35 Days

35 days, that’s how many days Sophia was in the Hospital. This is a short version of what has been going on.

Hospital trip #1 (4 days) - It all started the evening of January 11th, 4 days after her 2nd birthday. Our good friend, Jennifer, was visiting us that night and brought over dinner. Besides not wanting to eat Sophia seemed to be fine, she was her shy/silly self. When it was time for her to go to bed we put her down and let her go to sleep. Maybe about an hour after she went to bed I thought I heard her so I went to go check on her, the room was dark but I could smell something awful smelling so I turned the lights on and she had vomited all over her self and her bed. I went to tell hubby and between us and our friend we cleaned her up. The rest of that evening until early morning she kept vomiting about every hour. I had called the HEMOC (Hematology/Oncology) doctor on call and he just said to keep her hydrated and watch her and to call back if she had fever. She never got fever but since she didn't stop vomiting we took her into the ER. She was admitted that day and stayed there for 4 days. They diagnosed her with dehydration so they basically just hydrated her over those 4 days and sent her home. She came home on Tuesday January 15th and she was doing okay the next several days but she wasn't her normal self. 

Hospital trip #2 (20 days) - On Friday January 18th Sophia woke up with a fever. It was high enough to have to take her to the ER. Once there they put her on fluids and pulled blood to run test to see what was wrong. We got a bit worried for Sophia because between Friday the 18th all day and Saturday the 19th most of the day she was just waiting in the ER. Basically she wasn't well enough to go upstairs into a room and she wasn't critical enough to go to the PICU (Pediatric Intensive Care Unit) She never ended up having to go to the PICU, thank God. What ended up happening was that Sophia had that stomach virus that was going around on top of an infection in the blood. The infection in the blood was most likely due to her PICC line but it also had several ways it could have enter the blood stream. They pulled out her PICC line and had her on an IV since she had no line in her to administer the treatment. Things got pretty tough for our little Sophia, she was fighting a cough with phlegm that needed to be suctioned out of her throat, she was on several medications through her IV on top of oral meds, and she was being poked daily for blood work. Our poor little girl was turning black, blue, and purple everywhere they either failed and succeeded at getting blood. Then the HEMOC doctor told us that she would need to be treated for 3-6 weeks depending on the results to all the test they did on her. All the test came out great and her blood work was coming out negative for the bacteria that was found. They did find that she had a blood clot that was old so they left it alone and said it would go away on its own. Another thing that happened was Sophia had several bumps on her head and back so the dermatology team came and did a biopsy on one of the bumps on her head. That was an ugly experience, they had to stick a needle in her head to numb the area then take a sample of the bump and then stitch it up. Ugh, it was pretty bad but it turned out to be acne so they left it alone. Since Sophia was getting better they decided that they would send her home but before that she would have to get another line so that I can administer her antibiotics and chemo at home. We were deciding whether to go with another PICC line (an external line) or go with a PORT (an internal line) Loooooong story short is she had to get another PICC line. Sophia was sent home on Wednesday February 6th. She did well over the next several days except for some pain at times in her arm where her PICC line was. Come that Friday the 8th we would have to go back to the hospital yet again.

Hospital trip #3 (11 days) - Once Sophia was home the plan was going to be me having to administer the antibiotics every 6 hours along with her chemo at 9:30pm every night. Come Friday the 8th around 1am I had to give another dose of her antibiotics so I prepared everything since she was sleeping and once I was ready to give her the antibiotics her PICC line didn't want to work. I tried everything I could so I called the HEMOC doctor on call and was advised to skip that treatment and call the clinic when they opened. I did so but before calling I tried again to see if it would flush, it didn't  I called and was advised to bring her in since she was still on treatment she needed to be given her doses she missed since I could no longer do it at home. Once we arrived at clinic the first thing they did was pull out her PICC line (here we go again with line issues) and they put an IV on her to be able to give her the antibiotics. We were told right away that she would have to be admitted yet again, ugh! They admitted her pretty fast and said since the PICC line wasn't working for her they were going to go ahead and put the PORT in that coming Monday the 11th. Monday comes and Sophia goes in to have this procedure done and what was supposed to be about an hour long turned out to be almost 3 ½ hours long. It turns out that the surgeon had problems placing the port and we were told that she literally almost called the whole procedure quits. Normally a person get two incisions made, one on the neck and one on the chest, Sophia got three. She got two incisions on the neck and one on the chest. I hate that it had to happen that way. I was so hesitant of her getting the PORT in the first place because I didn't want Sophia to have any scars but they said it was so small and now she has three cuts which means three scars. I know eventually I’ll get over it but right now I’m still pretty upset by it. They also had to give her a blood transfusion since she lost a lot of blood. I couldn't believe it, everyone told us how easy this procedure was and there could be complications but no one we talked to had ever experienced any issues. A surgery nurse told us that she thinks Sophia holds the record for the most difficult port placement, I asked her if she gets an award for that and she replied with a NO and that she wasn't kidding and I told her either was I. Normally this procedure is an outpatient procedure but not in Sophia’s case. Since she had some trauma during surgery she would have to stay longer so they can observe her. Her whole left shoulder was swollen from them having difficulties inside. She was also having breathing issues and they didn't know why she was breathing so fast. They said she might have had a partially collapsed lung so they were trying to get her to use her lungs by blowing bubbles and even crying would help. Well nothing helped and it was getting annoying because we as parents didn't know what was going on and either did the doctors. Then Sophia ended up getting fevers, they said it was a side effect of the chemo she was receiving, which was a new one, and that also meant we would have to stay there longer. A couple days later the fevers went away and her breathing got better. They said everything was just a result of the trauma she went through during surgery. Finally Sophia was getting sent home on Monday February 18th. We couldn't be happier about this day but both hubby and I both didn't want to be too excited seeing how things turned out before.

Sophia is now acting like none of what she went through ever happened. She is back to her normal silly self. She still does not want to walk due to being in bed for 35 days, her muscles weakened but she is getting around pretty good by scooting and crawling. We’re hoping she’ll be back to walking and running in no time. Being in the hospital that long is really tiring. Tiring mentally, physically, and sometimes spiritually. It also sucked because when we first went into the hospital with Sophia our son was only three weeks old and when we came out he was eight weeks old. Talk about missing out on some special times with him, but he was in good care with my parents and we now get to enjoy him to the fullest. The nice thing about this time around in the hospital is I met several moms that are going through the same thing as us. One day this lady was passing around flyers to all the rooms and I happened to come across one, I almost missed it because she slid them through the door so it was on the floor, but the flyer said something about if we wanted to meet in the evenings to pray and meet other parents going through the same thing because we as parents can’t just depend on the doctors for comfort and healing. We have to pray to a higher power and that power being God. I was so so thankful that God put these ladies in my path. I got to hear stories of other kids journeys and I got to share my frustrations and people actually understood what I was saying because they themselves were going through the same thing. God is slowly putting people in our path (that are going through something similar) so that we aren't alone in this journey. I came across this quote that pretty much sums up how things have been for us since Sophia got diagnosed. I couldn't find it’s author but here it is:

“Childhood cancer is like a never ending roller-coaster ride.

One minute your up, the next second you're down.

It’s full of twists and turns that are unexpected and unforeseen,

and with every drop you find your heart in your throat

anticipating the unknown.

You try to close your eyes but it only gets worse

so you do the only thing you can, hold on for the ride.

Except with this ride, it never ends”

Both hubby and I want to say a BIG THANK YOU to all who have been supporting us through prayer, by bringing us things that we need, by sending special words and thoughts, by sending toys and goodies to Sophia and by supporting us financially. All of it has helped out tremendously. We still have a long time to go before this road to recovery is over but for now it seems as though the storm we were going through has calmed down a bit.

Until next time…