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.

It’s a little after 4 in the morning and I can’t sleep.  Allistaire just had her vitals checked again.  What a strange new world we’ve entered.  So many new sounds (beeps and ventilation), new ways of doing things.  Each diaper is put in a bucket to be weighed to help determine how she’s doing with her fluid intake.  When I asked about some diaper cream, the nurse Megan, joyously exclaimed that they have, “a whole algorithm” for that.  Thoughts of calculus came flooding my mind as I tried to see the connection between butt paste and math.  Apparently it’s just a fancy way of saying they are quite thoughtful about what type of cream to use in differing circumstances.  We have a wee little bin – and I do mean wee – in which we can put food in a refrigerator.  You must label each item with the patients name and the date .  Food that is over 48 hours old will be tossed.  Can you imagine coming home from Trader Joes and piling your food into a container about 8 inches by 14 inches, labeling everything and knowing someone will come by and throw it away within hours?  This would just never do for mom – of course I’m guilty too.  Only a few weeks ago I threw away a bottle of lemon juice that expired in 2008.  I hope to figure out how to add some pictures soon so you can get an idea of our new homeland.

As for little Allistaire, she is doing okay though agitated by the confinement of her new life.  Until she gets her central line on Tuesday, she will continue to have an IV in her foot.  She has been drinking well so they have been able to disconnect her from fluids at night.  During the day she is usually attached to her IV pole.  Because her hematocrit was down to 20 yesterday morning, she received 2 transfusions of blood yesterday evening.  I think this perked her up because she was lively, even playful, to past 10pm last night.  Her goofy, toothy smile brings us great delight.  Even her insistent, plaintive, “All Done” during blood pressure checks is adorable.  She is a joy to everyone who encounters her.

I’m going to attempt to include some very specific things for which to pray each day for those who are interested.  At the moment, sleep would be lovely.  There are constant interruptions here at night.  For myself I struggle with sleeping so lightly and lots of neck and shoulder pain which isn’t helped by our sweet “bed in a chair” contraption.  Also, every time I wake up, my mind starts going immediately so that it takes a while to fall back asleep. For Allistaire, she is woken up at least several times each night for vitals, diaper changes, etc.  And for now she has a silly sleeping outfit consisting of her footy jammies that we call, because she does, “Jammie Shoes.”  Because the IV is in left foot, we can only get her arms and right foot into the jammies – zipping the front up is not an option so she sports a little hospital gown over the top to at least semi cover up her tummers.  I imagine this isn’t the most comfortable or warm.  So sleep – pray that the Lord would provide us with as much sleep as we can get and the ability to thrive on less.

Speaking of sleep, I think I should try to re-enter that land before 6 am rolls around and Allistaire has to be poked again for her morning blood test.

Here is the last back story email written Sunday, December 11th:

It is a gray beautiful morning here in Kent with the clouds rising up among the jagged points of the dark evergreen trees on the hill…

I’ll keep this brief for now as Solveig and I are about to head out for church.  About 5pm yesterday Sten and I were told that Allistaire has Acute Myelogenous Leukemia.  I just now had to google AML to see what the “M” stands for – so this should tell you how much I know about her diagnosis.  There will be time for that.  What we do know is that we have 5 months of hard chemotherapy ahead and the real possibility of a bone marrow transplant as well.  The treatment for AML versus the more common ALL form of leukemia, is much harder but much shorter.  There will be four rounds of chemotherapy, each consisting of 5-7 days.  Some days Allistaire will have chemotherapy more than once that same day.  This will immensely lower all of her blood counts.  It takes about 3 weeks for them to come back up to a point where they can do the next round.  The first round and the following three weeks we will have to be in the hospital the whole time.  This means about 4-5 weeks solid at the hospital right off.  After the second round of chemo we will be able to go home with office visits every few days to check her blood.  The doctors said that we would also typically have to go back a few times to stay in the hospital during that 3 week span because of things that come up as part of your immune system being so repressed.  Before each new round of chemotherapy, Allistaire will have her bone marrow checked again in order to look for cancer cells.  If any show up after the first round we will know that she will also need a bone marrow transplant because the chemotherapy is not sufficiently effective.  The transplant would take place after the 2nd or 3rd round in order to suppress/kill the cancer cells as much as possible.  In the event that she were to have a transplant, they would, as part of the transplant process, give her a special round of chemotherapy that would actually completely wipe out her existing bone marrow prior to them giving her new donor marrow.  Depending on the genetic changes that have taken place within the cancer cells DNA, the chemotherapy will either be more effective, less effective or about in the middle at destroying the cancer cells.  This therefore, will be a big determining factor in whether or not she will end up needing a transplant.  They will be doing genetic testing which I think we will get results back from within a few weeks.  They said that getting a matching donor for a transplant is usually not hard -which amazes me.  Apparently Fred Hutchinson Cancer Research Center pioneered bone marrow transplants starting some 40 years ago.  We are told that the results of a transplant here are better than anywhere else in the country.  If at the end of the 5 months they cannot find any cancer cells, Allistaire will be considered to be in remission but will be checked often especially within the first few years.

There are so many thoughts and emotions right now which I don’t have time at the moment to convey.  I am hoping to start a blog in the next few days to make updates easier to access and easier for me to provide and of course to give a more colorful view of our new world.  Your overwhelming outpouring of love, prayers and willingness to help is what – what can I say, it is staggering, it is a comfort.  The Word of God says that we are the body of Christ.  This is a mystery and it is ordinary and mundane.  This is part of the way in which the weight that we bare is dispersed, is spread out.  As we are yoked to Christ – we are yoked to His body which many of your are.  You are one of the beautiful tangible means of hands, feet, voice, and ears.  In the coming days I think we’ll probably start taking you up on your offers of help.

On Tuesday Allistaire will have a central have central line put into her chest.  This is near her heart so that as soon as medicine and chemotherapy is put in, it can quickly disperse into all parts of her body.  This also means she won’t have to have an annoying IV that is so cumbersome right now.  While she is sedated she may also have another bone marrow draw if they need to get more sample.  They will either begin chemotherapy this Tuesday or Wednesday.

As you can imagine, this is not what I thought my life would be like on December 11, 2011.  Of my own accord, I would never choose this road.  I woke up in the night and saw the glowing green light of Allistaire’s monitor – there’s no one in her room.  I didn’t have to step lightly when I got out of bed so as to not have the creaking floor wake her up.   She is not here.  When I went to get the clothes out of her closet I saw the dresses she’s only worn a few times, there is no need for them now.  What can I say?  If I let me mind go down the innumerable roads of how life is not what it was, what I want it to be, what it feels it should be…well the pain is like having the flesh ripped from your bones.  But at some point this morning the Lord lifted my heart and encouraged me not to look at what is not but look at the possibility of what will be – to keep my eyes alert for how He is at work, for what He will do.  Again, here is the Rest He keeps extending to me – it’s like when you’ve been hiking with a ridiculously overloaded heavy pack and someone offers to take it off your shoulders and carry it for you.  There is a strange awareness of feeling light and able to charge ahead.

Much love to you all,

Jai

Here is the email sent out Friday afternoon December 9th:

I just got a call from our doctor who said the preliminary results from Allistaires bone marrow test show tumor cells in the biopsy.  There were no tumor/cancer cells in the blood portion of the bone marrow which is atypical of leukemia.  It looks like this is more likely some sort of cancer where there is a tumor.  We will be heading to the hospital in the next few hours for them to do more blood tests.  Tomorrow they will sedate her and do some cat scans to look for the tumor(s) and potentially do another bone marrow test.  They will do their best to diagnosis what she has so that we can move forward with a treatment plan.  Please keep praying for us.  We have very much felt your love.
Jai

Here’s the email I sent out Thursday, December 8th:

Here is the email update sent out on December 6th:

  A scanning electron microscope image of normal circulating human blood showing red blood cells, several types of white blood cells including lymphocytes, a monocyte, a neutrophil and many small disc-shaped platelets.

I’m going to add in the previous email updates so that everyone can have the whole picture.

This email was sent Sunday, December 4th: