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…

The Long and Winding Road

Living in a world with cancer, from a parents perspective, is pretty brutal. It's like driving down a long, and I mean looooong, and winding road that's never ending and each little curve brings something new, good and bad, to Sophia's road to recovery. It's been 5 months since Sophia was diagnosed with Leukemia and if it weren't for the Grace of God I wouldn't know how we got this far. Growing up I always knew of someone who had cancer so it wasn't anything foreign to me but never did I ever imagine it would hit so close to home; my home. Living this way, this new life with Sophia, isn't anything how I ever imagined it would be (and by imagine I mean thinking of how it was going to be once we were told that's what she had) it not only takes away part of peoples life's but it also destroys them. I never was that type of girl to cry, in fact I hated to cry and be all emotional when it did happen. Maybe that's because I grew up with nothing but boys, aside from friends. Seeing my baby girl go through all this really tugs at my heart and makes me want to cry every time she goes through something horrible. No matter how hard I try to hold it in sometimes it slips out and then the river comes flowing out of me. It's really hard to see your little one go through so much pain and sometimes knowing the pain she is going through is a result of a decision we made. It's even harder to see your little one who is normally a happy, silly, energetic, and talkative little girl be so sad, mad, angry, not talking, and not feeling well little girl. Over the past two weeks I've came in contact with several women (who have gone through something very similar and I am so thankful they've been put in our path) and after talking with them I've been assured that all this that we are going through, in this world with cancer, is normal, all these feelings are normal and it's okay to cry and be angry at times. 

For those of you who don't know, Sophia was admitted into the hospital on January 18 due to a stomach virus on top of a bacteria that they found in her blood. She also recently had chemo and was on steroids so needless to say she was doing really bad. It was really scary at first because the doctors kept wanting to take her to ICU but basically she wasn't that critical to take her there but it was like at any moment. She finally was stable enough to not be sent there but she was still doing pretty bad. For about two weeks all she did was sleep all day, she had a rash, she had fevers, she had a cough, she was vomiting from so much phlegm, she barely had a voice, she stopped walking, and she couldn't even hold herself up . She most likely caught the stomach virus from some stranger in the outside world and since her blood counts were low it really attacked her and the bacteria they found in her blood was most likely from her picc line but it also has several other ways if enter the bloodstream. They did have to take her picc line out so she was getting poked daily to get labs done. My poor little girl was black, blue, and green all over from them poking her everywhere. You know it's really bad when the phlebotomist themselves are praying out loud before they take her blood because every vein is blown and there's nowhere left to poke her so they have to re-poke bruised spots. Torture! Pure torture not only for her but for us as well. Our little Sophia is such a fighter, she never hits or kicks them no matter how bad it hurts and doesn't want it done, she just cries and looks at us like Help Me! Ugh, that's the worst look ever that your kid can give you, the "Help me, why are you letting them do this to me" look. Horrible! Also since Sophia's immune system was super duper low she basically was and is in isolation from the outside world. Visitors were few and all staff needed to gown up and mask on so you can imagine as a kid your sick and probably don't even want to be in the hospital and everyone who is taking care of you, aside from your parents, has to cover up so you cant see anyone's face. Um, Scary! So, she was on daily medications and as of a week ago she was free from the bacteria in her blood but is still on medication. They were going to send us home and set us up with supplies to continue treatment at home (because its a 6 week treatment) but her fevers kept continuing so they kept her admitted longer. They kept running more test and didn't know where it was coming from. I had mentioned to them several times about several bumps on her head and lower back so they had to do a biopsy of one of those bumps and a CT scan of her whole body. They said that sometimes in chemo patients the chemo does weird things to the body and it can cause things to grow where it shouldn't and cause more bacteria there. Can things get any worse? I thought, and I'm sure they could but for now thank God they haven't. The whole biopsy thing was a horrible experience for Sophia and I but it was a must and we should have results within a week. The results from the CT scan came back clear except it was showing something where her picc line used to lay so Sophia needed to have an ultrasound done in that area to get a clearer picture. Maybe all this was causing her fevers they thought so this was a must before getting her port put in. It's a bit confusing and scary when the doctors themselves don't know why things are happening but we kept those prayers going and kept trusting that the Lord would reveal what the problem was. They kept putting of the port placement due to her having a cough and having fevers so Thursday, the 31st, was going to be the day but Thursday came and she got called to the OR cause they were ready for her to put the port and last minute it got canceled. Can you say Amen! We were literally in the room and they were ready to put her out and then Canceled. I was very hesitant of her getting the port in the first place but went along with it because of extra benefits to the picc. It turns out Sophia has a blood clot where the picc line used to lay and also in the area where they would put the port. If they had put the port in it totally could have caused more of an issue and would have had to have it taken out, and each time it's put in or taken out it's surgery to do so. I was so happy. Then they were going to put another picc line in since she was ready and everything but they let me decide to wait or not because next week she is due for more chemo in the spine which means they have to put her out, so instead of them putting her out twice within a week I said if we could just wait. So no picc til Monday and possibly a port in a month or so. Geez, this has been such a roller coaster and we're not even half way through. So due to this blood clot that she has she was going to have to get a shot a day for three months of a blood thinner in her thigh. They did start it Thursday night but by Friday evening they discontinued it, Praise God! The hematologist reviewed it and said that its an old clot and the body will just break it up on its own. I am so thankful for that because I didn't want to have to stab my baby in the leg daily for three months. On top of all this she is also seeing a physical therapist because she hasn't wanted to walk. It's been crazy to see Sophia go from a baby to learning how to walk at 11 months and then stop walking at 19 months and then learning how to walk again at 21 months and then stop walking again at 24 months and now having to relearn to walk yet again. So far she has been able to hold herself up again and just today she said she wanted to walk, so we did just that but we had to hold her but we were glad she wanted to try. Her little miss independent self is coming back. So here we are, possibly the last weekend at the hospital and they've left her alone for a bit and they're just observing her. She is scheduled for a LP w/chemo on Monday and getting another picc line. I should say so far that's the plan because things change pretty fast around here.

Going through all of this with Sophia is a great reminder that not our will but Gods will is being done. It's like my Hubby reminded me that God has always been good to us and that we need to keep trusting that Sophia's road to recovery has been put in place a long time ago and we just have to let Him guide us through this long and winding road.