While I am totally a sucker for fabulous words, I don’t usually like it when people like to tell you what the definition of something is…but, well you know what’s coming.  Let me begin with a bit of history.  The word “cataclysmic” is forever linked in my mind with “pyroclastic.”  Sometime in the late summer of 2006, probably around 2 or 4 in the morning, I sat watching the Discovery Channel while nursing Solveig.  I was intrigued by a show all about the Yellowstone Caldera which essentially told about how Yellowstone is actually a gigantic volcano ready to blow.  The show sported some fancy digital images of what it would look like if there was a cataclysmic eruption resulting in pyroclastic clouds (superheated clouds of gas).  In the fictional movie of what might happen they actually showed the pyroclastic clouds coming up and over the Bridger Mountains from the east and descending upon Bozeman.  Even the rotating horse in front of the old Army-Navy Surplus store was overtaken.  It was truly a cataclysmic event.  Cataclysmic:  1.  Flood or Deluge, 2.  Catastrophe, 3.  a momentous and violent event marked by upheaval and demolition.  So I admit I’m prone to hyperbole, but I feel it’s reasonable to call Allistaire’s 11:15pm diaper cataclysmic.  Her entire back up to her neck and from one arm to another was covered in it. It was spectacular and required a bath, complete change of clothes and all bedding.  Jammies were once again changed at 3:30am and 7:30am.

With a night like that you can imagine that I was quite unsure what our morning HemOnc clinic visit would hold.  This time when leaving for the hospital I brought Allistaire’s bag, just in case she had to be admitted.  In exactly one hour after arriving at the hospital, we were back in the car on our way home!!!  As far as I could tell, Allistaire was the only patient.  A 6 nurses and one nurse-practitioner to 1 patient ratio is AWESOME!  We walked right back, were shown to a room, vitals were done in a flash, then the  next nurse began to draw labs while the nurse practitioner came in and we chatted all about diarrhea and anal fissures and yeast infections and yes, just so many lovely things.  Then the nurse sent off the blood to the lab, the nurse practitioner examined Allistaire and said she looked great and that she looked hydrated and did not appear to have anything at all concerning going on.  The stool sample came back negative for the viruses they tested for so she surmised that the diarrhea is either due to the Roto virus (which they did not test for) or a result of mucositis which is totally common with chemo.  Either way, we just keep supporting her along and we stay at home unless a fever results.  Within only a few minutes, the nurse came back, hooked Allistaire up to the IV to get her infusion (which I learned helps prevent respiratory viruses), then in 10 minutes the infusion was done and the lab results popped up in the computer.  It all happened so shockingly and so gloriously fast!  To top it all off, while Allistaire’s ANC remains zero and her white blood cells dropped a wee bit from 1 to .9, her platelets were up from 35 to 45 and her hematocrit had risen from 28 to 29.5.  In the previous two rounds, Allistaire’s platelets were the first thing to start to rise and once they started they never bounced around like the ANC.  All of this to say, it is quite possible that Allistaire’s bone marrow is recovering and may be on its way up!  Of course we have labs again tomorrow so we’ll see but for now we’ve avoided needing more transfusions!

Thanks for all of your prayers.  Please keep up the vigilant requests for a healthy bottom.  Allistaire continued to have diarrhea throughout the day but quite a bit less frequently and not near the cataclysmic volume and force of last night.  Pray too that she would begin to feel more like eating.  Today was another 10 pieces of cereal day, though this time it was Golden Grahams.  Good choice.

We put green food coloring in some of the pancakes.  That was fun.  That was about the only fun thing about this St. Patrick’s Day.  Yesterday afternoon Allistaire had diarrhea in her diaper during her nap.  Then at dinner time, after asking her to put one last bite of cheese in her mouth, she threw up for the first time in this whole process.  This morning at 6am I was awakened to the sound of painful crying.  Another diarrhea diaper.  Another at 8:30am and at 10am.  I called the HemOnc Fellow on-call.  Another diaper and another call by 10:37am.  I was told to bring her into the ER to be assessed for dehydration and that they would go ahead and do a CBC so that we wouldn’t have to come in tomorrow morning as had been planned.  Three and a half hours at the ER accomplished merely 30 minutes of IV fluids and a CBC and yes, a few diarrhea diapers.  fortunately, even though she was given fluids this was just because she has a line and it’s easy to do so, not because they had any concern that she was dehydrated.  They also took a diaper for a stool sample.  Her CBC showed that her platelets had dropped from 45 to 35 and that her hematocrit was down from 34 to 28.  Her ANC is still zero.  So, no platelets today.  The on site HemOnc Fellow wanted to admit her – why I really don’t understand.  The concession with the ER doctor was for me to come back in tomorrow as originally planned for another CBC and the scheduled infusion.  Apparently, the HemOnc Fellow thought it possible that her platelets could drop to zero in just a day and doesn’t want to wait until Monday.  So, tomorrow we’re back again and then again on Monday.

We praise the Lord that Allistaire has, and miraculously continues to be fever free.  But please, please pray about this diarrhea.  It seems it is somehow quite painful for her.  Her bottom is holding up quite well as we slather incredible quantities of cream on after every diaper.  It is only barely pink in a few spots.  This is a big, big deal in Allistaire’s baby cancer world.  Keeping that bottom skin in good condition is crucial to her health and of course crucial to us being able to stay at home.  Sten and I are wondering if she has sores in her GI-tract.  Mouth sores are very common with chemo and sometimes they show up at different parts of the body like the esophagus and so on.  I’ll be asking about this tomorrow along with when we can expect results from the stool test.  The doctor did say that diarrhea can be a symptom of one of the two viruses she has.  Also, please pray that somehow Allistaire will be willing to eat.  Today her total intake was about 10 Cheerios and a few sippy cups of milk.  She lost .3 kg since I took her in on Thursday.

As you can imagine, this is all a bit stressful.  There is the ever-present possibility that time at home will end at any time.  There is the ever-present hope to avoid the feeding tube.  There is the ever-present fear of something being really wrong.  Please pray.  I’ve changed probably 5 poopy diapers this evening.  None of them are large quantities but even a little seems to really hurt her.  I just changed one 15 minutes ago and Sten has just gone upstairs to change another.  I don’t know what our night will hold.  Please pray for all of us.

Another day begins with cool cheeks and no fever!  Every time it’s “arm pitsy” time, my heart thuds in anticipation of what the little black numbers will say.  Allistaire and I sit there looking at each other while I hold her arm snug against her body.  “Wait beep, beep?” she asks.  “Yep, wait beep, beep,” I respond.  So far, amazingly, Allistaire has remained fever free.  On Tuesday we waited for two hours for her red blood to be delivered (somehow it had failed to have been ordered), then for three hours the blood flowed in.  To top off the extravaganza, Allistaire got her nose swabbed, much to her great dissatisfaction.  Today at her clinic appointment, we were told that the results showed that she has the rhino virus which is essentially the common cold.  There is nothing to do really but watch her, keep taking her temperature and check things out like her ears.  So far she has a bit of fluid in her ears and they are a little retracted but no full blown ear infection.  Should this happen she would probably be given oral antibiotics and potentially one dose of IV antibiotics.  Her examine went great and everything is looking wonderful.  Of course there is the mysterious little purple spot on the top of her left earlobe that does not blanch.  I hate things like this – these little weird things with no explanation that you have to wonder if they will fade away or become a significant indicator of something amiss.  Even Allistaire wanting hugs and to be held is concerning.  The last day or two she’s actually asked for a hug.  Normally this would melt my heart and it still does but now it is combined with deep fear.  The only other time Allistaire was a bit needy and wanted to be held was in the few weeks prior to being diagnosed.  I tell myself, she’s on day 15 of this round of chemo, her counts are down, she’s a bit under the weather, this is the third time her body has been hit hard, of course she’s going to be tired and want more comforting than usual.  But just alongside these thoughts is the memory that I was able to explain away so many things before she was diagnosed that had other plausible explanations but were in fact a result of her disease.  I remind myself that she has lots of energy overall, is cheerful, active, and has great results so far.  I also pray over and over , “Lord, help me to live open handed, resting and trusting in whatever the days ahead hold.  Help me to hand over to you the heavy weight of the future – unknown to me and known to you.”

One thing I am learning is that while I can feel overwhelmed and unable to deal with the possible woes the future might hold, the truth is, when the time comes, God will meet me there, in the present moment, and He will provide for me abundantly.  In the present I cannot see the provision for the future, for walking with the Lord is a daily experience.  I suppose it is indeed the reality of manna, the food that is for but a day.  The Israelites were only given enough food for one day.  Security for food for future days rested not in amassing stores of food but in resting in the promises of the Lord: that He would be faithful and His love for them would not fail, His power to bring about provision for whatever they might need was ever sufficient.  I am more and more convinced that the Lord provides for us in this daily, present way in order to facilitate our reliance on Him and thus our intimate knowing of Him.  In the past years I have absolutely raged against this reality of my finiteness and my need of God.  I have so desperately wanted to not need God because I was so very weary of being needy.  Some other time I’ll tell more of this process, but suffice for now to say that eventually, as I became worn out from the struggle against God, I relented, I submitted and the Lord pulled back the curtain to show me that it is good to need the Lord because it draws me in close to Him and this is the source of sweetest, brightest life.  He does not give me life, He is life itself and as I am more and more bound to Him, I am more and more fully alive in Him.  Such words these are, such dismissable words, but they are the closest I can get to conveying the sweetness in my mouth of coming to know Him more.  It is shocking and humbling to see how fast I leave the Lord behind when life seems to be going well.  So quickly do I forget that all the goodness is directly tied into Him, that He is the source.

I just started reading the Caring Bridge site of a man whose wife had a massive stroke last May.  A few days ago he included a passage from Philippians 3:12 – 14, which says this: “Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.  Brothers and sisters, I do not consider myself to have yet taken hold of it.  But one thing I do:  Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”  This part, “I press on to take hold of that for which Christ Jesus took hold of me,” repeats over and over in my mind.  My life is not vertical, it is at a forward angle as though walking with your head against the wind.  I find myself admonished by the Spirit over and over to, “press on.”  I’m reaching out my hands and seeking to more and more take in the mystery of who God is and to become more acquainted with Him.  I press onto take hold of that for which Christ Jesus took hold of me.  He took hold of me; He extended His mighty arm down into the pit to lift me up that I might know Him.  This is the prize, this is the staggering beauty of the mystery, that I might know the living God!  What absurdity!  What outrageousness that I, Jai Anderson, might actually come to know something of the God of the Universe, the Ancient of Days!  But somehow, it is wondrously true!  The routine and mundaneness of life can often lull me away from such invigorations.  I do not want hardship to be the necessary means to draw me to Himself, but I thank Him for His goodness that is manifested in both the things that I have prayed and asked for and that I delight in and for things that I would never want.

Okay, a few details:  Allistaire’s ANC was ZERO today!  Yeah!  She goes back on Sunday to get a CBC (complete blood count) to check her platelet level, get an infusion of some drug that is supposed to prevent something that I totally forget and platelets if necessary.  Then it’s back to get labs drawn on Monday and clinic.  We are planning on bringing Solveig home tomorrow as she has been fever free since Monday evening and we’re hoping that what she has is simply what Allistaire already has.  We plan on doing lots of hand washing, less nose picking and no kissing – perhaps we could go with no nose picking, but well, they’re little people so probably not. Oh, and we also plan to eat apple & chocolate chip pancakes with bacon on Saturday morning – our favorite weekend family tradition.

Lastly, but so very much not least, is the fantastic news that we may have found a solution to our homes weirdo electrical issues.  Only a few of you know about this but we’ve had a year of dimming and wavering lights with no known cause.  Our buddies at Puget Sound Energy showed up last night around 8:30pm, did some sleuthing and have determined that the neutral wire to our house has nearly burnt out and is the source of the issue.  The man said that it was a good thing that we found this as it can often be a source of house fires.  They have installed a temporary fix and the final solution should be complete within 10 days.  I cannot tell you what a relief this is!  So for those of you who have prayed specifically about this issue – thank you!  And for those who have prayed broadly that God provide for us – thank you!  Wow, how lovely it is when there is a clear, quick and free solution to a problem!

(By the way, this is Allistaire’s attempt at smiling when asked)

This will be quick as I have we have to get on the road first thing in the morning to head back to the hospital – AKA I need to get to bed.

Today went well.  Allistaire got labs drawn and then we went for her dressing change, which thanks to the magic spinning light toy the Child Life Specialist gave us, Allistaire did not cry for even one moment and now we have a lovely fresh new dressing to take us through until next Monday.  Then we were off to our clinic visit.  This is where things slowed down – way down.  We sat in a windowless room with one unfortunate orange wall for an hour waiting for the doctor.  Finally, at 3:15 (2 hours past nap time) the doctor came in and examined Allistaire.  She said she looks great and her lungs sound great.  She does appear to have a bit of fluid backed up in her ears due to being a little stuffed up but no ear infection so far.  Please do pray about this.  Last spring, Allistaire had ear infection after ear infection which meant lots of rounds of antibiotics.  We were scheduled for a transfusion of platelets at 4pm because her platelet level had dropped to 8 (they transfuse once you hit 10), so we mad a quick dash to pick up some food for my lunch and returned for platelets – back in the same ugly room.  Because Allistaire has a cold, she is in isolation.  So then we sat in for the next 2 hours while Allistaire got her platelets.  Apparently I was quite a bit off in my estimation of how long this would take.  Allistaire was so very tired and very cranky but I had her strapped in her stroller waiting for her eyes to close.  At last, after fighting it for way too long, Allistaire fell asleep a little after 5pm.  When we are finished up the nurse was a bit concerned because Allistaire’s heart rate was up (156) and her temperature was 37.4.  This is the temp where they start checking it every 30 minutes.  Praise the Lord, when we got home I checked her temperature right away and it was 36.9.  The rest of the evening Allistaire’s cheeks felt cool to the touch.  I was so prepped in my mind to have to just turn around and head back to the hospital and begin another stay.  I thank the Lord for one more night at home.

Allistaire’s hematocrit (red blood) count was down to 21.3 so she is scheduled at 9:30am tomorrow to get this transfusion which will take 3-4 hours.  I’m quite thankful it is working out to have these transfusions split over two days even though it means two days back to back at the hospital.  Assuming she stay’s fever free, we’ll have Wednesday off and then be back on Thursday for another CBC and clinic visit.  Last bit of good news is that Allstaire’s ANC dropped all the way to 108 (from 1100 on Saturday!).  We near the bottom folks!

I’m very sad to end with incredibly sad news.  I wrote just over a week ago about a young lady who is really struggling in her fight against her cancer (this is in the post “Slice of Pie”).  Her mother, Janet, gave me permission to share her name.  I saw Janet today as I was headed out and I asked her about the PET scan.  Her eyes welled with tears and she said that Sara is not going to make it – that it is a matter of days or weeks.  The tumors have grown.  Lots of Sara’s friends are flying in from around the country to say goodbye.  “I want them to come to say hello, not goodbye,” her mom said.  They are not going to take her home to Butte, Montana, this is where she wants to be because she knows the doctors and nurses.  When I listened to Janet I could only barely cry, I think I am in shock, that the worst has really come.  Please pray for Sara, her mom Janet, her brother Josh, her friend Mattison and the many others who know and love her and whose lives have been impacted by her life and whose lives will certainly be impacted by her death.  I continue to pray for the peace of God which surpasses understanding.

I figured I better catch up on giving an update before our clinic visit today.

On Saturday Allistaire and I went to the hospital to get her labs drawn in order to check her platelet count.  We waited around for an hour to get results back and were then able to leave.  Allistaire’s platelets had dropped down to 28 and her hematocrit to 23.5.  Surprisingly, her ANC had popped up to 1100.  Oh that tortuous ANC, slow to rise and slow to fall.  The clinic doctor felt comfortable that we could wait until today/Monday to have her levels checked again, though she admonished us to call immediately for a nose bleed or any other signs of bleeding.  Thankfully, Allistaire’s rash had so diminished that the nurse really couldn’t even see the faint remains that I attempted to point out.  Also, her diaper rash is very much on the mend.

Our bummer news is that Solveig started to get sick over the weekend and in a very last minute decision, we sent her home with my parents late Saturday evening.  I was incredibly sad about having to do this and kept wanting there to be a way to have her with us.  To have Allistaire at home without Solveig just feels too sad.  In her adorable little way, Allistaire keeps asking, “Where Sissy go?”  Sten kept having to remind me that this is just for a time in our life.  I was comforted that we had made the right choice when my mom called yesterday afternoon to say that Solveig had a 101 degree fever and was laying low.  My fear is that we may not have escaped Allistaire getting sick as she has had a bit of a runny nose the last two days.  Oh how I pray it doesn’t result in a fever.

Around noon today, we’ll head for the hospital, have labs drawn, go to Home Care Services to have her dressing changed, then onto her clinic visit with the doctor.  It is highly likely that she will need to have red blood and/or platelets transfused.  Platelets take about an hour and red blood can take 2-4 hours.  Today has the high possibility of being a very long day.  Of course all of this falls exactly at the time of day that Allistaire usually takes a nap and I just don’t know how the logistics of things will work.  As far as I understand, most kids sit in little curtained-off rooms with TVs and big comfy chairs to get their transfusions.  Somehow I don’t think a little cranky 2 year old is going to sit in a chair for 3 – 5 hours placidly getting blood products, nor do I think it likely that she’ll fall asleep in such a noisy place. Please pray that one of these two options will work.  We’re used to blood while she sleeps or blood while she’s running around the unit, me precariously following along with the IV pole.

You know what though, home, it is such a very lovely thing in our lives.  To go to sleep in my own bed with the sounds of frogs singing in the spring night through our open window and to rise in the morning to the sound of birds (and yes, traffic 😦 ) and shower in my own bathroom where my shampoo and conditioner just magically await for me rather than having to be drawn from a bag I lug around, to drink my cheap, tasty Trader Joes coffee I make for myself and eat my oatmeal with raisins and pecans, to greet Allistaire in her own happy room rather than see her through the bars of a seeming cage – I could go on and on.  So many blessings it is astounding.  Today is the 7th day at home rather than in the hospital – what a gift.

Yesterday Allistaire had her first out-patient Hematology/Oncology Clinic visit.  Each visit they will draw blood for labs and then she will be examined by a doctor or nurse-practitioner.  The following were her blood counts from Thursday’s visit (Day 8 of Round 3):

White Blood Cell Count = 1.2 (down from 3.6 on Monday)

Platelet Count = 69 (down from 388 on Monday)

Hematocrit = 28.5 (not sure what Monday’s was)

ANC = 707 (down from somewhere around 1000 on Monday)

It is good to see the numbers go down and we hope to have a zero ANC by her next clinic visit which will be this coming Monday the 12th.  You can’t go up until you hit the bottom in this case.  Because her platelets had such a big jump down, we will have to go in tomorrow (Saturday) to have CBC (Complete Blood Count) so that she can get a transfusion if needed.

Her exam went great and the nurse-practictioner, Dahlia, kept reiterating how great she seems to be doing.  She does have a slight red rash (more blotchy than spotted and not raised) on her scalp near her ear, that we will keep an eye on.  Dahlia said that as her counts drop further, her immune system will be less able to respond, making it extra important that we be on high alert.  Thankfully the rash looks much lighter today.  On the other hand, a few poopy diapers in a row has created quite a diaper rash.  I’m hoping ridiculous amounts of special calazime cream will get it looking better quick.  Last time she had a diaper rash in the hospital, she was put on antibiotics – something I’m hoping to avoid.  All in all she is doing well – no fever, eating relatively well and doing lots of squealing, running, laughing, skip/gallop dancing.

There are a few sounds in life that are triggers for blissful joy to me.  I hear two of them simultaneously right now.  One is the red-winged black bird.  I cannot see him, but I know he is perched high in a tree nearby, likely one of the poplars.  His watery trill evokes all that is spring.  The other sound is that of two sisters frolicking upstairs, chasing one another, laughing, talking – being silly.  Solveig put her princess nightgown on Allistaire this morning, and Allistaire has continued to wear it all day over her clothes – sometimes with the straw summer hat she found in her closet.  When she woke up from her nap this afternoon she called Solveig by name over and over again.  All this joy at simply being at home together – at the same time I take Allistaire’s clothes out of her purple polka-dotted bag each morning and put them back in the bag at night – never sure when the last day at home, or the last hour for that matter, will be.  It is a very odd and disorienting experience to be constantly on the edge of change, never sure where your are planted.  The beauty of disorientation, or disruption, is that it abounds with possibility.  I took one environmental studies class when I was a student at U.W.  One of the things that I most remember learning is that biological diversity is most abundant at the borders of one sort of environment and another – at the edge of a forrest and a field, at the edge of land and sea.  In these limbo lands,  in this place between places, abundance overlaps with abundance.  My tendency is to want to transition quick as I can from one part of my life to the next.  The place in-between is uncomfortable and unfamiliar.  If I must leave the familiar, I sure want to get onto the next thing so that it can become familiar.  But what might there be here in this place between places that the Lord has to show me?  I have to keep asking God, even this very moment, to be present where He as me and resist the temptation to rush forward.

My apologies for not providing an update sooner.  Last night after Allistaire completed the infusion of her last chemo for Round 3, the nurse took her temperature.  It was 37.2 degrees Celsius.  At 37.4 they start rechecking the temp every 30 minutes to see if it is rising.  Let’s just say we barely made it out.  Today Allistaire has remained fever free and full of joy of playing with Sissy.  It has, as before, been a true delight to see them together.  Overall she’s doing well.  You can certainly continue to pray that she will be fever and infection free, that her appetite will at least be stable, or bet yet, improve and that her body recovers well.  As long as we are able to stay at home, she will go into the HemOnc Out-Patient Clinic each Thursday and Monday.  During these visits she will have labs drawn, be examined by the doctor and receive infusions of red blood and/or platelets as she needs them.  I cannot say that she had a very exciting birthday, but she was home, we were together and she had fun dancing to music, wearing her sunglasses upside down on her face, driving cars, and generally frolicking with Solveig.

Allistaire is just now finishing up her 8th set of doses of chemo out of 10 in this third round.  Each morning she gets Etoposide and Cytarabine and then at night she gets Cytarabine again.  She has done really well.  She is certainly quite tired – sleeping in late in the morning and taking long naps – and is less energetic on the bikes.  The hardest part of this round has been the necessity for eye drops every four hours, including throughout the night.  Allistaire detests the eyedrops and puts up quite a fight.  This makes the midnight and 4am doses especially unenjoyable and thus makes for much more broken-up sleep.  The eye drops are just artificial tears to help with the dryness in her eyes that can result from the high-dose Cytarabine.  I just looked up Cytarabine to make sure I knew how to spell it – wow – it is so fascinating how all of these medications work.  Check it out:

Cytarabine, or cytosine arabinoside, is a chemotherapy agent used mainly in the treatment of cancers of white blood cells such as acute myeloid leukemia (AML) and non-Hodgkin lymphoma.^[1] It is also known as Ara-C (Arabinofuranosyl Cytidine).^[2] It destroys cancer cells by interfering with DNA synthesis.

It is called cytosine arabinoside because it combines a cytosine base with an arabinose sugar. Cytosine normally combines with a different sugar, deoxyribose, to form deoxycytidine, a component of DNA. Certain sponges, where it was originally found, use arabinoside sugars to form a different compound (not part of DNA). Cytosine arabinoside is similar enough to human cytosine deoxyribose (deoxycytidine) to be incorporated into human DNA, but different enough that it kills the cell. This mechanism is used to kill cancer cells. Cytarabine is the first of a series of cancer drugs that altered the sugar component of nucleosides. Other cancer drugs modify the base.^[3]

Etoposide phosphate (brand names: Eposin, Etopophos, Vepesid, VP-16) is an anti-cancer agent. It is known in the laboratory as a topoisomerase inhibitor. It exploits the normal mechanism of action of the enzyme topoisomerase II, which aids in DNA unwinding, and by doing so causes DNA strands to break. Cancer cells rely on this enzyme more than healthy cells, since they divide more rapidly. It is used as a form of chemotherapy for cancers such as Ewing’s sarcoma, lung cancer, testicular cancer, lymphoma, non-lymphocytic leukemia, andglioblastoma multiforme. It is often given in combination with other drugs. It is also sometimes used in a conditioning regimen prior to a bone marrow or blood stem cell transplant. Its chemical make-up derives from podophyllotoxin, a toxin found in the American Mayapple.

I asked you to pray that Allistaire would be fever free and so far she has been.  We truly praise the Lord for this!!!  Please keep praying about this!  I was told that the increased likelihood for Cytarabine induced fevers (versus fevers resulting from infections) is just during the time that she is actually receiving the chemo.  We have just one day left – Monday morning and Monday night and then when she is finished we can head home – assuming no fever.  This means we can literally leave in just over 24 hours – at about 11:30 pm tomorrow night.  It would just be incredible to be able to head home.  Six days in the hospital for chemo feels like nothing.  I mean I just barely moved in and I’ve already begun to pack up!  Thank you for all your prayers.  We are so thankful for God’s protection of Allistaire throughout this process!  Also, let us give a hearty praise to God for “certain sponges” (see note on Cytarabine above) and the American Mayapple that contain some of the secrets of healing my little Sweets.  Isn’t it amazing and wondrous that hidden within creation are all sorts of fantastic means of stopping death and supporting life!!!!

I went into the kitchenette to heat up left-overs for lunch.  Behind me came another mom I had met a few days before.  Within seeming moments of sitting down at the table together, the tears ran down her face.  Over and over she sought to wipe away the flow as she asked over and over, pushing the food around on her plate, how could  this happen to our children?  I look at her and think of what an immense treasure of memories she has collected over these 19 years with her daughter.  So much to mourn for.  She looks at me and asks how this could happen to someone so young, so small as Allistaire.  We mourn for the memories that cannot be lost because they may never be gained.  The hardest thing she says, was eating Thanksgiving dinner in the hospital cafeteria alone and not even being able to get a piece of pumpkin pie.  “Oh mom, we have bigger things to worry about than a piece of pie,” her daughter responded.  It’s true, there are much bigger things to worry about, things that only occasionally we find the courage to speak of.  All of the pain, the fear, the weariness, the sorrow gets heaped on that poor piece of pie.  We can talk of pie.  The necessity of pie on Thanksgiving is something for which we can find words.

My eyes take in her slender frame, the hair an inch or less long and sparse so that mostly scalp is seen.  Her skin a strange shade of orange brown.  Down that narrow rectangular gap where her hospital gown doesn’t fully close across her back, you see a barrage of colors, purple, yellow, raw red.  You don’t get a good look because you wince at it’s sight and turn away.  Her features are hard to distinguish as though she must be lost somewhere behind that weighty, thin gray shadow.

He must be adopted I think.  I see his mom.  I investigate his father’s features.  I see no connection between the little boy I see and these parental faces.  His luscious orbed cheeks distort the proportions of his nose and lips.  Unlike the crashing waves of the mighty sea that know to stop at the shore, hair continues down his scalp over his forehead and down the side of his face.  His eyelashes so long and thick, every girl is envious.  He walks with his mighty torso proceeding him like a man puffed with pride.

The longer you are here, the more faces and stories you take into yourself.  Like some sort of magnetic force, they irresistably bind to you, for you see them not as someone else’s life, but the possibility of your own future.  In a strange way it is like looking into the curving line of time and witnessing what may be your days ahead.  After a few weeks of being here I felt compelled to put an 8X10 picture of Allistaire on the door to her room.  She’s sitting on our unmade bed at home, jammies on and about 8 necklaces strung around her neck like she just flew in from Mardi Gras.  Her white blond hair wisps and curls angelic, big blue eyes luminous, and the warmth of pink life on her cheeks.  This is our girl.  THIS is Allistaire.  Come what may, I silently thrust my stake in the earth and proclaim that though unrecognizable flesh may come it does not define her.  This rotting decay caused by poisons meant to kill the killer will not have the last word.  No matter how it may, piece by piece, pull her apart, the essence of Allistaire, her spirit cannot be taken down by the destruction of her flesh.  The light of her spirit my be dimmed in it’s expression because of faltering eyes, mouth, legs and hands but the flame of her spirit’s life cannot be extinguished.

I wrote these words nearly a month and a half ago.  Before I was done writing, we got the wonderful results from Allistaire’s first bone marrow test and then these words seemed a bit out of place.  We had been seemingly whisked from the land of fear and of the shadow of death out into the hopeful light of day.  But today I want to speak them aloud.  Part of this journey with Allistaire is coming into contact, into closeness with the stories of others.  These are our neighbors, the beings, the spirits that inhabit this small space in the world.  I went to heat up my lunch in the kitchenette today and in came a young woman with whom I have become friends.  She has been staying here for more than a month to help care for her friend who had been here since July. Her friend is the 19 year old girl I wrote of above.  Her eyes were red and soon I was hearing the unspeakable words.  The chemo isn’t working.  The tumors are getting bigger; they are everywhere.  The one in her neck may cut off her airway if it continues to grow.  This was the last type of chemo they could try.  The doctor asked her today if she would want them to put a tube down her esophagus to keep her airway open; if she would want to be on life support.  They are waiting for one more week of chemo before they do another PET scan.  They’ll check then to see if there is any positive progress.  If there’s not, they’re talking about taking her back home.

What can I say?  At some point during the first round I asked one of the nurses if people actually die here on the Unit.  She said sometimes, but that often they are up in the ICU or now I know, perhaps they go home.  Death.  We know it is a real possibility but it is so strange and so foreign despite being so utterly common.  Friends, I implore you.  Please pray for this young woman.  Please pray that the Lord would even now bring healing to her, that He would spare her life.  More than anything, pray that the Spirit of God would move in close, that He would be so very near to her and to her mother.  Please pray that in these strange times between life and possible impending death, that the mighty hand of God would be at work in her heart; that somewhere in the midst of this horror, peace would enter the room and fill her, saturate her.  Ask that God would fully open her eyes to Him that she might see Him fully and be irresistibly drawn to Him.  Oh Father, my heart aches beyond words for her and her family.  What must it be to see the world awakening from winter; to see the sun and the buds on the trees, to know the birds have returned and to remain trapped in the darkened room knowing your own life may be coming to an end.  Father, be gracious to her.  Come along side her and speak clearly to her.  Give her courage.  Give her hope and even hope for joy, for the fullest fullness of life.  Move so mightily in her that she might even find herself eager to let go of this broken flesh that she might see you face to face.  My own hope is this and I pray it for her, “Though my flesh it be destroyed, yet with my eyes, I shall see God.”

Thank you for your prayers, for the ways that you have given of your time and heart on the behalf of another.  Thank you for doing so for this woman and thank for doing so for Allistaire.  Having your own child do so well when another’s may be lost is a strange sort of hard.  We do not deserve life anymore than she does, but for now we have been given it.  Thank you Father for thus far sparing my child’s life.  Thank you for every day that her little flesh rises up once again.  We arrived this morning at 9am.  We are in our same room – again.  Three for three.  What a small but delightful treasure it is.  By 10:10 am Allistaire’s next round of chemo began moving into her blood.  There are two separate chemos that she will get in the morning and one at night, all for five days.  She is scheduled to finish her chemo by 11:30pm on Monday night – the night before her 2nd birthday.  We are allowed to go home after she’s done but must return if she gets a fever.  Unfortunately, the chemo she gets twice a day, which is a 10 times stronger dose than last time, is known to cause fevers.  Please pray that if it is the Lord’s will, He will protect her from fever so that we can return home soon and be with Solveig.  Pray that once again, the Lord would continue to teach me what it is in practice to live with open hands and accept whatever He has for us in the days ahead.

Sorry for leaving you hanging…we just found out around 5pm yesterday…