Clinic day 

It is 9:42pm and Beck and I got home an hour ago from a day in the clinic in Atlanta. We left at 11:00 wth Becks dad driving and made it for the 1:00 appt. Beck refused to get the EMLA cream on his port site (says it hurts and darned if his sister also hated it) so we tried the cold spray with great success. He had blood taken to check cbs, chemistries and also to see if he has active CMV or EBV which can affect liver levels and we will have results back tomorrow thought the concern of those is low but being done to be thorough. Beck was weighed and has gone up two and a half pounds since last month as well as an inch. This is probably a large portion of why his legs were hurting last week as he is now running much more normally and has no pain complaints. Dr B checked Beck out and is impressed with his silly and healthy self. Becks liver numbers have dropped down within the normal range for a child on treatment, praise the Lord. The team has decided to hold his bactrim which is an anti pneumonia antibiotic that is heavy duty and given every weekend while in treatment…they have switched this oral liquid for a once monthly iv infusion. There is a very slight decrease in its effectiveness against pneumonia but they feel it is too hard on his liver functions and that is more of an immediate concern. 

Beck finished his chemo and pentamidine around 5:00 and we elected to grab dinner versus sitting in traffic for 3 hours. I fully anticipated him zonking out on the way home but he happily colored and chatted with us. After a quick stop to pick up his decadron from the pharmacy we made it home. I have him a quick bath because it was a day full of people and germs and I tucked him into my bed where he fell asleep before I finished praying. 

These sorts of days are long and exhausting. The anticipation, the waiting, the entertaining, the answers, the traffic…it all roll into one long day. But today I am thankful for a day with results that my heart is encouraged by. That I see the faithfulness of the Lord from last week and those fears to today with its weariness and yet, even happiness. I’m thankful that Becks dad drove us, that the hospital has a Starbucks’s, that Beck fully appreciated cream cheese and crab rolls and my curry at The Tin Drum for dinner and that my Linley was loved on well by my mom. And that all concerns from last week are gone and better. I am aware that the Lord often has gripped me in fear to strengthen my trust of Him; how weak I feel when I stand in front of uncertain circumstances and my own shortcomings but how kind and steadfast is He as he builds up my knowledge of His character each time. He will not allow me to remain neutral in my concept of needing a Savior. 

Becks next monthly appt will be the week of Labor Day and it will be a sedation/spinal tap. This is when chemo is given but also they look at his bone marrow to assure them and us that Becks body is continuing to remain leukemia free. Until then he is back on nightly oral 6mp chemo, Wednesday methotrexate pills and beginning tonight is ten doses of decadron steroids. Choosing to be thankful that these medications are available and effective. And always thankful for each of you who love us so well. 

Results 

I took Beck this morning to get his local labs done then dropped him off at school and proceeded to weep for the next hour. Then I pushed myself to do actions that encourage my heart and this meant sitting with some coffee and my bible and a quiet (ish) heart; I wrote the things that the Lord has been to me. Faithful, kind, patient…and how I have seen it. Graces in the past that I trust will be evident if needed again.  My heart was encouraged but the fact is that being faithful often means still crying in your coffee while reading words of truth. 

At noon there still had not been a call with results so I began calling the clinic. I finally heard from the nurse at 2:30 and Becks CBC/bloodwork is normal and clear of leukemia. His liver functions have come down some but not enough so the team is asking me to continue to hold his chemos…he will have blood work done at his monthly clinic appt on Wednesday and they will test for various virus’s that could be contributing if his liver functions are not improved even more. 

I asked how long they were comfortable holding chemo and they feel like two weeks is not concerning at all…especially since his bloodwork looks perfect after a week off chemo. However, it is still best for his liver to work well and his leukemia to be treated at the same time. 

Beck has said that his legs hurt off and on for the past few days…because there are no concerns  with his counts then they think this is a common effects of a growth spurt which I can see since his appetite has picked up in the past few weeks. He certainly has not slowed down his level of energy. While concerning I have no reasonable fear to focus on so I pray that this is just a random and typical injury that will heal quickly.

Friends. I am weary. This is tiresome to attempt to thrive in the midst of suffering and fear.  And I’m saddened by how quickly my mood and steady self turns frantic when circumstances become uncertain again…I’m less faithful that I hope to be. And yet, as I was praying today I became so overwhelmingly thankful that no outcome is based on my amount of praying or being good…the Lord has set these days ahead of me and this creates a peace in me that I cannot have if I feel I am controlling any aspect of living. 

Today I rejoice in the knowledge that Beck remains leukemia free. And I rejoice because the Lord is tender to remind me where my hope should lie…that I am not faithful on my own accord. But God. Oh God, He is so faithful.

First day of school 2017

We get local labs tomorrow. Beck is wonderful…the few concerning side effects from last week are gone and I’m hopeful that labs tomorrow will be improved. 

But meanwhile Beck has begun his first day of pre-k at the school his sister has been at since her 1st grade. It’s an amazing school and support system and I am completely at peace knowing they are there and loved well. And until my classes begin in two weeks I’m enjoying a quiet house like the introvert I am. 

Will update when we have more details tomorrow. But look at these faces and try not to fall in love…

August 4/ liver concerns

It’s a little tricky to explain the constant worry and heightened awareness that goes along with raising a child with leukemia. Beck has done so well since diagnosis; the Lord has been gracious that Beck differs greatly from the difficulties his sister saw. And I often forget the immense battle within his small body…the war being waged even as he plays, sleeps and seems so normal. 

The past 24 hours Beck has presented with a few symptoms that alone would not be concerning but combined had us take him to get local labs and blood work done. His blood work has come back with no irregularities or concerns but his liver chemistries are elevated. The nurse who returned my call regarding Becks blood work is aware of our unique situation and my knowledge gained in the worst of circumstances. She was so kind and I am again thankful to have a team who feel Becks cure is personal and attainable.  I asked her outright whether this indicated a relapse and she asked the same question of Dr Lew who answered no. They feel like this is a result of figuring out Becks best maintenance doses of chemo to protect his organs and rid his body of leukemia. He will have a week off of pills and chemo and we will do blood work again the end of next week. We are welcome to go to Atlanta to the clinic but the team is not asking that of us due to their lack of leukemia concerns/relapse at this time. At this point we will just take him locally and pray that his blood work continues to look stable but that his chemistries have improved. 

My Beck looks like a normal four year old these days. We just spent a few days at a GA state park with friends and had a beautiful time. He is registered to begin pre-k next week. His hair is back and his energy is full. But inside there is a battle…and I am the one who is watching Becks every move/symptom/change. I cannot say how wearying this is both physically and mentally. 

Since yesterday life is the same and yet there are concerns that require nothing except keeping both my sanity and my faith. Please be praying for me as I attempt to work my days and plans in some sense of normalcy with such large fears over my head.
I firmly believe whatever a week from today will look like is the best plan for my life. That the Lord works both joy and suffering to claim us as his and to increase our knowledge of his unchanging character. He is for me. He is for my children and his goodness for them reaches so far beyond diagnosisis and the things I consider unknowns. 

How good it is to be kept by a creator who chose me and pulls me close today. Please pray with me that I can keep this in the forefront of my mind…let it block out anxiety and fear. Let me trust that I need not borrow anxiety from another day…I’ve only the grace to walk today. 

July 7, 2009

Forgive me if your pregnancies were less than easy but my world is best when I carry a child. For forty weeks I adore most everything…each of my three children coming at times when I had not anticipated them adds a certain level of appreciation. But even when nauseated, I loved the knowledge of growing a life and the way my stomach swelled and rolled when they would wake as I attempted to sleep gave me the utmost contentment. Even the food combinations I would crave or the vivid dreams of the most odd things I would dream. All were part and parcel of my adoration of pregnancies and mothering. 

This time eight years ago I was settling into sleep knowing that the morning would bring a new daughter to my arms. I woke in the early hours to shower and felt the contractions beginning…slowly and manageable. The drive to the hospital was bumpier than I remembered and the delivery was swift…after only a few hours my Piper Jean was born and she was perfect. 

Tonight I’m writing words and I’m crying. Birthdays are tricky to celebrate when you cannot put your arms around the one you adore. And I am not certain just why the birthdays have been more difficult with each passing year my Piper is gone.  But they are. The chasm between the daughter I last saw and the daughter she could be today is large; it feels unfamiliar because I love her in an abstract but intimate  way and with guesses of who and what she would be.  And there are more years to celebrate in the future because on July 7, 2009 I delivered a daughter and I dreamed of raising her. And while I won’t be doing that I will be loving her best by missing her dearly and deeply. 

Piper was born for a purpose and I do not know what that was. Her blue eyes and her fair hair: her silly and sassy self: her love of music and car rides and necklaces and me were crafted together not willy nilly but for a reason. And I do know the combination of birthing her and holding her dying body in my arms has created in me a need for eternity and my Jesus that I cannot fathom having not experienced. When Piper was born, she set into motion such events and fears and sorrow that I would despair if not for the nearness of a loving God who then and now, continue to uphold me and give me hope. Birthing and loving that sweet girl was such a joy and honor.

One day closer, sweet Jesus.

Eight years since that first day I loved Piper and only an eternity left to continue. Happy birthday, my love.

Rooted 

Monday, mid morning, it dawned on me that Becks 4th birthday was quickly approaching. His actually birthday was going to be a day he wakes at his fathers house and while I will see him that afternoon, our plans don’t include the excitement of a birthday. So I quickly called a few friends and made plans to swim and celebrate my Beck Wednesday morning…all he requested was a piñata and Spider-Man cupcakes which I was able to pull through for him. 

So Beck was celebrated and that is not a hard thing to do.

Prior to Becks party he was asked to get lab/blood work done locally to check that his counts are as they need to be for chemo on Friday. This is routine and given Becks cancer there is typically little nervousness on my end as I await results. But I feel the weight of raising a child who may or may not survive in waves…some days I forget that within him was something that can and has taken lives. With the exception of his nearly bald head and his lack of growth since beginning treatment, there are few external signs that he is receiving chemotherapy. This mostly is a blessing. Until it’s a sucker punch. 

After Beck completed his bloodwork we ran to Publix for balloons and then to the pool to decorate and the excitement he was feeling was contagious and all was well. Then friends began arriving and the party began and it was well. I left my phone inside and was too busy to worry about lab results…but I couldn’t shake the reminder that Becks labwork was once off and the potential of this happening again made my entire body hurt. It’s not that there are any new concerns or reasons to worrry today as opposed to last time but the waves, they come as they please. 

I got the call from the clinic on the way home….Beck asleep behind me surrounded by his balloons and gifts. The nurse who has Becks results has loved our family well in the 7 years we have been involved in the clinic. She is calm. But the tone of her voice as she began to talk to me had me park the car and listen in fear.

All is well. Becks counts look great for chemo and lack anything of concern. All is well. 

I thanked her and put the car into drive to continue home but didn’t make it far before huge, raw tears and sobs came out of me. The fingers on my left hand went numb as I have found they do with high emotions and my shoulders heaved while i wept with both terror and relief. Becks diagnosis and my personality have left little space for self reflection. But when the wave of remembering come at me I can do little to stand. Yesterday felt both joyful in celebrating Beck and fearful in preparing my heart for something that may or may not happen. The waves moved me all over the place and I felt at their mercy; high and low. Happy and sad. Expectant and overwhelmed. 

Most days I spend time in Gods word with a combination of the Bible and my favorite devotional, New Morning Mercies. As I went to bed last night, I was thinking of a page from the week before that began with “today the true love of your heart will be revealed by what you beleive and what your celebrate” and I was convicted. Not convicted of weeping but of not rounding back to noting the Lords faithfulness to me; even in darker days. Of praying only for Becks cure and not pleading for the Lord to be near me. Of my happiness in seeing Becks friends celebrate him and not trusting that this day is made exactly as the Lord knows will bring me closer to Him. Of experiencing both super highs and super lows of emotions in the same day and not recognizing my need for the steadfastness that God is marked by.  

My heart is clearly pointed by my own whims and desires and today was a beautiful example of this. And even more beautiful is that the Lord is tender in his reminding me and faithful when he forgives. Yes, let me smile when I see my children and yes, let me weep when the need is there but let me also rooted in Christ as Paul exhorts us in Ephesians 3. 

Interim Maintenance II

Beck has completed the Delayed Intensification round. His counts did as they were supposed to, he received each dose in the protocol and his health stayed consistent. No fevers, no infections and no hospital stays. Thank you sweet Jesus for small mercies for my doubting heart. 

On Monday he began Internim Maintenance II which very closely mirrors a round from a few months back and one he handled very well. Chemo is scheduled on day 1, 11, 21, 31, 41, 51 in the clinic through his port. Protocol calls for sedation/interthecal/spinal tap methotrexate given as well on days 1 and 31 but he has had a pesky cough (no wheezing or fevers) that caused concern with sedating him so they modified it to be given on day 11 instead. The clinic chemo given will be vincristine and an increasing dose of methotrexate. Vincristine causes constipation and nerve sensitivity and methotrexate causes mouth sores; Beck tolerated the increasing dose of methotrexate very well last time he had this similar round of chemo and was able to receive the suggested highest dose for his weight/age…this round will begin with a methotrexate dose that is 2/3 of the highest dose from the last round and will continue to increase each ten day infusion; counts and blood work depending. Vincristine will stay the same dose each visit. 

When Beck finishes this round he will be ready to bring maintenance. I find it absolutely baffling how the past six months have seemed so incredibly tedious as well as so exhaustingly chaotic. I am equally as overwhelmed thinking of another two or three years of maintenance chemo but am eager to muddle through anything that points my son towards a long life. 

I would go to into more details on maintenance and what all it entails but my body is tired from an extra, not leukemia related, drive to Atlanta this evening. Beck is participating in a wonderful and compelling experience with CURE Childhood Cancer in May that I will tell more about when both my eyes are able to stay open. 

Tonight and this round please continue to pray for protection from infections/illness and specifically this cough he has. For my stamina to lead this little family of mine with humility and patience when my selfish heart feels so little of that naturally. And for both Linley and Beck to feel the enormity of the Lords love for them while their mom bumbles her way through seasons of adversity and fear…what a joy it is to mother them both.