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Urgent Prayer Request for DS

eaglei

By eaglei,
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eaglei
eaglei

To Those Who May Still Remember Me . . . I think of you often and remain very grateful for how you lifted dh, ds, and I so faithfully in prayer. My intentions have been many and often to pos

eaglei
eaglei

Hello Everyone, I know it’s been a long while since I posted here, on this thread.  I have not forgotten you and all the most-appreciated prayers, support and kind thoughts you sent my way.  I ha

eaglei
eaglei

April 5, 2015 Hello, Everyone, God is so good! If you could see ds, you would wonder how anyone could think he needs a bone marrow transplant! It is God’s mercy and grace that is - and has - kept

  • 2 weeks later...
Entropymama

Entropymama

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I've been thinking about you and went looking for an update - I see that the last one was a couple weeks ago. I am praying for you and your family. Two month ago my dad was diagnosed with stage 4 lung cancer, so I'm adding my prayers and my understanding (to an extent) to what you're going through. 

 

:grouphug:  :grouphug:  :grouphug:

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eaglei

eaglei

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First - Thank You for your prayer support!  Words fail to convey just how important it is and just how much we depend upon it - and more importantly, how your prayers are being heard and answered.

Second - My computer crashed and I cannot afford to replace it, so I am sending this out after hours from work (with my bosses’ permission).  I will likely be rather incommunicado more often than not these days . . .

Third - Much has happened since my last update when I posted that ds was taken to ICU.  Here’s some of it.

Friday, April 11:
 -- Nurse found ds passed out on the floor of his room, unresponsive.  Emergency procedures begun.  Ultimately transported  to ICU.
 -- Blood pressure so low he was placed on four BP medications.
 -- Not breathing well; placed on ventilator.
 -- Febrile.  Upper 102 range.  Packed in ice.
 -- Mild pneumonia in both lungs.  Antibiotics begun.
 -- Septicemia.  Three broad-spectrum antibiotics begun.
 -- Inserted tube down his throat to his lung to lavage it.
 -- Blood/platelet transfusions as needed.
 -- Cat scan on head since he bruised his head when he fell.
 -- Blood cultures drawn.
 -- Sedation, mostly for his comfort.
 -- Critical condition.

Saturday, April 12:
 -- Some change.
 -- More breathing on his own, but still needed ventilator.
 -- Two BP meds removed; BP still dangerously low.
 -- Still febrile, mostly 100 range; no longer packed in ice.
 -- Various enzymes either too high or too low.
 -- Bilirubin up; concern for liver.
 -- Blood/platelet transfusions as needed.
 -- Cat scan clear.
 -- Communicating lucidly, including writing notes.
 -- Sedation increased for his comfort as ventilator making him feel like he’s choking, can’t breathe.
 -- Critical condition.

Sunday, April 13:
 -- Made “great strides†today; “clinically looking much better.â€
 -- Breathing 100% on his own; ventilator still attached as backup, if needed.
 -- One BP med titrated down.
 -- Low-grade fever with periods of normal temp.
 -- Bilirubin still elevating; liver concern elevating.  Could be  side-effect of chemo - or not.
 -- Transfused with two units blood and one unit platelets.
 -- Began small, slow amounts of tube feeding.
 -- Results of blood culture in.  Is septicemic due to e-coli.  One  broad-spectrum antibiotic removed; remaining two continue as they are what they would have medicated with from the start had they  known it was e-coli.
 -- Still sedated.
 -- Critical condition but stabilizing.

Monday, April 14:
 -- “Good progress today.â€
 -- Late evening all BP meds removed; BP normal.
 -- Temp in 99 range.
 -- Concern growing over liver, and now gall bladder; scans ordered  for Tuesday.
 -- Sedation slightly lowered; needed for “comfort†with backup  ventilator tube not yet removed.
 -- Several IV tubes removed.
 -- Critical/stabilizing.

Tuesday, April 15:
 -- BP remains normal on its own; however, is somewhat soft; if it  trends downward, will restart BP meds.
 -- Temp 99 to 100 range earlier in day; later afternoon 98 range.
 -- Sent for liver and gall bladder scans.
 -- Gall bladder infection; initially wanted to place a drain in gall bladder for a few days to a week; reversed this decision as doctors are afraid that, being severely immuno-compromised, the placing of a drain could cause another infection; typical response would be gall bladder removal but cannot do surgery intervention because of  immuno-compromised system; unsure whether infection is chronic or chemo-induced.
-- Received phone call at 11:30 p.m. from a doctor telling us they needed verbal permission to do an emergency drain on the gall bladder.  Dh and I not at peace with it.  Doctor finally admitted we could wait till next day to decide as team of doctors not in agreement.  This, however, was his area of expertise, and he was most concerned that gall bladder would burst.  Dh gave verbal permission in event of further deterioration during the night - otherwise, no.

Wednesday, April 16
-- Met with the various doctors who were now all in agreement - gall bladder must be drained as a preliminary step to gall bladder removal when ds more physically stable.
-- Dh and I at peace with decision to give consent.  Dh signed consent forms.
-- BP still good, but with some soft areas.
-- Temp on a febrile-to-normal yo-yo.
-- Very jaundiced.  Bilirubin very high (15.9 and trending up).  [Gall bladder affects the liver].
-- Still unresponsive from medically-induced coma from the sedation.
-- Later in the day, doctor with whom we had spoken the night before ordered platelets to be run while he inserted the drain.  After a much longer waiting time than we had been told, doctor met with us in waiting room and talked at length.  He was MOST concerned.  After multiple attempts to insert the drain, he aborted, as each attempt failed.  Each puncture provided another potential entry site for infection; also, with a low platelet count (even with the transfusions), there could be fatal bleeding.  It was in ds’ best interests to halt the procedure; however, at the same time, it was NOT in his best interests, as he still had a seriously infected gall bladder.  Doctor said they would try again the following day.  We assured him that ds was in God’s hands and that God was in control; the procedure was not meant to be done just then. I asked him what needed to happen for a miracle; naturally, he thought I was daft.  In a nutshell, all of ds’ systems had to regulate and he had to be released from ICU.  Barring a miracle, I asked what needed to happen in a repeat attempt to insert the drain.  We assured him people would be praying.  He did not appear to understand any of this, his focus being solely on the gravity of the situation and his failure to rectify it.  
-- Critical.

Holy Thursday, April 17
-- We were unable to travel over this day.  (May I insert here that God’s grace and peace are incredible . . . when you can’t be where you want and need to be, He is everywhere . . . and He is sufficient . . . )  
-- At 4:45 p.m., I received a call from another doctor who was phoning with the days’ events:
-- Ds' gall bladder had drained on its own!  Yes, you read correctly - his gall bladder opened up and emptied on its own!  Praise God!  The fevers abated; BP remained normal with no soft spots; the ventilator was removed; the bilirubin had fallen incrementally from 14.6 to 10.1; he responded by squeezing the nurses’ hand on command!  All good news!  All praise to God!
-- At 5:45 p.m., the nurse reported that ds was awake, had verbally answered questions.  Said jaundice would take time to dissipate.
-- At 10:00 p.m., the nurse reported that ds was sitting up, had verbally answered questions, engaged in conversation, asked for pancakes (!), [request denied], had gulped down the cup of ice chips she brought him instead, had quickly drained two glasses of water, had asked for more (but had to wait as they didn't want to overwhelm him).

Good Friday, April 18
-- Still a bit groggy from the sedation; also from pain meds which they started for the extreme pain in the gall bladder area (from the repeated punctures) and shoulder pain (as gall bladder pain also reflects in shoulder pain).
-- Ate pancakes for breakfast!
-- Doctor said they would keep him in ICU for at least one more day for observation.
-- That afternoon, ds was transferred to a regular room.
-- Nurse reported that jaundice was visibly disappearing.
-- Side note:  When ds was first admitted to ICU, we were told he would be there at least two weeks - one for whatever infection he had (confirmed when they isolated e-coli) and one for coming out of sedation.  When they learned of the gall bladder infection, they said at least three weeks.  Ds was out in one week - admitted Friday, April 11; transferred to regular room Friday, April 18.

Easter Saturday, April 19
-- In horrific pain in gall bladder and shoulder sites.  Unable to talk or breathe without pain.  Unable to use spirometer for same reason.  (Doctor wanted him to use spirometer to deflect possibility of atalexus [lazy lung] which can bring on pneumonia).
-- Was explained to us that gall bladder infection occurred due to chemo working effectively, killing massive amounts of leukemia cells, dumping those toxins into gall bladder which overwhelmed it.

Easter Sunday, April 20
-- Pain continues.

Easter Monday, April 21 and Tuesday, April 22
-- Walking laps slowly; required to have supervision, but walking on his own steam.
-- Pain continues.

Wednesday, April 23
-- Same as above; however, when we got home from the hospital, ds had left a message for us that was very upbeat.  He had been touched in prayer by the Holy Spirit in a way he had never been touched before; a deeper level of experience in prayer than he’d ever had before.
-- Did one set of six laps.
-- Pain decreasing.

Thursday, April 24
-- Bilirubin still trending down; is at 4.  
-- Doctor says everything looking better and better.
-- Ds requested that pain meds be stopped; doctor agreed.
-- Did two sets of ten laps.
-- As day progressed, pain essentially gone.
-- First successful use of spirometer.  Goal was 1500.  Reached 2500 on first try, and with no pain.  Respiratory therapist said no longer needed.  However, ds opted to continue anyway.

Friday, April 25
-- White count improving; was .4 yesterday; .6 today.
-- Transfusions (red and platelets) as needed; one unit red today.
-- Did two sets of ten laps.
-- Pain continues to be essentially gone.
-- Reached 3000 on spirometer.
 
Saturday and Sunday, April 26-27:
-- Improvement continues.  
-- Is walking sets of 15 laps.

Monday, April 28:
-- Doctor says blood counts looking good, are incrementally improving.
-- Doctor needs to do bone marrow aspiration to prove remission.
-- Doctor wants to do spinal tap, kidney biopsy, ultra sound on gall bladder.

Tuesday, April 29:
-- Biopsy on kidneys not needed.  (This is a hang-over concern from 2008 when ds went through dialysis due to gentamiacin toxicity.  Transplant doctor wants follow-up test as a precaution.  CBC’s give no indication for concern).
-- Bone marrow aspiration in afternoon to prove remission.  Results in a couple days.
-- Ultra sound on gall bladder in the morning.
-- Results of ultra sound available in the afternoon.  Doctor says, “Looks perfect!â€

Wednesday, April 30:
-- Spinal tap in early afternoon.  Originally supposed to be for proving remission.  However, transplant doctor wanted chemo added intrathecally.  Ds had been praying over it as they were not going to use anesthesia but rather light sedation.  (Things are SO different in the adult ward as compared to peds).  The chemo was not ready this morning, so oncologist  rearranged things to accommodate anesthesia.  With this change, and with the understanding that the doctors wanted the additional chemo because the leukemia cells had presented in the spinal fluid during the previous relapse and they want to make as sure as humanly possible that they do not present in the spinal fluid and that he stays in remission for the transplant, ds agreed to the inclusion of the two chemo meds.  
-- Doctor says his blood counts seem to be boosting themselves now.  His platelets went from 27 yesterday to 80 today; hemoglobin from 7-something yesterday to 8.5 today; white blood cells “rising nicely, too.â€
-- Released from the hospital circa 4:00 p.m.  Hallelujah!

What’s next:
-- Pending appointment on Monday, May 12, with oncologist as follow-up, and to determine re-admittance date to hospital for second round of chemo.  (We have been told that it is very unlikely to have a donor match this soon).

I cannot say enough how much we appreciate your prayers, and depend on them.  God is hearing and answering.  We are especially grateful to God for His mercy and grace.  We humbly ask that you continue to especially remember ds in your prayers, as well as dh and I.

We continue to hold on to the only One Who has all power.

 

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East Coast Sue

East Coast Sue

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Wow! Praise God for His power to provide healing to your son! I will continue to hold you and your son close in prayer. May the Lord's presence in your son's life continue to amaze doctors with miracles that can only be explained by the grace of God. Glory to God in the highest!

 

And big hugs to you. I can't imagine all that you are going through. Truly, I can only hope that my faith would sustain me in such difficulty as it certainly has sustained you. I'm challenged to grow in my faith by what you have shared of your son and yourself.  Thank you for the challenge to be ever-faithful and prayerful through the good and the bad.

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