Saturday, June 30, 2012

A Day in the Life of our Family Post-Transplant

I am sitting in the very same room that Gabriel entered the day of his transplant. This room is shadowed with much pain from the first few weeks post-transplant. This journey post-transplant, had many facets that caused us and the team to be concerned. BUT, God delivered us faithfully as his Word instructs. I had shared in my previous post that I was not certain of the days ahead, but I trust my Father in heaven to continue protecting my son. We are sitting in this room once again as my son's CMV has reactivated. We are thankful for the efficiency and knowledge of Sick Kids to ensure Gabriel receives expedient care. We are disappointed to be here so soon after discharge that are also compounded with the memories of this room. Perhaps, it is a place I need to be as means to heal and move forward beyond the horrors of this room. My son is sitting beside me laughing and playing, which is a contrast of his behavior from only two weeks ago. I am thankful for how far we have come when I think about where we started so long ago in February of 2009. My three year fighting cancer at diagnosis to relapse and fighting cancer again. He has now received a new marrow that gives him a renewed life of physical health. Mike and I have gone through many nights of fearing the death of our son to realizing that we have to trust in God's scriptures that healing is ours when we have faith to believe. Today, our journey continues with uncertainty based upon the unknown realities of this journey. Gabriel's vulnerability to minor infections can place him at a high risk. Our goal for the next six months to one year is to protect him. I wanted to take this opportunity to share what our life looks like while living at Ronald McDonald house and when we return home. I know there are many people who hear the words "discharge" and believe that all is completed in this journey. Perhaps, even the assumption that Ronald McDonald house is like a long term vacation for our family. I thought it would be helpful to provide a perspective of daily life and the future. The doctors keep advising us that everything takes time. Time...we know this word well as it also coincides with the word "waiting." These two words continue to be the theme describing this journey. Our Life... Upon discharge from the hospital means his care is transferred to home care nursing and to mom nursing (my new role). Gabriel has a nurse that comes into our apartment twice a day. In the morning she sets up IV antibiotic to ensure the lung infiltrates are gone, which was from the concern with pneumonia. This IV antibiotic will last for another 30 days. Gabriel has high blood pressure that he receives medication for in the evening, so he requires blood pressure monitoring three times a day. Once his med runs over the hour the nurse leaves and returns in the evening to connect Gabriel to his IV once again for 12 hours of IV hydration. Gabriel's eating and drinking has not normalized at this stage. Gabriel was not drinking or eating for over three weeks, so his body has to reaestablish itself again to this process. IV hydration assists with the fluids he is currently lacking. Gabriel receives numerous medications both in the morning and evening to prevent further complication of GVHD (see previous post for explanation of GVHD). He also receives preventative meds for infections that can be life threatening if he was to contract such infections. In addition to Gabriel's transferred medical care to the house we have to avoid exposure to anyone we do not know. The other difficult aspect of this journey is Gabriel cannot be indoors in large family gatherings as the infection risk is too high. So, transplant has been complete and engraftment has started, but Gabriel's body still does not recognize the new marrow as his cells. His body is still fighting to kill these new cells, so the medications he receives causes his suppression of his immune system to allow the new ones to move in and take over. This is why GVHD is present. As a result, the team cannot determine what the future holds, but is ready to respond when they have any visible signs of complication. Today is an example of the unpredictable nature of this journey as we are admitted so soon after discharge because of a virus that has began to be reactivated and if not caughht soon enou could be fatal. Gabriel's bloodwork started to show signs of reactivation of CMV (explanation in previous post), and the team wants to treat as soon as possible before complications ensue. This virus is checked every Monday because of the severity and commonality of this virus among BMT patients for those who were positive prior to transplant. Even though medical care continues even after discharge I am ecstatic about being together with the people that matter the most to me in this world. My husband and my three children can be a family together no matter what life throws at us. We are happy just to be together as long as we are together. Yesterday, we played hide and seek in the Jays room (indoor gym at Ronald McDonald house) with the lights out. I have not laughed so hard in a long time. Just my family playing silly hide and go seek. It was perfect... My New Role I never envisioned that another hat I would wear was to be a participant in my son's medical care. I was instructed to take Gabriel's blood pressure manually, which is very interesting. I have used electronic blood pressure monitors, but 8b prefers manual blood pressure as it is more accurate. I was given a crash course and I am beginning to feel confident. I have learned to provide IV hydration, to flush and heparinize Gabriel's Hickman. I woke this morning to stop his IV and to take care of his central line. Finally, if Gabriel's blood pressure is too high then I have to determine if he needs a nifedipine, which is medicine placed under his tongue that drops his blood pressure very quickly. I have to make sure Gabriel's blood pressure meets his criteria to be given this medication. At this time I am working at trying to get Gabriel used to his dad taking on some of these roles. Gabriel has wanted only me to provide this care, but we are trying to help Gabriel feel secure knowing daddy is just as good as mommy. The Future I explained above a few details as to the future about protecting Gabriel from infections and the risk of GVHD. Our criteria given by the hospital for assessing infections and visits is based upon a household being seven days without any symptoms, which includes colds. If one person is sick in a household then we cannot visit with anyone in that household. This will be the hardest part for Mike and I as it seems more stringent than our previous concerns when Gabriel had neutropenia (low counts to fight infections). This will not be forever is what encourages us. The concerns decrease the further we are from his transplant day. The milestones (the ones we celebrate) carry on starting from 2009, and this is just another path in this journey that also has completion dates that we can celebrate. One day we will have a huge celebration for our son. A celebration for a renewed life...a celebration to say thank you to everyone who have supported us....and a big party as a way to give back. We look forward to meeting people who have supported us and reconnecting with others we have not seen and spending time with you all at a wonderful day of celebration. One day soon this will be here.... Thank you for reading and following our journey.

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 son...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.

Tonight...

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. 







  

Thursday, June 7, 2012

An Update as We Enter Day +7

I have been writing my posts on facebook as I know most people log on to receive updates.  However, this blog has been one that I have kept since Gabriel was diagnosed at three years of age.  One day when Gabriel looks back on this journey I will provide him with a printed copy of this journal/blog when he is old and mature enough to conceive all that he has gone through in the words of his mom. 

Gabriel has completed his three rounds of cranial radiation, three days of morning and afternoon full-body radiation.  Gabriel did well going through this treatment, but began to feel tired at the end of his full body radiation.  He was admitted as inpatient on the final day of cranial radiation in preparation for high dose chemotherapy.  He kept his energy and appetite during the duration of high dose chemotherapy.  The day of his transplant can only be described as something so amazing, but the day itself being anticlimactic.  A bone marrow transplant is similar to receiving a blood transfusion.  The difficult part of this journey begun when his blood counts crashed and his immune system bottomed out.  The difficult part of this journey began on Day +5 when Gabriel spiked his first fever and got his first mouth sore from the high dose chemotherapy.   

We are living at Ronald McDonald House (RMH) Toronto in a beautifully renovated building.  We began our stay in one large room with two beds for our family of five, and then decreasing to just three of us at one time staying in the room.   Recently, we were transferred to an apartment located within RMH as we are considered a longterm family and having other children in the house.  We feel very blessed to be given this apartment as it feels like a home away from home.   Our girls permanently live at RMH, and are cared for by one set of grandparents who switch to another set of grandparents every seven days.  My parents and Mike’s parents have graciously made it their goal to help us get through this journey by being with our girls during the day.  Mike and I take turns with the girls in the evening as only one of us stays with Gabriel.  We are doing 24 hour shifts at the hospital with our son.  It has been difficult for me because Gabriel finds comfort with having me there and struggles when I leave.  I come more frequently as he only wants me to do his sponge baths and bandage changes for his Hickman.  We had one difficult evening when Gabriel spiked his fever as they have to take peripheral blood from his arm.  He only wants me there for this bloodwork, but I was hoping that his dad could do this without me.  However, I decided to leave and did not arrive on time as the team needed to do his peripheral blood to test for infections.  We are now at day +6, and Gabriel is having much pain and discomfort that is being controlled by pain medications. 

Day +6:  This journey bears its greatest weight when our son struggles emotionally and physically.  For 3.5 years we have come to be alerted for any signs of infections that roam throughout the community.   We adapted to rushing to the emergency department in the middle of the night in London at the first sign of a fever to then be admitted as inpatients.  However, this new phase feels more difficult than I envisioned.  The team of Doctors who follow BMT patients advised us that statistically Day +5 is when mouth and throat pain may start (similar to canker sores throughout your entire mouth and throat), diarrhea, nausea, and possibly fevers.  I sit beside my son hugging and touching his head attempting to understand how I can help him.  A mother's pain is the greatest when your own child suffers, and is multiplied when you cannot do anything to minimize this pain.  My son has started a continuous morphine infusion to help with this pain, which also results in monitoring his oxygen saturation levels as this is a serious narcotic.  Gabriel is also receiving around the clock IV antibiotics to prevent and/or fight what is causing his fever the past two days.  He is also eating minimally and is now receiving TPN, which is IV nutrition.  We are reassured by the team that this is a “text book” example of a BMT post –transplant patient.  I am still challenging myself to feel “reassured” by this description of my son. 

The only place I go when I am feeling emotional pain is to trust the one whom gives peace beyond comprehension.  I continue to pray and seek Scriptural Words of Truth written for us all to read.  The bible has taught me much these past few months, and I have been challenged to believe in this truth.  It is not just a book you read, but a book that carves your entire destination.  I admit that I have not always abided by the word of God, and I am still learning about myself and God.

 I trust and believe that God continues to protect and heal my son, as I know He loves him even more than I.  I may weep as any mom would when her son suffers, but they are not tears of distrust.  These tears I shed are lifted up to my father in heave to ease my pain and burden.  I may not understand and know the days beyond today, but I lift my mind and heart to you oh Lord for this burden is heavy.  I wish I could explain why this journey or why this suffering.  I cannot, but I do know that God will be here and He will be glorified.  God’s glory comes when ones journey is used for a greater good to serve for God’s purpose.  I stand firm and believe that my son will be healed and have an amazing testimony.  I believe in this for my son.

God has provided me with peace throughout this journey.  But, I cannot deny that this journey is hard and emotional.  It is the unpredictability that catches me and reminds me to lay my sorrow down so that my Father in Heaven can carry it for me.  So I continue on this journey with the reminder that I must continue to seek God through prayer and in His word.   

I waited patiently for God to help me; then He listened and heard my cry. He lifted me out of the pit of despair, out from the bog and the mire, and set my feet on a hard, firm path and steadied me as I walked along. He has given me a new song to sing, of praises to our God. Now many will hear of the glorious things He did for me, and stand in awe before the Lord, and put their trust in Him.

Psalm 40:1-3

This journey has brought many wonderful people into our life.  God has shown us much during this journey that I am so grateful for experiencing.  I am thankful to everyone who continues to encourage and inspire us through your messages of support.  No person should do this journey in isolation.  We came to realize this once our son relapsed because prior to these past six months we tried isolation.  Support from friends and family has been a wonderful blessing in our lives.