This is the picture I had hoped to put with today’s post – a sort of, “victorious, I’m alive” kind of picture.  I had hoped, and even felt fairly confident, that I could relay the joyous news that yet another blood test confirmed all is well with Allistaire.  I don’t have that confidence today.  Allistaire’s ANC dropped by nearly half since last month – from 1750 to 928 today.  Her white blood cells went from 4.3 to 3.2.  However, and thankfully, her Hematocrit is 40 (last month was 42 and this is a totally insignificant difference) and her platelets are 256 (259 last month).    Our doctor here in Bozeman consulted with Dr. Pollard at Seattle Children’s who said she is not too concerned by these numbers as there can be natural fluctuations or it could be the onset of a virus.  Or it could be the first signs of her cancer returning.  We have to wait 2 weeks and draw her blood again.  Her appointment is set for 11am on November 6th.  Dr. Ostrowski and Dr. Pollard were both encouraged that by all outward signs she is doing very well.

As I sat in the waiting room of the doctor’s office, the minutes ticking by, knowing any moment the nurse would call us back and I would find out her numbers – I sat and read Psalm 34 over and over, clinging to particular verses:

“I will extol the Lord at all times;  His praise will always be on my lips.  I will glory in the Lord; let the afflicted hear and rejoice.  Glorify the Lord with me, let us exalt His name together.  I sought the Lord, and He answered me; he delivered me from all my fears.  Those who look to Him are radiant; their faces are never covered with shame.  This poor man called, and the Lord heard him; He saved him out of all his troubles.  The angel of the Lord encamps around those who fear him, and He delivers them.  Taste and see that the Lord is good; blessed is the one who takes refuge in Him…”  The Psalm goes on and on, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”

My heart is breaking.  I do feel crushing weight on all sides.  “I don’t want this God!  Please, please don’t let it be.  Don’t take my life and rip it to shreds.”  I mentioned to Sten the other day where we could put the Christmas tree come Christmas time and in the back of my mind I wondered if I should even speak of such things – do I even dare imagine Christmas here in this house.  What if it doesn’t come again this year?  What if we are separated again?  What if, what if, what if…I feel myself falling into the dark.  I can’t seem to get a grip to stop my fall.  I don’t see how God is going to deliver me from all my troubles.  The Lord is close to the brokenhearted and saves those who are crushed in spirit, but the thing is – I don’t want to be brokenhearted or sense my spirit crushed.  Can’t you keep me from being broken and crushed in the first place God?  I know that dark place and I don’t want to go back, because this time, I fear the dark will be so much darker than before.  I think I know where that road may end.

My heart is flailing, reaching out for strongholds.  I call out to the Lord.  “Be joyful always, pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”  Give thanks in all things – how God, how?  How do I thank you for this?

“Eat the manna, Jai.”  Allistaire’s little voice perked up in the back of the car as I struggled to see through the tears, driving down the road, attempting to pull it together so that I could do the errands on my list.  I can’t even recall what she said, but God used her little cheery voice to speak to me.  I turned my head slightly and saw her sweet joyful face with the big pink sun glasses on and a row of little white teeth, blonde hair sticking up all crazy from having her snow hat on earlier.  “Eat the manna, Jai,” is what the Lord said to me.  Soak her in.  Take this day that I have given you.  I have given this day to you.  This day – and all that it contains – is a gift from me.  Manna is food for a day.  God has promised provision for me for this day, today, right now.  Manna is God’s Sabbath rest now, here, in this land on this day.  Manna was what God gave the Israelites for food in the desert as they waited four decades to enter the Promised Land.  The manna only lasted for a day.  You could not hoard the manna.  Manna was gathered each day and God faithfully provided it, each day.  “Look around you and give thanks for what I have given you this day.”

Allistaire is alive today.  She is cheery and sweet and singing and spazing out in the shopping cart and woggling her head and she is full of life and joy.  Today the mountains were dusted with beautiful snow.  This morning the blue glowing light of reflected snow filled the house.  Today we are together.  Today the Lord is holding me up.  Today He hears my cry; He is attentive today.  There is no way this is enough to carry me down that awful road.  It’s not supposed to be enough for the journey.  It is enough for today.  I am so far from done learning these lessons.  I am so far from having taken in the full view of God.  The snow is falling again and soon this day will come to a close.  Tomorrow will be a new day, with new manna, new provision, new gifts, new glimpses of God’s goodness.  He promises to take me day by day through all the days ordained for me.  When I set my eyes on the dark road, there is no way not to be filled with fear.  So, I set my eyes on Christ, the author and perfecter of my faith, who for the joy set before Him, endured the cross, scorning it’s shame.  I am on the lookout for Christ, the good God.  I am looking for You, Oh Lord!  I want to see your face.  I walk on, for the joy set before me, sustained today and hoping in Christ for tomorrow.

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Hello Folks.  Yes, this afternoon I am directing this post to each of you – to all the people who have ever read this blog and cared about our life and our little beloved Allistaire – to you in all 44 countries around the world that have read this blog at one time or another and thought to consider the preciousness of a little life…

I am asking for all of you that believe in a gracious mighty God, that you would pray especially for two dear little lives and for their families.

Some of you may remember the, “Stronger,” video one of our AML hospital friends put together earlier this spring.  If it’s been a while, check it out again here and look for Stellablue – she’s the one holding a “Hope” sign while her dad, Andy, holds her little sister, Soren, and pulls her IV pole.

This past January 2012, I was in Bozeman visiting Solveig who was here living with her grandparents while Allistaire was in the hospital.  It was at this time that I first heard about Miss Stellablue who is from Bozeman and who was diagnosed with a Wilms Tumor, which is a type of kidney cancer.  As I sat in Burger Bob’s in Bozeman and read the Bozeman Chronicle article about her, I was stunned to learn that she and her family were also at Seattle Children’s.  I immediately felt a strong bond to them and planned to search them out once I returned to Seattle.  I didn’t have to look hard.  It turned out  that they were in the very room next door to Allistaire.  To meet Andy and Andrea Woods, Stellablue’s parents, is like experiencing a living bit of Bozeman, Montana.  They were a breath of fresh air and made me feel strangely homesick.  Over the following 6 months, I had many occasions to walk the halls with Andy while he held little Soren.  Stellablue’s little sister, Soren, was just two weeks old when they first came to the hospital in September 2011.  I treasured each conversation with Andrea as well.  Both of our families rejoiced in hoping that one day – probably sometime in June, we would all be in Bozeman with cancer-free kids, settled into our homes and enjoying the magnificent beauty of Montana and “normal” life.

It has turned out that Stellablue only had the summer at home.  Routine CT scans back at Seattle Children’s revealed her cancer is back – in three spots on her lungs.  Her dad, Andy, says that they are looking at having to be in Seattle for 6 months to a year this second time.  These are Andy’s words from their most recent Caring Bridge update: “We had our meeting today with the Drs. It went kinda how we expected it to. Stellablue will get chemo, then they will collect her stem cells- as they say to rescue her – after the very strong chemo they will give her after that. If this doesn’t work then all we have left are clinical studies to try.”

More than anything, please pray for Stellablue and that the chemo would be effective.  Please pray too that God would make Himself known to Andy and Andrea, that they would be held up by His great strength and know the comfort of the Holy Spirit.  While prayer is the most important need, the reality is that all of this is extremely financially straining.  They have already had a 10-month stay in the hospital and now they are looking at another 6-12 months.  Andrea really needs Andy to be out there in Seattle as well because if little Soren gets sick, which most 1 year-olds do about every other day, she cannot be in the hospital caring for Stellablue.  Andy’s presence is essential and yet he is also the breadwinner of the family.  As a tiler, his business is in Bozeman and thus not something he can do on the road.  If you have the means and desire to help them out, there is a Wells Fargo account in which you can deposit on their behalf.  The name of the account is, “Stella Blue Woods Family Benefit Donation Fund.”

To keep up on the details of what’s going on for Stellablue, go to www.caringbridge.org and type in “stellabluewoods” in the box to visit a site.  There is also a Facebook page entitled, “Stella Blue Woods Family Benefit,” intended specifically for organizing help for their family.

Months later, in March 2012, I met Pam and Jason Shrauger.  Because the hospital became my home for so many months, I was always very aware when new folks came.  I keenly knew the fear of the unknown, then fear of a diagnosis and the overwhelming reality of a treatment plan and so I always hoped to find a way to show love and support to those who had just come to the hematology/oncology unit and were beginning their journey.  So of course I was drawn to Pam when I saw her in the hall pushing baby Camryn in one of the little car strollers.  Again, it was with mixed joy and sadness that I learned they were from Bozeman.  I recall a few days later when the group of doctors came down the hall and indicated it was time to go into Caden’s room and discuss a diagnosis.  I remember vividly seeing Jason leave that room sometime later – I knew the look on his face – now they knew – Caden has high-risk neuroblastoma.  They were told that it would take 15 months to treat Caden beginning with months of chemo, then a stem-cell transplant, then anti-body therapy…

All seemed to be going well until this August when it became clear that the chemo was no longer sufficiently effective.  Caden was take off of the standard protocol and only days ago finished a week in San Francisco for experimental MIBG therapy which delivers high levels of radiation to neuroblastoma cells, hopefully destroying them and not too much else in the process.  In the coming weeks, they wait for Caden’s radioactivity level to drop and expect to get scans the week after Thanksgiving to determine how effective the therapy was.  If all is well, they will be back on track for a transplant in December.

Please consider including Caden and his parents, Pam and Jason, in your prayers as well.  You can get regular, nightly in fact, updates on Caden also at www.caringbridge.org and type in “cadenshrauger” into the box to visit a site.  I am so thankful for these Caring Bridge sites which allow me to know how to specifically pray.  You can sign up to get an email or text every time there is an update.  If you are interested in ways to support Caden and his family you can go to www.team-fc.com.  It is a strange joy to be bound to another sister-in-Christ, mom, cancer-fighter, Bozemanite – but I count it joy and privilege to know Pam despite the reality that has brought us together.

Thank you too for your continued prayers for Allistaire.  As may becoming clearer, we are ever aware that every day with Allistaire is a gift and we cannot assume that she is done with cancer.  Tomorrow, October 23rd, is her next doctor appointment and blood draw.  Tomorrow marks the fifth monthly blood test and nearly the 6th month since the end of her treatment (she was officially discharged May 2nd).  She seems to be doing well based on all her silly cute spazyness, but discerning what is going on for a 2 1/2 year old can be quite challenging.

Right now it is snowing and the whole world is turning white.  So beautiful!

Okay, so a gigantic pile of moose poop in my front yard isn’t the most important thing you may want to know about our life recently, but it sure did bring me a good laugh.  The momma moose and calf moose were up by the apple trees last week.  What a delight to have them around.

We’ve had a full last month or so.  A few days after we arrived home from our Seattle trip, Solveig started her first day of school as a first grader at Hawthorne Elementary.  Because of all that happened last year, she neither attended kindergarten, nor was fully home-schooled.  She has learned to read and do awesome things like count to 100, but I’m guessing there are gaps.  We are thankful she has a great teacher and is in a K/1 split class.  When I ask Solveig each day what she did in school, she either begins with the important subject of lunch or recess.  Her cousin, Haaken, also is at Hawthorne and so they often get to play together.  Currently she is learning all about the solar system and comes home with cool facts like that the earth rotates around the sun and the moon rotates around the earth. They learned about the phases of the moon by eating away the chocolate top of an Oreo.  Brilliant!  Perhaps Solveig’s favorite part of school, or at least the most anticipated part, is riding the school bus.  She is growing up and has to transfer buses at the high school all by herself.  Here she is on her first day of school:

The week after school got underway, I had the joy of having a dear friend from Seattle come for a week-long visit.  We had a great time enjoying the family and the glories of Montana together.  One day she was here our 16 mile hike inadvertently turned into a 21 mile hike due to a wrong turn which we joyously blame on Sten who claimed the trail was, “well signed.”  We also hit up Yellowstone one day and Allistaire had a great time looking for animals with the binoculars.

Only two days after my friend left, my brother, Patrick, my sister-in-law, Briana, niece, Lucy, and nephew, Elijah, arrived for a great visit.  While a one year old limits how far afield you can go, we had a wonderful time just being together.  Allistaire and Lucy played amazingly well everyday while Solveig was in school.  On their last evening here, we took a glorious hike up Sypes Canyon and enjoyed amazing fall color of every kind and beautiful glowing sunset light thanks to the still present forest fire smoke.

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In between visits, Allistaire had her fourth blood test since she finished her treatment.  She has been doing so well, I nearly forgot to pray before coming in for the appointment.  However, once the doctor was reading back the test results, it began to seem that her white blood count was steadily declining, based on a trend from the last several months.  I asked if it was possible for only one blood line to trend downward if her cancer had returned.  Our doctor spent a while on the phone with Children’s while Allistaire and I waited in the room.  I couldn’t believe it – I couldn’t believe I was once again waiting in a tiny room, trying to hold it together but feeling like I was going to burst.  I fought back the tears and tried to appear “normal” for Allistaire’s sake.  The doctor returned and said that it is true that only one blood line going down could indicate the return of her cancer, but, she had made a mistake.  What looked like a downward trend only looked that way because she had accidentally read the most recent blood test results that showed up on her computer – July’s results.  August had been in Seattle and the blood test that day, on September 20th in Bozeman, had not yet come back.  Needless to say, I was totally relieved and her numbers looked better than they have so far (Hematocrit: 42, Platelets: 259, White Blood Cells: 4.3, ANC 1750).  However, the tears just flowed out.  I could not help it.  I was once again so intensely reminded of the reality of how possible it is for her cancer to return – not that I don’t already think about it every single day – many times every single day.

Living with my beloved and knowing every day that every thing can change in a flash has been the very hardest thing these past four months.  I live with the joy that God has spared her life, but with the knowledge that at any time He could reveal His will that things will change with her.  On Saturday I had the heart-breaking news that Stellablue’s cancer looks like it may have returned.  We met she and her parents, Andy and Andrea Woods, while we were in the hospital.  They were there from last September until this June.  They live only a few miles from us here in Bozeman and went back a to have her regular CT scans and a spot on her lung was revealed.  It could be a fungus that she has been battling, but the doctor is leaning toward it being her cancer.  She had surgery last night to take a biopsy and now they wait to find out results.  Our other friends from Bozeman, Pam and Jason Schrauger, are in San Francisco so that today, their four-year old, Caden, can have MIBG therapy that will hopefully destroy his neuroblastoma.  His transplant had to be put on hold because his cancer did not sufficiently respond to chemotherapy.  This is their one hope that he can get back on track with his treatment.  At the beginning of September, I got word that a young man, Mario, had died – after five years of battling his cancer with 3 relapses and a transplant.  In the end, it was not his cancer itself that killed him, but his lungs gave out.

I thought that it was un-dealt with sorrow, pent-up weeping that was what has had a strangle hold on me these last several months.  I’ve explained my quick temper and lack of patience being due to needing to process what has happened and constantly having to hold everything in.  I have felt like a dam of mighty rushing waters has constantly threatened to unleash.  I have felt brittle and tender – only holding together by the thinnest of skin.  Every single Sunday at church I have cried and cried.  Again I tried to shut down the torrent of tears on my first day in my new Bible Study’s discussion group.  Another woman also found herself crying and was shocked by it – she has had a long list of woes and asks that we pray for her immense sense of apathy.  I understand that – it is dangerous to feel.  To open the door to what is building inside you is too chaotic – that wild, thrashing sorrow that defies control.

The truth is, more than sorrow for what has transpired, there is sorrow for what may still be.  The truth is I have been wild with fear.  It has been a cold, clammy vice around my throat that has left me gasping.  Last week I spent four days all alone.  Four days in a hotel room with the chair in front of the window, the sun streaming in and I wrestling with my Lord.  The truths of those days require savoring so I will write of those on another day.

For now, just one last thing – thanks be to God for bright fall afternoons and shadows dancing across the floors, the trees moving wild in the wind