Year End Summary

(This is a rendition of our Merry Christmas/Happy New Year/Year End Summary Card. Photo courtesy of Tim Golden)

David and I celebrated our 15th wedding anniversary June 8, 2011. Here we are wearing our original wedding attire in the summer of 2010, before I became pregnant with our son. We praise the Lord for our marriage and His model of love, devotion, forgiveness, faithfulness, and servanthood which He is developing in us.

Acceptance with Joy

Chemo Cycle IV is complete, and this Friday, Zoe’s proton radiation therapy ends. We have come so far! Four months ago, it would have been impossible to imagine what our family would experience between the time of Camden’s birth in August and the start of a new year.

In the early days of Zoe’s diagnosis, I found some peace in fantasizing about opting out of chemotherapy and radiation altogether. Each time I laid my eyes on the description of her disease, of the proposed treatments and their side effects, and on the pitifully low survival rate of toddlers with this diagnosis, I was filled with dread. Statistically, not only was Zoe going to die, but she was likely going to experience death only after months of unimaginable terror and pain.

For a time, it felt easier to contemplate bringing her home from the hospital right away, enjoying some family time, however brief, and then mournfully watching her faculties erode and preparing for her burial. I wanted to channel all of my energies into saying goodbye to Zoe and act on the assumption that Zoe was going to die and I may as well get used to the idea. To hold onto Zoe and continue to fuel my love for her from one day to the next would only set myself up for an even greater disappointment when, in the end, I would surely have to bury my child.

As I harbored this fantasy in my heart and mind, I was depleted of energy, even to the point of having difficulty breathing. It was as if I was dying along with my daughter. However, the fantasy I replayed in my mind was based on a lie. To protect myself from what I imagined was a pain too great for me to bear, I chose to assume I knew the future.

The Lord in His power and mercy deftly pulled me from that dark place and reminded me that I was a sheep of the Psalm 23 variety. Although the circumstances were different, I really relate to King David’s experience in II Samuel chapter 22 where so many of my own sentiments are expressed in his song to the LORD when he was delivered from all his enemies and from the hand of Saul:

The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation.

I call to the LORD, who is worthy of praise, and I am saved from my enemies. The waves of death swirled about me; the torrents of destruction overwhelmed me. The cords of the grave coiled around me; the snares of death confronted me.

In my distress I called to the LORD; I called out to my God.

From his temple he heard my voice; my cry came to his ears. The earth trembled and quaked, the foundations of the heavens shook; they trembled because he was angry. Smoke rose from his nostrils; consuming fire came from his mouth, burning coals blazed out of it.

He parted the heavens and came down; dark clouds were under his feet. He mounted the cherubim and flew; he soared on the wings of the wind. He made darkness his canopy around him – the dark rain clouds of the sky. Out of the brightness of his presence bolts of lightning blazed forth.

The LORD thundered from heaven; the voice of the Most High resounded.

He shot arrows and scattered my enemies, bolts of lightning and routed them. The valleys of the sea were exposed and the foundations of the earth laid bare at the rebuke of the LORD, at the blast of breath from his nostrils.

He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the LORD was my support. He brought me out into a spacious place; he rescued me because he delighted in me.

The LORD lives! Praise be to my Rock! Exalted be God, the Rock, my Savior!

The Lord completely freed me from that suffocating, paralyzing anxiety, and negative, prideful thinking, and now I am walking through the valley of the shadow of death in faith rather than in fear. I abandoned the assumption that I knew the future and chose instead to trust the LORD. How incredibly liberating and empowering.

Granted, there is still the valley of the shadow of death.

I have been reading Hinds’ Feet on High Places by Hannah Hurnard and found an excerpt from Chapter 7, On the Shores of Loneliness, that resonated with me in my own journey of trusting the Lord while walking through such a valley. It describes the process of a trial, one’s acceptance of that trial, and the joy available during the trial itself. In her reference to Egypt, Much-Afraid is reflecting on the processes needed to make bread from pummeled grains, beautiful vessels from clumps of clay, and stunning jewels from the furnace:

She had been down into Egypt and had looked upon the grinding-stones, the wheel, and the furnace, and knew that they symbolized an experience which she herself must pass through. Somehow, incredible as it was, she, Much-Afraid, had been enabled to accept the knowledge and to acquiesce in it, and she knew within herself that with that acceptance a gulf had opened between herself and her past life, even between her past self; a gulf which could never again be closed…She did not understand how it happened, but what the Shepherd had said had come to pass in herself, for those who go down into the furnace of Egypt and find there the flower of Acceptance come up changed and with the stamp of royalty upon them. It is true that Much-Afraid did not feel at all royal, and certainly did not as yet look it. Nevertheless, she had been stamped with the mark, and would never be the same again.

Therefore, though she went with Sorrow and Suffering day after day along the shores of the great sea of Loneliness, she did not go cringingly or complainingly. Indeed, gradually an impossible thing seemed to be happening. A new kind of joy was springing up in her heart, and she began to find herself noticing beauties in the landscape of which until then she had been quite unconscious…She had the feeling that somehow, in the very far-off places, perhaps even in far-off ages, there would be a meaning found to all sorrow and an answer too fair and wonderful to be as yet understood…

From the day Zoe’s brain tumor was discovered, my prayer life has evolved. Initially, I asked for wisdom and endurance, physical strength, marital harmony, and faithfulness to the call. I would pray, “God, please give me…”

Somewhere between her diagnosis August 19^th and Thanksgiving, I began praying in the hope of what the Lord would do with the challenges each day presented. A confidence grew in me as I watched Him at work in our life. I would pray, “Thank you, Lord, for already empowering me to meet tomorrow’s challenges.”

Since Thanksgiving, I have been praising the Lord nonstop for bringing me to this place. I sometimes am literally breathless in eager anticipation of how the Lord will redeem this trial for His glory. Already, people who learn about Zoe are exercising a faith they had perhaps long ago abandoned. People are praying for Zoe and praising God for her utter zest for life. I know the Lord is using Zoe to bring people into His kingdom. Broken, sinful people are being redeemed; lives are being transformed. I’m not finding peace in wishfully hoping some of this pain will do somebody good someday. I am witnessing it now! Zoe is an instrument in our Lord’s hands for His glory. Blessed be the name of the Lord!

Epilogue

It has not escaped me that my mother, too, found herself in a place of despair many years ago, and has modeled for me how to chose faith over fear.

She felt utterly ill-equipped for the task of raising her three children in what appeared to be an unsalvageable situation, and was in suffocating fear. She had so humbly esteemed herself, and so overestimated the power of her circumstances, that she asked God to send a more worthy replacement to raise her children. She simply could not believe that the Lord could use her to do something as noble and challenging as mother and shepherd her children through such muck and mire. Had the Lord told her then all that He would do through her as the mother of her three children, she would not have believed it. The Lord more than redeemed that situation, and my brothers and I are testaments to that miracle. Now I, as Zoe’s mother, utterly ill-equipped on my own, am living a miracle. How the Lord uses the broken for His glory!

Gifts

There are just some moments that you never forget.

For days, Zoe has had labored breathing and a low grade fever. Today she is clearly experiencing pain and fear. Her body is stiff and she involuntarily shudders any time she is touched. And yet, as I was leaving her bedside at MGH's Hospital for Children where she is being admitted for pneumonia, her taut face softened, her sunken eyes brightened, and she blew me a kiss. A gift I will treasure. A gift that tells me that she remembers our intimate, affectionate relationship before I became her health care manager. I don't get soft eyes and warm kisses from Zoe anymore. We don't sit together and eat off the same plate or stroke each other's faces or cuddle on the couch to read a book. Virtually everything I do with Zoe hurts her or reopens psychological scars. Administering medications, changing her diaper, caring for wounds, and examining her for signs of sickness all happen many times day and night and are all accompanied by screaming, pushing me away, and betrayal in her eyes. So, when she transformed so strikingly, even if briefly, and blew me a kiss, she helped heal the part of me that aches to have the kind of absentminded affections we used to know together. I'll always remember that kiss and that soft, "miss you Mom" look in her eyes. It will serve to propel me through all of the difficult moments between now and the next loving exchange we have, perhaps weeks from now. Gifts can have that kind of effect.

Last week I opened the door to discover the Peapod delivery man. "You weren't expecting me?" he asked. No, I can't say I had been expecting him, and I definitely was not expecting the large shipment of diapers, wipes, and Tylenol that he delivered. Someone knew the size diapers of my children and two facts: we go through a great many diapers every day, and we must always have Tylenol at the ready. I trust that our secret Diaper Genie knows that we think of him/her each time we are only an arm's length away from a much-needed clean diaper (we have strewn about the apartment). There's something especially heartwarming about being the recipient of a secret Santa/secret admirer/anonymous donor. It just makes you want to do something special anonymously for someone else. Thank you, Diaper Genie!

I have found that gifts strengthen both the giver and the receiver when they glorify the Lord. There are people blessing us as a matter of discipline; there are people who have made financial sacrifices for us; there are people who offer hard-won wisdom to us so that we may grow in insight and courage. Such self-sacrifice develops gratitude, humility, faith, and compassion, and often a joy for life.

We often do not know how far-reaching our acts of kindness and service go. It is possible that the people giving to us cannot relate to the isolating nature of this life, of the challenges to relationships and one's sanity, of the feelings of inadequacy and responsibility that can sometimes be overwhelming, and so it is possible that those people do not appreciate how encouraging their love for us is. Does Janet Rice/Barclay know the level of comfort I enjoy and how much I am learning, each time I pick up Hinds Feet on High Places? Does Diane Kennedy know that she represents to me a humbling host of people praying for my family? Do my Proverbs sisters know the kind of strength I have from simply knowing that they are in my life?

Eric and Sarita give me the gift of their lives as they let me walk with them through their own cancer journey. Some of my mother's friends have given Zoe the gift of time with her father in that they have collectively paid for December's mortgage bill so David could take unpaid leave from work to be with his family.

How can one repay gifts like these? These people and these gifts help make our lives possible. We desire to live honorably in every way (Hebrews 13:18) and be a blessing to those around us. Please pray for our protection and perseverance, that we may glorify the Lord and honor those who have given themselves to us.

Family Update

Look at those cheeks!!! Without the NG tube, Zoe's face is again photogenic, and that baby! Oh my, what a chunk!!

Here's just a quick update since my son is about to wake up and demand my dining services again.

Zoe. Is. Amazing. She has learned dozens of words in the past week and is knitting them together in phrases. She is walking unassisted more and more often. She is far less moody and less vocal than she was a month ago. She is a loving big sister, always calling my attention to Cam when he's crying, and always offering Cam a brief cuddle (until he gets too squirmy).

We have begun using Zoe's g-tube to hydrate her in addition to administering medications and nutrition. She is eating on her own quite well, but doesn't seem to be interested in liquids. It feels good to be able to get water and nutrient-packed foods into her, especially since she's NPO for about twelve hours everyday Monday through Friday because she is sedated for proton radiation.

I spent the day with my two children at the apartment and am thrilled to say that we're all still alive and well. We had a blast. Lots of eating, napping, organizing, and blogging. David has been out in a field somewhere getting paintballed and may venture onto the F1 track later tonight to race against a few friends. Thank you, Jesus, for such a day.

Well, we'll be living in Boston for about the next five weeks, so maybe we'll see Christmas and New Year's from the 17th floor of MGH - What A View!! Right over the Charles and for miles beyond. David took the family out for a leisurely walk yesterday through the Commons and along the Charles River. Just wonderful.

Tomorrow, David's sister, Diane, visits for a week. This will help make it possible for David to get to the office as she will help me in caring for Cam and Zoe. If Zoe makes it through the week without mucositis, then perhaps David and I could go out on the town for a bit.

I send my love to all of you and pray that you know the love, grace, joy, power, and wisdom of the sovereign Lord of the universe.

Chemo Cycle III Medical Update

We have completed 9 of 30 proton radiation treatments and are in the middle of chemo cycle three of about twenty cycles, not including the weekly Vincristine infusions. This Dana Farber ATRT protocol is 51 weeks long if all were to go according to plan, so Zoe's chemotherapy would come to an end next fall. Thankfully, not every cycle will resemble those first two cycles during which Zoe was terribly sick. Changes in medicines and doses used per cycle will dictate Zoe's side effects and time in the hospital.

Chemo Cycle III does not include Doxorubicin since its side effects are exacerbated during radiation therapy. Doxorubicin is credited with being the main culprit in destroying Zoe's GI system during the first two cycles, so perhaps Cycles III and IV will be less painful for her. Also, the dose of Cisplatin was halved because Zoe's hearing has been affected by it (she has permanently lost the ability to hear high frequency sounds; she is still able to hear what would be required for participation in spoken/heard communication). Cisplatin causes a great deal of the nausea Zoe experienced, so halving it, and putting Zoe on three anti-emetic drugs (Zofran, Decadron, and Benedryl), has made Cycle III void of the excessive vomiting spells she had in Cycles I and II. It is possible that this has helped maintain Zoe's electrolytes fairly well.

Next week would be the time when Zoe's mucositis would develop and when she would become neutropenic. If she makes it through the weekend free of symptoms, then she will go to Proton treatment first thing Monday morning, have blood drawn to see if she is eligible for a Vincristing infusion, and then meet with her neuro-oncologist. Each morning, she will continue to have Proton treatments and blood tests until and if she starts showing signs of pain or fever, at which point she would be admitted into MGH's children's hospital.

Oh, about MGH's children's hospital: Love it. Yes, we have only been there for four days so far (as opposed to our lengthy season at Children's Hospital Boston), but those four days have left an impression on us. We were struck by how well the transition went from CHB to MGH. Our CHB/DFCI neuro-oncologists and those from MGH discuss Zoe and make decisions together about her care. Zoe was able to meet with a neurologist and have an exam (Each time a CHB neurologist visited Zoe, Zoe was far too sick to demonstrate her abilities.); her most recent CHB audiology test was considered insufficient and three audiologists at Mass Eye and Ear worked with us for over an hour to get a proper evaluation. And the endocrine team ran tests on Zoe that hadn't been taken before, and we learned about the status of her growth development (It is projected that her growth will always need medical intervention; acutely, her surgery affected her pituitary gland, and proton beam radiation is expected to affect her thalamus, so her hormones are already, and perhaps will always be, problematic).

Neurologically, Zoe is making great improvements. She challenges herself to use her right side and is getting better at standing on her right leg and gripping with her right hand. She still has difficulty bringing herself to look downward. We are wondering if this is due to dizziness and are having an MRI Vent Check on Thursday. The shunt seems to be stabilizing, but not decreasing, the amount of fluid built up in Zoe's brain. We need to learn more about this and if it could play a role in her dizziness. Other possible factors could be the inner ear and/or issues with her ability to see in the lower visual field.

We are still seeking information about the genetic aspect of this cancer and will update you when test results come in. Zoe may also have an Ommaya port installed on the right side of her brain into which chemotherapy would be administered. We are looking for a date between chemo cycles for this surgery.

All Together

Our expanding family has bonded and made some very special memories since our first trip to Children's Hospital Boston on August 19th. Upon seeing the CT and MRI scans and learning of Zoe's brain tumor, we were all ushered to the neuroscience floor where we would spend the next three weeks. We were allowed to all live together in our hospital room which allowed us to grieve and pray and take care of each other and get to know Camden.

We had three weeks at home between then and the start of chemotherapy on October 5th, and that time was solidly packed with appointments for Zoe and getting ready to move out of our home and begin a transient lifestyle split between hospital and hostel.

In the last seven weeks, we have had virtually no time together alone as a family. We have not slept under the same roof or eaten a meal together at a table. Our most intimate moments have all been public. There's nothing like just getting settled in the hospital room bathroom only to hear the oncology team congregate around Zoe's bed right outside the door. Or to have the nurse walk in when you and your husband are trying to make the most of the ten minutes you'll have together all day.

Well, last night, the four of us made our way off of CHB Floor 9 and up to our Boston apartment. Zoe and Daddy enjoyed some pumpkin cheesecake (Thanks Paula!) while Mommy took a bath. All four of us shared the one bedroom. It was sweet and warm and peaceful to watch our babies sleep so contentedly. No monitors glowing or machines beeping. Just Zoe's face under her pink hat and favorite blankie on the twin mattress on the floor next to us, and Cam stretching out in the pack 'n play.

It's the early, dark hours when I enjoy quiet time alone. I have just successfully administered Zoe's medications via her gastronomy tube without waking her, which is a big plus as she's still traumatized by an unfortunate g-tube experience on Saturday with a doctor who forgot she was not under anesthesia, and enjoyed a bit of Heather's quiche. In about an hour, I'll wake up my family and accompany them across the street to MGH for Zoe's proton therapy. When she comes out of therapy but while she's still somewhat sedated, David and I will clean the g-tube site and turn the cap and check for any signs of infection. I may even try to clip her toenails, but I may be pushing my luck. After that, Zoe, Camden, Rachael, and I will acclimate to our new life in the apartment and perhaps visit the new playground along the Charles River, while David tries to address some matters for work.

I write all this hoping you can join me in a collective sigh. Thank you, Jesus, for getting us this far. Together. Still in love and with our sanity in tact. Father, thank you for preparing us for today. Thank you for the wisdom, endurance, patience, and willingness to meet the challenges of today. Thank you for the sea of people who have courageously and sacrificially walked with us, and who have held us up under enormous pressure. May we be people of your love, grace, and joy so that Zoe may know you, and so that you may be glorified. Amen.

Zoe Photos

Here is a photo of Zoe with baby Cam the night before we discovered that she had a brain tumor, and these photos are of her riding her tricycle, climbing stairs, and wearing her signature hat. Her progress since the August 23rd craniotomy is astounding and serves to encourage us as we walk with her through treatment. Her drive to live, to learn, to love is truly inspiring.

Manna

Today is Day 63 of being an inpatient. Chemo Cycle II began Sunday, October 30th; we were discharged at 7pm November 4th; we were admitted to the Emergency Department at noon on November 5th with fever and neutropenia, and by noon on Sunday, the symptoms of mucositis were again ravaging our daughter. It has taken ten days and a great deal of medical attention, but Zoe is finally willing to eat ice cream by mouth tonight.

We spent the day at Massachusetts General Hospital. Zoe arrived from CHB by hospital transport to the pediatric imaging center where she had an MRI of both her brain and spine. The purposes of these images were to plan for proton beam radiation and to gauge the effect of chemotherapy thus far on what is left of her brain tumor tissue. The September 30th MRI showed white areas that could be either cancerous remains from her August 23rd craniotomy, new cancerous growth, scar tissue, or some combination of any of these, so it was important to compare today's MRI with that one, and, at least according to MGH's neuroradiologist, it appears that Zoe's treatment is halting growth and perhaps reducing the white areas. We will hear from Children's neuroradiologist perhaps Wednesday or Thursday and take that interpretation into consideration as we move forward with Zoe's treatment.

Zoe has been able to tolerate her intense chemotherapy and is on schedule with the protocol. She has needed constant hospitalization to do so, but she has done it. She begins proton radiation tomorrow at 8am. She is scheduled to attend proton Wednesday and Thursday, have a gastrointestinal tube surgery Friday, recover Saturday, attend proton Sunday, Monday, Tuesday, and Wednesday, and then have Thursday through Sunday, November 24th - 27th, free. Because she will not have had chemotherapy between now and then, Zoe will not endure mucositis or any of the other side effects of chemotherapy during this timeframe.

Since my last blog on November 4th, we have moved into our Boston apartment. That's right, we're city people now. Our family's case was brought to the attention of the intake assessor for the Proton Beam center and she connected us with housing across the street from MGH that is donated to patients in the program. Although David and I have never actually been in the apartment at the same time together, it is our new home and we are extremely grateful for it. The floor consists of seven families, all at different stages of treatment for pediatric cancer, and all from different parts of the country. Life here is reminiscent of the community feel of a college dorm in that people congregate throughout the day and night in the hall and in the common room, share meals and stories of the day, help each other with errands, and play video games at night. David and I rarely take part in these activities as we spend virtually every second at Zoe's bedside, but we have already felt the love, acceptance, support, and thoughtfulness of our Christopher's Haven community.

Tomorrow morning, I will bundle up Cam, walk the stroller across the street, and meet David and Zoe at the Francis H. Burr Proton Beam Therapy Center. Zoe will be sedated, have a dose of proton beam therapy, (http://www.massgeneral.org/radiationoncology/AboutProtonTherapy.aspx), and either meet with her MGH neurologist or be transported back to CHB where we may meet with her Dana Farber team (appointments are always up in the air until the very last minute with Zoe).

Our 14 pound baby, Camden, will be my constant companion tomorrow as he brings a huge smile to Zoe's face and she loves introducing him to all the nurses. "Aunt" Rachael may help me out for a few hours tomorrow so that we can meet with doctors. Both of my children love her, and she's the type of person who, much like Becky, can think for me and be my hands and feet. Last week, I was driving our van full of medical supplies and baby toys that would be needed for our children to live in Boston. I was about thirty minutes from the apartment when I realized that I could not bring any of the equipment up to our apartment alone (You would have to understand the parking situation in Boston outside a 17 story apartment building and how having an infant means having no hands free to fully appreciate the predicament I was facing). My entire mission was hanging in the balance when I looked at my phone and saw that Rachael had just texted me the names and phone numbers of the women on my floor and insisted that they would be happy to help me any time! Because Rachael had put herself in my shoes and considered what it would take for my project to succeed, she was able to supply me with much needed logistical support that I hadn't even yet considered. Thank you, Rachael!

Last Thursday night, David and I were invited to a special fundraising event called Caring & Culture. Zoe had been out of the ICU a couple of days and was stable, so we left her in Rachael's capable hands, stuffed Camden into a sleep sack, and waded through traffic and rain to The Liberty Hotel where we were introduced to one compassionate, generous, kind person after another. I would love to say that we were witty and fashionable, and dazzled crowds with our knowledge of current events, but really Cam stole the show. That child knows how to work a room. He shamelessly cooed at complete strangers, had his photo taken with beautiful women, and let an artist create a caricature drawing of his smiling face. His big sister was anonymously featured in the Small Can Be Big (http://www.smallcanbebig.org/how/) portion of that night's event, and we are the recipients of the generosity of complete strangers. Our apartment in Boston during our proton treatment is now essentially free. It was substantially subsidized to begin with, and with the money from the fundraiser we can pay for 6 weeks rent. Praise the Lord for that!

I wish I had time to share all the anecdotes that fill my heart and strengthen me for the next day, but I have to get some sleep so I can do Day 64 tomorrow. I would share about all of Zoe's visitors last weekend (Thank you all for being so gracious to me as I was running on adrenaline and for bringing kind words, chocolate, music, and prayer to us!) and how Zoe made her way through psychological and physical challenges up and down a set of playground stairs (Go Zoe, Go!). I would relay the phone call I had with Malia's mom, Megan, and the journey they are on (http://www.maliacrushescancer.com/blog.php), and how they, in the midst of their own unimaginable pain, pray for Zoe every night.

Be at peace knowing that God is giving me exactly what I need everyday.