Update on the craziness that is our life.

24 Jun

Things have been a little crazy since last Tues! There is good news & a little bad news to go along. I’ll give you the good news first…

Last Friday at 8:30 pm, Keely officially finished her toughest phase of treatment… the ARA-C/ Cytoxan chemo cocktail. They are the most potent of all the chemo drugs she will be receiving & she got the last dose last Friday night. Woo-hoo! Everything she gets from this point on isn’t nearly as potent & shouldn’t knock her counts down so much. Her body has taken in the worst & the most harsh… & she has done better than I expected. They even expected a blood transfusion last week at clinic & again today, but she didn’t need it either time. Although, she does have to go back on Friday for one… still… they didn’t expect her levels to stay this high through this round. She’s been her normal self… no laziness, very minor sickness… she has remained in good spirits, playing & not even reacting to the fact that her little body is doing sooo much work!

Last Wed, after her first round of ARA-C for the second time in this phase, she had a bad reaction. It was so sad to see her in the state she was. She couldn’t control herself… it was literally like taking on someone who had smoked too much crack & couldn’t get it out of their system. It got so bad by about 2 in the morning, that Brian was having to physically restrain her in her bed. She was crazy & she couldn’t control it. She was screaming & throwing her body all over the place. So sad. I can’t imagine that feeling as a 4 yr old… not understanding why you are feeling this way… so out of control of your own body. But we made it through the night & she started to slowly regain control over herself throughout the day on Thursday. Again… thankfully we finished the ARA-C on Friday & she will not have to have that anymore over the next 2 yrs.

Today (a week later), she had clinic again as she does every Tues. We were relieved that she was only getting a shot (PEG-asparegus) which is an intramuscular shot given in her thigh that slowly releases over the next 7 days into her body. She has had this shot twice before with no problems. The shot has a risk of severe allergic reaction & is closely monitored. The reaction can happen with any of the individual times given, even if it didn’t happen the 2 or even 7 times before. I, however, wasn’t worried since she had it the other 2 times. They gave her the shots (it’s 2 shots given at the same time in each thigh) & monitored her there in clinic for an hour & she seemed fine, so off we went, back home. As soon as she was home, she suddenly started complaining of itching on her hands & feet, from there, her eyes swelled up & hives came up all over her body. We rushed her to closest E.R., WakeMed, which was again, not a good experience. These doctors are just not trained to deal with leukemia patients. They aren’t even allowed to breathe without instructions from UNC on how to handle her situation. So frustrating! By the time Brian got her to the E.R., her face was twice it’s size & she was covered in hives. They treated her with a few different medications & sent them home after monitoring her for aniphilactic(spelling?) shock for almost 2 hours. She is still right now, VERY swollen & there are still some remaining hives, but she seems to be doing well.

(Here she is at WakeMed’s E.R…)

007

This whole ordeal today brings me to this conclusion…

We have recently made the decision to try to move closer to UNC. It was Brian’s suggestion & his works in trying to get out of our lease here. I, myself, wasn’t completely convinced that moving right now was the best thing for us. I have been in prayer over this for the past couple of weeks, asking God for direction in this matter. I of course, will follow the leadership of my husband who is the man of our household & holds much more responsibilities in the eyes of our Father for the major decisions of our family. I have prayed DILIGENTLY for God to give us the direction as to what to do. God had (up to this point) provided a way out of where we are currently living, so I was confident that if He provided us a way out, He would also provided us a place to go. I just wanted to make sure we were in stride with God on this decision. Well, today, God spoke… loudly!

Our last visit to WakeMed’s E.R. was not a good experience at all. We took Keely in for a fever & once we were there & they realized they had to access her port-a-cath, it was a mess! 2 girls came into our room with all of the stuff to access the port… & INSTRUCTIONS! I had to intervene. Neither of these nurses had ever accessed a port outside of nursing school. No, no, no, no… not on my 4 yr old daughter are you going to take the “opportunity” to practice! For those that don’t understand the job of the port-a-cath… it’s too much for me to go into detail now, but this thing is a blessing & a curse. It keeps her from being poked over & over & have IV’s in her arm, but if is not accessed correctly or anything goes wrong with it, it poses a serious risk of infection… which with Keely’s disease, can be fatal. Brian & I had decided after that that we would just make the drive to UNC if we ever encountered this situation again. But today, it was an emergency type situation & there was NO option to drive the 45 min. We HAD to go to the closest E.R…. & once again… they were intimidated by her & how to handle her, which makes me very uncomfortable. I mean, any parent has to understand… this is my child we’re dealing with!… there is no room for error.

This emergency situation where we had no choice as to where to go was such confirmation from God that we are indeed to move! Keely is home & doing well because of God’s protection. This was just a way to answer my prayer. Driving the 45 minutes wasn’t an option. Our decision to just make the drive to UNC & avoid WakeMed for the rest of her treament duration wasn’t an option. It was God’s way of speaking to us… confirming that we are making the right decision to move. Today was also a blessing & a curse… we had to go through a scary situation, but God spoke & Keely is okay. I have realized that God speaks through many avenues & even though we had to go through this temporary scare today, God spoke to us & that is most important…. it’s what I’ve been diligently praying for & asking for… for God to give us confirmation on our decision. I NEVER want to make any decision in my life without first consulting the One I’m following.

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