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. 

April 3

April 3rd marked five years without my Piper. I intended to write as words are cathartic but instead each word and sentence bumped along both repetitive and not quite adequate. At the very core of missing Piper is the knowledge that missing and aching for my daughter is the only way left to love her. And that can sometimes wash over me with fear of flying from such emotions that steal. And still somehow this revives my role as Pipers Mom and I weep because it’s with these raw sobs that rock my body that I am the closest to feeling my daughter. 

I won’t dwell too much on what grieving parents worldwide and through the ages have said; nature was reversed when my daughter died in my arms. While true, what mercy is there in dwelling on the unfairness of her death? I had two years and nine months with her…only ten short weeks of those were spent assuming I would mother her through her first day of school, through the chaos of middle school, through friendships, through moving out and marrying. Through being a mother and then loving her babies and this is not what I will have. And I grieve for both the missing and the wishing but I am confident that the same God who created her in my womb has kept her close to his side and that being reunited will happen. 

Shortly after Piper died I met with a local friend at a little cafe here in town. She had lost her own son less than five years prior to our lunch and I remember the tears in her own eyes as she listened to my sad rambles…and I remember being surprised that she still seemed so moved after so many years. This year I finally understand the sacrifice she gave in sitting across the table with me and my naive assumption that grief was brief. Because five years are nothing when faced with a life without a child. And while this hope I have as a believer is more than enough for my weak trail of thoughts, it’s a battle to bring myself back to truth. 

And so these silly words I have spewed out here tonight are the grace I need to continue to miss Piper. And to let time march on and possibly not heal me this side of eternity. Five years, ten years, thirty years and more…I love Piper when I weep for missing her and I’m confident that I am not the only mother who stands by that realization. Who maybe finds the sweetest comfort in accepting it but knowing it is overshadowed only by the promises of a Lord who sustains my weary, disappointed self. 
“Dear refuge of my weary soul, 

on thee, when sorrows rise

 on thee, when waves of trouble roll, 

my fainting hope relies

 to thee I tell each rising grief, 

for thou alone canst heal 

thy word can bring a sweet relief, 

for every pain I feel.”

Anne Steele-1760

Tomorrow: day 29

Yet another early morning tomorrow heading to Atlanta for chemo. This begins the second half of his “delayed intensification” round; day 29 to be exact. So far he has had no severe side effects nor a need to diminish doses. I’m thankful. A week off to wait for counts to recover is not uncommon and he is quite ready to roll tomorrow. His local lab work done yesterday shows increases in all required levels and his ANC is around 1100. Poor but good for this point of therapy. 

Beck will be sedated at 8:00am and they will give him methotrexate in his spine/central nervous. Prior to giving chemo, the doctor will pull a sample to check for leukemia/relapse. Without any indicators I feel confident that we will continue the path of remission but the team of oncologist are ever vigilant. I will know one way or another within 3 days usually. After Beck wakes from sedation he will receive another chemo called cytarabine; this infusion will run for an hour. The next chemo is called cyclophosphamide and is very intense and therefor they require lots of fluids to be given to protect his organs. He will have an hour of IV fluids, then the cyclophosphamide chemo infusion for an hour and then finish off with three more hours of IV fluids. We should be done at the clinic just about the time that all of Atlanta is done with their workday so we will get to hang out with them on I- 285 for a while.

The chemo drug cytarabine is given tomorrow IV but will be given Thursday, Friday and Saturday as a shot. Because the shot will not keep for more than 24 hrs we will be able to take a dose home tomorrow to do at home on Thursday but will be back in the clinic on Friday for a dose and then sent home with a dose for Saturday. Beck will have three days off then we will be back in the clinic next Wednesday for the shot, sent home with one for Thurs, back on Friday for a shot then home with the last dose for Saturday. There is also an oral chemo that will begin tomorrow night; called Thioguanine, it is similar to 6mp as it is given on an empty stomach. Beck will take that orally day 29 (tomorrow) through day 42. This round of chemo allows for the high possibility of infections/fevers/illness as I have mentioned but it also is when Beck is most prone to need blood/platelet infusions and the team will be watching his numbers carefully to ensure he stays within safe parameters. 

I feel sometimes I overexplain things or repeat the same thing many times but the regime is so specific and tedious that it is necessary in order to best share with you how he is. And what he is going through. Today he spent the better portion of our beautiful day out in the yard playing ninjas and riding his bike. His obliviousness to the fight for his very life is a blessing to me. I know that I am struggling with a fatigue that goes deeper than the need for a good nights sleep or a morning spent alone; I am weary of this world. While so thankful for these two children I am blessed to mother I am so very aware of the brokenness that will not cease. Not here. Fighting for joy, which is so much more deep than happiness and is not hinging on circumstances, becomes a daily/momentary routine  of speaking truth to myself. Practically pinned to my forehead is this verse and it soothes. 

Lamentations 3:21-24

But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The LORD is my portion,” says my soul, “therefore I will hope in him.”

If praying for Beck please pray for continued remission. Please pray for me as I mother him and love him and parent him with consistency when so very little in his world is any semblance of consistent. Pray for Linley as she feels less important when she needs my attention more than ever. Pray for my endurance; that I trust the Lord to be gracious when I feel unable to do one more thing and loving when I am less than patient. 

Update/Delays 

Beck slept through the night last night for the first time in almost a month. Because of this I feel like I can both conquer the world and refrain from the 3:00pm Coca Cola that I’ve been seeking daily the past few weeks. The second pulse/week of steroids were significantly more difficult than the first week of this round; there was so very much eating and subsequent puffiness and bathroom trips, Becks sleep was fitful at best and that was just another element to add to struggling with ALL.THE.EMOTIONS and irrational desires or chats about plans each day. And once the steroid frenzy abated, Beck spent a few days sleeping multiple mini naps in the day and a general sense of lethargy. Last week Beck woke once in the early morning hours screaming of leg pain that was only helped by meds, 2am Netflix and some massaging but which seems to have been the turning point in a rough ten day stretch. 

Beck has also lost about 80% of his hair within three days…he got a quick head shave when it got to the point of him pulling it from his head willy-nilly and showing it to me with looks of exasperation “what is this?? What is GOING ON mommy?”. He is happy with his new look though he remarks on his hair loss with a sadness that I had not anticipated. I fully expect that the second half of this round will have Becks head smooth unlike the sweet fuzzy chick look he is sporting now. 

Yesterday Beck had his local labs scheduled. He will often go to the local lab to have his bloodwork taken two days prior to an appointment to determine if his ANC and platelet counts are safe enough to push more chemo in his body. I got a call from the clinic last night that his ANC is at 435 and they are delaying his next portion of chemo. (To compare, a normal persons ANC is anywhere between 2500-8000) So even though this has not happened to Becks treatment yet, it is very typical and not concerning. Delaying chemo a week will allow his body to strengthen prior to knocking it back down…the more his ANC is lowered the chance of infections becomes higher which can be both life threatening and chemo effecting. We are tentatively back on the schedule for the 29th and will get local labs on Monday prior, again. 

Today Beck feels well, despite his feeble bloodwork levels. He is eating his normal (still crazy) amounts of food, sleeping at normal times and only weeping when I limit the amount of reign over the home he feels entitled to. He is really such a tender, silly, spunky kiddo and I cannot help to compare him to Piper these days; their appearances are so much more similar than I had realized. 

Steroids

*cup of chocolate milk, two scrambled cheesy eggs, a blueberry muffin, three pieces of bacon, two bowls of grits, applesauce, Cheese/crackers, sliced carrots,spaghetti and meatballs, two personal size pizzas, raspberries, cup of sunny D, cashews, banana, Chick-fil-A nuggets and fries, snappea crisps, vanilla Greek yogurt with sprinkles, cake pop,spaghetti and three slices of garlic bread, raisins, more yogurt, turkey jerky, chocolate milk and so very much cold, cold, cold water*

This was what Beck ate today…beginning at 4:30 when he stared me awake (is there anything more creepy? I think not) and requested pizza but was satisfied with snuggling up in my bed with me and chocolate milk. I feel steroids give me slivers of an idea of how Beck will eat at 14 and I’m flabbergasted. 

Thankfully with this sort of volume going in there has not been any issue with constipation as is often the case with vincristine as well as lots of potty breaks which help flush last weeks chemo out of his system quickly as is the goal.

This week is off from chemo which is a blessing since winter has finally arrived in Georgia and this means mommy becomes even more hermit-like and less liable to wear jeans and brush my hair. Linleys soccer game was canceled tonight as well as a spontaneous offer to bring us dinner so we hunkered down with homework and a fire in the fireplace and some British Cooking shows…What a perfect way to finish out hard days.

While Beck is currently nowhere near the uncomfortable and weighty place he was right after his diagnosis and subsequent 28 days of steroids, he is certainly not much fun. And since Beck is undeniable a fun fellow today has felt a little slow and sad; except for the frequent cooking I get to do which is quick and exciting. In his eyes. Tomorrow he will take two more doses of decadron and be done with steroids for a few weeks/months. I’m thankful for a few days off of pill pushing and hopefully some calm before the second half of this round which has lots of back and forth to the clinic each week as well as chemo shots done at home by me to Beck. Not looking forward to that. 

In light of hard days and ugly weather I found myself telling myself the things I am so very thankful for today; it’s a lesson in gratitude which breeds contentment and no diagnosis is above that necessity. I am so very thankful for the meals being brought to my door so very frequently. I’m thankful that Linley is old enough to run into Publix for a few groceries while I sit in the car with a nauseated Beck. I’m thankful for both a fireplace and the ability to start and keep a fire going. I’m thankful for gift cards which allow me to treat Linley to Starbucks after a hard Monday. I’m thankful for dry shampoo. I’m thankful for triscuts topped with Brie and sundried tomatoes. I’m thankful for Linleys community who are so willing to help me help her be a normal middle schooler. I’m thankful for my fresh flower budget (it’s a thing and I have one) and Trader Joe’s for making me smile. I’m thankful that the Lord is so sustaining…that this world is so clearly not accommodating what I could ever have desired and that the Lord is gently pulling my heart closer to His. And while doing that he is changing what I desire. What a good, good Lord to care for me and my children as he does.

Round 4: day 16

I took my little fellow to Atlanta for chemo today; he is always up for a clinic visit but was super bummed that I was the only one taking him. So bummed he told me he couldn’t talk about it, closed his eyes and promptly fell asleep for the ride. He’s become more social these days which is tricky since I’m the most lively thing in the house while sister is at school and I’m basically drinking coffee and nodding at his antics. Praise the Lord this round will not/can not last forever. 

Clinic went well. His ANC is down as it is supposed to be and will drop even further after today’s two doses of chemo begins it coursing through his body. His hair is loosening, meaning that I will find a hair or two when I run my hands through it; he also has been doing a lot of hair twisting and scratching himself so I wonder if his scalp is feeling odd. I’ve continued his Zantac between steroid weeks and as always Beck is getting his miralax each day. This morning prior to the clinic visit he began his steroid week. He’s a trooper with that and has a pattern of “pill, water,m&m” and repeats it five times, twice a day. His appetite is steady and good and he has gained about a pound in the past month. Eggs, avocado, roast beef and chocolate milk are the most requested items around here so it isn’t too surprising. 

Beck will have a break next week from chemo as we wait for his counts to both drop then begin their climb back up to a safe number to begin the second half of this round. Tentatively this will be the 22nd of March. Until then we just continue to go watch Linleys soccer games from the safety of the inside of ​

​my car, he will get lots of use out of the new trampoline that has an safety enclosure and yet he still managed to fall off of due to walking around the outside and daily making videos to send to his friends about future play dates; Beck really would not like to be forgotten. 

Today at clinic we saw one of my favorite faces who patiently answered the same (rarely unchanging) concerns I have about Beck. She knew my Piper from diagnosis and knows my fears and experiences; she has walked with /treated/cared for both my kiddos and she is moving to a new state and a new hospital and I pretty much ugly cried the whole way home after she told me so. A, you will be missed. I will not forget you and I’m thankful to have had you and your calm and knowledgeable reassurance around for this chaos.