Monthly Archives: March 2012

Platelets and ANC plunge

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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.

7th Day at Home

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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.

First Out-Patient Clinic Visit

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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.

 

23 Hours at Home…So Far

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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.

One more day…hopefully

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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: EposinEtopophosVepesidVP-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 sarcomalung cancertesticular cancerlymphoma, 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!!!!

Slice of Pie

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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.