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.