After a long and nerve wracking day of chemotherapy on Friday, CJ is now home and recovering over the weekend. CJ went in early Friday morning to begin a new course in his maintenance phase of chemotherapy only to discover he is neutropenic (very low white blood counts) which puts him at high risk for infection.
That was a shock since he was fine the last time we had counts done and we have been going about business as usual. We are on a race to boost his counts between now and Wednesday since we are scheduled to leave on our first ever family cruise. I will share more about that amazing opportunity God has given us in the future. Unfortunately, the low blood counts were only the start of the roller coaster of emotions to come.
We arrived early Friday and for the most part things progressed as usual until they accessed his port. As he waited for them to get everything ready, (it all has to be a really sterile environment so it takes some time to set it all up) I saw the tears forming in his eyes and this broke my heart. He has been so strong in this area lately that sometimes I forget how extremely difficult this actually is for him and how far he has come.
Let me just say that you can usually tell when a child is getting his port accessed because that is where all the crying and screaming is coming from. CJ had difficulty in the beginning but he has really learned to manage the anxiety of the port access. I talk to so many parents going through this and read about so many other kids on their care pages, and the port access is a huge issue for many of them. For some it is the needle being inserted into their chest. For others it is the large tape that will cover it all and stick to their chest only to have to be painfully removed later. But for all of them, it is the reality of what it stands for. They are painfully aware that they are about to receive medications that will in all likelihood make them sick, or tired, or weak, or immune suppressed. It is all the port represents that contributes to the tears and anxiety.
As his tears rolled down his cheeks and my heart broke, I held his hand and he squeezed hard waiting for it to be over. The needle went in smoothly only to get no blood return. We were sure the needle was in and the port was accessed properly because the nurse was able inject fluids into the port. Nevertheless, it would not show blood return when she pulled back on the syringe. So after three attempts, which means three separate needle entries into his chest, and switching to a one inch needle instead of a 3 quarter inch needle, it still would not work. They still needed blood to get his blood counts done so they decided to draw from his finger to get that started while they worked on the port and tried to get the blood flowing.
In an attempt to unclog the port, the the nurse got him up and out of the bed and had him doing stretches, and reaches, and touching his toes, and anything she could think of as she pulled back on the syringe trying to get the port unclogged and the blood flowing. Still no blood return! My anxiety was rising a little and I was trying not to think too far ahead to the "what ifs". Thankfully, CJ has great nurses that really care for him and are amazing at what they do so that helped me stay calm.
Since he was able to receive fluids in the port they could still use it to put him to sleep for the spinal tap and chemo injection into the spine. They decided to insert and IV in his arm while he was asleep so they could give him another chemo med he needed.
This is when I realized why it was so important they get blood return before injecting the chemo. If for any reason the chemo medication he was receiving leaked even a little because of a tiny hole in the tubing or inadequate access to the vein, it would eat away his tissue and flesh and leave a horrific wound. Needless to say or detail for you here, it was a nerve wracking experience for both me and the nurse injecting the chemotherapy medication directly into the vein and praying it was going in okay. She kept stopping and checking his vein again and again and she flushed it repeatedly afterward to assure it was in completely. I was never so happy for it to be over.
After the spinal, while he was sleeping, I was standing by his bed and looking down at him and suddenly it really gripped my heart to see him laying there with the wires and needles coming out of him and the monitors beeping and counting his breathing in the background. I have stood over him like this multiple times now so it is hard to explain what I felt and why this particular time. It was not like the first times when it was all so scary and new and overwhelming. It was different. I don't even think I can explain it adequately other than to say it just seemed to hit me at that moment all that he is battling to beat this cancer. He does so well in between appointments that it is easy to lose sight of it all. We spend so much of our time focusing on helping other families and kids in this battle, but when I stood over him this week it was like, "This is my son laying here going through this." I don't know. I know this is not making sense. Here, you stand over him and maybe it can better explain what I felt.........
Once it was over and the nurse and I could breathe again because CJ's vein did not blow up, I stood by CJ's bed and waited for him to wake up. I could overhear the family in the next cubicle as they received instructions about what the next two years of their lives would be like now that their 11 year old daughter was diagnosed with cancer. I just sat there and experienced it all over again like never before. This child will be on a very similar protocol as CJ, so to hear the same things being repeated that we heard those first days was eerily reminiscent.
I remembered what it was like and how overwhelming it all was. I could not believe I was standing there over a year later as another family was just entering the battle. I kept thinking, What can I tell them that will actually help? What would I have wanted to hear from another mom that day? What would encourage me? Did some mom in the next cubicle overhear us that first day and feel the same way? So I waited, and battled the feelings of inadequacy and temptation to 'mind my own business'. Instead, I introduced myself and told them about CJ and assured them it would get easier. I encouraged them to lean on their faith in God and each other not their understanding of cancer.
As I sat back down in my own cubicle I wondered if I was totally honest. Does it get easier? Could I honestly say that I would I describe today as easier than a year ago or just more familiar and routine? I might have to rethink my approach before I start the mentoring program of newly diagnosed families.
CJ eventually woke up and the nurse decided to inject some medicine into the port and see if it would unclog it. We would have to wait an hour and if it did not work he would have to have a port study done, which would included dyes and scans, to see what was wrong and if he needed a new port, so lets just say I really wanted this medicine to work. After a few tries throughout the hour it was still not working. At the end of the hour the nurse tried one more time. This time dad was at home praying for it to work. She tried and nothing happened. Then she pulled back again and there was the most beautiful flow of red blood I had ever seen. The nurse was happy! I was relieved! And CJ was ready to get it out of him and go home! As I told you way back in the beginning of this journey when we were first introduced to ports, I never thought we would be praying to actually see blood. Welcome to the world of childhood cancer!
By the time we left, we were exhausted....CJ physically and me emotionally. On the way home, CJ overheard me receiving some really sad news about his poppa Enzo and my uncle. He was listening intently but looking out the car window. A few minutes after I hung up, he spoke quietly, "You know mom, when I was young, I don't remember life being so hard and sad." He's only ten! That is when my tears started to fall!
_____________________________________
Prayer Requests:
Please pray for a huge surge in his blood counts so we can move forward with our cruise next week. Please pray for a safe trip free from infection for CJ and for continued function of the port. Please pray for CJ's Poppa Enzo! I can't even put into words what we are feeling and how sad we are and how difficult this has been.
Thank you for your prayers and support of our family. We are eternally grateful.
That was a shock since he was fine the last time we had counts done and we have been going about business as usual. We are on a race to boost his counts between now and Wednesday since we are scheduled to leave on our first ever family cruise. I will share more about that amazing opportunity God has given us in the future. Unfortunately, the low blood counts were only the start of the roller coaster of emotions to come.
We arrived early Friday and for the most part things progressed as usual until they accessed his port. As he waited for them to get everything ready, (it all has to be a really sterile environment so it takes some time to set it all up) I saw the tears forming in his eyes and this broke my heart. He has been so strong in this area lately that sometimes I forget how extremely difficult this actually is for him and how far he has come.
Let me just say that you can usually tell when a child is getting his port accessed because that is where all the crying and screaming is coming from. CJ had difficulty in the beginning but he has really learned to manage the anxiety of the port access. I talk to so many parents going through this and read about so many other kids on their care pages, and the port access is a huge issue for many of them. For some it is the needle being inserted into their chest. For others it is the large tape that will cover it all and stick to their chest only to have to be painfully removed later. But for all of them, it is the reality of what it stands for. They are painfully aware that they are about to receive medications that will in all likelihood make them sick, or tired, or weak, or immune suppressed. It is all the port represents that contributes to the tears and anxiety.
As his tears rolled down his cheeks and my heart broke, I held his hand and he squeezed hard waiting for it to be over. The needle went in smoothly only to get no blood return. We were sure the needle was in and the port was accessed properly because the nurse was able inject fluids into the port. Nevertheless, it would not show blood return when she pulled back on the syringe. So after three attempts, which means three separate needle entries into his chest, and switching to a one inch needle instead of a 3 quarter inch needle, it still would not work. They still needed blood to get his blood counts done so they decided to draw from his finger to get that started while they worked on the port and tried to get the blood flowing.
In an attempt to unclog the port, the the nurse got him up and out of the bed and had him doing stretches, and reaches, and touching his toes, and anything she could think of as she pulled back on the syringe trying to get the port unclogged and the blood flowing. Still no blood return! My anxiety was rising a little and I was trying not to think too far ahead to the "what ifs". Thankfully, CJ has great nurses that really care for him and are amazing at what they do so that helped me stay calm.
Since he was able to receive fluids in the port they could still use it to put him to sleep for the spinal tap and chemo injection into the spine. They decided to insert and IV in his arm while he was asleep so they could give him another chemo med he needed.
This is when I realized why it was so important they get blood return before injecting the chemo. If for any reason the chemo medication he was receiving leaked even a little because of a tiny hole in the tubing or inadequate access to the vein, it would eat away his tissue and flesh and leave a horrific wound. Needless to say or detail for you here, it was a nerve wracking experience for both me and the nurse injecting the chemotherapy medication directly into the vein and praying it was going in okay. She kept stopping and checking his vein again and again and she flushed it repeatedly afterward to assure it was in completely. I was never so happy for it to be over.
After the spinal, while he was sleeping, I was standing by his bed and looking down at him and suddenly it really gripped my heart to see him laying there with the wires and needles coming out of him and the monitors beeping and counting his breathing in the background. I have stood over him like this multiple times now so it is hard to explain what I felt and why this particular time. It was not like the first times when it was all so scary and new and overwhelming. It was different. I don't even think I can explain it adequately other than to say it just seemed to hit me at that moment all that he is battling to beat this cancer. He does so well in between appointments that it is easy to lose sight of it all. We spend so much of our time focusing on helping other families and kids in this battle, but when I stood over him this week it was like, "This is my son laying here going through this." I don't know. I know this is not making sense. Here, you stand over him and maybe it can better explain what I felt.........
Once it was over and the nurse and I could breathe again because CJ's vein did not blow up, I stood by CJ's bed and waited for him to wake up. I could overhear the family in the next cubicle as they received instructions about what the next two years of their lives would be like now that their 11 year old daughter was diagnosed with cancer. I just sat there and experienced it all over again like never before. This child will be on a very similar protocol as CJ, so to hear the same things being repeated that we heard those first days was eerily reminiscent.
I remembered what it was like and how overwhelming it all was. I could not believe I was standing there over a year later as another family was just entering the battle. I kept thinking, What can I tell them that will actually help? What would I have wanted to hear from another mom that day? What would encourage me? Did some mom in the next cubicle overhear us that first day and feel the same way? So I waited, and battled the feelings of inadequacy and temptation to 'mind my own business'. Instead, I introduced myself and told them about CJ and assured them it would get easier. I encouraged them to lean on their faith in God and each other not their understanding of cancer.
As I sat back down in my own cubicle I wondered if I was totally honest. Does it get easier? Could I honestly say that I would I describe today as easier than a year ago or just more familiar and routine? I might have to rethink my approach before I start the mentoring program of newly diagnosed families.
CJ eventually woke up and the nurse decided to inject some medicine into the port and see if it would unclog it. We would have to wait an hour and if it did not work he would have to have a port study done, which would included dyes and scans, to see what was wrong and if he needed a new port, so lets just say I really wanted this medicine to work. After a few tries throughout the hour it was still not working. At the end of the hour the nurse tried one more time. This time dad was at home praying for it to work. She tried and nothing happened. Then she pulled back again and there was the most beautiful flow of red blood I had ever seen. The nurse was happy! I was relieved! And CJ was ready to get it out of him and go home! As I told you way back in the beginning of this journey when we were first introduced to ports, I never thought we would be praying to actually see blood. Welcome to the world of childhood cancer!
By the time we left, we were exhausted....CJ physically and me emotionally. On the way home, CJ overheard me receiving some really sad news about his poppa Enzo and my uncle. He was listening intently but looking out the car window. A few minutes after I hung up, he spoke quietly, "You know mom, when I was young, I don't remember life being so hard and sad." He's only ten! That is when my tears started to fall!
_____________________________________
Prayer Requests:
Please pray for a huge surge in his blood counts so we can move forward with our cruise next week. Please pray for a safe trip free from infection for CJ and for continued function of the port. Please pray for CJ's Poppa Enzo! I can't even put into words what we are feeling and how sad we are and how difficult this has been.
Thank you for your prayers and support of our family. We are eternally grateful.
