to try to make it better. Thankfully we aren't there yet.

Sinatra also received a blood transfusion today in order to get her as healthy as possible for her procedure this coming Friday. She will have a lumbar puncture to again check her spinal fluid for leukemia  and add more chemo therapy to her spinal column. She will also have a very critical bone marrow aspiration (she has had this procedure twice so far) to learn if Sinatra's cancer is in remission or not.  Our hair has much more grey in it this week just waiting for the results of the report. Fingers and toes are crossed!

Hard To Function During Induction!

Today we had Sinatra's second to last Chemo appointment in the 'Induction Phase'. We had blood drawn today and her ANC was up to 3900 which is the best its been since she was diagnosed, we were thrilled! The hope is that in one week when she returns for chemo and for her next procedure, Sinatra will be have completed the induction phase and will be in remission. We are looking for a .01 MRD; fingers crossed! We do have to remind ourselves that even though she may be in remission, the treatment that she will continue to have for the next 8-9 months will be much more difficult than these first 29 days.

Daddy and Sinatra enjoying some fruit at Chemo

During our chemo appointment today we were desperate to get some answers on two key issues this week. The first is Sinatra's horrific diaper rash that has developed in the last few days, and the second issue is her incredible weight gain.  

We have found that it is nearly impossible to get ahead of this rash because Sinatra's constant eating and drinking causes her to go to the bathroom almost every 30 minutes and that just makes the rash worse. We have tried everything to try and fix it including, corn starch, A&D cream, Desitin, Petroleum Jelly, bare bottom and now the hospital grade ointment and bandages.  Fingers crossed this heals soon, it has to be so painful and we feel so bad for her.

No one in the Cornelius house is sleeping. Because of  Sinatra's steroids she wakes up a minimum of 2 times a night, but has woken up every hour on some nights.  We have to get up when Sinatra does because the Dr. says that the steroids cause her to have an insatiable appetite. We are trying to be responsible parents by both giving in to try and keep her satisfied and trying to give her healthy foods. What's difficult is that she has gained soooo much weight so fast and it makes us really worried about her overall health. She has literally gained 1 lb over a two day period and a total of 5 or so in the last two weeks. Every time we ask the Dr's if there is a way to keep her full or suppress her appetite they say "no way" and "keep feeding her".

We are predicting a very bad night coming up very soon, we are calling this D Day!!  Next weeks appointment is a procedure to test her spinal fluid, add chemo to her spinal fluid and test her bone marrow for any remaining leukemia. Since Sinatra will be under anesthesia for this procedure she can not eat for 8 hours prior, which will be so hard since she has a hard time going 2 hours without eating. This will be bad news for the Cornelius household Friday morning from 1:00am-9:00am (procedure is scheduled at 9:00am Friday).  Everyone please be sending thoughts of or actual Nyquil and Ambien to our house starting Thursday after dinner!!! We are going to need it.