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.