Monday, March 30, 2009

My Honest Struggle

I just put my children to sleep for their nap. I was hoping to do something for myself, but once again, I am drawn to everything that keeps me reminded of the fight that Gabriel and our family faces everyday. I feel quite tearful today as I am reminded that life is so different. I just want to be with my children all the time, without the extra pressures of my lawn, housework, laundry, meal planning, bills, etc... We all of have to face these responsibilities each day, but for me they have become a burden and a hassle. I wish that all these particular areas could be put on hold, so that I could be with my children without these jobs in the back of my mind adding extra pressure. I wish everyday that I could go back to life where these were the only burdens I faced. Even though these familiar life tasks continue to remain they do have a new sense of meaning. These tasks may continue to be a part of life, but I am now reminded of how insignificant they have become compared to the journey that we are currently walking.

I had the blessed opportunity to read a parts of blog from an individual following our blog who shares the the pain of a child suffering with leukemia. One of the statements that was shared in this individual's blog was the following statement that I have often heard too. "God does not give you anymore than you can handle." We know that the intent of this statement has well intentions, but I would like to quote this individual's blog statement as I could not write it any better. "What it means to me is that God has "blessed" us with this trial because He knows we're strong, stalwart individuals whom He has especially chosen to prove to the world that we can take whatever comes our way. " As well, I am including another blog taken from this post by a Pastor's wife who stuggled with a daughter's heart problem since birth. Please read this post at http://inthemidstofit.blogspot.com/2006/07/too-much-to-bear-by-myself.html
I, too, share the very same thoughts posted in both of these blogs. This journey is too much for me to bear, I have no control, I have no choices, and I hate every trip to the hospital. I hate this journey. I have been teaching Gabriel not repeat the word hate even if others say it as the meaning relays something so strong. Today, this is the only word that defines how much I truly feel about this journey. I have no choice as I would do anything for my children. When I was pregnant with Gabriel I had a belly casting done so I could remember those precious moments of the miracle that God has given me to carry and give birth to each of my children. Upon the casting I placed this popular quote by Maureen Hawkins "Before you were conceived I wanted you, Before you were born I loved you, Before you were here an hour I would die for you. This is the miracle of life." This quote remains in me and will for my entire life. I can't bear this pain because of the love only a mother can feel for their child. For one of the many reasons I lean upon our Heavenly Father so that He will bear this for me. I am not strong enough to do this journey on my own. Therefore, this statement above is reflected incorrectly because if it wasn't too much to handle then why would I even bother giving my pain, my worry, my fears over over to God. I want this journey to never have started so I could have the normalcy of life. I don't want to have to worry about my son's neutrophils and I don't even want to know what a neutrophil is. I want to be able to take my son to a busy movie theatre and to any place we want to take him. However, we can't! This is my new life and I have no choice. I cannot and will not do this journey on my own. I have needed God for many things in my life, but I cannot bear this at all without God directing my path and my thoughts. "I am weak, but he is strong." Please continue to pray for strength in me as I cope and deal with this journey. Thank you for being a part of this emotional and faith building journey I am taking.

Thank you Aunt Bertha for reminding me about the song "Safe in the Arms of Jesus."

Thursday, March 26, 2009

17 Hours in Two Days

We spent our first 12 hour day at the hospital on Tuesday for intensive chemotherapy. It was a long day, but we made it though. However, I was scheduled to return to the hospital the following day for Gabriel's blood transfusion. This procedure takes four hours and then there is preparation time that is not included in this time. Gabriel was somewhat angry yesterday as a result of having to be at the hospital so much. It is so difficult for him to understand these long days when most of the time he is feeling well. He is doing much better now that he is at home, but sadly, he will have to contend with a homecare coming a few days this week and four days next week to place chemo just under is skin by needle. The whole process is quite overwhelming at times. This journey has difficult days and good days. I have prayed for at least one normal day since diagnosis, but I have come to realize that normal will be very different for us until he is cured.

Tuesday's procedures involved a chemo drug called cyclophosphamide through his IV. This drug is particularly serious as it requires two hours of IV fluid prior and 6 hours of IV fluid after to ensure he is protected. In addition, Gabriel had his first dose of a drug called Cytarabine inserted into his IV, but thereafter, this drug is given as a needle in his leg at home. Gabriel also had a spinal tap where another chemotherapy drug called Intrathecal Methotrexate was inserted to prevent leukemic cells from spreading into his central nervous system. Gabriel continues with one chemo drug at home called Mercaptopurine and the medications to suppress nausea from the chemo drugs. I keep a chart at home to make sure I am properly administering all medications .

Thank you once again for following our blog. I will be updating this blog at this time once or twice a month or when any particular news arises. Please don't hesitate to e-mail or call. All the best to you all.

Saturday, March 14, 2009

Smith Family News!

I wanted to take this opportunity to share some good news for our family. I have debated telling everyone early, but as time is progressing our news is becoming apparent as I seem to be showing too early for my liking and the eyes I see in public appear to question. The Smith family will be welcoming our third precious baby into the world on October 26th, 2009. This came to our family as a shock and to me feeling overwhelmed, at first.

Our story: Mike and I have discussed having a third child, but without a clear answer as to whether this was right for us. I have prayed often seeking an answer to this question, but was never clear about God's plan. A few weeks prior to Gabriel's diagnosis we made the decision that we were happy with just having our two children. However, there I was always hesitant and uncomfortable with this decision. Upon Gabriel's diagnosis and as inpatients at the hospital I spoke to Mike and stated that I certainly could not have a third child for so many reasons. In particular, Gabriel diagnosis has produced fear that I am trying to ask God to take from me. The fear was so pronounced in me that I could not imagine another one of my children facing the chance of this diagnosis and the fear that my expectations that I place on me as a mother would not be achieved with the demands that our future would face. I share this with you all as a testimony to what God can do in our lives to show that He is in control and that I need to always rely and trust in Him. God chose a different path for the Smith family. We, surprisingly, discovered I was pregnant in the hospital during our second week. Many emotions rushed in as described above, but I am now realizing that we always continued to want our third baby. We are preparing for the extra demands that a newborn may place upon us, but we are ecstatic that we will be having our third blessing from God. You may be wondering if I feel overwhelmed still? Sometimes, but mostly I am having faith that God has equipped me and will continue to equip me with whatever I need to be the best wife and mother. I can only continue to trust in our Heavenly Father as He "shall not leave me or forsake me."

Please pray for my continued health and for our unborn baby. In addition, I am wondering if everyone can pray for marital strength as this is certainly a difficult time for Mike and I. It is testing every strength we have as a couple and sometimes we feel we are not doing this well together as a couple. Thank you once again for reading my blog as I know I have shared a lot of myself with you all over these last few weeks.

Friday, March 13, 2009

Clarification of Gabriel Contracting Infections

I wanted to post two blogs today to update everyone on Gabriel's progress and procedures, but to add an additional blog discussing visits. The second most difficult process that Mike and I have to face all the time outside of leukemia treatment is including and excluding visits from family and friends. We would love to visit with everyone and hope that over time we can see you all. We miss our family and friends a lot, and we appreciate any phone calls and/or e-mails that you send. We apologize if we do not respond immediately or even within a few weeks, but please know you phone calls help to know that you are thinking of us at this time and that we are not forgotten over the duration of treatment. Our faith in God and your support and care is what helps us cope during difficult days, even when it is a brief message on our voice mail or even an e-mail.

Our Nurse Practitioner and Pediatric-Oncologist's recommendations for family and friends visiting:
  1. If you or any of your family members have been sick you or your family members should not come in to contact with our family. Once you and your family member are three days free of symptoms, then you are welcome to visit. This particular recommendation is dealing with colds and flues.
  2. However, if you or your child are in contact with more severe illnesses a required time of two weeks free of symptoms is required. Please always check with you GP to determine whether you are contagious.
Reasons for this Visiting Policy:
  1. Regular colds and flues can cause Gabriel to be really sick at various times throughout chemotherapy. This infection could involve hospitalization even up to one month. It is unpredictable and you may not always know you are sick until a few days later. However, this is the chance we will take when we choose to visit with you. We do advise you that if you have visited and you become sick a few days later to contact us immediately to inform us.
  2. In addition, chemotherapy must come to a halt upon an infection, which sets his therapy back a lot further and less chance of fighting his leukemia when he is not receiving chemo. Once the infection has been treated and Gabriel's blood counts are substantial then chemotherapy will occur once again.
  3. Infections for Gabriel, depending on how severe, can mean life or death.
Final Note:
Mike and I will continue to weigh out the pros and cons for everything in Gabriel's life as to whether things will benefit him more than cause him damage. We can only decrease the results of damage when we know there is a clear case of infections. Please know that we can't and won't be able to prevent all infections as we still will be leading a normal life. Mike will be going to work, and we will continue to visit stores, etc. Furthermore, we intend to visit our family and friends who may not always know you are infected until after our visit. We intend to not live in a bubble as much as we can achieve as this will prevent further mental and developmental issues for Gabriel. I am quite aware of the symbiotic relationship that exists between our physical and mental well-being, and try to debate the risks between these two areas of humanity every time we choose to be involved in an activity. There will always be a chance for infections as this is the world we live in. Therefore, we can only control and decrease Gabriel's risk through the apparent signs and symptoms of infections as pertaining to the above policy for visits.

We have come to realize this will cause some frustration as plans may change within a matter of minutes and also it can be painful for children if they were looking forward to playing with Gabriel. We know it is hard for children to comprehend such quick changes. I know as a Social Worker, communication in their language is important to assist in decreasing "some" hurt feelings. If at any time, you would like me to speak to your children to explain the circumstances, I would be pleased to assist where I can. We want to see you more than you know and we want Gabriel to play like a child should, but sometimes the risk is too great. Mike and I truly apologize for any future inconvenience this may cause even if it is just a simple cold. We will always reschedule for a future date and will look forward to the time we get to spend with you.

Okay, I know this was quite formal compared to my previous blogs. We love you all!

Day 29 of Induction

Today, we officially ended induction with the completion of a spinal tap and bone marrow for this round. These procedures were to confirm that remission has continued, which is less than 5% leukemic cells. Gabriel continues to be in remission with having less than 3% leukemic cells. The lab does not send results as to whether there is less than the previous bone marrow as there is some discrepancies between some of the leukemic cells and regular cells based on the small difference. This is excellent news and we are once again relieved and thanking God. We will proceed back to the hospital on Friday to have blood counts done as Gabriel's hemoglobin had dropped (normal to occur when on chemo), but they need to be at a certain level prior to commencing with "intensified consolidation" chemotherapy. However, we will be on alert for lethargic behaviour indicating his hemoglobin has dropped significantly that requires an immediate blood transfusion. We pray his hemoglobin count will not decrease any further so a blood transfusion is not required. The less time at the hospital leads to a better mental health for the Smith family. The next process of chemotherapy involves a change and pattern of oral and intravenous medications. In addition, Gabriel will require a needle that injects medication under the skin four times a week (not sure if this is for the entire month) and a weekly spinal tap for one month. A nurse will come into our home to administer the needle under his skin in his leg. This next process seems more difficult, but time will tell as we still need to have this new time-line discussed. Thank you once again for keeping us in your prayers and thoughts. We wish all of you well and hope that you are able to enjoy your precious time with your own family.

Monday, March 9, 2009

First Trip back to the Emergency Department after Diagnosis

On Saturday, we noticed that Gabriel's abdomen bruise that started this journey with Leukemia began to turn an odd bright red colour. On Sunday evening, as I was bathing Gabriel I discovered that his bruise had increased in size and colour. I contacted the on-call Paediatric Oncologist to determine whether this change was a concern. The doctor indicated she could not assess over the phone and with the peculiar change we were to go to the hospital immediately. Gabriel being in the first stage of chemo called induction makes everything more urgent. We were nervous as we all jumped in the car as to what this would mean for our family. Once at the hospital, we were moved into isolation through the back doors to prevent a walk through of where everyone who is sick waits "somewhat"patiently to be seen. A whole different life attending the emergency department when you have a child with Leukemia. We felt horrible knowing there were so many families waiting for a doctor to see their sick child. The nurses indicated that this night seemed to be exceptionally busy. There were 25 people in the waiting room and all the beds were already full. We are blessed to be in Canada with our health care system, but there still needs to be some improvement when families cannot get a bed in emergency or even on the floors when they are admitted.

Many different people came in to see Gabriel. It gets frustrating because Gabriel has to be checked by so many new faces who tend to all do the same thing over and over. The seventh floor paediatric unit came down to emergency department to access Gabriel's port-a-cathe. The nurses in the emergency department are not trained to do this procedure. They took blood for three different tests to determine the problem. The wait began to drag on after his blood work was completed and I began to get concerned. I approached the nurse at the front desk to inquire as to why the wait for the results was taking 1.5 hours. She stated she would call to find out. After the phone call, she stated they had to double check the results as there was something they were not certain about. Hearing such words does not put your mind at ease, but quite the opposite. I was not expecting this news. I, shockingly, walked back to our isolation room to report this news to Mike. We were both troubled. Mike went to seek further information as he was confused. At this time, I began reciting Psalms 138:8 over Gabriel as I awaited the results. This passage says "The Lord will perfect that which concerneth me; thy mercy, O Lord, endureth for ever: forsake not the works of thine own hands. The first set of news began to come back. We were happily shocked to hear the following. Gabriel's blood count numbers are as follows: white blood cells 3.3 (normal is between 5-10), hemoglobin is 122 (normal), Platelets 225 (excellent and has increased from 158 to 225 in a matter of two days and his Neutrophils are at 2.2. He is no longer considered neutropenic and can fight infections. These numbers will go up and down throughout chemo, but it is a good sign for us at this stage. Thank you heavenly father for your loving hands upon our family. We sat there a little longer waiting for the final test that would determine whether we would be inpatients once again that evening. I continued to recite this passage and soon thereafter the doctor came back with our news. She reported "EVERYTHING IS FINE, YOU CAN GO HOME." Mike and I were so happy. Every trip to the emergency for us will be one that will be filled with anxiety, but at the same time with hope and peace that our Father in heaven is taking care of us. We are not sure what they were double checking and the concern, but we were just so ecstatic to know everything was fine. Today, I have to take Gabriel to the outpatient for the on-call doctor from last night to look at his bruise as she still thinks it is somewhat strange. I am just thankful for the results last night. Our journey continues...

Monday, March 2, 2009

So Many Emotions-Pain, Fear, Sadness, Happy, Inspired

Today, I struggle with this blog as so many emotions and thoughts come to the forefront. I have shared a vulnerable emotional side in this blog for the following reasons: to help and inspire others whom may face similar circumstances, show the power that God can have over our lives if we commit to Him, to provide you all with consistent information and to assist with writing a journal to release my own thoughts and emotions. However, I know that unless you are a parent who has suffered watching your own child with cancer it will be hard to empathize this pain. We truly comprehend the lack of not being able to empathize as we were once those parents with a healthy child. I, was the parent, who watched the advertisements for Toronto Sick Kids and would remark to myself "I can't imagine what those parents must be going through." In the past, this statement could never depict the immense amount of pain it would be to watch your own child, who you conceived, go through the procedures that "no"child should ever have to go through. I know our prognosis is so much better and we are receiving positive reports as this is the piece I happily and without hesitation share with you all. However, this is just a debriefing and not the full story as I hesitate to share the exact journey we have and will take for the next 3.5 to 4 years of the "Smith Family's life". Today, I need to share those missing pieces that I have left out of my blog. It is the pain and misery that strikes us every time our son is forced under general anaesthetic for a spinal tap that he will receive once a week for three months, to watch them subject him to chemicals every week that have so many risk factors and repercussions such as heart problems, induced secondary leukemia, heart problems and the list goes on. The unbearable pain when I had to listen to him scream "mommy" as I was forced to leave him as I walked down the long hall because I was not permitted in the room to watch him fall asleep for surgery. We had to and will continue to cope with listening to him scream as they take blood every week to check his blood count. Even though he has a port it is not used for small blood counts. This is just a few of the aspects we will face over the next few years. As you can briefly read it is this process that makes this journey so difficult. Simone, our amazing daughter, has picked up at an early age something has changed significantly in Gabriel. In one week, she has transformed into a person that Gabriel needs so much in his life. She makes him laugh. Her personality that God has given her inspires us to laugh and enjoy the small moments in life. God has given her an amazing personality that cheers all of us during the most depressing of days. One day she will know what a true gift she is to her mommy, daddy, and Gabriel.

Mike and I want to express our appreciation for the best wishes and praise for the prognosis thus far. Please also remember the journey we will be taking every week to diminish the cancer cells forever. Therefore, prayer and a listening ear are the most powerful gifts you can provide.

Today, we were informed of the protocol for Gabriel's next 3.5 to 4 years. It is great that he is a fast responder, but based on the diagnosis of the trans located leukemic chromosome his treatment will still be intensive. This means an introduction of more drugs, more frequently and weekly spinal taps where chemo is inserted. Mike and I understand the purpose of this treatment, but it does not beget the pain that produces in Mike and I.

Praise God for the following:
making him a fast-responder
that he has ALL and not AML
that he has not had cancer in his central nervous system
that he is three at time of diagnosis as this increases cure rate
that he has less than 3% cancer cells left in his body as of today
that his blood counts are changing to positive counts (his hemoglobin is at a wonderful 131, his neutrophils have increased slightly and he is beginning to make his own platelets)
Thank you heavenly Father!!!!!

Prayer Request
Please continue to pray for Mike, myself, Gabriel and Simone for strength, peace, and trust in the Lord's will. In addition, we ask for Prayer for protection over Gabriel as he does not face the risk factors known and unknown to chemotherapy.