… & so the decision is made…

As I sit here… at 4 o’clock in the afternoon, laying with my only daughter trying to rest from one of the most exhausting days of my life, I can’t help but think, “our life is so far from the average family’s right now.” I don’t mean that in the sense of “whoa is us”… it’s more of an observation/reflection of everything we’ve endured & how dramatically life changed for us in an instant. People always say that… “your life can change in an instant”… boy did ours! We are so far away from “normal” right now & STILL we praise Him… even in the middle of the storm. The worship team just sang a song about praising God in every season of our lives. As I stood there listening, hands raised toward Him, I thought, “If I can whole-heartedly, praise Him, worship Him, & love Him for who & all that He is during the storm of a lifetime… how easy it is going to be to do the same once we are standing on the other side of this… where He has already set joy before us!”

That was a rant, but I needed to just rant for a minute. Today was by far, one of the most mentally & emotionally exhausting days of my life. It’s right up there with the day Keely was diagnosed. I have kept the world update for the most part on where we are in this series of phases of chemotherapy. You all know that she had an allergic reaction to one of the drugs (the PEG-asparagus) & had to go on the ONLY alternative to this drug (remember: this drug does a specific job that the other chemotherapy drugs do not do), Erwinia. The last few weeks have been extremely difficult. Keely was having out of the ordinary reactions to this drug as well. She was going in for a shot of this every other day (remember: it takes 6 doses of this drug to equal 1 dose of the PEG). As the doses went from 1-6, & the drug was building in her system, she was psychologically suffering. She felt like she was going to come out of her own skin… she became more & more aggressive & out of control (screaming, physically abusing Cale, etc.)… she would be up from 8 am- 1 am (which for anyone that knows my children, is absolutely not normal!) & that was even after an entire day of exerting more energy than the average person can imagine. By the end of the first round (6 doses), she had lost over 3 pounds, she was so exhausted that her eyes were sunken in & eerily dark, &  it took over 5 days of not getting the shot, for it to finally work it’s way out of her system & for us to see our child again. By the end, her & I were both just plain exhausted!

Today, we were supposed to start the beginning of the second round of the Erwinia. Brian took her in to clinic yesterday for her regularly scheduled chemo (the vincristine & the methotrexate) & he talked to her Dr. about the past couple of weeks. They found that everything we were describing was very extreme & uncommon side effects to the drug (the Erwinia). They thought that she may have a blood clot in her brain that was causing her to become so extreme (blood clots in the brain are a side effect of the Erwinia), so they scheduled us for a CT scan this morning @ 7:30 am with a “parental decision pending” on continuing the Erwinia. So today, after the CT scan came back clear (praise God!), we had to make one of the hardest decisions of our life… whether to continue with this particular chemo or opt out.

You can’t imagine what it’s like to make a decision like this. No one knows if her not getting or even continuing to get this drug will effect her chances of relapse. Today I really realized that even with how far they have come with treatment for childhood cancer, there is still so much they don’t know. So the future of our child, is gently placed in our hands, for us to weigh. The doctor says, “Ultimately, we look long term, we want her around!, but we also have to look at the day to day… is this drug so toxic to her body that we could potentially be doing more harm than good. & when looking at medicine & using it in treatment, we all have to agree that we are using it for good at the end of the day. If we don’t feel that way, we have a hard decision to make… ”

I cried all day. Do I do what I feel is best for her stability right now & risk the burden of “not utilizing every single drug that could have helped”, or do we continue (remember: we have 3 more rounds of this!) & risk her health right now, knowing that there still are no guarantees even after having this particular drug? THE hardest decision I’ve ever been faced with. Since she has had the exact opposite reaction to all of the anti-anxiety medications they have tried, in attempt to be able to continue with the Erwinia while providing some relief… they tried one more anti-pshycotic drug today that they thought would help since it wasn’t in the same “family” as the other drugs tried. The plan was, to give it to her 1 hour before the shot, while in clinic to see if it was something we could use throughout the remaining 3 cycles. In less than 30 minutes, she was jumping off of the walls! It did the same thing that all of the other meds did… wired her! So with the help of the entire team, we all decided to take her off of the Erwinia.

The decision has been made & I HAVE to be at peace with it. Maybe this was God’s way of making sure that we really are relying on Him & not ALL of the chemotherapy to heal our daughter. I am writing this to let everyone know what happened today… & then I am releasing it…. releasing it to our Jehovah Rafah! I’m counting on God to be my stronghold, to be Keely’s final Healer, to give me wisdom & peace, to carry out His promise of a FULL life for Keely!

For the first half of the day, Pastor Micah was with us & for the last half, Pastor Bruce was there. Pastor Micah said some extremely profound things to me this morning that helped me to clear my head & guide me on how to deal with the enevitable  doubt that crosses our minds during any time like this, & Pastor Bruce… well I just don’t know where we would be without him. He’s been here since day ONE! He’s been here for us so much that Keely even asks, “where’s Pastor Bruce?” when she knows something serious is going down (& you wouldn’t believe how intuitive kids are about these things!). I am so thankful for the church that God placed our family in. I can’t tell the world how many times our family & friends have said “wow. you guys are a part of one of the most amazing churches I’ve ever been witness to.” They couldn’t be more accurate! We love them, we pray for them just as they pray for us, & we thank God for them every opportunity we have. Nothing can ever strip away all of the times they’ve been there when Brian & I were on our own as young parents going through the toughest time of our lives! Nothing can ever strip away the things they’ve taught us & the fact that we wouldn’t have this faith & security in God if it weren’t for their guidance! At the end of the day, Nothing can ever strip away the bond our family has with the people in LWFC… our brothers & sisters in Christ who will FOREVER be in our hearts. & the same is true for the entire team at UNC! Both of our Pastor’s commented today on the level of dedication & commitment to our family all of the doctors, nurses, nurse practioners, etc. are! They have been so good to us. We couldn’t have asked for a better hospital to treat our child!

At the risk of sounding a little weak in the moment… as I still stand on God’s Word & promises for  my daughter, I am telling the world, I CANNOT LIVE WITHOUT MY DAUGHTER! She is my wings to watch soar someday. I’m holding firm to my vision of her as a young woman telling the world about our Healer, our Deliverer, our oh so good God! I will focus & meditate on that vision until I see it happening right before my eyes. I am focusing on this vision & letting the decision we made today go. God is by our side & He won’t fail us, though we may fail Him. His Word will not return to Him void, but WILL accomplish what  He says it will!

I’m No Superwoman

Be prepared that this blog is probably going to be all over the place, because… well… that’s where my mind is right now. Tears are trickling down my face as I get this all out. ( & so help me, if you’re too lazy to read this b/c it’s a little long… you’re missing out on something that can make you appreciate your battles!)

The last few weeks have been so tough for me. Of course, I have good days & bad days, just like anyone else. I’m a strong person… always have been (& no, I’m not trying to pat myself on the back here, I’m just making a point). When all of this came crashing down on us, after the first couple of initial days of shock, I KNEW that I could press on… I always have. But there have been a couple of days, just in certain situations (feeding an infant, Cale’s running with a pen, & Keely’s puking… all at the same time) that I feel like I literally can’t do this day after day after day. I mourn my old life… I sometimes think about Keely playing at the park or running around Target, & literally feel like that life never existed.

In the last few weeks Keely has started to display some MAJOR behavioral problems! I feel so out of control. I don’t know if it’s the chemo that makes her so angry & out of control, or if it is her emotions that she doesn’t know any other way of expressing, or if it’s her lack of understanding about what is happening to her that she can’t seem to figure out how to ask or put into words. She has always been such a good kid… I mean, there have been so many times that Cale has pushed her or bullied her & I have had to literally talk her into just pushing him back. & the other day, as we were all standing in the kitchen making dinner, she slapped Cale across the face… right in front of Brian & I!! My jaw dropped! I was so stunned that I didn’t know what to do, how to punish her, or where to even go from that. She screams ugly things at us like “meanie!”, “shut up”, “you don’t love me”, “do it NOW!”… things that I have NEVER heard come out of my daughters mouth… ever!! We’ve hardly ever even had to put her in time out, even through the toddler years. I’m so sick of the same explanations from the doctors, “oh… it’s typical for kids to regress, like with potty training and so forth”. Regress? Are you serious? How do you regress back to something you never did to begin with! Or they blame it on her age & her “testing us”… again… she’s not that type of child & if she had that nature, she would have started “testing” us long before now. I know… I have a toddler boy that test me daily!

I am in the middle of reading one of the most well written, educational books ever written. It’s called, “Childhood Leukemia: A Guide For Parents & Caregivers”. The woman who wrote this book, Nancy Keene, is a parent of a child who survived A.L.L. Nancy, not being satisfied with the research for parents dealing with this struggle, started doing her own research & is now head of the COG (which is a BIG deal!). Needless to say, she knows as much, I take that back, probably more than the doctors. She understands that although doctors know “common” side effects of these drugs, they’ve never had a kid with leukemia. They’ve never brought them home & spent 2 & 1/2 yrs. with a child battling something that has such an impacting on their lives… a disease that has completely taken away any sense of normalcy they’ve ever known. She even includes exerpts of other parent’s battles. The book has been a great blessing. I am the type of person that always wants to know what I’m up against, the “unknown territory” causes anxiety for me. I want as much information as possible. I want to learn as much as my little brain can take in & comprehend & this book has provided me with that!

 As I was literally crying out to God for wisdom on how to handle Keely (which would help so much with the rest of the house coming back into order), I sat down to read last night & my next chapter was on this exact issue. EVERY single parent expressed having these exact problems with their children even though the doctors didn’t think it was linked to the chemo. There were pages & pages of great advice from parents on how to set limits that a 4 yr old can understand. Isn’t God so amazing?! Just when we think we’re at our wits end with something, He sends us the relief & the wisdom we need to overcome!

I am just feeling an enormous amount of pressure that goes beyond just Keely’s disease (although it all stems from it). I feel like Cale is being neglected because he is the “healthy” one. I feel like he is being punished by not being able to go to the playground and dig in the dirt like a little boy should! He needs some time with us to concentrate on him too. Time! I hate that word now… I hate it! My very last baby, who I planned to just soak up & enjoy my last time caring for a newborn has been totally disrupted! I hardly even get to sit down to feed him… I’m usually holding him with one arm, propping his bottle up with my chin & doing something else that requires my attention RIGHT THEN! Keely obviously needs me, & I am so stressed about making sure that I am loving her as much as I’m having to discipline her at this point. Family, friends, & even complete strangers that have went out of their way to bless us in any way they can haven’t even received a “thank you” card from me. Along with dividing up my attention between 3 kids, there’s sooo much housework it takes to keep up with a larger family. And most importantly… GOD!… the One who provides me with this strength, the One who NEVER leaves my side even when I can’t seem to spare a moment with him, the One who’s promises I live by & for, the One who understands my “season”, but longs for my time. Oh… & then there’s my husband, you know, the man I married, the man I made these children & this life with… what about him? He told me last night that he needs me, that he wants more time with me & I wanted to scream! I know it’s only because he loves me & is only doing the right thing, which is to nurture our relationship so that the other relationships in the house are healthy, but at that very moment, I thought I was going to loose it!!

Time.

I’m exhausted, I’m overworked, I’m emotionally drained, I always feel guilty for someones neglect, I sacrifice sleep for so many other things that need to be done, I try so hard to never complain or burden people, I’m never able to even shower before the kids are in bed @ 8:30, I still feel so pressured to have a clean house, bathed children, & dinner on the table when my husband gets home (because I believe I am his wife & want to lessen his burdens).

In the end… I keep pressing on (& most days it really & truly is with a smile on my face, being thankful that in the midst of the trial, we’re all still here… & this is indeed the day the Lord has made!). The Holy Spirit comforts me when I need it most & I know, God hasn’t once left my side. He understands my hurts, & He hurts for me because I’m His child & He loves me more than I’ll ever know how to love Him.

“Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.” – James 1:12