Monthly Archives: March 2012

Sigh of Relief


We’re tired and a bit grumpy from an early morning, yet again, at the hospital.  But besides that – WE’RE GREAT!!!!

Allistaire’s bone marrow test came back: “in morphological remission,” which means that under the microscope, there is no evidence of cancer.  Of course the microscope cannot detect less than 5% but this is the extent of the testing they do at this point and we are so very thankful.

The results of the echocardiogram showed a shortening fraction of 31% which is the same as it has been four out of five times the test has been run.  The doctor believes this shows that this is Allistaire’s norm, and thus the “drop” from the one test of 41% does not accurately reflect an indication of damage to the heart.  If I recall correctly, she asked the echocardiogram tech what the norm is and he said that over 30% is the normal range.  The cardiologist said that for Allistaire’s age, anything over 28% is within the normal healthy range.  All of this to say, they feel good about going ahead with Allistaire’s chemo according to the standard protocol.  This means they will not be subtracting any medications or chemo treatments, nor reducing dosage.

Another victory was that Allistaire weighed in at 13.8 kg which is the highest she has ever weighed and back to her weight prior to getting sick.  Last night Allistaire ate an individual size container of yogurt, a small baby food jar of tender beef with spinach, a small container of applesauce, several slices of cheese and a handful of cereal.  We’re trying to pack on the pudge in anticipation of the oon to be drop in appetite.

I am so very relieved to be done with another round of chemo and to have yet another bone marrow test result behind us.  Life feels very strange right now – a bit like the suspended feeling of the beginning.  By the time we return to the hospital on Monday, we will have spent one solid month at home.  Even despite the fact that we returned to the hospital 12 days in that time, it has been wondrous at home.  Of course there are things like this very moment, sitting at the kitchen table, watching the wind move the trees and ring the wind chimes on the front porch, knowing that in half an hour I’ll drink my daily cup of 4pm coffee that I make myself with my happy little french press, knowing that Solveig is upstairs happily building a Lego house for her Lego horses while Allistaire naps – there are so many simple wonderful things about being home, but by far the best has been to have Allistaire and Solveig play together.  Nobody makes Allistaire as happy as Solveig.  Solveig is such an amazing big sister, even at her near worst, she is simply over-exhuberant in her affections or in wanting to add one more item to Allistaire’s dress up outfit, or in her perseverance in suggesting a particular game she is simply sure Allistaire must surely want to play.  Not having Solveig and Allistaire together will be the hardest and saddest part of our return to the hospital.

Last night I suddenly remembered to be anxious because I realized it had been two days since Allistaire’s bone marrow test and we had not heard anything.  Waiting continues to be something I resist and really actually despise, and yet it seems to continue to be true that waiting is in fact an opportunity.  Waiting is a pocket of time in which I am offered the opportunity to once again kneel in submission to my Father, to the God of the Universe.  In the simple activities that move me from one point in time to another, I pray to God as I brush my teeth, as I take out my contacts, as I lay down to sleep, as I rise in the morning and shower, as I drive the car.  Mundane tasks which carve out mental space for me to once again look the Lord in the eye and remember what it’s all about.  A few days ago I was organizing the chaos in our TV cabinet and came across a lone VHS Veggie Tales, “The Ballad of Little Joe.”  It is essentially a retelling of the story of Joseph of the old Testament and how his brothers despised him and sold him into slavery.  Eventually, after a series of events, including being thrown in prison, Joseph is given one of the most important roles in the kingdom and ends up being able to provide for the saving of his family from famine.  The summary statement at the end of the video goes something like this, “what man meant for harm, God meant for good.”  God meant for good.  Last night and this morning as I held my head in my hands, I asked the Lord again to help me cling to him, to hold my hands open, to receive what He might give and allow Him to take what He might take.  I asked the Lord again, to be near to me, to help me put my faith and hope in the truth, that come what may, God means it for good.

For now, it is Friday afternoon, and for another couple days we can hold the reality of cancer at bay and simply enjoy being together as a family.  The buttermilk is in the fridge waiting anxiously to be turned into the best pancakes you’ve ever tasted.  Our to-do list is blackened with heavily indented lines declaring accomplishment from top to bottom.  Yes, I’ll have to pack Allistaire and I up, but that can wait for Sunday night.  For now it is Friday afternoon on a windy exhilarating Spring afternoon.

Couldn’t Ask for Better


Okay, well, maybe it would have been a wee bit more enjoyable to sleep in a little later this morning but there’s no complaints here!

By 7:50am we were headed out to the hospital this morning.  Just past Southcenter, the traffic signs said “4 mile backup into downtown – use alternate exits.”  I toyed with the idea of getting off at Albro/Swift and just weaving my way north, but then a long line at the exit convinced me to stay on the freeway.  I don’t know what the deal was but it was a relative breeze getting into downtown.

Once at Children’s we were delighted to nearly run into Piper and her mom.  By the way, I really did almost run into them as I was driving into the parking lot and then proceeded to stop abruptly upon recognizing them which yet again halted their progress.  Sorry, I was overcome with joy.  Later in clinic Piper sported some handsome faux facial hair with at least 3 mustache stickers (there was a huge bucket of them at the front desk).

Labs were drawn and Solveig and Allistaire spent the waiting time before the clinic appointment running up and down the hallway, hand in hand, laughing and laughing.  Another little girl we met, Katie, joined in the fun for a while.

Then we had vitals done and Allistaire had no temperature, a fabulous blood pressure and an increased weight!  She’s up to 13.4 which is up another .3kg since last Thursday.  She is still down .3-.4 from her weight prior to getting sick but the sister is making progress!

Next came Allistaire’s clinic appointment which was all great news.  The weirdo purple spot on her ear was so faded that I couldn’t even figure out which ear it had been on at first, her wee bottom zit is only a pale pink spot, her lungs sounded great, her ears looked great, her heart was great and she had stellar blood counts.  Platelets are a whoppin’ 483, hematocrit 34, white blood cell count 3.1 and then we had to wait for the ANC which is always the last bit of data to come in.  During this brief bit of waiting time we discussed Allistaire’s almost complete lack of cold symptoms and it was decided that she is no longer in isolation.  Yeah!  Then the moment we were all waiting for, an ANC of 837!  Not only was this high enough for a bone marrow test, it is above the 750 threshold for starting the next round of chemo.  This meant we were off to the procedure room.

Allistaire had her bone marrow aspirate and biopsy drawn, was given a flu vaccine shot and received 50mg of Cytarabine intrathecal chemotherapy.  This is a slight jump from what she has been given all previous times.  Now that she is two years old, they up the dose from 30mg to 50mg.  The nurse practitioner doing the procedure said everything looked great and felt great.  Allistaire woke fairly quickly and within a minute or two began her 30-45 minutes of roid rage attitude and then at about the point we were passing downtown on the way home she had settled down.

At home Allistaire was extremely chipper and sweet, downed a fair amount of cheddar cheese, a handful of Golden Grahams and 2 sippy cups of milk before she went down for a nap at 2pm.

So, a full day thus far and one I am both thankful to be mostly done with and so very thankful to have so much going well!  Our last hurdle before round 4 will be the redo echocardiogram scheduled for this Thursday at 10am.  Tracy, the nurse practitioner did not seem too concerned about things but said they would need to get the results from that test and have Dr. Pollard and the cardiologist review it.  We are scheduled for labs and clinic Friday morning and I assume I’ll probably hear results for both the bone marrow and echocardiogram at that appointment.

At this point we’re scheduled to admit next Monday, April 2nd.  This is actually 17 days earlier than the projected date based on the longest time frame per round.  I’m all for getting this show on the road!  Please pray about the possible heart issue and that Allistaire would continue to grow stronger and avoid any more sickness.  Tracy said that the flu is really just starting to come out and that there are a whole bunch of viruses hanging out on the clinic.  Please pray that our last days at home together as a family for a long time will be lovely and maybe even that we would get our old fish room back 🙂Allistaire getting her echocardiogram last weekPiper with facial hair

Unceasing Delight



Here’s our little silly cat Allistaire sporting her new mushroom menagerie shorts from Uncle Jens & Aunt Jo over her elephant footy jammies.  Wow do we love her!  Also, her bottom zit is on the mend and we didn’t have to go to the hospital this morning.  Our next visit is scheduled for Tuesday morning where if her ANC is up to 500, she’ll have her bone marrow test at 11:15am.  Please be praying, as before that they would be able to get a good sample.  The next echocardiogram is scheduled for this coming Thursday.

Heavy Heart


I learned this morning that Sara, of whom I have written, passed away last Friday, March 16th.  This is the link to the obituary.

Unfortunately I have not been able to be in contact with Sara’s mom, Janet, or her dear friend, Mattison, who has been at Seattle Children’s the last few months helping to care with her, so I’m not sure how they are doing.  I am pursuing contact with them and hope to visit them sometime in Butte where they live and Sara was from.

It was shocking to see this picture of beautiful Sara and to know that I never had the opportunity to know her.  The Sara I saw only on rare occasions was already very much being taken down by her disease.  Never will I forget an afternoon on the SCCA unit when the most forlorn wailing I have ever heard came from the closed bathroom 20 feet from where I stood, talking at the front desk with one of the doctors.  We all tried to continue with what we were doing; an attempt to lend privacy to a young woman who, in catching a glimpse of herself in the mirror, grieved the life being stripped from her.  I so wish I could have been there when the time came.  I so wish I could hug Janet and Mattison.  I get so frustrated at how limiting words are to convey such things and frustrated at how hard it is for my being to really take in such a reality.  We all know death is the frequent end of those with cancer, but it is always shocking that it really does come.  I spoke briefly with Andy, Stellablue’s dad, today and we both agreed that we know this is possible but we keep our heads down, taking one step at a time because it is the only way to keep going.

I just began a book today entitled, “Grace Disguised.”  It’s written by a man who lost his mother, wife and 4-year-old daughter in a car accident.  Two brief things have already stood out:  “…it is possible to live in and be enlarged by loss, even as we continue to experience it…I realized that something incomprehensible and extraordinary had just happened.  By some strange twist of fate or mysterious manifestation of divine providence I had suddenly been thrust into circumstances I had not chosen and could never have imagined.  I had become the victim of terrible tragedy.  I ransacked my mind for options that would provide a way out of the pain I knew intuitively loomed ahead for me and my family.  In that brief window of time, I exhausted all possibilities except one.  I realized that I would have to suffer and adjust; I could not avoid it or escape it.  There was no way out but ahead, into the abyss.”

It is an absolutely resplendent beautiful spring day here.  The sun has been out all day and the sky is fresh bright blue.  The cherry trees are blooming and the birds frolic in the air.  Death seems foreign and far off.  But my beloved friends Janet and Mattison and Sara’s brother, Josh, have already entered the dark abyss.  I pray dear God, that you would meet them there.  That in the blackness of their sorrow, in the mundane ordinary of life that goes on regardless, that you would daily and moment by moment show them your face; that somehow, in the midst of this awful time, your mysterious grace would fill them and they would indeed find their souls enlarged.

Bottom Zit, Cough, Shortening Fraction


Again today, probably for the third time, I was told by a different nurse-practitioner how surprising it is that Allistaire did not get admitted last Saturday for her diarrhea.  Again it was reiterated how fast and how seriously sick AML kids can get when they do get sick.    I am very thankful that we have been able to stay home thus far.  While we are nearing the end of this round, there are still some big challenges.  What appears to be one bad zit on Allistaire’s bottom could be evidence of staph infection.  I’ve been given a strong anti-bacterial cream to apply with each diaper change.  Allistaire will have to go back in to be seen on Sunday if it has not improved by then.  Also, while Allistaire’s stools are firming up a bit and have been far less frequent, she still has a cough and a bit of a runny nose.  Thankfully she continues to sound great and her ears seem to have improved, but as long as she has symptoms, she must remain in isolation.  Isolation is not too big of a deal at this point.  It just means we wait for appointments in a different set of chairs, we are seen in select rooms and all the staff have to mask and gown up.  The problem will be if she has not gotten over this by the time we go in-patient.  If she is in isolation at that point, she cannot leave her room without being escorted by a nurse, nor will I be able to use the kitchenette.  Allistaire shut up in her tiny room all day for a month would be miserable for both of us.  Please pray that with her rising ANC (48 today) her body will be able to fight off this cold quick and be symptom free.

I come to the issue of greatest concern.  Allistaire had her fourth echocardiogram today.  Dahlia called this afternoon to say that there has been a significant change since her last echo was done.  In the simplest terms, the echocardiogram measures the hearts ability to squeeze – as in how strong is it or how well is it able to pump blood.  There are a number of different factors.  The two that they look at are the Ejection Fraction which has dropped from 60% to 45% and most importantly, the Shortening Fraction, which has dropped from 41% to 31%.  Because she is still recovering her blood counts and she is technically still anemic (her hematocrit is 29 today) we will wait until her counts recover more to do the test again.  Presumably, once she has produced the appropriate amount of red blood, her heart should not have to work so hard to pump blood.  There are really a number of concerning factors.  There is the obvious concern that there has been damage done to her heart.  In the immediate context, this could impact Allistaire’s ability to get the chemo she needs for this fourth round.  Mitoxantrone, known famously as “Blue Thunder,” is the main chemo of round 4 and is said to be the most powerful of all the chemo drugs Allistaire is supposed to get throughout her treatment.  If her Shortening Fraction were to fall below 27%, they would not allow her to get the Mitoxantrone for fear of severe cardiac consequences which are especially possible with this particular type of chemo.  As you can imagine, the prospect of heart damage and/or the prospect of her not being able to get one of the most important chemos to fight AML is awful.  I beseech you for your prayers about this.  The one possible bit of hopeful info with this is that when I asked for her baseline numbers from the echocardiogram that they did prior to treatment (on Dec. 10th), her Shortening Fraction then was 32%.  On her second echo on January 16th, it was 31%.  Today it was 31%.  Only on on the echo after round 2 on February 16th was it 41%.  All of this to say, that as Dahlia looked up these past numbers, she suggested that perhaps that this was good news and that Allistaire’s norm is around 31%.  I am hopeful that this is the case.  She will be discussing this with Dr. Pollard and the cardiologist.

Lastly, while Allistaire’s bone marrow test is still currently scheduled for next Tuesday, I learned today that her ANC must be 500 this time for them to do the test.  I’m not sure why the higher numbers but this just means that while we will still go in for labs and clinic on Tuesday, if her ANC is not high enough, the test will be pushed back until Thursday or Friday.  We also went ahead and decided to push back her admit date until Monday or Tuesday, April 2nd or 3rd just so that she can have a few more days to raise her blood counts, get over this cold and for us to have the weekend together.  If her counts are simply soaring, it is possible to have the bone marrow test on Tuesday, clinic on Friday and an admit on Sunday.  They just have to wait to get back results from the bone marrow test before admitting and she must be seen within 72 hours prior to being admitted.

Friends, I cannot tell you how much your prayers have meant to me.  I am constantly astonished that Allistaire continues to be fever free.  I’ve been amping myself up for the big last round but now I feel added stress due to Allistaire being sick and the possible issues with her heart.  Please pray that God would continue to sustain her wee precious flesh.  As has been the case, Allistaire simply gets cuter and cuter, more and more hilarious and more and more dear to us.  I cannot tell you how many times in the past two weeks Sten and I have just looked at each other in wonderment at what a little character she is.  Now that she is talking so much more she just holds tighter to our hearts.  I love my little girl more than I can say and I desperately want her well and without permanent damage.

I leave you with these words from the results of Allstaire’s last bone marrow test (I just requested these printouts today), as a testament to what the Lord as already done, showing his kindness and provision in our lives:

From the Flow Cytometry Test:

“Bone marrow, aspirate: No abnormal myeloid blast populations identified.  There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.”

From the Bone Marrow Microscope Finding:

“Diagnosis:  Right Bone Marrow Aspirate and Biopsy: Acute Myeloid Leukemia in morphologic remission”



Who knew?!  So many great things!  Allistaire slept all the way through the last night without painful crying.  I woke her up at 8:30 to head to the hospital and she did have a diarrhea diaper but the bottom’s still looking good.  We got to the hospital in time for labs and then hit up Starbucks while we waited for her clinic appointment rather than going for a dressing change as scheduled.  Apparently there was some sort of disease contamination that required special cleaning before we could enter.  We headed back to clinic and had about a 20 minute wait.  This is one of the best parts of clinic – you get to see all the old beloved faces.  We had the joy of seeing little Annabelle and her mom and dad that we haven’t seen in two months.  She is much improved by all appearances and they await scans in a month that will tell them how effective the chemo has been.  I almost didn’t recognize little man Mason because of his slimmed down appearance which shows off his handsome face.  It was great to see he and his mom, Stefanie, for a few minutes.  Then we saw Shannon with her very little guy, Jaxson.  On our way in to get vitals and weight we ran into Sam’s mom, Heidi, who we miss so much.  It is a strange and wonderful thing to be bound in this way to others who have or are fighting a similar fight with a similar foe.  The taunting thing is that we are in isolation because of Allistaire’s cold which means we have to keep a sizable distance and there just isn’t nearly enough time to chat.   Nevertheless, it is so delightful to see faces that we love and mean so much to us!

Our nurse practitioner, Tracy, examined Allistaire and says it looks like she’s improving but we are not totally out of the woods yet.  She affirmed the concern of the ER HemOnc fellow who was considering admitting her.  While I really don’t understand it myself, obviously from severe lack of knowledge and experience, the chemo regime for AML is just so incredibly harsh that it suppresses the immune system far more than most other chemos.  Also she said that when AML patients do get sick, they can often get severely sick extremely fast.  The threshold for readmittance is extremely low.  Apparently, only up until the last few years, AML patients had to stay in the hospital the entire time.  I cannot tell you how thankful that we have had the opportunity to be at home these past 2 weeks!  We are elated that her ANC popped up to a whoppin’ 13 today!  Her hematocrit is up to 30.7 and her platelets nearly doubled going from 45 to 81.  It looks like we’re on the upward swing which is totally amazing to me!  We are actually scheduled to have Allistaire’s next bone marrow test next Tuesday and to readmit for round 4 on Friday, March 30th.  Of course this is all contingent on Allistaire’s counts as she has to have an ANC of 750 to start her next round.  It is just surprising to me because I had in mind that she would start round 4 sometime between April 7 – 14th.  This would put us a week or maybe even 2 ahead of what I had been thinking.  While I’m not super excited to be back in the hospital for a long time, I’m ready to get this thing done!

Thank you for all of your prayers for so many things.  Please keep praying for the diarrhea to disappear all together and for her little bunzers to stay healthy and for no fevers.  Today she ate a tiny bit better – she ate 2 1/2 pieces of cheese along with a bit of cereal and probably about 4 sippy cups of milk.  I’m really praying and hoping her appetite will increase because she lost almost one kilogram since her appointment last Thursday.  The nurse-practitioner said we’ll give her a chance to regain some of that lost weight but that we will need to keep a close eye on her and problem solve if she keeps going down.  What did encourage me was the fact that she did not fight me to get into her chair to eat and while she did to eat much, she was in a very chipper mood.  Before and after dinner, she and Solveig had lots of fun together and she seems to have some energy returning.

Last but not least – sorry Nick for the alarming blog post title yesterday.  Like I said, I’m prone to hyperbole 🙂



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.

Not my favorite St. Patricks Day


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.

Day 15 and Still Fever Free!!!


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)