In the dark….
Written August 26, 2013 11:07am
In the dark….
The hard days are here, Chase is back on the pain pump, TPN nutrition and the sores are back. Now he just wants to stay in a pitch black room, no noise and no light….so we sit and I try to keep him as comfortable as possible.
If you have a prayer, please share it with me.
I knew it was coming but nothing could prepare my heart for the pain…..
Written August 23, 2013 7:54pm
I knew it was coming, the day Chase broke down in tears but nothing could prepare me for the pain it caused my heart. Last night after a long day of sleeping off an on and trying to manage his nausea Chase said he was tired and was ready to go to sleep for the night. I tucked him in and cuddled him and before I knew It he was sniffling and crying, he quickly laid up in bed and said “oh no momma the tears are going to wet my pillow”. I hugged him as he began to sob saying, “I miss my family, I miss my daddy, I just want to go home”. I tried to console him and the pain just spilled out from his heart, “I do not want to stay here anymore, why cant they take off my toobies and let me go home”, “why cant Emma come and live here with me”. My heart sank and I tried to pull myself together so that my tears would not began to fall. He said “mommy my heart is broken, please call the nurses and tell them that I have a broken heart”. Every time he tried to calm himself because he was exhausted, the tears would just begin to fall all over again. I tried to hold him, tried to tell him I loved him and that Emma and daddy loved him but his sobs continued for over an hour. He started to panic because his nose became stuffy and he started to panic that he could not breath. I called the nurse in to give him some benedryl to help him sleep, he laid his head in my arms and cried until he feel asleep. Once he was in peaceful dreams I began to cry… my sweet baby boy. He is now old enough to know that there is a different life than just being in the hospital and does not understand why he must stay so long. I knew he would breakdown..he needs to…everyone needs to let out the pain but I felt so heartbroken and wanted to wipe his tears away and pray they never return. I know that will not be the case and so I hold him, I love him and I wipe away his tears. Lord today I come to you seek grace, healing and peace for my son. Wipe away his tears, hold him close and send him beautiful dreams of memories he has had. Lord I ask you to hold Emma as she sleeps, that she may feel my love. Lord I humbly ask for you to bring my family back together once and for all.
I know the path of faith and riotousness is not necessarily covered in flowers, Lord hold us as we try and pass over the rocks and bumps and bring us all the peace of the Lord.
Written August 22, 2013 2:08pm
It has been some time since I have update…for some reason this go around I have had a hard time finding the words to express how this journey is going. There are days I also find it hard to find the words for prayer so I have armed myself with my daily devotional and my bible in hopes that the mental block will soon leave.
Chase is in his second round of chemo in patient. His first round was very difficult and I do not think I was prepared for how hard it was going to be. We had already been through chemo once and I thought it was the most difficult part of our last journey, yet this time it is a whole different animal. Chase must be in patient for nearly the entire cycle which includes recovery. That means he is pretty much in patient full time. He had a tough go last time and the side effects came on hard and strong. Within a few days he was on IV nutrition because he could no longer eat, a 24 hour pain pump and had a pain team dedicated to keeping him as comfortable as possible. His medication list grew quickly and before we knew it his meds seemed to run all day. The most difficult part was when the pain became so strong that Chase literally spent over a week in a pitch black room, not wanting any light or noise and just slept on and off all day. He had to many blood transfusions to count that round. He would try and eat and his mouth sores (that went from his mouth down through his intestinal tract) would cause him so much pain he would just cry. It was so tough for me to know what the right thing to do was. I desperately wanted to take the pain away and at moments I wanted to wrap him up in his blankie and run away from this all. Towards the end of the 28 day cycle his counts started to recover and the bone marrow transplant team came in. They harvested Chase’s stem cells for 2 full days and were able to collect enough for when he requires transplant after the 3rd round of chemo.
Chase was able to enjoy a few days out of the hospital and we tried to make every second count, yet he was still very tired and fatigued from the chemo. We checked back into the hospital for round 2 last week. He had 5 days of chemo and his legs and feet were causing him a lot of pain. They have increased one of his meds and it has helped keep the pain at bay for a while. They are expecting his counts to drop again tomorrow and he will begin neuopogen shots to help them recover.
Right now he is in good spirits but still sleepy and tuckered out. He talks about what he wants to do when he gets out of the hospital and I think it keeps him looking forward.
Emma started school last week and has been in Tucson. I miss her so much my heart literally aches for her. We are working on a schedule so that I can spend a few days in Tucson with her every other week and if she wants she could come to Phoenix on the opposing weeks so she can see Chase and I. Our schedule changes daily and we try to take it one day at a time, and accept the fact that things may change in a moments notice.
I feel like my heart is torn, I want so much to mother hen my babies and keep them all under my wing and it is hard to be separated from either of them.
I know God will help us through…but again I ask for your prayers to once again find my words. I also humbly ask for you to continue to pray for Chase, Emma and Marc this journey is most definitely more difficult that we had first anticipated.
My heartfelt love to you all.
Angel M. Lock
Written June 23, 2013 7:10pm
Oh what a difference good counts can make…
Written August 5, 2013 9:06am
It has been a while since I have been able to update and so much has happened. In a few short weeks we found ourselves in the depths of pain and we are slowly crawling out.
Once Chase started his first round of chemo the side effects came on strong and fast. His body ached, his tummy hurt, he began to vomit and the worst of all was the mucusitus which are sores that go from the mouth all the way down the throat into the belly and through the intestinal tract. That was where so much of his discomfort came from. Within days the pain could no longer be controlled with morphine every 3 hours in conjunction with codeine every 6 hours, so the pain team came in for a consult. They immediately decided to start him on a morphine pain pump. I knew that was going to be an option but I did not think it would be during our first round. They taught Chase how to push his own pain pump to get extra bolsters of pain meds but even that did not calm the pain. For over a week Chase sat in a pitch black room, not wanting light of any kind and tried to overcome the pain. My heart ached to watch him and I begged for a way to help him. I told the pain team it was hard to see him so medicated and seeing the lost look in his eyes, they told me that if it were any adult that they would not want to be medicated because the pain is so extreme. He stopped eating and was put on TPN nutrition and I could hardly get him to take a sip of a drink because it hurt to much. Before I knew it we had more doctors than I could keep track of following Chase very closely, including a pain psychologist who will work with Chase throughout his treatment. He spiked fevers and required antibiotics multiple times, in addition his counts continued to plummet he required 4 blood transfusions in the past week and a half. They also started him on neupogen shots to increase his counts. Chase has to be on so many meds it takes almost all day to get him to do them all and he has his afternoon shot which he always dreads. The transplant team hoped to harvest his stem cells last Wednesday but his counts just would not budge. The day for harvest kept being pushed back hoping his counts would soon recover but they stayed put for a while and was at 0 for 3 days so he was confined to his room.
Yesterday his counts finally rebounded and they rebounded BIG due to the double doses of neupogen. They were finally able to start harvesting his stem cells yesterday. It is an all day process and he has to stay in the treatment room, which can be pretty boring but he made it through the day. They will continue to harvest his stem cells this week until they decide they cant harvest any more during this round. Last night after we got back to our room I noticed that Chase’s checks were pink and his color was better. His hair is now all but gone but WOWZA did he look more handsome than EVER.
Now for the BIG news….. Docs say that if we can get him to eat again and get off of the pain pump and antibiotics he may be able to go home (Ronald McDonald House on PCH campus) on Friday. I literally wanted to dance in the halls to hear that news. Although we will only be able to be out for a few days before we start round 2, Chase really needs a little bit of time to have some fun! This morning I felt like I woke up and saw my Chasie for the first time in weeks….he gave me a 4 a.m wakeup call and a great big smile. He was polite and nice to the nurses (a big step for him) and has been enjoying icy cold milk.
God answers prayers…not in our time but in his.
I was able to go home and see Emma for a few days over the weekend. I missed her so much my heart ached to hold her and simply breath her in. We spent the weekend getting her ready to start 1st grade in a few weeks and doing whatever she wanted. Which included, me cooking her favorite dinner, miniature golfing, Mini Time Machine museum, bubble bath, face masks with mommy, foot massage, fixing the garden and cuddle time. It was a great weekend but it was so hard to give her a hug and say goodbye.
I learned that I do not know how to get Chase, Emma or myself for that matter through 9 months of this. So I have decided it is one week at a time and prayer….
very much learned……
Written July 21, 2013 11:11pm
1. If you have a picture of chase with your child, would you send a large photo so he can see it from his bed. The bone marrow Doctor said it would help to see pictures of hisself before his cancer came back. I you were a nurse or teacher he knows also send a pic of yourself.
2. If you are good at google searches I saw this girl in the hospital riding a small bike that had a place for her Iv pole and lines. We are looking for ways to Encourage chase to get out of bed and use his muscles. Any good idea or let me know of you find something online.
You can send pics to Phoenix children’s hospital room 7116 chase lock bone marrow transplant unit.
Thank you from the bottom of our hearts.
Written July 18, 2013 12:03am
We also found out that the pathology report came back indicating that the tumor was recurrent CPC. It was not the news we wanted to hear so we continue to lift Chase up in prayer. We met with the oncologist to discuss his plan. The chemo plan was written by Dr. Finlay in LA and then will be executed in Phoenix at Phoenix Childrens Hospital. It will consist of high dose chemo, stem cell rescue and a stem cell transplant. I knew we would need to stay in Phoenix more in order to be close to his doctors for his safety, but I was caught off guard when the oncologist said we would be spending a majority of the next 6 months or more in patient in the hospital. There are to many risks of infection and Chase’s side effects would be better managed in patient. So maybe only 5 days (if that) out of the month we will be allowed to leave the hospital, but I don’t even know if we will be allowed that, only time will tell. She also said we would be admitted the same day (yesterday) to begin the preliminary tests needed to start chemo i.e kidney test, endocrine test, and hearing test She also put in orders to place his central line (a double lumen line broviak) as soon as possible. They put him NPO (no food or drink) at midnight last night. Poor little man was not able to get into surgery for his central line until 6pm, which meant he was NPO for 18 hours. It was a tough day on him, and he was taken back to surgery at 6pm. He woke up and ate dinner and sadly he has to be NPO yet again…. he will need anesthesia again tomorrow to do his hearing test.
In order to give Emma some since of normal she will be staying in Tucson. Marc will work and take Emma to school so she can begin her 1st grade year and try to have a normal 6 year old life…as much as possible at least.
We strongly appreciate your prayers.. We appreciate all of your thoughts but questions about our family situation for Marc at work can take time away and his focus during that time is on his business, thank you for your understanding on that side.
My heartfelt and humble thanks for your continued prayers for our family.
Hard to find the words…..
Written July 15, 2013 12:57am
When I first walked into the cold I.C.U room I saw my sweet little boy on what seemed like a huge bed. He looked so small, and the tubes that surrounded him were a striking reality of his battle that is to start once again. I did not want him so exposed, I quickly fumbled for his blankie to cover him. I kissed his head and warm tears feel down as I stroked his face. It took a good while for him to wake up. The first thing he said was “my nose itches”. I was happy to hear his voice happy to see him move his limbs and so happy to look into his deep brown eyes. As the anesthesia wore off the discomfort started to set in. He did not sleep that night and was constantly startled every time a nurse walked in the room. The safe confines of his home where there are no owies and no pokies seemed so far away. He finally cried saying “why are you hurting me” as the nurse came in once again. I tried to tell him that they were there to help but he simply does not understand. With each day that passed he was able to loose one or two lines at a time. Finally on the third day we were released.
Now we have two major things going on. Although the neuro surgeon was confident he was able to get the whole tumor out the post opp MRI report read “residual tumor spotted”. There is no way to know for sure…so we pray. We pray our neuro surgeon was once able to achieve the impossible. We also wait to get the final pathology reports which we hope will be in tomorrow. Once they come in things will start to move quickly as we move into a plan to help him fight once again.
Chase is recovering at home and is still having headaches. On Saturday morning he began to vomit and this meant an immediate call to the neuro surgeon. Now we are watching him closely and trying to manage the pain.
When this all began only a few weeks ago I wept and thought, “why is this happening?”, I believed God had given me the peace that he would be cancer free. Now I know that Satan has picked a fight… a fight to have our faith tested, a test to divide our family, to give up hope. He picked a fight with the wrong momma! I hold strong to my faith and my trust in the Lord.
I thank you all for the prayers and kind words. Please continue to pray.
Written July 3, 2013 10:45pm
Chase had his lumbar puncture today and did well coming out of anesthesia. I thought he would do okay this go around with the lumbar puncture but recently began saying his head hurt, so I am praying it is not a spinal headache!
The days have been long and tiring and my poor babies have been so patient but are also tuckered out.
We have scheduled surgery for this Monday at the Barrows in Phoenix. Please ask in Gods name and it will be done.
Written June 30, 2013 4:58pm