05 August 2012

101 Ways To Die

This week we attended all of rest of Caleb's pre-op meetings at the hospital.  On Tuesday, we met first with a financial adviser at the hospital.  We are very fortunate to have very good medical insurance.  We will have to pay a co-pay for every day that Caleb is in the hospital, but we will not have to come up with any insane amounts of money to pay for this procedure to happen.

Next, we went up to the Pediatric Ambulatory Unit (PAU) to meet with the doctor's who will be harvesting bone marrow from Brooklin next Tuesday (the 14th) and then immediately transfusing it into Caleb later that day.  The doctor prefaced his 90 min speech to us, by telling us that if he didn't scare us...he wasn't doing his job correctly.  He then proceeded to explain every complication that could go wrong with a bone marrow transplant in great detail.  He would pause periodically and ask us if we had any questions.  We were listening intently, and nodding appropriately...but didn't have too many questions.  Towards the end of the 90 min lecture, I think the doctor felt that he wasn't making enough of an impression on us so he started using foul language to punctuate the bad things that could happen if the transplant had complications.  Darwin finally told him that many of the things he was discussing could happen to any of us randomly anyway and that we were all going to die someday anyway.  The doctor kind of calmed down after that and wound up the meeting so we could take a 10 minute lunch break.

Before the doctor finished his speech, Brooklin had started scrolling through the LDS Music app on her phone.  She had a line from a hymn running through her head and was trying to figure out what the rest of the song was.  As soon as the doctor left, she told me the line and asked me what the song was.  She was thinking of  Hymn 128, When Faith Endures.

I will not doubt, I will not fear;
God’s love and strength are always near.
His promised gift helps me to find
An inner strength and peace of mind.
I give the Father willingly
My trust, my prayers, humility.
His Spirit guides; his love assures
That fear departs when faith endures.

It is amazing to me that she was able to connect that song with the feelings she was experiencing!  She knows God has a plan for each of us and that faith and fear cannot exist together.  The Holy Ghost spoke those words to her and she knew that regardless of whether or not anything "bad" happened, everything would be ok, because it was part of God's plan.

After our ten minute lunch, we met with the child life specialist.  I think we all enjoyed our visit with her.  She wanted to get to know us a little and then find out what kind of things would help Caleb beat the boredom of being confined to a hospital room for a month.  She told him they could decorate his room and that they could use some of his favorite things (like Star Wars and Harry Potter characters) in some of his rehabilitation activities (occupational and physical therapy).  She also said it was her job to learn to play his favorite video games if no one was there to play them with him!  Another thing she suggested was using one of the hospital's iPads to "attend" seminary via FaceTime to help him keep up with his class!  We hope they can get the WiFi in the church building up quickly!

After the meeting with the child life specialist, we took a tour of the unit where Caleb will be spending his hospital stay.  The rooms in that wing all have a double set of doors.  Going through the first door puts you in a small entry room.  It has a sink, microwave, refrigerator, and cupboards for anything we want to store.  Anyone visiting will be required to be very healthy, over 12 years old, and will need to wash their hands and arms (up to the elbows) for two solid minutes.  Anything brought for Caleb to handle must be wiped down with a Clorox wipe.  After scrubbing down, you can go through the second door into Caleb's room.  The door has a special airflow control so that none of the air from the hall can come in the room.  When you open the second door, the displaced air always flows out into the entry room...and the air from the entry room door to the hallway also flows out (into the hallway) so that the air in Caleb's room stays sterilized and at a set temperature.  He will not be allowed out of his room for the extent of his stay.  (This is because his body won't have any immunity initially...and then will be building new immunity as the stay progresses.)

When we got home that day, I found a quote online that kind of summed up my feelings for the day.

"None of us makes it through this life without problems and challenges-and sometimes tragedies and misfortunes. After all, in large part we are here to learn and grow from such events in our lives. We know that there are times when we will suffer, when we will grieve, and when we will be saddened. However, we are told, "Adam fell that men might be; and men are, that they might have joy." How might we have joy in our lives, despite all that we may face? Again from the scriptures: "Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you." --President Thomas S. Monson, "Be of Good Cheer", April 2009 General Conference

Thursday we went back for more...

This time the doctor gave us an hour speech on, as Caleb called it, "101 ways to die".  This was their way of trying to prepare us to consider that everything could go wrong and Caleb could die from any of the number of complications he described to us on Tuesday.  His goal Thursday was to make us cry...

Brooklin did cry...but not because she was worried about Caleb dying.  She told me after the meeting that she was sad for the people who had to go through all those different complications (and they were many in number and very painful sounding) and did end up passing away.  She did get a little emotional too, because the doctor was describing every detail of what the complication would do to Caleb.  We kind of felt he went a little overboard again...but he did not use any foul language at this meeting.  I'm guessing it was because we met in the hospital's chapel and the chaplain was at the meeting. ;)

The doctor was sort of proud of himself for getting one of us to tear up.  I stopped him and told him that we trusted that they would do everything they knew to take care of Caleb to the best of their ability and knowledge and that we "got it".  I told him that we believe that everyone has a period of time to be on earth, and that nothing they do or we say was going to change that amount of time...and we were ok with that.  I'm not sure if he thinks we don't really believe him that things could go bad or if we are just naively optimistic... but we are relying on our faith in Jesus Christ and Heavenly Father to get through what ever we need to get through.  They have sent us so many immediate blessings in the past two months, I have not been able to count them!  I know that whatever happens...our family will be ok, and we will have the love of God surrounding us.

After the scary meeting, we ate lunch and then waited around for an hour to meet with the dietitian.  She explained (in Asian-English) the strict diet Caleb would need to follow over the next few months.  It is very similar to what he is doing now with a few modifications...and I'm glad they will be helping him follow  it for the first month.  =)

After the dietitian, we went to visit the hospitals child psychologist.  She just chatted with Brooklin and Caleb separately and Darwin and I together to get a feel for how we were handling everything.  She said we seemed to be taking everything well, and that the visit was just a formality and get a baseline to go by if anyone needed any help with their feelings.  She was very nice.

This is pretty long now, so I will save the rest for another post.  Caleb's central line surgery is this week...as is his chemotherapy!! 

Here we go!!

1 comment:

Lauren said...

I hope the say is going well so far! I still cannot believe we ran into each other!! I will be thinking good germ free thoughts for your family.