Day 4 - Cycle 1

Saturday, September 14th

Today was a rough day for our sweet girl. Around 3:45 am she threw up and started having diarrhea. IV Benadryl helped with the nausea, but it didn't help with the other. She has battled with an upset tummy all day long including severe stomach cramps. She hasn't eaten or drank anything all day, and she has felt just overall terrible.

She started received her Methotrexate around 9 am, and it took about 4 hours to administer. An interesting fact about the medicine is that it turns your pee neon yellow with minutes of receiving it. They keep an extra close eye on urine output to see how quickly the medicine leaves your system, so we have spent the majority of the day running to and from the bathroom, measuring, recording, etc. At 9 am tomorrow morning, she will begin receiving Leucovorin to protect the body from the harsh side effects of the Methotrexate.

Since she was feeling bad, Avery was very resistant to everything we wanted/needed to do to her today. We have been working to offer her 2 choices when available(for example, do you want your blood pressure taken on your arm or your leg?), but we have also had to teach her that "No or Neither" is not an option. Vital checks and medicines can not be turned down as they are crucial to her health. I think she is very slowly beginning to see that by being a willing participant, things get done much more quickly, and then she can be left alone.

The nurses have begun to educate us on what to expect when we get to go home... and let me tell you, it is pretty scary stuff. The bad day we had today is just the beginning, and it will likely get much worse before it gets better. Knowing that Avery will suffer some terrible days and there is nothing we can do to prevent them leaves you feeling helpless and vulnerable. Shon and I are both thankful though to have this information to begin mentally preparing the best we can.

We can know longer follow the rules of having a "healthy kid". A fever could occur at any time, and a fever reaching 100.4 will land us in the hospital every time. They've given us thermometers to keep in our cars, purse, etc to be able to check her temperature any time she feels warm. We have medical cards to carry with important numbers and instructions for medical staff when we need to go to the ER. We even learned that the preferred access for her port is a 20g Huber needle 3/4" long. There are signs to watch for indicating low platelets, infection, and a whole host of other complications that may arise. We are also moving into cold and flu season with 2 other kids in school who can unknowingly bring germs and illnesses home that could be life threatening to their little sister.

Please continue to pray for:

- Side effects of the medicines to be minimal and manageable

- Restful nights and days for Avery

- Anxiety of being in the hospital and having little control of the situation to subside

- Big sisters who are scared and unsure how to process all of this

- Protection and safety from illnesses and germs when we get to go home

- Feelings of helplessness in a difficult situation