Back in the Hospital

Nate's white blood cells and ANC were too low on Friday morning, so Northwestern prescribed antibiotics. On Friday night he came down with a fever and NW said to go to the Holland ER. His fever did not go down, so NW said he should be admitted. They put him on strong antibiotics and he will stay in the hospital until the blood culture results come in- checking for infections. 

This is very frustrating for Nate. Please pray for no infections, for good blood counts and for patience during another hospital stay. We are weary. 

Home!

Nate came home today!  We are so grateful and amazed.  On Monday his ANC jumped from 0 to .4, we couldn't believe it.  The doctor told Nate unless he developed a fever or something, he would go home on Tuesday.  We held our breath and this morning his ANC was 1.2!  Nate was discharged and home in time for Lexi's birthday supper. Such a wonderful surprise.

There will be a home health nurse coming a couple times a week to check Nate's blood counts.  We go back to Northwestern on Monday for a follow up appointment.  These next two weeks are the most critical for Nate's immune system.  We have to take certain precautions, such as the kids changing clothes after school and washing hands often.  Nate will have his own chair in the family room that the kids needs to stay away from and we will keep our bedroom a kid free (aka- germ free) zone.  We have to clean fruits and vegetables in a water/vinegar solution and cook everything well.  He needs to stay away from crowds.  No gardening or working in the yard.  You should have seen me tonight.  I was pulling out of the driveway and Nate was outside with the kids.  He bent down and picked a weed.  Oh yes, I yelled across the neighborhood-  put that down and go wash your hands!! Ha, he loves me.

Tonight we will be joyful- he is home and one more hurdle is behind us.  We can not truly express our gratitude for the love you all have poured out on our family.  We could never walk this journey on our own.

Please pray for Nate's counts to continue to rise, that his immune system will strengthen.  Please pray for no sicknesses!  Pray for our family as we adjust to the precautions needed.  And pray for our family as we try to re-adjust our roles and hopefully return to a "normal" routine again.

Day +10

Where to start?? Beginning on Friday, Nate's doctor told him that he was doing quite well.  If his absolute neutrophil count (ANC) hit .5, he could possibly go home on Monday.  At that point his ANC was "too low to count," but the doctor told us sometimes the counts can rebound quickly.  So we began praying and kind of getting excited that maybe he would be home by Lexi's birthday on Tuesday! On Saturday, some of his numbers crept upward, which got me all excited- that's a sign the stem cell transplant worked!  However, the ANC number came in later that day and it was still "too low to count."  So technically we did not know if the stem cells were engrafting yet, but the doctor was not concerned.  For a couple days now, Nate has had very low blood pressure in the mornings so they give him electrolytes.  On Saturday evening he had intestinal issues and developed a fever overnight.

This morning he was put on antibiotics and it takes two days for blood culture results.  Once a patient has a fever the doctor automatically has to check for infections and puts the patient on antibiotics.  When you do not have an immune system, infections are no bueno.  Nate also received platelets and blood today as his numbers were too low.  His ANC count today was 0.  Apparently 0 is slightly better than "too low to count."  We are praying hard that Monday morning shows an actual number for his ANC.

And (one) of the crazy parts of this process is that the doctor is not overly concerned.  He assures us that fevers, electrolyte imbalances and bottomed out counts are all normal.  He understands this process can move at a snail's pace, but that it's normal and Nate will keep improving.  Dear God, please let it be so.

These past couple days have put us thru the emotional wringer.  It is so difficult to ride this cancer roller coaster of hoping for the best, but simultaneously expecting the worst.  I just want off this ride.  We all want off this ride.  What happened to our life?

I read a poem today and thought this paragraph was spot on.
"Let hope be not quenched in the blackness of night, Though the cyclone awhile may have blotted the light, For behind the great darkness the stars ever shine, And the light of God's heavens, His love will make thine, Let no gloom dim your eyes, but uplift them on high to the face of your God and the blue of His sky."

It was a gorgeous day today- sunny, blue sky, warmish, everything in bloom.  I sat in my backyard wondering how can this day look so beautiful and our life feel so dark and chaotic?  And why can I sit outside while my husband has to sit in a hospital room for 3 weeks?  There are no answers.  All we can do is lean in, pray for strength and trust that these doctors know what they are talking about.  Because right about now I am thinking this stem cell transplant process is for the birds.

Prayer requests
-Nate's ANC gets to .5 soon
-No infections
-That he can come home this week?!

Day +7, Losing my hair again

Time for a check-in from my cell at the Prentice Women's Hospital.

Things have been very stable, which is to say good, over the past several days.  The medical staff has successfully gotten the nausea under control and the worst side effects I currently have are fatigue and difficultly digesting food including loss of appetite.  My white blood count came back today below their measuring threshold, so I am officially on the re-boot phase.  My platelets are also very low (no blood clotting) so I have to be a little careful and will get a transfusion today sometime. 


I officially have more hair than anytime since last Thanksgiving.  Unfortunately, as I was tugging on my goatee this morning, most of it came off in my hands.  Looks like it's back to shaving for a few more months.  Luckily I have had plenty of peers pioneer the cool bald look for me already. Unluckily, a beard trimmer isn't great as a head shaver. Hoping Stacy can clean up the mess in the picture above.


Life has been mostly boring, which I am assured is good.  I am not yet yelling at the walls, but they are beginning to seem a little stifling.  A visit from the pastor yesterday was good to pass the time.  Thank you also for all of the cards and letters.  They adorn my walls and remind my of the prayer army out there supporting me and my family during this time. 


Prayers for successful engraftment of my new stem cells and regrowth in the bone marrow of my immune system. 

Day +4

Happy Easter to all our readers!  I've been thinking of the despair that Jesus' followers felt between Good Friday and Easter morning and the renewed hope that Jesus' resurrection gave them.  It is good to remember that the trials of this world are temporary, despite how difficult they can be.
 
The past several days have been full of ups and downs for us.  On Saturday all the kids came to visit.  It was awesome to see them again after eight days being apart.  Conversely, it forced Stacy and I to come face-to-face with the challenges that our family is facing.  This is a hard period for all of us and it is difficult to watch how we are all trying to cope with it.  Sometimes all a two-yr-old can do is rage against the world.  The kids were able to spend Easter with family in Chicago.  Special thanks to Aunt Steph and Gpa & Gma J for hauling them all out here. 


My recovery seems to be progressing normally.  My immune system continues to die off.  We then will watch for the rebound which would let us know the transplanted stem cells have re-engrafted into my bone marrow.  I have been battling nausea for the past few days and the medical team is trying different approaches to resolve this.  While the view is spectacular, it is day 11 in this hospital room (if anyone besides me is counting).  I am glad the NBA Playoffs started this weekend to help eat up some of the hours.  Thanks also to Dave for the cards and conversation on Sunday. 


If anyone from Palisades is following this blog - good luck this week.  T-6 days to the outage.  I know you all can't wait.  I wish there were more I could do! 

Day +1

It's a great feeling to wake up knowing the drugs are done.  I'm sure I will be cycling physically and emotionally over the next couple weeks (months?), BUT...this morning the sun is shining, there are no tubes hooked up to me, and no new drugs to deal with.  I am focused on the simple things today.  Looking forward to seeing my kids tomorrow. 


Micah 6:8 - He has shown you, O mortal, what is good.  And what does the LORD required of you?  To act justly and to love mercy and to walk humbly with your God. 

Transplant Day

Nate has his stem cell transplant at 1 pm today. The transplant is a non-event compared to the process of getting to this point. It takes between 15 min-1 hr for the cells to be infused. Please pray the stem cells engraft in the bone marrow. Then we wait for his blood counts to rebound- his immune system to return. Please pray for minimal complications during this recovery period. We know that the majority of patients come down with a fever and need blood transfusions at some point. Please pray for manageable nausea and fatigue. And pray that we can find activities to keep us occupied in this hospital room for the next couple weeks.

Here is Nate's hospital address. Please don't send anything too close to April 27.

Prentice Women's Hospital,

Nate DeMaster, room 1669, 

250 E. Superior, Chicago, IL. 60611.

Four Days In

FYI - this is Nate. 




The transplant team starts a countdown with the chemo days, so I started on Day -6 and am now on Day -2.  That means two more days of chemo, then the re-infusion of stem cells on Day 0.   My oldest has been in a pretty serious car accident, although there were no injuries.  Stacy took the second oldest to the doctor's office this morning with strep throat.  If she's been exposed to strep, that may significantly jeopardize her ability to come stay with me.  It's a hard line to walk wishing Stacy could just be with the kids when they need at least one of us and wishing she were here with me.  I think that may be both of our biggest struggle right now.  We have such great support for the kids, but it's never the same without Mom or Dad there. 




On the medical front, things seem to be progressing smoothly.  The medical staff here has been great at addressing any side effects from the chemo, so it's mostly just been fatigue and nausea to deal with.  I can see Michigan Ave, Water Tower Place, and Lake Michigan from my window.  Not quite the same as fresh air, but I'll take it.  The loop around the hallway I'm allowed to walk is 1/17 of a mile and I need to wear a plastic gown and gloves to leave my room.  Luckily someone invented Netflix. 




Thanks for following the blog.  Any prayers for my family in MI right now are appreciated. 


UPDATE - Stacy was given the green light by the doctors to come see me!  She made it to Chicago around noon today and will be here for about a week.  Thanks to Stephanie (hero Aunt) for covering on the home-front for most of that time. 

Transplant

On Thursday evening, Nate left for Chicago.  Nate checked into Northwestern Hospital this morning.  He will receive 6 days of intense chemo and on April 13 his stem cells will be re-infused.  Then begins recovery time at the hospital until his blood counts are improved enough for him to recover at home.

That paragraph seems so cut and dry, but this whole situation is anything but that.  We are often experiencing blessings and pain simultaneously.  Our family had a long weekend at Boyne Mountain. We had a relaxing and fun time together.  The kids came down with coughs/colds so Northwestern put Nate on antibiotics as a precaution. Thankfully he did not get sick!

And there is pain.  My lament and anxiety have been building and tears were unstoppable last night as we said goodbye to Nate.  Yes, the reality is that people have stem cell transplants every day.  Nate is young and will come thru this fine.  It will not be easy, but he will survive.  But, we also have the reality that things may not be fine.  Nate had to give his advanced directives to Northwestern so they know his wishes.  The reality is that if something happens to Nate, I am 2.5 hours away.  There is no winning in this situation. We are making the best decisions we can in this situation.  I want to be at the hospital with Nate and I want to be with the kids.  And if someone tells me, "kids are resilient" I will scream at you.  We are well aware that kids are resilient, but the reality is there will be fall out.  Behaviors and big emotions are already surfacing, parenting is a struggle right now.  Please pray for our kids, Nate and myself.  This month could be lonely for all of us in different ways.  

I debated whether I should write this update or wait a couple days until my emotions are not so raw.  But, this is our reality right now, what is the benefit of sugar coating it?  We appreciate your prayers and support.