Monday, June 25, 2012

Day +24: In Life there is Valleys and Mountains

Tonight, as I sit to write this post my fingers seem to rest on the keys of my computer seemingly  replicating most of my posts over these past few months.  I find that my words do not come as easy.  Perhaps, exhaustion and/or contemplating the exact words has come to be a daunting task.

The past 30 days have provided many opportunities for reflection over these past 3.5 years.  I have reflected upon what I have learned, where I need to grow, and who I want to be as a person to my children, husband, family and friends.  My reflection time often triggers memories of events causing me to think about what I have learned and blessings in each memory so that I don't feel the weight of this world.

 It was during a time of  reflection a poignant memory shockingly surfaced.  This memory had images of me visiting the outpatient clinic at the London Pediatric Medical Day Unit, which I grew accustomed to with my three children.  However, the image that came was very different compared to previous memories.  I had been collecting bravery beads for my son for a long time.  On this particular day I went to gather beads that reflected the procedures he has received over the past week, but what was different was it was the first day I noticed the bead for a bone marrow transplant.  I remember looking at that bead, and feeling many emotions and experiencing many thoughts.  This bead stood out more that day than any other day.  I am sure most families going through this journey fear relapse.  They fear having to place that bead upon their child's necklace marking this particular story in their journey.  I am not and was not unlike any other parent who feared relapse and a bone marrow transplant in this journey.  I believe it was that day I stopped collecting my son's beads.  I never thought that this day would become a reality for my family.

 Fear has a lot of power over ones choices and path in which they follow.  I am not suggesting fear created this path in this journey, but it can make ones life very difficult.  You lose sight on blessings, and only fear the future.  You limit your life and those around you when fear is your leader.  I can honestly say that fighting "the spirit of fear" as a believer in Jesus Christ in this journey has been and continues to be the hardest fight.  The bible states “For God has not given us a spirit of fear, but of power and of love and of a sound mind.”  A spirit of fearfulness and timidity does not come from God. (2 Timothy 1:7).  This spirit of fear has overcome me at times, and it is during that time I have needed to trust in and love God completely or this fear would have crippled me.  I could not allow this to occur for my family and for myself.  God has called me to trust, and not to lean on my own understanding.  I need to be faithful to God's commandments and will for my life.  But, this is a constant and sometimes daily journey for me.  I am often crying on my knees during my most weakest times when I have received concerning news from the hospital.  My relationship has grown stronger and closer to God because He has shown me at my most darkest hour His love.  He is the one that has lifted me up when I had no more to give.  God gives me the strength to endure and move forward in this journey with thankfulness in my heart.  I have seen God's hands on many aspects of this journey.  It is not the journey that I would have chosen or the process in which I would have chosen it to be, but God has been in this journey holding us in His hands.  I have seen many prayers answered and felt God's presence through the Holy Spirit.

My son engrafted on Day +18, and was immediately given a step down room that day.  I never expected Gabriel to engraft so quickly.  In addition, we were advised that platelet engraftment can sometimes take more than 30 days to engraft.  My son's platelets engrafted around Day +23.  Gabriel was fighting three infections, and one being pneumonia without an immune system.  He was protected and delivered from these infections.  One week from being in isolation he was given a pass to leave the hospital for an outing to Ronald McDonald house two days in a row.  I am thankful for these blessings.  God is my light amidst this storm.

The Next Phase

 I don't know what the next phase of this journey will look like in particular for my son.  I am aware of the risks over the next 100 days, six months, one year and two years.  The time we are focusing on at the present is the 100 days.  Gabriel prior to engraftment had a full body rash and spiked a fever that lasted for more than 8 days.  The fever and the rash was suggesting three possibilities defined either as engraftment syndrome or pre-engraftment or Graft versus Host Disease.  The only way they could diagnose this rash/fever was once he engrafted.  On Day +18, the head doctor came to assess Gabriel and advised us that Gabriel has Graft versus Host Disease (GVHD).   When Gabriel's body began to fight the new donor cells, it appeared as a rash.  It is coined Graft versus Leukemia when it comes in the form of a body rash and stays only as a body rash.  A little bit of this disease causes the body to fight and destroy any remaining cancer, which is why it is defined as Graft versus Leukemia.  Research is amazing and powerful.  However, too much of GVHD is when it goes beyond a rash and starts to go after such organs as his liver, gut, etc.. We don't want this to happen, and so Gabriel is receiving two medications to suppress his immune system so his new cells can overtake his own, but this also creates a risk to triggering infections as his immune system is suppressed.  As a result, it is a balancing act of suppressing his immune system with steroids to prevent further GVHD, while not staying on steroids too long so that serious infections are not triggered, such as CMV.  Gabriel is positive for CMV.  Statistically, most children undergoing transplant are CMV positive as we are usually exposed to this virus as a child. A healthy immune system can fight this virus.  Suppressed immune systems cannot fight this virus without assistance and can become serious.  (CMV is a member of the herpes virus family that includes chicken pox, cold sores, and infectious mononucleosis (mono).)

 I am constantly reminded that this journey continues to have both valleys and hills.  I don't know what the next few weeks will look like, but I do know that the only way I can walk through this journey to the end is with God as the leader of my life.


Just 30 minutes prior to starting to write this post (that has taken me forever to be able to log on to blogger) I received word from my husband (his turn at the hospital) that our son spiked a fever.  My fear surfaced and my mind went straight to the worse case scenario.  The Holy Spirit quickly interrupted those thoughts with trust in the Lord with all your strength, and "calleth those things that be not, as though they were."  My son is healed!  I will continue to proclaim this and trust in God for my son's healing.  Please continue to proclaim this alongside me that my son is healed. 


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