A New Phase Brings New Challenges

11 May
May 6, 2009
Keely officially started her second phase of treatment this past Tues called the “Consolidation” phase (first phase was “Induction”). We (for some ridiculous reason) had the impression that this next phase would be lighter & easier… WRONG! It’s actually a bit of a boost. We went into clinic on Tues & she started the new chemo that goes with this phase. She was given the drug “cytoxan” through IV & had to be monitored for 4 hrs after the infusion (mind you… the infusion takes about 45 minutes), to monitor her bladder. If the cytoxan sits in her bladder & she isn’t passing it through the urine, it will literally eat the bladder wall away. She did really well. We were there from 7:30am – 5:30pm. She was in good spirits & even played with some of the kids in the infusion room. We have tried a few tactics to make clinic as fun & quirky as it can be (not to mention the nurses are such a blessing & have such a gift with children!). We thought it would be cool if she named her IV pole. This was such a great idea!! She named him “Fred”. Parents & nurses thought it was the most adorable thing. Since the pole has the 5 little feet that hold the wheels, she has discovered that she can ride around on “Fred”. So, every trip to the bathroom was a ride. She really enjoyed this association & even told “Fred” good-bye when we left & that she would let him rest up for our visit next week.

It was a loooong day. We were all exhausted once we hit the road in rush hour traffic in Chapel Hill. Another new drug in this phase is called 6MP. It ONLY comes in the form of a pill. arg! So, at 8 o’clock at night after this exhausting day, we tried to teach our 4yr old how to swallow a pill. For 45 minutes Keely screamed & cried to the point that I thought she would hyperventilate! It was horrible. We wanted to teach her to swallow the whole pill as apposed to crushing it up since it IS chemo. We were given very special intstructions on crushing the pill if we opted to take that route… such as, making sure no particals of the pill were left in the spot we crushed it, because it is essentially “poison” & can be toxic to our other children & can even give the person administering the meds side effects if not performed properly. Finally, we decided to crush the dang pill & give it that way. We failed to pick up the pill crusher from Target when we picked up the meds & so we weren’t able to crush it as fine as it needed to be. We tried to dilute it in juice (bad idea!! We know now to use pudding, yogurt, ice cream, etc.) The pill just kept settling to the bottom & Keely refused to keep drinking over & over… another 45 minutes of complete hell. By the time it was over, we were all so emotionally drained & on the brink of tears. I had a moment where I thought, “Am I really this strong? Can I wake up everyday to this for the next 2 yrs?” Brian has been my rock all along… the strong one, but this time he was worse off after it was all over than I was. Funny how it works out that way… Brian seems to handle the stuff really well that I don’t & vice versa.

Usually, when we get to clinic they access her port (insert the needle & tube), & when we are all done, they de-access her & we go home with nothing. You can’t even really tell there is anything there inside her chest unless you put your finger on the site. This time, they left her accessed because we have to administer a dose of chemo daily that is only done IV. Seriously?! I was sooo intimidated for several reasons, #1- I’m pumping chemo into my daughters artery that runs directly into her heart BY MYSELF! I’m not a nurse people! & #2- leaving the needle in poses risk of infection if it gets wet or pulled out. Keely has a very rambunctious 19 month old brother & I have a newborn that needs to be fed, etc. I can’t watch out for her playful behavior 24/7.

Home Health Care sent a nurse out today who taught us how to administer this chemo & keep everything sterile and so forth. We’ll do this over the period of the next month. I will be soooo glad when this part is over. At least before, when we left clinic, she could be a normal kid with nothing attached to her & no needles inserted into her chest. I’m sure I’ll be more comfortable with this once I’ve given her the ARA-C (the chemo) a few times & have learned how to de-access her so that she will have a break from Fri-Tues when we return to clinic (she only needs the ARA-C for 4 days in a row at a time).

These 2 new drugs, the Cytoxan & the ARA-C are very potent & cause some of the worst of the side effects. She has thrown up numerous times over the past 2 days 😦 Funny how resiliant kids are though… she goes, throws up, then goes right back to playing as if nothing abnormal just occurred.

It was a very hard couple of days, but I knew that they would come along this journey. I knew we would sail through certain days as if there was nothing different in our lives, & other days would be a struggle just to make it to the end. (Remember, as this ordeal with the 6MP (the pill) was going on last night, Finley was screaming on & off. ahhhh! We were literally losing our minds. Dealing with Keely’s disease is only one of the responsibilites in our life). I know that if Brian & I can survive this season of our marriage, we are set for a lifetime of appreciative marriage & the relationship that we share. We come at every situation as a unit because that is what we became when we became husband & wife. We have been each other’s rock… we’ve made all decisions together with complete respect for one another’s opinion & knowledge on each individual subject. The stress has broken us down a couple of times, but only in the moment… “and this too shall pass” is something we say out loud to one another during these tough moments!

**Today I thought about something Pastor Steve taught us… when we are going through hard times & our pain is so severe, we tend to focus only on ourselves & our situation (that’s the flesh part of us). But even as Jesus was being crucified (which by the way, was the worst possible way to die… most people died before the end of crucifixion from shock), He was STILL thinking & focusing on US. When He said “it is done”, He was referring to our salvation, us being made right with God. So in this time, I just try to focus on Jesus!**

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