Thank you so much for taking the time to visit our family blog. This may be your first visit here, or you may be a friend from across the globe, or family that we have just seen. Who ever you may be, thanks for taking the time to read about our little family, and all we are learning on this adventure the Lord has called us to live! Here you will find, the random thoughts, funny stories, prayer requests, and the journey our family and Jack is on with his battle with Leukemia.

preparing for the end {pt. 1}

If you have asked me how we are doing or we have talked at all in the past couple months, you have heard me say many times how excited we are for the end of Jack's treatment for Leukemia. Each month brings us closer to the end. Here we now are, only 4 short months away. This has been so anticipated, and I simply cannot believe how close to the end we actually are. I am amazed by the hand of the Lord carrying us, protecting Jack, and strengthening us in it all. At the very beginning of this journey, when the Dr. told me it would be 3 1/2 years of treatment, I thought it would be the longest time in my life. And now, here we stand on the cusp of that ending. 

As we near the end of it all, I have been filled with many emotions and questions. If you think about it, the past almost three years have had a somewhat regular rhythm to them for us. Daily chemo, weekly then monthly Dr. visits, blood work ups to give us a baseline for where Jack was at, fever patrol ending with us in the ER, watching Jack for any signs of relapse or sickness, ect. With all of those things, we have come to have a new "normal". This constant flow of prescription medications in our home, antibiotics every weekend and always with fevers, constant hand washing, sickness monitoring; these have all become just part of what we do. So the idea of ending all of it, without any weaning, not a gradual tapering off, just cold turkey throwing it all away... well, its kinda weird. 

We fully think that this last day of treatment (April 13th to be exact) is a time for celebration. It is to be a time of rejoicing in the goodness of God, His sustaining power and mercy on our son's life and reveling in the many many provisions He has made for us. And we plan to do just that. Yet also, in reality, it can also hold a little bit of fear. The protocol schedules and frequent appointments have provided reassurance and structure for us. Ultimately we have had our hope grounded in God.  But the questions do come. 

I am thrilled that the days of pills and procedures are going to end, yet there is a real little bit of  worry for a future without powerful medicines to keep the disease away. Dont hear what I am not saying... I do not want Jack to continue on his treatment a day longer than needed. The concerns about him relapsing is the main issue and honestly, leaves me feeling a little vulnerable for the time when active treatment will end. I know that God is in control of this. So I do not have to fear. I can rest assured. That the one who spared Jack so much will not abandon us now. Yet the questions still come. 

You see, not only is there the uncertainty of Jack's future health and the potential for the Leukemia to come back (which is quite low), but there are is the reality of treatment-induced learning disabilities that we will likely face. Add to that the long term effects that the poison that has been pumped into his body will have on him as he grows up. We are going to do all we can to re-build his body as he comes off of the medications, both nutritionally and academically and physically. We have been blessed to be in a great school system with many benefits in academic support, and to have a great team of Dr's. at Children's. And I know that God is the king of all who sustains his body, who will continue to help him grow and strengthen him. Yet the reality is that chemo hurts both the good and the bad cells in the human body. So the questions come. 

Here is a little window into the world of a parent of a child with cancer. With diagnosis came the acute and real awareness that God, who is not cruel and unpredictable, will sustain you in the greatest of life's storms. He does not abandon his children, he is very near to the brokenhearted and he is a great provider. Yet there is also a real awareness that sometimes life can be cruel and unpredictable. Many times I have felt safe during treatment and feel that therapy is keeping the cancer away. This is true, the chemo is doing what is was created to do, but we also know that God is in control and ultimately he is determining the growth of the cells in our child's body. Yet it is easy to trust the medicine. To hope in the medicine.  When treatment ends, parents and children must find ways to live with uncertainty, to find a balance between hope and reasonable worry. Because you are no longer just a parent, you are also a nurse, there is an new built in alertness to germs, sickness and awareness of the potential health risks. This reasonable worry, isn't that the tricky part. Learning to separate fear, and distrust in the Lord, from wise and discerning concern and awareness.   

So we are anticipating figuring out what our new "normal" is going to be. It is an exciting and new thing we are about to venture into. We know that returning to the way things were pre-cancer is unrealistic. We are different people now, changed by the storms we have walked through. God has worked in us in so many ways, and we are not so innocent thinking that difficulty will never find us, but full of faith that when they do, God will be there and He will hold us up again. The constant interaction with medical personnel is going to change over the next couple years. We will still be going into the clinic monthly for blood work, monitoring Jack. The first year off treatment is generally when a relapse would occur, so he will be watched closely, by me and our Dr.'s. But we will mainly be developing a life that does not include cancer. While it is true that the blissful ignorance of the days prior to cancer are gone forever, a different life, a new, normal one is on the horizon. One enriched by the experiences we have had over he past three years and the lessons the Lord has taught us.  

So while it is true, that the questions still come, the worry sometimes lingers, my heart can fill with aches for the what-ifs... I do know that I have a safe harbour from the storms. I do know that God knows the answers to all my questions. I know that God has numbered all of my days, and Jack's days as well.  I know that I am weak, and human and that all I am experiencing is actually normal and ok. It is ok to wrestle with these things. And wrestling is something I do. God always wins, he wins my heart and my affections and my trust.  I do not have to fear the worry itself, because the Lord will shine the light of His glory into my darkest hours. I can trust in him.


Christy said...

Wow! Still remember you driving though that snowstorm going to the hospital and getting Jordan's text. So amazing that Jack is nearly done with all his treatments! I will be praying for all of you this year of transition.

David said...

I'm glad you wrote this - really helps me understand what you're currently thinking. I was so excited for you guys when I saw you pinning stuff for a "cancer completion party" on Pinterest today!! And of course it IS so exciting that there's only 4 months left, but I'm glad to know how to keep praying for you guys.

You blow me away with the way you've handled this from start to finish! Love you!

cmhgarner said...

God bless you and your family. Normal is constantly changing for us. Perhaps change is the only real normal... which is why solid grounding is so important. I've been on a similar road, not cancer, but life-altering anyway. It's not easy, but continue to take one day at a time, and know that the Lord is God. Ultimately, you have nothing to fear.