Saturday, May 16, 2009

Difficult Times

I have wanted to post a blog earlier, but our journey has hit a few bumps in the road. It has been a tiresome two weeks for us, but we have survived yet another. I am thankful that Gabriel is young and cannot understand the dimensions of cancer. However, as an adult and his mother I know too much about this disease that causes us more pain than our own child. He is a little boy with high spirits, lots of energy and so much love. Cancer is too complex for his mind to comprehend and we are glad. You would not even know that battle that goes on inside his little body when you look at him. It is still often difficult for Mike and I as we speak to doctors and visit the hospital each week. We wish we had the ability to be like a child where no worries intrude our thoughts. My human side always has a way to inflict pain, misery and worry. I realize that the more this occurs I have not spent enough time in prayer and reading my scriptures. I know Satan is always ready to insert a negative thought in hopes to defeat my faith.

Our journey these past two weeks has involved admittance as an inpatient twice within two weeks. Each inpatient stay lasted for 3-4 days.

The Discovery

The first inpatient admittance occurred as a result of an anaphylactic reaction to a chemo medicine. Gabriel's reaction occurred 4 hours after his injection, which shocked most of the outpatient staff. I was resting inside after a long day at the hospital for a routine day of chemo. Mike took our children outside to play. I went to visit them out the deck and announce to Mike that their bedtime was approaching. Gabriel came walking up our back steps and I caught out of my peripheral welts on his head. My stomach felt sick at this time as I feared what this meant. However, I did not want to overreact. As Gabriel was coming back to see me I asked Mike immediately if he got hit in the head. Gabriel did not get hurt. As Gabriel neared I realized that they were not typical welts, but a reaction. I concluded further when I noticed his eyes were bloodshot. I quickly grabbed him and checked his belly for spots. Gabriel had the beginnings stages of hives. I quickly yelled for Mike that we have to go now. Gabriel was given his required dose of Benadryl to decrease his reaction until we were in Emerg. The scariest part for Mike and I was when Gabriel spoke his voice began to sound hoarse, which meant his throat was beginning to swell. We were thankful that the Benadryl took affect quickly and he responded well to this medicine. We were immediately admitted to hospital as inpatients so the team of doctors could monitor him for further response to this chemo medicine. This was our first experience in the ward with four other families. This stay meant limited sleep as nurses, heart monitors and much more interrupted our sleep. We were discharged days later and did not assume we would be back in hospital only one week later. We are thankful for the immediate response by the team of doctors and nurses.

Second Admittance

The second inpatient stay within one week resulted from Gabriel becoming febrile. A common routine is to check Gabriel for a temperature prior to putting him down for the night. He was fine at bedtime. In addition, I always check on my children just prior to going to sleep myself and throughout the night when I wake for a bathroom break or just to check on them. It was about 1 a.m in the morning and it was during routine check that I felt Gabriel's forehead with my cheek. I discovered he felt warm, but needed to check his temperature accurately. It read 37.5, but needed to wait one hour to read again to be sure. I woke Mike to tell him about Gabriel feeling warm and that we should check again in one hour. We set our alarm. When the alarm went off, Mike went to check and came back reporting a temperature of 37.6. This temperature for most children is fine, but for Gabriel it is an alert that we may have to go to emergency. Mike was uncertain about whether to trust this temperature, so I came to check. At that time, our thermometer was bouncing from 37.6 to 38.3, which is a huge difference for kids with Leukemia. We immediately called the Pediatric Oncologist on-call that evening. The immediate decision was to proceed to the emergency department early in the morning, which of course was now Thursday. I made the most difficult decision in that moment for any mom. The hardest part for me is to be the best mom to all of my children, in spite of the circumstances that I have been confronted with. It would be easy to give lots of attention to Gabriel for obvious reasons, but our journey will last many years and I cannot imagine missing out on my other children's life. I needed to stay with Simone as I get quite upset every time I leave her behind. It would not be fair to her if she was left behind by her parents every time we left for the hospital. I chose to not work full-time because I want to raise my children, not for someone else to do. I decided that Gabriel would of course be fine with just his dad, and that sometimes he would need to have only his dad and not me. Mike is a great father and I felt totally confident in Mike's ability to help Gabriel. I did not realize that as the night progressed how difficult this decision would become. It was the worse evening for me throughout all of this treatment.

I stayed home for Simone, not for myself as I did not expect to get any sleep after they left. Once at the hospital, Gabriel called me crying on the phone every 15 minutes. The worse feeling in my life was that I could not hug my own child while he was scared and crying. He kept repeating over and over "mommy, please come." I tried to talk to him, but he is only 3.5 years old and all he needed was me to give him hugs and tell him everything was going to be okay. Over the next two hours the calls got worse and worse as they began to take blood from his arm and his port. I try not to remember these calls, but they will haunt me for so long as I remember the pain in his voice and was not there to hold him. I know I stayed with my daughter for the right reasons, but at 5 a.m. I made the decision to briefly wake her to get read for our leave for the hospital. Simone quickly fell back to sleep and I was glad to be on the way to the hospital. Simone is such an amazing child that nothing seems to cause her any difficulties. Her disruption in sleep did not damper her spirits, but was soon off to sleep for the car ride to the hospital. At the hospital, she was thrilled to looked at the pictures of the animals on the wall and to lay beside her brother to watch cartoons, crawl on the bed or just chat in her own words. Gabriel was so happy to see both of us. I was happy to have not waited until our agreed time to leave. I know God has blessed us with amazing children, and our third child will be such a continued blessing that will complete our family. We were at the hospital until Saturday afternoon, which we were glad to be home. We were able to stay in a private room at the hospital as Gabriel was neutropenic and could not be around other people. He has been fighting a cold and cough at home. It was not so bad when his immune system was high, but his neutrophils began to plummet. As a result, his body was not capable of fighting this infection on its own. We are thankful for the hospitals stringent protocol for children with cancer, even though it is a difficult place to stay. We see so many young babies, children and teenagers fighting many diseases, which can debilitate your mind if you allow yourself to ponder such atrocities. I let sadness impede my thoughts for a few hours when I became tired of seeing a young baby continuously being left by himself. This baby does not have anyone staying with him and does not even get frequent visits from family or friends. I was told the parents visit infrequently. I asked if I could visit with him and the nurses indicated "of course." I was overtaken with sadness, and did not know what to do. I prayed for guidance. It seems so unfair for a child to be left with the continued change of nurses trying to complete their rounds. A child receives security through his or her attachment through parents or permanent caregiver, and this child appears to not have attachment figures, especially during a difficult battle with a disease. PLEASE PRAY FOR DANIEL.

We are back home and looking forward to some earned family time together. We are not sure what this will entail, but we are happy to be together outside of hospital grounds. Please continue to pray for strength, perseverance and healing. We continue to thank God for the strength he provides as we could be dealing with this journey very differently.

Future Changes

As a result of Gabriel's reaction to his chemo medicine we are now expected to be visiting the hospital more often. Gabriel has to receive another form of chemo, but this involves three needles a week over a two week period each month. I am thankful that the outpatient clinic (PMDU) in London as the staff is so gracious and helpful with both my children. The staff make is so easy for parents to bring their other children as I could not leave Simone behind this often.

Thank you for checking in on how we are doing!