This is the post I have been wanting to write for over a week but have been too intimidated to attempt.  In the email I sent out the morning after we found out Allistaire had AML, I said that while I struggled with grieving all that is not as it should be, the Lord lifted my spirit and encouraged me to consider what might be.  On that gray foggy morning He asked me to be open to what wonders He might accomplish through this woe.  He reminded me that He does not waste pain, that His ways are not our ways but He promises ultimate good.  A few hours later I sat on an old mustard colored velvet pew at church and listened to the Lord speak to me once again – this time through His word as explained by our pastor.  “God promises that not only will you survive but you will have abundance which will overflow to others.”  This statement stunned me.  I felt as though God was literally talking straight to my face – I suppose indeed He was.  I do not necessarily take this as a promise that God will preserve Allistaire’s physical body, but that He will get me through this with so much blessing that I will, in turn, be one of His means of blessing to others.

In the gospel of John 7:37 – 39, it says, “On the last day of the feast, the great day, Jesus stood up and cried out, ‘If anyone thirsts, let him come to me and drink.  Whoever believes in me, as the Scripture has said, ‘Out of his heart will flow rivers of living water.” Now this He said about the Spirit, whom those who believed in Him were to receive, for as yet the Spirit had not been given, because Jesus was not yet  glorified.”  This is a promise that if we believe in who Jesus claims to be, we will not only have our own thirst quenched but that we will have such an overwhelming abundance of life giving water that others will also be blessed.  To hear a fuller and thrilling explanation of what Christ was declaring you can check out the sermon from December 11, 2011 here .

This quality of extravagance is something I have always reveled in about God.  He is constantly not just giving us what we need but giving us far beyond all we can ask or imagine.  He is a hyperbolic God – He is over the top in every way. Abundance, fullness, overflowing – these He promises even in the desert, in the waste land.  The thing about God though, is He will not be confined to my ideas of what should be – what is good – what is desirable.  He operates on a scale so far beyond me that I cannot even know how to ask for the good that He is offering.  So I seek to submit to His will, trusting in His claim to be the source of life – and not just life, but eternal life, and not just eternal life but abundant eternal life.

I find myself in a land not of my choosing but a land full of opportunity.  God has given me a voice in this place I have not had before.  I just met with a woman at Children’s to discuss some questions I had.  In the course of conversation I was able to tell her about Allistaire.  I was also able to hear about her own burden – her husband who has been cancer free for many years found a lump that they fear may be cancer returning.  They have a few days to wait until the results from the biopsy come back.  As our conversation progressed I told her I would be praying for she and her husband.  Then the Spirit encouraged me to go further.  I was able to sit with her and pray with her in her office.  I left her office after exchanging hugs.  Who could have known?  Who would have anticipated it?  It is a small thing, yes.  Is Allistaire’s life and all the heartache connected worth those few minutes?  It is the Lord who knows how all these moments and days He will weave together into the wondrous story He is telling.  I have had a chance to talk with so many people and hear their stories and tell ours.  I have been able to speak openly about my need for constant looking to the Lord for His sustaining grace.  I remember one fall when I started back to college at UW after a summer working at a Christian camp, I saw a friend on the bus.  She asked how my summer was.  I told her that it was great and about all the fun I had.  I had a great time playing crazy mission impossible night games with the kids, canoeing, going on slug hunts, hanging out with friends on the weekends and teaching young girls from Japan how to ride motorcycles – slow clutch – steady gas.  I did not tell her how God had moved my heart, how He convicted me of my sin and lifted me up over and over.  I subtracted the life giving core right out of those summer months with the Lord.  I offered her a husk of what was true.  I was afraid of what she might think.  I cared more about her opinion of me than about showing her the love of Christ which I have abundantly received and was being offered to her as well.  It is no wonder that people often don’t see our lives as something to be desired – we only let parts of ourselves to be seen.  In so doing we deny Christ and we fail to love one another.

Pray with me for Deb and her husband as they await news from the biopsy.  Pray that the Lord will fill me with His Spirit, that His words would be my words.  That He would give me eyes to see and ears to hear.  That in my fatigue, fear, sorrow, and laziness, His grace would be sufficient for me and He would be pleased to use me and this time in our life to bless others. Ask the Lord to give you eyes to see and ears to hear in the land in which He has placed you.

At Children's Hospital the evening we were told Allistaire had cancer

From the first time you enter Children’s Hospital you are inundated with people who are here to help your child.  Face after face after face.  It is this team approach that has been so impressive and reassuring to me.  I keep trying to figure out who Allistaire’s doctor is.  She doesn’t have one doctor – she has an entire posse of professionals who synergistically work to bring all the resources of science to aid in the fight for Allistaire’s life.  The picture above is of the folks who do rounds each morning.  Every day there is an attending doctor, a fellow (a doctor who has completed residency but who goes on to specialize further), four 1st year resident doctors, transition nurses, and staff nurses.  This is “Team Monday.”  Every day this group of folks come together to update one another on Allistaire’s condition and brain storm on how to best to meet her needs.  The care that Allistaire is receiving is through the Seattle Cancer Care Alliance which is a collaboration between Seattle Children’s Hospital, University of Washington Medical and Fred Hutchinson.  In addition to Team Monday, we have a dentist, social worker, dietitian and Oncology child life Specialist.  The child life specialists have degrees in psychology/counseling etc and then complete clinical rotations. They are the folks that brought Allistaire the special duck who also has a Hickman Catheter.  They are able to do play therapy with Allistaire and with Solveig and talk with me about the emotional and developmental aspects of what is going on for Allistaire and Solveig.  In addition to all these folks there are frequent groups who come in to provide fun for the kids like the gingerbread house making and bring fun toys and gifts to brighten their days.  I can also request a volunteer to come play with Allistaire for a two hour block while I take a shower or just need to get out for a bit.  There are volunteers who push around the snack carts while you wait in the labs and out-patient clinics.  Some juice or coffee and goldfish crackers can do wonders!  At 2pm today I get to have a 20 minute neck and shoulder massage because someone is volunteering their time and skills to bless us caregivers/parents.  Multiple times folks have come by Allistaire’s room to play their violin or other instrument and sing with her.  There is an overwhelming abundance in this place that I cannot stop thanking God for.

In addition to the obvious continued prayer for the chemotherapy to search out and destroy the cancer cells, please also be praying that Allistaire’s Hickman Catheter will continue to function properly.  This morning it was “sluggish” according to the nurses.  They initially thought they were going to need to do an X-ray to check it’s positioning but later in the morning it was working well again.  The more pressing and daily issue is Allistaire’s food intake.  She basically is completely uninterested in eating.  Even the things she used to eat like bunny crackers are of little interest now.  The dietician said that they do not want to see her loose more than 5% of her body weight.  We are trying high calorie smoothies but Allistaire is almost totally unwilling to drink them.  It is very possible if this continues that she will need to get a feeding tube.  I’m not excited about her being attached to one more tube but willing to do so if this is what it’ll take to provide her with the needed nutrients.  Somehow I’ guessing 5 bunny crackers, 3 dried strawberries and 10 bites of egg a day just won’t cut it.  Another mom that I met described her daughter who wouldn’t eat much as being an “air fern.”

It’s about 9:20 on Sunday night.  I’m upstairs in the 5th floor Family Resource Lounge.  I know it’s been 2 days since I’ve written and I want to give you an update.  With a full belly from left over Mod pizza and one seriously tasty taco prepared by Lindsay (thanks Lindsay), I get myself set up with my iPod playing my newest fave band: Ola Podrida.  I can’t stop listening to them.  I know I should get out the computer but an old People magazine from September lures me in with the announcement that Ryan Gosling is dating Eva Mendes.  Somehow writing about drugs doesn’t seem too appealing – not nearly as appealing as hotty totty Ryan.

But I’ve been telling you over and over I’d let you know about chemo, so here it is.  Chemo, at least at this point, is utterly anticlimactic.  As the world winds down and Allistaire gets all cranky from fatigue, we get her all cute and nudy and wipe her down with special wipes that leave an antibacterial coating on her body to protect against infection.  Then on go the footy jammies that Allistaire has always referred to as “jammie shooooes.”  We leave the very top unzipped so the tips of her two lines pop out the top like jumper cables waiting to be activated.  Finally on goes the sleep sack Allistaire cuddles with throughout the day like Linus.  We try to convince her that yet another sippy cup of milk or juice is in her best interest, turn off the lights and blow a kiss goodnight.  At 9:30 pm a (hopefully) stealthy nurse quietly enters the darkness of her room and attaches her lines to the IV machine.  First to go in is a dose of ondansetron to combat nausea.  Then at 10 pm she returns with the first chemo for the night – cytarabine.  This only takes 15 minutes to enter in and infiltrate her body.  At 10:15 pm she is given etoposide over the course of an hour.  During this hour, Allistaire is being checked frequently as it can sometimes cause a drop in blood pressure.  At 11:15 pm she is given daunorubicin for 15 minutes.  She gets one more dose of cytarabine at 10 am the next morning.  On the second day of chemo, she had the same regiment minus the danorubicin which she essentially get’s every other day for the first five days.  The last five days she is only getting ondansetron for nausea and cytarabine twice.  She will get chemotherapy for 10 days for this first round.

It is hard to grasp that such warfare can be conducted in virtual silence, in darkness, so simple and without fanfare.  Tonight will be her fourth night out of ten.  So far she seems to being doing well.  The doctors have said over and over that such small ones do remarkably well, probably because they start with healthy bodies overall and can’t anticipate or dwell on what may come.  It sounds like we can expect to start seeing the impact of the chemo within a few weeks.  Because the chemo kills fast growing cells – any and all fast growing cells, she will likely loose her lovely angelic blonde wisps and develop mouth sores once the thin coating of cells in her mouth and throat are destroyed.  All of her blood levels will start falling as well.  As I understand it her levels will get near zero.  She will be supported with transfusions of red blood cells and platelets during this time.  At some mysterious tipping point her counts will slowly start to rise.  Once her ANC (Absolute Neutrophil Count) gets above 200 we can go home for a week.  When her ANC reaches 750 it will  be time for round 2 of chemo and we’ll return to the hospital.

The goal of this first round of chemo, referred to as “induction,” is to put Allistaire’s body into remission which is defined as 5% or less blasts/cancer cells.  Of course they want that percentage to be as low as possible and ideally 0% which they would refer to as “deep remission.”  At the completion of induction they will do another bone marrow draw to determine how well her body responded to chemotherapy.  If Allistaire is not in remission at the end of induction we are told she will definitely be needing a bone marrow transplant.  A transplant could take place after the second or third round of chemo.  The goal of the doctors in that case would be to get Allistaire into as deep of a remission as possible prior to a transplant.

There is a lot of unknown about the days ahead.  Some folks have asked me how I’m holding up, how I’m handling this.  When Allistaire was born I determined to take each day for what it was.  I intentionally rejoiced in exactly who Allistaire was when she was five days old, when she was two weeks old, 7 weeks, etc.  I purposed to not let my mind wander to what it would be like when she could smile, when she would stop crying so much, when she could sleep through the night, when she could roll over, when she could sit.  I wanted to sit with her and soak all of her little five day old wonder up and enjoy her for who she was that day.  I am a person who is constantly thinking of the future. In a flash of a moment I can plan out the next 20 steps.  Once Solveig got a particularly freakish rash and within minutes I was fretting over what state we would bury her in.  I look forward with anticipation to the good things too – the next holiday, the next trip to Bozeman, the next season.  I struggle mightily with being fixed in the present.  I have Allistaire today.  I will choose to soak her in today.  Today our nurses are Shelly, Danny and Brianna.  Ut is the sweet woman who empties the trash and linens bin.  Jennifer and Ramona are the two Unit Coordinators at the front desk today.  Andy brings the meal trays and snack cart.  This is the life God has given me this day.  The sun rises and the sun sets.  God knows we are finite and need boundaries to care for us.  He has given me one day at a time.  For now He has seen fit to confine me to this place.  I look with expectancy for what the Lord has for me this day.

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Okay, so clearly I’m still trying to understand WordPress, because I couldn’t keep going on my last post.

My point is simply this – there is no prognosis too hard for God.  He can heal Allistaire.  I know that this does not mean He will heal her.  So I keep asking for His healing – I will not stop asking that He show His glory by bringing about her healing.  But at the same time, I submit over and over to the will of God.  He is God and I am not.  Death – we know in every fiber of our being it should not be – it is not what life should look like.  But death is mysteriously and beautifully how God sometimes brings about life in this fallen, broken world.  There’s so much to consider on this topic – another time.

For all of you who have prayed and sent words of love and support  – thank you.  And please keep doing so.  I’ll be sending out a schedule of Allistaire’s chemo in the next few days so you can know more specifics.  So far she has done well.  I am told over and over that little ones tolerate it so well overall.

Here’s some pics from our Nutcracker Night which was beautiful and magical:

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Well it doesn’t look any lovelier outside today but my heart feels a bit lighter – I have VERY good news!

Allistaire is FLT 3 NEGATIVE!!!!

I know, I know you’ll just have to tear up all those “Down with FLT 3” signs you’ve been making.  Okay, so probably you have no idea what I’m talking about.  I’ll attempt a novis’ explanation.  There is a spectrum of AML that is determined by various differences in the leukemia cells.  The FAB (French American British) categorization created designations labeled M0 – M7.  As I understand it these are based on the proteins found on the exterior surface of the cell.  In Allistaire’s case she is either M5 or M7 – they haven’t been able to determine which and may never be able to do so.  Morphologically (as in how it looks under the microscope) she is M7 but cytogenetically (the chromosomal changes) she is M5.  In part of the genetic tests that they have completed they found a specific translocation on Chromosome 11 which is more common in M5.  M5 is made up of monoblasts which are cells that normally become white blood cells called monocytes and macrophages.  M7 is the subtype also known as acute megakaryoblastic leukemia.  The cells are megakaryoblasts, which normally mature into megakaryocytes (the cells that make platelets).  According to one site I looked at, M7 is given the worst prognosis possible.  While it is still true that in comparison to some subtypes such as those with AML M0- M2 who tend to have good prognosis, M5 & M7 have their challenges such as fibrosis in the marrow.  However, in the last 10 years they have learned that these subtypes are not as significant in determining prognosis as the underlying cytogentics – these are the changes that take place at the chromosomal level.  So at last I introduce to you the insidious, evil doing FLT3.  I actually don’t know a thing about FLT 3 except during the sugar plum fairy dance at the Nutcracker last night, all I could think of was FLT3, FLT3, FLT3.  What I have been told is that FLT3 can significantly worsen the prognosis.  So I praise the Lord for this news that Allistaire is FLT3 negative.  If there happens anyone out there however, who reads this who has the same weighty fears of FLT 3 that I have been living with, please know that they are studying a target-chemotherapy Sorafenib that specifically addresses FLT3. More importantly consider the following:

I began reading and reading, asking question after question.  Turning the words of the doctors over and over in my mind in an attempt to understand the realities at work in Allistaire’s body.  This comes from a sense of responsibility to know what’s going on – to be informed.  But you know what else, it’s also a search for peace.  You start reading and you read things like “positive prognosis, ” “dismal prognosis,”  “relapse,” etc and you find yourself caught up in the details – in the numbers.  You know from the first day that only 60 – 70% of AML patients live and you think, “but 30 – 40% die.  That would be fine if I was planning a hike and I was hoping for good weather but this is my kid.”  Then you learn that not only does your kid have cancer, they have the rare kind, the bad kind and you start to feel the weight pile on.  You look and look, website after website, question after question for the good news that says, there is hope.  You do need hope.  I need hope.  I want to put my hope in science, research and these absolutely amazing, kind, wonderful doctors we have.  But what do you do when the research tells you it doesn’t look good.  You feel despair coming upon you like a cold damp suffocation, pressing in on you, cutting off your airway.  I don’t want to hear that Allistaire has the worst case scenario.  I genuinely praise God for this place, for the research that allows for all the treatment and support that Allistaire is receiving and for the compassion, determination and knowledge of our doctors.  Ultimately though, this cannot be the source of my hope.  My hope is in the living God – creator of the universe from all the way out beyond the deep, magical Milky Way and Dark Matter down to Van der Waal forces and even smaller.  My God is the creator of it all – He holds it all in His hands.  He is a God that is able and good.  I know that God can heal Allistaire.  I know that He may not.  This is not hard for Him.  Bring it on you wretched FLT3 – you are no match for the Lord of all Creation – the Ancient of Days.  M5 or M7 – it doesn’t matter.  It is as if I asked you, “Can you pick up this staple?”  And you would respond with audacity, “Of course I can.”  Then I say to you, “But oh, can you pick up this paperclip?  It is ever so much bigger than the staple.”   You would think me ridiculous – why?  Because the weight of a staple or the weight of a paperclip – they don’t matter – they are utterly insignificant to the might of your strength.

I just wanted to you ask for your prayers right now as Allistaire is getting her very first chemo.  This chemotherapy is put directly into her spinal column.  Ask that God would be pleased to bring about death in her cells  – that any leukemia cells hiding away in her spinal fluid would be destroyed.

Afternoon all.  Allistaire is sleeping soundly in her room.  She’s had quite an eventful day.  We both slept well and didn’t actually get up until 8:30 am with only a few interruptions last night.  Thanks for all that prayed for our rest last night!  At 9:45 we went down to get prepped for Allistaire to go into surgery.  They started with the nurse practitioner taking bilateral bone marrow biopsies – one on each side of her upper hips.  These samples were then sent directly to the pathologist to determine if they had sufficient sample.  Next the surgeons installed Allistaire’s Hickman Catheter.  This is tubing that goes directly into one of the veins near Allistaire’s neck.  They make a very small incision into her neck to insert the tube using ultrasound to help them know where they need to go.  Once it’s in the vein, they then tunnel the tube down her chest through fat and it comes out on her upper chest.  The length of the tubing helps reduce the risk of infection by creating distance from the actual vein allowing the body’s immune system to combat invaders long before they could reach the vein.  Once the surgeons completed their portion (which they said went well), the nurse practitioner had to go back in and get more samples due to still having insufficient sample.  All in all, the nurse practitioner took a total of 7 samples.  This is due to a high amount of fibrosis in her bones due to the leukemia.  This has made it challenging to get sufficient cell samples to use as a baseline.  The last poke was a lumbar puncture that goes into her spinal column which will look to see if leukemia cells have migrated there which would then tell them if they have gone to her brain.  Again this is to have a baseline prior to treatment.  At some point during this first round of treatment she will also have chemotherapy inserted directly into her spinal column; she will be sedated again for this.  Allistaire did great and as usual, brought delight to everyone who cared for her this morning.  Isn’t it great that God thought it a good idea to make little people especially endearing?!

We thought we would start chemo today but it looks like we will probably start tomorrow morning.  Sten and I have decided to go ahead and consent to having Allistaire participate in a study for those recently diagnosed with AML.  The study is being conducted by the Children’s Oncology Group.  Allistaire will be randomly selected to either receive the standard course of treatment or have the standard treatment plus an additional type of chemotherapy that has been shown to destroy other types of cancer cells.  I am hoping to provide a clear layout of Allistaire’s treatment in the coming days.

There is so much to attend to upfront.  We need all of these baseline tests to complete before Allistaire can begin treatment.  Then there will be a lot to learn about the treatments she will have and our role in that.  Then there is of course your abundant offers of help.  I think my plan is to let you know each day how you can pray and if there are any specific ways you can help.

My first specific request is this – is anyone a WordPress Guru that could help a sister out?  Listen, I’m not technologically advanced – I still have a dumb phone, have never uploaded a single thing in my life and I have no idea what a widget is.  I really want to use this WordPress resource to communicate our world to you as effectively as possible without it consuming a ridiculous amount of my time trying to tinker around with things.

I leave you with a few pictures of Allistaire’s new digs:

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So on Allistaire’s Cat Scan on Saturday they didn’t see any tumors, however, a backed up bowel they did see – so bring on the laxatives.  This morning, only about a half hour after getting all dressed and fancied up for the day, Allistaire had a blow-out diaper which extended to the crib, bedding and all her clothes.  The result was a nice warm bath in the most terrifying, institutional looking bathtub room you can imagine – think One Flew Over the Cuckoo’s Nest.  After the bath I wrapped Allistaire’s sweet little clean body up in about 5 blue labeled towels.  I cooed to her that she was my little “baby burrito” as we always do after baths.  As I was unwrapping her back in her crib and the towels were drawn back, I beheld her beauty.  How can I describe the luxuriousness of her chubby legs, her mountainous belly and pot hole (belly button), her curling white blond hair, thick dark lashes over blue blue eyes and one adorable dimple on her right cheek?  And I thought, after today your flesh will never be the same.  There will be a tube hanging out of your chest.  Then I realized, there, just inches from me, under the surface of that lovely pink skin, changes have already taken place.  In one moment, the DNA of one cell changed and began a chain reaction that could bring about the end of her life.  I remember when our friend Matt Pearson died in a car accident, I thought, oh what uniquely woeful pain it must be for a mother who felt the first stirring of a life, who was the first dwelling of her child’s life, to witness the destruction of that precious flesh.  I know that tomorrow begins changes in Allistaire’s body that I will be able to see – first a hole, then her hair will start to flee.  I will watch with my own eyes the brokenness in creation caused by that first distrust of God.  A heavy question constantly circling in our immediate and extended family over the years has been, “how can a supposedly good God allow such wretchedness, such suffering?”  I surely do not attempt to offer any sufficient answer.  Not an answer at all, but just a wondering… if we did not experience tangibly in our own lives the pain and suffering that comes from the brokenness God tells us is a result of not putting our hope in Him, a result of sin, would we really believe Him?  I know I tread on dangerous ground here bringing this topic up.  But I feel it gets at the core questions of our lives right now and I ask your patience with me as I attempt to sort out these thoughts.

For now, I implore you, consider your flesh and look it over and begin giving hearty thanks for all the Lord has abundantly blessed you with.  It was only less than 2 months ago that I learned I had awesome enzymes metabolizing medium chain fatty acids every day for the last 36 years.  I had never given thanks to God for sustaining my flesh in this way until we learned that my little sweet nephew, Elijah’s, body can’t. (He was diagnosed with MCAD)  Now I’ve begun to learn about our wondrous blood – how it carries it’s provisions and warriors all through our flesh – protecting and providing nourishment.  We have much to be thankful for!

Overall it was a lovely day with Allistaire!  She is REALLY into riding the bikes here.  I’ll give you all a tour of our new home in the near future – once I figure out how to add pics and videos easier.  As we were making yet another lap around our Unit on Allistaire’s bike, our nurse stopped by to let us know that Allistaire’s surgery to get her Hickman Catheter installed will be at 11am tomorrow, 12/13.  She walked away and my heart beat hard.  I know Allistaire is sick.  But it has been easy to think she is sick in the same way she’s been sick plenty of times in her wee life – now we just have swanky accommodations and lot’s of extra smiling faces to help out.  Last night as I walked around the hospital getting acquainted with the layout, I walked by a young couple pushing a stroller with a little baby in it – she appeared less than 6 months old.  The mom pushed the stroller and the dad pulled along the IV pole with bags of yellow fluid – chemo – connecting to the baby.  Somehow that yellow color and the hazmat stickers that accompany them, well it’s like you know you’re giving your child poison.  A poison that is intended to kill what’s threatening to take your child’s life but that is an indiscriminant killer.  So when the nurse told me the time for Allistaire’s surgery, there was yet another flood of ache at there reality we are in.

Later this afternoon, Sten came to the hospital from work and we met with one of our doctors who gave us a lot of information on what is to come.  I’ll tell you more details about this in the days to come.  What it all comes down to though, is you don’t have a choice.  You don’t get to decide that you don’t want the drug for fear of the side effects.  We submit ourselves to their knowledge and wisdom, we pray to the God who created all things and loves us and we walk ahead.

For tomorrow, please keep praying for good sleep at night, that all would go well in Allistaire’s surgery and additional bone marrow draw and for the our Chemo-Kick-Off.