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. 

A New Phase has Begun...

In the beginning of this journey ...I feared, I cried, I laughed, and now I wait with anticipation, enduring love, and faith that God will forever heal my son through medical means.  This journey has been long.  We started on February 10th, 2009 and was scheduled to end on June 2, 2012. But, one day before what should have been the end of treatment he will begin a new phase.  On June 1st, 2012, Gabriel will begin Day 0 of his Bone Marrow Transplant (BMT). I am sitting at day (minus)-7 writing a post and it seems the words are not flowing easy.  My room at Ronald McDonald House Toronto is dark and quiet as my girls are sleeping soundly in the background.  My hands type slowly and cautiously so not to wake them as my fingers tap the keys on the computer. This room feels strange and incomplete.  Two of my family members are missing.  I miss my son.  I miss my daughters.  I miss my husband.  I miss that my family cannot be whole at this time.   My heart aches and yearns for the moments I took for granted in the past.  The times where I wished I could be sleeping longer, but woke to the sounds of children fighting and/or laughter.  Now, I want my children to wake me with their "normal" sibling conflicts and early morning chatter.  I want to experience the simplicity of family.  I want monotonous family routines that involve taking my kids to school, swimming lessons, soccer, and ballet.  I want this choice.  Yet, in this moment.... I do not!  I wake each morning either in a hospital room to medical staff preparing me for the day, or to getting my daughters ready so that I can say goodbye to them.  I have...but one choice... to rise with peace, happiness and confidence that one day I will re-experience the family life I now envision in the future.  I have a choice to how I respond in this journey.  I feel sorrow, and I fear some days.  However, this is not the foundation of my soul.  The greatest choice I will continue to strive for is to look to God for strength and peace to know that one day my family will be joined together to experience the rituals that I once took for granted.  Cancer will not have the last say in my family.  Mike, I and my three children will rise against this disease so that we will one day have each other to hold close forever.

If I can offer to all that read this post...don't wait to hold your children to tell them everyday the positive characteristics each have.  This life on earth seeks superficial means to find happiness.  This happiness is fleeting.  Look to those you love and rejoice in people.  Rejoice in God.  There will always be someone that hurts you and you will want to hold a grudge.  The only person this hurts the most is yourself.  Free yourself of all pain and seek what is truly happiness.  My happiness is found in my heavenly Father, my family, and my friends.  This journey has realigned and reinforced what is important for me, but I would not wish this journey on anyone.  I just want others to take what I have learned without having to experience this journey.  Slow down...love much, laugh often, and rejoice in everything that is good!

Update on Gabriel's Progress

Gabriel began treatment on Tuesday, May 22 with his first cranial radiation or boost as the doctors like to call this procedure.  Gabriel received three treatments of cranial radiation Tuesday, Wednesday, and Thursday.  After Gabriel's first treatment of radiation he complained of an excruciating headache.  My heart cried out to God to take this pain away from him for the remainder of his treatment.  Gabriel did not have anymore headaches. I am thankful to God for answering all of our prayers over Gabriel's headache.  I shared with Gabriel that mommy was praying for him in the shower.  The next day just prior to his radiation Gabriel asked me to pray again so that he did not get another headache.  Gabriel realized in that moment that God does answer prayers. 

On Thursday, Gabriel was admitted as an inpatient at 3:00 p.m. to begin fluids for high dose chemotherapy.  Today, May 25th,  Gabriel started high dose chemo.  He is expected to become sick with this chemotherapy, but I am praying that Gabriel does not suffer with any nausea or mouth sores.   Gabriel will continue receiving high dose chemo until Monday. 

Tuesday, May 29th, Wednesday, May 30th, and Thursday, May 31st, Gabriel will receive total body radiation (TBI) consisting of a morning and afternoon treatment on all three of those days.  This will be a hard few days for Mike and I as we watch our son undergo this intensive radiation.   Mike and I struggled with the cranial radiation as we both had to leave our son behind to receive this treatment.  Gabriel held his "radiation buddy" a lamb, and his blanket.  He was strapped down with a seat belt, and a fitted mask for exact treatment.  This mask was clasped down to the bed so he could not move. I Hated this... Gabriel did not experience any pain during treatment, and was able to watch Lightening McQueen.  It is the parents who struggle mostly with many of the details as we know too much.  When Gabriel asks questions we explain to him in ways that he will understand.  Gabriel feels empowered knowing information about his treatment.  He asks questions, and we answer.  The nurses always think it is amazing how much our son knows about procedures and treatment.  He is actually helping the nurses out when he is allowed.

On June 1st, 2012, Gabriel will receive his new bone marrow from the unrelated donor.  Our donor is a male and is a 10/10 match for HLA typing.  It will be this day that Gabriel will go into complete isolation.  Gabriel will not be allowed to see his sisters from anywhere from 2-4 weeks or more.  Mike, I and my sister-in-law Carolyn (our alternate) are the only people our son will be allowed to see during this time. 

Thankful

1. I am thankful for our Heavenly Father whom answers prayers
2. Thankful to all of our family and friends who have supported us.
3. Thankful for making new friends through this journey.
4. Thankful for Jacob's Story and all that you have done for us.
5. Thankful for Trevor, Jen and Geoff (my in-laws) who have completed two fundraisers
in Alberta for my family.
6. Thankful for my parents and parent-in-laws for helping with our girls while at RMH.
7. Thankful for Dave and Carolyn for supporting us through being available to help us and for the slide show.
8.Thankful to Todd and Tina for providing some fun for our children before this journey started and so Mike and I could escape for a day and evening together.
9. Thankful to all those who have donated and supported us financially.  We are excited to say that both Mike and I will be able to stay with our son as he is in Toronto. You have made this happen for us.  Thank you!  You have given us an amazing gift knowing that both Mike and I can take time off from work to be here with Gabriel.
10. Thankful to all those who continued to make us meals.
11. Thankful to everyone who sends us words of encouragement on my blog and/or facebook.

Prayers

1. Please continue to pray that Gabriel does not get Graft versus Host Disease
2. Gabriel engrafts and quickly
3. Protection over him from infections
4. No future complications from his transplant
5. No future cancers
6. Protection from infections for Mike, I, our girls and grandparents. 
7. That one day Gabriel will share his testimony and will inspire others in the future.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

John 14:27

As I Continue to Walk...

Since my last post Mike and I have been attending meetings with our Oncologist from London, the transplant team and the Urologist from Sick kids.  Our meetings with Sick Kids have been via video conferencing, which seems surreal when discussing your child's risk and benefits of his bone marrow transplant.  We received a vast amount of information that left Mike and I feeling sad, frustrated and withdrawn.  This information we received was a discussion of his risks immediately after his transplant, the 100 days post-transplant, and risks pertaining to the span of his lifetime.  However, we know that the best prognosis for our son's life is to receive a bone marrow transplant.  My son has been matched with an unrelated bone marrow donor from the registry.  His match is a 10/10 match for HLA typing and is also a male.  The only match this donor does not have is the same blood type as Gabriel.  The donor's blood type is A+, and my son's blood type is O+.  The optimal donor is one that has all of the above (same gender, 10/10 match, and blood type).  However, blood type is one of the lower concerns on their list.  

I have many thoughts and emotions racing through my mind that it seems difficult to find words that convey the impact of these meetings on this computer screen.  I am going to try my best to provide an update with some internal thoughts/emotions within this post.  It seems my words as I reread and rewrite are resulting in an injustice to the reality of this journey for my son, my daughters, my husband and myself.

I only focus only on what today brings me.  I don't focus on yesterday or tomorrow.  There is no happiness or positivity gained when your mind constantly plays out the sequencing of this journey.  There are days when I have to regain composure in the silence of my own room, but once revitalized I look to what blessings this day will provide.  In these positive moments in our family's life I am reminded that it is not my strength, but that of God's grace and assurance of His protection and peace.  I would be confessing dishonesty if I said that I was not scared.  I am scared when my mind drifts to the near and far future, but I am quick to pray to God to allign my thoughts with trusting God's hands upon this journey.  I want this chapter of my son's life to come to a close so that he can experience a positive and normal life.  I believe one day that I will see my son as a grown man walking and sharing his amazing testimony.  My son amazes me with the person he has come to be thus far in his young years.  His strength, courage, and passion is beyond his years.  I never thought I would aspire to have traits of a child.  The attributes my son carries with him bears witness to God's enduring love.  

We continue to walk...together as a family...day by day...exemplifying characteristics of one that is positive, faithful, and happy for the blessed moments we are given as a family.

We were advised on three tentative dates for our son's bone marrow transplant.  The donor has three options for dates.  The first date is May 30/31, and the other two dates fall within one week of each other.  The first date is the time frame in which Sick Kids and London have organized preparatory tests and screening prior to Gabriel's transplant.  Gabriel's tests include an ECG and pulmonary function, dental to determine risk for infection, renal scan, and finally, the one my son will dread and fear the most is the removal of his port-a-cathe to be replaced with a hickman.  A port-a-cathe only has one access point where Gabriel can only receive medications or transfusions in isolation, which is not ideal for a bone marrow transplant.  A hickman allows a patient to receive a transfusion and antibiotics simultaneously, which he will require as his bone marrow begins production of its new blood products. If you are asking yourself this question "Will Gabriel now be considered A+ blood type now that he has received a donor's marrow?" The answer is yes.  My son will no longer be O+, but A+.  We are grateful beyond words for our donor, and hope in two years we can meet him. 

Once the date is confirmed for Gabriel's transplant we are to proceed to Sick Kids two weeks prior to the transplant.  Our son will receive high-dose chemo, cranial and full body radiation to kill his own marrow and any remaining cancer prior to his transplant.

I mentioned above that Mike and I participated in a video conference with an Urologist, which was by our request.  We discovered during our research that there is relatively new research that take testicular tissue and freezes it for future use by the patient if he decides at that time. However, this procedure is only an experimental procedure for young boys as there are no proven fertility methods for prepubescent boys.  There have been no live births thus far.  It is expected that this tissue will contain stem cells that can later produce mature sperm.  We have investigated this option for Gabriel as it is 99.9% that he will become infertile as a result of radiation.  There are too many times when children going through cancer treatment have so many life's normal activities and future prospects taken away.  We wanted to provide our son with something that he can one day make a decision about for himself.  I hope one day this will become possible for my son.  We believe...just as our Urologist stated it is our "pie in the sky" to believe that this procedure will one day allow Gabriel and so many other boys a chance to choose.  We believe at the rate of technological changes that in 20 years Gabriel may have a viable options to have his own children.  Gabriel will be the first child in all of Canada to have completed this procedure.  There are doctors conducting this procedure and freezing of testicular tissue in Germany and only a select few hospitals in the States. The procedure will be occurring at the same time as our son's surgery for his hickman, so he will only have to undergo general anesthetic once.  The surgery involves making a small incision and then using a small needled to remove this tissue.  Gabriel will only need one suture to close this incision.  Our main concern was the risk for infection so close to his bone marrow transplant.  There is about 1% risk for infection.  We anticipate this surgery will be completed in 1.5 weeks from today, which is enough time between his transplant.

Research is powerful tool that we have come to know much about since our journey has started.  Most information and/or concerns have come from staying informed through reading and asking many questions.  We have come to learn a lot about the pros and cons of the medical care system.

As we wait for Gabriel's date to approach he spends a lot of time at the London hospital with myself, his sisters, and his dad as an outpatient and/or inpatient.  Gabriel must continue receiving chemotherapy until his transplant as it poses a great risk the return of his cancer when waiting without any treatment.  It is hard knowing that Gabriel continues to receive chemo for the purpose of waiting and knowing that if he stops that cancer could return. 

We continue to walk...with our children...as a family...holding each other up with fond memories, fun moments at home and in the hospital.  

I was recently asked if I was growing weary.  I believe there are days as a mom to a child fighting cancer for over three years and to two daughters that I feel tired and exhausted.  The emotional aspect of this journey is very draining on a parent because we know so much about cancer and the procedures.  These emotions are real for both Mike and I, and the fear at times becomes the most pronounced emotion.  There are days when Mike and I just crash on the couch sitting in silence long after our children are sleeping in their beds.  At times we do this together and other times we are in separate locations (hospital and Ronald McDonald house).  The days at home together we rehearse the days to come and summarize what we have gone through.  It takes our entire being some days to look at each other and say...lets talk about something fun.  Lets do something fun.   A parental experience of walking with your child is the aspect of this journey that is not shared enough.  Most parents walking this journey have many moments when fear of losing your child to cancer becomes heart wrenching.  I admit that the main emotion that encompasses this journey is this fear of loss.  The stories you hear and the families you meet, and the children who have lost their lives to cancer have been a part of our story.  We have met families who have suffered through loss.  How can a parent not fear this story for your own child?  It is all around us as we walk the halls of the Oncology wing at the hospital.  We see pictures of children who have lost their battle.  Some we know and some we do not.  We talk to parents at Camp Trillium, and we read.  We know what cancer does to children, their siblings and their parents.  Mike and I would do anything to protect our children.  We have learned twice that we cannot protect our children from some things in this world.  Our son facing cancer twice has reminded me that I could not stop this pain from entering my son's body.  This journey is hard, but from my previous letter it is a journey I have come to learn how precious life is.  There are blessings in each day.  My strength is not my own, but through God's amazing grace and mercy on my son's life, my daughter's lives, my husband's life and my life.  I trust in Him entirely.

I continue to walk..with peace, love, and faith.

"Don't be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Philippians 4:4-6

Thank you

I want to continue to thank you everyone who has provided our family with delicious food, as it has been incredibly helpful after a long day or week at the hospital.  It is wonderful knowing that it is one less job that I have to attend to.

Thank you to Jacob's Story for organizing and leading the fundraisers in our community.  Thank you for organizing the barbecue at the post office, and the upcoming dance on May 26th at the soccer club.  Thank you to Bill and Jessica for looking for great opportunities for some fun for our family (TFC soccer tickets).  It has been hard with our schedules to make these activities work based upon our time in the hospital, but we would like you to know how grateful we are to you both for your support and time to find everlasting memories for our family.

Thank you to our families for being here for us when we need you.  Everyone on the Bender and Smith side has shown us much love and willingness to stop things to be here for us.  We love you all!

Thank you to Kyra.. my dear best friend who has taken the lead as my family's spokesperson.  You truly are more then my best friend, but my sister too!  I am thankful for all that you have done to help and representing us so well.

Thank you to 104.7 Heart Fm for pledging to support Gabriel's goal through the upcoming Navy Vets charity hockey game.

Thank you to everyone who has helped us financially with a donation.  Your financial gifts will be a tremendous help when we are at Sick Kids, as both Mike and I will not be working.  This help will ease the burden so that we can continue to focus on our son and our daughters through this difficult time.

I wish I could personally thank everyone for all that you have done for our family.  Please know that I am sending a virtual hug and a great big thank you to everyone that has supported us.  I hope one day that I will be able to personally give back by thanking you all in some way.  At this time, I hope that a thank you in my post will help to know how much we appreciate your giving.

Please Pray for the Following:

1.  Protection over Gabriel's body so there is no long term complications radiation and high-dose chemo.

2.  Gabriel does not get Host versus Graft disease.  To read more about this disease please click on the following link to understand more specifics about this disease.  http://www.llscanada.org/diseaseinformation/managingyourcancer/treatmentnextsteps/typesoftreatment/stemcelltransplant/graftvshostdisease/

3.  Gabriel's new marrow engrafts and his blood counts climb quickly to decrease the risk for infections.

4.  No future cancers

5.  Does not get any infections in his most critical days.

6.  Our daughters and their grandparents do not contract any infections while they are caring for our daughters at Ronald McDonald house.

7.  Mike and I remain infection free.

8.  No long term cognitive or physical development issues.

9.  Peace and strength for Mike and I as we continue on this long journey.

A Letter to Leukemia

Dear: Leukemia,

I am not sure how to begin this letter, but to say that you have given me more pain in my life than I could have ever fathomed.  I have felt much pain, but you sure have outdone yourself.  I do not like to use the word hate, but I have often felt this way about you.   I fear you and want you to go away FOREVER.  You make my son undergo toxic chemicals and radiation in hopes that you will never return, but I still fear.  I dislike that you have caused me to constantly over-analyze my parenting so that my three children grow up to feel some normalcy in their lives and to be happy in spite of the separation you cause our family.  I hate that you don’t care about the sickness you cause my son with the medicines he takes, the painful needles, transfusions, the constant concern about washing hands, the risks from contracting infections, and not being able to play whenever he wants like a little boy. You have reduced most of my son’s life to fighting cancer.  Please go away and stay away.  Please don’t ravage my son’s body any longer now or in the future.   Please go away so that my family can be normal.

Shockingly, I also want to say thank you to you, leukemia.  I would have wanted this lesson to be reinforced in another way, but this is my journey.  I do not thank you for what you have done to my son, but what you have taught and reinforced for me.  You have taught me about what really matters in this world.   You have helped me learn to love like I have never loved before.  You have reinforced what God has been teaching me about appreciating the little things in life, to laugh at the mistakes I make, to love all people no matter their frailties as we are all imperfect.  You have reminded me to not grumble and complain about things in this world that don’t matter (food, wasted time, bad drivers, etc.…) You have created opportunities to make new friends and to grow closer to people in my life.  You have opened the opportunities to share, to inspire and to find a passion for my future.  I will fight a good fight to help those that are in despair from what you do to families. You cannot and will not cripple me.  You make me cry…a lot, but my tears are not from weakness.  You make me sad, but this sadness is not my leader.  My leader is my Heavenly Father whom brings me comfort and peace.  You have blindsided me, but you will not win.

Sincerely,

Tina Smith

 (A mom to the most amazing son)

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Relentless

Do you ever have a time where life’s negativities seem relentless?  That you want to wake to a newness and completeness that feels better than the days leading up today?  I do!  Some days are stronger and other days I am reminded that I can bear all things with God by my side.  However, my human side that comes from pain and suffering sometimes does burst to the forefront of my thoughts.  Sometimes I have those days that I wake to reminders that all that made me feel “normal” has been taken.  I know that these emotionally disturbances will awake in my spirit during unpredictable moments in this journey. Relentless is a word that I often describe this journey, which often awakes deeper pains from my past where suffering once was a story of my life long ago.  An ongoing journey within my soul to ask God of my destination and how can I use all this suffering to help those around me.  I want the feeling of relentless to dissipate, so it no longer symbolizes my journey.  There are many good days where I feel God’s hand upon my life and the peace that flows.  I see God’s hand throughout many moments in my life from the people He has brought to my life to the only remarkable events in my life that can only be explained as the almighty power of God. 

Many people have asked about this journey with our son and what it looks like for our family.  As I have sit here trying to create an image for those reading my post that allow some insight into everyday life…it is hard.  However, I am going to try to provide insight into our days, weeks, and months and why I feel the word Relentless stands out for me.

A Glimpse in the Present and Future

My son, since 2009, has been fighting cancer.  My son has been fighting cancer over half of his life.  His mom and dad have been fighting for normalcy and health for all three of our children for almost 3.5 years.  Our daughters have spent more of their life behind walls of a hospital and interacting with hospital staff.  My children are at their most comfort in a hospital, but once we are in the community they become insecure and shy.  At a park, my children struggle leaving my side because this is not a place they we have consistently gone for fear of contracting infections that would put Gabriel at risk.  My children have been forced to become older in years because of this journey.  I do see so many moments where my children are children.  However, there are many moments that my children seem older than they are.  Simone to hugging both of her siblings saying “it is okay…don’t be scared.”  My daughter is four-years old.  She has so much strength and caring that I feel two competing emotions of both sadness and proudness.  Yasmine, at 2.5, asks us many times “He okay…mommy?”  I feel sad because I cannot tell them and don’t want to tell them the implications of cancer.  Gabriel who is brave, but also so scared.  My son has anxiety that many times regresses to the little boy I knew at 3 when he was diagnosed.    How do I expect any more than this when for more then half his life he has been fighting cancer?  Being a parent in this journey has you question so many different aspects on what is right for the present and the implications for the future.   I don’t know if I am always making the right choices, but I pray and seek God to help me direct this path for my children.

As our journey continues our life has gone back to isolation most days.  We don’t leave the house if Gabriel is neutropenic as the risks are too great.  This change also involves isolation for my girls too.  I try to do the best I can to find activities for them to do at home and outside.  The outdoors has been a great place for our family as it decreases risk for infections.  Mike and I spend a lot of time hand washing when we go into the community.  We still have to attend to errands in the community, so we are very aware of who is around us that may be sick.  To always be so conscious becomes very tiresome.  However, we would do anything to keep our son safe.

We spend a lot of time at the hospital where my son receives chemo in many ways.  He receives chemo in his port-a-cathe, leg injections and orally.  I never imagined having to give my child an option of what he would prefer as a “poke” (needle).  A conversation may look like this “Sweetheart, do you want to have a finger poke or a poke in your port-a-cathe today?”  Did I ever fathom that one of the questions to encourage age appropriate decisions would be concerning a place for a needle?  I don’t believe that this procedure is a decision that any child should ever after to make.  However, in terms of allowing kids to feel a sense of control when so much has been taken is important.  Providing Gabriel this option allows for him to feel a little bit of power over his life. Most days he does not have a choice has he has to receive chemo through his port, but on days where it is to check his counts...he gets to choose.

This life is also very unpredictable.  We could be having a great day at home.  Gabriel smiling and running around, but instantly things can change.  Gabriel has spiked a fever when there have been no symptoms.  We have to rush to emergency where he is placed in a isolation room away from all other infections that run rampant in emerge.  As a result, we are admitted as inpatients for a minimum of 4 days.  We have spent a lot of time as inpatients during this journey.  Our plans have changed quickly many times since the start of this journey.  Our family has often felt a sense of disappointment when planned family and friend events have to be cancelled.   Our plans for scheduling normal family activities are always based around Gabriel’s immune system.   Our family has gone through scary infections since Gabriel’s diagnosis from the swine flu to two bouts of pneumonia, and many other unexplained infections that resulted in fevers.  God has protected Gabriel throughout all of these serious infections.  There are nights when Gabriel has no neutrophils that we are up checking for fevers.  As he has become older he has been able to articulate how he is feeling, which is helpful for us.  Mike and I continue to have many sleepless nights to taking care of health and emotional needs of our children.

As for the near and long-term future of this journey…my son has to undergo full body radiation that will kill all remaining cancer.  In addition, he will receive such a high dose of chemo that it will kill his own bone marrow so that he can then undergo a transplant.  As I sit writing this portion of my post I am listening to a song called “aftermath” by Hillsong.  I am trying to listen to the words so that as fear and deep pain from knowing all this information I do not feel weak.   I am trying to remember, “God is with me to light the way.”  I cry as I think of the near future and what my son has to endure.  I have not told him yet as his anxiety would overtake him with the unknown.   There are many risks to a transplant from future diseases and to being life threatening.  Once his transplant is complete Gabriel is at a very high risk of contracting infections as his new bone marrow begins to establish itself.  Gabriel will be in complete isolation.  He will not be able to see his sisters for at least 4-6 weeks.  The most concerning period of time is the first 100 days post-transplant.  Mike and I are the only ones that can go to be with him.  As a result, we will only be able to go back and forth from the hospital to Ronald McDonald house for 4-6 weeks.  I don't know how to tell my children that we cannot be together as a family until Gabriel recovers.  Skype will work for a short period of time, but sometimes it may be too difficult to not have my children to reach out and hug each other. 

Until the time of transplant Gabriel continues to receive chemotherapy at very high dosages until the required testing on the donors is complete.  We have not received a date for transplant, but know it will be happening before the summer.  We are currently planning for a two-month stay in Toronto.  I no longer work as I have taken a leave of absence from work.  My husband is working to get prepared for taking 4 weeks off to be with us in Toronto.  This change will be a financial burden, but we finding strength in many ways…especially through God.

Thank you for reading my post today!  I hope that you are reminded everyday of the blessings in your life.  There is always much to feel blessed about.  I see this in my children and those around me. 

Thank you to everyone who has blessed my family through messages, financially, food, and providing an ear to listen.

In my Greatest Fear Intercessory Prayer has Helped

 There is a constant reminder to stay close to Jesus as He is the only one that will carry me through this storm.  There are times I grow weak and put my time with our Heavenly Father on the shelf.  I am reminded how this can only foster spiritual weakness.  As a result, I become fearful, worried and alone.  My fear is decreased when I don’t foster this relationship with God.   This scare of watching my son hooked to heart monitors and oxygen for two days had me fearing the worse at 3 a.m.  I realized how alone I felt because I did not put my fear in the right place.  I have lived two opposing lives where I have trusted God and have not trusted God.   In the past, I must say with all honesty that living without God was the most difficult part of my life.  As I face the scariest journey that no mother and no parent should ever have to face I am left with the same decision.  Do I put all my faith and trust in God so that my burden is eased?  I have free-will to choose.  There are consequences of one choice and future blessings of another choice.  However, in this life and this journey I grow weary and tired.  It is then that I stumble.  I truly want to live a faith-filled life that glorifies my maker, my deliverer, and my healer.   I question this journey to no end…my sister-in-law Carolyn put it so clearly in how I feel “when will this crap end?”  I have often thought those same words, especially almost 3.5 years into this journey with my son, and many other times in my life.  I know God will use my life and this journey as means to glorify Him.  However, it is during this journey that I have to force myself to remember that this too is only for a season.  I think often of how Job in the bible suffered so greatly.  We know at the end of Job was blessed, but he did not do this for the blessings because this was unknown to him at the time.  He did it because he wanted to be obedient to God.  Sometimes this is the hardest part in life.  I don’t know what God has for my life.  Do I want to suffer?  I do not.  I am sure Job did not want to suffer, and lose all that he had.  Job continued to love and honour God through all of his suffering.  I hope that I can exemplify the same faithfulness that Job did in the scriptures.

I shared of my weakness above.   I know this journey will cause me to feel sadness and fear.  It is those times I have come to trust intercessory prayer.  My dad shared with me that a mother’s greatest protection and love for their child sometimes makes us struggle with prayer.  My dad reminded me that I do need to continue to lean on people during times that it is hard for me to pray.

1 Timothy 2:1  
First of all, then, I urge that supplications, prayers, intercessions, and thanksgivings be made for all people,

Matthew 18:19-20
Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven. For where two or three are gathered in my name, there am I among them.”

Romans 8:26
Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

I continue to seek, ask for support and thank all that have continued to follow our journey.  It humbles me so much knowing you are all there for us even if it is through your posts.  They help lift my spirit.

Updates:

Gabriel was recently admitted to the hospital with pneumonia.  His heart rate was extremely high as a result of him struggling to breath that was complicated by three facets.  Asthma, pneumonia and low hemoglobin.  All three having life threatening possibilities.  Through all your prayers Gabriel has quickly recovered only after two days.  The doctors are extremely happy with his progression.  I shared in the beginning how fearful I felt at 3 a.m.  During this time, it was not nurses running into see my son, but two doctors.  One Doctor does not typically come to see patients in the middle of the night, but to have two arrive and not nurses scared me beyond anything I have experienced thus far.  I have had a few scares, but not to this extent.  At 3 a.m., I realized that I just had a small glimpse of what potentially could occur post-transplant.  I need to be prepared both spiritually, mentally, and physically.   My son is doing great now!  He actually completed a whole Lego set of a rocket, space station and multiple other pieces in this set.  Thank you Auntie Jen for buying this for him!  He loves Lego, and to see him maintain focus for hours to complete this set amazed his dad and I.  We are so proud of him.  Thank you Uncle Geoff for coming to visit and help and thank you to Aunt Jen taking me on some retail therapy and spoiling my kids. You made them all so happy.

As for treatment, Gabriel continues on his protocol today because his neutrophils came back so quickly.  He completed 8 hours of hydration to equip his body for a one hour chemo treatment today.  He returns on Tuesday for an LP and more chemotherapy. 

The BIGGEST news at this point is the finding of preliminary donor matches.  Sick Kids has informed our Oncologist they have found a few matches (uncertain of numbers), but we will have more information  in two weeks about these donors.  They have to continue with further testing to determine the best and closest ten out of ten match for Gabriel.  There are many variables to pick a donor, but they have found preliminary donors.  This is great news.  I, of course, feel very scared about this part of treatment as it involves the unknown for Gabriel. There is much to this process that I will go into further detail in my next post.   This treatment also entails much planning for my family as I reconfigure our lives for an average of two months or more in Toronto.  Gabriel will be in isolation for 4-6 weeks, which means he cannot see his sisters.  He will only be able to see his dad and I.  This change will be a very difficult process, and at this point we are in the planning stages of making all of this work for our family.  The biggest portion of planning is reducing infection risks to our girls while staying at Ronald McDonald house when we come to visit and keeping Gabriel safe.  Mike will be taking time off from work, and anticipate this will be one month or more if we can financially afford for him to stay with us.  In addition, I just took a leave of absence from work to begin planning and being their for my children 100%.  It was a difficult decision as I love helping my clients, but after realizing that I cannot provide a predictable and professional practice for my clients I had to make this difficult decision until I feel my son has recovered from his transplant.   I will continue to post and let everyone know when we anticipate the date of Gabriel’s transplant.

I am thankful for:

1.  To all those that pray and support us through many ways... food, prayers, thoughts, comments, private messages on facebook/blog, and financially.

2.  Thank you for God's hand upon my son when he was admitted to hospital as I have seen his mercy and power on Gabriel's life.  

3.  For our amazing families who strive to do whatever they can for us.  We love you all Bender and Smith family.

4.  Thank you to people who commit their time to help my son whether it is private soccer lessons (Bill Johnson), piano lessons at our house (Rachel Van den Heuvel), and Gabriel's Northdale school teacher (Mrs. Hewitt), and his homeschool teacher (Miss Taylor), and to his grade one/two class who bring him such great joy when they skype in.

5.  Thank you to Jacob Story for your continued support.  Jessica and Bill we are glad to have you as a part of our lives and this journey. 

6.  Thank you to IDTTYS for donating a laptop that we can take to the hospital to skype and to be able to keep everyone posted about our journey.  Your graciousnes across borders will always be remembered.  Please check their website out.   http://idttys.org/

Please pray for the following:

1.       Successful Bone Marrow Transplant and Recovery in Post-transplant

2.       His new Bone Marrow recovers quickly

3.       Protection from Infections while his immune system is completely compromised post-transplant

4.       Protection over my girls so they remain infection free

5.       Protection over Grandpa and Grandma Bender and Grandpa and Grandma Smith so they remain
        infection free while they care for our girls at Ronald McDonald House.

6.       That we will be financially okay during this journey

7.       Peace and strength for Mike and I

8.       Please pray that his organs will be protected from chemo and radiation

9.       We are told that Gabriel will be 99% percent infertile after he receives full body radiation in  
        preparation for this transplant… I would like to begin praying that through God’s healing power
       that this is not true for my son.

10.   Gabriel’s body does not reject this transplant and he does not get any diseases or future diseases
from this transplant.

Balance is the Midst of a Storm

Most days our life exists of taking care of our children as all families do each day.  However, our family has the additional journey of cancer that affects “850 children per year in Canada” (http://www.cmaj.ca/content/180/4/422.full).  This statistic is hard to fathom, but researchers indicate that children still are affected less compared to adults. No child should suffer this disease and no family should suffer all the dimensions of this disease.  The question of balance does come to my mind a lot as I think of the many roles I play each day in my life as a wife, mother, my family roles (sister/in-law, daughter/in-law), friend, and social worker.   I want to know that I have done the best that I can in every role in my life, but this disease has caused me to realize that my expectations of balance has to be lowered in order that I show my children that life is what you make it.  I know with this journey that it is hard to maintain consistency in all my roles, and I have learned that all that matters is I do the best that I can in my circumstances.  We have choices to be positive, happy and to see our blessings no matter what our journey may be. 
Balance is a thought that all parents at some point during the life of parenthood question. These areas include:  balancing work versus family, independent needs versus needs as a couple, time spent with your children versus time as a couple, time spent with immediate families versus spending time with your own family, etc.… I am sure there are so many to add to this list that most families have to consider.  At this stage of my life the most significant balancing act that I face is the balance between feelings of overwhelmed, fear, and sadness versus creating happy, cherished and blessed moments.  My balance at the end of the day is to have more positive memories than the negative moments that are inevitable in this journey.  How can I create life of blessings in my family that surpasses what cancer does to a family?
I have been asked how do I walk this journey everyday.  I don’t walk this journey everyday on my own.  I walk it knowing that my Father in heaven whom loves my family is holding us close wanting to carry my fears, sadness and worry in his arms.     

Psalms 34:17-19 states “The LORD hears his people when they call to him for help. He rescues them from all their troubles.  The LORD is close to the brokenhearted; he rescues those who are crushed in spirit.  The righteous face many troubles, but the LORD rescues them from each and every one.” 

I do not understand the “why” of cancer in children and have cried and have been angry at God many times during this journey when I have heard and seen my son cry out in pain.  BUT, I do know that in this journey only good will come one day that will glorify God.  I trust in God that one-day we will look back knowing that I believed, was faithful, and see all that God is doing in my life and my family’s life.  I don’t know what is to come for the future, but I know one thing for sure that I cannot walk this journey alone.  I am only strong because my faith in God causes me to be strong and peaceful.  All credit goes to our heavenly Father above. I do not have the words to describe the peace and strength that has been provided when I am obedient to his word, faithful and seek him in all that I do.  I certainly have my days when this load gets heavy and I fail, but I am soon reminded that I don’t have to carry this load.  I am human with many weaknesses and faults that only through God can I surpass these frailties. 
There are days that I have to make hard decisions and it hurts every part of my being.  Today, my youngest daughter woke to the flu.  My son also had to go to the hospital to receive an injection of chemo in his leg.  This aspect of his protocol is the worse part for my son.  There have been too many days in the past that I had to be away from my daughters when they were sick so I could be with my son at the hospital.  My son places all his trust and strength in me, and when I am not there he cries in fear and more pain that my heart breaks.  I made the decision today with the knowledge that this journey is long that I need to encourage my son to lean on his daddy as he does with me.  Gabriel’s dad had to be the one to attend today and without me.  I wanted to stay home to take care of my daughter.  I wish that I could take care of Gabriel, Simone and Yasmine all at the same time.  I had to make a hard decision that hurt so much today. Cancer ravages so much in my family’s life that leaves me feeling tired and always searching God.  I know it is good to search, but it is in those times that this weight of this journey surfaces and it takes all my strength to sit and pray.  There are days I don’t want to pray because I am certain it is because anger overtakes.  However, I still subscribe to what I shared above even in all my weaknesses.   Some days it is really hard, and I sit in the quietness in my room waiting on God.
My son left today armed with a cozy shirt of mine that I just wore, his dad’s iPad to Skype me as he was getting his injection, and all my love in the “huggie wuggies” (my son’s words) I gave him before he left.  The hardest part was when I could not give him “huggie wuggies” as I heard and watched as he received his injection.  I know video skyping him today was helpful, but was not the same for him or for myself.  I am glad at least we were able to do that.  I was blessed to be able to snuggle with my youngest daughter when she was sick, and did the best I could to help my son.  All I can do is try my best, love, listen, encourage, teach, and support my children the best way I know how during and after this journey ends.   

UPDATE

Gabriel has completed two phases of his protocol.  He has just completed the first week of the next phase of his protocol, which will last 41 days.  The first month we will be in outpatient every other day.   Gabriel’s chemo is given through his port-a-cathe, and he will have to undergo 10 more leg injections.  Every Friday we will be at the hospital for almost 12 hours, so he can receive six different types of chemo and one steroid.  In addition, this chemo will bottom out his immune system to defeat the cancer and to make sure it does not return.  Gabriel will undergo radiation later in his protocol and at the end of the 41-day cycle may be when his transplant may occur.  At this stage, we have not heard anything about finding a donor.  They begin a computer generated search Locally, Provincially, Nationally, and then Internationally.  I am certain we would have heard if there was a match by now if it was Provincially and, even Nationally.  There are many parts of this protocol that are uncertain based upon many different outcomes and facets for my son.  We just take it day-by-day, and sometimes week-by-week.  

THANKFUL…

I am so thankful to Jacob’s Story (www.jacobsstory.ca) for taking the lead to support us through fundraisers and by organizing a food schedule through food tidings.  I am so thankful and humbled by the gracious support of everyone who has made or will be making us a meal.  Coming home to a meal after a long day makes me feel blessed and honoured that everyone is doing this for our family.  
We want to say thank you to all those that have supported us with gift cards to help us financially.  In November, we thought everything was going well with our son and decided to become a part of an opportunity to partner and purchase a commercial property for our businesses rather then throwing money away in two rentals.  One week after we gained ownership of this property we were given the news that our son’s cancer returned.  I was working 15 hours a week, and my husband was working a full week.  Now, we have the responsibility of 1.5 properties.  Now, I work 6 hours a week and my husband takes one day off at work and is home early other days to help with the hospital schedule.  It was a sad realization that our life changed in a matter of moments in so many ways that we had to determine a plan.  This small summary of our circumstances is what caused me to reach out.  Jacob Story responded and will be helping ease some of this burden through fundraisers and the continued schedule of meals.  I just wanted to express my gratitude to everyone.  When Gabriel was diagnosed in 2009, we did not reach out.  We isolated ourselves, and it made this journey hard.  This time…I realized I could not do this again in isolation.  It is the hardest thing for me to do was to ask for help.  Thank you so much to everyone for responding.
Thank you to all my friends and family that have provided support through gift cards, cards and gifts to bring us a smile.  I hope you all know how grateful I am for your generosity.  I hope one day that I can give as many people that I see a hug and a personal thank you for your amazing support.  

Thank you to Kyra, my best friend, for coming to spend the day with me at the hospital.  Your act of kindness touched me as you unselfishly gave up a day of work to come help me and to make my children smile.  Thank you to my family for being here to help and support us.  We love seeing you at home and at the hospital, and this time is precious to us.

PLEASE PRAY FOR THE FOLLOWING:

1.                  To help Mike and I grow together and not let this journey cause tension.   

2.                  Guidance and wisdom when the time comes when Mike and I have to make a decision concerning chemo or transplant. 

3.     Health of our daughters

4.     Healing for Gabriel

We love you all, and thank you from the depths of my heart.